Shine Together 17

Dine for Shine An initiative to engage

restauranteurs –

page 7

Issue 17

A Golden Year ahead!Looking forward to

Shine’s Golden

Anniversary – page 3

Shine – Here For Life An overview of Shine’s

services and support

for you – pages 4-5

Your ‘One andOnly’ HomeHydrocephalus and

body image – page 6

Bronté-Lei and BennyBear are looking forwardto 2016 – Our GoldenAnniversary Year!

News

2 www.shinecharity.org.uk

Shine is a national charity for people affected by Spina Bifida andHydrocephalus, providing specialist advice, information, events, and peersupport to help families and individuals cope with the daily challenges thesecomplex conditions can bring.

Shine – Spina Bifida and Hydrocephalus –Information Networking Equality

Great news! Global, the media andentertainment group, has chosenShine as one of the charities tobenefit from their Make Some Noisecampaign, giving Shine theopportunity to talk to millions ofpeople! Global is home to muchloved commercial radio brands,including Capital, Capital Xtra,Heart, Radio X, Classic FM, LBC,Smooth, Smooth Extra and Gold.

The Global team have interviewedShine staff and members aroundthe country as part of the campaign,which runs until March 2016. Globalwill also be making a donationtowards our Benny & Bella BearClub for children with Spina Bifidaand Hydrocephalus.

Global will ‘MakeSome Noise’ for Shine!

Do You Want to beWHEELY Fit?

Make sure you check yourEmployment Support Allowance (ESA)!

If you receive income-related ESA(Employment and SupportAllowance), income-based jobseeker's allowance, pension creditguarantee, or universal credit, youautomatically qualify for help withcertain NHS charges includingprescriptions, sight tests andglasses, and free NHS dentaltreatment. However, if you receivecontributory ESA you MUSTcomplete a form annually – it won’thappen automatically for you, andyou could face penalties if you don’t.Contact your Shine Support andDevelopment Worker if you needadvice about this or any benefitclaim. Contact us on 01733 555988or email [email protected] to find your SDW.

Update on Benefits

Welcome...

As part of the ‘Right Wheelchair,Right Time, Right Now’ campaign, ofwhich Shine is a member, we arecalling all Shine members to petitionfor urgent improvements inwheelchair provision in the UK.

The campaign, launched by theWheelchair Leadership Alliance, iscalling for a better deal for the 1.2million wheelchair users in England,including many of Shine’s members.

Wheelchairs enable many people tolive happier, fuller lives. Yetinappropriate seating can causeback and shoulder injuries andserious risk of pressure sores, andmany wheelchair services are fallingshort, despite the efforts of localhealth teams.

Here are three important thingsyou can do to help to change this:• Sign up to the charter at

www.rightwheelchair.org.uk The more signatures they have,the bigger voice we have withcommissioners and politicians.

• Write to your MP and clinicalcommissioners who providewheelchairs – there aretemplates on the site to guideyou.

• Share your experiences [email protected] of where wheelchairservices have worked for youand when not. We can then usethese as a powerful tool to helpimprove these vital services forall people with Spina Bifida.

Right Wheelchair, Right Time, Right Now!

to the newly named Shine South, formerly Southampton District Spina Bifidaand Hydrocephalus Association, who have now joined up as part of Shine.

Will you help us to campaign for better wheelchair services?

From expectant parents to great-grandparents, we are

here for life.

If you use a wheelchair most or all ofthe time to get around, exercise canhelp to keep you in shape. Exercisehelps to boost circulation, keepmuscles strong and supple, andreduces the risk of pressure sores. Itcan be fun too! There is a lot out thereto help you start. Contactparasport.org.uk or your localauthority for details of a range sports totry. Fancy wheelchair basketball?Shine member, Rhys Walden, runs aclub in Northampton: contact him viaFacebook or on 07590 895991.For clubs near you trybritishwheelchairbasketball.co.uk.For wheelchair dancing or a fun fitnessclass, contact the Wheelchair DanceSport Association on 0300 111 30 45or wdsauk.co.uk or Wheely GoodFitness: wheelygoodfitness.com

C facebo ok.com/ShineUKCharity @SHINEUKCharity 3

News

Children across thecountry have beeneagerly awaiting thearrival of Bella. Well,the first Bella Bearbook is here!Beautifully illustrated byAlice Wood, Our NewBaby… Bella Bear,reflects on Bella’s earlydays. Bella has SpinaBifida and is the newspecial friend of BennyBear, who hasHydrocephalus.Published 1stDecember – priced£2.50 – a perfect gift. To order,phone us on 01733 555988 ordownload the pdf for only £1from our website

www.shinecharity.org.uk/bennyandbellabear(Look out for the new Benny &Bella Bear Club, with fun andactivities in the New Year too!)

Baby Bella is here!Together –here for youWelcome to Together.

You may spot thatthis new, lighterissue has fewerpages. There arelots of reasons:• It reduces the print

and postage cost – somore money can go to Shine’s work

• It uses less paper, saving trees, so it’smore friendly to the planet

• Many of you are already using otherways, such as Facebook, to shareyour news and stories. We aim tomake more of those ways too, as wellas paper

• The magazine will also be availableon our websitewww.shinecharity.org.uk/together

Here to help… Please do send any comments orenquiries to us:By post to:Together Shine, 42 ParkRoad, Peterborough PE1 2UQT: 01733 555988E: [email protected] F: Facebook.com/ShineUKCharityW: www.shinecharity.org.uk

Registered Charity No 249338

© Shine. No content can be re-published without the priorconsent of Shine, but Together ishere to be shared far and wide, so doshout away and share articles online!

Cover photo: Bronté-Lei FinnyPhoto by Angharad Edwards

Let us know if you would like a largeprint (text only) version of Together.

DISCLAIMER: Every effort has been made to ensure

that the information in this magazine is accurate at the

time of publishing. The information provided does not

constitute legal or professional advice, and opinions

expressed are not necessarily those of the publisher.

Please let us know

if any of your contactdetails have

changed

Looking forwardto a Golden Year!2016 will be a special year –our Golden Anniversary!The charity ASBAH, whichstarted in 1966 to helpfamilies with Spina Bifidaand Hydrocephalus hasgrown and developed intothe Shine we know today –now with 10,000 members!

In 2016 we will becelebrating all that hasbeen achieved and lookingforward to a great future –to reach and support evenmore Shine members. (Seepages 4-5 for an overviewof Shine services.)

Special Golden events in2016 will include the 50thAnniversary Service in

Peterborough Cathedral inApril, a Summer Specialevent, and a GoldenAnniversary Ball inNovember!

Look out for special eventsand ways to get involvednext year. We will sharedetails on the Shinewebsite, Facebook, emails,and in a special ‘Golden’issue of Together in April.

In July, the Spina Bifidaand Hydrocephalus: OurHeritage exhibition willlaunch in Peterborough –the first of its kind in theUK! It will be fully open tovisitors by the summer.

As we move towards a GoldenAnniversary year, it seems a perfecttime to reflect on the support thatShine has to offer, and our hopesfor the future. Here Shine’s ActingCEO, Kate Steele, explains...

I believe that Shine is special –even unique. We are the onlynational charity offering specialisthealth services to people affectedby Spina Bifida andHydrocephalus – the golden threador ‘SH’ of Shine.

Our health and education expertisegoes beyond that offered by nationalservices, and ranges from generalhealth advice to one-to-one supportfrom our Health and Developmentand Education Teams. Fromexpectant parents to great-grandparents, we are here for life.

Our deep understanding of ourmembers’ diverse needs allows usto tailor our support to the individual,and many say our help is life-changing.

Most of all, we work to ensure thatyou have the information and helpyou need, enjoy good peer support,and feel confident to try new thingsand look to the future.

Information – the ‘I’ in ShineWhether it’s learning how tomanage a shunt, toilet train a child,or ensure your own health andmental wellbeing, our information istailored to help you manage thedaily challenges that Spina Bifidaand Hydrocephalus can bring. Youcan find this on the Shine websitewww.shinecharity.org.uk. Overthe next year we will be refreshingand developing our information andwebsite, so that everything is evenmore useful and easy to find.

Networking – the ‘N’ in ShineA Reassuring Voice Shine’s Support and DevelopmentWorker (SDW) team are here tochat with you about the changesyou are going through as anindividual or family. They are skilledat supporting people through

change and loss, and enablingpeople to feel more positive abouttheir future even when the going is tough.

There are SDWs all over thecountry, but you don’t need to haveone living near you – they are therefor you at the end of a phone, email,on Facebook or at a Shine event(see back page).

‘It’s a privilege to work with Shinefamilies and individuals’ says SDW,Sharon. ‘They go through so much.It seems relentless, especially foryoung families with children whohave repeated surgery, ormembers facing changes in healthas they get older. We’re here tosmooth the way as much as wecan.’

SDW, Collette, adds: ‘On any daywe can be helping someone toclaim a vital benefit, think about thequestions they need to ask theirGP or neurologist, or respond toenquiries on Facebook. A big partof what we do is helping youngfamilies come to terms with a newdiagnosis, which can feel soisolating. Our events and Facebookgroups help to connect membersso they feel less alone. Sometimes,just knowing there is someone outthere who understands and caresmakes all the difference.’

Take Wendy, who’s older sonConnor has Hydrocephalus andyounger son Reece has epilepsy.Wendy is one of the most capablepeople you could meet, but sheadmits: ‘It feels as if you have tofight for everything! We havebecome experts in these conditions.What might be challenging for mostpeople is our ‘normal’. Lookingback, I wouldn’t change a thing. Ilove my boys to bits!’

Overview


Shine – Here For Life


Overview

Our team also work with schoolsso that teachers understand howSpina Bifida and Hydrocephalusaffect daily life and learning, andhow to support their youngstudents to reach their potentialand feel valued members of theirclasses.

Connecting you upShine also runs events around thecountry so that you can meet andshare together, whether it’s GreatMinds! – supporting mentalwellbeing, the Summer Rez foryoung people, family conferencesor fun days out. Over time, wewould love to have more events,funding permitting. See the backpage of this Together for eventsplanned up to Spring 2016.

Equality – the ‘E’ in ShineShine works hard, with you and onyour behalf, to ensure betterservices and care. Here are some ofthe campaigns we are working on.

Specialist services – workingwith partner organisations to

change the way health servicesare set up, so that you can meetall the experts you need in onego, at specialist centres. This willgive you a better service, savetime and stress, and be muchmore cost effective.

Better Continence Care –whether you use a toilet, catheteror stoma bag, going to the loo isan important and normal thing todo. But it can be morecomplicated for people with SpinaBifida and Hydrocephalus, andwithout the right support risksinfections and other problems.We are campaigning for betterservices, especially in Wales.

Better wheelchairs – you canfind more about this on page 2.

Prevention – working to preventneural tube defects (NTDs) bypromoting preparation for healthypregnancies and our Go Folic!message among pregnantwomen and women ofchildbearing age.

Shine’s work is enabled by thesupport of thousands of membersand partners, including Trusts andFoundations. Here are just some ofthe services that have developed orbeen able to continue, thanks to thisgreat partnership.

Giving Time to Shine – enablingmembers with Spina Bifida orHydrocephalus to volunteer atevents, as part of the Shine AdultMembers Council or Shine40Plusthanks to funding from Awards forAll England.

‘Thank you, Shine, for the lovely opportunity for the volunteers tomeet and get some training (even ifit was a tough subject at times), andfor the appointment in your fabulousHealth Hub – what an achievement!It is going to be such a blessing toso many!’ Sarah Killick-Sturges

Little Stars – thanks to fundingfrom Awards for All Wales, the SêrBach support meetings and fundays across Wales are bringingencouragement for many familieswith children under 10 who haveSpina Bifida or Hydrocephalus.

Shine’s Summer Rez broughtteenagers together for a great time,thanks to funding from the Boshier-Hinton Foundation and the JohnHorniman's Children's Trust.

Shine40Plus for adults with SpinaBifida and Hydrocephalus hasengaged more people acrossSouth/South East Wales, thanks tofunding from the MillenniumStadium Charitable Trust.

...and not forgetting our friends theFreemasons' Grand Charity for theircontinued support for Shine40Plus.

Thank you!

News and Views

‘When I was born I wasdiagnosed with Hydrocephalus.Over the 21 years since then, Ihave had 15 surgeries, pain,medical trauma and adiagnosis of post traumaticstress disorder. One aspect is

rarely spoken about: scars. I have scars from my headto my ankles. This has affected my confidence the most.

Growing up, I didn’t know how to handle people staringon the beach or in changing rooms.

I am a believer that, ‘It isn’t what happens to you thatdefines you, but what you make of what happens toyou’. Despite the many surgeries we ‘hydrowarriors’

undergo, your body is still there for you... It’s time totreat it with respect, as your one and only home.

As a body confidence coach, I teach people to embracetheir bodies. Scars are our badges of bravery andmementos of how strong and resilient we are.

Finally wearing a bikini was one of the hardest things Ihave done, but it was also one of the most liberating –to know that I was comfortable in my own body. Yes,there were still a few stares, but whether you havestretch marks, a C-section orscars through surgery, let’sstand up and be proud of our scars and what theyrepresent – our story.’

Your ‘One And Only’ Home...

It may feel strange to think aboutwhat will happen when you are nolonger around. But it is important toplan ahead, and more so if peopledepend on you. How would theymanage without you?

The best way is to plan now, bymaking a Will. A well written Will cansave your loved ones time, cost andanguish, and ensure they receive allthe money or property you wantthem to.

Without a Will the law, not you,decides how to distribute yourestate, and may not provide fully foryour family. (For instance, a spousemay not receive all your estate, and

under the current rules anunmarried partner receives nothing.)So making a Will is important.

After you have provided for yourfamily and friends you may wish toleave a gift to a favoured charity, tohelp them carry on their valuablework. Gifts left to charity are alsoexempt from inheritance tax.Seek a qualified Solicitor to help youmake your Will. (Sometimes youcan do this via their website, or bycompleting a questionnaire in thecomfort of your home.)

Gillian can be contacted [email protected] on 0370 1500 100.

Earlier this year, a Shine member’sfather shared about leaving alegacy to Shine. He talked abouthis daughter and how they hadbeen told she’d never walk, neverhave children, and would lead arestricted life because of her SpinaBifida. In fact, she has twochildren, goes horseriding and hasfulfilled a lifetime’s ambition toskydive over her home town.

He said: ‘It won’t be much, but wewanted to leave something toshow our appreciation. We hadwonderful support while mydaughter was growing up. It makessuch a difference knowing you’vegot someone in your corner.’

With sadness we report the death this year of Shinemember Helen Barnett, an original member of theLondon based ‘Blue Blobbers’ social group, and

Vanessa Wright, Consultant Paediatric Surgeon atQueen Elizabeth Hospital, Hackney (and later at theRoyal London) who treated many of our members.Both will be greatly missed.

A Legacy of Love

Shine member, Michelle Elman has Hydrocephalus. Here she shares her experience of one aspect rarely

talked about, and why body image matters…

Gillian Coverley, Wills & Trusts Partner at Irwin Mitchell Solicitors – one of Shine’s corporatepartners – shares why it helps to plan ahead.

Read more atbit.ly/1EXAyDb

or #scarrednotscared


Remembered with Fondness

Get Involved

Read apersonalmessage fromour Acting CEO, Kate Steele, onthe difference Shine makes topeople's lives and how you can

help by making a donation this Festive Season. (See the separate sheet with this issue of Together.)


Prizes will be awarded to the Winner and a

Runner Up in each of the above categories.

Tell Us A Winter’s Tale for ShineLaptops, tablets, pens and pencils at theready to write a short story!

The competition is open to everyone - Membersand Non-members alike. There are threecategories:Children up to 10 years – Maximum 500words. Entrance fee: £2.50

Teenagers 11–16 years – Maximum 500 words.Entrance fee: £2.50

Adults 16+ – Maximum 1,000 words. Entrance fee: £5.00(If you are 16, you can choose which category youprefer – dependent on the length of your tale).

Your story must mention the word SHINE

at least once. It can be funny, religious, a love story, a mystery – whatever you want to write about.

Closing date:

WEDNESDAY 6TH JANUARY 2016

You can submit your story and entry fee

electronically on our website

www.shinecharity.org.uk (just follow the

step-by-step guide on the homepage), or

post your entry and fee to: Shine, 42 Park

Road, Peterborough PE1 2UQ. Your entries

will be read anonymously to a judging panel,

made up of members of Shine in the City.

Winners will be notified and

announced on Facebook

and the Shine website.

Mr & Mrs F have just celebrated their Golden Wedding Anniversary and asked for donations, instead ofpresents, in memory of their daughter. They raised a fantastic total of over £1,000 for Shine! If you arecelebrating a special occasion in our Golden Anniversary Year please consider doing the same - thank you!

STOP PRESS!

Help Us to HelpOthers Like Harry ThisChristmas

Dine for Shine

If you have a relative or friend who owns arestaurant who could be interested in being

part of this new initiative to help Shine, please contact Shelley Green on 01733 421328

or [email protected]

We are asking restauranteurs to help Shine bydonating 50p to Shine whenever anyoneorders a specially selected dish, or by askingdiners if they would like to add £1 to their bill tohelp towards the work of Shine.

Spina Bifida and Hydrocephalus: Our HeritageThis event will be held in Peterborough, Summer 2016 – the first exhibition of its kind in the UK! For further information contact [email protected] or phone 01733 555988.

Shine Events Noticeboard

Normal Pressure Hydrocephalus

Spring Study Day in Peterborough,

April 2016.

Shine Great Craft Getaway, Devon,

3-4th June 2016. A residential event for

adult members to try various crafts and

get together with like-minded people.

£178.50 per person (15% single

supplement), covers full board and tuition.

Shine40Plus National Conference, Manchester, March2016. A one day event for Shinemembers with Spina Bifida andHydrocephalus aged 40 and over tomeet and share experiences andinformation. Registration £10.

Fancy a challenge in our GoldenAnniversary Year? Shine is looking forindividuals and teams (both wheelchairusers and non-wheelchair users) to takepart in walks, races, abseils and evenSanta Dashes across the country, toraise money for Shine.

Shine’s Golden Anniversary Events

Look out for Shine’s Golden Anniversary events around the country in 2016!

We will share details via the Shine website, Facebook, and in a special

‘Golden’ issue of Together in the Spring.

January - Just for January - give up something for Shine and ask your friends

and family to sponsor you

February - Love Desserts - for anyone who loves desserts! Invite your friends

to bring a pud to share, and charge them for the privilege!

March - Easter Recipes for Shine - we’d love to receive your favourite recipes

during February to create a special Easter booklet

April - Shine’s Golden Anniversary Service, Peterborough

Midsummer - Shine’s Golden Pedalfest - a summer special event for all

the family!

July - official launch of our Heritage Exhibition

November - Shine’s Golden Anniversary Ball

...and many more to come!

Make sure you let us know if YOU’RE planning an event in your area and we will

send you a fundraising pack! Contact us at [email protected]

Independent Futures, Coventry, 22-24th April 2016.A residential event for adultShine members and acarer/parent to identify stepsand skills that will help you tobe more independent.Includes cooking, managingmoney, setting goals andlooking after yourself. £180per member, includescarer/parent, full board.

Shine Health Home Delivery We now havenearly 400 adult members signed up to ourhome delivery service, which provides stoma and continenceproducts and prescription medication to your door. The serviceis also open to our younger members. Shine will be writing to all parents of our under 16 members to explain more about theservice, and how you can sign up if you wish. Please look out for the letter! For further information call us on 0800 023 8857 or via email at [email protected]

If you haven’t already, please

remember to approach your local

pub or social club to hold a quiz for

Shine too!

Shine runs events all over the country so that you can meet up with other members, have fun and share

and learn together. Below are details of some of the events coming up. For more information or to book

for our events, unless otherwise stated, please contact [email protected] or phone us

on 01733 555988. You can also find details on our web calendar at www.shinecharity.org.uk/events

Cadbury World Tour, Birmingham,

12th December 2015. For Shine

members aged 5-15 years (£3 children;

£4 parents/carers).

Documents

Shine Together 17