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November/December 2014

AGE PROJECT ‘POLIO - A LIVING HISTORY’

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PPs DAy reAches PArliAment

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The British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex HA4 6SE. Freephone 0800 018 0586 supplied by MCI Worldcom Fax: 020 8842 0555 Email: [email protected] Website: www.britishpolio.org.uk

National Officers Chairman: Bryan Rowley Vice Chairman: David Mitchell Treasurer: Linda Evers

Patrons Dr Moira Anderson OBE Lionel Blair Michael Cassidy CBE Sir Bobby Charlton CBE Joan Collins OBE Joe Fisher Hannah Gordon Gordon Lumb Andy Love MP

Ambassadors James Crisp, Julia Roberts, Anne Wafula-Strike MBE and Professor Gareth Williams

Publisher: The British Polio Fellowship Editor: Jon Gardner, BeyondPR: Email [email protected] Assistant Editor: Spencer Bailey, BeyondPR: Email [email protected] Design and production: BeyondPR.co.uk Contributors: Will Hitchmough; Jane Sherwin; George Archer / georgearcherphotography.com; Shaun Flannery Photography / shaunflanneryphotography.com; Printing and distribution: Russell Press, Nottingham

the bulletin is the bi-monthly magazine of The British Polio Fellowship, distributed free to members (circ. 9,000). Cost for non-members is £2.50 (annual subscription £15.00). Please send cheque/postal orders to Central Office at above address.

Articles, letters, news items, photographs are welcome and will be published at the discretion of the editor. The publishers, authors and printers cannot accept liability for errors or omissions. Any transparencies, prints or artwork will be accepted at owner’s risk. All rights reserved. No part of this publication may be reported in any form without written permission of the copyright holder and publisher. the bulletin is printed on Magnomatt paper that meets and surpasses environmental standards and is recyclable. Only pulp with a low environmental impact is used and all integrated pulp is TCF (Totally Chlorine Free). Market pulp is either ECF (Elementary Chlorine Free) or TCF.

contActs: Chief Executive Ted Hill, MBE. Tel: 0208 836 3671 [email protected] Manager General Administration Support (Panels) Sarah Mchugh. Tel: 0800 018 0586 [email protected] of Operations & Services Heike Kluever-Littlewood. Tel 0208 836 3682 [email protected] Services Team Disability Benefits, Information and Advice Membership, Enquiries and Joining Branch Tel: 0800 018 0586 [email protected] Programme Co-ordinator Rosalind Evans. Tel: 0208 836 3686 [email protected] and Campaigns Website Kripen Dhrona. Tel: 0208 836 3684 [email protected] Shirley Russell. Tel: 01953 451620 [email protected] Legacies and Events Marianne Gkikas. Tel: 0208 836 3679 [email protected] Diane Ware. Tel: 0208 836 3678 [email protected], Administration, In Memoriam, Donations and Merchandise Linda Davis. Tel: 0208 836 3689 [email protected] Dawn Grafetsberger. Tel: 0208 836 3675 [email protected] Officer - Scotland Tara Anderson. Mobile: 07903701251 Email: [email protected] Officer - South West England Rebecca Colpus. Mobile: 07908 481 479 [email protected] Forum Members & Guests www.britishpolio.org.ukArchivist (Volunteer) Barry North. Tel: 07973 326 714 [email protected] bulletin Design and editorial team (BeyondPR) Tel: 0114 275 6996 [email protected]

The British Polio Fellowship is a registered charity in England and Wales (1108335) and in Scotland (SC038863). A company limited by guarantee and registered in England and Wales No 5294321. The Fellowship reserves the right to edit articles and letters submitted. The views expressed in the bulletin are not necessarily those of The Fellowship.

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4 the British Polio Fellowship

neWs From centrAl oFFice

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Message from the

As we reach the final issue of the bulletin for 2014, members of The British Polio Fellowship can look back on our achievements over the year of our 75th Anniversary with great pride and a real sense of achievement.

So much has been squeezed into what now feels like 12 short months it is difficult to know where to start. It seems like only yesterday we were all ‘Sowing the seeds of hope’ following handing out seed packets with our March/April issue, then of course in May/June we were able to announce the fantastic Premier League sponsorship, plus the news that Birmingham City had invited us along to do some fundraising at their match against Blackburn Rovers.

Looking back, we can see things have come full circle. In this issue we report on how our new Chair of Trustees Bryan Rowley went along to St Andrews to collect a £1,000 donation from the former player’s association of Birmingham City and as we were going to press, we had the wonderful news that Syngenta and Westland would be sponsoring our ‘Sowing the seeds of hope’ 2015 calendar.

This year has seen our charity mark a momentous 75 years in truly remarkable style, jam packed with events that have seen members, Trustees, ambassadors and patrons alike shout loud and clear about Polio and the Post Polio Syndrome message, but don’t worry we’ve had some fun along the way!

PPs Day successThe headline news in this issue is the highly successful PPS Day we had on 22 October, which saw the charity and our members make waves in Westminster as we hosted a Parliamentary reception to get the Post Polio Syndrome message across. For the first time we all wore our ‘Sowing the seeds of hope’ badge and many of you displayed your PPS day posters. The badges received a great amount of interest both from members and all who saw them. We hope this year’s higher profile PPS Day will be the start of things to come as we look to spread the message about Post Polio Syndrome.

the British Polio Fellowship 5


AGm and the new trusteesThis year’s AGM in Cardiff was a success as ever, not least because we unveiled our new Trustees, who have already hit the ground running, with Bryan fronting this year’s Winter Warmth Campaign and representing us at Birmingham City. A message from Bryan is printed in this issue and we’ve compiled profiles of each of our new Trustees which you can also read in this issue.

I would like to add my own tribute to our outgoing Trustees who have done a fantastic job. I’m sure our readers will join me in thanking them for all their efforts and Pam Jones in particular. I would also like to wish our new Trustees all the very best as they take us forward into 2015 and beyond. They have big shoes to fill but members have elected a very strong team with a broad base of skills who are ready for the challenge.

Bryan rowley and Birmingham city FcAs mentioned above, Bryan Rowley has started his term as Chair of the Trustees in much the same way as he intends to continue. Following him kick starting this year’s Winter Warmth campaign, news of which appeared in the last bulletin, he has continued his great work. This month

he was on hand to collect a donation on behalf of Birmingham City FC in an event which saw the club develop its great relationship with the charity.

Dance championshipsOctober saw The British Polio Fellowship attend The International Dancing Championships in regal style. We were treated to using the royal box at the event at the Royal Albert Hall to mark the charity’s 75th Anniversary. You can read more about the event on page 14, which saw the best ballroom dancers in the world come together to compete. Here you will find pictures of the key members, Ambassadors, supporters and Trustees who attended what was once again a stunning and highly successful evening.

strictly WheelsWhilst on the subject of dancing, this month you can read all about Strictly Wheels and what their organisation is all about. We met them at a recent Roadshow and thought many members would be interested in what they do. In essence they promote dancing on two wheels rather than two feet; read all about their competitions and who knows you might reach the grand final held at Blackpool Tower Ballroom, the stage of the BBC version of Strictly Come Dancing!

thanksgiving service at Glasgow cathedralAs this month’s bulletin goes to print, our Scottish members attended a special thanksgiving service at Glasgow Cathedral on 2 November as part of the charity’s 75th Anniversary celebrations and marking 60 years of The British Polio Fellowship in Scotland.

Finally as we approach Christmas and the New Year, it is still not too late to buy your British Polio Fellowship Christmas Cards to send to your friends and relatives (details on pages 31 and 32) whilst the ‘Sowing the seeds of hope’ calendars look absolutely stunning and are available now.

It’s been a proud and memorable year for myself as the CEO of The British Polio Fellowship in its 75th year, and I hope you will all look back as fondly on this year as I will. All that remains is for me, on behalf of all the team at Central Office, to wish all our members and readers of the bulletin a very Merry Christmas and happy and healthy New Year in 2015.

The bulletin will of course return for the January/February issue 2015. Anyone wishing to supply copy should send it (with any photos) to [email protected] by Friday 28 November 2014.

We hope this year’s higher profile PPs Day will be the start of things to come as we look to spread the message about Post Polio syndrome.



I am greatly honoured to be elected as your new National Chair.

As you know, I have been active in the The British Polio Fellowship for many years and have a wish to see The British Polio Fellowship further develop to meet current challenges.

the new chair of trustees

This does not mean that we abandon all that went before, rather that we continue to build on the base that our founder, Frederic Morena, laid and meet the changes and problems that arise.

He did not envisage the emergence of Post Polio Syndrome, which affects most of our lives as we get older; we live with its effects every day, but he saw the need for support and fellowship between members and this is still our main aim. Our support services develop and distribute a large number of help and information leaflets that enable people to understand the management of PPS.

The British Polio Fellowship has changed as times and attitudes to disability change and your present Trustees are responsible for overseeing the next steps. We strive to be as effective as possible in managing the charity without losing sight of you, our members, who are the real reason for our being.

As we all get older and less mobile, some branches have ceased to function and new ones have opened to maintain the links which are so essential in sharing our experiences and giving mutual support. I said many years ago that I would be delighted to see The British Polio Fellowship go out of business, not from lack of care, but from there being no more members to support because Polio and its effects had vanished.

This year we are celebrating 75 years of the The British Polio Fellowship and seeking to raise greater awareness of PPS particularly among the medical profession where our own

experience tells us that knowledge is sadly lacking. So often people tell us that Polio is beaten or no longer exists; it isn’t, as we well know. New cases may be very rare but PPS is a major problem for thousands of our number.

During my time in office I have a wish to visit every region, hopefully at a regional event when many branches get together so I can meet more members. I would like to visit every branch but logistically that is impossible.

My promise to you is that I will do my utmost to work with you to maintain the best of our founding principles and hope to keep developments in line with those aims.

If there is anything you feel I may be able to do to help, please contact me at [email protected] or through Central Office and if I can help, I will.

Bryan Rowley

A message from

my promise to you is that i will do my utmost to work with

you to maintain the best of our founding principles and hope to keep developments in line

with those aims.

PPS Day at the House of Commons, held on 22 October, saw calls for an NHS strategy on Post Polio Syndrome to ensure those living with PPS receive the support they need from primary care.

PPS day brought together over 100 friends, members, MPs and supporters to hear a welcome from Andy Love at 5.00pm, followed by a speech by Robin Luff, Chair of our expert panel at 5.15pm. Attendees were a who’s who of our Trustees, Ambassadors and Patrons, including Paralympian James Crisp, QVC presenter and author Julia Roberts, Lionel Blair, Sir Bert Massie and many more influential figures from the charity, the medical profession and the media. PPS Day wildflower badges distributed via the bulletin were very much in evidence.

Bryan Rowley had an early start to the day, having been invited

to speak live to BBC Radio Merseyside’s 340,000 listeners about PPS Day on breakfast news with Tony Snell just after 8.00am before making his way to a pre-publicity photo shoot and then the event itself. Bryan was joined on the show by the Chairman of the North West Branch Mike Griffiths; while Sir Bert Massie kindly recorded a message that went out at 7.00am.

Back in London, Bryan thanked Andy and Robin for their speeches and everyone else for making the day such a keynote event in the struggle to see PPS recognised.

In his speech to the gathering at 5.00pm, Andy Love said that

much more work needs to be done strategically to make sure The British Polio Fellowship community are supported by primary care – namely GPs and the NHS. The MP for Edmonton believes a greater understanding of PPS amongst healthcare professionals is needed to tackle the problem more effectively.



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this year has been a platform to drive our message home on

PPs to the wider public.

This year’s Post Polio Syndrome Day reached the House of Commons in fine style. Hosted by Andrew Love MP, the massively over-subscribed event was a huge success and culminates a year of events marking not just our special anniversary, but also the campaign to see PPS more widely recognised.

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call for nhs strategy on PPs

The British Polio Fellowship8


Andy also pointed out the great value of the original Early Day Motion (EDM) from October last year as a pre-cursor to this event, and added that Parliament is a fantastic springboard for these messages, as the campaign moves into greater prominence with the general public.

Robin Luff echoed many of Andy’s thoughts in his address, in commenting on the need to get parity for those with Polio and PPS in terms of how services for them stack up when compared to other groups. Robin pointed to spinal injury units as an example of the great provision of specialist services to these groups, when compared to services for those with PPS. This

is not to compare like with like, but thankfully far fewer people need the services of a spinal injuries unit, as opposed to over 120,000 people with PPS who need help now. This massive gap between the need and current provision was highlighted as a key campaign strand for the future.

“Marking this year’s PPS Day at the Palace of Westminster is a fitting way to round off our 75th Anniversary year,” said Ted Hill, MBE, CEO of The British Polio Fellowship. “I really want to thank all our supporters for coming along. They really re-energised the campaign and as Andy touched on, being able to take our message to

the very heart of government is vital if we are to deliver real change for members. From this perspective, the importance of this event in our PPS campaign strategy cannot be overestimated.”

The event builds on the work done this year to promote the needs of those living with PPS and on the EDM.

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the mP for edmonton believes a greater

understanding of PPs amongst healthcare

professionals is needed.

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Cont ▼ ▼

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The British Polio Fellowship 9


Receiving widespread cross party support, the EDM recognised the charity’s work; calling on the Department for Health to bring forward a strategy to address the needs of those suffering from PPS and to publicise those needs within the medical profession.

PPS Day was launched to help deliver on these aims, but we also must deliver wider recognition locally and nationally for a condition that affects roughly the same number of people as Parkinson’s disease, but at the moment, is much less well known. With PPS Day in Westminster, coupled with member activity throughout the country we are well on the way.

“This event is important to us in so many ways,” added Ted. “It is a chance to remind everyone of The British Polio Fellowship’s achievements over the last 75 years of our history and to say thank you to those who have supported us and continue to do so on this journey we are on to confront PPS. This is just the beginning. The battle to beat Polio worldwide continues.

We have a new battle here in the UK to beat PPS and it is a struggle on behalf of our members we are determined to win.”

Parkinson’s has instant recall with the public and everyone knows what it is. Yet around the same number of people are suffering with the debilitating neurological condition that is PPS in silence. This is the ‘education challenge’ the charity looks to address with PPS Day.

Cont ▼ ▼

1. Marianne Gkikas and Lionel Blair

2. David Mitchell, Bosik Gharapetian, Linda Evers and Nvart Gharapetian

3. James and Katie Crisp

4. Pam Jones and Mike Egan

5. Sandy and Eric Yarrow

6. Ted Hill and Marcus Jones MP

7. Ken and Shirley Prentice, Kripen Dhrona

8. Bryan Rowley

9. Pam Jones and Linda Evers

10. David Mitchell

11. Maureen Fenner

it is a chance to remind everyone of the British Polio Fellowship’s achievements

over the last 75 years.

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9 10



In 2013 The British Polio Fellowship launched ‘PPS Day’ in order to help raise awareness about PPS and to raise funds to support those who had developed the condition. A very large number of people are expected to develop PPS and therefore it is vital to raise awareness so that anyone developing the condition can get diagnosed and start receiving care without delay.

Schools across the country have already been helping to spread the message about PPS in 2014 by ‘Sowing the seeds of hope’ for The British Polio Fellowship. A collection of wildflower seeds, specially selected by Syngenta and Westland Horticulture, were sent

out to participating schools where they were planted by students to represent the plight of Britain’s Polio survivors. Wildflowers are often seen as a symbol of hope in the face of adversity and for that reason they have been adopted by The British Polio Fellowship to symbolise hope for survivors facing new battles with PPS. The ‘Sowing the seeds of hope’ campaign has helped to make younger generations aware of PPS

Cont ▼ ▼

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1. Antony Bean, Aiden Linton-Smith, Aleah Leigh

2. Eve Conway, James Crisp, Robert Conway

3. Chris Maxwell, Jacqui Thompson, Julia Roberts

4. Lee Su Jeong, Alexandra Curtis, Andy Love

this is just the beginning. the battle to beat Polio worldwide continues.

as, sadly, it is inevitable that in their lifetime more people will need help to face the condition.

The campaign will be extended into schools again throughout 2015, with the wildflower emblem used as part of a children’s colouring competition.



celebrating PPs Day

ABOVE: The photo was taken outside South Shore Community Centre in Blackpool after our recent Regional Committee Meeting.

L-R: Janet Brear (North East Lancashire Branch) Mike Griffiths (Merseyside Branch and Regional Chairman) Paul Windle and Janet Baggaley (North East Lancashire Branch) Muriel Bradshaw and Patricia Burrows (Blackpool Branch).

Pam Gavan (left) and Diana Marshal (right). Both whom had Polio themselves.

RIGHT: Some of the Worthing and Sussex branch at their get together on Saturday 18 October 2014.

LEFT: Sunderland Branch members proudly wearing their PPS awareness badges and holding their posters.

RIGHT: The committee members of The Worthing & Sussex Branch. They are Left to Right: back row, Bill Finch, Carole Cresdee, Terry Studd, Janet Jones, Bob Stephens. Front row, Roger Brand, Gill White, Jim Tidy and Mary Lessiter. Two members were absent from the photo, they were Barbara Stephens and Pam Gavan.

ABOVE: Home Counties North Regional Qualifying Games take time to celebrate PPS Day.

Walsall branch members



with Striking dress at MBE award ceremonyAmbassador Anne turns heads

The gown was worn by Anne when she collected her MBE (Member of the British Empire) at the Buckingham Palace Investiture on 14 October for her services to disability, sport and for charity work for The British Polio Fellowship and others.

“To be formally presented with an MBE at Buckingham Palace was truly the highest honour of my life and I cannot put into words how excited I have been about the whole occasion,” said Anne. “I am so pleased to have been able to team up with Izzy to create a truly beautiful dress worthy of the occasion.”

Regular readers of the bulletin will recall that back in July, Anne wore a dress made of train tickets by Aleah Leigh in a bid to raise awareness of the late effects of Polio and PPS and the struggles that disabled people face when it comes to fashion. This dress was another opportunity to promote disabled fashion, Polio and PPS at Buckingham Palace.

Canadian designer Izzy Camilleri has worked with a number of high profile celebrities, including designing Meryl Streep’s fur coat in Hollywood classic The Devil Wears Prada. She has since turned her attention to disability and wheelchair fashion, creating her very own brand for the purpose called IZ Adaptive.

The first outfit, the teal green day dress was made with the African print that was gifted to Anne from the places in Africa she does her charity work for. The dress was also cut for a

seated framed body, allowing room at the back while seated, as well as a cleaner look at the waist with no excess of fabric.

The second outfit, made from a mint coloured, rhinestoned lace was more sleek and fitted to Anne for the gala reception in the evening. Rhinestones were placed around the neckline to add more sparkle to her special day.

The wheel accessories for the evening were designed to sparkle all night with sequins, rhinestones and shimmering flowers, while both ensembles were capped by stunning complementary headwear by milliner Karyn Gingras.

“It’s my hope that now I have made my way to the Investiture in my beautifully designed outfit to collect my MBE, more people will realise that a wheelchair is no boundary for looking and feeling glamourous and wheelchair

users can achieve their dreams and ambitions,” said Anne.

The evening of Anne’s Investiture was further marked with a celebratory dinner at the Grosvenor Hotel, Park Lane, London. The event was hosted by Rotary International Polio Ambassador in Nigeria, Sir Emeka Offor and attended by representatives of The British Polio Fellowship to mark the MBE.

British Polio Fellowship Ambassador Anne Wafula-Strike teamed up with celebrity dress designer Izzy Camilleri, (a specialist in disability fashion), to create a dress fit to meet The Queen.

"It is an honour for me to work with Anne and be a part of this monumental day,” said Izzy Camilleri. “Anne is an amazing person who gives so much of herself and has done so much for so many."



with Striking dress at MBE award ceremony Access all areas

unbelievably the disabled still face a staggering array of accessibility issues when

using public transport.

After attending the London Transport Accessibility show at London’s ExCel Exhibition Centre on 2 October, our own CEO Ted Hill, MBE welcomed Transport for London (TfL) plans to invest £75 million in improving disabled access at their stations but called for more to be done nationally to tackle the ongoing problems surrounding transport and access for disabled people throughout the UK.

Ted attended the Access All Areas event at London’s Excel Centre due to The British Polio Fellowship’s increasing concerns about the accessibility issues faced by Britain’s Polio and Post Polio Syndrome (PPS) community. Government statistics show that more than 2 million people with disabilities have reported difficulties related to their impairment or disability in accessing transport and that needs to change.

“Unbelievably disabled people still face a staggering array of accessibility issues when using public transport and accessing buildings and facilities and that should not be the case,” said Ted. “TfL’s plans to invest £75 million in disabled access plus a commitment to work in greater partnership with local councils and developers to achieve this are very welcome. But it is actions, not words that will ultimately make the difference and we will look forward to them delivering on their promises.”

We live in a nation that arguably puts more emphasis on diversity and equal opportunities than any in the world and yet disabled access

remains a problem. TfL has plans to have 53% of all tube stations stair free by 2024, but clearly there is a long way to go. London is just one city, but getting it right in the capital will hopefully serve as a catalyst to drive change throughout the country as a whole.

In August, Ted commented on research showing that nearly two thirds of the country’s top 100 visitor attractions are not fully accessible to

wheelchair users, adding his voice to calls for change. There are over 11 million people in the UK with a limiting long term illness, impairment or disability and the majority of these are of the type that affects mobility. That’s potentially a sixth of the population that can’t access attractions, or the transport to reach them. Many members of The British Polio Fellowship fall into this category.

The modern world can be restrictive enough and public transport is one area where change can make a profound difference to people’s lives. The bulletin will keep members updated on developments in what is clearly going to be an ongoing story.

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Members, supporters, Ambassadors and Trustees of The British Polio Fellowship were out in force to attend the International Ballroom Dancing Championships at the Royal Albert Hall on 9 October.

A spectacular night of dancing and fundraising at the Royal Albert Hall

Once again ably and skilfully arranged by Marianne Gkikas at Central Office; Ted Hill joined VIPs, staff and Ambassadors and all who came along to enjoy the evening and lend their support to the charity for an extra special commemoration of its 75th Anniversary.

We were delighted to welcome along Ambassadors James Crisp and his wife Katie, while Syngenta’s Denise Billingham was also there to enjoy the evening. Also in attendance was Ian Dutton, Head of Commercial at Birmingham City FC, together with his partner Sophia Grant and other charity supporters.

Her Majesty The Queen generously allowed The British Polio Fellowship the use of the Royal Box in our 75th Anniversary year; the perfect gift from Her Majesty, enabling

the charity to invite many key supporters along to thank them for their efforts in such a milestone year.

Special thanks, as always, must go to Peter Knight and Doug Williamson who together co-ordinated programme sales over the two days at Brentwood. Blanche Ingle-Bateman is still doing a superb job at the Albert Hall along with her assistants Susan and Anita. Our sincere thanks go to all those helpers and volunteers

who made the evening such an outstanding success.

“On behalf of The British Polio Fellowship, I want to give a massive thank you to our Patrons, Ambassadors, volunteers and members present who enabled the event to be a great success.” said Ted Hill. “We are also very grateful to Dance News for their continued support of our charity over so many years. The event was also an opportunity to say a big thank you to people like Ian Dutton, Denise Billingham and Moira Anderson who have supported the charity over the last 12 months and continue to do so.”

our sincere thanks go to all those helpers and volunteers

who made the evening such an outstanding success.



Those in attendance were there to see amateur and professional dancers alike swirl in their streamline suits and sequinned dresses with around 360 of the world’s foremost amateur and professional dance talent in the country competing for the International Standard and Latin titles.

“The organisers of the event, Dance News have been supporting The British Polio Fellowship for over forty years and we remain extremely grateful for all their help and decades of support,” added Ted. “In addition to donating money from programme sales for this event (Brentwood and Albert Hall) they also give us a £4,000 donation every year.”

The event was an opportunity for members, new Trustees, supporters and Ambassadors to catch up and

in some cases put names to faces for the first time. As we go to press, new Chair of Trustees Bryan Rowley had attended the Legends Dinner with Ian Dutton at Birmingham City. In addition to collecting a donation for The British Polio Fellowship, this may well become a regular event.

In this issue we are also announcing that Syngenta is very kindly sponsoring our 2015 calendar, while Moira Anderson OBE is also attending the Glasgow thanksgiving service on 2 November and

continues to be a strong supporter of the charity for which we are very grateful. All in all a great success and a chance for friends both old and new to meet and promote the work of The British Polio Fellowship.

1. Katie Crisp, Aiden Linton-Smith and James Crisp 2. Denise Billingham, Diane Ware, Ian Billingham 3. Robin Luff, Sandy Luff, Dr Moira Anderson OBE, Dr Stuart McDonald 4. Marianne Gkikas, Sophia Grant, Ted Hill, Ian Dutton and Diane Ware 5. Bryan Rowley, David Mitchell, Anne Rowley

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the event was an opportunity for members, new trustees,

supporters and ambassadors to catch up.



Welcome to our

The Cardiff AGM was the opportunity for outgoing Chair Pam Jones to pass on the sword of office (quite literally!) to the newly elected Chair of Trustees Bryan Rowley and to wish his fellow Trustees Linda Evers, Bosik Gharapetian, Archie Leyden, Mark Fisher, Christine Lumb, Dorothy Crook and David Mitchell the very best of luck.

In a difficult operating climate for all charities, the role of our Trustees is more important than ever. It is widely acknowledged now that charities must operate much more like businesses to survive these days and having a diverse board of Trustees with a wide range of business skills is essential.

“The British Polio Fellowship has always been lucky in the sense we have always enjoyed a pool of quality people with the right abilities to act as effective Trustees,” said Ted Hill. “Pam and the outgoing Trustees have done a superb job and will be a hard act to follow, but the new team has the right blend of diversity, skills and experience to take us forward over the coming years and we wish them all the very best for the future.”

Pam Jones had some advice for the incoming Trustees: “It is essential that we have Trustees that understand their responsibilities. They need to be able to understand accounts as they are

accountable for our finances; have knowledge or experience of business management as well as having an understanding of the needs of the membership. This is a great deal to ask.

We had a training day for prospective Trustees back in May which was excellent and the membership has made a balanced and informed choice and I wish Bryan the new Chair and all his fellow Trustees all the very best for the future.”

Many of our new Trustees will be well known to members but a brief introduction to each is provided in the following pages.

A new team at the top! (Left to right): top row: Bosik Gharapetian, Archie Leyden, Mark Fisher, David Mitchell. Front row: Bryan Rowley and Linda Evers are welcomed as Trustees by Ted Hill.

the bulletin would like to extend a very warm welcome to all the new Trustees, who assembled for the first time with new Chair Bryan Rowley at the Cardiff AGM on 20 September.

Sword of office – outgoing Chair Pam Jones joins new Chair of Trustees Bryan Rowley to cut the cake in Cardiff.

new trustees

17the British Polio Fellowship


Bryan rowley, chair of trusteesBryan Rowley became the very first child member of The British Polio Fellowship in 1945. He has enjoyed a varied working life, acquiring the skills that make him an ideal Chair of Trustees.

Working in research for the General Electric Company and the De Hallivand Aircraft Co, Bryan then moved into teaching, rising to head of a science department. He then set up his own business but developing PPS led Bryan to work in the City Council Housing Department until his retirement.

Bryan has seen The British Polio Fellowship come an awful long way since 1945 and is keen for it to keep moving with the times.

“Many members will remember the ‘old’ structure of The British Polio Fellowship. However, times have changed and it has been necessary for The British Polio Fellowship to change with them. I believe that it is important that we still retain all the very best of The British Polio Fellowship’s original ideals, as well as harnessing new ideas,” explained Bryan.

As the Chair of Trustees Bryan is keen to get out and about to visit every Region and determined to ensure management of The British Polio Fellowship is as transparent as possible for members.

“Bryan’s extensive experience

and outlook on life will help him to make a really positive contribution as Chair of Trustees,” said Ted. “Everyone knows Bryan has a tremendous commitment to the members and understands the need to face up to the challenge posed to members by PPS.”

linda evers, trustee and national treasurerLinda Evers takes up the position of National Treasurer, bringing her extensive experience from the world of finance and accounting to the role, following an outstanding career with HM Revenue and Customs. Linda has been heavily involved with the running of The British Polio Fellowship at both Branch and Regional level and becoming National Treasurer is both a natural step and a new challenge.

“I am really looking forward to fulfilling my new duties as National Treasurer,” added Linda. From my working life I have developed a thorough understanding of accounting principles which will be important in my role as National Treasurer and help to ensure that we continue to manage our finances prudently, keeping within the requirements of our Articles of Association and the rules of the Charity Commission.”

The British Polio Fellowship has

been a big part of Linda’s life and she believes that it provides a valuable service for Polio survivors, helping them to branch out, meet new people and form a community. “I would certainly lead a very different, very lonely life if it wasn’t for The British Polio Fellowship and I dare say the same would be true for many other people.”

“It was in the 1970s that I began to realise how much the Committee did for our branch, organising dances and fundraising events,” added Linda. “As I became more involved, I began to see ‘the big picture’ and how much work goes into making The British Polio Fellowship the superb national organisation that it is. I decided to increase my involvement because I knew that after retirement I would have more time and that I would have some worthwhile skills to offer.”

Bosik GharapetianBosik Gharapetian is a keen believer of the work that The British Polio Fellowship does in supporting those with Polio and PPS in the United Kingdom and whilst serving as Trustee he will bring the experience he has gained throughout the last 28 years of his working career to the table.

Bosik has worked in a variety of roles including management, consultancy and human resources as well as the banking and financial sectors.

everyone knows Bryan has a tremendous commitment

to the members.

i think that that social aspect of the British Polio Fellowship, meeting others and sharing experiences is

hugely important.

Cont ▼ ▼

Bosik has a keen involvement in charity work.



Bosik has a keen involvement in charity work, acting on the Board of Trustees for a local charity in London for the previous four years, serving the most vulnerable and under privileged members of the community. Bosik has held the positions of both Company Secretary and Treasurer which will stand him in good stead in his Trustee work for The British Polio Fellowship.

Archie leydenArchie Leyden is delighted to continue his six year stint as a Trustee for The British Polio Fellowship. Having been a member since 1962, Archie believes strongly that members should come first in The British Polio Fellowship and will be working hard with his fellow Trustees to ensure that remains the case.

As the Chairman of the Scottish region, Archie already has a very hands on role and the concept of a employing a Development Officer for Scotland was one of his ideas, which has since been adopted in the South West of England.

It’s ideas like this that demonstrate Archie’s thinking and philosophy of delivering services with members in mind that makes him an ideal member of the new board of Trustees tasked with taking the charity and the membership into the future.

mark FisherMark brings several years’ experience as a management consultant for Ernst & Young to his role as a Trustee. His affinity for The British Polio Fellowship is very strong, as his father Joe Fisher was instrumental in establishing the northern branches of The British Polio Fellowship.

Joe is still a committed member and patron of the charity and this enthusiasm has rubbed off on Mark, who was keen to use his own business experience to help The British Polio Fellowship build on the success of the last few years.

Mark brings a unique perspective to the role, having an intimate knowledge of the charity through his family and at the same time bringing fresh ideas from his time as an experienced businessman.

Mark has helped various large corporations, such as Unilever, BT and Diageo to improve their businesses and he hopes to have the same impact with The British Polio Fellowship.

christine lumbChristine joined The British Polio Fellowship in 1954 as a member of the Wakefield branch and became actively involved in branch affairs, holding the offices of Secretary and Treasurer and is currently Vice-Chairman. Like many members, Christine has met the challenges of

bringing up a family whilst working for a solicitor and most recently, the West Yorkshire Police.

“I now feel that I would like to help The British Polio Fellowship to meet the challenges facing members like the treatment of PPS,” said Christine. “I want to ensure we can continue to maintain the very important help and advice given by Central Office, especially the benefits team who are keeping us all up to date with changes at this very worrying time.”

Dorothy crook Dorothy has been a British Polio Fellowship member for many years after contracting the disease in 1940 and now suffering with PPS. As Vice Chairman of the Western Region and Chairman of the Ludlow Branch, she brings experience of the charity in an official capacity that will help her understand and support members.

Dorothy has many years of experience as a tutor on the Expert Patient Program. Whilst her work with the Services for Independent Living (SIL) in Herefordshire on the administrative side has gifted her with a knowledge of the NHS and the benefits system that when combined with her own Polio experiences, can ensure that she helps members of the charity receive all that they are entitled to.

As the chairman of the scottish region, Archie has a

very hands on role.

mark’s affinity for the British Polio Fellowship

is very strong.

Cont ▼ ▼

i would like to help the British Polio Fellowship to meet the challenges facing members.

Dorothy helps members receive all they are entitled to.



David mitchell vice-chairCompleting the line-up is David Mitchell, who having served as a local council standards scrutineer, brings a full understanding of corporate responsibility to the team. David had been a member of The British Polio Fellowship for 14 years and is well aware of the difficulties facing small charities today and brings with him a determination to help raise the profile of those with Polio and PPS to the level of Parkinson’s.

“The British Polio Fellowship is now on a firm basis thanks to the hard work done by both past and present Trustees,” added David. “We have exciting plans for the future and I’m looking forward to playing an active part.”

David rose to become the General Manager of the Carlton Hotel in Edinburgh, has worked as the editor of a national business magazine and lectured on business and finance for 15 years, along with running his own shop.

“With such a breadth of business and financial skills the new Trustees

clearly have the experience and strength in depth to take The British Polio Fellowship forward….. and I’m very much looking forward to working with them,” added Ted.

We have exciting plans for the future and i’m looking forward

to playing an active part.

19

cardiff AGmThe election of the new Trustees gave a serious edge to proceedings but the important business of The British Polio Fellowship was matched with lots of opportunities for networking amongst members and a chance to catch up on events. The digital graffiti wall was once again in attendance and interviews with some of our new Trustees are in this issue.

The feedback received from members was overwhelmingly positive, with 90% reporting that in their opinion The British Polio Fellowship is doing a great job. Many thanks to all who took the time to provide feedback and all suggestions will be seriously considered.

The event was also an opportunity for new members of the team to meet members. The Cardiff AGM was the first opportunity for the new Development Officer for the South West Region to introduce herself. The bulletin introduces Rebecca, above.

The AGM of 2014 took place in Cardiff on 20 September, again with lots of positive feedback from members.

20

Tara Anderson was appointed as Development Officer in Scotland with a similar brief and ensuring all members are brought into the fold and no one is left to feel isolated is a critical role.

“We know it is all too easy for those members in outlying areas to feel isolated and the appointment of Tara in Scotland and now Rebecca in the South West underlines our determination to serve all our members, no matter where in the country they may be,” said Ted. “Polio and PPS must not be forgotten and neither should our members.”

Rebecca brings with her over 20 years of considerable experience in the charity sector to the role, having recently worked with Caritas Care developing practical support for those with hearing loss. Rebecca has also

served as a manager with the Alzheimer’s Society, the Citizen’s Advice Bureau and Age Concern (now Age UK). Much of this work centred on the rural areas of Cumbria and Mid Wales, so the rural South West will hold no surprises for Rebecca, who is used to getting ‘out and about.’

“I am very excited to be joining The British Polio Fellowship and looking forward to being a part of the team,” said Rebecca. “The South West region is geographically quite isolated, so my experiences of the issues surrounding rural living will prove useful in this new post. There’s lots of scope to develop services to meet the identified needs of people living with Polio and PPS and I’m looking forward to getting started.”

Rebecca has hit the ground running and is already in the process of carrying out a survey of members in the South West to identify their needs. As part of this Rebecca has been busy meeting existing branches and groups in the region and promoting The British Polio Fellowship more generally. Members who attended the Annual General Meeting (AGM) in Cardiff may have already seen Rebecca as she and CEO Ted Hill MBE met with the newly elected Trustees.

“I have already started getting out meeting and communicating with members in Cardiff, Bristol and Exeter, which has been an important first step,” added Rebecca. “The next step in the short term is to complete the member survey. Once finished, that will inform our longer term objectives. It’s a new challenge for me, but many of the aims remain constant. We want to ensure no one is left out of the process. Not everyone knows we are here and ready to help and part of my job will be to promote that message throughout the region.”



for Polio supportNew Development Officer set to reach out to people in rural regionsHot on the heels of Tara Anderson joining us, Rebecca Colpus has now joined The British Polio Fellowship team to become our new Development Officer for the South-West Region. Rebecca has been given a clear brief to help expand the reach of The British Polio Fellowship into the rural communities of the South-West where some members can find it difficult to reach branches or regional events.

Aiming to makesouth West the best


Rebecca is already developing new printed materials for the South West, so the message on Polio and PPS can be spread to members not just through the usual channels, but through GP surgeries and other local community centres.

We know not everyone is on email or uses a phone and we know there are people still living with Polio and PPS who may not be members and may be unaware The British Polio Fellowship is here to help them and one of Rebecca’s tasks is to

change that. The charity continues to reach out with modern forms of communication, but sometimes the old ways are the best. By meeting people face to face, using posters and attending local community events we can reach

out to everyone and help any lost members out there and others with Polio and PPS to find their way to the help and support they need.

We are sure all members will join us in giving a very warm welcome to Rebecca and wish her the very best of luck in her new role.

Rebecca Colpus Development Officer – South West Email: [email protected] Mobile: 07908 481 479


i am very excited to be joining the British Polio Fellowship and looking forward to being

a part of the team.

Welcome to our new marketing communications officer

Kripen has traded Park Lane for Polio, PPS and Parliament. Following a long and successful stint managing the marketing arm of a popular London hotel, one of Kripen’s first roles was to get to know members, Trustees and supporters at the Dance Championships held at the Albert Hall, and more recently he has been kept busy co-ordinating events surrounding PPS Day at the House of Commons.

Kripen joins The British Polio Fellowship with a strong background in marketing and events, which is already proving invaluable.

“I am delighted to be joining The British Polio Fellowship,” said Kripen. “Replacing Glenys Balchin was always going to be difficult, but everyone has been very welcoming

and supportive. I have already met a number of members and Trustees and I’m looking forward to meeting more in the months and years ahead, and particularly looking forward to my very first indoor games next year.”

Most recently Kripen was a Project Manager for Liquid Bubble Media, but prior to this spent over 15 years implementing group marketing strategy for The Enterprise Hotel in London, which included pioneering social media policy for the group.

“Kripen brings a range of skills to the role that makes him the perfect man to replace Glenys at Central Office, and on behalf of everyone I would like to extend Kripen a warm welcome,” explained Ted Hill. “In a busy year for us all, Kripen has had to hit the ground running as we continue to make the most out of

our 75th Anniversary. PPS Day was a great first project for Kripen to get into and find out what The British Polio Fellowship’s key aims are with regard to addressing member concerns surrounding PPS and what is just one of the first steps in our efforts to raise awareness in all the right places about Polio and PPS.”

In addition to our new Trustees and Development Officer for the South West, the bulletin is also pleased to report The British Polio Fellowship also has a new Marketing Communications Officer, with the appointment of Kripen Dhrona, who joined the Central Office team in October.

Farewell to Glenys and a big thank you to her for all her considerable efforts over the years.



Listed below are the answers to the 75th Anniversary quiz, which many members entered. The closing date was Saturday 30 August.

Congratulations go to this year’s winner, Mr Roy Smith of Sheffield. Roy not only donated his prize to The British Polio Fellowship, but made a donation when he entered the quiz too, which he has entered now for the past three years. Thank you for your on-going support and generosity, Roy. It is much appreciated.

Entry cost just £1, with the prize being made up of 10% of the proceeds and 90% going to The British Polio Fellowship in aid of British Polio Month July 2014.

The following are cryptic clues related in one way or another to a 75th Anniversary (and others) or the work of The British Polio Fellowship.

Q1 What do you get if you score three times + half score + plus half of a half score? 7-4

A1 Seventy-five

Q2 Your wife wouldn’t mind you throwing this rock at her on this occasion. 7

A2 diamond

Q3 Who were those bugs who bit Uncle Sam all those years ago? 3,7

A3 The Beatles

Q4 What the old salt may expect to receive on this anniversary? 4

A4 salt

Q5 Accommodation offered by The British Polio Fellowhip in the west country where part of a pig’s leg smoked by a northern stream played about with a blow gun. 7,8

A5 Burnham Bungalow

Q6 Spoil arose anew to raise the aim of this quiz. 5,9

A6 Polio Awareness

Q7 All should become clear on the 15th. 7

A7 crystal

Q8 Twas on the Ides of March that the modern day Antony & Cleopatra would have for the first time around celebrated a golden event. 7,6 & 9,6

A8 Richard Burton & Elizabeth Taylor

Q9 No time for mixed talks whilst basin breaking – which leads us to the developers of polio vaccines. 4,5

A9 (Jonas) Salk & (Albert) Sabin

Q10 An alternative to this tot somehow could result in you being given a bracing experience by him or her. 9

A10 orthotist

Q11 There’s no way with a confused brain or regents could he have run that fast. But he did - it’s on the record – it was a gem of a year! His running mate couldn’t stop talking about it once he got his breath back. 5,9

A11 Roger Bannister

Q12 Is this the colour of the ale CAMRA members will be celebrating with this year? 4

A12 ruby

Q13 Weave rug as gift on this occasion. 5

A13 sugar

Q14 After effects which lead to moodily person? The British Polio Fellowhip does try to help those suffering from this. 4,5,8

A14 Post Polio Syndrome

Q15 Probably not the preferred container for CAMRA members when celebrating this festival. 3

A15 tin

Q16 Even though he wrote bugger all, on reflection he’s well remembered. 5,6

A16 Dylan Thomas

Q17 One way of coping with the ups and downs of life. 5,4

A17 stair lift

Q18 4 fatalities short of a century but a quarter of a century later we’re still looking for those accountable for that tragedy. 3,12,8

A18 The Hillsborough Disaster

Q19 Can CAMRA members remember what they were celebrating 3 years ago? 8,8

A19 fortieth birthday

Q20 Steal nine quinces? Naughty! We’ll not be around to enjoy them by this time but no doubt the The British Polio Fellowhip will be celebrating this anniversary. 16

A20 sesquicentennial

the 75th Anniversary Quiz 2014 the winners and answers are revealed!

22



This was a very closely contested quiz which resulted in the marker being a little bit mean by only awarding ½ marks to entrants who submitted numerical answers (even though these were correct). Now, before those of you who did this start booing and hissing, I’ll hastily add that you did also get at least one other answer wrong so, perhaps, you’ll forgive me?

Total proceeds included some very generous donations, for which many thanks. The quiz raised over £220. Our winner Roy had a perfect score of 20/20.

Any additional donations from family or friends will still be gratefully received and should be sent to: The British Polio Fellowship 75th Anniversary Quiz, c/o 80 Kendal Road, Sheffield S6 4QH (cheques payable to: The British Polio Fellowship)

For additional copies of the answer sheet, please either email: [email protected] including The British Polio Fellowship 75th Anniversary Quiz in the subject line or send sae to the above address.

The British Polio Fellowship gratefully acknowledges the support of Sheffield & District CAMRA in promoting this fundraising activity. Further details of Sheffield & District CAMRA activities are available from [email protected]

The awards, which were set up to commemorate Richard, who was a long standing member and committed servant of the charity, were presented at the AGM in Cardiff.

The deadline for entries was late May, giving members the first six months of the year to get their works perfected and brushed up, with an open theme for their art to depict anything they like. The prizes were generous with £250, £150 and £75 prizes in all three categories inspiring a number of entries from The British Polio Fellowship branches up and down the country.

The judging panel for the awards was made up of senior charity members and officials, including CEO Ted Hill MBE, who was up to the task of judging the stiff competition for prizes.

The first category was for Art; the specifications were a piece of original art no bigger than 3x3 feet squared, created with either oil paint, water paint or a drawing. The winner of the first prize of £250 was Clare Potter from Middlesex, with Betty Brown from Norfolk and Pamela Gavan of Sussex taking the second and third prizes respectively.

In the second category of poetry, entrants were asked to submit a piece of original poetry in typewritten format. Winner of the first prize was Diana Marshall from West Sussex with her entry, ‘Life is Smiling’, whilst Maureen Fenner of Kent, who wrote a letter in last month’s the bulletin, claimed second prize with her entry, ‘Sensible Shoes’. Janet Jones from Bognor Regis claimed the third prize of £75 for her entry ‘warmth’.

The third category which was for an original photograph returned the winners David Butler from Kent, Robin Stephens from West Sussex and Paul Oulton from Liverpool claiming the 1st, 2nd and 3rd prizes respectively.

richard Flint Awards encourages members to brush up on their creativity

Late August saw the competition winners announced for the inaugural Richard Flint awards; a series of prizes given for original works of poetry, paintings and photography as entered by members of The British Polio Fellowship.

the judging panel for the awards was made up of senior charity members and officials, including

ceo, ted hill mBe.



Polio newsMore Progress in the Global Eradication Effort for AfricaThe British Polio Fellowship was heartened to hear of major progress in Africa’s battle to eradicate Polio this month. The news came via an email to charity CEO Ted Hill MBE from The Global Polio Eradication Initiative which detailed a number of key breakthroughs in the organisation’s efforts.

The Initiative is made up of four spearheading partners including Rotary International, whom The British Polio Fellowship have a strong relationship with as well as The World Health Organization, the US Centres for Disease Control and Prevention and UNICEF.

Polio provides vital experience in Ebola battleWith the Ebola outbreak in West Africa claiming the lives of thousands and expected to continue to spread, nations are calling on their Polio eradication experience in order to react to the threat.

Emergency operation centres, modelled on those which have fought Polio in the past, have been rapidly set up in countries affected. However, the outbreak has affected Polio eradication campaigns in areas which are at risk from Ebola.

Despite the northern region recently being ravaged by Boko Haram terrorists, Nigeria has managed huge progress in its battle to eradicate Polio thanks to the Global Polio Eradication Initiative.

So far this year there have only been three cases reported, a decline of over 90% from the 43 cases that were reported in 2013 and Nigeria’s Minister of State for Health believes cases could be cut to zero by next year.

These positive findings are being attributed to better health service provisions in Nigeria, as well as engagement from religious leaders and an overall improvement in the vaccination campaign’s quality.

Despite many areas in the Borno and Yobe states being unreachable by health workers due to unrest, the proportion of unvaccinated children in Nigeria is steadily dropping as the work by The Initiative continues.

Huge Strides in the face of adversity for Nigeria

Further developments from The Initiative include the celebration that Chad has been Polio free for two years. The organisation said this was testament to their government’s hard work and their Reaching Every District (RED) campaign which targets the most in need areas of the country.

Two national campaigns this year have seen 3.5 million children under the age of five protected

against the disease and Chad engaged in multi country campaigns alongside Nigeria, Niger and Cameroon.

With Chad remaining Polio free, Nigeria is now the only African nation where Polio remains endemic; however Polio has been imported to neighbouring nations including Cameroon, Equatorial Guinea, Ethiopia and Somalia.

Chad celebrates two years without Polio

Nigeria has managed huge progress in its battle to eradicate Polio thanks to the Global Polio Eradication Initiative.

The service was conducted by Minister of the Cathedral, Rev. Dr L Whitley who led the congregation in giving thanks for the work The British Polio Fellowship has done to help, support and empower those living with Polio and Post Polio Syndrome (PPS) in Scotland.

The service was a great success and extremely well attended, with the blessing given by the former Roman Catholic Archbishop of Glasgow, The Most Rev. Mario Conte.

Also among the congregation was classical Scottish singer and Patron of The British Polio Fellowship, Dr Moira Anderson who had made the trip to Glasgow from her home on

the Isle of Man. Glasgow Cathedral was the church of both Moira and her husband so it was a particularly significant event. Moira vey kindly also came along and supported us at the Dance Championships at the Albert Hall.

National Trustee Archie Leyden attended the service and he too was delighted with the turnout, “It’s great that so many people have come here to recognise the work of The British Polio Fellowship. The job isn’t done yet though, Post-Polio Syndrome (PPS) is making life harder for a lot of people and The British Polio Fellowship is certainly going to be working harder than ever over the months and years ahead to support them.”

On Sunday 2 November members and friends of The British Polio Fellowship gathered at Glasgow Cathedral for a very special service of thanksgiving to commemorate The British Polio Fellowship’s 75th Anniversary.

Glasgow cathedral service



it’s great that so many people have come here to recognise the work of the British Polio Fellowship.



Do you have strictly Fever?

Four years ago in Manchester many of us couldn’t even dream about doing just that, however, a group of wheelchair users were introduced to the world of Wheelchair Dance Sport by Ray Bulpitt and “Strictly Wheelchair Dancing” was born.

Wheelchair Dance Sport is simply Ballroom, Latin and Social dancing for anyone who can’t dance standing up. You can dance with another wheelchair user or a standing partner using a manual or power chair. We have dancers of all ages from 16 to over 80, husbands and wives, girlfriends and boyfriends, friends, individuals;

so pretty much like any other dance class.

So what is it that we enjoy so much? Freedom of movement, expression and also getting fit at the same time; gaining confidence and being able to join in with friends and family on the dance floor at social functions.

Dancing is great it works your body and works your brain. Don’t panic,

you would not go into a class and be expected to do a complex dance straight off. Like any dance we start using fun dances to build up and develop the skills needed to improve. In many European countries wheelchair dance is even offered as rehabilitation, however, the UK is sadly lacking behind the rest of Europe in this area.

So what dances do we do in our wheelchairs? We do all the usual ballroom dances like Waltz and Quickstep and Latin dances like Samba and ChaChaCha along with some social sequence dances too for good measure.

It’s Saturday night, you’re watching Strictly Come Dancing and you drift off imagining your whirling round the floor dancing a beautiful waltz, or strutting out doing a cheeky ChaChaCha; then you come back to reality and think “Hmm, that’s not going to happen. I can’t even stand up or walk well, let alone dance!”

like any dance we start using fun dances to build up and develop the skills.



Dancing is about using your ability, finding out what works and what doesn’t and adapting the dance to suit, so you are using your strengths and the bits that work. You don’t need special wheelchairs to start off or to try it out, many people will dance in their own wheelchair to begin with. Some clubs have spare sports/dance chairs that people can borrow, and will support people to find funding for their own equipment if they wish to progress further.

Wheelchair Dance Sport at top level is regulated by the International Paralympic Committee (IPC) with over 35 countries worldwide participating in international championships.

There are competitions in the UK too - Manchester hosts a large international competition every year, the Manchester Grand Prix, which gives dancers from the UK a chance to meet dancers from around the world, dance and socialise with each other. Some of

our members compete at IPC level and have travelled as far afield as Russia to compete for Great Britain.

Simply, if you feel you’d like to dance, don’t just sit there, do something about it! Just because your mobility might not be so good, don’t let that put you off. Find a club and have a go. You never know you could be the one waltzing round Blackpool Tower Ballroom next year!

If you want to find out more, visit our website - www.strictlywheelchairdancing.co.uk or you can email us [email protected] You can also keep up to date with us on social media on Facebook.

simply, if you feel you’d like to dance, don’t just sit there, do something about it!



And our survey says…

Keep it up!In the July/August edition of the bulletin, members were asked to take part in a survey about The British Polio Fellowship and its role in their lives. The results of that survey are now in and we would like to thank all of those members who responded with their views.

The survey was undertaken in order to identify ways that The British Polio Fellowship could better serve its members. As time goes on, the threat of Post Polio Syndrome (PPS) looms for many members and feedback from the survey highlighted just how much of a concern this is for many of you and that the role of The British Polio Fellowship in helping members face the challenges of PPS is of particular importance.

The survey showed PPS is by far the most common concern that members have. It is believed that 80% of people with Polio will go on to develop the condition in later life. The survey also made clear that members firmly believe it is the duty of The British Polio Fellowship to support those living with the late effects of Polio and PPS in whatever way we can. We are doing our very best to raise awareness about PPS and to ensure the condition and the needs of members are more widely recognised by the NHS, GPs and other medical professionals and addressed as soon as possible. Too often cases are still misdiagnosed and those with PPS denied crucial aid – this must stop and the charity is doing all it can to make that happen.

The British Polio Fellowship has focused a great deal of effort in

providing members with as much information as possible about Polio, the late effects of Polio and PPS in particular and it has emerged in the survey that more than 90% of respondents are ‘satisfied’ or ‘very satisfied’ with the information that they receive from The British Polio Fellowship. It is great to see that we are on the right track in this area and that we are providing members with the resources that they want in the manner that they want them.

We were particularly keen to discover the extent to which members felt we looked after them and their interests. Taking care of members and supporting them is ultimately the raison d’etre of The British Polio Fellowship and just as important as ever. It was fabulous to hear that 90% of respondents felt we were looking after their interests.

Overall the survey has given positive feedback about the work of The British Polio Fellowship and the impact that it has on members. It has also given us some clear feedback and direction about the

issues we must focus on moving forward. We will be looking at some of this feedback in future editions of the bulletin. For now, it is perhaps not surprising that PPS was consistently mentioned as a primary concern for members and this has really strengthened our determination to do everything we can to support members with PPS both now and in years to come.

In this issue, you can read about how we took our PPS message all the way to heart of government, as we marked this year’s PPS Day with Andy Love MP in the Palace of Westminster. Just part of our wider agenda to lobby MPs on the issue and (we hope) demonstrate that the charity will continue to do everything in its power to put PPS on the social and political agenda.

As it happens, while very much an exercise in internal feedback, the survey did attract some media interest, with Ted invited to speak about the survey, Polio and PPS on Radio Swindon on 15 September for a ten minute slot on their regular Monday afternoon health slot ‘Feeling Good’.

it is believed that 80% of people with Polio will go on to

develop PPs in later life.


FelloWshiP merchAnDise

29

British Polio Fellowshipmerchandise

This compact pillbox can help you to manage your medication and is helpful if you need to take medication while on the move. The built-in pill-cutter is especially useful for large pills that are difficult to swallow.

When living with the late effects of Polio and PPS, pacing is essential, whatever your level of mobility. This simple pedometer will allow you to keep track of the number of steps you are taking in any one day and help you to pace yourself.

This very compact and lightweight reusable shopping bag in its zip pouch fits any handbag or jacket pocket. It is useful for small shops or when purchasing bits and bobs on the go.

This magnetic fridge notepad can be used to write down shopping lists or things you need to remember and is also a reminder of how to get in touch with The Fellowship.

manage your medication Pace yourself

Keep it light Don’t forget

This quality mug makes an ideal gift and has a distinctive and contemporary style. Perfect for tea or coffee.

Anniversary mug with logo

Never miss a date again! This ‘Sowing the seeds of hope’ wildflower calendar brightens up your wall and keeps you organised.

2015 calendar



To mark our 75th Anniversary, we have produced some useful items for our members to purchase at a decent price. Don’t forget that you can encourage other family members and/or friends to purchase an item to help with our fundraising and to get our name out there.

ProDuct Price eAch QuAntity cost

Pillbox with Cutter £3.50

Pedometer £2.99

Reusable Shopping Bag and Pouch £1.99

Magnetic Fridge Notepad £1.90

Anniversary Mug £4.95

2015 Wildflower Calendar £4.95

Name and address details for delivery ..........................................................................................................................

.........................................................................................................................................................................................

.........................................................................................................Postcode ...............................................................

Email ............................................................................................. Telephone ...............................................................

how to pay

I wish to pay by cheque and enclose a cheque made payable to The British Polio Fellowship

I wish to pay by credit card

Name on card ................................................................................................................................................................

Card number

Start date Expiry date 3 digit security number

Alternatively, you can ring your order through to Freephone 0800 018 0586.

31

Patiently Waiting 155 x 108mm 10 cards for £4.05 inl p&p Greeting: Season’s Greetings

2

White Christmas Tree 155 x 108mm 10 cards for £4.05 inl p&p Greeting: Best Wishes for Christmas and the New Year

1

Playing in the Snow 150 x 150mm 10 cards for £4.05 inl p&p Greeting: Merry Christmas and a Happy New Year

3Star Shines Brightly 150 x 150mm 10 cards for £4.05 inl p&p Greeting: Best Wishes for Christmas and the New Year

4

how to orderBy post: see form overleaforder line: 0800 018 0586 (open 9am to 5pm monday to thursday, 9am to 4pm Friday)order online: www.britishpolio.org.uk






fund

rais

ing

new

s$

christmas cards 2014

White Christmas Tree

Patiently Waiting

Playing in the Snow

Star Shines Brightly

2nd December 2014.

The British Polio Fellowship is

getting its voice heard Over 1,000,000 people have now seen the comments of Ted Hill MBE, CEO of The British Polio Fellowship as he adds his voice to calls for greater disabled access to Britain’s top tourist attractions.

on disability issues

http://www.telegraph.co.uk/travel/destinations/europe/uk/11075211/Disabled-access-to-UK-attractions-criticised.html

http://www.independent.co.uk/travel/news-and-advice/charities-call-for-the-uks-top-tourist-attractions-to-become-wheelchair-accessible-9708385.html

Research conducted by Vitalise discovered that out of 52 of the nation’s top 100 attractions nearly two thirds (63%) were not fully wheelchair accessible and a quarter (25%) had no disabled car park spaces at all. Upon reading these findings, Ted got in touch with the national press to voice his concern about this on behalf of The British Polio Fellowship.

Ted’s comments were featured in leading national newspapers, The Independent and The Daily Telegraph, with other national

journalists expressing an interest in getting in touch and having further dialogue with the charity about disability issues. “Adding the voice of The British Polio Fellowship to national debates is vital,” explained Ted; “All too often, Polio is viewed as a forgotten disease and it is important that this perception is challenged. Boosting awareness of The British Polio Fellowship reminds the public that there are approximately 120,000 people who have had Polio and are now affected by Post Polio Syndrome (PPS) living in the UK in need of support.

“Issues like disabled access to tourist attractions are as important for those with the late effects of Polio and PPS as for any other group with mobility issues. Indeed with the onset of PPS, many members will become increasingly concerned about disabled access and I see it as the role of the charity to speak up on their behalf.”

Ted’s comments can be seen by clicking the links below. Please feel free to ‘like’ and ‘share’ the articles on social media and you too can help spread the word.

issues like disabled access to tourist attractions are as important for those with the late effects of Polio and PPs as for any other group with mobility issues.

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75th Anniversary raffle PriZe DrAW Winners

The prestigious first prize, a week’s holiday for six people in the Burnham Bungalow and £250.00 Marks and Spencer’s vouchers, has been won by Mrs J Keeling from the West Midlands. Second prize, a trip for two people to see Arsenal vs. Newcastle United in the Premier League’s very own hospitality box was won by Mrs R Khanna, also from the West Midlands.

Third prize was a prestigious Mont Blanc fountain pen and that was won by Mrs A Stracey, from Darlington. Congratulations to all of our winners.

"A huge well done to all the lucky winners of the raffle,” said Ted Hill. “This year's raffle has been exceptional, we have been supported by a really dedicated network of volunteers who have worked tirelessly to sell tickets and raise money for The British Polio Fellowship. The success of things like this is really down to the

fantastic collective spirit among members, and I would like to thank each and every person who lent a hand."

A full list of winners can be seen overleaf. Once again - congratulations and thanks to everyone for taking part from the team at British Polio.

Many thanks to everyone who took part this year. We are hugely grateful for your support and now it gives us great pleasure to announce the winners of The British Polio Fellowship’s 75th Anniversary Raffle! Our thanks also to Theresa Lowman, member and ex-employee of The British Polio Fellowship, who kindly agreed to make the draw.

the success of things like this is really down to the fantastic collective spirit

among members.


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Windmill House, a sheltered housing scheme have The British Polio Fellowship as their nominated charity for 2014, but recently the collecting box was stolen by an opportunist thief much to the residents anger and dismay. This did not deter them however, and they held this fundraising event to make up for the stolen money. They played various games and had afternoon tea and held a couple of raffles as well. Members of the Branch Committee were invited and a thoroughly good time was had by all.

Dorothy Cartwright Branch Chairman, Blackpool & the Fylde

puts the fun into fundraising

PriZe ticKet nAme AreA memBer

1st 105351 Mrs J Keeling West Midlands Yes

2nd 104196 Mrs R Khanna West Midlands Yes

3rd 022734 Mrs A Stracey Darlington Yes

4th 017285 Mrs D Holt Bridgend Yes

5th 101724 R Edmett Stevenage No

6th 102466 S Fielding Northants No

7th 074555 Miss B Copcutt Maidenhead Yes

8th 007906 Mr W Ogwang London Yes

9th 045484 Mr R G Jones Norwich Yes

10th 068939 Mr P Wall London No

11th 053057 Mrs J Osborne Hampshire Yes

12th 072168 Mrs A Chad Middlesex Yes

13th 052346 Ms D Byrne-Jones Devon No

14th 052346 Mrs A Gray Ripley No

15th 112779 Ms H Bowen Pontrobert No

Blackpool Branch

Below is a photo from a recent fundraising event held for the Blackpool Branch of The British Polio Fellowship.

And the winners are...

Blues make a grand show of support

The donation was presented on the night by the Chairman of the Former Players Association, Tom Ross, and accepted on The British Polio Fellowship’s behalf by our newly elected Chair of Trustees, Bryan Rowley.

The donation comes in the wake of both BCFC and The British Polio Fellowship joining forces earlier this year to present the Barbara Wood Citizenship Award to Jeff Hall’s widow, Dawn Clements.

“This was one of my first engagements as the Chair of Trustees. It was a pleasure to start by further developing The British Polio Fellowship’s relationship with Birmingham City,” said Bryan Rowley. “I would like to thank Tom Ross of the Former Players Association, for such a generous donation. The club and the fans have supported us in our 75th Anniversary year and we are very much looking forward to continuing to work with the club and the Former Players Association in the future.”

The evening was the latest in a series of events where the club has supported The British Polio Fellowship this year. In April, Birmingham City invited our fundraisers to join them for a match against Blackburn Rovers and on 25 June, Dawn Clements was presented with the Barbara Wood Award at St Andrews. On 9 October, the charity was able to thank the club personally by inviting Ian Dutton to the Dance Championships at the Royal Albert Hall to show their appreciation for the club’s ongoing support.

“As a club, Birmingham City is proud of its charitable work and supporting The British Polio Fellowship is a great way to honour one of our own while helping people still living with Polio today,” said Ian Dutton, Head of Commercial at Birmingham City FC. “The British Polio Fellowship does fantastic work to help people living with the effects of Polio and we feel that given our own history and the very real empathy fans continue to feel for Jeff Hall, it’s right

for the Former Players Association to support them in this way. It was a pleasure to meet Bryan at the Albert Hall and an honour to welcome him to St Andrew’s on Friday.”

St Andrews welcomed back some of the club’s football legends at the event, with England’s first million pound player Trevor Francis in attendance to share his Blues memories and with other stars who followed in Jeff’s footsteps also in attendance.

“The Former Players Association began as an All Stars Charity Fundraising Team of Ex-Players in 1991 and it is a pleasure to be able to support The British Polio Fellowship in this way,” said the Chairman of the Former Players Association Tom Ross. “Over the years we have been able to raise a great deal of money for many deserving charities. We aim to build a bridge between the club, the supporters and its history and Jeff Hall is an important part of that history.”

On Friday 24 October the Former Players Association of Birmingham City Football Club (BCFC) kindly donated £1,000 to The British Polio Fellowship. The donation comes 55 years after Blues’ legend Jeff Hall died of Polio in 1959.

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Again my special friend and Partner with the collection Tanya Cooper who has been helping me for more than 10 years sang the praises of why people needed to support our charity. I am so lucky to have her helping me as nothing is too much trouble for her.

This time we worked in groups and our three young people Joel Abraham, Holly Harper plus Anisah Soofilob did justice on how young people can enthusiastically collect for our charity. We were also again ably supported by Cathy Simmonds and her daughter Helen, plus Judith Barker, Meryl Abraham and David Tilley.

I went with the young group to various restaurants and pubs and

we were successively supported by most. L'artista gave us a donation of £30 for a meal which my family thoroughly enjoyed and I handed a cheque for that amount to our charity.

The Moon Under Water Manager (Weatherspoon), Kwarme, has been

a great friend of ours and allowed us to collect with his full kind support. Nero and The One Bell Pub and others also allowed us to collect.

Lastly I would like to thank Linda and everyone else from our Head Office for always giving us 100%.

David Abraham

The preparations went well for our Polio collection on the 12 July 2014 with 10 of us collecting. Everyone was enthusiastic and we managed to collect £310.16.

collection in Watford

Forgive me for not shaking handsThe story of a child excluded from school for wearing a splint by Barbara Blackston Huntley.

Barbara is kindly offering members of The British Polio Fellowship the opportunity to purchase her book at the discounted price of £5.00, if ordered before 15 December 2014. Stocks are limited, so this offer can only be made on a ‘first come, first served’ basis.

Book Order Form: Forgive Me For Not Shaking Hands, by Barbara Blackston Huntley

Qty item unit Price total

Forgive Me For Not Shaking Hands £7.00

Post & packing £1.92

Total Paid £

Please use block capitals

Name: .....................................................................................................................

Address: ..................................................................................................................

................................................................................................................................

Post Code: ................................................. Tel:...............................................................

Email: ......................................................................................................................


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We would like to offer our sincere condolences to the families and friends of the following people:

Mr Malcolm Hill member Hertfordshire

Mrs Joyce Downing member Devon

Mr Joseph Gaughan non member Lancashire

Mrs Celia Hermione Batey member Yorkshire

Mrs Rita Wiseman non member Worcestershire

Thank you to everyone who has made a contribution in their memory.

If you would like to make a donation in memory of a loved one, please contact Linda on 0208 836 3689 or email [email protected]

in memoriamDonationsfrom trusts and foundationsWe would like to thank the following trusts and the Big Lottery Fund for their recent very generous support for the work of The Fellowship:

Albert Hunt Trust

Raymond Shaw Trust

David Laing Foundation

Laspen Trust

Christopher Laing Foundation

Helianthus Charitable Trust

Dorothy Howard Charitable Trust

Catherine Cookson Charitable Trust

clAssiFieD ADverts

For sAle SUZUKI WAGON R GL 1.3 AUTO 2004 (54)10.000 MILES. A years MOT. Drive from wheelchair or drivers seat. Use hand or normal controls. Inner ring accelerator. Right hand brake. Electronic parking brake. Lightened power steering. 2 seats (driver front passenger). Locking system for driver and/or rear passenger’s wheelchairs. Instructors foot brake. Immaculate condition.£6.000 o.n.o. S.E. London. Contact 020 8303 4913.

For sAle Karma Electronic Wheelchair + power pack. 2 years old. Colour Black instructions included.Was £1.000 will accept £400. Contact 01637 876723. Cornwall.

For sAle Red Mobility Scooter - Sterling Elite X5. Battery charger and basket. 4 years old. New battery 2013. Full service record. £250.00 o.n.o. Contact: 01249 812504 after 6.00pm. Wiltshire area.

For sAle Invacare Auriga scooter. Purchased in 2010 battery charger and basket included. Colour Blue. £100.00 o.n.o. Contact 01249 812504 after 6.00pm. Wiltshire area.

For sAle Jazzy 1103 Wheelchair. Serviced regularly. Has new wheels and seat cover + batteries. Was £500 will accept £100.00 o.n.o.Contact: 01249 812504 after 6.00pm. Wiltshire area.

For sAle A.J Way Clivedon Duel Electric Recliner. 2 years old. In very good condition hardly used. Chair was made to rise not tip. Reclines to virtually flat. Colour Brown. Very heavy and very stable. Cost £1.650. Will accept £800 o.n.o Wiltshire area. Contact: 01249 812504 after 6.00pm.


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You can always make a donation to The British Polio Fellowship from your mobile phone, just follow these simple steps:

Text: BRPF39 £ (amount you wish to donate), maximum amount of £10.

To: 70070 It’s as simple as that! The amount you have donated will then be charged to your mobile phone account.

Give as you liveAs The British Polio Fellowship is registered with Everyclick, when you do your online shopping at selected stores, around 3-4% of the cost of your total shop will be donated to The British Polio Fellowship.

In some cases this could be more as the amount is dependent on the discount that has been agreed with the supplier.

There are over 3,000 stores participating in this scheme, such as John Lewis, Waitrose, M & S, Amazon, Debenhams and many, many more.

All you have to do is visit the website www.giveasyoulive.com and start shopping. But don’t forget to nominate The British Polio Fellowship as your preferred charity.

Giving by text is just so easy


our charity partners

These pages are dedicated to the commercial companies who pay The British Polio Fellowship a handsome commission if you buy their products and services. This is a tremendous way for you to donate to The Fellowship simply by selecting products you would be buying anyway.

Our charity partners

Having a spring clean?Do you have an old phone that you can

give to Recycle 4 Charity? To date we have

raised over £1,500 from mobile phones

and printer ink cartridges sent for recycling

and hope to raise even more this year.

If you would like a recycling bag please

phone 0208 836 3679 or log on to the

following website and register to receive

your bags direct.

www.recycle4charity.co.uk

Check out the Fellowship’s ebay site,

grab yourself a bargain and help The

Fellowship at the same time.

The goods on offer change every 10

days or so keep looking.

Go to http://pages.ebay.co.uk/

ebayforcharity/

Click find a charity to support and

search for British Polio Fellowship

Give your life a lift®

Enjoy the home you love

Call now on freephone0800 085 5182for a free no obligation quote

•Slimline fold-away design•Safe and reliable• Easy to use controls•New or reconditioned•Direct from the manufacturer•Next day installation available

Why compromise your lifestyle and freedom because of difficulty getting up and down

the stairs?

PLEASE QUOTE REFERENCE: POLIO 60410

chArity PArtner


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The new scheme will give this group of people a chance to get an inflation-proofed, additional State Pension if they make a lump sum Class 3A Voluntary National Insurance contribution. This would boost their pension income by up to £25 per week.

The scheme is designed to give pensioners in the current system the chance to increase their State Pension in retirement. It will also give people with small amounts of pension savings a secure way of achieving an income for life.

The amount people will pay to receive the additional pension will depend on their age, with rates going down as someone gets older. For example, to get an extra £1 per week State Pension for life, the lump sum payment for a 65-year-old would be £890, compared to £674 for someone who is 75.

The additional State Pension will provide a guaranteed, index-linked return and will be particularly suitable for women who, on average, will draw the higher pension for longer. It could also help self-employed workers who currently only qualify for the basic State Pension.

The State Pension top-up can also be inherited, so a surviving spouse or civil partner will be entitled to at least 50% of the additional State Pension.

In October 2015 a new top-up scheme will be introduced to allow existing pensioners and those who will reach State Pension age before 6 April 2016 to increase the amount of pension they get.

A neW State Pension Scheme

A State Pension top-up calculator is available online, which shows the lump sum contribution needed to increase pension income by between £1 and £25 per week. Visit https://www.gov.uk/state-pension-topup

(Source: Department for Work and Pensions)

People can pre-register their interest in the scheme by emailing [email protected] or by calling either: 0845 600 4270 from land lines or 0345 600 4270 from mobiles.


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Branches and GroupsAs I have travelled around the country giving talks to Branches and Groups I have been struck by the warmth, humour and camaraderie shared by members. Over and over again I have been told of how important membership is, not only for the meetings and social events, but also for the sense of belonging, mutual support and understanding.

A very positive outcome of my talks over the past year has been introducing Central Office members to their local Branch or Group - as a result, friendships have been cemented and contacts sometimes reconnected. I have met members who have been friends since childhood, couples who met through The British Polio Fellowship and also

dedicated, longstanding members who have no direct connection to Polio, but have simply been happy to volunteer with a Branch or Group for many years.

To find out if there is a Branch or Group in your area, contact Denise in Support Services.

Laura Skorupa, Information Officer

With a dedicated Branch and Regional News section in every bulletin, members can keep abreast of what’s happening in the Regions and be reminded of the role Branches and Groups play in the Fellowship.

Patient and public voice is a key driver of service improvement in the NHS. However, the survey of charity staff, volunteers, people affected by neurological conditions and their carers finds that the majority of people feel that local influencing has become more difficult since the creation of new local health and care structures in 2012-13.

The survey found that:

47% of people feel that local influencing has become more challenging since the changes to the health and social care system came into force, while 9% feel it has become easier.

59% of campaigners have no engagement with CCGs, 63% with HWBs.

The report makes a range of recommendations to improve engagement with the reformed health and care system. Among other recommendations, the report:

calls on NHS England to develop support, tools and resources to make the localism agenda work for people affected by neurological conditions.

calls on Public Health England to continue to develop the data available on neurological conditions, services and outcomes through the Neurology Intelligence Network and ensure this is linked to the activities of the Neurosciences Specialised Commissioning Clinical Reference Group and Strategic Clinical Networks.

calls on local commissioners to appoint a neurological conditions lead and conduct a neurological Joint Strategic Needs Assessment.

calls on neurological charities to sign a pledge for working pan-neurologically at the local level.

neurological Alliance: is localism working for people with neurological conditions?A new Neurological Alliance survey report shows low levels of public engagement with local health structures such as Clinical Commissioning Groups (CCGs) and Health and Wellbeing Boards (HWBs).

See the full report at http://www.neural.org.uk/updates/241-localism%20survery%20september%202014


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PPs Post Polio Syndrome: A practical guide (£5 + £2.50 P&P)

Post Polio Syndrome: An introduction

Pacing for Activity & Exercise

List of Healthcare Professionals

Going Into Hospital

Cold Intolerance

Complementary Therapies

Medication

Palliative Care

Dental Care & Anaesthesia

BPF Support Services

Healthy Eating

Swallowing Problems

Pain & how to manage it

Breathing Problems

orthotics List of Orthotics Manufacturers

Orthotic Services

Callipers and Insoles through the NHS

Orthopaedic Footwear through the NHS

Problems with Footwear and Orthoses?

Orthotics and Surgical Footwear thro’ the Private Sector

Benefits

Disabled Facilities Grants Guide

Disability Living Allowance – Guide to filling in the form (upgrades only)

Attendance Allowance – Guide to filling in the form

useful organisations contact list

Welfare Rights, Benefits & Legal

Other Advice & Information

Polio & Post Polio Syndrome Organisations

Other Health Matters

Employment, Leisure & Interests

Transport, Mobility & Equipment

Life, Home & Care

Grants & Funders

Other (Please state and we will try to find!)

..........................................................

..........................................................

..........................................................

..........................................................

In addition to the information and support we provide over the phone, the Support Services team also produces a wide range of information leaflets and factsheets that can be sent to you on request. If you would like to receive any of these, please tick the appropriate box(es) below. All leaflets are free except Post Polio Syndrome: A practical guide.

Name ...............................................................................................................................................................................

Address ............................................................................................................................................................................

.......................................................................................................................Postcode ...................................................

Tel ...........................................................................................................................Age ...................................................

Please send this form to Support Services, British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex HA4 6SE. Phone: 0800 0180 586 Email: [email protected]

support servicesInformation available from


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If you are living in a household in which no-one is eligible for the government payment, you are on a low income and have extra need for heat because of your Polio, you should complete the Heating Grant application form in this edition of the Bulletin and return it to Central Office by Monday 1 December 2014 at the FREEPOST address below.

All applications from eligible members will be considered, so please tell us how the cold affects you and your need for heating in the appropriate section on the form.

Branch members’ applications may be forwarded on to the Branch to which they belong, but please send all Heating Grant application forms to Central Office in the first instance. If you are unhappy with any decision, you may appeal to Central Office.

All Fellowship Heating Grants will be considered during November and December. Grants are usually paid at the end of January/beginning of February. Payments will be made directly into the bank/building society account nominated by the applicant.

Please ensure that you complete ALL sections of the form and that

bank details are up-to-date and correct. If this is the first Fellowship grant you are applying for you will need to enclose a note from your GP confirming that you have had Polio.

Do make sure completed application forms arrive before Monday 1 December 2014. Applications that arrive too late may be refused.

Keep warm-save moneyAre you paying more than you need for your gas and electricity? If you haven’t yet thought about changing your energy supplier, you could be. Energy Best Deal is a quick guide to getting the best deal on your energy supplier by shopping around and making the most of the help available. The guide includes information about comparing prices, government schemes and where to get help and advice about saving energy and money. Free copies are available from your local Citizens Advice Bureau or may be accessed at the following link:

http://www.citizensadvice.org.uk/fsfl_projects_energybestdeal

the Warm home Discount schemeThis winter (2014 to 2015), you may be able to get a £140 discount on your electricity bill through the Warm Home Discount Scheme.

This won’t affect your Cold Weather Payment or Winter Fuel Payment. It is a one-off discount on your electricity bill, usually granted between October and March.

You may also qualify for the discount if you use a pre-pay or pay as you go electricity meter. Your electricity supplier will be able to tell you how you’ll get the discount if you’re eligible. Who is eligible? In winter 2014/15, you may qualify for the Warm Home Discount if on 12 July 2014 (the qualifying date) you are:

receiving the Guarantee Credit element of Pension Credit (even if you get Savings Credit as well)

your name (or your partner’s ) is on the electricity bill

your supplier is part of the scheme

For the 28th successive year, the British Polio Fellowship is pleased to be running the popular Winter Heating Grant programme. The aim of this scheme is to supplement the cost of additional warmth needed during the winter months by people living with Polio in households not eligible for the government Winter Fuel Payment.

Winter warmthHeating Grants 2014

Freepost RLSJ-BAGS-BUCT, The British Polio Fellowship (HG), Eagle Point, The Runway, South Ruislip, Middlesex, HA4 6BR.


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If you don’t qualify... Some energy suppliers can offer the discount to vulnerable people (eg those on a low income).

Each supplier has their own rules about who else (known as the ‘broader group’) can get this help.

Check with your supplier if you meet their rules for help and how to apply for it.

how to claim the Warm home Discount If you qualify

If you qualify for the discount, you’ll get a letter this autumn/winter telling you one of the following:

you don’t have to apply for the discount – you’ll get it automatically

you must apply for the discount before the deadline – the letter will tell you how

You will receive your letter by 24 December 2014 at the latest.

If you don’t receive a letter but believe you qualify, you can write to the Warm Home Discount team:

Warm Home Discount Team Pink Zone, 1st Floor, Peel Park, Brunel Way, Blackpool. FY4 5ES.

If you don’t qualify If you don’t qualify for the discount you may be able to apply directly to the energy supplier for help.

more ways to save this winterAs well as switching to a cheaper provider, this checklist includes other ways to cut the costs: Dual fuel (gas and electricity from the same supplier) isn't always the cheapest option It is a good idea to compare the cost of the cheapest dual fuel supplier with separate cheap gas and cheap electricity suppliers.

Switch to monthly direct debit Fixed monthly direct debit payments (where you pay a fixed estimate each month) can save you up to 8%, as companies are sure you won’t default, and they earn interest on any overpayments (which should be refunded at the end of the year). Do a meter reading every time Every time you receive a bill, do a meter reading: don’t rely on your energy provider’s estimate, as these are often way out. If they’re under-billing, you'll have a big whack to pay at the end of the year, if they're over-billing, then they've got your cash unfairly. Switch to your company’s internet tariff If you have internet access, switch to your company’s internet billing. It will usually save you up to 10% over the standard tariff, providing you’re prepared to be billed online. Are you on a pre-payment meter? Those on pre-payment meters often pay more than everyone else. If possible you should try to switch to a billed meter.

Ebico (call 0800 458 7689 or visit www.ebico.co.uk) has historically been competitive on pre-payment tariffs, though some other major suppliers are now starting to cut costs to pre-pay customers too. What can your energy supplier offer? It’s always worth checking with your energy supplier to see if they offer grants towards home insulation. Just use less energy! Cutting down on your energy consumption is easier than you think. Turn lights off when you leave a room, defrost the fridge and check it isn’t on too high, don’t leave electrical goods on standby….Look at local insulation schemes or government heating and home insulation schemes. For more information, contact the Energy Saving Advice Service on 0300 123 1234 (England and Northern Ireland), 0808 808 2282 (Scotland), 0800 512 012 Option 3 (Wales) or visit www.energysavingtrust.org.uk

Participating energy suppliers

Atlantic

British Gas

Co-operative Energy

EDF Energy

E.ON

Equipower (Ebico)

Equigas (Ebico)

First Utility

Scottish Power

M & S Energy

npower

Sainsbury’s Energy

Scottish Gas

Scottish Hydro

ScottishPower

Southern Electric

SSE

SWALEC

Utility Warehouse

Don’t forget…Our factsheet, Cold Intolerance A guide for people with polio or Post Polio Syndrome (PPS). Contact Support Services for a copy.

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support services

Application for a heating grant for Fellowship members with Polio in the UK, living in households NOT eligible for the government Winter Fuel Payment. (Only one application per household, even where there is more than one person with Polio.)

Please complete the following in BLOCK CAPITALS and return it FREEPOST to Central Office:

FIRST NAME:……………………………LAST NAME:………………………………(Mr/Mrs/Miss/Ms)

ADDRESS:………………………………………………………………………………………………….

…………………………………………………………………………………………………………….

…………………………………………………………………………………………………………….POSTCODE:……………………………. . TELEPHONE NO:………………………………………………

DATE OF BIRTH:…………………………AGE now:……… AGE when you contracted Polio:…………

AGES OF OTHER MEMBERS OF HOUSEHOLD……………………………………………………………

MEMBERSHIP INFORMATION

Are you a member of The Fellowship? YES/NO (please circle). If no, we will send you membership details. Only members of The Fellowship are eligible to apply for this grant.

If yes, give details of which Branch or Central Office:.………………….……...……….………………..

Are you, or a close relative on a Branch or National Committee? If so give details.…………………..…

………………………………………….………………………………………………………....................

PAYMENT DETAILS – payments will be made directly into your bank or building society account or that of someone you nominate:

Name of bank or building society………………………………………………………....……………....

Your name (as shown on your account) or that of the person you have nominated to receive your payment:…………………………………………………………………………………………………..

Branch sort code

Account Number………………………………………………………………………………………….

If you do not have access to a bank or building society account, who should we make a cheque payable to?………………………………………………………………………………………………... (Please note it may take longer to receive your payment by cheque)

Data Protection StatementThe information that you provide on this form will be kept in accordance with the Data Protection Act 1998. We will hold only such information as we need to in paper and on computer records. As your application is confidential we will not discuss it with anyone outside The Fellowship. We do not pass your information on to any other organisations without your consent.

To the best of my knowledge, nobody in my household is eligible for the government Winter Fuel Payment for 2013 (no-one born on or before 5 July 1952 in household), the information on this form is correct and I am happy for The British Polio Fellowship to hold this information for Heating Grant purposes:

YOUR SIGNATURE……………………………………………………………… DATE…………………

The British Polio FellowshipHEATING GRANT APPLICATION FORM 2013

$

+

14

14


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/PPs in the uK, living in

/PPS.)

Please complete the form overleaf

46


supp

ort s

ervi

ces

$

Section A: INCOME

1. EARNED INCOME

If you/other people in your household are working OR have other non-benefits income (including pensions), please put what you/other people in your household earn per year (before tax):

You: £………………………. Other: £……………………….

2. MEANS-TESTED BENEFITS (please tick each benefit you/other people in your household receive) You Other

Income Support

Pension Credit

Income Based Job-seekers Allowance

Child Tax Credit or Working Tax Credit

Housing Benefit

Council Tax exemption / assistance (not just Disability/Single Person Reduction)

3. OTHER BENEFITS (please tick each benefit you receive): You Other

Disability Living Allowance (DLA) or Personal Independence Payment (PIP)

– Mobility Component DLA Lower Rate or PIP Standard Rate £21.00

DLA Higher Rate or PIP Enhanced Rate £55.25

DLA Higher Rate or PIP Enhanced Rate - used for Motability car

– Care (DLA)/Daily Living (PIP) Component DLA Lowest rate £21.00

DLA Middle Rate or PIP Standard Rate £53.00

DLA Highest Rate or PIP Enhanced Rate £79.15

Incapacity Benefit (IB) or Employment and Support Allowance (ESA)

Other benefits (please say which):

Section B: ABOUT HOW THE COLD AFFECTS YOU. Please tell us in the space below how cold affects you and any Polio/PPS-related symptoms, what you have to do in order to keep warm, how mobile you are, how many hours a weekday you typically spend at home and anything else you think we should know about how the cold affects you and your need for heating. Please continue on an additional sheet if necessary.

Please return this form to the address below.If this is your first grant application we will require a GP note to confirm your history of Polio.If you are a Branch member we may forward your application to your local Branch. If you or a close relative are on a Branch or National Committee, Central Office will need to consider your application, so also post it to the address below. We reserve the right to contact you should we need more information to assess your application.

Freepost RLSJ-BAGS-BUCTTHE BRITISH POLIO FELLOWSHIP (HG)

Eagle Point, The RunwaySouth Ruislip, Middlesex HA4 6BR

No stamp needed but if you use a stamp it will save on our postage costs.Please return this form by Monday 2 December 2013 (late applications may not be processed). $

suPPort services


supp

ort s

ervi

ces

$

Section A: INCOME

1. EARNED INCOME

If you/other people in your household are working OR have other non-benefits income (including pensions), please put what you/other people in your household earn per year (before tax):

You: £………………………. Other: £……………………….

2. MEANS-TESTED BENEFITS (please tick each benefit you/other people in your household receive) You Other

Income Support

Pension Credit

Income Based Job-seekers Allowance

Child Tax Credit or Working Tax Credit

Housing Benefit

Council Tax exemption / assistance (not just Disability/Single Person Reduction)

3. OTHER BENEFITS (please tick each benefit you receive): You Other

Disability Living Allowance (DLA) or Personal Independence Payment (PIP)

– Mobility Component DLA Lower Rate or PIP Standard Rate £21.00

DLA Higher Rate or PIP Enhanced Rate £55.25

DLA Higher Rate or PIP Enhanced Rate - used for Motability car

– Care (DLA)/Daily Living (PIP) Component DLA Lowest rate £21.00

DLA Middle Rate or PIP Standard Rate £53.00

DLA Highest Rate or PIP Enhanced Rate £79.15

Incapacity Benefit (IB) or Employment and Support Allowance (ESA)

Other benefits (please say which):

Section B: ABOUT HOW THE COLD AFFECTS YOU. Please tell us in the space below how cold affects you and any Polio/PPS-related symptoms, what you have to do in order to keep warm, how mobile you are, how many hours a weekday you typically spend at home and anything else you think we should know about how the cold affects you and your need for heating. Please continue on an additional sheet if necessary.

Please return this form to the address below.If this is your first grant application we will require a GP note to confirm your history of Polio.If you are a Branch member we may forward your application to your local Branch. If you or a close relative are on a Branch or National Committee, Central Office will need to consider your application, so also post it to the address below. We reserve the right to contact you should we need more information to assess your application.

Freepost RLSJ-BAGS-BUCTTHE BRITISH POLIO FELLOWSHIP (HG)

Eagle Point, The RunwaySouth Ruislip, Middlesex HA4 6BR

No stamp needed but if you use a stamp it will save on our postage costs.Please return this form by Monday 2 December 2013 (late applications may not be processed). $


Please return this form by 1 December 2014 (late applications may not be processed).

received):

5556.75

5554.45

81.30


Two two-bed apartments adjoined by balcony door. (Owner is a Fellowship member). Peaceful and relaxing. One apartment is adjusted for wheelchair use with ramped access and the other has five steps to access. Both are level throughout. Will let together or separately. Both apartments have two bed settees, so maximum occupancy is six per apartment. 2 swimming pools and 2 children’s paddling pools. Airport transfers arranged.

Bookings from £100 per week. Tel: 07946 510900, 01422 206106 or email: [email protected] for photos, dvd and full details.

TurkeyThe sleepy seaside village of Akbuk, near the resort of Altinkum, 50 mins drive from Bodrum airport.

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Contact Shirley on 01953

451620 or email:

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uk

TURKEY, sleepy seaside village of Akbuk, outside seaside resort of Altinkum, 50 mins drive from Bodrum airport. Two two-bed apartments adjoined by balcony door. (Owner is a Fellowship member and permanent wheelchair user). Peaceful and relaxing. One apartment is adjusted for wheelchair use with ramped access and the other has five steps to access. Both are level throughout. Will let together or separately. Both apartments have two bed settees, so maximum occupancy is six per apartment. 2 swimming pools and 2 children’s paddling pools. Airport transfers arranged. Bookings from £100 per week. Tel: 07946 510900, 01422 206106 or email: [email protected] for photos, dvd and full details.

Your ad could be here, reaching over

9,000 members, their families and

friends. Contact Shirley on 01953 451620

or email: [email protected]

Cornwall - Nr Truro

Two specially converted detached barnson a family farm. Sleep 4 to 6 people.

Both fully wheelchair accessible.Electric bed, air mattress, hoist and

rise/recline chairs available.All bedrooms have ensuite wetrooms or

bathrooms. Care available.For details

call 01726 883240 / 07762 173860or visit www.treworgansfarm.co.uk

Irton House Farm The Lake District

Fully accessible, spacious 4 star self catering accommodation

Stunning views over lake & mountains in National Park

Cottages sleeping 2-6, all with wet roomsIdeal for exploring the beautiful North LakesOpen all year, friendly owners in residence

Call 017687 76380 www.irtonhousefarm.com

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In our specially converted and detached barns, wecan provide free use of electric beds, air mattresses,

hoists, shower chairs, riser recliner chairs plus awide range of extra equipment to make your stay

easier and more comfortable. Care is also availablelocally. We are only 15 mins from Truro and 30

mins from the Eden Project, making Treworgans theideal place to explore this beautiful county.

Cornwall. Near Truro

01726 883240 / 07762 173860www.treworgans.co.uk

memBers’ letters AnD vieWs

Every issue we have a bunch of carnations, courtesy of Le Tourneurs, to send to the writer of one letter, so send in your letters NOW!

48

Star Letter


Ever since the article on Michael Anderson’s stunning portrait, ‘Nobody told me it would come back’ appeared in the bulletin, it has stirred a great deal of interest among members and your views continue to come in. After Maureen Fenner’s article in the last issue, this time it is the turn of Steve Tomlin.

Who Knew?

Who knew about PPS? I did and so did the experienced nursing staff but the knowledge was lost during the ‘modernisation’ of the Health Service.

I am a 64 year old man and I had Polio in 1955, which I think was the UK’s last major outbreak before inoculation. Two years in hospital then a lifetime of coping with the result, it’s the usual package, general weakness, scoliosis, rib hump, shoulders askew, arms which don’t quite work and the last sixteen years relying on a BiPAP while PPS cuts down my mobility.

At age 13 I was living with my great family in Essex, I had been trotted around most specialist hospitals in southern England by my father who was trying to find a surgeon to give me a spinal fusion before my spine rotated. My other weaknesses, particularly my chest and breathing gave me the thumbs down, if you can put your thumb down that is, in the end Dad took me off to see Professor Rolph in Oswestry.

The Proff. took me in to Baschurch Ward to give me three months of tests.

Baschurch was a typical open ward of the time, about 40 beds in two rows with one TV at the end. This was the boys ward for ages from 11 to 15. Some long stay, some short all of them in some sort of bodily distress. This is where they broke

short legs and stretched them on a wire frame, most were in some sort of plaster after a week or so, I was one of the few on his feet. So I was roped in to help the nurses with teas and general errands, I drew the line at bedpans. Eventually I was promoted to bed making and shown how to do hospital corners.

Sister Nichols (I think that was her name but memory fails) the ward Sister, was the boss and much revered by the staff and nurses. She was a tall, slim, white haired matriarch who ran the ward as her personal fiefdom. Everyone on the ward from the dedicated cleaners to the staff nurses had their place in the hierarchy and knew it.

I became a bit of a pet of the sister, I think because I had a London accent as she did, the rest of the world around us were definitely Welsh.

One day Sister Nichols called me in to her office and said that she had something to show me. We went to another ward where there were about six men sitting in bed, propped up on pillows, straining to breathe.

had i not known what was coming and had to live

on benefits and a small pension i think my life

would be very different.



She held my hand while she chatted to them, they obviously knew her well. On the way back she told me that these men had all been on Baschurch Ward and had been more mobile than me.

She sat me down in her office and told me that there was a good chance that the whole body paralysis that I suffered at five could return. What she told me was that I should enjoy my life while I could, time was short and life was to be lived. She didn’t call it PPS or any other fancy name she just told me to enjoy life.

The Proffs. ward round came and the tribe of doctors gathered around my bed to discuss me as though I wasn’t there. The topic of Spinal Fusion came up and the surgeon turned to Sister “What do you think Sister” he asked. “I don’t think he is strong enough, in a few more years perhaps”

Her reply condemned me to a twisted body but probably saved my life. The following year Sister Nichols retired.

The point I am trying to make is that the Ward Sisters were specialists and were deferred to by the doctors, their clinical experience was second to none and the close relationship with the patient and the experience of the condition of the patient from a day to day perspective gave them a unique role in the clinical team. They had the experience and they knew by long observation that Polio could come back and bite you.

The destruction of the role of Ward Sister in the many reorganisations of the Health Service has taken away a whole level of clinical excellence that would take twenty years to recover.

I was one of the lucky ones, I knew what was coming, so I worked hard saved my money, married and had three kids. At 48 my respiration failed and I started to have all the fatigue problems associated with PPS but as I say, I was lucky. I had packed out my pension making extra contributions whenever I could so at age 50 I was able to retire and live quite well. Had I not known what was coming and had to live on benefits and a small pension I think my life would be very different.

Thank you Sister Nichols for having the courage to put a young man on the right path.

Steve Tomlin

A very happy 75th birthday to Robert Springham from Suffolk.

Robert contacted the bulletin to say he too has had a very busy year, visiting his grandchildren who have recently moved to Plymouth. Robert planned to celebrate his birthday on 3 October with a quiet dinner with his wife.

happy Birthday

robert

"I was delighted to receive a letter from Ted Hill just before my 75th birthday on 1 October. My celebrations, however, are on hold because of my ill health. I still hope to celebrate with my family in the not too distant future and meanwhile wonder how 75 years came so quickly!

The bulletin is a wonderful source of interest and information and it makes one feel included in a world where Polio and PPS are the norm. I can definitely say that being a member of the Exeter Polio Branch (South West region) is a supportive and wonderful group to belong to."

With Best Wishes Rita Stead, Exeter

Thank you for your kind words Rita – and from all at the bulletin, get well soon.

Dear bulletin...


the British Polio Fellowship50

i decided, that i shouldn’t be passive if i got insulted during the journey and would react accordingly.

After Polio (infantile paralysis) had been diagnosed I was moved to the Robert Jones & Agnes Hunt Orthopaedic Hospital at Gobowen (Oswestry) where I was treated until late 1939 when I was sent home to my parents since the Hospital became a Forces Hospital.

There seems to be little information available, even via Google, on Polio

outbreaks around that time.

I am trying to discover whether anyone else in the Glossop area and locality contracted Polio at the same time and if so, where they were treated and to what extent they were affected.

I would be grateful for any information regarding sufferers from that time.

I can be contacted either via the bulletin or alternatively at [email protected]

Thank you in anticipation, Brian Capper Glossop

calling all members Glossop Polio Outbreak ‘38

see page ?

I was born in Glossop in late autumn 1937 and lived with my parents in High Street West. In summer 1938 I contracted Polio when I was 9 months old which originally affected both my legs.

an absolute diamondOur mum

Iris will be celebrating her 90th birthday on Friday 14 November.

She still enjoys betting on horse races and has been a regular visitor to Royal Ascot and Newmarket race-courses over the years. Her determination, cheerful nature and unique sense of humour have made her popular with many people from Stewartby in Bedfordshire over the years. She is a well-known character, well loved and admired.

Iris has received the bulletin for many years. She still likes to write letters and poetry and receives visits from her grandchildren, great-grandchildren and one great-great grandchild. She is very sociable and enjoys nothing more than a good party where she does a little hand-jiving from her wheelchair.

She is an absolute diamond and would be thrilled to bits to see her name mentioned in the bulletin.

With kind regards, Julia Willett (Mrs)

Happy to oblige Julia. Very many happy returns for the 14th Iris and we hope you continue to enjoy the bulletin for many more years to come! Ed.

Mrs Iris Dudley contracted Polio whilst expecting my sister Linda 64 years ago. I have a brother Alan who is 66. Iris has been an excellent Mum to us all and was happily married for many years to our Dad George who passed away in 2000.

Waiting for George, the crescent – British Polio Fellowship member iris Dudley

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Lacerta Rehabilitation is based at the University of Salford. We have state of the art

clinical, assessment and manufacturing facilities. Both our clinical and technical staff

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For more information/appointments please contact:Mike Gilligan (Senior Orthotist/Manager)

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We hold regular multi-disciplinary team clinics and have many years’ experience of Polio and Post Polio Syndrome orthotic problems.

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When I was discharged, it was with a Zimmer frame as my mobility had significantly deteriorated. After a few weeks it became apparent that my reduced mobility was not just due to being restricted in bed.

Some research and discussion with professionals led us to believe that the Polio limbs had been affected by the anaesthetic. Some of the staff on the ward did not seem to know much about Polio, and a radiographer actually said she hadn’t heard about Polio!

My main purpose in writing is to suggest, either through the letter page or in whatever way you feel appropriate, that members are again made aware of the hospital pack available to any member facing a similar situation!

Thank you! I just wish I had remembered in time!

Sincerely, Barbara Hull.

P. S. It has taken some months and a lot of physio to regain walking by crutch.

happy Birthday

Some months ago I needed abdominal surgery, arranged very quickly. I had almost 3 weeks in hospital, longer than anticipated because of a couple of unexpected problems.

Dear bulletin...

I just wanted to thank The British Polio Fellowship for the letter marking my 75th birthday on the 27 October. I will be celebrating by going for a meal with a few family and friends.

Harry Smith Southampton

a BiGthank you

I expect that as usual I shall be at the club that I organise: the Basildon Disabled Sports Club, of which I have been a member for over 30 years and am currently the Chairperson (for my sins!). We run activities such as air rifle shooting, table tennis, pool etc. The air rifle shooting is the most popular with the members, one lad made it to London 2012 and another is aiming for the 2020 Olympic in Rio. They all keep me busy and young at heart.

I would like to take this opportunity to thank The British Polio Fellowship for the holiday grant that they awarded to my husband and I. My husband is very ill with Crohn’s disease, he has spent a lot of time in surgery and a holiday was much needed. Thanks to The British Polio Fellowship we have just had a lovely week in Cornwall – our first holiday in 4 years!

Kind Regards, E. Jeffery - Elizabeth (Betty) Jeffery

Thank you very much for you kind thoughts for my coming 75th Birthday. I am not sure yet what I shall be doing to celebrate the day, no doubt cakes will be involved!

to advertise inJuly/August 2014

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harry!


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53


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Lacerta Rehabilitation is based at the University of Salford. We have state of the art

clinical, assessment and manufacturing facilities. Both our clinical and technical staff

are very experienced in all areas of orthotics and specialist footwear.

For more information/appointments please contact:Mike Gilligan (Senior Orthotist/Manager)

Tel: 07771 696 804. Email [email protected]

We hold regular multi-disciplinary team clinics and have many years’ experience of Polio and Post Polio Syndrome orthotic problems.

Specialist in lower limb bracing including: •Intelligent free knee bracing •Lightweight carbon fibre bracing •Bespoke design bracing

Fitting of Intelligent Knee Brace

Assessment in Gait Laboratory

Fabrication of Leg Brace

Are you an orthotist? If

so, you could be advertising here. Contact

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Unique insurance. Partnerships that work.British Polio Fellowship, in partnership with Unique, offers insurance products and financial services for people living withmedical conditions, disabilities and allergies, their families andfriends, and for supporters of British Polio Fellowship.

Speak to our friendly and experienced team for information and noobligation quotations for travel, home and motor insurance and wecan also offer you Life assurance - hopefully helping you purchasesome peace of mind for now and the future...

Call the Unique team today on 01603 828 223 (quoting Bulletin). Alternatively, you can visit www.britishpolio.org.uk - whereyou'll get a 5% discount if you purchase your travel insurance online!

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THE CORDWAINERDoes your footwear reflect your lifestyle?

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I am Philip Taylor

• I live with the effects of Polio.• 30 years in the trade.• Member of The British Polio Fellowship’s Specialist Orthotics Panel.• I specialise in taking on the most difficult footwear for disabled people.• Limited home visiting service.

My promise:

• £50 donated to The British Polio Fellowship for each new footwear order. (£25 for returning customers)*• To support you if you want to have the footwear I make supplied through the National Health Service. * Applies to all orders 1 month from magazine print date.

Tel: 01433 621623 Email: [email protected]

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new

s fr

om c

entr

al o

ffice

Indoor Dance Championships, 9 October, The Royal Albert Hall

To recognise that this is a really special year for The Fellowship, we have incredibly been able to secure the Royal Box, to thank our Ambassadors and Patrons for their support.

PPS Day, 28 October

We will launch this special day with a Parliamentary Reception at Portcullis House, where we are hoping to raise awareness with as many MPs as possible about the late effects of Polio and PPS. Look out for more on this in the summer.

Park Row Five Jazz band CD in aid of The British Polio Fellowship

The Park Row Five, featured in the pages of this bulletin for their excellent pre-Christmas concert in the South West (pictured above),

are keen to produce a fundraising CD for us. We are containing our natural excitement on this one while we work through the ‘devil in the detail’, such as music copyright issues etc. This opportunity has come about through Professor Gareth Williams, who as well as being an Ambassador for us, an author, doctor and academic, had a mis-spent youth, which led him to take up the flute and sax. We are aiming to get the CD out by the autumn so we can capitalise on the Christmas retail rush. The band plays a wide range of jazz, from Gershwin and Ellington to Latin, so there should be something in there for you all.

We’ll try to upload some preview clips to our website in advance of the main CD launch later in the year, to give you a chance to decide whether you want to part with your cash, either to treat yourself or as a Christmas present.

More events planned

Further events and activities will be announced in due course. What are you doing in the Regions to commemorate our 75th Anniversary?

Let us know and we may report your events within the bulletin and possibly even further afield. n

+

At James Taylor & Son we have been making beautiful bespoke footwear for over 150 years.We specialise in problem feet and we have a worldwide reputation for making high quality, perfectly fitting shoes and boots to suit a wide range of foot conditions. We offer a wide range of classic and modern designs, as well as unique styles made to your own specification.

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salk institute Guided Architecture Tour

Some people describe it as a “must see” attraction when visiting the San Diego area, but we have been there a few times before without ever seeing it.

My recent interest in learning everything I have always ignored about Polio and Post Polio Syndrome was perhaps the main reason why we planned the visit to the research centre, established by Jonas Salk, the developer of the Polio vaccine. Currently, the institute focuses its research in three areas: molecular biology and genetics, neurosciences, and plant biology; covering a range of topics such as cancer, diabetes and Parkinson’s disease amongst others.

Before I go any further, I must confess that I am architecturally

illiterate. When I see a building I can only classify it as good looking or definitely ungracious. To understand the transcendence of a site, I need to hear the point of view of the experts with plain explanations of the purposefully-designed spaces of a building, and what makes them special or unique.

When we first arrived at the building, I saw it from the distance, and my honest first perception was that it was rather dull. The weather was partly to blame, because it was cloudy, cold and very windy, contrary to what it had been before, when visiting the affluent neighbourhood of La Jolla, in San Diego. It’s fair to say that I was looking at the back of the building, and from where I was I could not

see the ocean, yet.

After a short introduction given by a scientist who explained the type of research done by the institute, describing the profile of the researchers, which had even had some Nobel laureates; our tour guide led us to the point where the tour was to start.

During the introduction she explained some fascinating facts about the history and architectural significance of the Institute. We also heard that the March of Dimes had provided the initial funding and that the land was donated by the citizens of San Diego as a result of the personal interest of Charles Dail, the mayor of the city, who was a Polio survivor himself.

I didn’t know exactly what to expect from an “architectural tour”, when my husband Phil and I booked our tickets for the Salk Institute free guided architecture tour.



55

The other main materials chosen by Kahn were teak, lead glass and A242 steel. The two buildings are flanked by a courtyard and to the west end of each of them are offices with balconies overlooking the ocean.

I was not prepared for the spectacular view that I was presented with when our guide instructed us to look behind us, as if we had entered from the ocean. It was a really stunning and completely different building seen from that angle.

And as I was recovering from that surprise, we were bombarded with many other fascinating facts about the features of the building. Our guide explained with the patience that many academics display when talking to people who have no previous knowledge of the subject, that “Kahn’s design of interstitial spaces between each lab floor resulted in confining all the electric lines, piping systems and ventilation ducts to this area. This architectural design allows researchers to

re-configure their laboratories as scientific needs change.” That was an amazing achievement indeed.

I found it hard to follow her explanations, because I needed extra time to digest what she was disclosing. I was in absolute awe at the sight of the building and trying to stop my mind from wandering as I automatically started to imagine what it would be like to be there at sunrise or sunset, when we heard about how the architectural feature of the institute allows it to use natural daylight.

By the end of the tour I could easily understand why the Salk Institute has been acclaimed an architectural icon, “One of the world’s boldest structures”. It was a truly fascinating experience, to get to know the site resulted of the collaboration between Salk and Kahn, to create a place that “meets the researcher’s functional, humanistic and aesthetic needs”.

Diana E. Marshall

After that, Phil and I had to go around the building, as it was the only wheelchair accessible way to the focal point of the tour, which has a regular route via a flight of stairs.

When we joined the group again, our guide said that “Salk commissioned the renowned architect, Louis I. Kahn, to design the facility. His design request called for a structure that was adaptable to the ever-changing needs of science, and that will last for many generations with minimal maintenance. The site was completed in 1965.”

The two-mirror image, rectangular buildings, were made of concrete with no grinding, filling or painting.

By the end of the tour i could easily understand why the salk institute has been acclaimed an architectural icon.

56

BrAnch AnD reGionAl neWs


celebrating75 years of fellowship

So at a gathering of Yorkshire members on Sunday 28 September at Featherstone Library we played rugby and cricket, as you can imagine after all these years playing sport we have learnt how to adapt games!!!

Yorkshire Region

In 1939 Yorkshire County Cricket team won the County Championship, this was also the year that Featherstone Rovers Rugby team won the Yorkshire Cup. 75 years of sport meets 75 years of Fellowship.

Cricket was played on a table with a match box for wickets, a child’s knitting needle for a bat and a ping pong ball.

We played rugby with a match box, dice and a clever ‘pitch’ built by Gordon Lumb.

Laughter rang out for most of the afternoon, only stopping when tea was served.

There were winners and the lady and gent with the most points in each game were presented with a cup bearing the motto, ‘Every Day is Yorkshire Day’.

It was a great afternoon and what better way to celebrate 75 years than in good company with good food and lots of laughs.

Jan Taylor

Notts and Derby BranchFifty members got together on 25 September from areas in our region: Notts and Derby, Peterborough, Leicester, Kings Lynn and Northampton.

It was lovely to see old and new faces. We had a lovely meal at the Barnsdale Hall Hotel, near Oakham, Rutland and were well looked after by the staff there. We couldn’t have asked for a more sunny day and our view overlooking Rutland Water was enhanced by the weather.

Thanks go to Marion for organising this successful event.

Barbara Worrall Chair, Notts and Derby Branch

East Midlands Region



Wolverhampton & Dudley Branch

2014 has marked not only the 75th Anniversary of The British Polio Fellowship but also the 65th Anniversary of the Wolverhampton & Dudley Branch.

Anniversary celebrations

These milestones have been marked at branch social events during 2014 such as a Karaoke Night covering music from past decades, and an evening of choral entertainment from local choir, The Haven Singers.

socialsIn 2014 we have had indoor curling, fish & chip night, beetle drive, bingo and a harvest evening. The Branch Annual Dinner will take place on 1 December 2014.

As always, we thank Woodfield Social and Sports Club, Penn, for the use of its modern environment for our social evenings.

outingsThere has been a good response to outings arranged by Social Secretary, Norma Tilley.

May - members enjoyed a meal at The Buzz, Stratford-Upon-Avon, followed by a river cruise.

June - following a meal at one of the oldest pubs in Hereford, The Spread Eagle, members explored Hereford Cathedral.

August - lunch was taken at Trentham Gardens Shopping Village before a guided tour of The Gladstone Pottery Museum at Stoke-on-Trent.

September - members enjoyed an afternoon of horseracing at Wolverhampton Racecourse.

Norma has planned a visit to Telford and a Christmas Choral Concert before the end of 2014.

Branch AGm 7 April 2014Previous Branch Committee members were willing to re-stand and re-elected for 2014/15. Branch Rules allow for up to 12 committee members. If feel you are able to give your time to help the running of the Branch and are interested in joining the organising committee, please forward details to the Branch Secretary.

The position of Branch President has continued to remain vacant. If you wish to nominate anyone please get their permission first.

WelFAre: The Branch Welfare Officer (Mary Barker) is willing to help with problems Polio members may have, and attempt to advise, or direct towards relevant bodies for advice. Contact her on 01384 295007, or speak to any member of the Branch Committee. Everything will be treated in the strictest confidence.

FlAG DAys: The Branch has not been given the opportunity to collect at many supermarkets etc, during 2014 and it would appear this method of fundraising is getting scarce. Your committee has decided to consider other sources of fundraising in the coming year.

trAnsPort: Transport is mainly booked with Black Country Community Transport. If you have any information on transport providers who have facilities to carry disabled passengers please contact Social Secretary Norma Tilley, tel: 01902 651 451. If you use transport to attend monthly socials, please give Norma notice if you need to alter arrangements.

Western Region

scottish newsletterFor the first time we have had our Scottish Newsletter professionally designed and printed. We have done this in part to use and distribute at events (as well as the leaflet) but also when looking at the time it took and cost of ink for ourselves to produce, there was very little difference in the total cost, and we think it looks pretty good too! We will aim to have a regular schedule for the Scottish Newsletter in 2015, with the hope that many of you will want to contribute: this could be anything from a poem to an issue based piece.



We are delighted to share with all members an update on development work taking place in Scotland.

58

Scottish Region

news in Brief

The day itself was fantastic, starting with the South Lanarkshire Access Panel video featuring a certain Mr Leyden, followed by a motivational speech from Chris Moon who while supervising mine-clearance in Mozambique in 1995, stepped on a mine in a supposedly clear area of the safety lane. He lost his lower right leg and right arm and survived only through sheer determination. His talk was inspirational.

There were 25 other stalls in the hall ranging from Guide Dogs for the Blind to the Terence Higgins Trust.

Many of our vistors couldn’t understand why there was still

a Polio organisation. Common phrases used were ‘but we’ve got the vaccination now’ to ‘but Polio stopped in the 1960s didn’t it?’ For those who said ‘I remember some kids in my class having Polio’ our simple but effective reply was ‘Yes, those kids grew up and are still effected from having Polio’.

The impact of this simple statement was quite dramatic, starting with a little confusion, to eyes opening (like a light bulb going on) followed by them saying ‘of course, gosh, of course’. Perhaps a future British Polio Fellowship campaign should start with ‘…remember those kids....’

Tara Anderson, Development Officer – Scotland

south lanarkshire Access Panel - open Day drop-inArchie and I attended this event, armed with a boxful of leaflets, pens, bags and other assorted information for our stall.

scottish membership survey480 membership surveys have been mailed out to all members in Scotland. This survey is more detailed than the UK survey. We are aiming to really get to know the needs, wants and aspirations of our members in Scotland so that we can design a specific development programme based on the responses. Detailed questions include demographics, current use of services, interest in development opportunities and themed sub- groups. Our hope is that we will have a good response and to have an executive summary of outcomes for the next edition of the bulletin.

scottish leafletOver 7,000 Scottish specific leaflets have now gone out, this cascade has included 5 copies to each Scottish member and thousands have gone to Development Officers from Age Scotland, who are located across the country: from Forres to Dumfries and Fort William to Fife. We hope that whilst they attend groups and open days our leaflet will be dispersed up and down the country.



Paisley Branch reportThe Paisley Branch is planning a trip to see Cinderella at the Clyde Auditorium in December and I’m hoping to get a good turn-out from members.

If the weather is kind to us, we may also have a lunch to celebrate the festive season, but we are still looking for a suitable venue. The branch has been having a bit of a landmark time since the last meeting, with two 60th birthdays, a 70th and an 80th birthday amongst our members. All birthdays were marked with handmade cards.

Georgina Hay Branch Chairman

Aberdeen Branch newsOn 24 August eight of us had a great day out in Aviemore, starting with a trip on the Strathspey steam train and then lunch at the Druie Cafe at the Rothiemurchus Centre.

The weather was very kind to us, sun shine all day, the mountains were beautiful, the heather looked bonny, and the company was great! Everyone had such a good time it was agreed we should meet there again sometime.

Chris Linn

The weather has been kind to us on our other excursions and today was no exception we arrived to blue skies and bright sunshine.

We went straight to the wild animal enclosures and saw up close lions, tigers, bears, rhinos, elephants just to name a few. It was whilst going through the lions’ and tigers’ enclosure that the group leader was reminded about the last time the group were there, when he was given tips on solving the problem he had with cats digging up his garden and although he was handed a heavy duty bag and shovel he refused to get off the bus.

The two shows we saw were wonderful, first we were treated to

an awesome Birds of Prey Show and then we took in the Sea Lions Show. There is lots to see and do at the park including: pets farm, bouncy castle, pirate ship, wooden castle, face painting, flying fox and much much more. The time to depart was all too soon upon us and we boarded the bus and headed to Callander.

On arriving in Callander we had enough time to have a wee look around before once again boarding the bus and heading for The Rob Roy Hotel in Aberfoyle were we had a wonderful meal of either Haddock, Steak Pie or Salad. Tea and coffee was then served to compliment the selection of cakes on offer.

All too soon we were again boarding the bus and heading in a homeward direction, you would have thought people would have settled back in their seats enjoying the scenery, but no, there was laughter all the way home.

Everyone had a great day.

lanarkshire Group outingOn Sunday 17 August once the bus had picked up the gang we set off for a day at The Safari and Adventure Park in Stirling.

59

Scottish Region



Scottish Region

The contest wasn’t starting until 1pm but by 12.15 the centre was buzzing with helpers preparing the centre for the arrival of the competitors. A huge debt of gratitude is owed to everyone who helped make the day the success it was, we owe special thanks to Alan Thompson, son of Stewart and Mary for coming along and preparing the two kurling alleys for us.

By 1pm everyone had arrived it was truly amazing, three people had travelled from Dundee, eight had travelled from Edinburgh and the other twelve were locals. Before the start everyone enjoyed some refreshments.

Set one, Set two and Quarter Final was best of three ends, Semi-Final was three ends round robin with two highest scorers going into the Final which was best of five ends.

It all kicked off in the first set with Colin Davies v Christine Black. Helena Barker v Elaine Brown.

Lyla Scott v Roy Barker. Jackie MacKenzie v Peter Kelly. Margaret Humes v Mary Thompson. Bill Fenwick v Archie Leyden. Stewart Thompson v Robert O Hanlon. Pat Leyden v June Greig. Elspeth Harrison v Helena Janacki. Frances Craig v Leonard Barker. Ralph Black v Jeff Draper.

The second set saw Colin v Elaine. Roy v Jackie. Mary v Bill. Stewart v Pat. Elspeth v Leonard and Ralph had a bye.

In the quarter finals Colin played Jackie. Mary played Pat and Leonard played Ralph which resulted in Jackie, Mary and Ralph winning through to the semi-final.

We saw very high scoring in the round robin Semi-Final and after all

ends had been played Jackie had scored 23 points, Mary had scored 35 points and Ralph had scored 45 points. Sadly Jackie had the lowest score which meant it was a Mary v Ralph final.

At 3pm we stopped for tea, the Lanarkshire ladies had prepared a veritable feast. We were treated to Christie’s pies and sausage rolls with the intrinsic mushy peas, two types of pizza and a selection of sandwiches. There is nothing quite as satisfying as home made baking and we were treated to a wonderful selection of tasty treats.

After tea the final took place between Mary Thompson and Ralph Black, it was played at a very high level it was nip and tuck with points being equally shared mostly. However, Ralph took the top prize winning three ends to Mary’s one.

At the end of the day The British Polio Fellowship was the out and out winner.

Lanarkshire Group Fellowship Day

new Age Kurling contestOn Saturday 30 August Airdrie awoke to sunshine, the group’s plans were coming together nicely as they did for the rest of the day which created a wonderful day’s Kurling at The Springfield Community Centre, Airdrie.

At the end of the day the British Polio Fellowship was

the out and out winner.



We have had a busy year in the Merseyside Branch. Apart from our monthly meetings, which are always lively, we organise various days out. We all met up in Southport for a ‘seaside’ carvery lunch early in the Summer. The weather was glorious and members could enjoy the promenade and the many accessible places.

We had our very popular barge trips on the Leeds Liverpool Canal. We held a fundraising Summer Fair, where we had 9 different stalls, all competing to raise as much funds for our Branch as possible and to raise awareness of The British Polio Fellowship. We offered afternoon teas which went down very well. The day was a huge success and well worth all the hard work.

We had a shopping trip with a Fish and Chip lunch!

We also hosted our Regional 75th Anniversary celebration and we look forward to hosting our Regional games on 18 October.

Our year will culminate in a Christmas meal/Party night at the Holiday Inn in Liverpool on 13 December. Any members interested in coming along please contact Robby Winn for details as soon as possible on 07919 420425.

Hilary Davies Secretary

merseyside Branch

North West Region

Michael Griffiths, MBE has been involved with the North West branch of The British Polio Fellowship for over 12 years and Chair for the past 5 years.

During his time he has highlighted not just the charity, but the needs of members living with Polio and Post Polio Syndrome (PPS) so when BBC Radio Merseyside wanted a local man to interview in connection with Polio and PPS, Mike stepped up to the challenge.

mike Griffithstakes to the mike



East Midland Region

Peter stated that the Northamptonshire Branch were appreciative of the financial support and encouragement they had received from Mike Egan and the Leicestershire Branch members when setting up the branch in Northamptonshire. The meeting discussed the impact of cold intolerance that was suffered by many members and the actions they had taken to address the problem.

The British Polio Fellowship Winter Warmth Campaign by Bryan Rowley was discussed. As a result of the publicity generated by The British Polio Fellowship PR company member Mike Jackson from the group was invited for an interview with Radio Northampton. On air he covered the British Polio Fellowship campaign; cold intolerance and promoted the local branch. At the October meeting he would be giving members a feedback from the PPS Rehabilitation course that he had attended at St Thomas' Hospital in London in September.

The meeting was advised that plans were now in place for the Christmas party at the Corn Market Hall, Kettering 9 Jan 7-10pm. The members, family and friends were invited to support the branch by joining this social event. It was reported at the last meeting that Carl Weininger who has a totally disabled arm and Polio in his

legs, for which he wears a caliper on his left leg, was taking part in activities for the disabled organised by SPORTABILITY. Carl reported that during September he had taken part with assistance in the following: Sailing at Northampton Pitsford Reservoir; Canoeing at Ross on Wye; Quad Biking; Clay pigeon shooting and crossbow at Adventure sports near Warwick; Microlight flying at Sywell airport, Northampton; and Gliding at Shennington near Banbury.

Carl told members of his experience. He said it was a lovely day for a flight, with lots of willing volunteer helpers. The glider was well suited for use with two arms, as it had a hand rudder addition, so no leg input is necessary for paraplegic pilots. However, he enjoyed the flight and George, one of the volunteer instructors, managed to find a “thermal” quite near the

airfield, and managed to stay up for quite some time.

George let Carl take control a couple of times, who flew with his one good hand on the stick, and one good foot going from one rudder pedal to the other (not recommended in a glider). The instructor, George, had taken off with the winch pulling them to 1000 feet, and he landed the glider, as you require full rudder and stick control for both of these manoeuvres, as well as using the hand operated air brake for landing. Bit much for one hand, next time I will try some adaptations (Velcro, sticky tape and an expander, or two!!)

Peter Mains can be contacted on Tel: 01604 756936 Email: [email protected]

On the 16 September Peter Mains Branch Chairman welcomed members to the meeting of the Branch. He advised the members that Bryan Rowley, Chairman of the British Polio Fellowship Trustees and Mike Egan, Chairman of the Leicestershire Branch would be attending the next meeting at Kislingbury Village Hall on Tuesday 14 October.

northamptonshire branch

Carl Weininger in the glider at Shennington near Banbury



North of England Region

sunderland Branch

On Friday 15 August 2014, 40 branch members celebrated the 75th Anniversary by coming together at The Rosedene Hotel, Sunderland. The Rosedene provided a beautiful buffet. Certificates were presented to volunteers recognising their valuable services.

Nigel Lee organised a quiz which always encourages members to chat to each other; sharing or stealing answers to the quiz. This is always a good ice breaker. A raffle raised £84 which will be put to good use.

Two members; Audrey Henderson and Doreen Hammond celebrated their 70th birthdays in August 2014. They blew out the candles on The British Polio Fellowship’s 75th Anniversary cake (photo 1).

These social events always encourage members we have not seen in a long time. It was good to welcome Mrs Eleanor Moore

who for many years was a valuable active Voluntary Committee member whose son John Moore suffered Polio as a child. John travelled from Liverpool where he now lives. John has been a member of the Branch since 1956.

Sunderland Branch meet on the 1st Tuesday of every month at the Pennywell Community Centre, Sunderland.

One of our main activities or treats for members is the much needed Holistic Therapy Massage. Health Scented Therapists Linda Surtees and Manager Judith Potelle are our

Therapy Angels. Each member who participates has treatments which are ‘tailor made’ for their individual health needs (photo 2).

At our PPS Support Meeting in June we planted The British Polio Fellowship’s seeds of hope into plant containers. Members also planted the seeds at home. Everyone reported back informing the group that they had a beautiful, colourful selection of flowers (photos 3 and 4).

Sunderland Branch is celebrating our 60th Anniversary this year. We have plans to do something special to mark this celebration, something to retain the history of the Sunderland Branch… WATCH THIS SPACE!

Thank you Mrs Shirley Williams, Chairperson

Sunderland Branch members have been very busy highlighting the 75th Anniversary in the local media, the Sunderland Echo. Sowing our seeds of hope and wearing with pride our PPS badges.

one of our main activities or treats for members is

the much needed holistic therapy massage.

1 2 3

4



There was a lot going on and many restaurants from which to choose. We celebrated our member Harry's birthday (87 years old) and the restaurant gave him a birthday surprise too.

After an hour wandering around the Dome exploring all the new buildings and sights, we headed for the Thames Cable car which is just a short throw from the restaurant.

It was a thrilling 20 minute ride, much better than the London Eye as you see far more and have that basic thrill of wondering if those cables will hold up! I recommend it to anyone.

After the ride, we strolled around the outside of the 02 alongside the Thames - London is a forever changing place and thrilling to see all the new developments.

We all had a really enjoyable day with good friends, not least exciting was that when we returned to our first drop off where we had parked cars in Dobbies car park, we found that they had closed the gate on us (closed early on a Sunday). As we waved off our departing friends in the coach on their way to Dover, we found a spot where we could just squeeze through with cars and a large adapted van. Relief all round.

The bus we hired also catered, somewhat unexpectedly for our driver it appeared, for not only wheelchairs but also carried a mobility scooter. I am still seeking

a bus that will take a number of wheelchairs AND scooters. Surely, they can't be too long in coming?

Do please join us on our Facebook page: South East Kent Polio Group (established before we were a Branch) for news and information on Branch events and outings. The Branch has also formed a Facebook page: Post Polio Syndrome - please join us and join the discussion where you can exchange views and experiences with a wide range of people from all over the world. We recently had a chat with a young lady in Mexico - helped by Google translate.

South of England Region

south east Kent Branch

It was a perfect Autumn day, bright and sunny when we got off our coach and headed for lunch at Chiquitos at the O2 arena on the Greenwich Peninsula.

You can see more photos on our website: http://sekpoliogroup.com/ and our Twitter account: SE Kent Polio Branch. Please email [email protected] to contact our Branch.


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mid Kent Branch

Officers are as follows:- Bob Stephens (Worthing) is Chairman; Mary Gillies (Worthing) is Secretary and Madeleine Henry (Southampton) is Treasurer. Each Branch sends along representatives to share ideas and thoughts at two meetings per

year. Discussion on joint events, the Regional Lunch and Regional Games, takes place and we are especially keen to hear about each other’s trips and outings, as this gives us venue ideas for our own branches.

Anyone interested in learning more about the region or in making contact with any of the branches can contact Sue Brown on 01635 253222 or at [email protected] and she will put you in touch.

A few of us went sailing at Westbere Lake near Sturry with the Sailing for Disabled charity. It was tremendous fun and exhilarating at the same time, when the sails filled with wind and we were off. This was a trial run for us and the organisers, but we will probably go for it next year.


We had a trip to Hastings for fish and chips. Rosemary and Sue managed to join us for the first time and it was good to see them. We almost filled the restaurant and the service was excellent as was the meal and afterwards we set off along the front and ended up playing crazy golf. For me this was a first, I have seen these golf courses since I was a child, but never actually played and I was absolute rubbish at it, but enjoyed every minute.

The most important event for us was

Daniel Brasier doing an Ironman triathlon held in Weymouth for The British Polio Fellowship. For this he had trained intensely for most of the year and he did very well finishing over 2 hours under his best time. Dan did this for his hero, who happens to be his Dad. He thinks of Barry in that way, because Barry will not be beaten by anything he sets his mind to do. As an example, a number of years ago Barry dug out the footings for his bungalow and this was done on his knees; he has

also made most of the furniture and cupboards, he is a wizard with his carpentry skills.

I think Dan must have inherited some of his Dad’s grit and determination and because of this he raised £1260 for The British Polio Fellowship funds, so Dan is now our hero. I would like to pass on our thanks to him for this tremendous achievement.

Rob Butler [email protected]

The South of England Region consists of 8 Branches and Groups - Berkshire, Dorset, Mid Kent, North West Kent, South East Kent, Southampton, Sutton and Worthing and Sussex.

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The new Mary Rose Museum in Portsmouth, much improved on the original but still not a perfect view, South of England Show, lovely day thank goodness and lastly Buckingham Palace - fascinating but so, so busy with all the other tourists!

We have also completed seven Flag Days raising £2100 - not our best, but better than last year, and we visited some interesting Sussex Towns.

We were delighted that four of our members won prizes in this year’s Richard Flint Competition, a first, a second and 2 thirds. Diana Marshall won first prize in Poetry and I hope hers will be published in the bulletin and we will certainly include it in our bi-monthly Branch Newsletter, which can also be viewed on our website, www.worthingbpf.co.uk

Our Winter get-togethers start this month with a talk and demo by a duo called ‘Time Span’. The theme this time is appropriately ‘The Great War’ 1914/1918. We usually average about 50 members at get togethers and anyone is welcome, details on our website, but do let us know for the catering.

In other news, we’ve recently sent out the draw books for our annual raffle and we hope all members

at the charity will take part in what is a fantastic fundraiser with some fantastic prizes this year.

Lastly, on behalf of all at the branch I’d like to wish Lily Salmon a Happy Birthday for when she reaches 100 years old. What an achievement!

Bob Stephens


Worthing & sussex Branch

We have now completed our Summer Season of outings, three River Cruises in the Solent, lovely on the top deck but too hot for those in wheelchairs inside the boat. However, lovely cream tea!


We were delighted that four of our members won prizes in this year’s richard Flint

competition, a first, a second and 2 thirds.



Worthing & Sussex Branch

We were delighted to welcome Pam Jones, The British Polio Fellowship’s outgoing Chair of Trustees as the guest of honour at the event and all of the South of England members enjoyed her speech about the charity’s brilliant achievements in its 75th Anniversary year.

Pam, who lives in Birmingham, felt she couldn’t come all the way south without seeing the sea though, so she travelled along to Worthing. Unfortunately for her there was a very thick sea mist making for poor visibility!

The highlight of the day, we celebrated the very day of their ruby wedding anniversary with Mogs and Peter

Killner. Lots of flowers, cakes, and happiness and a very “average” rendering of the Anniversary Waltz by the whole company!

September saw us host the South of England Region’s Annual Lunch at the White Swan in Arundel. 101 members squeezed into the main room of the pub and the food was excellent and actually a little too much – the portions were huge.


Berkshire Branch

A flag day outside Sainsbury’s in Tadley raised £463. There were interesting responses from the shoppers, a number of whom were genuinely interested in hearing about The British Polio Fellowship, but surprised to hear that Polio was still an issue. We wasted no time in enlightening them!

Someone must have been looking down on us favourably for our October outing to Milletts Farm as we experienced a beautifully sunny day in between two very

wet, miserable ones! The site near Abingdon provides great outdoor seating, a children’s play area, a lake, a wonderful farm shop and a super garden centre. We met together for a delightful lunch in the Lakeside Restaurant, then headed off to start our Christmas shopping! With carriages booked for 4pm, there was no time to waste!

Our November meeting is on Saturday 8th and will be held at the Maples Resource Centre in Reading, when our pampering afternoon will

provide masseurs, a hairdresser and a manicurist, followed by a cream tea.

Our Christmas meal will be on Saturday, 13 December at The Winning Hand, Beenham, near Reading. Please get in touch if you are interested in any of our events.

Sue Brown

In September we joined friends from across the region for our annual lunch, this year enjoying the delights of the White Swan in Arundel. Twenty members made the journey and appreciated the good food and company.

Annual lunch



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november social Sunday 9th, 2014

To mark the 75th Anniversary of The British Polio Fellowship, along with WWI and WW2, I would like to make our own history board of the Dorset Group/Branch. For this I need your help. Can you please post or email me any photos you may have of our Branch/Group outings, holidays and events along with any pictures/photos you may have of any previous events that you may have been involved in, with the BPF or Infantile Paralysis Fellowship as it then was.

Here is a photo I found of an outing that the Hayes/Hillingdon Branch made to Windsor Castle circa 1954/5. Do any of you recognise anyone in the picture?

Our refreshments for this social will be a mix of the kind of things we would have been eating during 1914-1918, 1938-1944 and, of course, the usual afternoon tea that we provide. Can you please contact any one of the Committee Members, no later than Monday 3 November, IF YOU WILL BE ATTENDING, so that we know how many to cater for.

Just to make it a bit more interesting/

fun; dressing in the style of these times, even if it is a fancy hat or an old uniform - whatever you fancy, would be a good excuse to have a prize for the best/worst/most outlandish outfit. There will also be music that was popular at those times, so be prepared for a singalong. With a bit of persuasion, we might be able to get Derek, our Chairman, to take the lead and serenade us with his dulcet tones.

Regards to you all and hope to see you all at the November Social.

Jose x


Dorset Branch

Traditionally, this is the day when we take time to remember those who fought, and died, for our freedom. This year is especially important as it is 100 years since the beginning of WWI and 70 years since the end of WW2.

there will also be music that was popular at those times, so be prepared for a singalong.



A warm, sunny day and a picnic lunch with Mid Kent Group in the lovely Mote Park was very enjoyable. They even had an iced cake to celebrate the Fellowship's 75th Anniversary.

Finally, an outing to Margate at the end of July was on a warm but windy day. Most members went by coach, but with more members needing to use scooters and electric chairs there was not room for all so we went by car. There was time for lunch before going to the Winter Gardens for an afternoon’s entertainment.

We are planning a day at the Queen Elizabeth Park, when a Paralympics Day is being held.

All monthly socials are held at the Pop-in-Parlour, Northumberland Heath from 2-5pm unless otherwise stated. Dates are as follows:

Saturday November 29th (This is instead of December) Sunday December 7th Christmas Carvery at Birchwood Golf Club 1pm.

Marion Webb

north West Kent BranchWe have had several outings, the first being to Bluewater for the Motability One Big Day. Afterwards, we did a bit of shopping and while in Marks and Spencer's we were very surprised and pleased to have a chat with Jean and Alan Mayston who have moved to Wiltshire.


Dorset Branch

What a wonderful contribution their family have made for our benefit, taking into consideration the ongoing funds raised by the plant sales and open garden events that Rhona and David have held.

Raising awareness, as well as fund raising, is so important so I hope you will make the most of the inserts in the bulletin by asking your local

newsagent, shop or library; even the hairdresser, to place the “SUPPORT PPS DAY” notice in their window. Central Office wil be happy to send more if you want them.

As a reminder, we still have another collection permit for two days, at Sainsbury’s in Ferndown, on Thursday 4th & Friday 5th December 2014. (Not on 28th & 29th November

as previously stated.) So far, I have four people prepared to give their time to help with these collections.

Please, if you can give a couple of hours to help, contact me on 01202 579360 or email me at: [email protected]

Firstly, I would like to offer congratulations and a huge thank you to Rhona’s daughter Alice and her boyfriend Steve, for raising over £500, by taking part in the Bournemouth Marathon on Saturday 4 October 2014.




north london Branch

In September, some 28 members enjoyed a relaxing three hour river cruise which took in the scenic delights of The Lee Valley Country Park near Broxbourne in Hertfordshire. Members boarded the fully wheelchair accessible Lady of Lee Valley riverboat on a gloriously sunny day in what has been one of the warmest Septembers on record.

On board they enjoyed a delicious Sunday Lunch in the midst of some stunning Lee Valley riverside houses and gardens as well as the excitement of going through two locks. All through the trip the branch were travelling along the prettiest stretches of the River Lee and there was even a spot of singing when the crew played some lively music.

October also saw the branch take a trip down memory lane when long standing member Denise Chennel gave a talk on her memories as “A Blitz Baby”. Denise told stories of sleeping alone in her air raid shelter, collecting worms to feed the family chickens and of the day her stern headmaster declared that he “would give them all a banana when the

war was over!” Denise also showed memorabilia from the period, including photographs, medals, a ration book and her identity card.

The branch are now looking forward to Christmas and they have announced 20 December at the Jim McDonald Centre in Hatfield as their Christmas Party where they will enjoy a Christmas dinner, mince

pies as well as the usual fun, games and music all for £10.

Special mentions also go to Win, our oldest member, who looked much healthier at the October Social following spending much of the summer in Chase Farm Hospital with a broken leg. Whilst congratulations are in order for Heather who no longer needs to wear her glasses following a successful operation on her cataracts.

September and October have been interesting months for the North London Branch as they looked to make the most of the remaining summer, but begin planning an exciting Christmas as winter draws near.

there was even a spot of singing when the crew played

some lively music.


holiDAy ProGrAmme

The Ron Scudamore Holiday Programme

The programme originated from a legacy made by our former Chairman Ron Scudamore. Ron served as our Chairman in the 70s.

At one time Ron used to run the Western Region holidays and he always believed that it was important that members could enjoy affordable and accessible holidays. He wanted his legacy to be used solely for this purpose and so the Holiday Programme was born.

Since the programme began we have helped pledge over £146,000 to help people enjoy a much needed holiday or break.

Grant applications

Applications received review Panel meets

Between 1 Nov and 31 December January 2015

Between 1 January and 28 February 2015 March 2015

Between 1 March and 30 April 2015 May 2015

Between 1 May and 30 June 2015 July 2015

Burnham bungalowDon’t forget that members looking for an affordable holiday in comfortable, well adapted accommodation overlooking the sea can enjoy a week at the Fellowship’s holiday bungalow in Burnham-on-Sea. There are spectacular views of the bay from the living room and two of the bedrooms. The bungalow offers well-adapted and modern accommodation and has the facilities to guarantee a good holiday at any time of year. The table shows the new weekly rates for the holiday bungalow. All bookings begin on a Saturday. A deposit of £100 is required at the time of booking to secure the bungalow. To make a booking please contact Rosalind Evans on 0208 836 3686 or email [email protected]

Dates for 2014 Price per week

1 Nov – 12 Dec £329

13 Dec – 28 Dec £436

Dates for 2015

3 Jan – 27 Feb £337

28 Feb – 27 Mar £395

28 Mar – 24 Apr £458

25 Apr – 22 May £526

23 May – 3 July £574

4 July – 25 Sep £600

26 Sep – 30 Oct £474

31 Oct – 11 Dec £337

Book early to avoid disappointment!

How it worksThe maximum grant that you can apply for is £350 towards the cost of your holiday or break. You can holiday in this country or abroad and it can be used towards the hotel or flight. To request an application form or for further information please contact Rosalind Evans on 0208 836 3686 or email: [email protected]

Once we have received your application, it is considered at the next Grant Review Panel which meet every two months. Please remember to send your application in well in advance (see panel below as to when to submit your application for consideration). After the Grant Review Panel has met you will be notified in writing.

Please note that your holiday departure date needs to be at least six weeks after the relevant panel meeting. Grant pledges are not paid retrospectively.

You can apply for a grant once every two years.

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Such thoughts are right on target for, although Bryan has been active in The British Polio Fellowship for many years, his parents connection with The British Polio Fellowship goes back to the very earliest days with Tom Rowley, Bryan’s father, being national Vice-Chairman and then national Chairman for a number of years.

The Rowley story all starts when Bryan contracted Polio in 1935 at the age of fifteen months; initially there were difficulties in Bryan’s diagnosis but, after some three years, Polio was confirmed and it was decided by the consultant in Newcastle that Bryan would be a full-time wheelchair-user - a prognosis that Tom never accepted. Thus, Tom

and Eva decided to move from Middlesbrough, where the family then lived and had a chiropody practice, to Mansfield to be close to the specialist Harlow Wood Orthopaedic Hospital. The family home and the chiropody practice were sold and the Rowleys moved south – an excellent move for Bryan!

Towards the end of the Second World War Tom was shown a leaflet from an embryonic organisation called the Infantile Paralysis Fellowship (now The British Polio Fellowship).

The British Polio Fellowship had been founded in London in early 1939 but now was surviving with difficulty due to wartime restrictions. Publicity was hard to distribute in those challenged days but the leaflet set Tom to enquire further; he contacted Frederic Morena, the founder-secretary, and liked what he heard about developing an organisation of Polio-disabled people which was run by Polio-disabled people themselves.


The announcement, at The British Polio Fellowship’s Annual General Meeting in Cardiff in September, that Bryan Rowley has been elected Chairman of the Board of Trustees may have had some people thinking that they had heard the name ‘Rowley’ in connection with the chairmanship at some time in the past.

“rowley” – where have i heard that name before?

history corner

there is the revelation of a dedicated, hard-working, but, above all, caring person

who truly understood the challenges and

frustrations of Polio.

history corner


As Britain emerged from the horrors of warfare and normality began to return to everyday life, The British Polio Fellowship resumed its development. It is quite likely that, at this time, there may have been a conversation between Tom and Frederic Morena. The founder-secretary wanted The British Polio Fellowship to grow but, seemingly, had ideas of development led by a central organisation with activities based in London. Tom could see that this was hardly a practical notion; a London-based support organisation would not have the local ‘feel’ that would give the support and encouragement that the other founder of The British Polio Fellowship, Patricia Carey, spoke of when she described the Fellowship as being “something to lean on” for Polio-disabled people.

Tom decided that local branches were the way to do it. Morena probably disagreed but gave Tom the challenge – “get out there and start some branches then!!”

It is quite possible that Connie

Dawes, from Reading in Berkshire, was party to this conversation for, on the 22 April 1946, she held a meeting at her home, with Frederic Morena present, to inaugurate the very first branch of The British Polio Fellowship. Tom was not far behind and, a few weeks later, he held a meeting to inaugurate the Portland (Mansfield) branch of The British Polio Fellowship. Tom had secured the patronage of Winifred, Duchess of Portland – hence the name of the branch. By June 1947 the branch was reporting a membership of 120 people and was raising money to help build a new remedial swimming pool at Harlow Wood.

For many Polio-disabled people at the time, just the simple fact of being able to go to a branch

meeting was life-changing in itself; members of the Toc H organisation were recruited to offer transport and push wheelchairs which enabled people to get out of their homes and to meet with others in similar situations. It is hard for us today to imagine how important this new freedom must have been especially after the confines of six years of war.

In 1946 Tom’s job changed and he became a sales representative for a medical equipment supplier. This role involved travel all over the Midlands and North of England and Tom did not waste the opportunity to contact Polio-disabled people in the areas that he visited to ‘bang the drum’ for the formation of a new local branch. Our history books may show that many branches were formed at the initiative of a group of individuals or at a great inaugural meeting in the town hall but there is no doubt that the seeds of that initiative was planted by the quiet enthusiasm encountered during a visit from Tom Rowley.

tom did not waste the opportunity to contact

Polio-disabled people in the areas that he visited to

‘bang the drum’.


history corner

Have you memories of sporting achievement at a Fellowship or international event? If so, History Corner would love to hear your stories and see your pictures.

Please contact our Archivist, Barry North, at 33, Harry Davis Court, Worcester, WR1 2AA, telephone: 07973 326714, e-mail: [email protected]. All your material will, of course be returned to you unless you request that it be donated to the Fellowship archive.

By Barry North

As one seeks to discover more about the man who was Tom Rowley, there is the revelation of a dedicated, hard-working, but, above all, caring person who truly understood the challenges and frustrations of Polio. Tom had a flair for writing and his empathy can often be seen in the various articles he wrote for the bulletin over the years.

A report of the opening of the Newcastle hostel and workshop reflects a deep understanding of the opportunities which this pioneering project would give to Polio-disabled people as it offered a place to live along with training for getting a job in mainstream society. A similar depth of understanding and enthusiasm runs through

Tom’s report on the tenth National Christmas Party held at the Guildhall in London in 1955. Writing of an entirely different form of celebration to the opening of the Newcastle hostel there is still the same sense of joy at the gathering of Polio-disabled people who, somehow, seem to put the privations of disability behind themselves as they gather in fellowship. So often Tom uses the word “our” as he speaks of the event – the party was a true expression of The British Polio Fellowship which he worked so hard to foster.

Another Rowley report; another completely different activity – the Second National Swimming Gala in September 1956, but still the same infectious enthusiasm from Tom about the achievements of British Polio Fellowship members. A glimpse of Tom the man can be found in this report – events 13 and 14 were for severely disabled participants and were entitled “The Mostest with the Leastest” and Tom writes “How I hate that title”; to Tom Rowley no-one was the ‘leastest’ or the ‘mostest’; we are all in Fellowship together.

It is often said that behind every great man there is an equally great woman; this has been very true in the Rowley family. In his work for The British Polio Fellowship, Tom was much supported by Eva his wife. The importance that the Rowleys placed on a comprehensive approach to

the challenge of Polio was well-expressed by Eva when she spoke to The British Polio Fellowship Welfare Conference in 1955, her topic being “Bringing Up A Polio Child” (that ‘child’ now being today’s National Chairman but then aged 21 and at university). Eva stressed the point that some of the greatest problems are not the Polio itself, bad as that is, but the added burden, expense, and worry which are the direct impact of Polio on the family and household.

Eva dismissed the notion that Polio-disabled children should be treated as “poor little souls”, stressing that a Polio-disabled child is not ‘abnormal’ but is an ordinary child with a handicap. This philosophy of promoting independence and individuality is one which both Tom and Eva Rowley carried through The British Polio Fellowship so very successfully over many years and, one can be sure, made great differences to the lives of Polio-disabled people, their families and friends.

Tom Rowley retired from regular employment at the age of 68 and then continued to work hard for The British Polio Fellowship and as a volunteer at Harlow Wood hospital. Tom was National Chairman of The British Polio Fellowship from 1962 until 1967. He died in December 2000 after a life full of service to others.


my WAy

I was in Battle Hospital about 6 weeks on my back and then transferred to Wingfield Morris, Oxford, now Nuffield, and straight away put on serious physio in the gym and pool. We were in Cecil ward for boys from 11 to 16 so you can imagine it needing strict discipline, which Sister Buckler, who was 5ft of fury, was well able to provide!

After seven months I was discharged, now 12 years old, to a pub in Reading run by my parents. I went to The Avenue School for disabled kids which I can’t praise highly enough. Next I went to a central school which was keen on sport, not much fun for me as I couldn’t run although I boxed occasionally which was a way of getting out of detention if you sparred with the squad, trouble was it took a lot longer than 10 seconds to get up.

My dad died when I was 15 and I helped my mum with the pub and at 16 began my passion for motorbikes and started racing at 19. Like every biker I wanted to ride in the IOM TT but my G.P. wouldn’t sign the medical.

I attended the hospital of Gordon Hadfield, an eminent orthopaedic surgeon who agreed to see me on

condition I “let his students poke me about” as the medics at the time didn’t see too many old Polio victims. He went on to patch up Barry Sheene later and also used to experiment with bones from the bone bank and power tools in his shed.

Most of my working life was spent as a foundry pattern maker, thanks to the advice of my inspirational physio Mr Smith (physio to Reading Football Club), who encouraged me to try to get a job working with my hands and some physical work.

I have a lovely supportive wife, two great daughters and a nice bright grandson, so consider myself lucky, and still on my feet, just about!

my WayAlan Cox

Please send your My Way submissions and photographs to [email protected] As space is limited, regrettably we can only publish a maximum of 600 words, and one or more images.

1949 I got my Polio a few days after winning the junior championship at the Reading Schools Gala. Hundreds of kids, filthy water, warm weather, perfect for Polio.

like every biker i wanted to ride in the iom tt but my G.P.

wouldn’t sign the medical.

november/december 2014 pps day - britishpolio.org.uk · pps day rees pach arliament ... email:...

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