Together issue 10

Team Whitlock Bedroom Tax Shine Awards

Familiesthat Shine! Vote for yournew Board

Issue 10

Shine CEO, Jackie

Bland, and Bullens CEO,

Peter Bullen, recently

met to celebrate the

sponsorship of the new

WinnersWearYellow™

running vests. The

sponsorship deal will

enable the distinctive

Shine brand to grow,

whilst at the same time

promoting the unique

service offered by

Bullens which ensures

you receive all the

ostomy and pharmacy

products you require,

delivered straight to your

door. To find out more

call 0800 269327 and

mention you are a Shine

member. For every

Shine member that uses

Bullens, Shine receives a

5% donation from sales.

As part of their extraordinary number

of great fundraising events, Johnny

Vinson and his amazing group scaled

Snowdon earlier this month ... on

their mountain bikes! Johnny was

inspired to lead the challenge in

memory of William-Edward Bye, who

was the son of his close friends.

Welcome to Together

3

CONTENTS

P4 Shine Awards

P8 Support Groups

P12 Membership Update

P15 Housing Adaptation

P18 Gobi’s Gossip

P22 Go Folic!

P24 Shine NI News

P27 Competition Time!

Submission dates forSummer edition• Register of interest to submit:

16th September 2013• Final date for submissions:

1st October 2013• Publication date:

November 2013

Together Editor: Tom ScottDeputy Editor: Louise Tyler

All enquiries and comments to:Together Shine, 42 Park Road,Peterborough, PE1 2UQTelephone: 01733 555988Textphone service: 01733 [email protected] Charity No. 249338

Please let us know if you are happy toreceive future mailings by email as thissaves on postage and helps theenvironment.Email: [email protected]

Issue 10! That’s right, this isthe tenth copy of Togetherto be published and theninth edition that I have hadthe pleasure of working on.Thanks to everyone whohas contributed so far.

In this issue we have agreat variety of features,photos, health information, and benefits advice.We’re also asking you to send us yournominations for this year’s Shine awards, andthere are tips on how to get involved in the secondSpina Bifida and Hydrocephalus Awareness Weekthis October.

Our features focus on two families who havetaken their experience of Shine, and launched intodynamic fundraising to ensure that the support weoffer is always available and life-changing. Ourgrateful thanks go to both of them.

With your copy of Together we have included acopy of our brand new fundraising brochure,Getting started as a Shine fundraiser. Here atShine we owe everything we are able to do for ourmembers to our funders and fundraisers, most ofwhom have great fun as they help raise money. Ifyou feel could join these marvellous supporters insome way, this booklet is designed to help youtake simple steps towards fundraising for Shine,whilst at the same time enjoying yourself andraising the profile of the charity. If you need anymore information, or if you would like to sign up foran activity or event, please call Hannah on 01733421351, she’s always on hand to help and advise.

In the meantime, enjoy this packed edition ofTogether and please continue to send me yourideas, articles, and images, they really do make adifference to every reader that sees them.

Issue 10... Ourtenth copy!

Cover photo: Nikki Dalgarno and Ethan Dalgarno. Photo: Tom Scott

Shine Awards

4 www.shinecharity.org.uk/shineawards

The 2013 Shine Awards will be presented at

the Annual General Meeting on October 24th,

during Awareness Week, and the search for

nominations is on.

There are four award categories which are opento Shine member nominations. Please think hardabout anyone whose work or contribution merits anomination and follow the easy process below.

The categories are:• Shine Volunteer of the Year – Do you know

someone whose voluntary contribution isoutstanding? Someone who goes the extramile? Someone who willingly gives their freetime to really make a difference to others?

• Shine Young Achiever – This Award goes to ayoung person between the ages of 10 and 25who is a real achiever in one of more areas oftheir life

• Shine Professional 2013 – Is there aprofessional who you think has distinguishedthemselves in the world of spina bifida andhydrocephalus and deserves recognition fortheir work?

• The John andLucille VanGeest Award forOutstanding Contribution to the Shine

Community – this award goes to a person ofany age with spina bifida and/or hydrocephaluswho has helped to make our community – atlocal or national level – a better place.

In addition to these open Awards, a Shine panelof judges will make Awards for Fundraisers of theYear, Shine Ambassador of the Year and thecoveted Lifetime Contribution Award.

To nominate someone for an award please fill inthe following form, making sure that you completeall the details. If you prefer, you can go straight towww.shinecharity.org.uk/shineawards andcomplete the nomination on-line.

Whatever you do, please make sure you

nominate someone who really deserves to be

recognised. If your nominee is chosen for an

award you will receive an invitation to come

and see them receive their award.

Nomination Form – Shine Awards

Your name:

Your e-mail/telephone details:

The Award you want to nominate someone for:

The name of the person you wish to nominate:

Contact details for your nominee:

Please tell us why the person you have nominated deserves this award. Please give as much fact/detailas possible and write no more than 300 words. Please continue on a separate sheet if necessary.

Recognising the peoplewho Shine in 2013

C facebo ok.com/ShineUKCharity @SHINEUKCharity 5

David Nicholson

News

We are saddened to inform you thatDavid Nicholson, former member ofthe Your Voice committee and theBoard of Directors, passed away onthe 28th February 2013.

David was born with hydrocephalus and was amember and supporter of Shine. He was on theYour Voice committee from 1997-2010, as well asbeing a member of the Board of Directors from2000-2010.

David played a very active role in fundraising andwas part of the GMTV! Get up and Give appeal in1999, which raised £140,000. He frequentlyappeared in the Your Voice magazine, writingarticles and was often featuring in photographs.

David worked as a chartered accountant andbrought his invaluable skills to his role with Shine.

We are very grateful for the bequest David left toShine in his will; it will enable us to continueproviding our vital services.

Staff news

Our aim by 2016 is to remember the excellentwork of this charity by having a lasting memorial. How are we going to achieve this? We are goingto identify the most important landmark eventsthroughout the history of spina bifida andhydrocephalus, and celebrate this in differentways. We could have a time line within thePeterborough Head Office, an exhibition of itemsfrom the past to the present. We will need storiestold by members: written, recorded, or filmed.These need to be bite-sized, about specific issuesand not life stories. They need to be positive andmust reflect the remarkable achievements and, insome cases, the pitfalls experienced on thejourney.

Please contact Joan Pheasant if you wish to beinvolved and are willing to talk about yourexperiences. This could be something that hasinspired you, or something you have achieved

against all odds. You can give a short synopsis ofyour story via phone or email T: 0113 2556767 orE: [email protected].

We are also looking for historic pieces ofequipment and relevant objects of interest. Pleasesend a photo of anything you have that you wishto donate or loan to the exhibition.

At Shine, we have many archived publications,including an almost full set of the Link Magazinebut are missing the following copies - Issues 1, 10,14, 44, 112 and 118. It would be great if we couldfind these. We would be pleased to hear if youhave any other printed materials that we could use.

Do get in touch if you would like to be involved orhave any ideas on how we can develop ourHeritage Project to honour our 50 years ofsuccess.

ASBAH to Shine – Celebrating 50 years in 2016

It’s been a busy time with staff changes here atShine again. We have sadly said goodbye to JaneBishop who was part of the Grants and TrustsFundraising team, Christine Cousins, the SolentArea Shops Coordinator, and Denise Taylor whowas the Secretary for the London and SouthRegion. Finally, Ian Morley, our Collections Officer,who could often be tracked down somewhere inthe community disguised as Benny Bear has alsomoved on to pastures new (hide this from ouryounger readers if you don’t want to give away thesecret!). We wish every one of our leavers all thebest with their new ventures, and thank them fortheir many combined years of hard work and loyalservice.

Joanne Tailor has joined us as the new Londonand South Administrator at our new office inOrpington; Sam Lyons is our new FundraisingDevelopment Officer, and Cheyenne Graves andSiobhan McGowan are new additions to the Grantsand Trusts Fundraising department. Welcome oneand all – we look forward to working with you andwish you a long and happy career as part of theShine community!

Specialised Commissioning

Update on SpecialisedCommissioning

[email protected]

6 www.shinecharity.org.uk/specialisedcommissioning

A huge thank you and congratulations to Shine members who have managed to

get meetings with their MPs to discuss better healthcare.

As highlighted in previous issuesof Together, the NHS has decidedthat spina bifida is not a conditionthat needs specialist nationalcommissioning, whereas peoplewith spinal cord injury have aspecially designed resource.

Since the last report in Together, anational project group has beenformed to take this work forward.This group met for the first time atthe Chelsea and WestminsterHospital, home of the only adultmultidisciplinary clinic in England.

The group comprises:

Mr Andrew Baird: Consultant

in Adolescent &

Reconstructive Urology,

Aintree Hospital, Liverpool

Miss Maria Cartmill: Adult &

Paediatric Neurosurgeon,

Queen's Medical Centre,

Nottingham

Mr Frank Lee: Consultant

Urological Surgeon, St

George's Hospital, London

Dr Richard Morgan: Clinical

Director, Medicine and A&E

Directorate, Chelsea &

Westminster Hospital

Foundation Trust, London

David Ash: Urology Nurse,

Princess Royal Spinal Injuries

Centre, Northern General

Hospital, Sheffield

Jackie Bland: Shine CEO

Patricia Adley: Solicitor and

Member of Shine, London

Liz Potts: Shine Support &

Development Worker (North

Staffordshire) and Member

of Shine

Heather Doughty: Member of

Shine and Shine Adult

Members Council

(Nottingham)

Gill Yaz: Shine Health &

Development Manager

The group resolved that thecurrent situation facing adults withspina bifida is unacceptable; weshould pursue a recognisedhealthcare pathway for adultswith spina bifida and address theinequality between patients withspina bifida and those with anacquired spinal injury.

A template letter has beenproduced for Shine members(and concerned parents) to sendto their MPs. You can find thisletter at www.shinecharity.org.uk/specialisedcommissioning or call01733 421356 for a copy.

A number of members havealready used the letter or writtento their MPs independently. So farseveral have agreed to meet todiscuss the issue and one MPhas secured a meeting with theSecretary of State for Health. OneMP received a letter from theNHS CEO, Sir David Nicholson,who explained that while the NHS

was reviewing services whichmight be specially commissioned,expert clinical advisers decided toadvise against spina bifida beinga condition identified as needingspecialised commissioning. Thisis new information; up to this pointShine had understood that spinabifida had not been considered.According to the NHS now, spinabifida was actually considered byexperts, and their view was that itwas not a ‘special case’ despitespinal cord injury being included.

A letter has now been sent fromShine to the NHS CEO asking forsome information about how thisdecision was made, who theexpert advisers were, and whyShine was not aware that thisissue was being considered.

This is a very difficult time to betrying to get the NHS to change,so the efforts of the Shine

community are really needed ifwe are going to bring about abetter situation than we currentlyhave. So please:

1. Talk to people about this issue;2. Write to your MP;3. Let us know your experiences

of healthcare – where it hasn’tworked so well, where it hasworked and what wouldimprove things for you as anadult with spina bifida;

4. Let us know what you thinkabout this issue by emailingLyn Rylance.

E:

Benefits update

www.shinecharity.org.uk/specialisedcommissioning 7

Bedroom taxNew rules mean that if you are asocial tenant, you won't be ableto get full housing benefit if yourhome is deemed to have ‘sparebedrooms’. This is being calledthe ‘bedroom tax’. Letters fromthe council may call it ‘under-occupancy rules' or 'size limitrules’.

How many bedrooms can you

claim housing benefit for?

New rules mean that you canonly claim housing benefit for:• one bedroom for a couple• one bedroom for a person

aged 16 or over• one bedroom for two children

aged under 16 of the samesex

• one bedroom for two childrenaged under 10 (boys and girlsare expected to share a room)

• one bedroom for any otherchild

• one extra bedroom if you oryour partner needs anovernight carer to stay.

Who will be most affected by

the ‘bedroom tax’ rules?

63% of those affected will bedisabled, and around 180,000will be Disability LivingAllowance claimants. Thoseaffected could lose between14% and 25% of their housingbenefit support.You can’t claim housing benefitfor ‘extra’ rooms for:• children visiting a divorced or

separated parent• couples who use separate

bedrooms because of illnessor disability

• rooms used by disabled

adults to store medicalequipment.

Who will be least affected by

the bedroom tax?

The ‘bedroom tax’ won't affectyou if you (or your partner) havereached eligibility for PensionCredit age. On 1 April 2013,when the bedroom tax starts,you will have reached this age ifyou are aged 61 years and 5months (male or female).

Successful Human Rights

challenge – recent

developments

There has been for some time asimilar ‘bedroom tax’ ruleoperating in the private sector.

However, last year there was achallenge against thegovernment based on humanrights, arguing that these rulesunlawfully discriminated againstdisabled people. One prominentcase involved a family with twodisabled children with verydifferent care needs (one ofwhom has spina bifida).

As a result, a Court of Appealjudgment says that localauthorities should now use theirdiscretion to allow an extrabedroom for children who areunable to share because of theirsevere disabilities.

However, there was no ruling onthe issues surrounding adaptedhomes and this means thatmany disabled adults may stillface cuts to their housingbenefit.

If you are affected, you may

be entitled to a discretionary

housing payment (DHP).

Housing/council tax benefitdepartments have funds to givediscretionary housing payments(DHPs) to people who qualify forhousing or council tax benefit,but are having trouble payingtheir rent or council tax. Thecouncil decides who should begiven the payments. However,when the money for the yearruns out, no more payments canbe made.

You usually have to fill in aspecial claim form for adiscretionary housing payment(DHP). Contact your localcouncil housing/council taxbenefit department for furtherinformation.

If you want more detailedinformation about the changesfrom DLA to PIP, DisabilityRights UK has produced acomprehensive guide to helpyou through the claimingprocess. The guide coversinformation on:• PIP rules• Filling out claim forms, and

much more including what todo if you’re not happy withyour decision.

You can download a copy fromthe Disability Rights UK website,or a photocopied version is £4including P+P. To order a copy,call Disability Rights UK on 0207250 3222.

Talking with others who have‘been there’ already, or whoday-to-day share the samehighs and lows, is often morevaluable than anything else.

This is why Shine has made itsSupport Groups a priority, withover 30 groups alreadyoperating throughout England,Wales and Northern Ireland.

The latest group to be formedmet in Nottingham for the firsttime in early July. Sevenfamilies, including two Mums,two grandmothers, two Dadsand a couple expecting theirfirst baby, met at Nottingham’sBeechdale Leisure Centre. As well as social time, thechildren were able to enjoy aball pool, soft play area, andsensory room.

Shine’s Regional Manager,David Isom, and Support andDevelopment Worker, ColletteTorrence, were on hand in casefamilies had any questions(and there were many!) and tojoin in the discussions.It was a measure of how mucha Support Group was needed,that families travelled fromLeicester, Loughborough andDerbyshire, to join this firstmeeting, and all resolved thatthey wanted to meet again.

Discussions ranged fromexperiences of pregnancy andbirth in support of the couple 26

weeks pregnant with their firstchild, to difficulties in gettingholiday insurance for childrenwith hydrocephalus (Shine staffreminded the group that Shine

has a list of ‘hydrocephalus-friendly’ insurers). Almosteveryone in the group spokepassionately about thepressure they felt from medicalstaff to terminate theirpregnancy when a neural tubedefect was diagnosed.

This new East MidlandsSupport Group is just one

example of the ways in whichthe Shine community can bestrengthened through SupportGroups. In other areas, groupsof people with more unusualconditions meet. There is anIntercranial HypertensionGroup that meets in theMidlands, for example, and inother areas groups of adultsmeet to enjoy social activitiestogether.

One such example of this is the Blue Blobbers, who meetregularly in the London area todevelop friendships and visitplaces of interest or tryactivities such as bowling. This group is supported byvolunteers, who help groupmembers that cannot travelalone to get to the meetingvenue.

The group includes people witha range of abilities witheveryone welcome, and groupmembers supporting eachother to overcome anychallenges that might affecttheir taking part. The BlueBlobbers are interested inmeeting up with other groupswithin the UK (so please get intouch with the Shine office ifyou are interested in this) andalso hope to eventually goaway together for a few days.

Of course not all SupportGroups actually meet up.Through social media such as

Support groups

8 www.shinecharity.org/events

Get together!There is nothing quite like getting together with people who share your life experiences,

especially when those life experiences can make you feel a bit isolated at times.

The group includes people

with a range of abilities

with everyone welcome,

and group members

supporting each other to

overcome any challenges

that might affect their

taking part.

Support groups

w youtube.com/ShineUKCharity 9

Facebook, other groups enjoycommunicating with each otherfrom the comfort of their ownhomes. Shine50plus group is athriving online community ofindividuals with both spinabifida and hydrocephalus whodiscuss a range of issues andexperiences.

For the younger age group,there is the new ‘This is Me’group for 11-14 year olds. Thisgroup has discovered that‘finding’ each other via theirclosed Facebook page has

been of great interest andreassurance. Many of the ‘Thisis Me’ group speak of feelingisolated in their ownenvironments, not knowinganyone else with the disabilityand of experiencing hugechallenges in their school lives.Just talking to other youngpeople who are going throughsimilar experiences has been agreat boost to their confidence.www.thisisme.org.uk

If you would like to know ifthere is a Shine support group

near you, or would like to joinone of the groups mentionedhere, please [email protected] or callT: 01733 555988

Likewise, if you are interestedin setting up your own Shine

Support Group we can put youin contact with your nearestRegional Office who will behappy to help. Small-start upgrants may be available to helpyou on your way.

Many of the ‘This is Me’ group speak of feeling isolated intheir own environments, not knowing anyone else with thedisability and of experiencing huge challenges in theirschool lives.

Feature

10 C facebo ok.com/ShineUKCharity @SHINEUKCharity

Our challenges havemade us stronger...

Nikki and Luke are parents toboys Finlay, 4, and Ethan, whohas just turned 1 and has spinabifida and hydrocephalus.

It was at their 16-week scanthat the couple were told thatNikki was carrying twins, andnot only this, but that the twinswere sharing a placenta.

They named the unborn twinsElliot and Ethan. At 23 weeks,Nikki underwent laser surgeryto split the placenta. Afterwardsit was presumed that Elliot hadsurvived, but that Ethan hadnot made it through theoperation.

However, in what would be thefirst of many extraordinarydevelopments, it emerged thatit was in fact Ethan, the babywith spina bifida andhydrocephalus, who hadsurvived. Shortly after this,Nikki’s waters broke and itlooked to everyone involvedthat Ethan too would lose hisfight for life.

However, as Nikki recalls:‘Ethan didn’t come out! Hestayed there until 36 weeks, 12 weeks after my waters hadbroken!’

At just 12 hours old Ethan wastaken away for a back closure

operation and after a week heunderwent an ETV procedureto drain the excess fluid awayfrom his brain. This would formthe beginning of a journeythrough many procedures,including Ethan’s first shunt attwo weeks old, a shunt revisionat five weeks, and anotherrevision at six months, bothdue to blockages.

Essential support

In addition to hishydrocephalus, Ethan was alsoundergoing various otheroperations including turning hisfeet to make them straight andovercoming swallowing issuesrelated to his Chiarimalformation.

Far from being a child troubledby his early experiences, Nikkitells of Ethan rising above his

physical situation and charmingthe staff at Liverpool’s AlderHey Hospital: ‘You’d find Ethanflirting with the nurses on theward at their station; everyoneis drawn to his bright eyes andcharming ways!’

The delight that Ethan brings issomething to which ShineSupport and DevelopmentWorker, Liz Potts, can testify, ‘Itis always great to meet withEthan and his family, they are agreat example of a family notjust overcoming the odds, butgoing beyond this and usingtheir experience to benefitothers.’

Nikki is equally ascomplementary of the supportshe receives from Liz: ‘we reallywould have been lost withouther, Liz is not just a Shineworker, she is our friend andshe is now helping me tosupport others facing similarsituations.’

As well as the support from thehospital and Shine, Nikki saysEthan and Finlay’s grandparentshave been invaluable. ‘I don’tknow where we’d be withoutthem, they have been with usevery step of the way to makesure that we can get to everyhospital appointment and tohelp us through the tough times, especially those we had

At Shine we hear many extraordinary stories about our members. These stories inspire us and

make us ever more determined to provide the best services we can. We also know that

sharing some of these stories inspires and encourages many others within the Shine

community. Tom Scott went to hear one such story from Nikki and Luke Dalgarno

Liz is not just aShine worker,she is our friend and she is now helpingme to supportothers facingsimilarsituations!

11

Feature

in the beginning when Ethanwas very young.’

However, it is Finlay, Ethan’sfour-year-old brother, whomNikki describes as ‘amazing, socaring and gentle.’ Finlay iskeen for others to understandwhat his brother is goingthrough and at school heexplains to others what spina.

Giving back

Not content with overcomingsome of life’s most difficultchallenges, the Dalgarno familyis also looking to give back.Enter husband and father,Luke, who works for the DaviesManagement Group in Stoke.

Like many companies, DaviesManagement Group offer theirstaff the opportunity tonominate a charity and thenhold a staff vote to select a

Charity of the Year. Nikkidescribes the feeling of Shinebeing chosen as‘overwhelming’. ‘I don’t evenwork there but they are so, sosupportive.’

The fundraising by DaviesManagement Group is a greatexample of how communitiesunite to ensure that supportfrom Shine is always available.Since starting in April this yearLuke’s employers have teamedtogether to raise over £1000 forShine, a welcome and valuablestart to our partnershiptogether.

Powerful things happen whenfamilies with experience ofspina bifida and hydrocephalusstart to help others, and Nikki isnow working with Liz Potts tomake sure that parents ofnewborn babies with the

conditions get as much soundadvice as soon as possible.Nikki knows what it is like tostruggle at the beginning andwants to make sure that otherfamilies get information andsupport as soon as they can.‘The information you’re givenwhen you’re pregnant is a joke.It’s so hard at the beginningand we want to be a part ofanything we can to help others.’

The future

Nikki reflects on some adviceshe was once given when sheand Luke found out that Ethanwould have spina bifida andhydrocephalus. ‘We were toldthat the challenges of parentingEthan would make stronger orweaker, it’s been hard, but ithas definitely made usstronger – if we can take onspina bifida and hydrocephalus,we can take on anything!’

Membership


Membership numbers booming!

But who are these new people? At the last meetingof Shine’s Adult Members Council, Shine staffwere asked find out more about the people whochoose to join us.

This is what we found:

We welcomed 1,115 disabled members. Noteveryone told us their age, but we know therewere 632 new child members and 524 new adultmembers.

By far the most common disability among newmembers was hydrocephalus alone, with 178 newadult members and a significant 362 new childmembers. For people with spina bifida withouthydrocephalus, the numbers were 74 adults and54 children, whilst there were 113 new adultmembers with SB/H and 99 children.

Among the rarer conditions we welcomed 20 newadults and 5 children with IntracranialHypertension, while 26 adults joined who haveNormal Pressure Hydrocephalus.

The largest number of new members came from theNorth and West Midlands areas with 407 newmembers recorded. In Wales 117 new membersjoined, and in Northern Ireland, a total of 128.

So, a huge variety of members from far and wide.All coming with different needs and different thingsto offer the Shine community. This variety tells us

0

100

200

300

400

500

600

700

Shine has welcomed 1,488 new members in the past two years, which is great news

because every new member strengthens our community.

� Children 632

� Adults 524

� Others 331

A B C

Children by Adult by Others

Disability Disability (professionals,

family members)

� Hydrocephalus 362 178 30� Spina Bifida 58 74 23� SBH 99 113 9� SBO 20 37 7� SBO with H 1 1� IH 5 20 13� NPH 26 3� Dandy Walker Cyst 2 1� Encephalocele 1� No Condition 140 73 246A B C

Children and adults by disability

that we have to work hard to make sure all thedifferent sections of our community are beingconsidered and, in particular, we have torecognise what a big proportion of ourmembership is going to be people withhydrocephalus alone.

Our Adult Members Council also expressedconcern that there might be many people andfamilies whose lives are affected by SB/H, whohave not heard of Shine, or who have not had theopportunity to join. They asked that we increaseour efforts to reach these people and we haveresolved to do this.

Together readers can help with this, and it willbenefit us all if our community grows, as well asoffering more support to new people joining us. Ifyou know of people with SB/H who are not Shine

members, please encourage them to join – it’scompletely free. If you are a Shine Facebook user,but haven’t yet joined up, please do so now! And ifyou can think of places or networks where Shine

membership can be advertised, then please do letus know – all suggestions welcome.

How to join Shine: Phone Maureen Jobson on T: 01733 555988 E: [email protected]

What membership entitles you to:• Free copy of Together magazine four times a

year – mail or on-line• Free health/education advice• Services of your local Support and

Development Worker• Membership of Shine networks/groups• Chance to vote for Shine’s Adult Members • Council/Board and AGM resolutions• Opportunity to be involved in Shine governing

and advisory bodies• Lively social media groups.

Membership


Great minds!Promoting mental wellbeing

A lifestyle event for adult members with

hydrocephalus

ShineT E

Friday 11th October 2013

depression?

anxiety and low mood! Come along and join us!

Time: 10am-4pm

To include: presentation, discussion and opportunities for meeting others.

There will be a charge of £10.00 per person to include refreshments and a buffet lunch. The event is aimed at members over 16. No children, please.

Shine

Closing date for applications 20th Sept 2013

Places are limited so please register your interest as soon as

possible

Benefits update

Universal Credit will beintroduced. It is a new singlebenefit which will graduallyreplace most 'means-testedbenefits' (and all tax credits)paid to working-age people.The new benefit, Universal

Credit, starts in theManchester and Cheshireareas and will gradually berolled out nationally fromOctober 2013.

However, OT departments maybe based within the NHS oryour local council dependingon the area you live in. Forfurther information about howto get it touch with them, askyour GP, consultant or socialworker. Alternatively, GoogleOccupational Therapy and yourarea.

A new localised Council Tax

Reduction scheme comes intoforce. For most of the UK thiswill mean a real reduction insupport available for counciltax. However, for the initialperiod 2013-14, most people inWales will have more or lessthe same level of help as theydid under the former CouncilTax Benefit.

The Housing Benefit ‘bedroom

tax’ for social housing tenantshas been introduced. HousingBenefit will be reduced forworking-age people who have

an extra bedroom under thenew rules.

The Benefit Cap starts in fourLondon local authority areasand will be rolled out nationally

between 15th July and 30thSeptember 2013. Claimants ofworking-age will have amaximum limit on the totalamount of benefit they can get.After a certain point, claimantswill have their housing benefit(later housing credit as part ofUniversal Credit) reduced.

Personal Independence

Payment (PIP) is a new'working-age' benefit for peoplewho are very ill or disabled,and who have significantdifficulties with mobility or needhelp with their day-to-day living.It will eventually replace allworking-age claims forDisability Living Allowance.

For new applications, PIP wasrolled out nationally from June

2013. Those on DLA willgradually be reassessed underthe new criteria for PIP fromOctober 2013. Lifetime awardclaimants of DLA will not beexpected to be reassessed until 2015.

The ‘discretionary’ parts of theSocial Fund will also beabolished, includingCommunity Care grants andCrisis Loans. In the devolvedparts of the UK, there will benew ‘discretionary’ funds whichwill provide grants and otherhelp – but these will be limited;elsewhere in England there willbe local schemes operated bylocal authorities. The‘discretionary’ funds focus helpon those who are mostseriously vulnerable or in crisis.Budgeting loans will graduallybe replaced by a similar‘budgeting advances’ systemas claimants move ontoUniversal Credit.

What to do now?

If you are concerned and wouldlike to know how thesechanges may affect you or yourfamily, please contact our teamof Support and DevelopmentWorkers through Shine’s First Point of Contact on 01733 555988.

Times they are a-changin’– what’s happening with welfare in your area in 2013There are a number of changes which took effect from April 2013 onwards.

For a quick guide to these changes, read on…

Claimants of working-age

will have a maximum limit

on the total amount of

benefit they can get. After

a certain point, claimants

will have their housing

benefit (later housing

credit as part of Universal

Credit) reduced.

14 www.shinecharity.org.uk/how-we-help/welfarereforms


Housing adaptations

Housing Adaptations – some guidelinesby Emma Enfield, Shine Occupational Therapist

Everybody should have a CommunityOccupational Therapist (OT) who is responsiblefor community assessments regarding aids andadaptations that you might need at home. MostOT departments will accept self-referrals, so youdon’t need to go via your GP. However, OTdepartments may be based within the NHS oryour local council depending on the area you livein. For further information about how to get it touchwith them, ask your GP, consultant or socialworker. Alternatively, Google OccupationalTherapy and your area.

There is usually a long wait for an assessment.Remember to tell them if you think you need to beseen urgently. They will work to priority guidelineswhich you can ask to see but, ultimately, youmight have to wait.

When the OT visits they follow quite strictguidelines on what they can and can’t recommendfor you. You are entitled to see a copy of theirguidelines and the priorities they use to make theirdecisions. It is usual for them to have to carry outan assessment with equipment before theysuggest any adaptations to your house. Anexample of this might be that they will give youbathing equipment to try before they will

recommend a graded floor shower. If you can’tmanage and don’t think it will meet your long-termneeds, tell them why.

If you both agree that adaptations are the answer,then there are a few routes that might have to befollowed. Some OT departments insist the OTwrites a report which is then presented at an OTadaptations panel. They will either approve it, orwrite to let you know it hasn’t been successful. Ifthis happens and you don’t agree, ask them tospeak to you about this, or they might close yourcase down.

If it’s agreed, then the OT will send the report withwhat you need to either the housing association tocomplete the works, your landlord, or the localcouncil. Sometimes they just agree to do theworks as soon as they get the report. But oftenyou need to apply for a grant. For more detail onapplying for a grant, please see:www.shinecharity.org.uk.

Although it’s all quite long-winded, be assured thatthere are literally thousands of housingadaptations completed each year so they DOhappen. If you need any further advice, pleaseemail: E: [email protected].

Whether you own your home, rent it from the council, housing association, or private landlord,

you are entitled to have an assessment of your needs.

16 C facebo ok.com/active4shine

Feature

When we choose the fivesuccessful applicants we haveto consider their connection tothe charity, their experience asfundraisers, and their plans forraising money for Shine bycompleting the world’s mostfamous marathon.

Taking her inspiration from herdaughter Lucy-Rose, who hasboth spina bifida andhydrocephalus, HannahWhitlock ran the LondonMarathon for Shine last Apriland raised an amazing £4800!

Not content with breaking theminimum sponsorship by£2300, Hannah then recruitedher brother, Aaron, to apply forthe 2014 race to ensure thatnext April Team Whitlock willgenerate even more donationsto Shine.

The duo convinced the team atShine that they could repeatHannah’s success through acombination of their energyand endless ideas for creatingawareness about Shine andinspiring others to sponsor theirfundraising ventures.

Hannah spoke to Togetherabout Lucy-Rose and what it isthat motivates her to run mileafter mile for Shine.

Hannah discovered at her 20-week scan that she was havinga baby with spina bifida andhydrocephalus. Though shewas offered a termination, anddespite not being fully awareabout what a life with spinabifida and hydrocephaluswould be like for her daughter,Hannah took the decision tocontinue the pregnancy.

And it has been the bestdecision she has ever made.

Lucy-Rose has fought throughsurgery and multiple shuntrevisions to become anincredibly bright, sweet younggirl. Hannah is clearly veryproud and, though thechallenges are pretty constant,she says, ‘Lucy-Rose isamazing, she’s just like othergirls her age, she loves hercats, playing the piano,cooking, and she’s a hugeTaylor Swift fan!

Fundraising – it’s about havingyour WHITS about you!Introducing Team Whitlock

Every year the most popular charity-place running race applied for here at Shine is the Virgin

Active London Marathon.

Lucy-Rose is amazing, she’s just likeother girls her age, she loves her cats,playing the piano, cooking, and she’s ahuge Taylor Swift fan!

Feature


Lucy Rose continues to have issuesrelating to her bladder and bowel, notthat you’d know it, she just gets on withlife and never makes a fuss!’

Lucy-Rose is keen to speak openly aboutwhat life is like as a 9 year-old with spinabifida and hydrocephalus, and this hasled to her bravely standing before herpeers at primary school and explainingwhat it means to have to managecontinence and look after her shunt.

It is so that children like Lucy-Rose canbe supported with everything they need,that Hannah and Aaron are embarking ona year of fundraising for Shine. We wishthem every success and can’t wait to seethem cross the finish-line next April!

Words and photos by Tom Scott

Gobi’s Gossip


In my last set of ramblings, Imentioned my “Big Op” waslooming. With Togetherpublication timescales as theyare and at the time writing this,I’ve now had my MitrofanoffRevision. I’m still recoveringfrom the surgery and am nowon the road to recovery. Butbefore I go into more detailabout my experience inhospital, let me start byupdating you with eventsleading up to my admission.

Due to badminton tournamentsand planning for Rise andShine, the months leading upto surgery were unbelievablybusy. Preparations were madeto ensure things wereorganised and in place forhandover to the rest of theShine team before I was out of

action. This didn’t just apply formy Shine duties, but also in mypersonal life where I had tomake sure my own admin,

banking and other paperworkwere all in order before goingon sick leave.

Doing all of this was a hugetask, but it was a necessity inensuring that I had fewer things

to worry about during myrecovery. It’s fair to say thingswere non-stop, but it was greatto get my teeth into Rise andShine, and really focus myattention on finalisingexhibitors, and also securing aguest speaker, formerInternational Wheelchair Tennisplayer, Jayant Mistry.

Rise and Shine has passed bynow, but I know that many ofyou attended, and had anenjoyable and worthwhileexperience at StokeMandeville.

With a hectic schedule and lotsof travelling to Shine eventsand Badminton tournaments, itwas great to take some timeout for Shine duties of a localnature, just days before I wentfor my operation.

I met up with Shine members,the Sivashankar family, wholive in my home town ofStevenage. They very kindlymade a donation to Shine, andit was great to go to their homeand meet with them,particularly 7 year oldSubathran, who hashydrocephalus and cerebralpalsy. Subathran, who isalways full of smiles, posedwith a Shine T-Shirt, along withBenny Bear, in their speciallyadapted home. His parents areproud and pleased with hishappy nature, despite havingvarious difficulties with his

Gobi’s GossipHello everyone! Time has whizzed past once again, and we find ourselves already in the latter

stages of summer.

Subathran, who isalways full ofsmiles, posedwith a Shine T-Shirt, along withBenny Bear, intheir speciallyadapted home.

condition. It was a lovelyafternoon and an education forme too with regards to theextent of adaptations that canbe made to a family home toaccommodate a physicaldisability from a young age.

With the lead up to myoperation being so busy, attimes, it was all a bit of a blur,but I very quickly found myselfsitting at home the night beforemy surgery, looking ahead atwhat I’d be facing. Having beenunder the knife on numerousoccasions, I tried my best toensure that I was physicallyand mentally ready for what layahead. However, it was still anunpleasant feeling to be waitingfor the inevitable.

Regardless of my preparation,the surgery was out of myhands and was somewhatdifficult for my consultant.Surgery took almost 6 hoursbefore I finally got sent tointensive care.

I felt very sore and groggy, butI could now concentrate ongetting the recovery phaseunderway. Unfortunately, myrecovery plans didn’t quitehappen in the timescale I was

hoping for. From themoment I came outof theatre I had anumber of setbacksthat proved to beuncomfortable, anddelayed theprogress of myrecovery. It startedwith having anincorrectlyinserted NasalGastric tube (which had to beremoved and then re-insertedin ICU), catheters that didn’tdrain, my bowels and stomachgoing into shock, upsetstomach for 10 days, severedehydration (with somedelirium), thrush in my mouth(caused by antibiotics anddehydration), and finally acavity appearing in my woundneeding daily dressing, evenwhen I came home after my 3week stay. Needless to say, anunpleasant time in hospital, butI should point out, it wasdefinitely just one of thosethings and not caused bynegligence, or poor healthcare.Surgery, in the main is ‘routine’and most patients have little orno issues in their recovery. I’vebeen one of those patients inthe past, however, this time it wasn’t to be.

It is never agreat thing to experience andthere really is no rhyme orreason why it happens. It canhappen to the best of us, and isone of life’s hurdles that haveto be overcome. However,keeping yourself as fit aspossible can help withrecovery, and also allow yourbody to handle complicationsfar better too.

At this moment, I still have along way to go to complete myrecovery, but I very much hopethat by the time you’re readingthis, I’m back to my Shine

duties and meeting all youmembers once again at variousevents and visits around thecountry.

I hope that everyone is havinga great Summer and I lookforward to being back with youin the next edition as I headinto my 3rd Year asMembership DevelopmentOfficer!

Gobi’s Gossip


From the moment I came out of theatreI had a number of setbacks that provedto be uncomfortable, and delayed theprogress of my recovery.

A future Shine superstar…

Think about it...

Many people with hydrocephalus, or open spinabifida, have differences in the way their brainprocesses information coming at them from theenvironment, and even their own internalthoughts, because of the way their braindeveloped from the beginning.

As the brain is developing in the womb, it’simportant that certain chemicals can flow freelywithin the cerebro spinal fluid (CSF). This isbecause these chemicals help the brain cells toorganise into tidy layers. If the CSF is trapped,for example by a blockage, or because it isflowing in the wrong direction (which happens inspina bifida) then the layers of cells in the braincan be thinner, and untidily organised. When thebrain is formed like this, rather than in the usualway, then it can affect the way it operates, whichis why people with SB/H cannot always do all theusual things in the same way as other people.

The front part of the brain, which helps usorganise ourselves, is often affected. This part ofthe brain also helps us check our behaviour orour performance against what we set out to door what others expect us to do. The front of thebrain also helps us remember information longenough to use it, to plan into the future and toimagine what is going to happen.

When this is affected, you may find it difficult toimagine things being different to how they are now. You might find your own view of your

strengths and weaknesses very different to thatof your family and friends; for example, you mayfind yourself disagreeing with family on applyingfor jobs or courses you think will be right foryou. Some research by the University ofWestminster suggests that people withhydrocephalus may not always be as aware of the effects of their condition, as people close to them.

The way that spina bifida and/or hydrocephalus, can affect how you think and act can make a

much bigger difference to the quality of your life than your physical disabilities. Gill Yaz, Health

Development Manager explains...

When the brain is formed like this, rather

than in the usual way, then it can affect the

way it operates which is why people with

SB/H cannot always do all the usual things

in the same way as other people.

Health

20 C facebook.com/Shine.Gill.Yaz

For parents of children withspina bifida or hydrocephalus,it is advisable to start yourchild off from a young age by helping them to organisetheir belongings.

ProfessorBaystoncomments onthe accountof a shuntinfectionwritten byJames

Weavin in the last issueof Together.

“James’ problem was apseudocyst that formedat the lower end of hisventriculoperitoneal(VP) shunt, causing ashunt blockage. Suchcysts are usually due toinfection, as in thiscase. In the abdomenthere is a membrane whosejob is to seal off any irritant orinfection and to prevent it fromspreading. As the bacteriatravel down the shunt catheterinto the abdomen, thismembrane wraps up thebottom of the catheter tocontain the infection, and inso doing it forms a cyst. CSF

can not now drain freely fromthe shunt.

It is therefore important torealise that VP shuntinfections can appear as shuntblockage, with or withoutstomach symptoms. A simple

blood test and anultrasoundexamination, aswas eventuallyused here, will helpto diagnose thecondition. Oneimportant aspect ofJames’ account isthat GPs need toknow that anyonewith a VP shunt

who experiences stomachproblems such as these, overa period of more than a weekor so, might have a shuntproblem and that this needs tobe top of the list before otherdiagnoses, such as irritablebowel syndrome or foodallergy are considered.”

VP shunts andstomach problems

It is therefore

important to

realise that VP

shunt infections

can appear as

shunt blockage,

with or without

stomach

symptoms

Health

www.shinecharity.org.uk/hydrocephalus 21

This is very important when planning to live independently. You mayhave become used toprompting from friends orfamily to remember to lookafter yourself, likecatheterising, or takingmedication. It is helpful toexperiment with differentways to remind yourself,without someone else beingthere. Electronic organisersand phone apps have beenfound to help some peoplewith memory or organisationproblems. For example, youcan programme in an extrareminder a few minutes afterthe first, in case you forget.Getting into a routine, andusing a checklist can allhelp; however you mightneed support until thesebecome a habit.

For parents of children withspina bifida orhydrocephalus, it isadvisable to start your childoff from a young age byhelping them to organisetheir belongings.Encouraging them to putthings in their correct placemeans they don’t need to‘work out’ where lost itemsmight be. For school, helpthem colour code theirtimetable and equipment forthat lesson; for example, ared sticker on maths booksand equipment, and a redsticker on the timetable, witha checklist for each day.Don’t leave it till the trickyteen years to think aboutindependence; build up totaking responsibility bystarting early.

Roger Bayston was the first recipient of the ASBAHnational Research Fellowship in 1974, which allowed himto extend his studies of CSF shunt infections. Since thenhe has published over 120 research papers, 14 textbookchapters, and one textbook on shunt infections. He hasserved on the Medical Advisory Committee of Shine forseveral years, and is now Chairman; he is also a Shine

Board Member. He has been a member of the InternationalSociety for Research into Hydrocephalus and Spina Bifidasince 1975, and was made an Honorary Member inrecognition of his work in the field. He served as Presidentuntil last year. He is now Professor of Surgical Infection atthe University of Nottingham School of Medicine.

Go Folic!

22 www.gofolic.co.uk C facebook.com/ukgofolic twitter@gofolicuk

Get a load of this!by Martine Austin, Shine Health Campaigns Officer

Now that the dust has settled after all the activity and excitement surrounding our first Go Folic

Awareness Day, it’s time to get cracking on some new projects.

The next task is to increase therange (and accessibility) of ourGo Folic! information, to helpensure that the messagereaches even more women.

Over the past couple of yearswe have developed a greatsocial media following, alongwith a steadily increasing flowof visitors to our website.Online communications haveproved a very effective methodof sharing our information, andso, with an ever increasingnumber of people accessingthe internet with mobiledevices, we felt that the timehad come to update ourexisting website to make it bothmore accessible and more‘mobile device friendly’. Thenew look website will also seethe launch of some attractiveawareness – raisingmerchandise, including eye-

catching wristbands (in the GoFolic! pink and green colours),and pink GF polo shirts! Keep alookout on the website,Facebook and Twitter for newsof the launch...

Go Folic! leaflets are still

proving a real hit, with

many of you kindly helping

to distribute them via your

local GPs surgeries,

pharmacies, colleges and

community groups, which

is a fantastic help. I always

carry a ready supply of

leaflets with me wherever I

go (yes, sadly I do stalk

pharmacists in my spare

time), but it’s great to be

able to walk in and see

some already on display.

Our latest addition, a Welshlanguage version, is nowavailable to download from the

website (including all the latestguidance about B12), shortly tobe followed by a Polish version,with further translations in thepipeline. If you know of anyonewith fluent bilingual languageskills who would be interestedin donating some time to helpwith translating any Go Folic! orShine materials, please do getin touch with us. Similarly, ifyou know of a particular needfor materials in a specificlanguage in your area, pleaselet us know. It’s so importantthat we make our informationaccessible to as many peopleas possible.

And finally... a huge‘Congratulations’ to Go Folic!poster boy James Fox onwinning a gold medal at theRowing World Cup this monthas part of the para-mixedcoxed 4; his first internationalmedal in senior competition!

Keep a lookout for uson the website,Facebook and Twitter

Wales Cymru update...

Benny Bear made an appearance for a birthday tea at Shine Cymru’s Fun Day at Folly Farm in West Wales at the end of June. 7families from across South and West Wales came along, and spent the day exploring the farm, going on tractorrides, playing in the Pirate’s Adventurearea, visiting the new “Folly Zoo” andmeeting small farm animals in “CwtchCorner” (‘cwtch’ is Welsh for cuddle).

Several families swapped details andagreed to meet up again in the near futureto support each other, and shareinformation and experiences.

We hope to make this an annual event andwill be planning to meet up on the sameweekend next year (probably Sunday 22June), so pop this date in your diary andlook out for more information nearer the time.

Ladies that Lunch in Cardiff

Shine Cymru is setting up a ‘Ladies that Lunch’group in Cardiff for our lady members. If anyone isinterested in coming along, then please contactSian Prince on E: [email protected] or T: 02920 813847 to find out more.

We’re also keen to set up groups in other parts ofWales for other members, so feel free to contactus to find out what we’re planning!

Susie Sunshine, Llandudno

Val Conway has been a Shine Cymru fundraiserfor the past 40 years. She is an active localfundraiser involved with a few charities. However,Shine Cymru holds a special place in her heartas her daughter Susie was born with spina bifidaand hydrocephalus. Sadly, Susie passed away in2001, which is when Val began organising theSusie Sunshine Walks in her home town ofLlandudno. Now in its 11th year, the annual eventhas raised thousands of pounds, helping manyShine members and their families.

Thank you, Val – and a happy belated birthdayfor June!

Fun atFolly Farm

Thank you!A big thank you to our member Paul Houltonwho wrote to Langland Bay Golf Club inMay, and asked them to support Shine.They donated a signed Osprey shirt whichraised a whopping £127 for Shine Cymru.Diolch yn fawr, Paul!

C facebook.com/shinecymru 23

Shine Cymru News

Jo Jingles

We met for ‘afternoon tea’ at theKillyhevlin Hotel, Enniskillen,last week, and had membersfrom Co. Tyrone and Co.Fermanagh attending. Weshared the dining room with anumber of International mediapersonnel getting ready to taketheir leave after the G8 Summitat the nearby Lough ErneResort. This G8 Summit hasearned its place as the ‘mostpeaceful’ on record, and itshowcased the beauty ofFermanagh and the warmth andgenerosity of its people.

At an idyllic setting by the lakes,we enjoyed tea and spent arelaxing afternoon catching upwith each other, meeting newfriends, and planning togethersome future events of mutualinterest.

Mary McCullagh who attendedthe event said:

‘The event was a recipe forgood girlie chit-chat. Theconversation was varied,interesting and delightfullyaimless, and was fuelled by

scrumptious sandwiches,scones, and pastries; weightwatchers exit left!’

We look forward to meeting uptogether again, and inviting newmembers to enjoy these socialevents, bringing together adultmembers from Fermanagh andTyrone. Please do get in touchwith Sandra Campbell (T: 02871 354939) if you would like to join us.

News fromEnniskillen

We are really enjoying the Music & Movement sessions with

Maureen & Jo at Jo Jingles in Enniskillen.

Our children havebeen brilliant insinging, clappingand interacting withthe songs andgames. In eachsession we arelearning new songsand rhymes andhaving a great timewith the props. Thehuge parachute and

bubble machine areparticularly popular!

Maureen is verykind in providing apicnic for thechildren andrefreshments for theadults after thesession. Our youngmembers are verygood at helping

Maureen to organisethe picnic too!

FlorencecourtFamily Fun Day:Invitations on theirway for an event on4th August 2013,where we areplanning a ShineFamily Picnic 1pm – 4pm.

Shine Northern Ireland News

24 C facebook.com/shinenorthernireland

I started the party season bygoing to Vinnie Robyn’s TeaParty. Vinnie decided to raisesome money for Shine, andchose a lovely way of doing it byinviting all her friends and familyto a tea party with me! We hadso much fun chatting andmunching on cakes, and Vinnieraised £458 for Shine. I think thisis my new favourite fundraisingidea. Maybe you could try it withyour friends? But don’t forget toinvite me! (For more informationgo to www.bennysbirthday.co.uk)

I was very lucky to be invited byLynn (Shine50plusAdministrator) and Pete Hart togo with them to Glastonbury! I

had the best time, as you cansee from the pictures! Myfavourite bit was seeing theArctic Monkeys, they were verygood, but not like any monkeysI’ve seen in the wild! Thank youLynn and Pete, it was a pleasurejoining you!

By the time this is published, Iwill have been to the LondonTriathlon with Clara and Hannah.I’m really looking forward tocheering our winners in yellowacross the line! They’re allworking hard training andfundraising, so good luckeveryone, the Shine communitycan barely believe how great you are!

Lastly, please check out myblog, as the sun has finally gotits hat on and I have put loads oftips for keeping safe in the sun.You can also buy some Shadesfor Shine for added sunprotection, and they’ll make youlook very shiny and cool! Youget your shades from herewww.shinecharity.org.uk/shop.

Summer’s here!and I have been partying with some of my Benny friends!

C facebook.com/ShineBennyBear 25

Benny Bear

Can you spot Benny?

SAMC Hello everyone and welcome

to summer. So let’s update

you with all the latest news

from your SAMC, including

details of our first meeting

held on Saturday 21st April.

[email protected]

Induction Day

The new SAMC had aninduction day at Shine HeadOffice on Friday 19th April; wewere joined by CEO JackieBland, and several staffthroughout the day. It was agood chance for the new peopleto find out how everything iscarried out on a daily basis atShine Head Offices.

Developments

At our meeting on Saturday 20thApril, we were again joined byJackie Bland, and DevelopmentManager, David lsom. Apologieswere received from Liz Potts,Amar Dugal, and byMembership Officer, GobiRangnathan. Also joining fortheir first meeting were HeatherDoughty and Jason MerriII, whomake up the new SAMC.

SAMC Membership Evaluation

The SAMC focused on keyobjectives within Shine’smembership scheme. 1. It was agreed that we need afurther ‘membership drive’.Centres for Independent Livingand Wheelchair assessmentcentres were suggested; moregeneral publicity to beinvestigated. 2. When promoting the benefitsof membership, we shouldemphasise that it is free, and itisn’t just for when people are introuble. Moreover, that peer

support is a big part of the future. 3. There will be a ‘membership’article in (this) TogetherMagazine discussing the issueof increasing members. It wasalso noted that last year, 2012,780 new members joined Shine,bringing the membership to10,800. The aim for the BigLottery project was to have atleast 10,000 members by 2016,so as you can see this hasalready been achieved.

NHS Specialised

Commissioning for Spina

Bifida

Jackie Bland has been tacklingthe issue of national specialisedcommissioning for spina bifida(or rather lack of it), for sometime now. Unfortunately, withlittle success due to a poorresponse from the powers thatbe within the NHS specialisedcommissioning teams.Therefore, what each member ofthe SAMC is doing is sending atemplate letter to his or her localMP, drawing attention to thisissue. l will update everyone inthe next issue of how many MPs

actually get back to each of us.

Chair/Vice Chair

A new Chair and Vice Chair willbe elected soon to cover thenext 3 years. Any SAMC personcan put themselves forward.Applications are assessedagainst set criteria and ifnecessary put forward to a vote.

Get in touch!

Remember your SAMC is herefor you! So if there is anythingwe can help with or maybe youjust want to ask a question, youonly have to get in touch and wewill do our upmost for everyone.You can contact me via theemail address below.

Mike Bergin SAMC

Communications Officer.

SAMC News

26 www.shinecharity.org.uk/samc

The Editor would like to apologise toMike Bergin for incorrectly stating ina previous issue that he has twochildren. Mike has four children, weare sorry for any hurt or confusioncaused by this error.

Events

Great news! We have so manygreat events happeningthroughout the Shine communitythat we don’t have enough spaceto write about them all in Together.

To find out the date and time of your next support group or Shine

social function, please contact Shine Head Office on T: 01733 555988

E: [email protected] or visit theevents page of the website

shinecharity.org.uk/events

Events

Then we have a competition for you!Shine is teaming up with Wheelie Chix, togive two of our female members a stylistmake-over! The prize will include an outfit,a hair and make-up session, and finishwith a glamorous photo shoot!

The entry requirements are very simple.To enter you must be able to travel toPeterborough for the shoot (advancenotice will be given to allow for travelarrangements), be a Shine member, andbe a lady! All you need to do is email

[email protected] with

your details and then we will draw two

names from the hat.

For further information about buying fromWheelie Chix go to www.wheeliechix-chic.com/

Don’t despair gents! We will hopefully berunning some styling competitions for youin the near future.

Wheelie ChixCompetition

Calling all

female

members! Do

you use a

wheelchair or

spend long

periods sitting

due to mobility

issues? Does

this make it hard

for you to find

clothes that fit

comfortably?


Last year you raised £10,000 through WearYellow and Shine events across the country.This year we want to beat this amazingachievement with even more people wearingyellow for the day.

Spina bifida and Hydrocephalus AwarenessWeek is an annual opportunity to raise theprofile of the conditions which affect tens ofthousands of people in England, Wales andNorthern Ireland.

Schools and workplaces often book thesecharity days in advance so please speakwith your contacts as soon as possible aboutsigning up for this year’s event!

You can hold your event at any time, onegreat idea might be to use the final friday ofthe school term – Friday 25th October – asthe day for Wear Yellow and Shine.

Spina Bifida andHydrocephalus

Awareness Week 2013

19th - 26th October 2013

To get your Wear Yellow and Shine supporters pack, or to find our more, please call

Hannah Wysocki on 01733 421351 or email [email protected]

shinecharity.org.uk/wyas

Turn your school, workplace, or local group YELLOW this October with Wear

Yellow and Shine for the next Spina Bifida and Hydrocephalus Awareness Week!

Together issue 10

News & Politics

Transcript of Together issue 10