together issue 11

Inside: Shine Awards The Chairman’s Challenge AGM

WinifredShines on99 and still going strong

Issue 11

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SHI_Together_Issue11_v3_Layout 1 11/11/2013 16:11 Page 2

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CONTENTSP4 The Chairman’s Challenge

P6 Shine Awards

P11 Carl Eaton

P16 Fundraising Update

P18 Craig Newman

P22 Benefits Update

P26 Benny Bear

Submission dates forWinter edition• Register of interest to submit:

20th December 2013• Final date for submissions:

3rd January 2014• Publication date:

February 2014

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]

In recent months we have seen a huge growth inthe profile of Shine. This is not just based on afeeling, this is due to actually seeing newdevelopments unravel before our own eyes! Thesedevelopments include the great success of thesecond annual Spina Bifida and HydrocephalusAwareness Week which saw the highest number ofmonthly hits to the Shine website... ever!

We also had over 100 individuals, schools,workplaces, nurseries, and community groups signup to Wear Yellow and Shine during AwarenessWeek – this was four times the number involved lastyear!

On the 24th October, during Awareness Week, ourAGM was very kindly hosted by Coloplast at theirPeterborough Head Office, and everyone involvedagreed that the experience was unique - there wasso much positivity and genuine reason forcelebration that all attendees left the buildingbeaming about the successful work of Shine.

The same afternoon, we enjoyed the annual ShineAwards at which we celebrated the fundraisers,volunteers, and professionals who make Shine thevibrant life-changing community which it continues todevelop into.

All of this great news is reflected in this, the eleventhissue of Together. As well as regular features onaspects of health, occupational therapy, benefits,your SAMC, and fundraising, we also have inspiringfeatures from the world’s oldest person with spinabifida, and inspired coach Carl Eaton, who runs avibrant football club in Skelmersdale.

Have a great Christmasand New Year!

The Editor flying the flag for Awareness Week

Cover photo: Winifred Connolly. Photo: Tom Scott

Welcome to Together


The Chairman’s Challenge

4 www.shinecharity.org.uk

We recently received the sadnews that former ASBAHFieldworker, Margaret Holmes,passed away on 16th October2013.

Margaret, who had spina bifida had been involvedwith her local association for a number of years,holding the position of Chairperson for five of those.Margaret then became a fieldworker for ASBAH inthe Bromley, Bexley and Croydon area between1988 and 1995.

After retiring, Margaret resumed her active role inthe South Thames Association as Secretary andwas known for her insight, empathy, and generosity.Margaret was an avid volunteer who was dedicatedto serving her community, working with abereavement group and her local Church. In herpersonal life her passions were travelling, cookingand cricket.

Shine recognises and appreciates the impactMargaret made to the London and South Region.Our collective condolences go to Margaret’s familyand friends at this time.

The Chairman of Shine's Board ofTrustees, Richard Astle, will becelebrating his 10th anniversary asChair in 2014.

To mark the occasion, Richard will beembarking on a year-long awareness andfundraising initiative, which was announcedat the recent AGM and will be officiallylaunched at a high profile reception inDecember.

Activities will include a wide variety of eventsand fundraising endeavours includingrunning events, the first ever ‘Big Yellow Ball’,and the year will culminate with a sponsoredtrek, which will see Richard and his keenestsupporters make their way across Morocco.

This appeal is a huge undertaking and weneed all Shine members to support it asmuch as possible by promoting it via thesocial networks, so please keep your eyespeeled for updates!

10th anniversary celebrations

Margaret was an avid volunteer who wasdedicated to serving her community, workingwith a bereavement group and her local Church

Obituary Margaret Holmes

Activities willinclude thefirst ever ‘BigYellow Ball’and culminatewith asponsoredtrek

Shine Chair,Richard Astle


C facebo ok.com/ShineUKCharity @SHINEUKCharity 5

Annual General Meeting

As 60 members, friends, and family met to hearthe results of Board elections, more than 100groups up and down the country were takingpart in ‘Wear Yellow and Shine’ events to raiseawareness of spina bifida and hydrocephalusand precious funds for Shine.

Three new Directors were elected to the Board:Sally Hesling has been a practising solicitor for13 years; and is the mother of twin boys one ofwhom has a rare form of spina bifida, YvonneLindsay, has a 19 year old daughter with spinabifida and is a qualified GP currently workingfreelance; and Peter Serjent, who worked for 18years as a marketing expert developingbehaviour changing multi-media campaigns,including campaigns on disability issues. Thesewere the first directors to be elected by thewhole membership under Shine’s more open,democratic structure. Professor Roger Bayston,Chair of Shine’s Health Advisory Council, gave ashort presentation on how a shunt works, whilstCEO Jackie Bland reflected on a year ofincreasing profile and activity for Shine. As partof her presentation she played the new ‘GetInside My Head’ animation, which features alittle girl explaining how hydrocephalus affectsher. Jackie explained that the animation wouldbe played throughout the world as part of theinternational PUSH initiative (more info aboutPUSH at www.IFglobal.org).

AGM welcomesnew Directors

The event was generously hosted by Shine’s corporate partnerColoplast at their impressive and friendly Peterborough base.

Shine’s AGM took place during themost high profile Awareness Week yet.The event was generously hosted byShine’s corporate partner Coloplast attheir impressive and friendlyPeterborough base.

Professor Roger Baystonaddresses the AGM

New TreasurerAiden Kehoe

Patron, actorDavid Proud


Shine Awards


Now in their fourth year, the2013 Shine Awards onceagain gave the charity achance to honour the peoplewho make it all possible.Fundraisers, volunteers,professionals andinspirational young peoplewere celebrated in a warmhearted and emotionaloccasion shared by relatives,friends, Shine staff andDirectors, and of course,Shine members who hadstayed on after the AGM.

Professor Roger Bayston wonthe prestigious ‘LifetimeContribution’ Award for hislifelong dedication to the healthof people with spina bifida andhydrocephalus, whilst ShinePatron Danny Mills waspresented with a one-off‘Outstanding Ambassador’Award for his dedicated pursuitof opportunities and funds forShine.

2013 Shine A– reflecting inspiration and dedication

� Toni Allen-Bewley receivingthe Shine Young Achiever’sAward

� Clara Gill presenting DeanGodwyn with the Fundraiserof the Year Award

� Stephen Collett receivingthe John & Lucille van GeestAward for OutstandingService to the ShineCommunity

� Chairman Richard Astlepresenting Danny Mills withthe Shine OutstandingAmbassador Award


Shine Awards


Awards–

� Shine Patron, David Proud and Coloplastrepresentative, Hayley Porter, presenting LauraDennis with the Shine Young Achiever Award.

� Amar Dugal presenting Professor RogerBayston with the Lifetime Contribution Award

� Tom Scott presenting Phoebe Ashworthwith the Young Fundraiser of the Year 2013

� Rebecca Morris presenting Stacie O’Neillwith the Volunteer of the Year Award

Sponsors of Young Achiever andShine Professional Awards


To be honest, myrecovery has beenslow and arduous. A lotof my efforts have beenfocused on my mobility,as that was the key togetting me back ontrack. By increasingmobility, I was able tostart driving again,albeit with assistancewhen taking thewheelchair in and outof the car. But this atleast gave me somefresh air and somemuch needed freedomfrom sitting at home allday waiting in for thedistrict nurse.

Once I had my mobility,there was no stoppingme and, by the end ofAugust, I managed torestart in the gym. Thestart of September saw

me return back tobadminton training too!It’s fair to say this hasbeen a long haul, evenby my standards. ButI’ve now come out theother side and ammaking great progress.Although I hadn’tofficially returned backto my Shine activities,I’ve been keeping tabson things and still beenraising awareness ofShine. I’ve also had thegood fortune ofintroducing our veryown Benny Bear to acouple of VIPs! I, alongwith Benny, not only

met and had a photowith ex-ManchesterUnited, Leeds Unitedand England star, LeeSharpe, but also MrPaul Mitrofanoff. Thelatter meeting wasparticularly special tome, as it was hiscreation of theMitrofanoff Procedurethat has allowed me toget where I am today.Without my Mitrofanoff,I doubt very much that Iwould have achieved

half the things I havedone to date.

With Spina Bifida andHydrocephalusAwareness Weekhaving taken place atthe end of October, itseems I returned towork at the perfecttime! The fire in mybelly has returned andI’m looking forward todeveloping andgrowing themembership in manyexciting ways – I hopeto see many of youwhen I’m back on myShine travels soon!

Gobi’s back!

8 www.shinecharity.org/our-community

Gobi’sgossipHi everyone! Since my lastgossip page, I’ve beenmaking steady progress,although slower than Ianticipated. However, asyou read this, I should beback in full swing of myShine duties and usualroutines.


Hydrocephalus Awareness

w youtube.com/ShineUKCharity 9

Get Inside My HeadIn an effort to overcome the fact that hydrocephalus remains a largely unknown condition,Shine has produced an animation called ‘Get Inside My Head’.

The aim of the short feature is toincrease awareness and helpthe wider public understand theproblems faced by those wholive with the effects of brain fluidretention. A book has also beenproduced to complement theanimation and ensure thewidest possible audience for thepiece.

Hydrocephalus affects 1 in1,000 live births in the UK andcan also be experienced later inlife, especially after an injury tothe head. Hydrocephalusoccurs when the body fails todrain away the right amount offluid from the brain, a substanceknown as cerebrospinal fluid.

The build-up of pressure o n thebrain can have a variety ofbrain injuring effects such asproblems with memory,organisation, and behaviour.

Most people who experiencehydrocephalus in the UK willhave a shunt, a thin rubbertube, fitted in order to drain thefluid away to the abdomen.Although the procedure issignificant and leaves a scar,there are often no obvious signsthat a person is living with theseeffects.

Significantly, a shunt does notcure hydrocephalus and cannotrepair the injury caused to thebrain by this excessivepressure.

The animation features thevoice of a young Shinemember, Ella Thomas, whodescribes the effectshydrocephalus has had on herbrain and how this can affecther approach to daily life.

Shine believes the animationwill be helpful to the friends,family members, teachers, andclassmates of those living withthe condition, helping them to

understand what life is like andhow they can help.

The animation was launched atthe beginning of Spina bifidaand Hydrocephalus AwarenessWeek. It is available to view onShine’s website and YouTubechannels, and DVDs have beenproduced to ensure thateveryone can access the film.http://bit.ly/ellafilm

The animation features the voice of ayoung Shine member, Ella Thomas, whodescribes the effects hydrocephalushas had on her brain and how this canaffect her approach to daily life.


Shine interview


‘Was I behaving myself?’, Winnie asks with amischievous grin. Winnie and her daughterJoyce are looking over some old photographsand the one in hand shows a group photofrom Winnie’s 95th birthday party. Now aged99, we believe Winnifred Connolly could be theworld’s oldest person living with spina bifida.

In her own humble way, Winnie is an extraordinarywoman. Born with spina bifida occulta in 1914, onthe eve of the First World War, twice widowed, themother of three children, a munitionsworker during the Second World War, agrandmother to six, and greatgrandmother to five, it’s fair to say thatWinnie has lived an incredibly full life.

As the interview proceeds, it is clear tosee that Winnie’s sense of humour is amajor source of her vitality. We movethrough accounts of school-ageadventure, foreign travel stories, andprecious family memories, all the time laughingloudly and reflecting on the past with fondness.

Almost in passing, Winnie recalls what she wastold of the procedure to treat her spina bifidaocculta. ‘They say that when I was born there waslike a little pimple on my back, and that themidwife nipped it off with her nails.’ As she gotolder she was encouraged by an Aunt, whoworked as a Sister in a local hospital, to see aconsultant due to on-going back pain, but Winnierecalls, ‘My mother went crackers, oh, she wentmad. She said, ‘You’re not going!’ She had a thing

The secretto being 99?Tea and laughs!

about hospitals; she didn’t believe inthem and none of us have ever beenimmunised. I’ve never had a flu jab.’ After discussing the possible plans for

her 100th birthday celebration next June, Winnieoffers her thoughts on the secret to a long life, heranswer is inevitably a canny mix of the seriousand the hilarious, ‘Cups of tea! No, just behaveyourself!’ [Loud laughs] ‘Don’t take life tooseriously, try and help each other.’

With this, our time together ends, Winnie preparesfor her regular trip to see her daughter, Doreen, inWales and finishes her tea with Les and Joyce,her two older children, the memories of hurricanesin America and taking part in Radio 4 interviewsstill reverberating around the room.

Winnie is an extraordinary woman. Born with spina bifida occulta in1914, on the eve of the First World War, twice widowed, the mother ofthree children, a munitions worker during the Second World War, agrandmother to six, and great grandmother to five...

Winnie with two of her threechildren, Joyce and Les, and (left) asa young child on her mother’s knee

by Tom Scott



Feature

Here at Shine, we hear so many positivestories and see great things happening daily,especially on our social networks.

However, there are some stories which have to beseen to be believed. I was recently invited to visitSkelmersdale, Lancashire, by Carl Eaton andeveryone involved in the Skem Men-aces, afootball team with a difference in the North ofEngland.

Carl, along with his wife,daughter, brother, andfriends, established thisdynamic football club formen with a variety ofdisabilities back in June2009. The initial idea was toprovide a few lads with a bitof a kick around; however,the idea soon took on a lifeof its own.

I visited the Skem Men-aces on the last day ofSpina bifida andHydrocephalus AwarenessWeek, and was in for a realsurprise! The whole clubwere wearing Shine yellowt-shirts and had been busyfundraising for us. Thegroup raised an amazing£650, as well as generating unmissableawareness in their striking Wear Yellow andShine outfits.

I spoke with Carl, who himself has spina bifida,about the Skem Men-aces and exactly what hasmade the club such a success.

‘One of my brothers, Harry, has a learningdisability and we wanted to start something thathe could be involved in. The conversation startedand in less than a week a football club was

mentioned. We startedwith 12 lads, and coatsfor goals, and now lookat us – 40 lads training,playing matches, gettingfit, and having somethingto focus on!’

‘The really powerful thingis that many of theselads have nothing else tofocus on in the week; thisclub gets them out,they’re losing weight,having a laugh, andtravelling the country –some of them had neverbeen outside ofSkelmersdale before theclub got going!’

Although there are a variety of conditionsrepresented, the group includes three memberswho have hydrocephalus. Carl reflects, ‘I’ve wonvolunteer awards, some national, but it’s notultimately about that – it’s about giving these guysan identity, some dignity, and an opportunity tobelieve in themselves whatever their level of ability.’

Tom Scott

To learn more about the Skem Men-aces, please visit: W: skemmen-aces.org.uk

Skem Men-aces –a club with a difference

Inspirational! Carl and family


A co-ordinated approachOccupational Therapy Officer, Emma Enfield explains fine motor skills.

Fine motor skills involve the small muscles of thebody that enable functions such as writing,grasping small objects, and fastening clothing.Weaknesses in fine motor skills can affect a child'sability to eat, write legibly, use a computer, turnpages in a book, and perform personal care tasks.

You might already have a treatment programmefor your child prescribed by an OccupationalTherapist, but there are plenty of activities whichyou can do at home. Here is an idea that will helpto work on a toddler’s fine motor skills and hand-eye coordination:

Give the child a colander and some coloured pipecleaners, and let them poke them through theholes. Show your child how to do it as often asneeded, take turns, or just let them have funworking it all out. You might be surprised at justhow entertained they will be.

This activity is ideal if your child can grasp objectswith their whole hand or with the thumb and indexfinger, but isn’t able to do more refined fine motoractivities such as lacing beads on a string. You maywell find they can pull them out easier than putthem in to start with.

Encourage your child to hold the pipe cleaner withtheir fingers pointing toward the tip and you’removing towards the dexterity required to hold apen. Depending on your child’s age and skill level,

you can change the game slightly by adding incolours, sizes, etc. But always be aware of yourown child’s abilities, as play should be fun and notstressful.

Another nice game is pom-pom pushing. All youneed is a plastic food container and some littlewoolly pom-poms. You need a lid on the foodcontainer and to not mind having holes cut into it! Alarge ice cream container or something similarwould do.

Cut some holes in the container just a little bitsmaller than the pom-pom. This allows them topractise putting the pom-pom onto the hole andthen encourages them to use their index finger andthumb as they push down. Again, this is also goodpractice for holding a pen.

If you place the pom-poms on different sides of theboxes, then your child will be moving from side toside to reach them. This is really good balancepractice. Don’t worry if they can’t sit unaided, thiscan be practised with them sitting on your knee andsupporting them as they reach forwards andbackwards, so once all the pom-poms are in, theycan practise trying to get them all out again!

Happy playtime!

Emma EnfieldOccupational Therapy Development OfficerE: [email protected]

Health and Development

12 C facebo ok.com/ShineUKCharity @SHINEUKCharity


Health information

www.shinecharity.org.uk/hydrocephalus 13

Hydrocephalus describes conditions in which thefluid in and around the brain, CSF, is trapped andcauses high pressure. The pressure can harm thedelicate brain tissue, so needs treating with ashunt to remove the fluid from the head, or a ThirdVentriculostomy to divert the fluid to the outside ofthe brain to be absorbed.

There are many causes of hydrocephalus, suchas Aqueduct Stenosis, head injury, haemorrhageor tumours, and each one of these causes has itsown effect on the brain. Brain cellscan react to pressure by forming lotsof small scars, which can alter theway the brain and learning develop.

In addition, the speed at which thepressure rises in the head can havedifferent effects on the brain tissueitself. When pressure builds slowly,extra small blood vessels begin toform in the brain, which ensuresblood and oxygen continues to getinto the brain despite the highpressure in the head. This helps theblood supply, but over time makesthe brain tissue stiffer, and less ableto adapt to changing pressures.

This is important, as the brain is in an almostenclosed bony box, and when shunts are fitted,pressure changes beyond the usual ranges areinevitable, even with the best, most appropriateshunts which are working fine. And, because of allthe changes to the brain tissue itself, it will bedifferent for almost everyone.

Shunts drain fluid using a combination of pressureto open the valve, gravity to drain the fluid, andproperties of the tubing and the fluid to control theflow. This means that for many shunts, they willdrain more when you are upright, and less whenlying down. Overdrainage and underdrainagesymptoms, like headaches and dizziness, can bemore troublesome at different times of the day orduring different activities. ‘Life with a shunt’

doesn’t mean ‘living without hydrocephalus’. Manyof our members tell us they get unpleasantsymptoms, even when their shunt is working ‘fine’.

Shunts have saved many thousands of lives sincethe late John Holter designed one with Dr Spitz totreat his young son Casey. Over the 55 yearssince the invention of the shunt, the design hasonly changed a little. The principle is the same,with CSF flowing from the head to another part ofthe body (which used to be the heart, but now

most commonly the abdomen) and iscontrolled by a one-way valve.

Some UK hospitals are using sub-galeal shunts in tiny babies, whomight not need a full shunt, but whoneed some temporary drainage for afew days. This shunt drains fluid intoa pocket on the scalp between theskin and the skull, where the fluid isabsorbed over time. This is provingto be better than removing the fluidwith a needle, which can only bedone for a few days before a VPshunt is needed.

According to Dr Pat McAllister of theUniversity of Utah, in the future, it may be possibleto implant a tiny pressure sensor to work withvalves to control flow and pressure far moreaccurately than at present. Dr McAllister is alsoworking with mathematician Professor KalyanRaman, to see if the shunt design can beimproved.

Looking a long time into the future, it may bepossible to reverse early hydrocephalus with stemcell technology, which the lab Professor EstebanRodriguez is working on in Chile.

With so much research going on over the world,it’s possible that prevention or cure for some formsof hydrocephalus is just over the horizon. Untilthen, for most people, treatment with a shunt, evenwith its problems, is the best that we can hope for.

Hydro shunt issues

With so muchresearch going

on over theworld, it’s

possible thatprevention orcure for some

forms ofhydrocephalusis just over the

horizon.

By Gill Yaz, Health Development Manager


The SpeediCath Compact Setaddresses the need forconvenience and discretion foranyone requiring a compactcatheter and integral bagsolution; so it’s an ideal solutionfor people catheterising from awheelchair, or even for peoplewith dexterity or mobilitychallenges that are looking forextra security and confidencefrom the potential for less risk ofspillage. It’s also great for thosethat travel or have troublefinding wheelchair accessibletoilets.

Your feedback and suggestionshave enabled us to create a newsleek design which has alreadyled to it winning several awards.One of the most recent awardshas been the international RedDot Design Awards, which is theworld’s most prestigious designaward – where the design jurypicked SpeediCath Compact setout of 4,662 entries from 54countries!• The only compact and

discreet catheter with anintegrated and sterile bag

• Simple and intuitive foreveryday use in and out ofhome

• A unique coating for instantand easy use

We’ve already launchedSpeediCath Compact Set inseveral countries across theWorld and feedback tells us thatSpeediCath Compact Setprovides:

Ease of use: The product is opened andready in 3 fast and easy stepsand is instantly ready-to-use.The hydrophilic catheter coatingis already activated and theopening and preparation of theproduct is very simple andintuitive. The cylindrical tube ofthe catheter makes it easy forpeople to grip and twist to openthe product, and the handle ofthe catheter is larger than astandard connector whichprovides a firm and dry grip.

Discretion:SpeediCath Compact Set iscompact and has an appealing,non-medical design. You don’thave to bring along any furtheraccessories as SpeediCathCompact Set is a compact all-in-one solution. There is less riskof spills or leakage as the bagcomes already pre-connected tothe catheter. The 750 mlcapacity bag is more thanadequate to empty the bladderand be sealed until ready to beemptied.

Innovation in CatheterisationColoplast would like to thank everyone who has provided us with feedback and suggestions forimproving products and we’re pleased to tell you that we’ve listened and responded to yourneeds. We’re proud to launch the latest addition to the SpeediCath family – the innovativeSpeediCath Compact Set solution.

If you would like a sample, then please visitwww.TRYset.coloplast.co.uk or call us on 0800 220 622.

14

Advertising Feature


Less to carry

Less noticeable Less waste to dispose of

Less steps to perform

Less to store at home

www.coloplast.co.uk

The Coloplast logo is a registered trademark of Coloplast A/S. © 2013-08 All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

The catheter and bag set reinventedIntroducing SpeediCath® Compact Set – for simpler everyday catheterisation

To receive a sample, simply complete and return this coupon in a sealed envelope and send it to: Charter Healthcare, Nene Hall, Peterborough Business Park, Peterborough PE2 6FXWhat size of product do you currently use: CH

Your current product is called:

Please confirm that you are currently using intermittent catheters and

have been taught by a healthcare professional

Men only:

Do you use your intermittent catheter for dilation?

Enter your details so we can send it to you:

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Small enough to fit in a pocket or handbag, SpeediCath Compact Set redefines the concept of the all-in-one catheter and bag set.

Available in male and female from 1st October 2013

Want to try it? Sign up for free samples now at trySET.coloplast.co.uk

Sign up for free samples

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The information you provide to us will be used to process your orders and for general administrative and record-keeping purposes. We will only disclose your personal information

to us, you consent to Coloplast using your information in the manner described above and to us contacting you by email and/or telephone and/or post in order to keep you informed of Coloplast products and services that we think may be of interest to you. If you would prefer that we do not contact you in these ways, please let us know by ticking the

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15


16 C facebo ok.com/WinnersWearYellow

Fundraising for Shine

On Saturday 28th September, agroup of well-voiced men fromStoke-on-Trent gathered withthe ‘Audley Brass’ band topresent a charity concert in aidof Shine.

Inspired by young memberHarry Smith (aged 5), theconcert was led by MusicalDirector Ian Jones (Harry’sGranddad), who wanted tothank Shine for the support that

their family has received. Theconcert has raised over £2,500for Shine and considerableawareness for spina bifida andhydrocephalus, with a greatresponse from the localcommunity and coverage in theregional press. Thank you toeveryone involved with afantastic event – it has been ourpleasure to support you and weare very proud to be associatedwith all your hard work.

It’s been a busy summer for our fundraisers,who have taken on a variety of rough andready physical challenges to earnsponsorship for Shine. Special thanks for theoutstanding achievements of PhoebeAshworth (British 10K Run), David Graney(Wiltshire 100 Cycle Ride), Jenny Taylor(Ipswich Half Marathon) and David Armour(Great North Bike Ride), who have raisedover £10,000 between their individual eventsthis summer! Finally, a special hot chocolatetoast in honour of all our Great North Run andGreat Eastern Run participants and the ShineTeams who went to the race. This year, theyhad to brave the worst weather that theevents have ever seen. Your dedicationknows no bounds – thank you.

Wear Yellow andShine for AwarenessWeek 2013

With the second SpinaBifida and HydrocephalusAwareness Week (19th –26th October) having justfinished, we would love totake the opportunity tothank everyone for theincredible response wehave had in support of thisevent.

At the time of writing, wehave had over four timesthe number of eventsplanned compared to thistime last year!

There will be a full updateon this year’s ‘Wear Yellowand Shine’ in the nextedition of Together. Watchthis space and THANKYOU!

Wetley Rocks Male Voice Choirand Audley Brass Charity Concert


Awareness Week 2013

C facebo ok.com/WYAS 17

Awareness Week 2013Thank you to everyone who got involved with ‘Wear Yellow and Shine’ for Spina Bifida andHydrocephalus Awareness Week 2013.

We have so many amazingphotographs – here are a few,but check our dedicatedFacebook page (the link is atthe bottom of this page) formore pictures and stories, toshare your own, or just tocongratulate everyone ontheir astounding fundraisingachievements.

The dedication we have seenfrom all of you has beenamazing. Thank you so much!


Shine interview...

18 C facebo ok.com/ShineUKCharity @SHINEUKCharity

The series follows people indifferent social situations asthey try to live by the rules ofthe 1949 welfare state. Thisparticular episode featuredCraig, who has spina bifida, asa person with long termsickness, and a pensioner. Littledid Craig know how much thisexperience would affect him. Hetold Louise Tyler whathappened.

Before taking part in ‘BenefitsBritain 1949’, Craig had appliedfor over 1,200 jobs and onlybeen offered 5 interviews.However, the documentarydidn’t tell the whole story.Before filming started, whilstCraig was in hospital, hisbenefits were suspended. Hewas left depressed and worriedabout how he would pay hisbills or where his next mealwould come from.

His benefits were suspendedbecause his ‘full-time’ collegecourse wasn’t what theDepartment of Work andPensions considered full-time.This was an enormous blow toCraig because the course was afirst step towards fulfilling hisdream of going to university.

Today’s benefit system had lefthim in a desperate position,where his only chance ofsurvival was to give up onimproving his prospects.

Then Craig was approached tobe part Benefits Britain. Heexplained: ‘I was interested dueto the historical aspect, thecontrast really; what was it likefor a disabled person in 1949?Were people better or worseoff?’. He was told that he wouldbe asked to complete a seriesof tasks: ‘I said I’d give 100%’.He visited the supposed 1949DWP office first and was metwith a shock. He had notcontributed to NationalInsurance and therefore wasnot entitled to any financialsupport. He was given £7.80from the ‘emergency fund’ andsent away.

‘I was quite surprised not toreceive any financial help underthe 1949 system, but at thattime the focus was more on warveterans. People born withdisabilities just had to get onwith it’, Craig explains.Luckily for Craig, the 1949system did reward a willingnessto work and there he had plenty

of it. He agreed to attend anIndustrial Training Centre andwas given an allowance of£100.

‘Surprisingly it was more thanmy current JobseekersAllowance. I enjoyed going tothe 1949 training centre; it gaveme the chance to prove tomyself and everyone else what Iwas capable of.’

Craig started to believe that the1949 Welfare system was much

Craig benefitsfrom 1949welfare systemEarlier this year, Craig Newman felt that life was prettyunfulfilling with few prospects. Then a friend asked him if he’dtake part in a documentary series called ‘Benefits Britain 1949’.

Craig is now livinghis dream. The jobhe was offered hasenabled him to earnmoney whilst doinghis access course,and havingsuccessfullyfinished that, hestarted studying atUniversity inOctober – all thanksto systems thatwere in use 64 yearsago!

by Louise Tyler


more caring than the 2013 one.‘In 1949 everyone was treatedas an individual. It helped thatthe person assessing me had agood knowledge of spina bifida,so they knew what would bechallenging and were moreinterested in what I could do.’

Craig’s 1949-style assessmentsuggested that he was bestsuited to office work and thiswas accepted by present-dayWelfare Officers who were onhand during the filming. They

helped Craig to find a day’swork experience in a call centre.As with every task presented tohim, Craig gave 100% andshortly afterwards he wasoffered a job. Benefits Britainviewers witnessed Craig’semotional response – ‘My firstever job offer! I feel like acapable human again.’

The film revealed thateverything that the currentwelfare system had taken awayfrom Craig – the opportunity to

improve his prospects, moneyto complete training, support infinding work – was given backby the 1949 system.

What does the future hold forCraig? Well, now he is living hisdream. The job he was offeredenabled him to earn moneywhilst doing his access course,and having successfully finishedthat, he started studying atUniversity in October – allthanks to systems that were inuse 64 years ago!

w youtube.com/ShineUKCharity 19

Craig Newman

Photos: Laura Read


Accessing services in West WalesIn the last Together magazine, Jackie Bland wrote about the work Shine and our members aredoing to help improve access to specialised services so… What are we doing in Wales?...

Shine Cymru

The ‘Screening for Life’ campaign in Walesis aimed at raising awareness andencouraging men and women of certainages across Wales to take up free testingfor NHS breast, cervical and bowel cancerscreening. The campaign also promotes therecently launched Wales Abdominal AorticAneurysm (AAA) Screening Programme.

The Screening for Life team tell us that there is not enough uptake, so please have a look at the websitewww.screeningservices.org.uk/ or contact the local Screening Engagement Team for further information.

South East Wales: 02920 397222 South West Wales: 01792 459988 North / Mid Wales: 01492 860888

We’ve gradually been discovering that our membersin West Wales often have difficulty being referred tosee specialists in other hospitals. We don’t knowwhy yet, but it seems that one of the possiblereasons is that funding is controlled by individualLocal Health Boards, and that they are reluctant tosend people to another Health Board area forservices.

We may be wrong so we need to gather moreevidence to find out. Shine Cymru met with theCommunity Health Council in the Hwyel Dda LocalHealth Board area to raise members’ concerns.

They have agreed to undertake a survey of peoplein West Wales to identify where the problems lie.We have asked them to then address the issues tothe Head of the Local Health Board and ask for asolution to these on-going problems.

If you have had difficulty accessing health or socialcare services, please let us know more on T: 02920 813847 or E: [email protected]

Screening for Life –don’t bury your head in the sand!

Remember, if you go for screening, it is

important that you let the teamknow about your disability, as they

should ensure the screening iscarried out in a way that

meets your needs.

20 C facebook.com/ShineCymru


Fundraising inNorthern Ireland

Shine NI

www.shinecharity.org.uk/northernireland 21

On a very wet day, Steve Gelty, Mark Finlay, FionnualaBlack and Ben Doherty abseiled down the Europa hotel.Between them they raised over £1,100!

We had 6 cyclists Lap the Lough for us this year. Thecourse is 85 miles and goes round Lough Neagh whichis the largest fresh water lake in Great Britain.

We have also had marathonrunners in several eventsacross Northern Ireland. Thephoto to the left is of AmandaMcNeilly (with Chloe)completing the Belfast halfmarathon.

Why not sign up for our Shine Abseil next year andmake the Europa yellow?

Physiotherapy servicesacross WalesShine Cymru is a member of theWales Neurological Alliance, whichenables us to be part of a biggerplatform for awareness raising andstrengthening members’ voices tolobby for better services.

Some of our members completed aquestionnaire last year aboutphysiotherapy services in Wales and,again, this has proved another bigissue for our members.

As a result, a report has beenproduced and all Directors of LocalHealth Boards have been asked toprovide information on how they aremeeting the needs of our memberswho need specialist physiotherapyservices. They have also been askedto tell us how they plan to address theneeds that are not being met, sowatch this space and we will updateyou when we can.

Volunteering in WalesThe North Wales Friends of ShineCymru held a celebratory ‘CreamTea’ to thank volunteers for theirvolunteering and fundraisingefforts over the last year, whichhas been supported by theVolunteering in Wales Fund.

Shine Cymru, Office 10, Unit 2,Ynysbridge Court, Gwaelod-Y-Garth,Cardiff. CF15 9SST: 02920 813847E: [email protected]


Benefits Update

22 www.shine.org.uk/how-we-help/welfare-benefits

Baffled by Benefits You will probably be aware thatDisability Living Allowance(DLA) is gradually beingphased out and replaced withPersonal IndependencePayments (PIP). This moveincludes people who have anindefinite or lifetime DLAaward, but they should notneed to make a claim for PIPuntil after October 2015.

However, from October 2013until October 2015, theDepartment for Work andPensions (DWP) will invite youto make a claim for PIP if:• your DLA is due for a renewal• you turn 16• you want to have your claim

for DLA re-assessed• you report a change in your

circumstances*.

When you are invited to applyfor PIP, it is important that youdo so within four weeks as youwill not automatically transferfrom DLA to PIP.

Usually your DLA won’t beaffected if you go:• into hospital or a care home

for less than 4 weeks• abroad for less than 13

weeks• abroad for less than 26

weeks to get medicaltreatment for a conditionwhich began before you left.

If in doubt, contact the Disability Benefits Helpline on 08457 123 456 to check.

Council Tax Reduction schemeThe Council Tax Reductionscheme replaced Council TaxBenefit from April 2013. It is used to help you meet thecost of your council tax bill, andthe amount of help awardeddepends on how much incomeand savings you have, your familycircumstances and the amount ofyour Council Tax. If you areawarded help, it is paid directly toyour Council Tax office.Application forms should berequested from your local counciloffice.

NB: the Council Tax Reductionscheme only applies in Englandand Wales. It does not apply inNorthern Ireland.

Welfare reform – key dates formore changes October 2013 –Universal Credit Universal Credit will start to berolled out for new claimants inEngland and Wales in October2013. Existing claimants will bemoved over at a later date. It isexpected to be introduced inNorthern Ireland from April 2014.

Universal Credit Helpline number:0845 600 0723

March 2014 – IncapacityBenefitsAll existing claimants onincapacity benefits (i.e.Incapacity Benefit, SevereDisablement Allowance andIncome Support on disabilitygrounds) will be transferred toEmployment and SupportAllowance by the end of March2014.

April 2014 – Jobseeker'sAllowanceChanges include: • extending the waiting period

for first claims from threedays to seven

• longer initial interviews fornew claimants, who mustprovide a CV

• claimants with poor spokenEnglish required to attendclasses, or face sanctions

• weekly meetings, instead offortnightly, with Job Centreadvisers for those deemed tonot be doing enough to find ajob.

Important information about Disability Living Allowance (DLA)

Citizen Advice Bureau: For residents in Northern Ireland, visit www.citizensadvice.co.uk/getadviceand for England and Wales www.citizensadvice.org.ukGovernment information: www.gov.ukDisability Rights UK: www.disabilityrightsuk.orgTurn2Us: www.turn2us.org.ukEntitledto: Visit www.entitledto.comShine’s team of Support and Development Workers throughShine’s first point of contact on 01733 555988.

*Please note: the DWP advises that you should report a change in your circumstances if your condition improves or you need more help.These changes can affect how much DLA you get and when you’ll be affected by PIP.

Where to go for more information


Christmas cards 2013

stores.ebay.co.uk/shineukcharity 23

A weekend residential for families with a child

Shine’s Lifelong Opportunities Programme 2014

Places are limited so please register your interest as soon as possible.

Priority will be given to those who have not attended previously.

£160per

family

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For an application form contact: Joan or Denise, Shine, 64 Bagley Lane, FarsleyT: 0113 255 6767 e limited so please rPlaces ar

Priority will be given to those who have not attended pr

Closing date for applications 10th January 2014

For an application form contact: Joan or Denise, , Leeds LS28 5L, 64 Bagley Lane, Farsley

: 0113 255 6767 Eest as soon as possible. egister your intere limited so please r

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For an application form contact: Joan or Denise,

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201417-19th Oct 2014Second event for 6-11 ye

Info to follow Jan 2014

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Second event for 6-11 year olds

Info to follow Jan 2014

Shine Christmas Cards

Order your Shine Christmas Cards on ebay: stores.ebay.co.uk/shineukcharity Call T: 01733 421310 or E: [email protected]

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Bright Doves (15cmx15cm)

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The Christmas Gang

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The Christmas Gang (21cmx10cm)

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SAMC Meeting August 2013The SAMC met at Shine HQon Saturday 3rd August 2013,welcoming Shine CEO JackieBland and David Isom,Development Manager forNational HQ Services.Apologies were received fromMembership DevelopmentOfficer, Gobi Ranganthan,and Amar Dugal, SAMCmember.

DevelopmentsJackie Bland is still trying tomake progress with Sir DavidNicholson about thespecialised commissioning forpeople with spina bifida. Aftersome SAMC members hadwritten to their local MPs, a few received replies. TheSAMC would encourage all members to write to theirlocal MP as the more people do this, the more it willhelp Shine and its members’ voices to be heard.

The SAMC visited the SIA (Spinal InjuriesAssociation), Old Brook, Milton Keynes, on Monday7th October. A full report on the visit and what wasachieved and will be in the next issue of Together.

EventsI was fortunate to attend the Time to Shineadventure – a wonderful event held at the PioneerCentre in Kidderminster from Monday 12th toThursday 15th August. This event was attendedby many of the younger members, with agesranging from 12-16 years. Every one of the youngpeople enjoyed all the activities which includedabseiling, fencing, birds of prey, and many others;and some fun was had on the night of the campfire. For me, it was so nice to see all the youngpeople making friends and most of all, havingsome fab fun time. I can’t wait for the next one –you can count me in, guys!

SAMC Chair and Vice ChairAn election was held at themeeting in August and asfrom January 2014, there willbe a new chair and vice chairin place at the SAMC. Therewas one applicant for thechair position, that beingPaul Manning, and one forthe vice chair, Lisa Cain.Therefore Paul and Lisahave taken up theirrespective positions andthese posts will run for 3years.

Potential new SAMC membersThe SAMC are activelyrecruiting young Shine

members, who might consider putting themselvesforward to be part of the SAMC. So, if you are 16years or over and you would like to find out more onhow you can get involved, why not contact myselfand I will be happy to advise regarding what isrequired and how to go about it.

SAMC update

SAMC

24 www.shine.org.uk/SAMC

Hello and welcome to everyone with an update on all the latest news from the SAMC.

Finally…The SAMC are here for you, the members, andwe would like to hear from anyone, whether itis something you would just like to know ormaybe something you would like the SAMC tobe doing. Please do not hesitate to makecontact using the details below.

Thank you,Michael BerginCommunications Officer, SAMCE: [email protected]

The SAMC are here foryou, the members...


We have more than 160 members now. If you areaged 11-14 with spina bifida and/orhydrocephalus and would like to join, email us for a membership form. (You are alsowelcome to join if you are a bit older or youngertoo – our oldest member is 17 years old…!)

Since the last edition of Together, our twocompetition winners, Rosie and Charlotte, haveenjoyed their trip to Britschool. They learned how aperforming arts school really works (and yes…youstill have to do your GCSEs!). A club meeting washeld at the ‘Time to Shine’ residential event, where15 young people told us exactly what they wantfrom the club. We have a fantastic trip to CadburyWorld coming up on December 14th and the thirdThis is Me newsletter has just landed on members’doormats!

URGENT REQUIREMENT –We know you are often askedto think about your CVs as youapproach GCSE time. We havea really good opportunity for 2young people aged 15+ to joinour Shine ‘Members Council’. Ifyou join, you will help influencethe charity, you will learn abouthow the charity works, and youwill get excellent experience for your CV that willhelp you later in your working life. We will giveyou all the support you need to fulfil the role, so ifyou think you are responsible, good at bothlistening and talking, and able to come to three or four meetings a year – then please email E: [email protected] to find out more.

The This is Me club continues to grow!

www.thisisme.org.uk 25

Celebrating success

You may nothave heard ofthe charityAttitude isEverything, butthere are95,000Facebook‘Likers’ whohave, and we

think that Shine members shouldalso know about the great work ofthis organisation and their recentlyhonoured CEO, Suzanne Bull.

The purpose of Attitude isEverything is to support the musicindustry to make live musicvenues and festivals moreaccessible. Venue managers andevent organisers are encouragedto go beyond the legal obligationsset out in The Equality Act andimplement Best Practice,providing a fair and equal serviceto their Deaf and disabled

customers, artists and employees.

Since the launch of a pilot projectin 2000, Suzanne Bull has led theorganisation to become a fullyindependent charity and a part ofArts Council England’s NationalPortfolio of Organisations.

Earlier this year, Suzanne wasawarded the MBE for services tomusic, the arts and disabledpeople, an achievement for whicheveryone at Shine offers a huge‘Congratulations!’

Thirteen years ago, Suzanne setup Attitude is Everything tochallenge the music industry toimprove their access to Deaf anddisabled audiences, artists andemployees. The organisation has

since overseen more than 70venues and festivals signing upto a Charter of Best Practice,thousands trained in disabilityequality, and a huge increase inthe numbers of Deaf anddisabled people accessing livemusic events.

Reflecting on the impact of herwork, Suzanne says: ‘My ultimategoal is for Deaf and disabledpeople to be able to attend, workor perform at any event that theywish. It’s a utopian view, I know,but this is genuinely because Idon’t understand why thereshould be any barriers to this,attitudinal or physical: musicwithout barriers.’

To find out more, or to sign up to be a ‘Mystery Shopper’, please visit W: www.attitudeiseverything.org.ukor email Mandi E: [email protected]

... but receiving an MBE is nice too!Attitude is Everything


Phew! It's nice to be able to sit down for a fewminutes whilst I write this – I have been such abusy bear recently! Everyone here at Shine hasbeen getting ready for Spina Bifida andHydrocephalus Awareness Week. This year wasamazing as members and fundraisers really gotbehind the initiative. Hannah has received overfour times the amount of enquiries as last year! I'mreally looking forward to sharing with you howmuch we have raised in the next issue! By the timeyou read this we will have had Awareness Week,so thank you so much for all of your efforts!I have been up and down the country in the pastfew weeks supporting Shine events. One of thehighlights was going to Karina's Masquerade Ball;it was so much fun and they raised a phenomenalamount of money for Shine.

It's not all been partying though as I've beenworking hard fundraising too. On the 13th OctoberI completed the Great Eastern Fun Run. The rainpoured down, but it was still so much fun catchingup with our dedicated member families, the Bells

and Doveys, and we raised lots of money too!One more bit of exciting news is the smart peopleat Shine have started making children's T-shirts,with a picture of me on the back! So now I'm evenmore famous! It's a great way to let people knowabout Shine and hydrocephalus. They cost £6.50and are available from the Shine eBay shop.Remember, be brilliant!

Supporting Shine

26 C facebook.com/ShineBennyBear

Shine Supporters is the simplest way to getinvolved with Shine and give via a simple one-offdonation. We have a number of different ways thatyou can get involved, whether it is as an individualor as a larger organisation or company.

Friend: give £25 a year and receive a Supportercertificate, a selection of Shine merchandise, aBenny Bear cuddly toy, and a quarterly copy ofTogether magazine, to keep up to date witheverything that is happening in the Shinecommunity.

Supporter: as a supporter you give £75 for theyear and in return we send everything included inthe Friend package with the addition of more Shinegoods including a polo shirt and baseball cap.

Corporate Partner:as a corporate partnerwho contributes £250per year, you willreceive a selection ofour merchandise, in addition to this yourorganisation will benefit from a ‘Thank You’ featurein Together magazine, and a logo on our foyer-based Partner Banner.

Corporate Sponsor: at £2,500 a year theCorporate Sponsor is our premium Supporterpackage. This opportunity offers all the greatbenefits of the Partner programme with theaddition of a visit from a Shine motivationalspeaker and high-profile sponsorships of Together magazine.

Are you a Supporter?

Busy, busy Bear!


Events information

www.shinecharity.org.uk/events 27

A Pioneering Generation

Conference to include:

Closing date: 10th January 2014

A P i o

o n e e r i n g

g G e n e r a

a t i o n

A P i o

o n e e r i n g

g G e n e r a

a t i o n

, r r,

Great news! We have so manygreat events happening throughoutthe Shine community that we don’thave enough space to write aboutthem all in Together.

To find out the date and time of your next support group or Shinesocial function, please contact Shine Head Office on T: 01733 555988

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

shinecharity.org.uk/events

Events Events


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together issue 11

News & Politics

spina bifida

shine christmas

application

chairmans

wear yellow

christmas

spina bifida

tom scott