newsletter autumn 2016 - julia's house€¦ · our wiltshire address suite 1, second floor,...

Young AmbAssAdor speciAl

supporting children indorset and Wiltshire

newsletter

Thank you for your love and supportTeenager’s moving tribute to the Julia’s House nurses and carers who helped her

Autumn 2016

more care in WiltshireRolling out our respite across Wiltshire

gift that goes on

giving

How leaving a legacy supports

our work

Julia was my inspiration

Nurse Lisa on why she decided to join Julia’s House

Historic donationQueen Victoria’s

signature creates a stir

A little known but vital fact of life in children’s hospices is how hard it is to

recruit enough children’s nurses. Paediatric nursing is a rare specialism and we almost always have vacancies.

It’s not just a Julia’s House problem, or even a children’s hospices problem. There is a national shortage of paediatric nurses.

Whenever you hear governments announce plans for new treatment targets, world class care or 24/7 cover, remember that without enough clinical staff, it doesn’t mean much.

We work with NHS doctors but we don’t employ them. We are proud to be a nurse-led service. Indeed you have only to sit in, as I often do, on nursing discussions about referrals, medicine protocols or end of life care planning, to realise their admirable expertise.

When nurses do join Julia’s House, we aim to be such a good and caring employer that they wouldn’t want to work anywhere else. We try to do this for all our staff and volunteers, but we especially recognise the emotionally draining nature of the work that all our clinical staff do.

So if you’re a registered children’s nurse looking for work with a sense of mission, where compassion is paramount and quality will never be squeezed in the name of profit, let us know.

And if you’re a young person assessing career choices, consider children’s nursing. It’s not just your local children’s hospice that needs you. Your country needs you too.

2 Julia’s House Newsletter www.juliashouse.org

Martin EdwardsChief Executive, Julia’s House

welcome

Our Dorset address Julia’s House, Barclays House, 1 Wimborne Road, Poole, Dorset BH15 2BB

Paediatric nursing is a rare specialism and we almost always have vacancies

stay in touch...

Follow us facebook/juliashousedorset twitter/@Julias_House

Call us 01202 644220 Email us [email protected] Visit us www.juliashouse.org

Registered Charity Number 1067125

Our Wiltshire address Suite 1, Second Floor, Minton House, Minton Distribution Park, London Road, Amesbury, Wiltshire SP4 7RT

Julia’s House nurse Jen

calling all would-be paediatric nurses – your country needs you!

Working for Julia’s HouseOne of our nurses talks about what makes her job so special – pages 8 and 9

Welcome to our autumn newsletter!

inside this issue...

Julia’s House Newsletter 3

contents

6 progress report Update on our new Wiltshire hospice

8 our nurses Charity’s namesake was my inspiration

10 From the heart Ebony talks about her time at Julia’s House

13 Young Ambassadors Meet the young people who do us proud

14 There for the family What our mums, dads and siblings have been up to

16 A lasting legacy Leaving a gift in your Will

19 christmas is coming! Cards, calendars and two new carol concert venues

20 meet the children Say hello to Saffey, Nikhil and Ollie

Call us on 01202 644220

latest news

Thank you to everyone who responded to our

recent newsletter survey. When we asked you what you enjoyed most, the majority (75%) of you said that you like to read about Julia’s House children and their families.

Many of you also told us that the work of our nurses and carers is of great interest to

you (65%): “Your magazine is an inspiration. I love it. There are always positive sides to the stories – really uplifting.”

We love sharing these stories with you because they show what a positive difference our care and respite can make to so many children locally – and all thanks to your wonderful support. Enjoy this issue!

Thank you for reading!

If you have received this newsletter by post, you’ll be pleased to know it hasn’t cost us a penny to send. Barclays generously cover the postage costs for all our mail.

Our postage is free!

Not wanting to be outdone by all the excitement

in Rio, our Family Support Team decided it was a golden opportunity to host some Olympic craft sessions at their Housemates community events. Families met up for coffee and a chat and children had fun making Olympic medals, torches and keyrings.

A winning formula

Enjoying Housemates

Summer raffle successOur first ever Summer Raffle raised more than £41,000! Thank you so much to everyone who so generously bought tickets – but especially to the lovely lady from Bournemouth who had the winning ticket – and donated her £1,000 prize back to us. The raffle was so successful we are planning to make it an annual event.

A letter signed by Queen Victoria that turned up

in an anonymous donation of bric-a-brac has raised £395 for us!

Folded and tucked away in the corner of a cardboard box, the official document dated 1860 marked the appointment of William Jacob as an Ensign in the Honourable Artillery Company. It is counter-signed by Sidney Herbert, the then Secretary of State for War and the man responsible for sending Florence Nightingale out to the Crimean War.

The letter was part of a larger donation that came into our shop and warehouse at Creekmoor and very nearly got thrown away! Luckily a volunteer who was sorting donations spotted it and flagged it up.

“I was in the sorting area

We are amused!

searching for a biscuit and one of the volunteers was waving the document in one hand and a Jammy Dodger in the other! We have no idea where the donation came from, “ said Graham Crabb, who is responsible for pricing and selling some of the more unusual

latest news


items donated to Julia’s House.Following some detective

work by Graham, which included sending the letter away to be authenticated by signature experts and contacting the Honourable Artillery Company archive, it was sold through our eBay shop.

Other interesting items that

The letter was part of a larger donation that came into our shop and warehouse at Creekmoor

Have you visited our eBay shop?It’s full of interesting items. Go to ebay.co.uk/usr/juliashouselimited

have raised money for us through eBay are: a 1980s ZX Spectrum personal Computer, £585; an Inflatable Wetline 230 RIB, £203; an incomplete set of Crown Devon Stockholm crockery, £600 and a vintage Corgi James Bond DB5 Aston Martin Model Car, £67.

Document signed by Queen Victoria

Queen Victoria’s signature rescued from a box of donated bric-a-brac

Ever wondered what Julia’s House is really like? Find out

for yourself why our families and children love spending time at our Dorset hospice.

We have another ‘Open House’ event coming up on 30th November. It’s a wonderful opportunity to have a look

around, meet the team and enjoy a cuppa and some cake. There will also be the chance to stock up on Julia’s House Christmas cards and calendars.

RSVP by calling our community fundraising team on 01202 644220. We look forward to seeing you there!

As you can see from the story opposite,

you never know what you might find when you volunteer at our donation sorting warehouse at Creekmoor!

We have hundreds of bags of donated goods arriving each week that need sorting, pricing and sending on as fresh stock to all our shops. It’s a huge task that requires many pairs of hands!

If you would like to help in the shop or be a back room ‘treasure hunter’, call June on 01202 644220.

open House invitation

Be a treasure hunter!

Call us on 01202 644220 Julia’s House Newsletter 5

latest news

Visit our Corfe Mullen hospice

A group of our boys thoroughly enjoyed a visit

from Willow the donkey who travelled all the way up to Corfe Mullen from The Donkey Sanctuary in Devon. Much patting, cuddling and fuss ensued – but Willow took it all in his stride.

The boys were very interested

it’s bray time!

and asked lots of questions in between posing for pictures with their new four-legged friend. Our Playmaker Assistant Stacey helped Adam to make a replica donkey out of fabric. Our thanks to The Donkey Sanctuary, staff and, of course, Willow, for providing a lovely session for the lads.


When we launched our small Wiltshire care

service two years ago we were supporting just a handful of families, mostly in Salisbury.

Today, with our new Devizes hospice on the horizon and our expanding team of dedicated nurses and carers, we are pleased to report that we can offer community-based respite in the vast majority of the county.

A flurry of new referrals are coming in each month with new families as far afield as Marlborough, Calne and Corsham now being able to take advantage of home-based care sessions.

Six new referrals came in during the summer holidays, with many

With the new hospice taking shape and our community care team reaching even more families, we are making our mark in the county

It’s all growing well in Wiltshire

more accepted or pending. Julia’s House is currently supporting 33 families across the county.

“No matter where in the county a family lives, if we can possibly help, we will,” said Wiltshire Lead Nurse Heather Philpotts. “And once the new hospice is open they will have even more access to our services, including social events for siblings and parents.”

Back at our Bath Road site, work is progressing at a cracking pace. The building itself is far from glamorous to look at right now but the hollowed out shell has revealed the potential of the space. Julia’s House Devizes will be small enough to feel homely, big enough to be a fantastic

social venue for our families and their children.

As autumn continues the garden will begin to take shape. Bare earth and utility trenches will be replaced with landscaping, decking and sensory planting. For a bird’s eye view of the site visit juliashouse.org/wiltshire

We have been hosting a number of hard hat tours of the site, showing supporters just how the project is progressing. Among the most recent group to don hard hats and hi-viz vests were three of our Wiltshire Ambassadors – Lady Venetia Fuller, Peter Wragg and Claire Perry MP.

Wiltshire hospice

A hard hat tour in action!


No matter where in the county a family lives, if we can possibly help, we will

One of those conducting the tour has a very special reason to feel excited and proud of the new hospice. Rebecca Thursby, mum to three-year-old Sophia who receives care from the Julia’s House team, is directly involved in our Wiltshire build – as the site surveyor.

Rebecca, who is responsible for the financial management of the build, said: “This feels like a very personal project because I know how much it will mean,

not only to my family but to families all over Wiltshire.

“We are all working really collaboratively which is so rewarding. I have even had some input in the design from my perspective as a parent. I am so pleased to be part of it all.”

Roll on Spring 2017 when we can finally open the doors on this amazing new opportunity for the families of life-limited children in Wiltshire. It will be a very special moment – we can’t wait!

The Wiltshire Gazette & Herald newspaper’s 200 Appeal is making astounding progress. The paper is well on target to fulfil its pledge to raise £100,000 for us – enough to fund our Wiltshire carers for a whole year!

Very appealing

Wiltshire hospice

Bird’s eye view of Julia’s House Devizes

We are currently looking for more paediatric nurses to join our expanding Wiltshire care team. It’s a chance to make a real difference to families on your doorstep – and obviously be involved at a very exciting time in our charity. Visit juliashouse.org/jobs for more.

Spread the word

Our Devizes Friends’ Group has raised more than £40,000 in just 18 months. All volunteers, they have been very pro-active in organising and managing a number of highly successful fundraising events including a summer ball.

Friends indeed

Our community team are planning a very festive fundraiser indeed – a Santa Fun Run! It will take place in Devizes on 11th December. To find out more call Liz Froud on 01980 677105.

Santa cause


nurse lisa everall on meeting Julia perks and what working for Julia’s House means to her

Julia was my inspiration

Julia was a very inspirational and determined lady. Little did I realise years later I would be working for the charity she inspired

It was while I was working on a children’s ward at

Poole Hospital that I first met Julia Perks, the nurse who was to be the inspiration behind Julia’s House. In those days if you had a very poorly child and needed support there was only one place you could get any help – at hospital.

Julia worked as a community nurse and always felt very frustrated that there wasn’t the support for parents really struggling to cope alone at home. They could not get the medical or emotional help they needed, let alone a break.

Julia was a very inspirational and determined lady. Little did I realise years later I would be working for the charity she inspired.

When I was newly qualified my very first nursing job was on a children’s ward. I became a full-time paediatric nurse. I also worked as a cystic fibrosis community nurse and a general community nurse. I loved the combination of working in the community, particularly with children.

Part of my role was supporting under-fives with complex health needs but I always felt very time constricted. I didn’t feel I could give them enough.

All that changed after I went along to an open day for nursing

professionals at Julia’s House. It was one of those inspirational moments when I realised that this was what I wanted to do – and I haven’t looked back.

It is such a completely different way of working. Julia’s House has a great team atmosphere, good training and the feeling you are part of something much bigger, really making a substantial difference to the everyday lives of families.

It has been a brilliant move for me. I have learnt to slow down,

our nurses

to be able to give families the time they need and through giving that time really come to know who they are and what they need from Julia’s House.

The lovely part is that because I was already nursing in the community as part of the health visitors team and had worked on the wards for a long time, lots of the families already knew me. I have been able to build on those relationships.

We are so much more than nurses, we offer support in so many ways. I helped a mum who

was struggling with some forms she needed to fill in. She was so stressed she just couldn’t cope with the forms on top of everything else she was battling with. Little things like that make a big difference to how families cope.

My job also includes building relationships with hospitals and giving families the confidence to have their child at home when they are near the end of their life. With the Julia’s House team behind them they are empowered to make choices like that.

When you are nursing a very sick child in the NHS, no matter how well you have come to know that child, know that family, your contact with the family ends with that child’s death. As a Julia’s House nurse you know you can go back to that family and carry on supporting them, the mum, dad, the children to help them get back on their feet.

Our commitment to a family doesn’t end with the death of their child, we keep on caring and being there for them.


We are currently recruiting for new Senior Team

Nurses for Dorset and Wiltshire. These are both full time (35 hours per week) positions but part-time may be considered – with a minimum of 25 hours per week.

The Wiltshire role will initially be based in our Amesbury office and

Join the Julia’s House team

our nurses

Nurse Lisa with Euan

will move to the new hospice in Devizes when it opens next Spring. The successful candidate will work in the community and the hospice. The Dorset position will be community- based and work out of our Wimborne office.

To find out more and for a job application form please visit juliashouse.org/jobs

Ebony’s story


Julia’s House supported our whole family. Just knowing that you were a phone call away, made so much difference


Ebony’s story

You haven’t seen the last of me!This summer, we welcomed

18-year-old Ebony and dad, Tyrone, to her final session at the hospice. It had been 10 years since Ebony had come to the hospice for the first time.

Everyone at the hospice was feeling emotional at the thought of this chapter of Ebony’s life coming to an end. Claire, one of her regular carers, summed up Ebony’s time at the hospice: “Ebony has been a joy to work with. Most of the time it didn’t feel like work, and simply hanging out with a really fun and exciting person. We’ve had lots of laughter together, and caused a little mischief within the hospice (mainly with glitter or paint). I was always excited to find out when she was in next or when I was going to visit her at home.”

Dad Tyrone, said: “In many

A new chapter for Young Ambassador ebony

ways this is a happy day; we never thought Ebony would reach 18.”

Talking about the time when Ebony’s family first found out about Julia’s House, Tyrone said: “When we were first referred we were in a dark place. We felt isolated. Ebony’s condition is so rare and we felt very alone. As a couple we would have really struggled without Julia’s House; you hear about couples getting divorced under the strain. Julia’s House supported our whole family. Just knowing that you were just a phone call away, made so much difference.”

Ebony’s mum, Lorna, agrees:

“When we found out about Julia’s House, we were at rock bottom. We were trying to get to grips with Ebony’s diagnosis. We had no support locally. It was our social worker who suggested Julia’s House.

“We started attending sessions and it was the best thing we have ever done! Ebony could relax and be herself and she could talk to people at Julia’s House, like nurse Ronnie, if she was feeling a bit down and didn’t want to talk to us. Sometimes she didn’t want to trouble us because she knew that we had a lot to deal with because her brother had epilepsy.”

I have cried so much my head has hurt, I’ve laughed so much my tummy ached; I loved so much that I could burst. But most of all I have lived

Ebony with patron, Guy Ritchie

“Ebony’s brothers Cerwyn and Owen benefitted too, going on the sibling days out, which they really enjoyed.”

Ebony has Ataxia-Telangiectasia, AT, which is a rare and complex genetic disorder. It is often referred to as a ‘multi-system’ disorder because it affects a number of different areas of the body. Symptoms include increased difficulty in controlling and co-ordinating movements, less efficient immune system and increased risk of cancer.

At the moment Ebony’s mobility is decreasing and she is suffering other complications. However, she is looking at college courses to study next year and is determined to give the role of Julia’s House Young Ambassador her all; and she has a lot to give.

“I would really like to work

with the children at the hospice, children with cerebral palsy, autism or dyslexia. I am so proud to be an ambassador for Julia’s House and I really want to help other young people and show them what you can do as a disabled person if you are determined to make your own path.”

The AT Society has nominated Ebony for the Children In Need rickshaw challenge and in August Ebony spoke on Heart FM radio about accessibility in public places; she is a busy lady!

On Ebony’s last day at the hospice, we had a party for her but she was too emotional to speak about leaving our care for most of the day. But before going home, she made a moving speech to the assembled staff and Julia’s House Patron, Martin Clunes

who had been visiting with his dogs. She said:

“To all the staff and volunteers at Julia’s House,

WOW!!!!! I am actually going to be turning 18 and I am feeling very emotional.

I would like to thank each and every one of you for your tender love, care and support that you have given me over the years I have spent with you.

You have helped me in so many ways that if I were to list them all it would go on forever and ever. You have given me the opportunity to experience meeting lots of inspirational and lovely people who have given me the strength and courage to believe in myself and to have a go at everything. As you all say: “It’s okay not to be perfect, just stay true to yourself.”

I am so very thankful for all the hard work and time that is given by all of you and I am sure I can speak for all of the families on their behalf. Without you, our lives wouldn’t be the same.

I have cried so much my head has hurt, I’ve laughed so much my tummy ached; I loved so much that I could burst.

But most of all I have lived.I thank and love you all,

so on to the future and now another chapter begins.

PS: You haven’t seen the last of me…hahahahaha! Love Ebony xxxx”

Ebony’s story


A big hug from our patron, Martin Clunes

Ebony with carers, Ashley and Andrew

Who are our other Young Ambassadors?The Julia’s House Young

Ambassador Program provides a valuable link for young people who are leaving our service at 18 years of age and moving on to adult services. We offer the opportunity of becoming an ambassador to the young people who have used our service, which allows us to stay in touch.

Nurse Lynda Jones, who co-ordinates the programme, said of Ebony: “Over the years we have had the privilege seeing Ebony becoming the young woman she is today. Ebony often said that she’d like to remain with us past her 18th birthday and she was eager and excited to take up the challenge. We are fortunate to have such a willing and enthusiastic volunteer.”

We look forward to staying in touch with Ebony and her family.

We offer the opportunity of becoming an ambassador to the young people that have used our service


Young Ambassadors

Chloe Garrett Chloe, 19, is the sister of Matthew, who we supported at the end of his life, and she is passionate about helping Julia’s House. Here she is sharing a joke with Connor at our summer barbecue.

Poppy Johnson Poppy is 18 and has been part of our sibling group for many years. We care for her little sister, Kitty.

Alec Ross Alec was our first Young Ambassador and has always been a wonderful ambassador for us even before he became an official one.

14 Julia’s House Newsletterwww.juliashouse.org

This summer certainly was eventful thanks to our packed programme of activities for families – from polo and prosecco to quad-biking and barbecues.

Summer of fun!

summer of fun

Julia’s House parents have been getting up to some very adventurous antics as part of our Family Support Service’s social programme.

The Dads and Lads enjoyed a scramble around the countryside on quad bikes and our mums saddled up for a game of polo despite most having never been on horseback before! A group of mums also had their first ever sleepover at the beautiful Milton Abbey School.social programme

Bush crafts, life skills and all manner of shenanigans go on at the annual Sibling residential trip to Avon Tyrrell Country Park.

It’s a great chance for brothers and sisters of the children we care for to have some time out and let their hair down.

We organise two residential camps a year – and that’s on top of a diary already bursting with day trips.

sibling residential trip


summer of fun

Our annual Family Barbecue, has become a true favourite on the Julia’s House event calendar.

Despite threatening rain – and a sharp downpour at one point – there were lots of sunny smiles as everyone entered into the spirit of the occasion. Donkey rides, bouncy castles, crafts, crazy golf and a fabulous lunch were among the treats on offer. It was great to see parents and children relaxing and having fun.

Family barbecue


Tehya’s mum, Tammy, tells us what that support means to

their family: “Tehya absolutely adores Julia’s House. When she hears the voices of her nurses and carers she puts her arms out – she just loves snuggling up with them.”

We can only help families like Tehya’s because of the support of our local community, who donate and fundraise for us – and leave us gifts in their Wills.

Sisters Betty and Eileen Cruise had been regular supporters of Julia’s House. Both sisters enjoyed taking Sunday school

no matter the size, leaving a gift in your Will is really one of the simplest and best ways to help us support our families

Thank you for remembering us

classes at their local church, and supported many children’s causes throughout their lives. The sisters died within three years of each other, leaving us a gift in their Wills. A close friend said: “They were very charitable ladies – but Julia’s House was a particular favourite.”

Another donor, Maurice, has supported Julia’s House for more than 10 years. He knew about Julia Perks, the inspiration for Julia’s House, and her plans – “I got hooked on it”, said Maurice.

Maurice and his wife had no children of their own but were

legacies

Tehya with big sister Talee

foster parents for 18 years. After his wife died, Maurice decided to find a cause to support – and chose Julia’s House. He also decided to leave us a gift in his Will, using our Free Wills Service. He supports other charities, but Julia’s House is the one he feels most passionate about.

Our Free Wills Service is available at more than 30 Dorset and Wiltshire solicitors. For more information or for an informal, confidential chat, call Mark on 01202 644220 or email [email protected] or visit www.juliashouse.org

Sisters Betty and Eileen Cruise

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£10 could buy a child a bespoke play bag full of specialist toys to stimulate their senses

£60 could provide a nurse with two vital care kits to use at a child’s home in an emergency

£168 could pay for a hospice session for a child, giving exhausted parents a vital break

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please return this form to: Freepost Julia’s House, call our lottery Hotline on 01202 798618, visit www.juliashouse.org

Join our lottery

The promoter of Julia’s House Lottery is Faith Bayley. Julia’s House, Barclays House, 1 Wimborne Road, Poole, Dorset BH15 2BB. Registered with The Gambling Commission under the Gambling Act 2005. Registration No. 000-039939-N-319913-004. Charity No. 1067125.

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play your part in our care23 winners every week with

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After the success of last year’s Carols By

Candlelight at Wimborne Minster we’re getting ready to do it all again!

This year we will be holding concerts at Christchurch Priory in Dorset on 7th December and in the Chapel at Marlborough

College in Wiltshire on 8th December. As before, you can expect a blend of seasonal music, readings, mulled wine, mince pies and a truly magical atmosphere – all guaranteed to get you in the Christmas spirit. Tickets will be on sale shortly at www.juliashouse.org

Novelty jumper days, Nativities, school plays

and pantos – they’re all excellent opportunities to collect a few pennies for Julia’s House children this Christmas.

Our community team are here to help and can supply some lovely collection buckets and tins. We can also add your event to our Facebook and website listings. Call them on 01202 644220 or 01980 677105

oh come All Ye Faithful!

Tell us about your festive fundraisers


christmas 2016

Last year’s event at Wimborne Minster

It might have been hot outside this summer but

by August Julia’s House fundraising HQ was already in the throes of preparing for Christmas!

The arrival of our Christmas cards, calendars and diaries sparked everyone into action. They are already selling like hotcakes, particularly our ever-popular local scenes. This year our snowy Dorset landscapes, including Durdle Door and Hengistbury Head, have been joined by two familiar Wiltshire landmarks – Stonehenge and Caen Hill locks.

Cards are available from any Julia’s House charity shop, or online at juliashouse.org/shop.

Your local children’s hospice needs you! Could you help us this Christmas? With so many

christmas is coming!

exciting events and fundraising opportunities coming up we will need plenty of pairs of hands to pitch in. Extra volunteers are always extremely welcome at this very busy time of year – could you help with a bag pack,

man a stall or shake a bucket? Why not get together with some friends or family and make it a real team effort! Call 01202 644220 to volunteer in Dorset and 01980 677105 to volunteer in Wiltshire. Thank you!

meet the children

When you have finished reading this newsletter please share it with your family and friends

Saffey is a year old and has a rare condition affecting the nerve control in her face and neck. Below the neck she is a normal little girl who is now starting to crawl and walk with assistance, but she has difficulty supporting her head. She is unable to blink and requires careful monitoring of her eyes. Saffey is tube fed but is just starting to try small tastes of food. She is a very cheeky little girl who loves attention and really has fun when she comes to the hospice.

pass it on!

saffey

You might remember Ollie from our last newsletter when he was waiting for a liver transplant. He has had the operation and is doing really well. We wanted to share this fantastic photo of him, taken just one week after his surgery! He is now on medication to stop his body rejecting the new liver and Julia’s House are providing care at home for Ollie so his parents can catch up with life after a long stay in hospital.

ollie

Four-year-old Nikhil has a genetic condition which means he has little vision, is unable to sit up or support his body and unable to communicate. He has recently started attending hospice sessions where he loves lots of attention and being around people. Due to his severe visual impairment, time in the sensory room with the bright changing lights makes him giggle and kick his legs. He loves loud music, especially a bit of heavy rock and can play the drums with help. Everyone loves Nikhil’s amazing cheeky smile.

nikhil

newsletter autumn 2016 - julia's house€¦ · our wiltshire address suite 1, second floor,...

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