Together Issue 9
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This edition is packed full of features and information which really reflect the powerful way that you, the members, make Shine such a dynamic and life changing organisation.

This edition is packed full of features and information which really reflect the powerful way that you, the members, make Shine such a dynamic and life changing organisation.

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Together Issue 9 Document Transcript

  • 1. Combating Hate Crime Marathon Marvels IIH in the SpotlightIntroducinggiftedmusician…Kray-Z Legz!Issue 9
  • 2. Welcome toTogether3CONTENTSP4 Board newsP6 Rise & ShineP8 Kray-Z LegzP12 Gobi’s GossipP16 Amazing AhmedP20 Shine CymruP23 OT NewsP25 SAMCSubmission dates forSummer edition• Register of interest to submit:7th June 2013• Final date for submissions:21th June 2013• Publication date:July 2013Together Editor: Tom ScottDeputy Editor: Louise TylerAll enquiries and comments to:Together Shine, 42 Park Road,Peterborough, PE1 2UQTelephone: 01733 555988Textphone service: 01733 421395info@shinecharity.org.ukwww.shinecharity.org.ukPlease let us know if you are happy toreceive future mailings by email as thissaves on postage and helps theenvironment.Email: info@shinecharity.org.ukHi everyone,Together magazinehas continued to gofrom strength tostrength and we aredelighted to shareIssue 9 with you.This edition ispacked full offeatures andinformation whichreally reflect thepowerful way that you, the members, make Shinesuch a dynamic and life changing organisation.We have member contributions from MarciaCollins, who describes her experience in reportinga hate crime, and James Weavin, who talks abouthydrocephalus and how you can be proactive indiagnosing pseudocysts.We feature the stories of Mark Humphries, a.k.aKray-z Legz, and Ahmed Suleman, two membersat very different stages of life, but both with equallymoving accounts of their experience of living withspina bifida.We hear more about how you all pulled together inan amazing way to raise over £5000 in the GrandPrize Draw and how other fundraisers are makingmonumental efforts to ensure Shine continues to… shine!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!Issue 9... Ourmembers Shine!Cover photo: Mark Humphries a.k.a Kray-Z Legz. Photo: Tom ScottComing soon...Shades for Shine
  • 3. Board News4Louise Tyler started asMarketing & Events Officer inApril – welcome aboardLouise! Louise is helping toedit Together magazine soyou will be hearing more fromher. Gail Howard has left theMarketing & Events team; wewish her luck with all herfuture endeavours. EriMountbatten has nowfinished his contract asBenefits and Welfare RightsAdviser in Wales – thank youEri for all your work and goodluck with your new ventures.Helen Al-Sheba (ProjectsCoordinator) has decided notto return to work aftermaternity leave to the Grants& Legacies Team – she willbe doing other vital work athome with her children! KathyShaw has now stepped up tobe Grants & LegaciesManager – this team iscentral to sustaining theincome our charity needs.Congratulations Kathy andgood luck in your new role.The changes involved creating opportunities formore people to serve on Shines Board ofDirectors. We are now looking for potential newmembers of the Board, which sets the strategicdirection for Shine and ensures that it is well runand meets its legal obligations. Board memberswork closely with the Chief Executive and seniorstaff to make the charity as effective as possible.Being a member of the Board is stimulating,interesting, and sometimes even fun! The positionhas the potential to be both rewarding andchallenging.The aim is to eventually have a Board whosemembers cover the broad range of the charitysactivities, either through their expert knowledge,direct experience, or both. So, for example, wewould hope to have parents of a range of childrenof different ages; a young person with SB/H under25 years of age; and directors with social careexperience, health experience, legal expertise, andbusiness experience. The Board also includesrepresentatives of the Shine Adult MembersCouncil and the Medical Advisory Council. Onerepresentative should be from Northern Irelandand one from Wales. At least 50% of the Boardshould have spina bifida and/or hydrocephalus.Board members are expected to attend fourmeetings per year in Peterborough andtravel/subsistence expenses are paid. In additionto this commitment there are opportunities forBoard members to get involved in otherevents/initiatives and to apply their specialistskills/experience/expertise where appropriate.We are very grateful to all those willing to serve,or consider serving, on the Board.Anyone interested is very welcome to contacteither Jackie Bland or Margaret Connor for aninformal discussion/e-mail exchange.T: 01733 555988E: margaret.conner@shinecharity.org.uk /jackie.bland@shinecharity.org.ukShine Board seeks new membersStaff newsWe are now looking forpotential new membersof the Board, which setsthe strategic direction forShine and ensures thatit is well run and meetsits legal obligations.At Shines AGM last year new governance arrangements were agreed which will make Shine amore democratic and representative organisation.
  • 4. 5At last! Specialised commissioning forpeople with spina bifida on the NHS agendaSpecialised CommissioningShine staff have now had twoteleconferences with the NHSHead of Trauma Care ServicesRachel O’Connor. The purposeof the discussions was to askwhy spina bifida was not evenconsidered as a conditionwhich merited inclusion in thenew NHS specialisedcommissioning arrangements,most of which come into forcethis Spring.As reported in the last Together ithas taken repeated attempts tofind someone to answer ourqueries and a very long time toget anyone to engage with Shineon this issue. It was finallyintervention by the SpecialisedHealth Care Alliance last Octoberthat led to a dialogue with Ms.OʼConnor on 22 March. Thesedelays reflect the on-going lack ofconcern at a strategic level withinthe NHS about the healthservices delivered to ourmembers, and a widespreadmisunderstanding of the issuesaffecting their health.CEO Jackie Bland, HealthDevelopment Manager Gill Yaz,and Shine Adult Council memberLiz Potts asked Ms. OʼConnor, asthe lead professional responsiblefor specialised commissioning inthis area, why people with spinalinjuries are automaticallyconsidered eligible for speciallycommissioned, multi-disciplinaryservices to address their complexneeds, while people with spinabifida were not.Liz Potts described how trying toaccess multiple services indifferent hospitals across differentareas for many aspects of hercondition had led to misdiagnosisand actual damage to her health.She also pointed out the complextransport arrangements that hadto be made and the huge cost ofdelivering services in such afragmented way. Jackie Blandpresented Ms. OʼConnor withexamples, provided by Shinemembers from all over thecountry, of how their health needswere not being met because ofdisjointed services and lack of theappropriate knowledge andexpertise amongst healthprofessionals, ranging from GPsto specialist consultants.Ms. OʼConnor acknowledged thatthere was an issue which neededfurther investigation; the issueswe raised were new to her andshe could not say at this pointwhether spina bifida shouldqualify under the newarrangements or not. JackieBland argued that it could hardlybe possible, once the issue wasinvestigated, for people withtraumatic spinal injury to qualifywhilst people with spina bifida didnot, pointing out that it was afundamental inequality given thatthe needs of the patient groupsare so similar.Ms. OʼConnor promised toinvestigate further but said that itwould not be possible, whateverhappened, for spina bifida to beincluded in the year 2013-14.However, it is possible to reviewthe matter for the future. She saidthat alongside discussions aboutwhether spina bifida shouldqualify, work was needed toidentify exactly which servicesmight be needed and how theseshould be delivered. Sheacknowledged that a multi-disciplinary service akin to thatoffered to people with spinal injurywas what Shine and its memberswere asking for. Shine offered toconvene a group of medicalprofessionals with experience inthis area, together with NHScommissioners responsible forthe relevant service, and Shinemembers, to begin to specifywhat a service for people withspina bifida should look like. Thiswould enable the NHS to assesswhether such a service/carepathway was something thatshould be managed nationallythrough specialisedcommissioning.Whilst agreeing to look into thisissue Ms. OʼConnor said that anynew arrangements would have tobe delivered within existing,reduced, NHS budgets, althoughshe did acknowledge thatsavings might be possible if thecurrent arrangements wereinefficient.Thank you to all Shine memberswho sent in their experiences ofdisjointed/inappropriate healthservices and who wrote to theirMPs. We need to keep the issuein peopleʼs minds so pleasecontinue to do all you can to helpsecure NHS specialisedcommissioning for our members.
  • 5. Rise & ShineStoke Mandeville Stadium, Guttmann Road,Aylesbury, Buckinghamshire HP21 9PPA lifestyle event for adult members withSat 20th - Sun 21st July 2013Costs:Weekend rate £120people to attend)Day rate £15Saturday 20/7/13 to include:Healthcare:Sports:Misc:‘Have a go’ sessions & workshopsSunday 21/7/13 to include: ShineT EClosing datefor applicationsFriday 21st June2013Rise & Shine event feature6Disability Snow Sport UK, Badminton, Boccia,Basketball, Wheelchair Dance Association UK arejust some of the sports and activities on show. Forthose of you who arenʼt particularly into sport orprefer something a little calmer, thereʼll be otheractivities such as complimentary therapy and anArt Session with our very own Tony Nero! Therellalso be healthcare and well-being support fromvarious organisations including Hollister, and theMitrofanoff Support Group.Rise and Shine is being held at StokeMandeville stadium, the home of wheelchairsport. The venue is fully accessible towheelchair users, with the on-site swimmingpool and gym facilities having hoists andaccessible machines. These facilities are freeto use for those who are staying at StokeMandeville for the event, but also available forpay on the day use too.The accommodation is just a stones throwaway from the venue and is fully wheelchairaccessible; all rooms are spacious with a twinbed, and wetroom bathroom facilities.With free car parking available on-site andaccessible taxis able to ferry people fromAylesbury Railway station, Stoke Mandevillehas transport links that make Rise and Shineaccessible for residents for the event, andthose who want to come for the day.Itʼs great value at only £60 (based on twosharing) for the whole event or £15/day.Join us to Rise & Shine!The Rise and Shine Adult members’ event is one that will be fun andinformative with a number of exciting exhibitors there for the day, some ofwhich will also be providing demonstrations and tasters.Weekend rate £60(Based on two sharing anaccessible room)Single rate £120Day rate £15 (Lunch included)
  • 6. Member feature7How to report a hate crime…In December 2012, GeoffreyClark, a UKIP candidate, madea statement suggesting that theNHS should consider a blankettermination of babies affectedby spina bifida and otherimpairments. He alsosuggested that we are a burdento society. I was horrified thatsomeone could publicly makesuch comments, which I feltwere not only deeply hurtful, butalso could be against the law.I knew that there was newlegislation available to disabledpeople who felt that they were avictim of hate crime, and aftersome consideration I decided tohave a Google and see how Icould make a complaint tothe Police.I have to admit that I wasundecided about making acomplaint because I wasnt toosure how seriously I would betaken. However, I also thought,if someone can make suchhorrific comments, then we haveto complain.The Association of Chief PoliceOfficers has created a websitethat is entitled http://www.report-it.org.uk/disability_hate_crime1They define Hate crime as:“Any crimes that are targetedat a person because of hostilityor prejudice towards thatpersonʼs disability”This was the site I decided touse as it was so easy tonavigate. The form was reallyeasy to complete and only tookabout five minutes.I wondered how long it would takefor a response. Within half anhour, Warwickshire Police hadcalled me to listen to the details ofthe complaint and gave me anincident number. The followingday, a PC came to take astatement and it was thendiscussed with a Chief Inspectorwho was in charge of Hate Crime.At each stage of the process, Iwas kept up to date as to howthings were progressing and whatdecisions were being maderegarding my complaint.It was decided, after consultationwith The Crown ProsecutionService and the lawyers for thePolice in London, that the incidentwould be classed as a HateIncident. This meant that Mr. Clarkwould not be prosecuted but thatit was on file that he had madethe comments – it was a HateCrime Incident.Was there a point to making acomplaint? Yes, definitely andfor many reasons. I wanted todo something to challenge whatMr. Clark stated. I felt that whathe said had to be challenged. Iwanted to see how seriouslythe Police took me and also, asthis legislation is new, howmuch knowledge there wasaround hate crime anddisability.If you feel that you have been avictim of hate crime becauseyou are disabled, please dontlet it pass. Report it. It is notacceptable for any disabledperson to be verbally orphysically assaulted. It is notOK and you do not need to beworried about theconsequences. The Police willlisten and they will take action.You can also make a complaintby calling your local Policestation, you can call 999 if it isan emergency situation, or 101if it is not.Shine MemberMarcia CollinsI was undecidedabout making a complaintbecause I wasnt toosure how seriously Iwould be taken.
  • 7. The 24-year-old MC and rap artistfrom Street, Somerset may wellhave spina bifida, but hischallenges have not been limitedto his physical condition.Like many who turn to rap musicas a way to deal with their troubles,Mark has faced the turmoil of familybreak-ups, financial uncertainty,and having to live independentlyat an early age. These experienceshave defined not only who he is,but also the music he produces.Music became a part ofMark’s life at the age of fourwhen his Dad bought him aviolin. In the years thatfollowed Mark found thathe could turn his hand tomost instruments andby the time he was 15he was proficient inwriting his own songs.Feature8Kray-z LegzMan of the StreetFor Mark Humphries, a.k.a. Kray-zLegz, life has been tough.Words andphotos byTom Scott
  • 8. Feature9At the same time, the aspiring DJ was alsoundergoing a series of surgical operations, whichare familiar to many people who live with spinabifida. Mark attended most of the hospitals in hislocality, including the Frenchay Hospital, Bristol, forsurgery and has been a wheelchair user since theage of four.Although he enjoyed school, Mark explains that hemissed a lot, ʻI think itʼs the same for a lot of kidsgrowing up with spina bifida; being in and out forsurgery means that going to school can be quitedisrupted, and I was home schooled most of thetime.ʼMark believes that his childhood, and becomingindependent at a young age, had a big influenceon the shaping of his musical career. At just 15Mark moved into a YMCA sheltered housingscheme. He was keen to leave the supportedscheme and have his own place - upon his arrivalhis first question was: “How long will I be here for”?The YMCA staff advised him that his stay could beup to two years. This made Mark motivate himselfto get out of there as quickly as he could! Thescheme was structured in such a way that if hedemonstrated a positive attitude to course workthen he stood a better chance of securing a placeof his own.ʻI got my head down. They wanted to see that Icould be a responsible adult, and in six monthsthey offered me a flat.ʼMark really appreciates his flat, especially asearlier in his life his family had lost an accessiblehome when going through a rough patch.It is in this flat that Mark, through his industryname Kray-z Legz, now makes his music. ʻOverthe years we have saved enough money to buystudio quality equipment, we donʼt have apermanent space, which can be a problem, butwe get on with it anyway.ʼWhen Mark says they get on with it, he reallymeans it! His latest album, ʻMan of the Streetʼ,has just been added to iTunes and has beenproduced by renowned US-based producerDomini, who has worked with top artistsincluding Eminem.When talking about the successful completion ofthe album Mark reflects, ʻThere are quite a fewthings I can pull from life, I can play with themthen, and use them in my music.ʼʻThis means my music is based on emotion;there are sad tracks in memory of friends Iʼvelost; happy tracks about hanging out with friendsand having a laugh; songs which are aboutbeing angry – I figure this is what life is aboutand I use this in my music.ʼMark recognises that this is just the beginning ofhis career and continues to perform at highprofile events around the UK. He hopes that thisrise to success will continue, but ultimatelyknows what is most important, ʻAt the end of theday, crying donʼt get me no where, Iʼve alwayshad good friends and family around me, so Iʼvebeen very lucky in that respect.ʼ‘Man of the Street’ is available for downloadvia iTunes: itunes.apple.com/gb/album/man-of-the-street/id605628326He’s fromthe streetMark and his producer Gavin Lambert
  • 9. Family Opportunity Weekend10FamilyOpportunityWeekend“Thank you for letting our family havethis experience and knowledge”Our most recent Life Long OpportunitiesProgramme (LLOP) event, the FamilyOpportunities Weekend 2013, was aresounding success with eighteenfamilies enjoying a great mix of training,fun, and entertainment.
  • 10. 11Family Opportunity WeekendThe weekend included lots of interesting workshops from ShineʼsHealth Advisors including, ʻA childʼs first wheelchairʼ presented byEmma Enfield, OT Development Officer, and a ʻBladder and Bowelmanagementʼ session led by Gill Yaz, Health Development Manager.Saturday Afternoon was an opportunity to socialise with othermember families with a trip to Coventry Transport Museum andBenny Bearʼs Birthday Party.“We have hada fantastic,informativetime. Greatfamilies andShine staff”Photos by Tom Scott
  • 11. Gobiʼs Gossip12Gobi’s GossipIt seems an absolute age since my last quota of ramblings, and itprobably has been seeing as we’re already well past the firstquarter of the year! Where is the time going? Scary!These last few months, itʼs fair tosay, have been manic and a bit ofa blur! So, where do I begin?I guess the obvious point wouldbe from the beginning of the yearwhich saw me face up to therealisation that I would berequiring major surgery for aMitrofanoff revision. I knew it wascoming, but itʼs still never easy tohear such news. As a result,much of my usualShine activitieshave been on hold,so I must apologiseif any of you havebeen waiting for aresponse from mefor a while or ifyouʼve not had anyfollow up contactfrom me.By the time you read this, Iʼll beless than a month away from mysurgery date – 29th May (and Iʼllalso have become a year older,although whether or not Iʼm wiserwill remain to be seen!)Whilst Iʼve already had a minoroperation for a Supra-PubicCatheter insertion, the real“Challenge Gobi” starts after therevision operation. Itʼll be a longand difficult journey to recoverybut Iʼll get there! I hope to keep aregular blog whilst Iʼm out ofaction, so if you want to follow myprogress you can do so at:gobiranganathan.wordpress.comAfter the disappointment of theneed for surgery was confirmed, Ialso had the misfortune of injuringmy back. The bad back didnʼt juststop me from playing andcompeting at the 4 Nations Para-Badminton Championships inGlasgow, but it affected my dailyroutine for almost 3 weeks. Thoseof you whoʼve endured backtrouble, will know exactly what Imean when I say the pain was soexcruciating that evensitting still wasuncomfortable! Notgood!So, not the best startto the year for me, butdonʼt worry, itʼs notbeen all doom andgloom. Slowly butsurely the cloudshave lifted and myoptimistic mood has returned,although I have to admit, it was abattle to get back on track.Having picked myself up anddespite having the SPC insertionsurgery in the middle of March; Istill managed to get to Antalya inTurkey for the Enes Cup, theTurkish International Para-Badminton tournament. Mypreparation wasnʼt the best, withlittle training and with constantsoreness from my surgery; Iwasnʼt sure how well Iʼd perform.However, armed with painkillers, Itook to the courts and managed toget to the Doubles and SinglesFinal, winning Gold and Silver inthe two events respectively. I haveHaving visited StokeMandeville, I for onecan say that I’mimpressed with theaccommodation andfacilities which, evenfor me, were abig concern.
  • 12. Gobiʼs Gossip13to say, itʼs probably been the toughest event for meto date, and I really had to battle through and winugly at times, purely because the discomfort wasaffecting my play. Still, Iʼm happy enough with theoutcome as it was a nice confidence booster for meafter my tough start to the year.I still have the Spanish International to look forwardto and will tie that in with a much needed mini holidayafterwards. So all is looking a lot brighter and sunnier(unlike the weather weʼve been experiencing!). Iʼllprobably have finished the tournament by the timeyou read this, so keep an eye out on Facebook andTwitter for the results.Now that Iʼm getting back on track, my attentionwithin Shine is now firmly on making the Rise andShine Event in July a real success. Weʼve managedto secure a number of exciting exhibitors, some ofwhich will also be providing demonstrations andtasters on the day.It is promising to be a fabulous, eye-openingoccasion and with the venue being fully accessiblefor wheelchair users, there really is no excuse not tocome along and have a taste of some fun activities.For those of you who arenʼt particularly into sport,thereʼll be other activities available – it really will bean event with something for everyone.Having visited Stoke Mandeville, I for one can say thatIʼm impressed with the accommodation and facilitieswhich, even for me, were a big concern. I know manyof you out there will be worried about parking,accessibility, disabled toilets and accommodationissues, but I can re-assure you that Iʼm delighted thatwe have such an ideal venue to host the event. Itreally is an opportunity not to be missed.But donʼt let me influence you – check out the eventfor yourself. If you have any queries or concerns,drop me a line on my email, or on Facebook. I reallyam looking forward to it, and am hoping to haveplenty lined up for you all to “Rise and Shine” andkick-start the summer months in style!In the meantime, I hope the weather has improvedand that we can all look forward to some muchneeded warmth and sunshine!E: gobi.ranganathan@shinecharity.org.ukFB: facebook.com/Shine.Gobi.Ranganathan
  • 13. The Shine Grand Prize Draw 2013 was aresounding success and there is only onereason why – because you, the Shinemembership, got behind this draw and soldthousands of tickets!In previous years we have relied on salesthrough our Special Appeals Team, however thisapproach is not cost effective. With this in mindwe sent every one of our 10,000 readers a bookof five tickets.Many of you called or emailed us asking formore books of tickets to sell and we were blownaway by the demand. The total amount ofmoney raised was £5043!The winners of the topprizes on offer were:£1500 – Sally Osborne –NottinghamshireiPad 2 – Dawn Bradbury –Stoke on Trent£500 Next Vouchers –Abby Waldron – WestMidlandsNext time we are going to run the draw for alonger period to give everyone more opportunityto sell and buy tickets. We have also listened toyour suggestions for how the draw can beimproved, including stating more information onthe tickets and having the facility to buy ticketsonline.Thank you again for getting behind this initiativeand look out for the next Grand Prize Draw, wewill be including tickets in Together again whenthis takes place.Fundraising14To take part in either Brighton or Londonin 2014 please contact Clara atclara.gill@shinecharity.org.uk. We havelimited places and demand is high, soplease get in touch soon!With both the Brighton and the Virgin LondonMarathon now behind us, everyone here atShine would like to take this opportunity tothank all of our incredible athletes that haveparticipated in these events.The demand for places inthe Virgin London Marathonwas so high this year, wewere overwhelmed bythe amount of enquirieswe received.Special thanks mustbe given to thefollowing runnerswho have raised aCHAMPION amountof money, making thisyearʼs events our mostsuccessful to date:Hannah WhitlockDavid BirdFiona FultonDean GodwynJames GregsonPhil GouldDon GilliandEmma RapleyAnna SorrelTerry O’NeillRachel TurnbullSteve PollardDean GodwynHannah Whitlock
  • 14. 15FundraisingCommunity Fundraising – WE NEED YOU!We have recently come to the end of avery successful Charity of the Yearpartnership with the Queensgate ShoppingCentre in Peterborough. Throughout thelast year of working together we have runa number of fundraising events. We ran asponsored Christmas present wrappingstand and also made an amazing amountof money from selling the donated contentfrom closed shops. In total we have raisedover £19,000, which is a record amountfor the centre.We would just like to take this opportunityto thank all the staff at Queensgate, theshops that supported us in running ourevents and all the volunteers that providedtheir time and hard work which contributedto this wonderful achievement.You can fundraise for us in a variety of ways fromorganising a bake sale or coffee morning, toencouraging friends and family to complete asponsored run, parachute jump, cycle or swim!Paul and Sarah Rowe, the parents of Grace are awonderful example of a family who haveencouraged their community to fundraise for Shine.Paul completed the Great North Run for us lastyear and encouraged work colleagues and friendsto sponsor him, which in itself is a hugeachievement, but the family didnʼt stop there! NextSarah threw a huge party to raise funds for Shinecalled Graceʼs Charity Night. She contacted Shineand we arranged for posters, collection tins andmerchandise to be sent. Sarah also organised afantastic night with the help of her community at alocal social club with a singer, DJ, raffle and anumber of competitions including guess how manylollies in the jar, and lots more! Prizes were donatedby local businesses; friends and family came fromfar and wide to raise an amazing £2086.00!There are many wonderful individuals and familieswho are working tirelessly to support Shine, helpingus raise much needed funds and every little helps,so whether you can raise ten pounds with a localevent or several thousand: we need you!If you have an idea, want to complete asponsored event or wish to discuss your ideasplease contact Hannah Wysocki or Clara Gill viaemail.E: hannah.wysocki@shinecharity.org.ukE: clara.gill@shinecharity.org.ukCharity of the YearRecord BreakersIt is only with your help and the support of your friends and family that Shine is able tocontinue offering essential guidance and services.Peterborough
  • 15. 16Just over a year ago I was contacted by ShineSupport and Development Worker, SharonLapsley who told me about a family living inPeterborough who had just learned that the babythey were expecting had spina bifida andhydrocephalus.As with many of the families we meet here atShine, the news from their 18-week scan was acomplete shock to parents Rashid and Jilu. Thecouple began to search the internet for informationabout the conditions and, although discovering agreat deal of poor quality resources, they weresuccessful in finding the Shine website.Jilu was soon in touch with Sharon, who works asthe Support and Development Worker for her area.When a Support and Development Worker firstreceives contact from parents in this situationtheir first priority is to get more detail and ensurethat the family is receiving the highest level ofsupport available.Once this consultation had taken place, Jilu andRashid considered the future carefully, anddecided that continuing the pregnancy was theironly true desire. To get the specialist care neededthey were directed towards Neurosurgeon MariaCartmill at Queens Medical Centre, Nottingham …fast-forward to April 2013 and the family visited usat Shine to introduce us to their beautiful newson Ahmed.Although the last 12 months have been incrediblydifficult for the family Jilu is clearly cherishes hernew son, ʻBefore I was scared and we didnʼt knowwhat to expect, now we know, and although itʼsbeen hard, heʼs our son and we love him.ʼ For thefirst two months Jilu and Ahmed didnʼt leave theQMC, a hospital for which they have nothing butpraise. Ahmed had various problems, includingissues with digestion. After returning home for thesummer months, in November Ahmed wasreadmitted to QMC for kidney problems.His health has now improved but, as with lots ofparents we communicate with at Shine, Jilu stillhas lots of questions about what Ahmed will needas he grows.It is in working through these unknowns thatShine comes to the fore, offering expertise andsupport that other agencies cannot provide.Ahmed sleeps on a special mattress which wasdonated by New Life Charity after Sharoncontacted them; this kind of assistance will be on-going as the family move on and search for asuitable new home and start to think aboutpracticalities such as Ahmedʼs first wheelchair.AmazingAhmed!FeatureHis health has now improved but, as withlots of parents we communicate with atShine, Jilu still has lots of questions aboutwhat Ahmed will need as he grows.Words and photos by Tom Scott
  • 16. New animation unveiled17Get insidemy head!The two-minute animation will feature Ella, a characternamed after Shine member Ella Thomas, who provideda wonderful voiceover for the piece.Ella is shown inside an artistic version of her own brain,and describes to the viewer what hydrocephalus is andhow it affects her everyday life.The aim of ʻGet inside my headʼ is to educate a wideraudience about hydrocephalus. The animated film willhighlight what a hidden condition it can be, and showhow important it is that other people understand thechallenges that people with hydrocephalus can face.The film will be released on YouTube and weencourage everyone to share the link through all socialmedia channels, especially Facebook and Twitter.A special thank you to Alan and Ella Thomas. Ellaʼsfather recorded the sound professionally for the project,and Ella supplied the brilliant voice over.This summer Shine will be releasing an animation andaccompanying booklet called ‘Get inside my head’.Once released, the videowill also be located here:shinecharity.org.uk/getinsidemyhead
  • 17. Campaigns18With so many successful Go Folic! projects underour belt, we decided that the time had come toestablish a focal point in the year, to enableeveryone to unite in awareness raising activitieson a national level... So, 1st May was the launchof our first ever National Folic Acid AwarenessDay! This year was mainly about getting the dayinto the calendar and hopefully attracting plenty ofpositive press attention. Darren and I walked thestreets on the day, filming and interviewing womenabout their knowledge of folic acid and givingaway free vitamin samples. We also had afabulous new poster to promote the occasion.A huge thank you to James Fox who volunteeredto model for the campaign. I am sure he will provea great asset in helping us attract the attention ofthe ladies! Having just completed a SportsScience degree, James (a former junior GBrower) is currently trialing for the GB Paralympicrowing squad for Rio 2016. We wish James everysuccess with his sporting ambitions, and maybe anew modelling career?!Itʼs so exciting to see how far we have come overthe last two years. Not only are we spreading theword in England, Wales and Northern Ireland, GoFolic! is now starting to go global! Our informationand resources have been highly praised by otherorganisations, and our literature is currently beingused in Nigeria, with Poland and the Republic ofIreland soon to follow. A Welsh language versionof the new leaflet will shortly be available, and oursister organisation in Poland is also working on atranslation which will be available to downloadfrom the Go Folic! website.Thank you to Vitabiotics for sponsoring this firstFolic Acid Awareness Day, and for donating thefree vitamin samples, and also Lanes Health fortheir continued support of our grass-rootscommunity work.First Folic AcidAwarenessDay SuccessOur information andresources have beenhighly praised by otherorganisations, and ourliterature is currentlybeing used in Nigeria,with Poland and theRepublic of Irelandsoon to follow.Martine Austin, Health Campaigns Officer
  • 18. In the last issue I talked aboutCSF and what it does. Someof our members have acondition called IdiopathicIntracranial Hypertension (IIHfor short). This condition isstill a bit of a mystery, withpossibly more questions thananswers. But for those peoplewith the condition, it has amassive impact on their lives.Head pain, depression,fatigue, nausea, dizzinessand possible visualimpairment are just some ofthe symptoms; our memberstell us what an unpleasantcondition this is to live with.In IIH, the pressures inside thehead are too high, although theCSF can actually flow around,unlike obstructive hydrocephalus.The pressure builds up all roundthe head, but particularly aroundthe top and inside the coveringsof the optic nerves, which containCSF. People with IIH are at highrisk of their vision beingpermanently damaged becauseof this pressure. In addition, overtime the area of brain around theventricles becomes swollen andʻsoggyʼ; resulting in a slowing ofmessages around the brain.For most people, the causes arenever discovered, but as morewomen than men have IIH,there might be hormonesinvolved. Some medications, liketetracyclines (often prescribedfor spots) might cause IIH insome people.One theory, which Dr DeborahGrzybowski of Ohio, USA hasworked on, is that some peoplehave far fewer arachnoidgranulations (the little structureson the brainʼs covering whichabsorb CSF) than others. Maybesome people just donʼt haveenough to cope with all the CSFthatʼs made? These arachnoidgranulations are fragile and easilydamaged, and seem to findVitamin A very toxic. She hassuggested that people with IIH cutout Vitamin A from their food for amonth and see if they feel better.For some people, the largeveins in the head, which helpdrain the CSF away, maybecome kinked and surgery toplace a stent (which is a smallspring to hold the vein open)have been a success for somepeople. For most people,diuretics (water tablets) aregiven to stop extra fluidsaccumulating in the brain. Theside effects of these, ironically,include headaches, nausea,dizziness… Occasionally, LP(lumbar peritoneal, from theback to the belly) shunts areused to remove the CSF, thesetend to be a last resort.IIH seems to be associated withtimes of rapid weight gain, andthereʼs some evidence thatreducing body weight by 10%can improve symptoms forsome people. ʻAssociatedʼ doesnot mean ʻcaused byʼ, so donʼtlet anyone make you feel youʼvecaused your own IIH. Peoplehave often told me that they onlygained weight once the illnessbegan and that they feel too ill tocook, eat, or exercise, but it isworth trying to lose weight if youcan, as some people haveshown a real improvement intheir symptoms when theyʼvemanaged it.IIH used to be called BenignIntracranial Hypertension – Ithink youʼll all agree thereʼsnothing ʻbenignʼ about it!Health19Overcoming thepressures of IIHBy Gill Yaz, Health Development ManagerOne theory ... is that somepeople have far fewer arachnoidgranulations (the little structureson the brain’s covering whichabsorb CSF) than others.
  • 19. Shine Cymru20Shine Cymru update...Benny Bear’sBirthday Picnicand Fun Dayat Folly Farm, PembrokeshireBegelly, Kilgetty, Pembrokeshire, SA68 0XASunday 23rd June 201311am onwards (meet at Main Gate)Come and have somefun, meet Benny Bearand other families fromacross the South andWest Wales region.Bring your own picnicand then share in aslice of Bennyʼsbirthday cake andsome lightrefreshments.We have securedfantastic groupdiscounts at last yearʼs prices – Adults – £5.50Children and OAPs – £4.50. Carers and under2s free of charge (proof needed). Please notethese discounts only apply when you are partof the group so please ensure you arrive by11am.If you are interested in attending pleasecontact Melanie Hayes on:T: 01437 720089 / 07789616460E: melanie.hayes@shinecharity.org.ukHaving difficulty withtransport? Thenperhaps TravelineCymru can helpTraveline Cymru provides information on access topublic and private transport across Wales and hasspecific information on travelling with a disabilityand on local services that provide travel support.W: traveline-cymru.info/travellers-with-a-disabilityThank you, BIGLottery Fund WalesSince April 2011 Shine Cymru has beendelivering a Big Lottery Wales fundedproject, to begin to address the impact of theWelfare Reforms, and to encourage moreindependence and social opportunitiesacross Wales.The project has now come to an end but ithas provided the first steps in setting outShineʼs benefits strategy which will helpensure:• Support and Development Workers willhave the information and knowledge toprovide basic support on welfare reformand benefits advice.• Members are signposted to otherappropriate agencies for more complexqueries and issues.• That the DWP and other benefitsagencies have access to importantinformation on living with spina bifidaand/or hydrocephalus.Weʼd also like to thank Eri Mountbatten andwish him well. Eri has been Shine CymruʼsWelfare Rights Adviser during the projectand is now moving onto pastures new. Goodluck Eri!
  • 20. Shine Cymru21Go Folic!in WalesShine Cymru’s West Wales Support andDevelopment Worker, Mel Hayes, has beenparticularly proactive in promoting Go Folic! inWales, and has recently gained the support ofa health worker who will be distributing GoFolic! leaflets when conducting sex educationtalks in schools and colleges in her region.Inspired by this and the success of our partnershipwith the Family Planning Association, MartineAustin, Shineʼs Health Campaigns Managercontacted the ʻAll Wales Sexual Health Networkʼwho enthusiastically invited her to write an articlefor their quarterly newsletter ʻIntersexionʼ.The newsletter goes out to professionals involvedin sexual health throughout Wales and provides afocus on key projects underway in Wales, as wellas highlighting new resources (including a link toorder our Go Folic! materials) and reports relatingto sexual health. The article appeared in theMarch issue and has so far resulted in a requestfrom Betsi Cadwaladr University Health Board for1,000 leaflets, plus postcards, and posters todistribute in its clinics.The article can be viewed atwww.shnwales.org.ukA Welsh language version of the leafletwill also be available from May 2013.Please get in touch with Martine onT: 01733 421349 orE: martine.austin@shinecharity.org.ukif you have networks through which you canhelp promote our Go Folic! campaign.CommunityFundraisingand Volunteeringin WalesFebruary and March 2013 have beenpromising fundraising months for ShineCymru with over £1800 being raised throughevents and donations across Wales.Thanks to …• The Ladies Senior Team at WhitchurchGolf Club in Cardiff has raised over £400following a golf day• The organisers and volunteers of the NickBeer 10K race in Llandudno• The Town and Community Councils ofAbenbury, Gresford, and Llandinan• Maesteg Lions, Bridgend• Gwendraeth Social Club, Llanelli – withparticular thanks to Jim Watherston,grandfather of one of our West Walesmembers, who nominated Shine Cymruas Gwendraethʼs ʻCharity of the YearʼDiolch yn fawr i iawnMelanie Hayes, Support and DevelopmentWorker for West Wales, with Malcolm Jones,Club Chairman and Dai and Malcom, whoorganised a charity quiz.
  • 21. Shine NI News22Celebrations and AwardsThe Shine Northern Ireland award was won thisyear by the Rainey family. The Rainey familyhave been involved with us since Zoe was born.Dad, Paul, is a Member of our Northern IrelandSteering Committee. Kirsty and Paul haverepresented us at meetings in the educationsector. They also started Waddle which is amajor annual fundraiser for us. Congratulationsto Cara, Kirsty, Paul, Zoe, and all the extendedfamily.We are delighted that one of our MillenniumVolunteers won runner up for CommunityService in the Credit Union Young PeopleʼsAward. Hannah Campbell was nominated byher school for the award. Hannah has beeninvolved in many activities for us, includinghelping to decorate cupcakes, making toyaeroplanes, helping at social events and,selling raffle tickets. Congratulations Hannahyou are definitely a “Shine Star”.Shine NI held an event in Cookstown tocelebrate our 3 year Big Lottery funding. Wehad two speakers with personal experience atthe event, Perpetua OʼDriscoll and MeganGilbert. They described their experiences ofliving with spina bifida and hydrocephalus andtheir real “CAN DO” attitude. Dr JohnMcCann, Consultant in RehabilitationMedicine provided a question and answersession. He has been working in theMusgrave Park Hospital Spina Bifida Clinic for20 years and has seen real changes intreatments during that time.Our Spina Bifida and Hydrocephalus LifelongCare Conference in Belfast in February, wasattended by 145 professionals. Nineconsultants covered all aspects of spina bifidaand hydrocephalus. There was lively debateabout many of the issues which face ourmembers. We hope that the outcome is ahealthcare workforce with a betterunderstanding of our members.
  • 22. Occupational Therapy / This is Me23The new Shine network for 11-14 year olds, funded by theRoald Dahl Foundation, hasnow been named and there arealready 150 members! The Thisis Me club was named by theyoung people themselves, andthe winners of the namingcompetition were: Luke Taylor,Anna Holley, and Mathew Lee.Congratulations to all three!Membership packs have beensent out to every member – andinformation about events willfollow later in the year.Facebook (for the 13+ group)should be up and running by thetime you read this too.A new competition is nowunderway and the amazingprize is a visit to Britschool inCroydon to see how aperforming arts school works!(Lots of famous artists like KatyPerry, The Feeling, and RizzleKicks went to Britschool). If youare not yet a member of This isMe and want to enter thecompetition, please emailthisisme@shinecharity.org.uk foran application form –membership is free, but youmust be 11-14 years old.This is Me thisisme.org.ukFB: facebook.com/groups/536595889717738/Emma Enfield, Head Occupational TherapistPeople often ask what type of mattress to buy.Unfortunately, it seems that lots of us, includingchildren, suffer from pain during the night. In turn thatleads to tiredness, being unable to function properly,feeling depressed, stressed, irritability. Getting a goodnightʼs sleep is important.Unfortunately, unless you need a mattress forproblems with pressure relief, you have to provide ityourself. Pain and discomfort donʼt often meet thecriteria for a mattress to be prescribed from the NHS.A wide range of mattresses is now available to buyand although some of the advertised ones are veryexpensive, they donʼt have to be, so itʼs a good ideato shop around.Basic memory-foam mattresses seem to be helpinga lot of you. It is even possible to buy these just as aʻtopperʼ to a standard mattress. However, there are afew things to think about when buying a new mattressor topper to prevent problems such as the mattressslipping off the bed. Do you need your mattress tobe waterproof? Does it fit the bed properly? Does itsupport you in exactly the way you need?Be aware of the height, and check whether this willchange the overall height of the bed when combinedwith the mattress. This is particularly important whenconsidering how you transfer in and out of your bed.If you use a sliding technique from/to a wheelchair, ora sliding-board, then you might not want this heightto be changed. Similarly, if you have a carer to helpyou, the height might be important for them too.Finally, some types of mattresses arenʼtrecommended for babies for safety reasons. Pleasecheck with your Health Visitor if you have anyconcerns, or contact us for advice. There are nospecific mattresses recommended for babies aftersurgery for spina bifida, however, if you feel unsurewe can try to help. Our safety advice indicates that amattress should be firm, flat and have a waterproofcover that can be removed and thoroughly washedwith antibacterial detergent. If you chose to usememory foam, ensure that it is still firm and that itcannot be indented easily by your babyʼs weight,otherwise there may be a risk of suffocation whenthe baby rolls.Night, night…sleep right.
  • 23. Member feature24My name is James and Iwas born with congenitalhydrocephalus. About twoyears I began toexperience some strangesymptoms, certainly notyour ʻusualʼ hydrocephalustell-tale signs. Iexperienced abdominalsymptoms such as severebloating and cramping.The first episode lasted for a couple of days andwe put it down to a stomach bug. However for thenext 12 months the symptoms would return every4-5 weeks; each time the symptoms wouldworsen, but I would recoverat a quicker rate. I went to my GP andwas diagnosed with Irritable BowelSyndrome (IBS). I followed theadvice given by my GP, however,each month the symptoms wouldreturn. The diagnosis of IBS justdidnʼt ʻfeelʼ right. There was onesymptom that I experienced whenI went for a run my stomachwould as though there was a ʻsloshingʼ feeling,despite not eating or drinking beforehand.I went back to the doctorʼs to ask for further tests;the next diagnosis was a possible food allergy.However, despite a new strict diet my symptomscontinued to return each month, until one Sunday Ideteriorated within a matter of hours and becamecritically ill, and I was rushed to the QE Hospital inBirmingham. The doctors discovered with a simpleultrasound that I had a large pseudo cyst(measuring 9.5cm x 13cm) at the abdominal endof the shunt which had blocked the free flow of myCSF and had an infection in my brain, both ofwhich had gone undetected. It was the cyst thathad caused the ʻsloshingʼ feeling and the shuntinfection had caused nausea, fever, neck stiffness,and severe lethargy. Due to the seriousness of mycondition the neurosurgeons quickly operated toremove my shunt and put in an external drain.Iʼm pleased to say I have since recovered andreturned to work. Iʼm incredibly grateful for thesupport I received whilst I was ill from my fiancé,family and employers (Contigo Energy). Followingmy illness the company decided to dedicate theirfundraising effort to Shine and take part in theBlythe Valley Park 5k & 10k fun run.I will never be able to show thetrue extent of my gratitude to myfriends and family for theirsupport. Even more to my newwife Ashleigh, without her thewhole experience wouldʼve beenso much worse (thank you Ash, Ilove you!).I want to share my experience with all Shinemembers and emphasise the message that if anyof these symptoms seem familiar, talk to yourdoctor. Shunt infections and pseudo cysts can beeasily treated, but if left can quickly becomeserious. If in doubt, talk to your doctor, it could saveyour life. It did mine.Shine MemberJames WeavinPseudocysts –the hidden danger!The doctors discovered with a simple ultrasound that Ihad a large pseudo cyst (measuring 9.5cm x 13cm) at theabdominal end of the shunt which had blocked the freeflow of my CSF and developed an infection in my brain,both of which had gone undetected.Due to the seriousnessof my condition theneurosurgeons quicklyoperated to removemy shunt and put in anexternal drain.
  • 24. SAMC25SAMCThe SAMC last met in February2012. When we were joined byCEO Jackie Bland, DevelopmentManager David lsom,Membership Officer GobiRanganathan, Silver DreamsProject Assistant Lynn Hart,and Silver Dreams ProjectCoordinator Angie Coster.mike.bergin@shinecharity.org.ukDevelopmentsThe SAMC attended a mediaskills training day on Friday 30thNovember 2012. The reason forthis was to learn some basicmedia and presentation skills. Itis important for people with spinabifida/hydrocephalus to speak onbehalf of Shine and our fellowmembers. It is also importantthat we gain these skills as ithelps us when answeringquestions or giving interviews tothe media.Action GroupGobi let everyone know thatpreparations for the Rise andShine event in July 2013 aregoing well, with a budget beingset and a number of exhibitorscontacted. The closing date forpeople wishing to attend isFriday 21st June 2013.Silver DreamsWe were joined via Skype byAngie Coster project coordinator,and Lyn Hart who is theadministration support for thework. The project is for peopleaged 50 and over with SB/H, itwas a good discussion andAngie answered many questionsfrom the SAMC. So if you are 50or over why not get involved.There is a Facebook page fordaily interaction and you couldmeet new friends.Final MeetingThe outgoing SAMC met for thefinal time on Saturday 2ndFebruary 2013, after this thenext meeting will be made up ofthe newly elected SAMC. Onbehalf of the SAMC l would liketo thank all our members fortheir contribution over the lastthree years and hopefully wehave made a difference throughour work.Sunday TelegraphIn late January 2013 some ofthe SAMC including myself,Paul Zickel, Amy MacGibbon,and Shine staff David Isom, andDarren Fower visited the officesof The Sunday Telegraph. Wewere given a full tour of theoffices in London, and saw howeverything is done on a day-to-day basis. It was very interestingand we met some lovely peoplethroughout the day. Shine werethe first charity to be ever giventhis opportunity, so I think that isworth front page news on anypaper!Here for YouAs the newly elected SAMC, weare here for the next three yearsfor all adult members. We thinkthere is no better way to startthan by asking you, ourmembers, what concerns youwould like the SAMC to address.Apart from our influence on workhere at Shine, we examinesignificant issues so that we canbe instrumental in makingchanges. We cannot do itwithout you the members, so, ifthere is anything you would liketo see the SAMC doing, why notlet us know?Finally…With all the Welfare changesthat have started from 1st Aprilfor 2013 & 2014, we can allaspire to making things better bygetting involved.Mike Bergin SAMCCommunications OfficerE:
  • 25. Benny Bear26Benny Bear’s adventuresI visited the Dalgarno family, whose son Ethan hasSB/H. They asked me to help with their penaltyshoot-out, it wasnʼt till I got there that I realised Iwas the goalkeeper! I tried my best, but they stillmanaged to get quite a few in. It was an amazinglyfun day and we raised nearly £200 for Shine.Next I was back in Peterborough for Shineʼs EasterExtravaganza at the Queensgate Shopping Centre.I had lots of fun meeting new friends and paintingeggs. This event marked the end of a verysuccessful partnership with the shopping centre,as we have been their Charity of the Year andraised £19,000!Continuing with the Easter fun, my biggestadventure recently was to go to Somerset ShineʼsEaster party. It was a fun packed day, we madebaskets and bonnets. My favourite bit was thedancing and party games, and getting to knowSomerset Shineʼs younger members. Lots of newBenny friends made!Itʼs not all been fun and games though, I went tocheer on the dedicated Shine runners at theBrighton marathon and they did amazingly well.Congratulations to everyone that took part.There are lots of outings planned for the rest of theyear, so if youʼre going to any Shine events keepan eye out for me, I love it when the Benny Bearclub members come and say hello! You can alsokeep up to date with what Iʼm up to on my blog,which also has details on how to join.As always I have been a busy bear, seeking out new adventures and meeting new Bennyfriends, so where to start…
  • 26. Events27Great 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 555988E: info@shinecharity.org.uk or visit the events page of the websiteshinecharity.org.uk/eventsEvents EventsClosing datefor applications21st June 2013