together - issue 8

Grand Prize Draw 2013 Award Winners Latest News

Amy’s songSmile setto ShineNew SAMCannounced

Issue 8

SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 2

Title: First name:

Surname:

Address:

Town/City: Postcode:

Email: Telephone:

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RATED

DISCREET BY

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1 Results from SpeediCath Compact Male pre-evaluation, Nov. 2010 to Dec. 2010.

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 (including details of the products you have purchased from us) to carefully selected third parties who provide services to us and/or if required by law. By submitting your 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 appropriate box(es) below and returning the information to us. please do not contact me by telephone please do not contact me by post please do not contact me by email

Please send me samples of SpeediCath Compact Male

SCCM 11

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people

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The Coloplast logo is a registered trademark of Coloplast A/S. © 2011-11 All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

Coloplast Limited

First Floor, Nene Hall

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Peterborough

PE2 6FX

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Current Catheter: size:

“This has changed my life completely” Dan, SpeediCath® Compact Male user, UK

View video

RATED

DISCREET BY

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1 Results from SpeediCath Compact Male pre-evaluation, Nov. 2010 to Dec. 2010.


Welcome toTogether

3

CONTENTSP4 News

P8 Honours and changes

P12 Amy’s song Smile

p16 Grand Prize Draw

P18 Bullens success

P20 Shine’s new SAMC

P24 Shine NI

P26 SAMC news

Submission dates forSummer edition• Register of interest to submit:

7th March 2013• Final date for submissions:

10th April 2013• Publication date:

30th April 2013

Together Editor: Tom ScottDeputy Editor: Gail Howard

All enquiries and comments to:Together Shine, 42 Park Road,Peterborough, PE1 2UQTelephone: 01733 555988Textphone service: 01733 [email protected]

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

… that 2013 is goingto be a bumper year!

If this edition ofTogether magazineis a reflection of theyear to come thenwe are in for a greattime in the Shinecommunity.

We continue to be blown away by the generosity ofour fundraisers, without whom none of our workwould be possible. This includes another generouscheque for £10,000 from the Royal Pigeon RacingAssociation and news of £10,000 raised throughWear Yellow and Shine events during the firstSpina bifida and Hydrocephalus Awareness Week.

In our feature interview we meet the amazing AmyBurns, who has recorded her own song and willbe fundraising for Shine over the coming weeks.

The Grand Prize Draw this year is stacked fullof amazing prizes, be sure to sell your ticketbooklet enclosed and let us know if you needmore!

We also have all the in-depth information andadvice from our professional staff, sharing theirknowledge and expertise in the hope that you canbenefit.

As usual, I would encourage you to get in touchand let us know what you like, what you want tosee more of, and to share your news and photoswith us. I look forward to hearing from you soon!

Together Editor

A little birdietold me…

Cover photo: Amy and Erin Burns. Photo: Tom Scott


News

4

We continue to go from strength to strength on oursocial media work here at Shine. We currentlyhave 3400 Likes on Facebook and 12600Followers on Twitter. We also have thousands ofviews on our YouTube films. We are seeing greatinteraction between members, fundraisers, andcampaign contacts through all our online media.To get involved please see:C Facebook: facebook.com/shineUKcharityM Twitter: @shineUKcharitywYouTube: youtube.com/shineUKcharity

If you would like to find out more please emailDarren Fower – [email protected]

Shine staff newsMonica Evans and Andrew Ellis have left Shine fornew ventures, Clara Gill replaces Andrew in theMarketing and Events Team. Bill Manwaring hasjoined the Shine Northern Ireland team as aFundraiser. Katie Horn is our new Charity ShopAssistant based in our Chichester Shop, andChristine Cunningham is our new Support &Development Worker for the London & South Region.

Social Media

Obituary Professor John ScottIt is with great sadness thatwe share the news of thedeath on 29th December2012 of Professor John Scott.

Prof. Scott was one of Irelandʼs mostaccomplished scientists and was Professor ofBiochemistry, a Senior Fellow of Trinity College,and a member of the Royal Irish Academy. Hewas internationally recognised, winningnumerous honours including being the first non-American to be awarded the Lederle Award fromthe American Society of Nutritional Science.

The impact of his lifetime of pioneering work inthe field of folic acid, B12, and Neural TubeDefects is incalculable.

Prof. Scott shared a long relationship with ourorganisation. Between 1999 and 2003 ASBAHworked with Prof. Scott and Prof. John Burn(Newcastle University), on a large-scaleresearch study into the genetics of neural tubedefects in the UK and Ireland. Over the yearshe was involved in many ASBAH/Shinemeetings, conferences and symposiums,speaking on the issues of folic acid and in latteryears, B12. In 2002, he was a keynote speakerat a reception held at the House of Commons topromote the benefits of folic acid and flourfortification.

Prof. Scott remained a committed supporter ofour work until the end, producing a report forShine on the additional benefits of takingvitamin B12 in conjunction with folic acid to helpprevent more Neural Tube Defects. Just a fewmonths prior to his death Prof. Scott hadplanned to present his report at Shineʼs pressconference in October 2012 and was greatlydisappointed when illness prevented him fromdoing so.

Professor Scott will be sorely missed by hisfamily, friends and colleagues.


5

Shineʼs Silver Dreams Project for those aged 50plus is now up and running. We have recruited 10core volunteers from Shineʼs membership in thisage group who have skills incharity governance, eventsmanagement, public speaking,social work, campaigning,website and social mediadevelopment, fundraising,disability awarenesss training,crafting, and creative writing toname just a few.

Over 70 members have said theywould like to get involved with theProject in some way and over the next 6 monthswe hope to launch a couple of tele-friendshipgroups; a new volunteering scheme with activities

that people can do from home, including acrafting group; and a national event towards theend of the year, celebrating the achievements

and highlighting the issues thatolder people with spina bifidaand/or hydrocephalus face.

We have already established asuccessful online support groupon Facebook called In TouchOver 50 with members enjoyinglively discussions, sharinginformation, and supporting eachother. So far a couple of people

have also told us that they wouldlike to try the internet and we are helping them dothis as part of the Project. It is going to be anexciting year!

The Silver Dreams Teamis up and running!

For more information contact the Project Coordinator: Angie Coster T: 01308 426372 or E:[email protected] To follow us see: W: shinesilverdreams.wordpress.com

...we hope to launch acouple of tele-friendshipgroups; a new volunteeringscheme with activities that people can do fromhome, including a craftinggroup; and a national event towards the end ofthe year...

We have been hearing from some members whoexperience intracranial hypertension (IH) whowould like the condition to feature more inTogether. This is something we are workingtowards as we seek to also work in partnershipwith IIH UK in the future – for more see iih.org.uk

In this edition of Together we are delighted toannounce the arrival of A Good Helping, acelebrity recipe book which has been collated by Shine member, Rebecca Morris.

Rebecca, who has IH, has produced a beautifulrecipe book featuring over 30 delicious mealsand desserts from top celebrities including sports stars, professional chefs, actors, andtelevision personalities.

To read more about the project please seeshinecharity.org.uk/cookbook

Shine Recipe Book

175g (6oz) self-raising flour

1 level tsp baking powder

175g (6oz) butter, at room temperature, plus

extra for greasing

175g (6oz) caster sugar

Grated zest of 1 orange or 1 lemon

A few drops of vanilla essence

3 eggs, at room temperature

Milk, to loosen

Icing sugar, for dusting

For the filling

150ml (5fl oz) double cream

200g (7oz) black cherry jam

SERVES 8

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News

To order your copy for just£12.50 (inc p&p) please visit eBay.co.uk/ShineUKCharity or T: 01733 421307


Good news formembers who havecurrent awards forDisability LivingAllowance (DLA)!

Direct payments – aWelsh Assembly memberspeaks out in support!

News

6

I was pleased to representShine at a Medtronicsconference recently as theyhad approached the charityasking for someone to talk totheir staff about the benefits ofa shunt, one of the productswhich they make. The purposeis that everyone in thecompany appreciates thevalue of the work they do and

how their contribution can insome way affect peopleʼs lives.

I was interviewed by PaddyHaycocks in a ʻParkinson-styleinterviewʼ for fifteen minutesand remarks afterwardssuggested that my commentshad been appreciated. Inreturn, my personal assistantand I enjoyed an overnight

stay at an hotel at Heathrow,where we were royally treatedand enjoyed Limousine travelboth ways. Not bad eh?

John Richards

John’s in the hot seat!

Direct payments arepayments from thelocal council forpeople who havebeen assessed asneeding help fromsocial services, andwho would like toarrange and pay fortheir own care andsupport services.These payments aremade directly to thedisabled person (or tosomeone acting ontheir behalf), toarrange their owncare package. Direct payments offer: • Choice: allowing

people to makemore of thedecisions whichaffect their lives.

• Control: If a personreceives DirectPayments they can

decide how theirneeds will be met,by whom, and atwhat time.

• Independence:allowing for carethat is flexible andencouragesindependence.

Despite this, it seemsas if not many peoplein Wales, who maybenefit from directpayments, actuallyaccess them.

Welsh ConservativeMember for NorthWales, MarkIsherwood, wants tosee widerdevelopment of thedirect paymentscheme acrossWales. His views havebeen informed by ʻthe

amount of people whohave approached himwith concerns abouttheir care packages.ʼ

Mark Isherwood willintroduce a privatemembers bill onreforming directpayments in Wales,moving from thecurrent ʻopt-inʼapproach to onewhere individuals willʻopt-outʼ.

Shine Cymru hasresponded to arequest forinformation on thisissue and will keepmembers informed ofdevelopments. Forfurther information ondirect payments,contact your localSocial Services office.

Shine has received manyqueries about the introductionof Personal IndependencePayments (PIP) and re-assessments for memberswho have been awardedlifetime or indefinite awardsas the plan seemed to be thateveryone would be re-assessed from 2013.

Shine now understands thatthis has changed and thatworking-age disabled peoplewith a lifetime or indefiniteDLA award will now not bereassessed until October2015 at the earliest, sixmonths after the next generalelection.

For further information orquestions on welfare reform,please contact your localSupport and DevelopmentWorker.


News

7

Act nowon PIPproposalBy Shine memberPam Stock

As a 54 year old female withspina bifida and significantmobility issues, I am veryconcerned about the planneddistance reduction from 50m to20m for the Mobility assessmentof the new PersonalIndependence Payment (PIP)which replaces Disability LivingAllowance (DLA) in April this year.

This change will mean that a lotof people with very significantdifficulty in moving about will failto qualify for the higher rate ofthe component and so will notqualify for vehicles or othermobility aids under the Motabilityscheme.

It will also mean that many morepeople who currently qualify forthe Motability scheme undercurrent DLA rules, will lose thehigher rate on assessment forthe new benefit, and will haveany existing Motability vehicle ormobility aid removed.

Disability representative groupsincluding Shine need thesupport of their membership in

order to improve publicawareness of the issues facing disabled people, so that they can lobby effectively to have thischange reversed. If you wouldlike to add your voice to theprotest please visit W: wearespartacus.org.uk where you can find moreinformation on how you can help as an individual, and also linksto various letter templates youcan use to write to people suchas Disability Rights UK, or yourlocal MP.

You can also visit the Department for work andPensions (DWP) at W:dwp.gov.uk/pip where you willfind links to the full governmentresponse to the PIPconsultation, including the finaldraft of the assessment criteria –there is also a link to a Q&A ofcommonly asked questions as well as a ʻmythbusterʼ ofmisconceptions regarding PIP.

This change will mean a loss ofsupport and independence forsome of the most severelydisabled among us, so pleasedo whatever you can to helpbefore it’s too late, and theproposals pass into law.

Volunteer of the Year Award A day I will never forget

We arrived at the Telegraph building where we were met by theManagerial Editor who provided us with a chauffeur-driven carfor an exciting two-hour sight seeing tour of the capital city,where we got to see all the sights London has to offer. Later we were taken to the fabulous Telegraph offices and intothe theatre room for champagne and canapés – too posh forthis scouse lad! The room was filled with very distinguishedpeople including General Lord Datton, former boss of the BritishArmy, Baroness Campbell, Katherine Grainger MBE, and IanMacGregor, Editor of the Sunday Telegraph, amongst others.

Each winner was invited to the stage whilst a brief insight intotheir voluntary work was read aloud. My nerves were shatteredby the prospect of going on stage. Finally General Lord Dattoninvited me up and I am not too clear about what I actually said,but I brought both my wife and daughter to tears. After theAwards we went to a very lavish buffet. My daughter Sammyspoke to Katherine Grainger and was able to wear Katherineʼsgold medal! We left the Telegraph Offices feeling like royalty aswe had been treated like Kings and Queens. Carl Eaton, Shine Member

please do whatever you can tohelp before it’s too late, andthe proposals pass into law.


Members from all over thecountry came to vote onproposals which included givingall Shine members over the ageof 16 a vote at future AGMs, androtation of the Board of Directorswhich will allow more people theopportunity of serving on thecharityʼs governing body.

If you are a Together readerand want to check whetheryou are a Shine member or notplease contact MaureenJobson on 01733 555988.Anyone with spina bifida,members of their family, andcarers and professionals involvedin this area of work can nowqualify to be full voting membersof Shine, but to get a vote youmust be registered in your ownright.

With so many peoplecontributing so much to Shine,

and achieving so much in theirlives, selecting the winners forthe third year of Shine Awardswas a tough challenge. Thanksto everyone who nominated afriend, family member orprofessional for an award – allwere very deservingsuggestions. Below are the2012 winners:

Shine Volunteer of the Year –Lorraine Watson. Shinedirector and tireless volunteerLorraine was honoured for herhuge contribution to the Shinecommunity.

Shine Young Fundraisers ofthe Year – Upton-By-ChesterHigh School. Students at thisamazing school raised a totalof £4700 for Shine with theirinteresting and originalfundraising activities.

Shine Fundraiser of the Year– Charlie Miller. Charlie hasinspired us all by taking on anincredible range of fundraisingchallenges this year, inmemory of her son George.

Shine Young Achiever –Rebecca Morris, who hasIntracranial Hypertension wasthe creator and producer of AGood Helping the brilliantcelebrity recipe book which iscurrently raising funds andawareness for Shine.

Shine Professional of theYear – Dr Richard Morgan,founder of the Chelsea andWestminster Clinic for peoplewith spina bifida andhydrocephalus, was honouredthis year for his pioneeringwork in providing the best forpeople with both conditions.

AGM & Award Winners

8

Honours and changesat Shine’s AGMShine's AGM, held on 29th November, was a historic and happy occasion, with a new constitutionbeing voted in and deserving winners being presented with their coveted Shine Awards.

Lorraine Watson Rebecca MorrisCharlie Miller

Upton-By-ChesterHigh School

Dr Richard M


Information

9

New NHS arrangements need toinclude spina bifidaShine has raised concerns withthe NHS SpecialisedCommissioning Board that thespecialist needs of people withspina bifida have not beenaccounted for.

Last year, under widespreadchanges to the NHS, a processwas launched to identifyconditions which should becommissioned nationally and forwhich specialised servicesshould be provided. Conditionssuch as cleft lip and palate andtraumatic spinal injury are

included within specialisedcommissioning and people withthese conditions can expectspecialised services atspecialised clinics or Spinal InjuryCentres.

However, despite repeatedquestions, Shine has received noassurance that spina bifida hasbeen identified as requiringspecialised commissioning and itlooks increasingly likely, for adultsat least, that no new specialisedarrangements will be madeavailable. This is despiterepeated calls for improvedservices for adults with spinabifida, including multi-disciplinaryclinics where people are treatedas a ʻwhole personʼ rather thanbeing ʻdivided upʼ into the range

of different issues which arisefrom spina bifida.

Shine Chief Executive JackieBland has been promised ameeting with NHS commissionersto ʻexplain why these conditionshave not been includedʼ but so farno firm arrangements have yetbeen offered.

As things stand, for now, spinabifida will remain a conditionwhere services and treatmentwill be decided andcommissioned at local level,

where new local Health and WellBeing Boards will have greaterpowers to decide what the healthpriorities for their area will be.This is in contrast to services forpeople who sustain a seriousspinal injury after birth, where ahigh level of specialist service isavailable, according to nationallyagreed specifications.

Shine is continuing to developwork in this area to bring aboutimprovement. Feedback frommembers, direct to Jackie Bland,is welcome –

[email protected]

Raising the issue with MPs willalso be helpful to this work.

The first ever John andLucille van Geest Award foroutstanding contribution tothe Shine community went toLinda Corbett of ShineSurrey for her longstandingsupport for local associationsand her outstanding exampleof making the most of lifewhilst living with spina bifida.

And finally, the Shine LifetimeContribution Award went toShineʼs former PrincipalHealth Adviser, RosemaryBatchelor who retired lastJuly after a quarter century ofservice to Shineʼs members.Many of todayʼs adult Shinemembers were supported byRosemary as babies and hercontribution to the world ofspina bifida andhydrocephalus both nationallyand internationally has beenimmense.

Many congratulations to allour winners!

As things stand, for now, spina bifida will remain acondition where services and treatment will be decided and commissioned at local level...

d MorganLinda Corbett

Rosemary Batchelor


Go Folic!

10

This year got off to a flying startwhen we were asked to take part ina Radio 5Live show, reflecting on thebiggest medical research successesof the last 100 years. It was amazingthat folic acid was included alongsidesuch discoveries as antibiotics,organ transplants and MRI scanning,and just goes to show thesignificance that scientists place inthe discovery that folic acid preventsNTDs.

Shine Mum, Josephine Wilding,bravely agreed to chat live on airabout the importance of taking folicacid before pregnancy anddescribed her two beautifuldaughters, Amelia and Alaina(pictured here during Spina Bifidaand Hydrocephalus AwarenessWeek 2012), the youngest of whom has spina bifida.Rarely do we get such exposure, and Josephineproved an amazing ambassador for Go Folic!

It seems hard to believe more than 20 years after theground-breaking Medical Research Council studyproved that folic acid helps reduce the risk of NTDs

by up to 72%, that we are still tryingto get this simple but vital messageacross to women.

So, why is it so difficult? … Unplanned pregnancies, a lack ofavailable information and education,an array of conflicting informationonline, and a lack of promotion byhealthcare professionals, to namebut a few. Not to mention the manywomen who do know about folicacid, but still see it as an ʻoptionalʼthing to take whilst theyʼre pregnantthatʼs ʻgood for the babyʼ, ratherthan something that is essentialbefore and during pregnancy, tohelp prevent serious consequences.

As we progress, I would like to say amassive thank you to everyone who

has shown support over the past year, throughsharing your stories, distributing leaflets andpostcards, sharing posts on Facebook or retweeting(and of course not forgetting our fantastic sponsorsVitabiotics and Laneʼs Health). Every little bit helpsand we couldnʼt do it without you.Martine Austin, Health Campaigns Officer

Go Folic!

Amelia and AlainaDuring Spina Bifidaand Hydrocephalus

Awareness Week 2012

Having a fall isnʼt an inevitable part of getting older, oras a result of having a disability.

Falls are frightening, embarrassing, and can beserious. They could mean a long hospital stay, loss ofindependence, decreased confidence with walking ortransfers, feeling safer indoors and refusing to go out.The effects are multiple.

Here are some things you could do if you have a fall,or feel you are more at risk.

• Tell somebody. Your GP should be able to refer youto somebody who can help. Ask if there is a FallsService in your area for assessment

• Try to work out if there is somewhere in particular you are falling, or something in particular you aredoing. Your local Occupational Therapy service willbe able to help with environmental factors such asgrab-rails, or just general advice in terms of things likeloose rugs, uneven paving, emergency lifelines, etc.

• See an optician if you feel it might be related to youreyesight. Some people notice an increase in balance

Striking the right balance

If any other parents are interested in helping Go Folic! by sharing their story, please contact me on T: 01733 421349 E: [email protected]

or message me on Facebook or Twitter @martineaustin


11

Cerebro-Spinal Fluid By Gill Yaz, Health Development Manager

Health

problems when they have a new pair of glasses• Are you rushing and falling as a result? Unfortunately,

rushing to the toilet, and going to the toilet during thenight, can cause people to fall. A small plug in night-light may help, but also see your GP/ContinenceAdvisor if necessary

• Be aware of your footwear – slippers can sometimescause falls

• See your local Physiotherapist who can carry out anassessment of your walking and discuss anyappropriate walking equipment that might help

• Are you falling or losing consciousness? Please speak to your GP or consultant if you need to

• Changes in your blood pressure can lead to feelingdizzy and falling. Again, see your GP or district nurse if you think this might be happening. Peopleoften notice this when standing up from sitting or lying down

• Being overweight can have a big effect on mobility and falls.

Please let me know if you would like more helpregarding problems with balance and falls. StaySafe!

Emma Enfield, Shine’s Occupational TherapistE: [email protected]

When I first started working for Shine, not much wasknown about cerebro-spinal fluid (CSF), the fluid in thehead which becomes trapped, causing hydrocephalus.I was originally told that it contained a bit of salt, a bit ofsugar, and its main function was to cushion the brainduring impact. How things have changed! Scientistsare beginning to reveal some fascinating facts, and areworking hard to find out just what CSF does. Thetissue that produces CSF, the choroid plexus, has avery rich blood supply, and pumps vitamins and othernutrients into the CSF, which feeds the brain tissue. Itthen collects waste chemicals and returns them to thebloodstream for disposal. We know that conditionswhere CSF flow is reduced, for example normalpressure hydrocephalus in which toxins build up in thebrain, can lead to dementia.

In the developing brain of unborn babies, the CSFcontains growth factors which tell the brain cells todivide and migrate to the correct areas of the brain. DrJaleel Miyan, of Manchester, found that removing theCSF in rats with congenital hydrocephalus, andputting it in rats without hydrocephalus stopped thebrain cells from dividing and moving to form the usualstructured layers in the previously unaffected rats.When he reversed the process, the cells began todivide again. Different growth factors are added to theCSF at different points in the pathway around thehead, so the effects on brain development depend onthe location where the CSF becomes blocked. Inopen forms of spina bifida, CSF flows into the sac ofthe spina bifida lesion, instead of onto the outside

surface of the brain, where it should be absorbed.Vital chemicals fail to reach the outside of the brain,and the development of some of the uppermostlayers may be thinner than usual, accounting forsome of the cognitive issues experienced by somepeople with spina bifida.

CSF is produced in pulses, each pulse creating a littlewave of pressure. Scientists have found that the highpressure wave from CSF coincides with the lowpressure phase of the blood being pumped into thehead by arteries, and that these two waves canceleach other out to create a constant pressure. It wouldbe uncomfortable if we could feel every pulse of bloodentering our brain, and some scientists believe thatsome people with hydrocephalus have CSF wavesout of synch with their blood pulse.

So CSF is far more important than we thought,controlling our brainʼs environment, nourishing andcleansing it, while equalising the pressure in ourheads. Iʼm sometimes asked ʻwhy canʼt the surgeonjust remove the choroid plexus to reduce the CSF,instead of diverting it with a shunt or ETV?ʼ Thissurgery is occasionally carried out in the UK, forpeople who produce excessive CSF, but rarely forpeople who have the usual quantity of fluid; we justdonʼt know what the long term effects might be.

What will they discover next? Watch this space!

E: [email protected]


Late last year I received a phonecall from a dance instructor whowas calling to tell me about aninspirational girl called Amy Burns.

As the director of the dance andmovement workshop group, LittleMovers, Melanie Buck has metthousands of children, but, asshe rightly says, ʻThere isno one quite like Amy.ʼ

Despite the New Yearsnow, I made the visit toGateshead to meet withAmy, her Mum Kate,Melanie, and Louise fromGateshead CountyCouncil at Amyʼs school,St. Josephʼs RC PrimarySchool.

Amy was born with spina bifidaand has overcome many difficultexperiences including operationsto close over hermyelomeningocele, a cystremoval, and the ACE procedure.However, in the face of thesechallenges Amy has only two

things on her mind … singing anddancing!

Mel explains that in the beginningshe wasnʼt sure how having Amyin the class would be, ʻI rememberAmyʼs Mam calling me and askingif it would be alright for Amy tocome to Little Movers, and to be

honest I didnʼt know anythingabout spina bifida. But, after wespoke about it, we decided to seehow it went and its been amazing.ʼThis isnʼt to say that there werenʼtconcerns. Although Amy has ahigh level of mobility there are stillinstances where she struggles with

her balance, and on longerjourneys Amy uses a wheelchair.Mel remembers being verycautious in the beginning, ʻIn thewarm-up, when the children runaround the room, I would followAmy with my arms hoveringaround her, I didnʼt want her to gethurt. But now she is fine, and if she

falls she gets back up andcarries on with the warm up,its not a bother to her.ʼ

This protectiveness issomething Amyʼs Mum,Kate, identifies with, ʻAmywas our first child and forthe first 12 months we werejust scared! I think mostparents feel something likethis, but with Amyʼs spinabifida we were extra

cautious.ʼ The familyʼs first contactwith Shine came around this timewhen Amy was having kidneyproblems at 14 months, Kate said,ʻOur worker was great in helpingus get the right care for Amy.ʼ

As Amy grew it was clear that her

Feature

12

Making a song anddance about it!

In the coming weeksAmy will be recordinga song in aprofessional studioand it is a song thatvery much reflects herwonderful personality.

Words and photos by Tom Scott


Feature

13

character was going to be theoverriding factor in how shecoped with her spina bifida.Parents, Kate and Michael,recognised this and are fullybehind anything Amy wants to try.Amy may only be 7 but she hasalready taken part in horse riding,gymnastics, tennis, andtrampolining. However, it issinging and dancing that hasreally captured her imagination.

In the coming weeks Amy will berecording a song in aprofessional studio and it is asong that very much reflects herwonderful personality. As a resultof the special relationship Amyhas with her dance group, herclass mates were asked to writedown words that describe theirfriend. Unsurprisingly the listincluded words such as love,strong, proud, and happy. Theteam at Little Movers then turnedthe selection into the song Smileand Amy has used her vocaltalent to bring the project to life.

This song project, and indeed thestory of Amyʼs life so far, is verymuch one of support leading totriumph. Amyʼs family are alwaysthere for her, including youngersister Erin, with whom Amy isvery close. The Little Moversgroup have been there as shehas developed into a confidentyoung performer. In addition tothis, Amyʼs school, under the veryprogressive support of HeadTeacher Mr Hattam, haveaccommodated her in every waythey can within the constraints ofa system which makes SpecialNeeds support increasinglydifficult to access.

The concern of everyoneinvolved here is that Amy is

given every opportunity todiscover who she is according tothe enthusiasm that exudes fromher unique personality. Amy is agirl who isnʼt phased by hercondition and seizes life withouteven thinking about it; it this facetwhich lies behind her infectioussmile and draws you to her.

The time with Amy and thoseclose to her was a real privilege,and I couldnʼt end this articlewithout acknowledging Amyʼsclosest friend, Little Winnie. Little Winnie is a pink Winne-the-Pooh

who has been througheverything with Amy … and Imean everything! From hospitalappointments to bowelwashouts, Little Winnie has beenthere with Amy, her comfortduring the most testing times.

Iʼm sure Little Winnie will bethere with Amy over the comingmonths as she promotes thesales of the her new song toraise money for Shine – maybeshe can meet Benny and sharesome stories too!

To get your copy of Smile please call T: 01733 421307 or visit the Shine eBay shop here

W: stores.ebay.co.uk/ShineUKCharity


A big ʻHelloʼ and ʻHappy New Yearʼ to you all inwhat I hope will be another great year for everyoneconnected with Shine.

With 2012 being my first full calendar year asMembership Development Officer, it was both anexciting and hectic year – with a steep learningcurve for me in the process. But itʼs been a greatexperience and Iʼm already looking forward to2013 with great anticipation.

However, before I look forward to the year ahead,letʼs take a quick look back at how 2012 ended.As I mentioned in the last edition of Together,Darren ʻThe Powerʼ Fower and I took part in thePerkins Great Eastern Run. When I last wrote, theamount raised was unknown, but Iʼm pleased tosay we reached a grand total of £1019 – exceedingour £1000 target. It was great to see donations

flooding in even after the event. A massive ʻThankyou!ʼ to those who contributed through text, cash oronline donations … bring on PGER 2013!After the GER (Gobiʼs Exhilarating Roll!) came atrip across the Irish Sea to Northern Ireland where,as well as the 4 Nations Championships in Lisburn,I spent some time with Shine NI members.

To start my trip I met Karen Tilson, whoʼs doingsome challenges of her own and fundraising forShine in the process. A coffee morning followedthe next day in Lisburn with Shine staff as well asmembers Donna and Ryan Green. Then,accompanied by my Mum, Esther, I headed off toDerry to meet more members at the BrunswickMoviebowl.

Over 30 people got together for ten-pin bowling and,after dinner, many stayed to socialise further with a

Gobiʼs gossip

14


15

few games of pool.I also had thepleasure ofmeeting somecoaches andplayers from theNorth West EaglesWheelchairBasketball Team. So hereʼs a big shout out to KeiranDoherty, Elaine Brolly, Conor McGrotty, PerpetuaOʼDriscoll, Steve McCrudden, and also to the GillonFamily, particularly Diane and her daughter Chloe,who completely wiped the floor with me on thebasketball machine! Needless to say, Iʼm seekingrevenge so have a bit of business to sort out there!

It was an absolute pleasure to meet so manymembers and I should give a special mention andthanks to Support and Development Worker, SandraCampbell who arranged the evening and gave myMum and myself a mini tour of Derry City Centre.Both Mum and I were made to feel very welcomethroughout the stay so thank you Shine NI.

Upon returning to England, normal serviceresumed as everyone at Shine HQ started to gearup for Christmas, however I still managed tosqueeze in a final challenge for the year. With all of the events pre and post London 2012,my Challenge Gobi events had been on hold.However I restarted the challenges with somethingnice and simple to ease myself back into it. Nothinglike doing a bit of wheelchair abseiling on the UKʼssteepest Wheelchair accessible abseiling wall!

I was given the opportunity to be a guinea pig atthe So Challenging Ropes Centre at Fairlandʼs

Valley Park, Stevenage. Whenasked if Iʼd be up for trying it, mymind was saying ʻNoʼ, butsomehow my mouth didnʼtengage my brain and said ʻYes!ʼHmmm! Having never doneanything like this, itʼs fair to say Iwas a little apprehensive. Iʼm notreally one for heights anddangling from the side of anabseiling wall on a winterʼs day,so I was definitely out of mycomfort zone. Still, Iʼm aliveand well and writing onceagain!

With all the excitement of theexploits of 2012, I didhowever comeback down toearth with a bump inDecember. As much as

things were going well for me, a few health issuesarose, and troubles with my Mitrofanoff soonreminded me that I am still human. Difficulties withthis resulted in me requiring a Mitrofanoffscopyunder general anaesthetic, so not an ideal end to the year. It could well lead to an interesting and tough year – if thereʼs a Challenge Gobi thatIʼll need to overcome in 2013, then this is right up there!

Despite the hiccup, one of the main focal points for2013 will be making the ʻRise and Shineʼ AdultMembers event at Stoke Mandeville in July a realsuccess. With a number of exhibitors alreadyconfirmed, there should be something foreveryone. However, there is lots of organising todo and Iʼll be working hard to make it a greatexperience for all, ensuring as many members aspossible can come and have a thoroughlyenjoyable and memorable time.

If you are planning on attending, please donʼt forgetto get your applications in, especially if youʼrestaying overnight as onsite accommodation islimited. Iʼm hoping itʼll be an event to remember!So here we are – the end of another column entrydone and out of space! But as always, if you want tokeep up to date with the development of the Shinemembership on a regular basis, follow me onFacebook, and on Twitter with @Gobi_r. See you allsoon! [email protected]

Gobiʼs gossip

Nothing like doing abit of wheelchairabseiling on the UK’s steepest

Wheelchair accessibleabseiling wall!


16

The first Shine Christmas Appealto you, our members, saw a verygenerous contingent donate over£800 during the festive period!

We would like to thank all thosewho gave and we are alreadylooking forward to next yearʼsappeal.

Christmas Appeal

Fundraising news

TICKETS ARE £1 EACH – fill in the details ofthe person buying on one half and return to:Clara Gill, 42 Park Rd, Peterborough PE1 2UQ. If you need to order more tickets please call T: 01733 421307.

The MUST HAVE ticket of 2013 is definitely theone for our amazing Grand Prize Draw. In our3rd year we are aiming to make this the mostsuccessful draw yet!

Please find tickets FOR £1 EACH included withTogether and sell them to your friends,neighbours, and colleagues (don’t forget to buysome for yourself too!). There are fantasticprizes just waiting to be won.

The beautiful SandsResort, Cornwall

Grand Prize DrawTop three prizes

£1500 CASH Apple iPad2 (16GB/WIFI) £500 NEXT Vouchers

You could also win...

A family RETURN ticket for 2 adults & 2children on Eurostar to Paris, Lille or Brussels

A weekend stay for 2 adults and up to 3children (under 14) including breakfast anddinner at the beautiful Sands Resort, Cornwall

A relaxing stay for two at Whittlebury Hall,Northamptonshire for 1 night B&B includingLeisure/Spa facilities

18 holes for four on the Championship Courseat Forest Pines Golf and Country Club in NorthLincolnshire

Two adult tickets to any of the Battle Promsvenues in 2013

Hitachi Projector CPX4 suitable for home oroffice use

The draw is to be held on March 30th 2013.Don’t delay, make your Easter the best everand get your tickets now!


If you want to get involved in your very own Wear Yellow and Shine event, you don’t have to wait until next October, so please contact Hannah on E: [email protected] or T: 01733 421351, for ideas on how your friends, family, school, or work place can hold an event to benefit Shine.

Fundraising News

17

Shine have recently beendonated the fantastic amountof £255 by Hall GreenWaitrose after being nominatedby a local member to benefitfrom their branch CommunityMatters Scheme.

This is a brilliant fundraisinginitiative that many large chainsupermarkets are now startingto introduce in order to givesomething back to themembers of their local

communities that rely oncharitable organisations, orthose who nominate a charitythey have a personalconnection to.

So if you live near, or regularlyshop in a Waitrose, JohnLewis, Asda or any other localstore that may offer a similarcharitable incentive, pleasedonʼt hesitate to nominateShine, as not only does itprovide a fundraising

opportunity, it also gives youthe chance to raise awarenessof spina bifida andhydrocephalus in your localcommunity!

If you would like to discusshow to nominate Shine forone of these schemes, orhave any other similar ideasthat you think would help,please contact the Marketingand Events team for furtherdetails – T: 01733 421351

Last October brought us the firstSpina Bifida and HydrocephalusAwareness Week, and with itShineʼs very first national WearYellow and Shine event.

Schools, nurseries and officesup and down the country tookpart by having dress-down daysand wearing items of yellowclothing, all to help raise moneyand awareness for Shine. Wehad a fantastic response from so

many of you, and raised nearly£10,000 this year from separateevents up and down England,Wales, and Northern Ireland.

Thank you to everyone that tookpart, and particular thanks toeveryone that sent us fantasticphotographs of their events, wereally enjoyed seeing whateveryone had been up to.Hopefully 2013 will see usincrease the number of people

taking part, and we can lookforward to going from strength tostrength with ʻWear Yellow andShineʼ, and build upon thestrong foundations establishedin 2012.

CommunityMatters Scheme

Awareness Week 2012


News

18

Readers may rememberreceiving a competition-surveyfrom Bullens Healthcare lastyear which offered the chance towin a trip to Disney World for afamily of four or £3000 worth ofequipment to the winner. Thesurvey also offered entrants theopportunity to talk to Bullensabout receiving their prescriptionproducts from their freepersonalised on-line service.

Member Steve Leathart fromWisbech was the lucky winnerand chose to have £3000 ofequipment as his prize. We arealso very pleased to learn fromBullens Healthcare that around140 Shine members took upthe opportunity of having theirprescription products deliveredto their door, at no cost tothemselves.

Bullens are happy to talk toanyone about their service atany time. Their personalhealthcare staff are on hand todiscuss your prescription needsand explain how their serviceworks – and remember it is freeto Shine members but Shinestill gets a cash donation fromeach order.

If you use prescription itemsof any sort and would like tofind out more, you will find afreepost reply card with thisissue of Together – just fill itin and send it back. There isno obligation on anyone,Bullens customer care staff willcall you and answer all yourqueries and then it's up to you.Or you can simply contactBullens, saying you have seenthis article in Together, bycalling T: 0800 269327

We hope that this partnershipwill go from strength to strengthand raise even more in 2013. A big thank you to everyonewho used the Bullen HealthcareService and helped us raisethese valuable funds for our work.

Shine raises £4000through Bullenspartnership

If you would like support from Shine as a local association then please call T: 01733 421361

The reason that Shine isso pleased is that 5% ofthe value of each order isdonated to Shine, anarrangement that raised£4000 for Shine in just oversix months. This moneygoes directly into helpingus provide our nationwideservices for members andis highly valued in thesedifficult times.

Shine Associations As the months go by we are seeing a steady increase in the number of localassociations who are changing their name to Shine. So far these include:


NEW 11-14 Club!

19

I think the new club for 11-14 year olds should be called:

ʻThis is Meʼ ʻShine Youthʼ

ʻJust as I amʼ ʻ11-14 No Limitsʼ

ʻShine 11-14ʼ

(Please tick only one box, only one entry per person allowed).

Your name Your age

Your address

First Prize: FREE DAY PASS FOR 2 ADULTS & UP TO 4 CHILDREN TO WOBURN SAFARI PARK! (Valid until 31 October 2013).If you are unable to finance travelling to Woburn and you win first prize, we will arrange for a suitable alternative

Second Prize: £25 Amazon vouchers

Third Prize: £10 Amazon vouchers

Please complete and post this form to ʻShine 11-14ʼ, 42 Park Road, Peterborough, PE1 2UQ. Closing date for entries is 28 February 2013 and the winning name will be announced on 4 March 2013.

ATTENTION ALL 11-14YEAR OLD MEMBERS!

Shine is starting a new network for 11-14 yr oldmembers with SB/H. We have asked youngpeople in this age group what they would likefrom a ‘club’ and they say they want to be broughttogether. Lots of 11-14 year olds said they feellonely or isolated and that it would be great tomeet other teenagers who also have SB/H.

We can help! If you join the club you will getmembership to a new network designed especially

for your age group. You will then get the chance to enter competitions with great prizes, contactother young people like you, read articles on issues that you care about, and go to events where you can meet up with each other.

Itʼs your club, so itʼs up to you to choose the name. Everyone who completes the form below to vote for a name will be entered into a prize draw.

Cut here


New SAMC

20

Shine’s new AdultMembers CouncilappointedNine Shine members havebeen appointed to serve onthe Adult Members Council forthe next three years. Themembers, who all appliedthrough the process describedin the last Together, have beenappointed directly because thenumber of applications wastoo low to allow an election torun; there were nineapplications for 10 places.

Shine HQ Services ManagerDave Isom said that althoughthe number of applications wasdisappointing, he was delightedto welcome some excellent newmembers onto the SAMC, aswell as to welcome back someexperienced members.

“We hope that as the work of thenewly elected SAMC gains ahigher profile, other memberswill come forward whom thegroup can consider co-opting ata later stage” he said. “The

SAMC has had a big influenceon our work since we becameShine, bringing significantissues to the fore. It wasinstrumental in last yearʼs majorhealth survey which will be thesubject of a hard hitting reportthis year.”

The existing Adult MembersCouncil will meet one more timebefore disbanding, and theinduction process for the newSAMC will begin in the Spring.This year the Council is likely tobe considering the impact ofhealth service and benefitchanges on members, as wellas looking at ways of increasingand developing Shineʼsmembership. There is also amajor event for adult membersin July.

Anyone who might have missedthe article in the last Togetherand is interested in the Councilis welcome to contact Dave

Isom on T: 01733 421308.The new Shine Adult MembersCouncil members are:

Lisa Cain (Chair) EssexLisa has spina bifida andhydrocephalus and is also aDirector of Shine. She works forthe London Borough ofRedbridge Blue Badge schemeand is experienced atrepresenting Shine and itsissues nationally andinternationally. Lisa is also akeen skier.

Mike Bergin (Hull)Mike has served both on SAMCand on Your Voice, the body thatexisted before SAMC. He is theCouncilʼs CommunicationsOfficer and represents Shineboth nationally andinternationally at events andconferences. Mike has spinabifida. He has two grown upchildren.


New SAMC

21

Geraint Catherall (Wales)Geraint has hydrocephalus andfrequently speaks at Shineevents explaining his conditionto others. Geraint has workedhard to overcome thechallenges arising from hishydrocephalus, and is keen toshare his experience. Geraint isa keen cyclist and has servedon the committee of his localcycle club for over 15 years andis currently the club captain andrace secretary.

Paul Manning (Wales) Paul has spina bifida andhydrocephalus and is an activerepresentative of Shine Cymru.He is also a Director of Shinerepresenting interests in Wales.Paul volunteers for Mencap andhas a basic understanding ofdeafness and BSL.

Heather Doughty (newmember, Nottingham)Heather is new to the SAMC.She has spina bifida and hasworked for a variety oforganisations of disabledpeople, including IndependentLiving Centres. CurrentlyHeather works for DisabledPeopleʼs Advocacy inNottingham. She is passionateabout equality for disabledpeople and endeavours to be astrong advocate when sheneeds to be.

Jason Merrill (new member,Peterborough)Jason has spina bifida andhydrocephalus and is very activein promoting the rights ofdisabled people at local level. Heis active in his local Phab Cluband has won a trophy for being arole model as a disabled personfor ʻpushing boundariesʼ. Jason

wants to work with Shine tochange the way that disabledpeople are perceived and is keento share his experiences withShine members.

Liz Potts (Cheshire)Liz has spina bifida andhydrocephalus and curr entlyworks for Shine part-time as a

Support and DevelopmentWorker. Liz is married with twogrown up children. She is keen towork towards social change/integration for disabled people,and to continue Shineʼs workseeking a more holistic approachto healthcare for its members.

Amar Dugal (Middlesex)Amar has spina bifida andhydrocephalus and hasrepresented Shine bothnationally and internationally. Healso represents disabled andelderly people at events in hisSikh temple in Shepherds Bush.Amar works in his familyʼsbusinesses and has a goodunderstanding of businessoperations.

Helen Robinson(Northumberland)Helen has spina bifida and hashad ʻ65 years of living with SBʼ.Together with her husband, shehas devoted much of her life tovolunteering for groups whichsupport disabled people,including setting organisationsup from scratch. She has beenpresented to the Queen tohonour her voluntary work. Atthe age of 45 Helen learned toʻsit-skiʼ and still enjoys thishobby now. Helen works for theMinistry of Justice TribunalService and is involved inShineʼs ʻSilver Dreamsʼ Project.

This year theCouncil islikely to beconsideringthe impact ofhealth serviceand benefitchanges onmembers...


Shine Cymru News

22

The WCVA-fundedVolunteer project inWales continues to gofrom strength to strength.Many members acrossWales are gainingexperience and support

in their volunteering roles as fundraisers and eventssupporters for Shine Cymru.

2013 welcomes the introduction of an excitingnew opportunity for Shine Cymru members, theirfamilies and friends, to sign up and train tobecome Ambassadors for Shine Cymru. If you areinterested in finding out more, then please get intouch with Sally King-Sheard, VolunteerDevelopment Officer, on E: [email protected] or T: 01745 889457 / 07896 912340.

Focus on Shine Cymru

The Welsh Government is reviewing the way inwhich social services operate in Wales.

Gwenda Thomas (Assembly Minister for Childrenand Social Services) says that the aim is to create aframework that supports the delivery of services in amuch more integrated way to ensure that bothindividuals who need care, and those who care forthem, have access to the right support and services.

This means that social services must work closelywith other public services and also with voluntaryorganisations such as Shine Cymru and theindependent sector, and that care will not be theresponsibility of social services alone. Theproposed new approach is set out in the newʻSocial Services and Well-being (Wales) Billʼ,which will be presented to the Welsh Governmentat the end of January 2013.

Shine Cymru will be monitoring developmentsand will endeavor to keep members informed asthe changes progress.Become a Shine

Cymru Ambassador

Tell us what you think…Shine Cymruorganisedinformationsessions,social groupsand fun daysin 2012.These events

were advertised through letters to ourmembers, emails, Facebook and the websitebut we had to cancel some of the events,due to lack of interest.

So... Shine Cymru staff and volunteerswould like you to tell us what sort ofsupport, events and get-togethers youwould like us to facilitate, and why.

Please call us on T: 02920 813847 or E: [email protected]

Coming soon to South Wales...

Your benefits are changing

If you are aged between 16 and 64 and getDLA, incapacity benefit, severe disablementallowance or income support (disabilityrelated) – you need to be prepared for thechanges.

Shine Cymru is planning an informationsession in South Wales to explain thechanges – date and location to be confirmed.

Please contact Margaret Stanton or SianPrince on T: 02920 813847 or E: [email protected]

Social Services in Wales are changing


Shine NI News

23

A great receptionAs part of Shine awareness week Shine NIheld five Mayorʼs receptions across NorthernIreland. The events took place in Derry CityCouncil, Ballymena Borough Council, ArdsBorough Council, Belfast City Council, andCraigavon Borough Council.

At each reception we launched our NorthernIreland Go Folic! promotional video featuringEilish Briggs and her son Michael, both ofthem also attended the Belfast City Councilevent.

During the week we sold yellow ribbons inshopping centres across Northern Ireland aswell as encouraging as many people aspossible to ʻWear Yellow and Shineʼ for thefirst Spina Bifida and HydrocephalusAwareness Week.

We had a lot of support from our Membersthroughout the week. They helped us in theshopping centres and were in attendance atthe Mayorʼs receptions. At each event arepresentative Member talked about theirpersonal story of living with spina bifida andhydrocephalus. The Members all had verypowerful messages about their experiencesand about their connection with Shine.

We were also delighted that Diane DoddsMEP joined us for our final event. Diane hadsponsored the International Federation forSpina Bifida and Hydrocephalus (IFSBH)event that took place in the EuropeanParliament, Strasbourg last October and onher return home attended the Mayorʼsreception in Craigavon.

We are very grateful to all the Mayors whohosted these receptions, to our memberswho attended and spoke on our behalf, andto all the people who wore yellow during the week.

[email protected]

Northern Ireland


Events

24


Events

25

Great news! We have so manygreat events happening throughoutthe Shine community that we donʼthave 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


SAMC News

26

SAMC getsmedia friendly

Hello everybody and welcome2013! Below you will find allthe latest news includingfeedback from the SAMCmeeting in December 2012.Were we were joined by CEOJackie Bland, DevelopmentManager, David lsom,Membership Officer, GobiRanganathan, Silver DreamsProject Assistant, Lynn Hart,and via SKYPE by SilverDreams Project Coordinator,Angie Coster.

[email protected]

DevelopmentsThe SAMC attended a MediaSkills Training Day on Friday30th November 2012. Thereason for this is to learn somebasic media and presentationskills, it is important for peoplewith spina bifida/hydrocephalusto speak on behalf of Shine andour fellow members. It is alsoimportant that we gain theseskills as it helps the SAMC tolearn about personalpresentation, speaking to aroom full of people, as well asincreasing our skills andcompetency when answeringquestions or giving interviews tothe media.

It was a worthwhile day foreveryone, and we werejoined by Shine staff DavidIsom, Gobi Ranganathan,and Gail Howard. By the timeyou are reading this we willhave had another training dayon Friday 1st February 2013,at Shine Head Office.

SAMC Selection and ElectionProcessDavid Isom explained thisprocess in the last Togethermagazine, and what this meansis that the next group of the

SAMC will be reduced from 15, to 10. See page 20-21 fordetails of your new SAMC.

Action GroupGobi let everyone know that abudget for the ʻRise and Shineʼevent in July 2013 has been set,and a number of exhibitors havebeen contacted. The closingdate for people wishing to attend the event is Friday 21stJune 2013.

Silver DreamsWe were joined Via Skype byAngie Coster and Lyn Hart whoare working on the new SilverDreams Project. The project isfor people aged 50 and overwith SB/H, it was a gooddiscussion and Angie answeredmany questions from the SAMC.So, if you are 50 or over why not

get involved? There is a newweb page where you could findout more please see –shinesilverdreams.wordpress.com

Final MeetingThe current SAMC met for thefinal time on Saturday 2ndFebruary 2013. The nextmeeting will be made up of thenewly elected SAMC.

So on behalf of the SAMC Iwould like to thank all ourmembers for your contributionsover the last three years andtrust we have made a positivedifference.

Mike Bergin SAMCCommunications Officer


Benefits

27

What is the Work Programme? The Work Programme is the new official back-to-worksupport programme. It was introduced in the summerof 2011 and it aims to provide benefit claimants withtailored support with preparation for returning to work.It replaces the main elements of the formerprogramme, such as New Deal, but supports someother employment preparation programmes such asWork Clubs and the Youth Contract.

The programme is being delivered by theDepartment for Work and Pensions (DWP) via amix of private, public and voluntary sectors serviceproviders such as Mind, A4E and Working Links.Providers are primarily paid for supportingclaimants into sustained employment, with higherpayments for supporting the hardest to help.

Providers have been given complete autonomy todecide how best to support participants whilst stillmeeting contractual minimum delivery standards;this is intended to encourage personalised support.The main type of support available is workexperience or training, or a mix of both.

Which types of benefit claimants are affected? There are voluntary arrangements for someclaimants, however, in most cases, you might becompelled to join the Work Programme; namely:

• If youʼve been getting Jobseekerʼs Allowance(JSA) for more than 3 months; or,

• If you get Employment and Support Allowance(ESA) and youʼre in the Work-Related ActivityGroup. Those in the Support Group are currentlyexempt.

The idea is that if a JobCentre Plus Personal Advisorconsiders it appropriate, claimants may be referredto do compulsory work-related activity. For all JSAclaimants and some ESA claimants, such activitycan even include actual work; for example, workexperience in a charity shop. Importantly, failure toparticipate without ʻgood causeʼ will result in abenefit sanction.

The rules for sanctions have changed recently on22nd October 2012. They have been revised to beconsiderably more punitive with new escalationrules punishing claimants with sanctions for up tothree years if they repeatedly fail to participate.Sanctions may be applied where there is a failureto participate in a mandated activity such as failingto turn up to an interview, failing to apply for a job,or failing to turn up for training.

Issues with the Work ProgrammeAlthough many claimants find referrals into theprogramme useful, there is some evidence tosuggest that the DWP are, in some cases,applying sanctions inflexibly and are not takinginto consideration mitigating circumstances, suchas conflicting appointments or mental/physicalill-health.

Our brief advice to youFirstly, if you are referred to the Work Programme,we advise you to ensure that the Work ProgrammeProvider is fully aware of the nature and difficultiesthat you face; where possible, it is best to supplymedical evidence or supporting letters.

Secondly, if at any given moment you are unableto attend, or complete a particular activity expectedof you, we advise you to seek immediate advicewith regard to demonstrating good reason withinthe vital five working day window. If you do so, youcan help to avoid a sanction, appeal and/or anyrelated financial difficulties.

Eri Mountbatten, Welfare Rights Adviser E: [email protected]

The Work Programme

For all JSA claimantsand some ESAclaimants, suchactivity can eveninclude actual work;for example, workexperience in a charity shop.


Clara 01733 421307

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Grand Prize Draw 2013











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together - issue 8

News & Politics