1

North West Midlands Cystic Fibrosis Centre

There have been a number of staff changes at Royal Stoke over the last few months with the

Band 6 Physiotherapists rotating and Adult Support Nurses have been in place since Neil and

Keely have left. You have all been very busy raising money for your local hospitals as well as

the staff getting involved with marathons and 5K Runs, these donations will help patients with

Cystic Fibrosis to improve the service and environment in the hospital. You will also be pleased

to know that patients with CF are eligible to free Wifi when they visit Royal Stoke and don’t

forget if you or your child is an inpatient for 2 weeks or more you can apply for free car

parking.

Also there is a website which is updated on a monthly basis with all the latest Centre updates,

recipes, fundraising, team news and much more! If you would like to become involved in the

Website group, we do have a teleconference facility to link into the meetings. All you need is

a phone and a PC! Keep checking back to see what is happening in your Centre!

http://northwestmidlandscfcentre.btck.nhs.uk

If you would like to contribute to the next edition, please contact Erin Hodgetts, Cystic

Fibrosis Coordinator on telephone 01782 675105 or email cf.team@uhns.nhs.uk.

Spring/Summer 2015

Page: Page:

2. - Your Team News 7. - Kirsty Lawton Trust Fund

- University Academy

Kidsgrove

- Christmas Fundraiser

3. - EastEnders Storyline

- Holidays

- European CF Conference

‘Living with CF’ Film

8. - Stafford Half Marathon

- Forsbroook Primary

School

- Easter Raffle

4. - Parents Evenings

- Transition and University

- Your Inpatient Stay

- Free!

9. - Bloxwich Golf Club

- Masonic Society

- More Thank Yous!

- How You Have Helped

5. - CF Training Day

- Fantastic Achievements!

10-

12.

-Fundraising Events

- Cash Stores

6. - Abbots Bromley Football

Club

- Tough Mudder

- Wear with Pride…CF

Ribbon Sale

13. - Contact Information

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Dr Thomas married Martin on the 9th May 2015 so you will now know her as

Dr Angela McGowan! Instead of wedding gifts, they invited guests to

donate to charity with one of these charities being the CF Fund at UHNM

Charity. An amazing £2820 was collected to put towards the development

of the North West Midlands CF service. The team would like to thank

Angela and Martin as well as wishing them all the very best for the future!

• Neil Wheeler retired in April 2015. Sue Hope will be coming back

on ad hoc basis working alongside Laura.

• Keely Felton was successful in being recruited to the Deputy Ward

Manager post on Ward 233. Congratulations Keely from the CF

Team!

• Rachel Ritchie and Helen McCreary have completed their

physiotherapy rotation in CF and have been succeeded by

Stephanie Hagger-Knight and Laura Swinscoe. Thank you for all

your help!

• Dr Kamini Jain has succesfully got a Registrar post in Bristol, the paediatric team at Stoke all

wish well in her new venture!

Laura Swinscoe and Stephanie Hagger-Knight are on

rotation for 6 months in the physiotherapy role and

Christopher Hollinshead and Helene Barker are on

secondment for 6 months in the Support Nurse roles at Royal Stoke.

Laura has recently joined the Adults CF Team at Stoke. She studied physiotherapy at Keele

University between 2008 – 2011. She started working at

Stafford Hospital in 2011 and left in September 2014 to join

the Royal Stoke as a senior rotational respiratory

physiotherapist. She has recently worked in the medical

and paediatric teams, before moving into adult CF at the

start of July 2015. She is a keen hockey player and enjoys

running, she is currently training for the Birmingham Half

Marathon in October 2015.

Steph trained in Leeds and graduated in 2008, starting her

career at Leighton Hospital before moving to Stoke in 2009.

She became a Senior Respiratory Physiotherapist in 2013. She joined the

Paediatric CF Team from Critical Care in July 2014 on a rotational basis. In her spare time she is

currently packing to move house, running around after her 18 month old daughter and

expecting another baby in November!

Chris has been involved with CF since he was a student with

his elective placement being at Wythenshawe Adult CF

Centre. He was the first student to undergo a placement

outside of the area. Once qualified, Chris applied for the

Staff Nurse role on Ward 79 (the location of the acute

respiratory ward before Ward 233) as he knew they cared for

people with CF. He became CF Link Nurse on the ward and

from April he has been a CF Support Nurse.

Helene recently joined the CF team as a Support Nurse in

April 2015. She also works on the acute respiratory ward Ward 233 at Royal Stoke University

Hospital where she has been a staff nurse for 3 years.

Laura Swinscoe

Steph Hagger-

Knight

Chris Hollinshead Helene Barker

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Recently there has been a Cystic Fibrosis storyline in EastEnders

which has raised questions from our families and what this means

for their children. The Cystic Fibrosis Trust worked closely with the

EastEnders production team to ensure that the condition was

portrayed accurately. It is also worth bearing in mind that the

Soap will add drama and so sometimes it may be distressing to

watch. It is also worth noting that every patient with CF is

different and their regimes and treatments are also different and so you or your family

member may not have the same severity as the characters in EastEnders. If you are worried

about the programme and have any questions about what this may mean for you please

speak to any of your CF Team.

Many of you are going on holiday to some lovely places in the

world! Please don’t forget to ask your CF Team Secretary for a

holiday letter well in advance. This will help you to travel through

airport security with minimal restrictions as well as notifying them

if you have a Port-a-Cath in situ.

Some airlines and/or insurance companies ask you to have a ‘Fit

to Fly’ assessment. You may also need an assessment if you have low lung function and

require oxygen during the flight. You need to arrange this in plenty of time so that you are

prepared and ready for your holiday. Please contact your CF Team if you need help with

organising this.

Dr Ang Ho, Zoe Rushton and Michelle Edinburgh attended the

European Cystic Fibrosis Society Conference which was held in

Brussels, Belgium in June. The conference is facilitated by world

renowned professionals providing advice and useful information

on compliance, Social Media, Infection Control and much

more.

The team are very proud of the film produced by Inspired

Media but more so for the patients and families who made

the film happen. Erin had the idea to produce the film as an

educational tool for delegates at the CF Training Day as well

as promoting what CF is to people who may not be aware of

the condition. The patients and families involved were

Callum and Cara Wilshaw, Rachael Parrott and Denise

Hasketh and of course Siobhan Davies! A huge thank you to all those who were involved! To

watch the film, copy and paste this link into your web browser.

https://vimeo.com/inspiredfilm/review/127272734/1fa269f094

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Belinda Gower (Children’s Nurse Telford) and Dr Martyn Rees

(Consultant Paediatrician) organised a very successful evening on

Thursday 9th July 2015 for parents whose children attend the

Shrewsbury and Telford hospitals. Dr Angela McGowan (Consultant

Respiratory Physician), Laura Barlow (Clinical Nurse Specialist), Ana

Ireland (Clinical Nurse Specialist) and Dominic Kavanagh (CF Trust

Clinical Care Advisor) were invited to discuss the transition process and

what to expect in the adult service. The evening was also an opportunity for the parents to

socialise with each other and staff. An evening for parents who attend Royal Stoke is being organised for Wednesday 7th October

2015 at The Borough Arms, Newcastle-under-Lyme. Invites will be sent out soon so please

register your interest!

For many young people who are transitioning into the adult service,

they may also be thinking about which University to go to and how this

will impact on their CF care. The North West Midlands CF Centre will

be your main source of CF care and the team can link in with the CF

Centre near to your University so that you can continue your care

away from home. To help you organise your commitments, your appointments at North West

Midlands will be booked around your University course. Please speak to your CF Team to work

out the best options for you.

National CF guidelines (‘Standards for the Clinical Care of Children and

Adults with cystic fibrosis in the UK’ second Edition) state if a patient is in need

of an urgent course of treatment they should be admitted within 24 hours of

the decision being made. If a patient requires a non-urgent stay, a bed is to

be made available within 7 days.

The ward staff and the CF Team work extremely hard to make sure a bed is

made available for patients as soon as possible whether it be elective or

emergency inpatient stay. The wards are under immense pressure from other areas in the

hospital so if a bed becomes available, any time of the day or night, patients need to make

sure they are able to get themselves to the ward when they are contacted. It is impossible for

the ward or team to predict a time when a bed will become available. If patients refuse a

bed or delay their attendance, this can undermine the importance of the guidelines.

Please don’t forget if you attend Royal Stoke University Hospital, you

are entitled to unlimited Free Wifi. Please speak to a member of your

team for the username and password to get this set up on your smart

phone, tablet or laptop.

Also if you or your child is an inpatient at Royal Stoke University Hospital

for 2 weeks or more you are entitled to a free parking pass. Please

contact either a member of your team, CF Office 01782 675105 or

email cf.team@uhns.nhs.uk with your car registration number.

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The yearly training day

was back again! This

time it was held in the

beautiful surroundings

of Keele Hall. The event

was sponsored by

pharmaceutical and

product companies so that delegates from Staffordshire and Shropshire hospitals and schools

could attend this free event on Thursday 14th May 2015. The day was split between

presentations and workshops discussing what CF is as well as practical sessions with delegates

trying out equipment and ports. A video of patients and families was launched at the event

as well as a mother of a patient with CF also presented her

point of view. The

delegates found it

positive and learnt a lot.

The next event will be

held on Thursday 12th

May 2016, please

encourage teachers and

work colleagues to come

along!

Morgan Dickenson and Sophie

Ravenscroft have both worked

extremely hard to achieve their

goals earlier this year. Morgan

passed her C&M Grade 6

gymnastics examination and

Sophie won 2 silver medals for

England at the IS Skating

competition in Glasgow.

Callum Wilshaw received a

Community Award at Trentham

High School for his work with the

CF Team producing an

educational film for professionals

and a Facebook page.

The

Callum and Cara Sophie

Sophie

CF team are

very proud of

their

accomplishm

ents and

congratulate

them all ☺

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Abbots Bromley Football Club organised 44 runners to take part in the

Manchester Marathon and raised a huge £1100 for UHNM Charity CF

Fund. Siobhan Davies was presented with the cheque at the

presentation evening on Friday 24th July.

Pictured is Martha Murray with the big cheque!

The CF Team and UHNM Charity raised a fantastic £564

in support of Fran's double marathon challenge! We

all ran under the 40 minute mark, which was a huge

achievement for beginners! The team consisted of Erin

Hodgetts (CF Coordinator) and her husband Bobbie;

Ange Black (CF Support Secretary) and her husband

Jase and son Alex; Emma Robertson (UHNM Charity

Deputy Manager); Kelly Bakewell (CF Paediatric

Support Nurse) and her husband Sandy. The team

were also supported by friends and family cheering them on the day.

Joseph Davies’ dad, Phil, and his friends took part in the

Tough Mudder challenge earlier this year in aid of UHNM

Charity CF Fund. He raised almost £500 undertaking the

gruelling 10-12 mile obstacle course and the money raised

contributed to Fran’s double marathon fundraiser.

Jack Williams’ mum, Steff, has made and is selling CF ribbons in support of

UHNM Charity CF Fund. She would like to sell as many of these ribbons as

possible as it is ‘a charity really close to our heart’.

To support UHNM Charity and to buy a ribbon, the Just Giving address

is https://www.justgiving.com/Steff-Williams1/

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The Kirsty Lawton Trust Fund are great supporters of the CF service and

have recently donated a fantastic £6,000 for UHNM Charity through

fundraising evenings and events. The Trust Fund has a website

http://www.kirstylawtontrustfund.co.uk/ and Facebook page

https://www.facebook.com/KirstyLawtonTrustFund updating

supporters on events and money raised.

The photo is of Kirsty’s dad, David, presenting the cheque to Siobhan

Davies (Clinical Nurse Specialist), Wendy Dale (Specialist CF

Physiotherapist) and Erin Hodgetts (CF Coordinator).

Mr McCue, Mr Smith and a group of Year 11

students at University Academy Kidsgrove were

proud to present a table top tombola and

donations for future events. Cakes were baked for

the Christmas fundraiser by students and they were

given certificates by the CF service as a thank you

for their support:

Chris Steppe, Leanne Pepper, Annabel Polles, Dave

Armstrong, Kieron Taylor, Emily Scragg, Leah

Pellington, Francesca Peers, Jamie Ferns, Keeleigh

Holford, Jasmin Mellor, Megan Looksan, Courtney Sarlett, Jade Witham, George Shaw, Isabel

Finn, Beth Parton and Jordan Mayers.

The photo is of teachers Mr McCue and Mr Smith along with Head Girl Toni Moran and Head

Boy Jordan Benton presenting the tombola and donation to Ange Black (CF Secretary),

Wendy Dale (Specialist CF Physiotherapist) and Joanne Frain (Welfare Advisor for CF Service).

The CF Team at the Royal Stoke University Hospital

raised almost £650 at the Christmas fundraiser for

UHNM Charity on Wednesday 3rd December. There

was a raffle, tombola, homemade cards, cake stall

and make a wish tree. It was a fun successful day

and brightened lots of patients and visitors day! The

day was also part of the ‘UHNM Launch of

Christmas’ where there were carol singers from a

local school and the big light switch on by Mark

Hackett, Chief Executive.

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Siobhan's nephew, George, has raised £2,600 for the UHNM Charity

by running in the Stafford Half Marathon. His funds will help people

with Cystic Fibrosis and children's Oncology at UHNM in memory of his

friend.

Siobhan and her family also support the UHNM Charity by organising

car boot sales, baking cakes and donating items for the various CF

Team fundraising events.

Katy Jones was invited by

her school, Forsbrook

Primary School, to speak in

front of students about CF

and what it means for

living with the condition.

All the students and staff

wore yellow for the day

and held a cake sale. An

excess of £380 was raised

by the school for UHNM

Charity which is brilliant!

H Goodwin and Son Funeral Home kindly donated an Easter Egg,

chocolates and cuddly toy for the CF team to raffle. Jo Frain went

around the wards and departments at Royal Stoke University Hospital

and collected £110 for UHNM Charity. One of the children from

Children’s Outpatients pulled out the winning ticket and the winner

was....our very own Siobhan Davies!

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Bloxwich have done it again! This time raising £5,000 for UHNM Charity. This is an

amazing amount and the CF Team are eternally grateful for their support.

In total, the Shropshire Masonic Society have

donated £1300.60 in July to the Shropshire

Children’s CF Service. Vitalograph Spirometry

equipment has been bought. The picture is of Mr

Colin Biggs, Grandfather of Charlie Smith, and Mr

Peter Robinson, both of whom are of the Shropshire

Masons Society presenting the cheque to Dr Martyn

Rees, Consultant Respiratory Paediatrician.

The Lady Freemasons have kindly donated £325.

The Saxon Crosses Freemasons have donated £200.

• Evie Pritchard’s family have raised £400.17.

• £305 from donations from 2 funerals.

• Final total of donation from Stephanie Sutton’s family

and friends came in at £838.26

So what has happened with all this money raised? As soon as we get the money in we

already have an idea of what to spend it on as well as donors being specific on what the

money should be spent on. Equipment is expensive ranging from £600 for an eFlow to £1600

for a lung function kit. Over the past year UHNM Charity have spent money on:

• eFlow nebulisers

• Tobramycin syringe drivers

• nSpire Lung Function Kits at Royal Stoke

• Laptops to use with nSpire and iNeb

• Vitalograph Lung Function kit at Shropshire

• Children’s Hand Held Records

• Advertisement Banner

• Portable Pulse Oximeters

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Date and Charity Event and Charity Location Contact

Wednesday 5th

August

Cake Sale and Children’s Book

Stall

To raise funds for UHNM Charity.

Come along and support your

CF Centre by buying a cake and

a book! Please contact Erin if

you are able to make a cake

which we can sell!

Main Atrium,

Royal Stoke

University

Hospital

To help or for

more

information,

contact Erin

Hodgetts on

01782 675105 or

cf.team@

uhns.nhs.uk

Saturday 8th

August

North Staffordshire Branch Charity

Stall

Please show your support by

popping along and trying your

luck on the tombola (prize every

time).

Stoke South

Carnival,

Fenton Park,

Victoria

Road, Stoke-

On-Trent ST4

2HQ

For further

information or if

you have any

prizes you wish

to donate

please contact

Fran on 01270

842984

Saturday 8th

August

North Staffordshire Branch Charity

Stall

Please show your support by

popping along and trying your

luck on the tombola (prize every

time).

Summer

Fete, Sandon

Village Hall,

Sandon,

Staffordshire

ST18 0DN

For further

information or if

you have any

prizes you wish

to donate

please contact

Fran on 01270

842984

Sunday 9th

August

Collection at Britannia Stadium

A number of the team, parents

and patients are helping to

collect money at the first match

of the season between Stoke

City and Liverpool. If you would

like to help with the UHNM

Charity collection, contact Erin

for more information.

Britannia

Stadium,

Stanley

Matthews

Way, Stoke-

On-Trent ST4

4EG

To help or for

more

information,

contact Erin

Hodgetts on

01782 675105 or

cf.team@

uhns.nhs.uk

Saturday 29th

August

North Staffordshire Branch Charity

Stall

Please show your support by

popping along and trying your

luck on the tombola (prize every

time).

Stafford RAF

Station Open

Day

For further

information or if

you have any

prizes you wish

to donate

please contact

Fran on 01270

842984

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Date and Charity Event and Charity Location Contact

Saturday 5th

September

North Staffordshire Branch Charity

Stall

Please show your support by

popping along and trying your

luck on the tombola (prize every

time).

Eccleshall

Show

Eccleshall

Showground

Sugnall Park,

Nr Eccleshall,

Staffordshire,

ST21 6NF

For further

information or if

you have any

prizes you wish

to donate

please contact

Fran on 01270

842984

Thursday 10th

September

Swing For a Cure Golf Day

Full English Breakfast 10-10.30am

18 holes of golf, team prizes and

individual prizes for champion

golfer, nearest the pin, beat the

pro, longest drive and a putting

competition. The evening will

consist of a three-course meal

with after-dinner speaker.

Auction and raffle. All this for a

fabulous price of £75 per golfer;

if attending the dinner only, £30.

Single golfers are welcome.

Sponsorship packages of holes,

prizes, putting competition etc

are welcome.

Aston Wood

Golf Club

Blake Street

Sutton

Coldfield B74

4EU

For more

information or

to book your

place/team

call Paul Shelley

on 07966 013

885.

Saturday 26th

September

Race Night

Tickets to go on sale soon,

webcast available for patients

who are unable to attend. Food

and bar available. All proceeds

for the CF Fund at UHNM Charity.

Penkhull

Village Hall,

Trent Valley

Road

Penkhull,

Stoke-On-

Trent ST4 5JB

To help or for

more

information,

contact Dr

Anglea

McGowan on

01782 675105 or

cf.team@

uhns.nhs.uk

Saturday 26th

September

Born Survivor, Manchester 2015

Born Survivor is the ultimate

military obstacle course. With

over 30 obstacles on a 10km

course, have you got what it

takes?

Capesthorne

Hall,

Siddington,

Macclesfield

SK11 9JY

Contact

the Events

Team 0300 373

1100

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Date and Charity Event and Charity Location Contact

Thursday 26th

November

Ladies Night

An ultimate ladies night of

pampering, clothes, jewellery,

make up and lots of christmas

gift ideas. Tickets available

soon…£2.50 before the evening,

£3 on the door. Tombola and

raffle with lots of prizes. Bar and

refreshments available on the

night. Come along and enjoy

the evening! All proceeds for

the CF Fund at UHNM Charity.

Penkhull

Village Hall,

Trent Valley

Road

Penkhull,

Stoke-On-

Trent ST4 5JB

To help or for

more

information,

contact Ange

Black on 01782

675105 or

cf.team@

uhns.nhs.uk

Hospital Charitable Funds

The hospitals at Stoke, Shrewsbury and Telford have their own Charities dedicated to raising

funds for patients with Cystic Fibrosis. You can raise money for the charities by contacting

Erin Hodgetts on 01782 675105 or cf.team@uhns.nhs.uk.

For up-to-date information on events and events in other regions please visit:

www.cysticfibrosis.org.uk and http://northwestmidlandscfcentre.btck.co.uk

The Cash Stores on Lichfield Road in Abbotts Bromley have obtained a charity

collection tin for customers to put their loose change. All proceeds will be

added to the CF Fund, UHNM Charity.

13

Department Address Contact Contact Details

Stoke-on-Trent (regional centre)

Royal Stoke

University

Hospital

Cystic Fibrosis, Children’s

Outpatients, Main

Building, Newcastle

Road, Stoke on Trent ST4

6QG

Paediatric and adult

services

Telephone:

01782 675105

Facsimile:

0844 244 8307

E-mail: cf.team@uhns.nhs.uk

Psychology

Service

NEW ADDRESS: Blurton

Health Centre, Ripon

Road, Blurton ST3 3BS

Michelle Edinburgh –

Mon/Tues (adults) and

Dr Ruth Fishwick

(paediatrics)

0300 123 0977

Dr Fishwick – 07809 332249

Shropshire

Royal

Shrewsbury

Hospital

Paediatric CF Service,

Mytton Oak Road,

Shrewsbury SY3 8XQ

Rachel Lugg and Tash

Grocott, Community

Nurse

01743 450855

Christine Law,

Physiotherapist

01743 450800

Dr Clair May, Paediatric

Clinical Psychologist

01743 282373

Hannah Joscelyne,

Dietician

01743 261462

Adult CF Service,

Mytton Oak Road,

Shrewsbury SY3 8XQ

Dr Jim Moorcroft,

Respiratory Consultant;

Ana Ireland, Clinical

Nurse Specialist

01743 261240

07837 096755

Princess

Royal

Hospital

Paediatric CF Service,

Apley Castle, Telford TF1

6TF

Dr Martyn Rees,

Consultant

Paediatrician Dr. Senthil

Kumar Sethuraman

01952 565985

Paediatric Team same

as above plus:

Belinda Gower,

Paediatric Respiratory

Nurse Specialist

01952 641222

Burton-on-Trent

Community

Children’s

Nursing

Team

56 High Street, Burton-

on-Trent DE14 1JS

Angie Malkin

(Community)

01283 504 867

On call 07817 756 336

Cystic Fibrosis Trust

Cystic

Fibrosis

Trust

NEW ADDRESS: One

Aldgate

Second floor

London

EC3N 1RE

Dominic Kavanagh,

Clinical Care Adviser

0300 373 1057

dominic.kavanagh@cysticfibrosis.

org.uk