together issue 16
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Inside: Shine in the City • Latest News • Commonwealth Fellows
Shine Heritage – an exhibition in the making
Nominations now open for Shine
Awards 2015
Issue 16
Rewarding and challengingThe Board is responsible forShine’s overall strategy whileensuring that it is well run andmeets its legal obligations.Board members work closelywith the Chief Executive andsenior staff to make thecharity as effective aspossible. Being a member ofthe Board can be stimulating,rewarding and challenging -even fun!
Representing Shine’smembershipTo reflect the membership, atleast 50% of the Boardshould have spina bifidaand/or hydrocephalus (SB/H).As one of our trustees withSB, Katrina, is steppingdown, we would particularlywelcome expressions ofinterest from members withthe conditions who can bringadditional skills andexperience. One must befrom Northern Ireland (as thepost is now vacant) and onefrom any of the countries inwhich we work.
A range of skillsShine aims to have a Boardwhose members cover thebroad range of the charity’sactivities, and bring relevantknowledge and experience. So,for example, we would hope tohave parents of children withSB/H, a young person withSB/H, and Directors with socialcare, health, legal, HR, businessexperience, or other skills thatmay help Shine to meet itsobjectives.
Events and meetingsBoard members are expected toattend four meetings each yearin Peterborough and travel/subsistence expenses are paid.In addition to this commitment,
there are opportunities to getinvolved in other events/initiatives and to apply specialistskills and experience whereappropriate.
We are very grateful to all thosewilling to serve, or considerserving, on the Board.
Want to know more?If you are interested, pleasecontact Kate Steele or MargaretConner for an informaldiscussion or email. If you thenwish to apply, we will ask you tosubmit a letter of applicationoutlining your skills andexperience.
Suitable candidates will beinvited to meet the Chair of theBoard, Chief Executive, andother senior staff or trustees todiscuss the requirements of theBoard, your skills, and what youcan offer Shine. Candidateswho meet the skill set will beincluded in the election to beheld this October. The outcomewill be announced at the AGM inNovember 2015.
Could you serve onShine’s Board?
Shine Board of Trustees
Shine’s new governance arrangements, agreed at the AGM in 2012, aim to makeShine a more democratic and representative organisation. In 2013, the first threeDirectors were elected by the membership. We now have two further vacancies...
To register interest please contact either Kate or Margaret• Telephone: 01733 555998• Email: [email protected] / [email protected]
‘It is a fulfilling role,contributing to goodGovernance anddirection in aprofessionally run andworthwhile charity.’Yvonne Lindsay,Trustee
2 www.shinecharity.org.uk
3
CONTENTSP2 Shine Board Elections
P4-5 News
P6 Go Folic!
P7 Shine in the City?
P8-9 Feature: Route to Independence
P10-11 Feature: Heritage
P12-13 Fundraising for Shine
P14-15 Feature: Commonwealth visitors
P15 Shine family photo winner!
P16-17 Family Conference photo page
P18 Health
P19 Planning a holiday?
P20 SAMC update
P21 This is Me Club
P22-23 Shine40Plus update
P24-25 Update on benefits / financial
planning
P26 Shine Cymru
P27 Shine NI
P28 Benny Bear and Bella Bear
P29 Gobi’s gossip
P30-31 Upcoming events
Submission dates for summer edition• Register of interest to submit: 20/07/15• Final date for submissions: 21/08/15• Publication date: October 2015
Together Editor: Tom ScottDeputy Editor: Debra Chand
All enquiries and comments to:Together Shine, 42 Park Road,Peterborough, PE1 2UQT: 01733 555988E: [email protected]: www.shinecharity.org.ukReg Charity No 249338
Please let us know if you are happy to receivefuture mailings by email as this saves onpostage and helps the environment.E: [email protected]
It is hard to believe that Issue16 of Together is in yourhands and that this will be mylast time editing themagazine. At the end of JuneI will be leaving Shine and I’dlike to take this opportunity tosay a huge ‘Thank you!’ toeveryone who has contributedto Together over the past four years - you reallyare the reason it is such a great publication!
We have another packed edition with the usualspread of news, views, features, and images toreflect the dynamic Shine community! You canread our three varied feature articles and seesome of the images from another great FamilyOpportunity Weekend (page 16-17). We’ve alsopacked in all the regional news, updates from ourvarious member groups and, of course, Gobi’sGossip (page 29).
Please keep your stories, images, and questionscoming so that the new editorial team have lots toinclude in the next issue. Keep Shine-ing!
Cover photo: Iona Ganderton Taken by: Tom Scott
Welcome to Together
A huge‘Thank you!’
Farewell Jackie BlandMay 2015 saw JackieBland step-down as CEO of Shine. We wouldlike to thank Jackie foreverything she has donefor the organisation andwish her all the very best for the future.
News
Specialising in paediatric urologyand gynaecology, Caroline ispassionate about ensuring qualitycontinence services and supportfor children and their families. Herwork has included developing atoolkit for rectal irrigation whichencourages best practice andchoice, with an aim to minimisethe need for surgery in somechildren. Caroline was alsowinner of the ‘Wellchild Nurse ofthe Year’ award in 2007.
Caroline’s nomination wassupported by parents includingShine member ChristineAnderson:
‘Caroline is always going theextra mile – visiting us at home,undertaking and involvingfamilies in research, andchallenging the healthcare and
education systems to improvepractice. If she doesn’t knowsomething she’ll find out.
‘When my son Christopher wasborn, there was no urologyconsultant, so we slipped throughthe net. We came home andwondered ‘what next’? Being aparent of a child with spina bifidaor hydrocephalus can be quitelonely – you can feel stranded.Finding Caroline was a godsend,and she has supported familiesto set up a facebook group andmeet together.
‘When Christopher was five wewere told he needed surgery.With support from Caroline wefelt confident to challenge this.Now, Christopher has botoxinjections every few years,rather than needing any surgery
or medication, and he’s doingreally well!’
Caroline also goes into schoolsand runs training events forparents and health teams.
Christine explains,‘Caroline’s areally good link, arranging eventsso that we can share ourexperience as parents, and theprofessionals can share the latestdevelopments with us. She’sinvolved families in lots ofpractice based research too.’
Caroline was delighted to receivethe award: ‘We all need to worktogether, especially health andsocial care. It’s hard to changepolicies, but worth the effort, sothat children can engage fully inlife – and keep healthy inadulthood too.’
Consultant Nurse, Caroline Sanders, hasbeen awarded an MBE for her work over thelast 23 years with children who experienceneuropathic bladder, which has includedchildren born with spina bifida.
4 www.shinecharity.org.uk/media-centre/news
Caroline Sandersreceives MBE
Who will Shine in 2015?
Nominations are now open for the 2015 ShineAwards! Deadline for nominations: Friday 14th
August.
The four categories are Shine Volunteer, ShineYoung Achiever, Shine Professional, and theJohn and Lucille Van Geest Award foroutstanding contribution to the Shinecommunity. If your nominee is chosen, you will
receive an invitation to come and see themreceive their award at the Annual General Meetingon 19th November. For more information and tomake a nomination, go to W: www.shinecharity.org.uk/shineawards orcontact Val Stokes on E: [email protected] or T: 01733 421356
The other special awards – Fundraisers of theYear and Lifetime Contribution – will be decidedby a Shine panel of judges.
Caroline Sanders
receives her MBE
C facebo ok.com/ShineUKCharity @SHINEUKCharity 5
News
Rebecca Loo is on a mission: torevolutionise orthotics care in theUK. This will help many peoplewith spina bifida.
Children and adults withdisabilities or medical conditionsneed to get quality, well fittingorthotics such as splints andfootwear quickly, in order to carryon living their lives to the full.However, delays, poor materials,or lack of funding often meanthey don’t get what they need intime. The Orthotics Campaignaims to change this bychallenging the system andeducating health commissionersabout what patients need.
Rebecca knows why this matters.Her son, David, has cerebralpalsy and talipes (club foot).When David was nine he neededlots of plaster casts to straightenhis feet, but the splints that heneeded to keep his feet straightafterwards took solong to arrive thatDavid hadoutgrown them. Bythen he wasunable to getaround unaidedand had missedout on school.
Rebecca explains,‘For children especially, delaysmean they may be in pain, unableto walk or stand, or to carry onwith school life. It can also meanhaving surgery or amputation thatcould be prevented. All this canbadly affect sleep, behaviour, andoverall wellbeing.
‘We want the NHS to set clearguidance so that patients havegood, consistent care. In someareas you have to pay fororthotics, while some serviceswill not fund cheery designs onchildren’s splints, which thendiscourages children fromwearing them!’
‘NHS England are now listeningto us but have limited power.Every £1 spent on orthoticssaves the NHS £4 elsewhere -but often in another budget, soit’s complex. If an orthopaedicsurgeon only gets paid everytime he operates, the incentive isto go for surgery rather thanprevention. Commissionersneed good information, or howelse will they know what to do?’
Rebecca would love to hear fromShine members. ‘The more weshout, the more we’ll be heard!’You can get in touch via
www.nsoc.org.ukor twitter@orthotics_campaign
David Loo (playing football);
David and Rebecca Loo
The OrthoticsCampaign Needs You!
HealthAdvisoryCouncillaunchesfor ShineShine’s new HealthAdvisory Council held itsfirst meeting on April 29th.
The new council bringsspecialists together toadvise and help Shineshape its policies onmatters of health andwellbeing.
The council will bringtogether Shine’s ownhealth specialists,including Gill Yaz, HealthDevelopment Manager,and Martine Austin, Headof Prevention, with othereminent specialists suchas Richard Morgan,Consultant Physician,Chelsea and WestminsterHospital; Trudi Edginton,Senior Lecturer inNeuropsychology,University of Westminster;Roger Bayston, Professorof Surgical Infection,QMC Nottingham; Dr AnnMolloy, AssociateProfessor, School ofBiochemistry andImmunology, TrinityCollege Dublin; RichardEdwards, ConsultantNeurosurgeon, Bristol,and Ann Yates, Director ofContinence Services,Cardiff and Vale UHB.
Team Go Folic! was out in full ‘pink’force at HQ, in the Northern andSouthern Regions, and Wales andNorthern Ireland. As usual, our veryown Robin Barnatt needed noencouragement to don a pink T-shirtand hit the streets - all in the name ofawareness raising of course!
Despite the upcoming election, ConservativeParliamentary Candidate for Peterborough (andlong time folic acid awareness supporter) StewartJackson came along to show his support, alongwith Peterborough City Council CEO GillianBeasley, amongst others. It was also great to beable to share such an important day with ourFestus Fajemilo Foundation guests from Nigeria,who threw themselves fully into the day’s activities.
In addition to all the awareness raising events thatwere taking place in supermarkets, hospitals,colleges, and city centres across England, Wales,and Northern Ireland, we were also, as usual, veryactive on Facebook and Twitter. Last year weachieved an impressive social reach of one millionpeople on social media, and we’ve smashed thatagain this year! It’s truly amazing to see what wecan achieve in just one day.
Of course, we couldn’t do it alone. I would like tosay an extra special ‘Thank you’ to all of ouramazing volunteers who gave up their time to helpus spread this important message, not forgetting all
those who shared, re-tweeted, and joined in ourThunderclap campaign on social media. Wecouldn’t do it without you! It’s so exciting to see howthe event has developed and grown over the lastthree years, and I’m looking forward to achievingeven bigger and better things next year!
If you would like to be involved in next year’s event,or would like to help with Go Folic! in any way,please contact me on T: 01733 421349 or E: [email protected]
Campaigns
‘Thank you to all ouramazing volunteers –and to everyonewho shared, re-tweeted, and joined in ourThunderclapcampaign on socialmedia – we couldn’t do it without you!’
It hardly seems possible thatanother year has passed, and yethere we are celebrating our thirdNational Folic Acid Awareness Day!
Journalist and
broadcaster,
Bel Mooney,
supports the
Go Folic!
campaign
6 C facebook.com/GoFolicUK @GoFolicUK
Anencephaly Support GroupThe new Anencephaly Support Group, which is still growing rapidly, is dedicated to raising awareness of the condition and ensuring that families have the support and information they need. Find out more atfacebook.com/groups/ShineAnencephalySupport
C facebook.com/SHINECharityintheCity @Shine_intheCity 7
Shine in the City aims to inspire businesses,organisations, schools, and colleges inPeterborough to participate in fundraising activities,sponsorship and volunteering, while Shineprovides opportunities for work experience andlearning, for example, on disability awareness.
The law firm, Irwin Mitchell (IM), became the firstShine in the City corporate partner, andsponsored the launch. IM Partner, Guy Forster,said ‘We are delighted to be actively involved inShine in the City from the start. As Shine is basedin the heart of Peterborough, it is a greatopportunity to share their heart for people withspina bifida and hydrocephalus through this city-wide scheme.’
Born from the highly successful Chairman'sChallenge year in which Shine Chairman,Richard Astle, undertook physicallychallenging fundraising events and engagedsupport from local businesses andindividuals, Shine in the City will ensure themomentum from events such as the Saharatrek, half marathons, and Santa Dash ismaintained.
Their efforts, and a generous donation by theHarry Cureton Trust, enabled the new ShineHealth Suite to be built and successfully pilotedby the end of 2014. An early target for Shine inthe City will be to raise the funding needed toequip the health suite fully.
Shine in the City
Shine has launched the Peterborough-wide initiative called Shine in the City todevelop new partnerships and support, and to raise awareness of spina bifida and hydrocephalus.
Shine inthe Citylaunches inPeterborough
With thanks to our event sponsor
Heritage
The Invisible Heritage of SpinaBifida and Hydrocephalus: anexhibition in the makingThe Shine Heritage exhibition is set to launch in April next year. Marc Lupson,Heritage Project Development Officer, explains why this event is so important andthe care being taken to prepare for it.
Since joining the Shine familyas Heritage ProjectDevelopment Officer back inFebruary, my journey hasbeen one of learning,appreciation, respect, andenjoyment in getting to know all of you out there!
Coming from a background of environmental and social grants management, as well as beingan academic trained in heritage,my knowledge and awarenessof spina bifida andhydrocephalus was limited tosay the least.
Heritage
So, being asked to design anddeliver a permanent exhibitionabout the heritage of spina bifidaand hydrocephalus is a bigchallenge.
Where do I start?How do I choose what to put init? How do I make it accessibleand interesting to everyone?These were just some of themany questions that I askedmyself on my first day!
What’s it all about?The original idea was a smallerexhibition on the history ofASBAH/Shine to celebrate its50th anniversary in 2016.However, there is a hugeamount of wider historyattached to spina bifida andhydrocephalus that can’t beignored.
This discovery has paved theway for a successful £60,000bid to the Heritage Lottery Fundto bring this wider history to life.
The history and contribution ofASBAH/Shine will berecognised as part of theexhibition, but to have it as theprimary focus would not tell thefull story, a story that needs tobe shared and for people tolearn about.
Why do it?Having spoken to many peoplesince I joined Shine, thequestion ‘Why are we doingthis?’ has been asked from timeto time.
Doing an exhibition could beseen as ‘something nice to do’,but with no real significantbenefits. So why do it?
I truly believe that it is afantastic opportunity to dosomething unique which willgreatly increase the exposureand awareness of spina bifidaand hydrocephalus to the widercommunity, both in and outsidethe UK.
It is a heritage that has suchdepth but has never beenlooked at, and it is anopportunity to give the spinabifida and hydrocephaluscommunity a voice.
On a personal level, I have learntso much already and I havebarely scratched the surface!
What’s going in it?I am hoping to make theexhibition an informative andinteresting experience foreveryone, as it will be open foranyone to visit its permanentdisplay at Shine’s Head Office inPeterborough. Some sectionswill also be mobile and takenaround the UK.
I am very conscious that itneeds to be fully accessible tocater for many differentaudiences and I really wantpeople to engage with it. Ipromise it will not be ‘medicallyfocused’ and there will be thingsto see, watch, listen, and totouch!
Once the exhibition is up, that’snot the end of it. History andheritage are constantly beingwritten, so there will be additionsin the future to ensure nothing is forgotten.
‘I truly believe thatit is a fantasticopportunity to dosomething uniquewhich will greatlyincrease the exposureand awareness ofspina bifida andhydrocephalus to the wider community,both in and outsidethe UK’
www.shinecharity.org.uk 9
Support and help
As I am writing this I am still only nine weeks into myrole, and I am learning more and more every day. Anexhibition is a subjective experience, so it really helpsto have as many perspectives as possible in preparingfor it, which is why I really welcome your input andsupport along the way.
I am always sharing what I am doing on my Facebookpage facebook.com/shine.marc.lupson so pleasecome and find me if you want to know more and getinvolved, or contact me [email protected]
Any messages of support are welcome and in my timeat Shine I aim to do the very best job I can for you!
Fundraising
Bees Shine On!A Championship match daycollection for Shine raised £450,
when Brentford FC took onNottingham Forest FC at GriffinPark on Easter Monday. The ideafor the collection came aboutwhen Shine’s Membership
Development Officer, GobiRanganathan, met Bees CEO,Mark Devlin, to explore thepotential to form a partnershipbetween the club and the charity.
‘Shine wants to be there for every
person affected by spina bifida orhydrocephalus,’ says Gobi. ‘Thisnew partnership is exciting, andthe money raised will help us torun support groups, events, andprovide clear information so thatour members feel confident andable to get the support they need.’
Shine volunteers helped out at
the event and enjoyed an excitinggame, which resulted in a 2-2draw.
If you would like to contribute tothe Matchday collection, textGIFT42 followed by £3 to 70070.
Wandering the Wolds for ShineClare West organised a 10 mile sponsored walk around theLincolnshire Wolds which attracted 10 other people andraised a fantastic £1,745! Clare has an 18 month old daughter with spina bifida.
10 www.shinecharity.org.uk/fundraising
The Freemasons’
Grand CharityThe Freemasons Grand Charityhas made a £35,000 donation tofund the salary of a DevelopmentCoordinator for the Shine40Plusnetwork. Since the Freemasons Grand Charity began operating in1981 it has been a keen supporter of Shine.
Shine40Plus allows people over 40 to share their experiences;
providing daily social interaction, comfort, and information aboutmanaging their condition and looking after themselves. This is thefirst group of people experiencing spina bifida and hydrocephalusto reach their later years and the creation of this network willenable them to share their knowledge and experience with oneanother, helping to alleviate feelings of isolation and anxiety.
Laura Chapman, Chief Executive of the Grand Charity,commented, ‘It is wonderful to be able to help bring peopletogether, ensuring they receive the guidance and support theyneed to move into the next stage of their lives with happiness and asense of belonging. Helping vulnerable people in our community iscentral to Freemasonry and we wish this project every success.’
www.grandcharity.org
Join Shine in Peterborough on Saturday 4th July for a family-
friendly bike ride and summer festival. Accessible routeoptions available. BBQ, entertainment, stalls, games and araffle with the top prize of a Carrera bike to be won! For moreinformation, go to www.shinemegacycle.org.uk or catch us
on Facebook search for: Shine MEGACYCLE Festival 2015
Wear Yellow and Shine
www.shinecharity.org.uk/fundraising 11
Fundraising
As many Together readers are
already aware, Wear Yellowand Shine is a fundraising
initiative which last year raisedover £20,000 to help everyoneaffected by spina bifida andhydrocephalus. We are excitedto tell you that in 2015 we will beunveiling a new look WearYellow and Shine! This is
advance notice to get ready forwhat’s coming! All the
information you need to takepart, whether as an individual, aschool, or an organisation, willbe available on the websitewearyellowandshine.org.ukand in the next issue of Together,as well as via social mediaforums. Please make a note thatSpina Bifida and HydrocephalusAwareness Week is 19-25th
October. We’d love it if you tookpart in Wear Yellow and Shine
events that week, but you canalso choose any day of the year,we really don’t mind!
If you would like to receiveinformation when it comes out,please email Ali Coutts,Community Fundraising Officer,
Or visitwearyellowandshine.org.uk
Gareth Picken has spina bifida and hydrocephalus,and is a keen sportsman. This year, 15 year-oldGareth from Cheltenham took on the amazingchallenge of completing 100 miles swimming and100 miles wheelchair racing in aid of Shine. Gareth
uses only his arms for these sports. Over sixmonths, Gareth has used every training sessionand competition to rack up the incredible distance,and completed his final three miles of wheelchairracing at the London Mini Marathon on 26th April. Hehas raised £790!
Wheelchair racing is a relatively new sport forGareth, who got his first racing chair in June 2014.He trained hard and soon reached the EnglandNationals – covering 100m in 20 seconds. MickyBushell, paralympic silver medallist, holds therecord at 14.69 seconds. Now Gareth is focusing onwheelchair racing and seated throwing. Mum Nicirecalls how, even though he was number one in hiscategory (S7) for swimming in 2014, ‘he would beplaced with the 10 year olds at the local swimmingclub, because he can’t keep up with the nondisabled adults.’ Gareth first became a member ofShine, after attending a Shine short break in 2013.
‘It was great fun – and a relief not to have to keepexplaining my disability.’
Now Gareth wants to encourage other youngpeople with disability to try new sports andovercome barriers. After finishing his GCSEs heplans to go to college to study for a BTEC Diplomain Sports Science. His advice for budding youngShine sportspeople?
‘Don't think you can't do things – you can, butdifferently. If you want to do something just do it –don't let your disability stop you.’ To support Gareth,go to his Justgiving page:www.justgiving.com/Gareth-Picken
Gareth Picken’s 200 milearms only challenge By Shine member,
Marcia Collins
Shine Family Portraits Competition WinnerWe are delighted to announce thatNicola Cope and her friend AmeliaCook of Haddington, Lincoln, are thelucky winners of the Shine Family
Portraits Competition. Nicola’s mum,Janette, said that she is ‘proud anddelighted!’
‘Nicola and I always enjoy readingthe news and information inTogether, and Nicola and Amelia had
great fun thinking up the idea for theportrait.’
They both win a canvas print oftheir super portrait!
Fundraising
12 www.shinecharity.org.uk/fundraising
Shine receives a donation everytime someone purchases aShine card as a gift. Redeemable in over 21,000 storesnationwide and online, the cards are available in two quantities:£10 is donated to Shine when you purchase a £50 card; and£5 is donated to Shine when you buy a £25 card.
Great Eastern Run and 5k FunRun 201511th October 2015 • Start 10:30amPeterborough, Cambridgeshire
Join the Great Eastern Run and run a halfmarathon or the 5k fun run for Shine! This course
is flat and fast and suitable for wheelchair users.
Visit www.perkinsgreateasternrun.co.ukto sign up. Closing date for entries is 5th
October 2015.
Give a gift. Give to Shine!
Great NorthRun 2015Join Team Shine and run in this year’sGreat North Run on 13th September 2015!
Last year 57,000 people took part – don’t miss outon being a part of the action in 2015! Ballot entriesnow closed – last chance to enter!Contact Cheyenne Graves T: 01733 421307 or E: [email protected]
Shine runners get a FREE Shine t-shirt or running
vest and sponsorship pack!
You can buy your card atW: ShineGiftCard.org.uk!
I feel very strongly about tellingmy story so that other Shinemembers, who need help withdaily living, know about directpayments and where to go forfurther information.
I lived on a farm with my parentsand sister. In 2001 I moved awayfrom home to CumbriaUniversity to study tourism. Isourced a good care agency thatassisted me with personal care –I had a brilliant time living thestudent life and achieving aHigher National Diploma (HND).
Returning home in 2003, Irealised that no help wasavailable for me, except from myparents. I contacted my caremanager who introduced meand my family to directpayments. (See the box forinformation about these).
My care manager assessed meas to what I could and couldn’tdo. I was then allocated about15 hours a week of fundingwhich I could use to pay forsome of my care. These hourshave increased over the yearsfollowing re-assessments andchanges in my circumstances. Icurrently have 37.5 hours worthof funding.
One of my first steps wasdeciding who I would employ tohelp with my care. The options
were to use an agency or toemploy someone myself. I optedto employ someone from thelocal area, as this let me choosewho I wanted.
The only snag to this option isthat all of a sudden I became anemployer. I had to think abouttax, national insurance, sicknessand holiday pay, and liabilityinsurance.
Luckily I found that there areorganisations that are set up tohelp with all of this. I use theIndependent Living Scheme whohave been brilliant all the way.Without their help I would nothave been able to complete thewages and legal information.
I now live on my own in a groundfloor flat in York. With thecombination of four carers andan agency I live a very full andactive life. I work two days aweek as a visitor receptionist ata museum taking money foradmissions - my carers take mein my adapted car, stay with me
and then bring me home again.They help me access the gymand go swimming at least twicea week! They help with theeveryday things such aspersonal care, shopping,housework and cooking but theone thing that is very importantto me is they enable me to meetup and go out with my friends.
I am Honorary Secretary forNorth and West YorkshireASBAH, attend committeemeetings, and help with theactivities that members takepart in.
Living with spina bifida,hydrocephalus, and epilepsycould so easily stop me fromliving an independent life, but Ihave been lucky to have beenable to use direct payments –they changed my life!
Feature
Want to know more?To search for details for your nearest direct payment, have alook at their website which has lots of helpful information
W: https://www.gov.uk/apply-direct-payments
Shine’s Support and Development Workers will also be able to
offer support and information – T: 01733 555988.
Route toIndependenceShine member, Claire Houseman, tells us how directpayments have made a difference to her life.
www.shinecharity.org.uk 13
14 www.festusfoundation.org C festus.fajemilofoundation @FFajemilo
Feature
Afolabi and Adewumi’s son,Festus, was born withhydrocephalus. Unfortunately,lack of immediate medical caresuch as surgery to insert ashunt, meant that fluid built upin his brain causing damagefrom the pressure and his headto swell in size.
Festus’ parents found it hard toget any information andsupport, and his conditionworsened, seriously limiting hisdevelopment. Now he needscontinuous, complex care. Appalled by the lack ofaffordable care, inadequatemedical facilities, harmfultaboos, and negative attitudesabout spina bifida andhydrocephalus in Nigeria,Festus’ parents decided thaturgent action was needed.They joined up with many otherfamilies who were facing thesame challenges and in 2006,FFF was born.
The opportunity to visit Shinebrought about by theCommonwealth ScholarshipCommission (CSC)Professional Fellowship hasenabled them to gain insights
into services for people withspina bifida and hydrocephalus,which they will use to developthe work in Nigeria.
The trio have had a busyprogramme, spending time withmembers, visiting Shinesupport groups, taking part inevents such as theShine40Plus conference andfamily weekend, and learningabout health campaigns suchas Go Folic!
While here, Shine hassupported their fundraising andmarketing by developing a newlogo, promotional leaflet,Facebook page, and website.
Afolabi shares:‘We have learnt so much,which we will use in Nigeria.Most of all, how important it isto sustain the vision, bemembership driven, andgenerate strong support andideas.
‘In Nigeria, there are nobenefits, and families affectedby spina bifida andhydrocephalus are left alone,exposed to risk, with no
support. Many of us simplycan’t afford the care ourchildren desperately need.Parents bring their children tohospital, to be told they needsurgery such as having a shuntfitted, then go away again,because they can’t afford it.Delays mean the conditions getworse – often, much worse,and this can be life threateningor can seriously harm a child’sdevelopment.
‘This is a public issue. We needgood policies, legal protection,medical facilities, affordablehealthcare, and public supportto ensure that people with SB/Hget the care they need, whenthey need it. Many people withdisability are marginalised andthat must change.
‘At the Shine events it hasbeen great to experience theshared sense of belonging.Before coming here, I thoughtno-one with spina bifida couldsurvive beyond the age of 30!Now we know that there areprobably many people withSB/H over 30 in Nigeria and willwork with them to raiseawareness and support.’
CommonwealthFellowship bringshope for NigeriaShine has recently enjoyed the presence of three Commonwealth Fellows, AfolabiFajemilo, his wife, Adewumi, and Badejoko Fabamise (‘BJ’) from the FestusFajemilo Foundation (FFF) in Nigeria. Here they share what this experience hasmeant to them.
Feature
www.festusfoundation.org C festus.fajemilofoundation @FFajemilo 15
BJ continues, ‘The level ofinvolvement of Shine membersis impressive. It’s a closenetwork and you work togetherto achieve results – that’s a bigplus! It’s not all about money.’
Adewumi shares, ‘We’veexperienced and learnt so muchthat we will put into practice,such as the MayBbaby and GoFolic! campaign to preventNeural Birth Defects.
‘In Nigeria, many children diethrough untreatedcomplications. We need to setup a continence clinic andtraining for professionals, andwill work with a neurosurgeonwho is passionate about this.
‘If we had a wish list it would beto have sponsorship for arepresentative from Nigeria tocome to the Shine 50th
Anniversary celebrations!’
Afolabi expressed sincerethanks on behalf of the Fellows.
‘We’d like to say a huge thankyou! The funding from the CSC,and all the support from Shine,is going to make such adifference to the lives of peoplewith spina bifida andhydrocephalus in Nigeria. Thankyou, Shine!’
Afoloabi andAdewumimeet Benny!
The FFF teamget Shine-d!
The CommonwealthFellows meet ShineChairman Richard Astle
16 www.shinecharity.org.uk C facebook.com/ShineUKCharity @SHINEUKCharity
Photo Page
Children, parents, and partners from allparts of the country took part in theShine Family Opportunity Weekend inCoventry this Spring – a fantasticweekend event! Part of the ShineLifelong Opportunities Programme,this event aimed to help parents whohave children with spina bifida andhydrocephalus feel more confident and equipped to manage the dailychallenges that these conditions canbring – and to have some fun andrelaxation along the way!
Here are some snapshots from anothergreat weekend...
Shine Family Opp ortunity Weeke
Photo Page
www.shinecharity.org.uk 17
ortunity Weekend
Health
Shine’s new HealthSuite now open
The idea for the Health Suite arose after our2011 survey showed that lots of members arenot getting regular health checks, and have fewopportunities to speak to professionals whounderstand their conditions.
A visit to the clinic will give you a chance to talkto three Shine staff members who are familiarwith the health challenges faced by many of you:Gill Yaz will address various aspects of physicalhealth and conduct health checks, Robin Barnattwill look at mental wellbeing issues, and KathyAllen will consider factors such as coping withdaily living, difficulties with cognition andmemory, and help that might be available for you.
If concerns come up, we can discuss these in alittle more detail, and think about ways of dealingwith things that arise, such as looking at activityplanning or goal-setting. If it seems that youcould benefit from further help, we would be ableto support you in contacting your GP, healthprofessionals, or relevant organisations.
The Health Team will also be present at variousShine events, including regional support groupsto promote awareness of the conditions andtheir effects, and we regularly hold sessions aspart of national events, such as the Shine40Plusconference and Family OpportunitiesWeekends. Further ‘Great Minds: PromotingMental Wellbeing’ events are planned, whichgive members the chance to meet one anotherand share experiences, as well as learning moreabout mental health and coping techniques.
To refer yourself to the Clinic, please contactShine on 01733 555988.
If you would like more details about the Clinic orthe Health Team, please contact us:
Gill Yaz, Health Development Manager: E: [email protected]
Robin Barnatt, Health Development Officer: E: [email protected]
Kathy Allen, Occupational Therapist: E: [email protected]
18 www.shinecharity.org.uk
On April 21st Shine’s new Health Suite was officially opened in Peterborough, where we shall beholding regular clinics. So we are now ready to start taking referrals.
www.shinecharity.org.uk 19
Health
DestinationFor a first trip abroad, or if your health meansyou need to be within easy travel of certainfacilities, such as a neurosurgical centre, pickthe country you want to visit, then search theinternet for neurosurgery (paediatric if you needsomething for your child) in the various regions.It will then be easier to pick a resort within acouple of hours travel, should you need suchservices while on holiday. For example, Spain'slarge coastal cities all have neurosurgicalcentres. Long cruises might be fine if yourcondition is stable, but they can be difficult toget off if you become ill.
FlyingFlying is fine for most people with shunts; if youwere told years ago not to fly, it's worth askingagain as things have changed. Some peoplewill have been told by their neurosurgeon not tofly for specific reasons.
InsuranceDo make sure your insurance covers you foryour existing conditions, and that you give themaccurate information about appointments andconfirmed future investigations. Don't rely onthe European Health Insurance Card (EHIC)when travelling to EU countries; it won'tguarantee access to the right facilities, or thatstaff will speak your language, and it won't helpwith the extra costs of getting home if you can’tget your flight. Companies such as FreedomInsurance Services – T: 01223 446914 – maybe able to help.
Getting ready to goYou might want to ask your hospital for a copyof your most recent scan on a CD-ROM or amemory stick, so if you need a scan on holiday,they can compare it to your last one. Get anyprescriptions you will need ahead of time, withspares, just in case, and a copy of your
prescription, should you need to show whyyou are travelling with certain medicines. Signing up to Shine Health Home Deliverymight help you get these things ready. Youcan find out more at W: shinehomedelivery.org.uk or T: 0800 023 8857 or E: [email protected]
Pack your tablets in your hand luggage, andif you have liquid medicine, put some in a100ml bottle, clearly labelled, and place it in aclear plastic bag at the airport. Pack someheadache tablets, and Imodium (for upsetstomachs). If you use ISC (intermittent self-catheterisation), all-in-one kits, with bags,can be convenient.
At the airportThe whole body scanners which use X-raysshould have no effect on your shunt, but themagnetic security arches have been reportedto reset certain programmeable valves. It issafer to err on the side of caution and avoidairport scanners.You should show your ShuntAlert Card (available from Shine on T: 01733 555988) and follow the guidelinesfor people with heart pacemakers.
On holiday...If it’s very hot, be sure to drink plenty - bottledwater is best. Most importantly, have fun!
It's holiday time again, and for many of us, it's a time to travel and explore new places. Travelling when you have spina bifida or hydrocephalus might need a little more preparation, but for most people it will be possible to get away for a great holiday. Here, Gill Yaz, Shine Health Development Manager, gives some tips to help you prepare.
Planning a Holiday?
SAMC
20 www.shinecharity.org.uk/SAMC
Hello everyone and welcome to the latest news from theShine Adult Members Council (SAMC).
It’s almost summer and time to start thinking abouthow we are all going to spend those glorious daysout in the sun, providing that we get some!
SAMC MeetingThe SAMC held their first meeting of 2015 onSaturday 31st January at Shine HQ. Former CEOJackie Bland, Development Manager, David Isom,Health Campaigns Officer, Martine Austin, HealthDevelopment Officer, Robin Barnatt, andExecutive Assistant, Val Stokes, joined us.
DevelopmentsSAMC priorities: Shine has achieved most of whatwas set out in the current five-year plan, which isgreat news. One issue outstanding is IndependentLiving/Housing, which will carry forward to thenext five-year plan.
Independence and Employment will be a priorityby the SAMC, as people with SB/H can havedifficulty in maintaining employment. Wediscussed several ideas, including how changesin your workplace can affect you, occupationalhealth ignorance, and how volunteering can helpin gaining employment. We will keep you updatedon progress.
More News Paul Manning, Lisa Cain, and Heather Doughty allattended the Shine40Plus conference in Bristol. Iattended the Shine Family Opportunity Weekendin Coventry – a fantastic weekend – and metmany children, parents, and partners from all partsof the country who all enjoyed the event.
Liz Potts will attend the Shine IndependentFutures residential event for adult members atHereward College, Coventry, in May, and JasonMerrill will be attending the Shine Summer Rez! InDevon for young people aged 12-16 in August. Wehave also heard from members raising questionsabout various issues. It is always good to hearfrom members so keep them coming!
Finally… a special thank youOn behalf of the SAMC I would like to say a fondfarewell to CEO Jackie Bland who left Shine inMay, and to thank Jackie for all the support thatshe has always given to the SAMC. Specialthanks also to Lyn Rylance who has given Shinemany years’ service and also retired in May.
As always feel free to get in touch via the linkbelow.
Michael BerginCommunications Officer SAMCE: [email protected]
SAMC update
This is Me 11-18s Club
This is MeNow that the holidays areapproaching, I’m reallylooking forward to gettingout in the sun and havingsome fun! From the chatsthat I’ve been having withsome of you guys overFacebook, it seems like youhave had the same idea!
By Nic Shaw, Shine’s Youth Work Coordinator
T.I.M - themascotI promised to giveyou an update, sohere’s the latest from our furry friend!
‘How the weeks whiz by! My ninjaskills have improved considerably, my speedhas improved to the point of being insaneand I still love to use my claws. Now I’mlooking to improve on my climbing skills, andam discovering new ways to wind up thedogs in the yard and do a runner!
If I don’t get to see you before,have a puuurfect summer anddon’t eat too many mice!’
www.shinecharity.org.uk 21
ScottishPower Foundation gives aboost to Shine’s Youth CouncilThe ScottishPower Foundation, which supportscharitable work throughout Britain, has given agenerous donation of £9,779.65 to support theShine Youth Council this year. This is fantasticnews! I am so excited to see what this grantwill help us do - in teaching and developingyoung leaders within the Shine Youth Council,and providing a better service and new eventsfor This is Me members as a result.
The ScottishPower Foundation grant willenable each of the council members, who livein different parts of the UK, to meet together.The passion of these young leaders is veryevident and it’s so important to be able to meetin person, to encourage, enthuse and then‘send them out’ with a fresh vision of how theycan use their experience to help other youngpeople with spina bifida and hydrocephalus.
Watch this space!
Shine CoffeeProjectThis summer whetheryou live in England,Northern Ireland orWales, Shine wants toget a coffee project inyour area, to meet upwith each other, hangout and have a laugh!To get involved, you can:1. Respond to a Shine Youth Council member’s
advert on Facebook2. Send me a message on Facebook3. Write, ‘I want a Coffee Project’ on the This is
Me Facebook group page
Summer RezSummer Rez is going to be happening on August10th-13th. The venue at Hannah’s in Seale-Hayne,Devon is brilliant! I’ve been there a few times andam always surprised at the stuff that you can getinvolved with. If you are not signed up on that trip,get yourself on it, it will be a blast!
Shine40Plus
I am a wheelchair user withspina bifida, hydrocephalus, acolostomy, and catheter.
In 2003, my husband and Idecided to do a camping tour ofEurope on our Goldwingmotorcycle and sidecar. Aftermany months of planning we setoff in June 2004. We lived inWest Wales at this time and itwas off to Southampton for the36 hour ferry crossing to Bilbaoin northern Spain. The crossingwas a bit rough at night butotherwise OK. This was mysecond time in Spain on thebike – being six inches off theground and on the wrong side ofthe road was quite challenging!
By 8am we were off the ferryand had started the 540 milejourney to my parents’ villa nearMurcia, where we arrived in theearly evening. We spent a weekthere lazing in the sun andeating and drinking.
It was soon time to pack up thebike and head off. We travellednorth on the east coast and inthe late afternoon startedlooking for a campsite as wehad not booked any! Then wetravelled through Spain intoFrance, northern Italy, andAustria, where we stopped for afew days before going ontoGermany and the CzechRepublic, where we spent five
days for a meeting with bikersfrom all over Europe.
Then back into Austria foranother bike meeting. Five dayslater, and with a punctured airbed, we started to head forhome, going back throughGermany and heading forBelgium. (We saw some of theNetherlands as hubby took hisonly wrong turn of the tourWITHOUT sat nav –impressive!) Then we were ontoCalais and the ferry home. Itwas great to be on the thecorrect side of the road again!
4,000 miles and one monthlater, what a fab time we had!
Europe Tourby Motorcyle
When we look back and reflect on our journey itcan sometimes seem overwhelming to see how farwe have come and the trials and tribulations wehave gone through to get here. Our success ispartly due to the people who have worked so veryhard to help shape our lives.
I feel the influence of my late maternalgrandmother every day. I am from an Anglo-IrishCatholic background. My grandmother lost herhusband during the Second World War and raisedfive children on her own, refusing to give them upto the orphanage as she had been advised.
She stepped up to the plate again when I wasabout six years old and the situation with myparents was difficult. She gave me a home when
my parents couldn’t cope, although at the time itfelt like I was being kicked out of the nest and Iwasn’t very grateful. Her actions in taking me inmeant that the family were not completely tornapart and there was no need for Social Services toget involved.
My grandmother was instrumental in getting meinto mainstream school which was difficult at thattime. I owe her so much. We all need a little helpalong the path of life and for all our victories needto acknowledge that behind them there wassomeone special who believed in us.
We’d love to hear from any members over 40about someone special who has helped in yourlife. Contact E: [email protected]
For my Grandmother
22 www.shinecharity.org.uk/shine40plus
Shine member Mandy Smith explains why being sixinches off the ground and ‘on the wrong side of theroad’ for 4,000 miles can be a good thing!
By Chris Fleming
Shine40Plus
www.shinecharity.org.uk/shine40plus 23
The Shine40Plus Conference inBristol on March 5th was acelebration of our generation,many of whom have survivedbeyond expectations into middleand older age. Shine eventsoffer far more than justinformation and this was noexception.
Ian Pople, ConsultantNeurosurgeon at SouthmeadHospital, talked about what toexpect as we get older withspina bifida and hydrocephalus.He explained what issues mayaffect those of us withhydrocephalus – balance,distance, spatial awareness,concentration, executive skillsand secondary anxiety, anddepression. He looked at whatthe future may hold, suggestingshunts should be reviewed on afive yearly basis and to haveregular eye checks. Hesuggested asking for a USBstick with our baseline scans on,and a resume of our pastmedical history to help otherclinicians, should we becomepoorly outside of our home area.
Shine staff led sessions onbenefits changes, anxiety anddepression, choosing awheelchair, and looking afterlegs, feet and tissues. Dr TrudiEdginton, from the University ofWestminster, and Robin Barnattfrom Shine did an introduction toMindfulness, and Kris Saunders-Stowe from Wheely GoodFitness had a group of us
exercising to music with greatenthusiasm.
Alison Mahraj, a Shine40Plusmember, gave a presentationcalled ‘Dear Body, Dear Shine’which vividly illustrated what it islike to live with spina bifida.There was also a great paneldiscussion with Shine’s HealthTeam and Dr Trudi Edington onthe challenges of getting older.
The whole event was reallypositive. It showed how we arealready making adjustments toour lives to enable us to remainindependent, and also what elsemay be available, should weneed it.
It was a wonderful day, for whichwe each paid very little andgained so much!
You can find out more onYoutube:bit.ly/AlisonMahrajbit.ly/IanPople
Shine40Plus National Conference
With grateful thanks to the Freemasons Grand Charity for their support for the Shine40Plus Network.
By Sarah Killick-Sturges
Benefits and Legal
24 bit.ly/ShineBenefits
is something we all think about but often never get around to
A bit of thought and financial planning can ensure that you keep control of all youown (your assets). A solicitor can advise you and make the necessaryarrangements for you. Here are some things that you may want to think about.
WillsBy making a Will you have the opportunity todecide who inherits your assets, such as yourfamily, friends, favourite charities, or a mixture ofthese.
We will all die one day. Yet if anyone dies withouthaving a valid Will, what they leave behind won’tgo where they want it to, but where thegovernment wants it to go. So making a Will cangive you peace of mind that what you want tohappen after you die will be taken care of for you,especially important if you care for a person who isvulnerable or has a disability.
Probate and Estate AdministrationIf someone dies without leaving a Will, there is aspecial procedure to obtain a ‘Grant of Probate’ sothat a family can access the person’s assets, butthis is more complicated than having a Will.
TrustsTrusts are a popular arrangement wheresomeone’s assets are legally owned andcontrolled by trustees for the benefit of others,including to benefit charities. Trusts may becreated during a person’s lifetime or once theyhave died, following the instructions in their Will.
Care, Capacity and Court of Protection The Court of Protection, established under theMental Capacity Act 2005, deals with issues inrelation to people who cannot make decisions forthemselves because they lack mental capacity.They may be elderly or vulnerable, have acongenital condition, dementia or mental illness, orhave had a head injury. Through the Care Act2014, local authorities have a duty to provide for avulnerable adult’s wellbeing. However, all theseissues can be complicated, so it is wise to seeklegal advice from an expert if you are not gettingwhat you are entitled to.
Planning for the Future
...making a Will cangive you peace of mindthat what you want tohappen after you die
will be taken care of foryou, especially
important if you carefor a person who isvulnerable or has a
disability.
bit.ly/ShineBenefits 25
Benefits and Legal
Attorneys and DeputiesPowers of attorney, known as ‘LPAs’ (formerlyEPAs) are usually made to give another personauthority to act on your behalf should you losemental capacity. By having an LPA in place, therewill be trusted people, called ‘attorneys’ to lookafter your affairs if you are not able to.
You may make an LPA covering your property andfinancial affairs, and/or your health and personalwelfare. You can also provide guidance for yourattorneys and instructions about the actions theycan take.
If you become unable to make decisions on yourown behalf and have not made a Power ofAttorney, a law firm can help your family andfriends to apply to the Court of Protection to beappointed as your deputy, though this is moretime-consuming and costly than making a LPA.
With thanks to Royds Solicitors of London for theircontribution to this article. For more information,Sarwan Ghuman and Tony Millson of Royds canbe contacted on T: 020 7583 2222, E: [email protected] or W: www.royds.comIf you are looking for a solicitor near you, the LawSociety have a free database and information tohelp at http://solicitors.lawsociety.org.uk/
New guides on benefits and disability rights Disability Rights UK provide information andguidance for disabled people on accessing good services and support, including education, work, independent living, benefits and health services, and what to do ifservices fall short. DRUK has just publisheda new guide on the rights that anyone livingwith a disability or health condition shouldexpect from services, education andemployment, and what to do if services fail tomeet expectations. The guide, called TakingCharge, gives an overview on planning and
managing yourlife, for instanceafter an accidentor diagnosis, oras life changes.It covers aspectssuch as personalhealth and socialcare, technologyand equipment,managing athome and withfamily, travel andmobility, leisureand sport, and
learning, working and contributing. The guidecosts £13.99 and complements the new 40thedition of the Disability Rights Handbook,which costs £18 if you receive benefits. Formore information contact:W: www.disabilityrightsuk.org T: 020 7250 8181 or E: [email protected]
By having an LPA in place, there willbe trusted people, called ‘attorneys’to look after your affairs if you arenot able to.
Shine Cymru
Shine Cymru’s Ser̂Bach group is nowone year old!
26 C facebook.com/shinecymru
After our inaugural event in Easter 2014, we’vemet regularly over the last twelve months withtrips to Parks, Zoos, and Science Museums inNorth and South Wales.
It’s been fabulous to see friendships forming andis the perfect opportunity for parents to shareexperiences and knowledge. We’re a friendlybunch and would love to see our group go fromstrength to strength.
An exciting programme of events has beenplanned for the year ahead.
Shine’s Summer Picnic is taking place on August
6th at the seaside resort of Barry Island. Whilst wewill pray for sunshine, no matter what the weatherthere’s plenty to keep both young, and young atheart, entertained! We’ve hired one of the
beautiful beach huts for the day. It will be aperfect meeting point for everyone and a safelocation to leave belongings, have a cup of teaand a chat, before exploring what Barrybados (asit’s locally known!) has to offer.
We’re also planning an exciting event in theAutumn for families in the Devon/Cornwall areaand are hoping to replicate the Sêr Bach group
by establishing our Shine Little Stars group.
Look for us on Facebook: Shine’s Sêr Bachgroup. New members are always welcome, nomatter where in the UK you happen to live.
For further details contact Sian Prince onE: [email protected] or T: 02920 813847
By Sian Prince
Shine Cymru fundraising eventsnot to be missed in 2015!
Phil Steele, BBC Wales’ Scrum V Pitch-Sidereporter and well-known after-dinner speaker, issupporting our fundraising in Wales.
4th July – Phil will be Guest Speaker at the NorthWales Friends of Shine Cymru’s annual dinner
and charity auction at the St George’s Hotel inLlandudno.
Tickets are £25 each. Contact Graham Catherallon 01352 752890 for information and tickets.
24th September – ‘Phil Steele’s World Cup’ – anevening of songs and stories from rugby nationsaround the world to mark the start of the RugbyWorld Cup, featuring the award-winning BridgendMale Voice Choir, Phil, and some of his famousrugby friends.
Tickets are £20 each,including light refreshments.Contact Sian Prince on
T: 02920 813847 or
E: [email protected] to purchase
your tickets.
Like rugby? Like to be entertained?
Shine runs a number of support and socialgroups for children, young people and adultmembers across Wales, England andNorthern Ireland – in a place near you or viaa Facebook group. If you are interested injoining one of our groups, contact T: 01733555988 or E: [email protected]
Shine NI
C facebook.com/ShineNorthernIreland 27
The First World Birth DefectsDay was marked in NorthernIreland by a joint event withRare Diseases Day. The eventtook place in the Lough ErneResort in Enniskillen.
Shine’s Cathy McKilloppresented information aboutspina bifida, and Martine Austin,our Head of Prevention,presented on the importance offolic acid. The event was openedby Gerard Guckian Chair of theWestern Health and Social CareTrust and in his address he alsomentioned the importance offolic acid. When taken at least
three months before conceptionand until at least the first threemonths of pregnancy, folic acidcan greatly reduce the risk ofNeural Tube Defects.
‘This was a great opportunity tospeak at an event which wasattended by healthcareprofessionals, patients/clients,carers and researchers.’
On the evening before, anevent was held for Shinemembers in the WestvilleHotel in Enniskillen. MarieMcGonnell and MartineAustin spoke at this event.
Inaugural World Birth Defects DayBy Mark Simpson
Sometime ago the Department of Educationand the Northern Ireland Assembly conducteda review of Special Educational Needs (SEN).The Special Educational Needs andDisabilities Bill is expected to become law in2016-2017 and will change how the supportand resourcing of children and young peoplewith disabilities in education is processed andresourced.
Along with representatives from severalvoluntary organisations in the Children withDisabilities Strategic Alliance, Shine NIEducation Adviser, Catherine McCurry, haspresented concerns about some of theinclusions in the Bill to the EducationCommittee, on behalf of Shine and our serviceusers.
We will keep you informed of progress and anyimplications, and how you can best advocateon behalf of the child or young person in yourcare, with support and information from Shine.
In the meantime, it is very important to follow indetail all current Statements of SpecialEducational Need, and the StatutoryAssessment Process which facilitates thembeing drafted.
If you have any queries or require furthersupport with this, do contact Cathy on T: 07789 616486 orE: [email protected] concern is too small, so lift the phone orsend an email!
Changes in SEN
Benny Bear
28 www.bennysblog.co.uk C facebook.com/ShineBennyBear
Hello Benny Members,
I was soooo excited when I wasasked to write a small piece forTOGETHER! I feel like a proper‘author’ now, writing in a realmagazine.
I know many of you already readmy regular postings on Benny’sBlog, but I thought it would benice for you to tell your friendshow they can become a BennyFriend too! Just ask a grown upto log onto Shine’s website andcomplete and return the BennyMembership form – simple!Members receive a miniatureBenny Bear and a birthday cardeach year and Benny picks aBirthday of the Month, eachmonth – so it could be you! Keepreading my blog,www.bennysblog.co.uk tokeep up with all the news, funactivities, and healthy eating tips.
Like many of my members, Ihave hydrocephalus too. When Iwas only three weeks old, I hada shunt fitted to help me feelbetter. I have several bookswritten about me to help childrenunderstand hydrocephalus. I amreally proud of ‘Benny GetsBetter’ and proud of myself too. I have had lots of hospitalappointments and learnt somany long and strange wordsfrom the Doctors. Words like:
Neurosurgeon, MRI scan, shuntand of course, hydrocephalus –but all of these are explained inmy little book. Daddy said I amextra clever as I have learned tospeak Greek too! ‘Hydro’ means‘water’ in Greek, and ‘Cephalie’means ‘of the brain’ in Greek.Amazing!
Do you remember my friendBella who was born with spinabifida? She is doing really welland out of hospital now and Icannot wait to introduce her toyou all. I am hoping that she toomay have some Bella Books,which would help children withspina bifida understand theircondition too. I think she is alittle too young to be an ‘author’,so as a very experienced‘author’, I may have to help!
I have had lots of fun meetingmembers and children in schooland at Shine events. I havevisited many schools, been onTeddy Bears Picnics, openedsupermarkets, and cheered onthe Brentford football team!Having hydrocephalus doesn’tstop me doing everything I wantto do – but oh, one thing, I mustremember to keep ‘hydrated’ bydrinking water.
If you have ideas about whatyou would like me to writeabout, where to visit, or to tellme about what you have beendoing, I would love to hear fromyou!
Until next time, ‘Be Brilliant’!
Benny
Benny’s Blog
We are delighted to have received a cheque for £11,848 from the DMThomas Foundation for Young People (formerly known as Hilton in theCommunity Foundation) to pay for new Bella Bear resources and thenew ‘Benny and Bella Club’ – more about this in the next issue!
STOP PRESS!
Since the last issue of Together, there’s been anumber of events (and non-events!) that havebeen taking place in the world of Shine.
Firstly, I was expecting to have had surgery backin the Spring, which didn’t happen (veryfrustrating!) but at the time of writing I’ve finallybeen given a date for surgery, which is a massiverelief, and am hoping to be well on my way to afull and long awaited recovery before my next lotof ramblings!
Despite the health niggles, I’ve been cracking onwith my Shine duties. I’ve had a Matchdaycollection at Burton Albion F.C, and BrentfordF.C, visited Caddington Village School, and TringSchool, and have met up with members in theWest Midlands, including Gemma Caldwell, EmLifford and Lyn Townsend (who is taking part inthe Shine Megacycle Festival this July!).
The Matchday Collections have been a first forme and Shine, and have proved to be great daysfor awareness and fundraising. Whilst the clubsaren’t the biggest names in football, they providegreat opportunities to reach thousands ofsupporters leading up to a match, as well as atthe match itself. Hopefully these connections will
be long-term and not just for a one-off bucketcollection. I hope to get other clubs on board,which will really help to spread the word aboutShine.
Talking of Birmingham, I was fortunate to takepart in the Para-Badminton demonstration at theBarclaycard Arena during the annual All EnglandBadminton Championships. Better still, I tookpart in my first tournament since February 2014,when I played in the Herts Para-BadmintonChampionships at Sir Frederic Osborn SportsCentre (Welwyn Garden City) in April. I took partin the Doubles and Mixed Doubles events, andcame away with a Silver and Gold Medalrespectively! Get in!
At present I’m looking forward to an event atLonsdale School in Stevenage where our Hertsmembers, and also students and parents fromthe school who have SB/H, can come along andget together. This may also lead to some excitingplans for Shine to form a partnership with theschool, which has amazing facilities. Watch thisspace!
www.shinecharity.org.uk/membership 29
Gobi’s Gossip
Gobi’s GossipHey everyone! It seems like an age ago since my last update and, as always,there’s plenty of gossip to pass on to you all!
We’re delighted to report that Gobi hashad his surgery and is recovering well!
STOP PRESS!
Events Information
30 www.shinecharity.org.uk
Shine’s Lifelong Opportunities Programme 2015
Shine’s Summer Rez!
Organised lively activities including archery, musicworkshop, taiko drumming, kite �ying, arts andcrafts (including glass painting) and jewellerymaking. There will also be lots of opportunities
for socialising.
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To 9nd out more about this event or request an application form contact: Joan or Denise T: 0113 255 6767 E: [email protected]
Shine, 64 Bagley Lane, Farsley, Leeds LS28 5LY �������&�(,��#������
A residential event for young people aged 12 – 16 years withspina bi9da, hydrocephalus or intracranial hypertension.
Places are limited so please register yourinterest as soon as possible. Closing datefor applications 27th March 2015
Monday 10th August –Thursday 13th August
2015
Venue:
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This is an online event with the opportunity to share your concerns on various issues
Google Hangout Programme
Contact Robin Barnatt for further details, and to receive an invitation linkE: [email protected] or T: 01733 555988
For technical queries, contact Darren Fower E: [email protected] or T: 01733 555988
June 2015 – September 2015
Reg Charity No 249338
Wednesday 3rd June 2015
bowel issues
Wednesday 10th June 2015
bowel issues
Friday 10th July 2015
shunts and effects on thinking
Monday 3rd August 2015
cord issues
Friday 4th September 2015Shunt talk
Tuesday 22nd September 2015
Robin Barnatt at least two days before stated date.
Events Information
C facebook.com/ShineUKCharity 31
Other events coming up soon:New Shine events are regularly created, so see W: shinecharity.org.uk/events for information.
Here are just a few below, with the person to contact in Shine for more information:
Shine in the South Family Afternoon and Teddy Bear’s Picnic, Brooklands Pleasure Park,
Worthing, Sunday 5th July, 2pm, contact E: [email protected]
Great Minds, Taunton, Friday 18th September (time and venue to be confirmed) contact
Shine NI Day trip to the Zoo, Wednesday 12th August, 10.30am
E: [email protected] or T: 07816 966863or E: [email protected] or T: 07816 966866
Shine40Plus Health & Wellbeing Event, Thursday 8th October, Sports Wales National
Centre, Sophia Gardens, Cardiff. For further details, contact Sian Prince, Regional Co-ordinator,Wales and South West England, on E: [email protected] or T: 02920 813847
Family Fun Day, Newquay, Cornwall, October 2015 (date and venue to be confirmed).
For further details, contact Sian Prince on E: [email protected] or T: 02920 813847
Please contact Joanne Tailor by 14th July 2015 to book a place. T: 01959 534618 E: [email protected]
Reg Charity No 249338
Cost: £10 per head to include a buffetlunch and refreshments
Venue: Motability Operations,City Gate House,22 Southwark Bridge Road,London SE1 9HB
Wednesday 22nd July 201510:30-15:30
Topics to include:
• Lifestyle
• Diet
• Fitness and exercise
• Wellbeing
Working in partnership withCity Bridge Trust
Healthy Living Skills Workshop
