Together issue 15

Inside: Shine Awards 2014 Competition Update on benefits

Raising theroof withFrank

Latest Shine Healthdevelopments inside...

Issue 15

GIVE A GIFT. GIVE TO CHARITY.EVERYONE WINS!

Visit: www.shinegiftcard.org.uk to purchase yours today!Reg Charity No 249338

40 gift for the recipient to spend and 10 donation to Shine.

20 gift for the recipient tospend and 5 donation to Shine.

25

Redeemable at over 21,000 shops and online stores!

50

3CONTENTSP4 News

P5 Shine Social Media

P6 Shine Family Portrait Competition

P7 Awareness Week 2014

P8-9 Oxford John Radcliffe Childrens

Hospital

P10-11 Shine Awards 2014

P12 Go Folic!

P13 Feature: Body Image

P14-15 Shine Health

P16-17 Feature: Frank St John

P18 Chairmans Challenge

P19 Fundraising for Shine

P20 SAMC Update

P21 This is Me Club

P22-23 Update on Benefits

P24 Benny and Bella Bear

P25 Gobis Gossip

P26-27 Shine40Plus Update

P28 Shine Cymru

P29 Shine NI

P30-31 Upcoming Events

Submission dates for summer edition Register of interest to submit: 16/03/15 Final date for submissions: 17/04/15 Publication date: June 2015

Together Editor: Tom ScottDeputy Editor: Amber Stokes

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]

I hope 2015 has got off to aflying start.

We have started the new yearwhere we left off the old withlots going on across theShine membership!

In this issue you will findexciting news regarding the progress of ShineHealth (page 15), great photos from the 2014Shine Awards ceremony and all the latest newsfrom our ever-incredible Shine fundraisers!

Our features in this edition lead us to a meetingwith rising stage star, Frank St John (page 16),and an honest challenge from Marcia Collins(page 13). Amber Stokes visited a pioneering newclinic serving our young members in Oxford seeher report on page 8.

Gobi Ranganathan brings us up to date with all hislatest gossip and this issue is packed full ofregional stories, activities from our thriving This isMe and Shine40Plus groups, all the latestcampaigning news, and details of the latestSAMC developments.

Youll also find information on upcoming events,benefits updates, social media progress, andmuch, much more!

If you like what you see, or would like to seesomething different in the next Together, just get in touch. We love to hear your thoughts and ideas.

E: [email protected]

Cover photo: Frank St John Taken by: Tom Scott

Welcome to Together

A Happy NewYear to you all!

News

Shine has launched its veryown gift card which meansmoney is donated to Shineevery time someonepurchases a card as a gift.Redeemable in over 21,000 stores nationwide andonline, the cards are available in two quantities:10 is donated to Shine when you purchase a 50card; and 5 is donated to Shine when you buy a25 card. You can buy your card here W: shinegiftcard.org.uk

Ann Wright uses her trike regularly as amobility aid, but has been refused on the tube,where they have a no cycles rule.

Ann has therefore been campaigning forTransport for London (TfL) to allow her to useher trike on tubes, trains, and dial-a-ride buses.The TfL granted her use of the trike for one dayon the Jubilee Line to attend its Access AllAreas event in October 2014, which broughttogether disability charities, members of thepublic, and transport leaders to help raiseawareness of the challenges of using publictransport for people with disabilities.

Ann said: I enjoyed the day and we made apoint, but we need to change peoplesperceptions. My trike is my mobility aid and Ishould be able to take it on the Jubilee Lineevery day. Ann has since continued to raisethe issue with TfL and other transportorganisations to get better access in the future.Stay tuned for more on Anns campaign!

Shine Membercampaigns totake her trikeon the tube

4 www.shinecharity.org.uk/media-centre/news

Shine is welcoming three visitors from Nigeria inMarch who have been awarded a CommonwealthScholarship Commission (CSC) ProfessionalFellowship for three months.

One of the Fellows, Afolabe Fajemilo, contactedShine in 2013 for support in developing services inNigeria where he has founded the organisation, theFestus Fajemilo Foundation (FFF). Afolabe startedthe foundation after he and his wife experiencedgreat medical and social difficulties when his son,Festus, was diagnosed with hydrocephalus.

Afolabi will be joined by his wife Adewumi Fajemiloand FFF Programme Officer Badejoko Fabamise,who hope to gain insight and learn key skills toinform the development of the organisation.

Shine has developed a comprehensiveprogramme that aims to give the Fellows a detailedinsight into our direct services, and they will bespending time with several Shine staff membersduring their stay.

Please join us in giving them a warm welcome!C facebook.com/festus.fajemilofoundation

CommonwealthScholarship

Give a gift.Give to Shine!

C facebo ok.com/ShineUKCharity @SHINEUKCharity 5

Social media

Gill Yaz, Shines Health Development Manager, isavailable on Facebook and would be happy to help

you with any questions you may have. Why not

friend her on Facebook and get in touch?

Social mediaSocial media is a fantastic way for our members to keep in touch with us and to see whats goingon across the growing Shine community. We love being able to see what you guys get up to andits a great way for us to celebrate your fantastic achievements! Most of Shines Health andEducation teams, and Support and Development Workers, are on Facebook too, so its an easyway for you to get in touch for advice.

If you need support to get involved, please connect with Shines Media Development OfficerDarren Fower onC facebook.com/Shine.Darren.Fower or E: [email protected]

10,886 14,703Shines social mediapresence in numbers...

Gill Yazs social profile

facebook.com/Shine.Gill.YazE: [email protected]

Many people have started sharing their own short filmsas part of our #Shinereflections campaign. Watch thefilms here W: http://bit.ly/Shinereflections

Did you know that

there are numerous

regional Shinesupport groups on

Facebook? Theyre

a great way to meet

people in your area

and to get advice

from a Shine Supportand Development

Worker.

6 http://stores.ebay.co.uk/ShineUKCharity

Nikki said: Finley is the most caring, supportiveand generous big brother! Being a sibling to achild with a disability can sometimes be tough,but it can also create an unbreakable bond.Everyday we treat our boys exactly the same, sowe make sure Finley has special time just withMum and Dad after Ethans hospital stays.

Here at Shine we loved how Finley had drawnEthan on the wheel and it got us thinking. Perhapsyour child has drawn a picture of your family at

school, or perhaps youve got a painting stuck toyour fridge door? Wed really like to see yourfamily portraits and we want to give theopportunity for everyone to get involved whetherthey have a disability or not.

Enter our competition: email us a photo of yourfamily portrait drawing, or send a copy to us at theShine Head Office. The lucky winner will win acanvas print of their family portrait!

Shine familyportraitsBack in October 2014, Shine member Nikki Dalgarno, shared a fantasticpicture on Facebook that her son, Finley, had drawn of his family. Nikkiwas so proud of Finleys picture that she got it printed onto a canvas.

Send entries to: Shine 42 Park Road,Peterborough, PE1 2UQ or email E: [email protected] by13th April 2015

Name

Address

Postcode

Telephone number

Email address

Shine family portraits entry form

Finleys excellentfamily portrait!

Competition

C facebo ok.com/WYAS 7

Thank you to everyone that got involved with Wear Yellow and Shine for Spina bifidaand Hydrocephalus Awareness Week 2014.So many of you held events for Shine; heresa roundup of just a few:

Abigayle Bartaby was sponsored to dye her hairbright yellow during Awareness Week and raised344.97. She also hosted a Benny Bears Picnicat Irchester Country Park in Wellingborough,Northamptonshire. One of the raffle prizes at thepicnic was the incredible Benny Bear cake, bakedand donated by Jo Stanley. On her JustGivingpage Abigayle says, This is my way of givingsomething back to such a great charity that hasdone so much for so many!

The Skem Men-Aces are a Skelmersdale footballteam exclusively for adults with learningdisabilities, led by Shine supporter Carl Eaton.They held a charity football match on 24th Octoberagainst their local councillors and raised 1000 forShine. On his JustGiving page Carl says, Thischarity is close to my heart as I have spina bifidaand I am also a right-leg amputee, so it is reallyimportant that I always try to give something backand repay the superb support I was given throughthe hard times in my life.

Hampton Vale Primary School in Peterboroughhad a Wear Yellow and Shine day on Friday 7th

November. This event raised 299.21. Shine wasinvited and Benny Bear helped Tom Scott presenta special school assembly, explaining spina bifidaand hydrocephalus and Shines work. Benny saidit was great to meet everybody and that heparticularly loved the school song!

Hanna Hindmarsh, whosedaughter has spina bifida,held a Wear Yellow andShine event in Guterslohin Germany at a second-hand book shop at herlocal army barrackswhere her husband isbased. They had buy-one-get-one-free books, coffee and cake, andcraft stalls. This event raised a fantastic 1000!

AwarenessWeek 2014

#ShinereflectionsLast year, Shine launched a brand-new initiative to help boost awareness. #Shinereflections is aninnovative film campaign which reflects what itslike living with spina bifida and/or hydrocephalus.Some of you have already shared your short films, but wed love to see more! Find out moreonline at W: http://bit.ly/Shinereflections

We have raised a HUGE20,796.16 so far for Wear Yellow and Shine 2014 and still counting!

Awareness Week 2014

Feature

Oxford John Radcliffe ChildrensHospital Multidisciplinary Clinic

Angela Downer, UrologyNurse, Oxford JohnRadcliffe Hospital The more I saw patients withspina bifida and the more Iheard them talk about having tosee specialists at different timesof the year, the more I found itunacceptable. While it might becommon for them, it should notbe normal, and weve provedthat with our clinic.

It first began with Leigh and herdaughter Jamie who hasspina bifida. They both workhere at the hospital and told mewhat would work from theirperspective, having gonethrough similar challenges asthe families who attend theclinic. So we got together andcreated the multidisciplinaryclinic.

We like to think of it as an MOT a clinic you only have to attendonce a year. We hold two clinicsin a day and the children cansee a range of specialists in just3 hours, including a urologynurse and neurosurgeon.

It takes a lot of organising toarrange the appointments withthe specialists, but we also try tomake it personal, so that peoplewho live near each other cancome on the same day, forinstance. Children that go tomainstream school, might notget to meet other children withspina bifida, so we have foundthat it has brought familiestogether. People often meethere at the clinic and developgreat friendships and stay intouch outside of the clinic its areal community now!

The clinic has evolved andimproved since its inception andwe are now looking to expand iteven further. Were hoping toget funding for a play specialistto come in to entertain thechildren while they are waitingto be seen, and we also want toget a psychologist to come infor each clinic, as well as anOccupational Therapist and aPhysiotherapist.

Were also looking to introducepreventative approaches forthings like toe curling. Parentsmight think, things can be muchworse with something like toecurling, but we want to help withand prevent, even the smallthings, to make even more ofan impact on a childs life.

In November 2013, Oxford John Radcliffe Childrens Hospital launched a newmultidisciplinary clinic for children with spina bifida the only one like it in the UK.Shine staff started attending the clinic in May last year, and have been given theopportunity to have a stand at each clinic. But what is so unique about thisinitiative? Amber Stokes caught up with hospital staff and a Shine parent memberto find out more.

8 www.shinecharity.org.uk

www.shinecharity.org.uk 9

Kate Mercer, Shine member and motherof MichaelMichael is 4 and a half. He attends mainstreamprimary school and has myelomeningocele(covered) spina bifida. He uses a frame andsometimes a wheelchair. His prognosis at birthwas that hed have bladder and bowel difficultieswith very limited mobility, but so far, hes surprisingeveryone. He is fully potty trained and can walkshort distances unaided.

Weve been faced with a number of challengeswhen seeing specialists about Michaels health.We have to make several appointments with fourdifferent consultants, and have regularappointments with the orthotics department,physiotherapists and a community paediatrician.This interferes with Michaels schooling andweekly routines, and we also have to arrangechildcare for his younger brother. Not to mentionthe problems it causes to our own patterns, asboth my husband and I work full-time.

Because of this, I find that we also sometimeshave to act as a communicator betweenconsultants. Whilst Im confident notes are wellrecorded, we provide context and information fromour visits from other specialists during theappointment. Sometimes this is difficult becausewe dont have the necessary expertise and it canbe hard remembering the details when weeks ormonths pass between visits.

The Oxford John Radcliffe Childrens HospitalClinic offers such a welcome and innovativeapproach to putting kids and families needs first.Because it runs like clockwork, we haveundoubtedly saved an enormous amount of timehaving all the appointments in one day I cantoveremphasise the difference this makes itmeans just one day off work, rather than eight! Butmore importantly, it means there is less impact onMichael missing school.

The clinic also has a wonderful sense ofcommunity. When Ive attended otherappointments, you tend to be in a waiting roomwith a mixture of patients, which can beimpersonal and can add to your isolation. At theclinic, however, we have met other children andtheir families who are facing similar challenges.

The whole team at the clinic are brilliant. Theconsultants are more immersed in the issues ofspina bifida and they are much more preparedand need less context from us, which is great. Thenurses and administrators are extremely skilledand you feel safe under their care. Theyrecompassionate and talk to Michael directly, whichis important, and they give honest information tous, rather than couching it. We moved furtheraway, but we still take Michael to John Radcliffebecause we dont want him under any other team this is a testament to what we think of the clinic.

If you are interested in getting an appointmentat the clinic, speak to your GP to be referred.

Feature

Michael Mercer

Because it runs like clockwork, wehave undoubtedly saved anenormous amount of time havingall the appointments in one day Icant overemphasise thedifference this makes...

Shine Awards

10 www.shinecharity.org.uk/shineawards

Shine AwardsOn the 20th November 2014, we celebrated all the fantastic people that makeeverything at Shine possible at the fourth annual Shine Awards. Fundraisers,volunteers, and professionals joined Shine staff and members at Coloplast,Peterborough for an emotional and inspirational afternoon of awards, whichfollowed the Shine AGM.

Sisters Miriam and Joy Haizeldenwere joint winners of the ShineYoung Achiever Award

Liverpool OT students jointly wonShine Volunteer of the Year

Sasha Burn won the ShineProfessional of the Year Award

www.shinecharity.org.uk/shineawards 11

Shine Awards

Shines Liz Cook presents Jessica Hodge

with Young Fundraiser of the Year Award

Jackie Moore won the prestigious John andLucille Van Geest Award for OutstandingService to the Shine Community

Shine CEO presents Hannah Whitlockwith the Fundraiser of the Year Award

Shine Chairman Richard Astlepresents Jo Baxter with theLifetime Contribution Award

The Bell,Dovey/Ratcliffeand Dalgarnofamilies all wonShine BeaconFamily Awards

Hosts of the Shine 2014 Awards

Campaigns

Progress!By Martine Austin, Health Campaigns Officer

I can hardly believe that yet another year hasflown past already, but its great to be able to lookback on 2014 and seen how Go Folic! hasprogressed onto another level with even greaterrecognition achieved!

You may remember in the last issue that I hadbeen Go Folic!-ing in Northern Ireland. Things areprogressing well, and theres a great deal ofmotivation to raise awareness of folic acid on anall-Ireland scale. I hope to be able to report backmore on this next time. There is also growingsupport in Wales, and after conversations with theChief Pharmaceutical Officer, we have beeninvited to tender for a pharmacy campaign inWales for 2015.

Back in England, we continue to increase our profile amongst both women and health professionals. I have attended a number of professional events and held a series of refresher sessions about folic acid for community midwives. As a result, we have been able to identify some

additional barriers to communicating healthmessages within certain communities. Were nowworking with a Community Cohesion Manager toidentify ways of engaging and training healthchampions from within the community to helpdeliver important preconception messages.

Anencephaly Support GroupThe new Anencephaly Support Group has beena resounding success, with 128 members joiningwithin the first three months. I never anticipatedsuch a response and have been overwhelmed bythe lovely comments from our members about themuch-needed support were now providing.

Common themes have been the lack of supportand information after diagnosis, both about the

condition itself, and how to reduce the risk ofrecurrence; lack of information about thechoices available; and also lack of support

through future pregnancies. Thisconfirms the need for this importantwork, and we are hoping to seekfurther funding to enable us todevelop this area.

Many of our anencephaly mums arecommitted to raising awareness, and Imust say a special thank you to LisaMarie Chapman. Although open to allfamily members, the group mainlyconsists of mums, so Im delighted tohave recently added another adminto the group dad, Ian. Ian and hiswife have a young daughter, buthave been through the devastatingdiagnosis of anencephaly threetimes, so he brings a lot ofpersonal experience to thegroup and wants to helpencourage more dads toparticipate.

C facebook.com/groups/ShineAnencephalySupport

The new Anencephaly Support Group hasbeen a resoundingsuccess, with 128members joining withinthe first three months.

12 C facebook.com/GoFolicUK


What do you think of when you hear the wordsbody image? Do you think about the way youlook? Your shape? Your posture? The way peoplelook at you? Or do you think about how you comeacross to other people? Maybe its all of these.

I wanted to talk about how we think about bodyimage, because it's a big thing in our society.Having perfect skin, the perfect body, being acertain size, cosmetic surgery to correct orenhance something about ourselves these areall things people think about today. But as adisabled woman, I feel great sadness that we aregetting to the point where we do not see what isbeyond the superficial.

Often, for many of us, we have to fight againstpeople who see our bodies as imperfect ordeformed, or something that needs to bechanged because we do not look like able-bodiedpeople.

I have seen two wonderful photos recently. Onewas of a lady who was wearing a bikini andsunbathing. We are often inundated with thesetypes of images, but what was different about thisphoto was that the lady had a colostomy bag. Heraim was to show that she is proud of who she is.She didn't want to hide the fact that she had abag, but rather, that it was a part of her. We havebeen raised to believe that showing anything likethis is wrong or something to hide, but there arethousands of people who have stomps like this, sowhy shouldnt it be something that can be shown?

The second photo was posted on Facebook byShine member Sonia Reains, who shared a photoand video of her teenage son, Dylan, showing offhis back as part of the #shinereflections initiative.I could have cried with pride that he wanted toshow his back to everyone, because this might bedifficult for many of us to do. Could we feelcomfortable enough with ourselves that we couldsay: Hey, look this is my back, it's got a fewscars, but its my back and I am proud of it?

We cannot change the way we look or how we are perceived by others. But we can think about howwe feel about ourselves, which is the mostimportant thing. If we know that we feel good, whocares what other people think? Who cares whatwords are given to describe us by others; its thewords we choose to describe ourselves thatmatter. We have to make ourselves proud of whowe are as individuals. Body image isnt just aboutwhat we look like on the outside, its how we feelon the inside.

Body imageBy Shine member, Marcia Collins

Shine member Sonia Reains posted this greatphoto of her son, Dylan, on Facebook.

We have to make ourselves proudof who we are as individuals. Bodyimage isn't just about what welook like on the outside, it's howwe feel on the inside.

Feature

14 www.shinecharity.org.uk

Health

Shine Health has taken some great stridesforward since the last issue of Together, withthe first pilot health checks taking place in ourbrand new health suite at Head Office.

Three members volunteered to be the first everguinea pigs for this service, and by the timeTogether lands on your doorstep another groupwill have benefited from this exciting newdevelopment.

SAMC member Jason Merill was one of thefirst to volunteer, and was full of praise for theholistic health appointment offered by HealthManager Gill Yaz, Health Advisor RobinBarnatt, and Occupational Therapist Kathy Allen.

It was great tohave a check thatlooked at me as awhole person, andto know that thepeople doing thechecks understood spina bifida/hydrocephalus andreally wanted me toget the besthealthcarepossible.

Shines decision to raise the profile of its healthsupport services and further develop its healthwork is driven by two important factors:

1. The inadequate level of health supportoffered to people with spina bifida andhydrocephalus

2. The lack of action by Government on theprevention of NTDs

Both issues are raised passionately andfrequently by Shine members, both through

social media, at events, and via the ShineAdult Members Council (SAMC).

Shine has responded by launching three newinitiatives under the new Shine Health banner.These initiatives aim to help support members,improve services and protect both mothers andchildren from unnecessary risk from neural tubedefects, which not only lead to spina bifida, butalso to anencephaly, where the baby has nochance of life a heartbreaking situation forexpectant parents, as members of Shines newAnencephaly Support Group will testify.

Shine Health

Shine Health

Home Delivery

Shine Health Home DeliveryBuilding on a pilot relationship with BullenHealthcare, Shine Health Home Deliverywill offer a tailored service for Shinemembers who need regular stoma andcontinence products offering prompthome delivery which can include yourprescription drugs too. We hope that byproviding a service which provides allyour continence and prescriptionrequirements in one place, well takeaway some hassle that you dont need.

Staff specially trained in dealing with spinabifida and hydrocephalus issues willmanage the service and be on hand toremind you when you need newproducts/prescriptions, guide you throughchecks on what you need, and be there foryou if you have any difficulties. All Shinemembers will receive a letter from meexplaining more about this service in March.

Shine CEO, Jackie Bland, explains some exciting new developments

Health


Shine HealthHUB

MayB-babyMayB-baby will build on Shines four yearold and very successful Go Folic!campaign, extending advice beyond theneed for folic acid prior to conception toinclude the other factors that contribute toa healthy conception, pregnancy andbirth.

MayB-baby invites all women toacknowledge the possibility that they mayone day become mothers (rather than justfocusing on women who are trying for ababy) and aims to give them the best,most timely advice to help ensure theyminimise their risk of both spina bifida andhydrocephalus.

Over the next year Shine CampaignsOfficer, Martine Austin, will develop arange of materials and a new websitewhich we hope will put all this advice andinformation in one place in an attractiveand accessible format. Eventually wehope that MayB-baby will developmaterials aimed at younger women andgirls, gently preparing them for the daywhen they may one day have a baby, andbeginning to reinforce the message tothem about the role of folic acid and otherhealthy living measures in preparation formotherhood.

This will help to address the problem thatmany women have just not encounteredadequate advice on planning andmaintaining a pregnancy by the time theyfind themselves pregnant.

To contact Martine, who also co-ordinatesShines Anencephaly Support GroupE: [email protected] or T: 01733 421349.

Health HubThe Health Hub aims to offer all-roundsupport to people with spina bifida andhydrocephalus, providing health checks forthose able to visit the health suite, andtelephone, and online support to anyonewith SB/H in need of help. All Shines healthservices staff are fully qualified nurses orOccupational Health Practitioners. As wellas offering general help, Robin Barnatt alsospecialises in keeping people mentallyhealthy. Gill Yaz, who manages our healthservices, has almost twenty yearsexperience in working with people whohave SB/H and parents diagnosed with anNTD pregnancy. We also have nurses onthe staff in some of our regions and wehope there will soon be a regional healthlead in each regional team.

Through our Health Hub work we can offersupport with any health issue affecting ourmembers. We not only offer advice but canhelp you in managing your relationshipswith the health services that you accesswithin the NHS and elsewhere. To accessthese services you can contact our healthstaff via e-mail E: [email protected]: [email protected] E: [email protected] the phone T: 01733 555988 or via C facebook.com/Shine.Robin.Barnatt, C facebook.com/Shine.Gill.Yaz, C facebook.com/Shine.Kathy.Allen.

The health team welcome all your calls andenquiries.

Shine Health

We not only offer advice but canhelp you in managing yourrelationships with the healthservices that you access within theNHS and elsewhere.

16 www.shinecharity.org.uk/shinespotlight

Shine Interview

To be Frank...From the first moment with Frank I wasinstantly struck by how bright, enthusiastic,and incredibly polite he is no doubt allattributes which have led to his considerablesuccess.

We meet in the reception area at ChichesterUniversity, where Frank is studying for adegree in English Literature and CreativeWriting. However, I havent come here to readFranks work; Ive come to hear him sing.

Frank, who has hydrocephalus and impairedvision, sings with the University of ChichesterEnsemble Group and is currently rehearsingwith his fellow students as they prepare tostage Gilbert and Sullivans musical Iolanthe.After meeting we rush to the rehearsal spaceso that Frank can rejoin the session, where heshares a joke with friends whilst waiting to becalled over to perform his part.

I have no idea what to expect in terms of thesound they are going to produce, but I donthave to wait long to find out. The twenty or sostudents separate into two groups and soonthere is an impressive sound of hearty singingand choreographed footsteps reverberatingaround the room. It is at this point that Franksmother, Angela, arrives from London, and webegin to chat.

For a moment we both watch Frank as thegroup chant their lines, breaking off in mid-flow to receive instruction, and then gatheringback their choral momentum. Angela is armedwith a catalogue of Frank-relatedmemorabilia; cuttings, programmes, awards,and certificates bulge from multiple folders.We begin to work our way through them,Angelas soft Scottish accent proudly detailingFranks impressive set of achievements.

Together Editor Tom Scott gets tuned in to Shine member Frank St John whoisnt going to let hydrocephalus or multiple shunt revisions get in the way ofhis singing career

We begin to work our way throughthem, Angelas soft Scottishaccent proudly detailing Franksimpressive set of achievements.

Shine Interview


At 21, Frank is already an awardwinner, having twice won theaccolade of St. BernardsSchool, Young Musician of theYear in both Year 12 and 13.These achievements at theSlough-based grammar schoolcame in tandem with reachinggrade six on the saxophone,despite at the age of nine beingtold by a hospital consultant thathe would never pass a publicexamination due to memoryproblems!

Frank also sings as a part ofboth the National Youth Choirand the prestigious LondonYouth Chamber Choir. As a firstyear undergraduate he won theprincipal role in his universitysproduction of Mozarts TheMarriage of Figaro, and just asimportantly (if not more so!) hesang with Mick Jagger and theRolling Stones at their 50thanniversary concert in the O2Arena.

The rehearsal eventually breaksfor lunch and Frank dons theone-off t-shirt which was givento him at the Stones gig, and we

talk more about his experienceof combining his stage careerwith growing up having what hismum terms, a brittlehydrocephalus.

Ive had twelve shuntrevisions...I think! Frankrecounts. He says hes had hisfair share of touch-and-gomoments, with shunts failing,but with the help of someamazing neurosurgeons at theJohn Radcliffe and GreatOrmond Street Hospitals, Frankhas managed to forge on withboth studies and extracurricularactivities. As defining as thetough times can be, these reallyarent the focus for Frank andhis family.

He beams about singing,compliments the help from theRNIB in supporting his singingover the years, and encouragesothers with hydrocephalus tonever compromise when youneed extra support to achieveyour goal. Frank cites anexample of this he onceneeded some music to becopied in a larger size to

accommodate his low vision;initially this seemed a hassle tothose in charge, but Frank stoodhis ground after all, how washe going to sing if he couldntread the music?

Frank undoubtedly has highambitions, but he doesnt expectanything to fall into his lap, andhis last piece of advice sums uphis attitude:

Whatever it is you are goingafter in life, really work at it.When I first started grammarschool and explained to my dadhow hard it was, his advice wasclear: You work harder, he said.You are disabled, but lifedoesnt owe you anything;youve got to go out and grab it,so just work for it.

I have no doubt that, in hispursuit of being a professionalsinger, Frank will indeed workfor it, and will be lifting the roofon many a famous venue for along time to come. It was aprivilege to meet such amotivated and talented Shinemember and I hope well all beable to follow his on-going story.

At 21, Frank is already an award winner,having twice won the accolade of St.Bernards School, Young Musician of theYear in both Year 12 and 13.

Fundraising

ChairmansChallenge

In the last issue of Together, I had completedchallenges seven and eight of the ChairmansChallenge the Great North Run and GreatEastern Run and was well on my way tomeeting my ambitious target of 25,000.

Many of you will have heard that challenge nine,the Sahara Trek, ended in difficult circumstances. The whole team, includingPeterborough Council CEO, Gillian Beasley, andShine Treasurer Aidan Kehoe, had to beevacuated out of the desert following an outbreak of some as yet unidentified virus. Thebrave Shine team did at least manage threedays of trekking through the desert, and togetherraised nearly 6,000 towards the ChairmansChallenge total.

My 10th challenge took me to the 5k Santa Dashat Burghley Park, Stamford, on Sunday 14th

December 2014. An incredible 135 people

joined my team on the day, including runnersfrom local businesses Businesscoms,Rawlinsons, Royal HaskoningDHV,e4education, Premier Kitchens and AtheneCommunications. Altogether, 1,178 took part, allraising funds for many charities.

The Chairmans Challenge fundraising target atthe start of 2014 was 25,000. Having run over120 miles, and with the support of manychallengers along the way, I have nowexceeded this by 10,000! With donationsfollowing the 10th challenge tipping the grandtotal over 35,000, I would like to extend amassive thank you to everyone who made theChairmans Challenge such a resoundingsuccess!

Official judges ruleHowever, there is some shocking news toannounce! Following the annual review of theChairmans Challenge, the official judges haveruled that challenge three, the Sheffield HalfMarathon, does not count as the event wascancelled due to a lack of water for runners. Dueto this, I have decided to sign up to run the VirginActive London Marathon on the 26th April 2015.The Chairmans Challenge lives on!

18 www.shinecharity.org.uk/chairmanschallenge

Well, what a year we had in 2014!

Shines Health HubThe money raised through theChairmans Challenge hashelped to fund a new HealthSuite at Shines Head Office,which has now seen muchprogress over the last few months. The consultation room

is now complete and Shineshealth team conducted theirfirst health consultations piloton the 17th December withvolunteers from the SAMC whoprovided feedback. The teamwill continue to run similar

pilots before launchingconsultations to all Shinemembers, and we hope thatwork will also commence on anindependence training kitchen,wet room, and accessibleentrance door this year.

W: justgiving.com/thechairmanschallenge14

www.shinecharity.org.uk/fundraising 19

100% funded by you!Last year was action-packed with all the eventsthat our fantastic fundraisers took part in toraise money for Shine. It is only through yoursupport that we can continue to providesupport to everyone affected by spina bifidaand hydrocephalus. Shine is 100% funded byvoluntary donations, we can only do our work due to dedicated fundraisers thank you!

Shine fundraisers organised bake sales and pubquizzes, took part in swimathons and skydives,and even dyed their hair yellow all to raisemoney for and awareness of Shine.

Clare West organised a 10-mile sponsored walkaround the Lincolnshire Wolds during the AugustBank Holiday last year, which attracted 10 people.They raised an amazing 1,745 for Shine.

Since 2011, Sarah Renehan has raised over10,000 for charity with Project Brain Drain.Project Brain Drains latest fundraiser was therelease of a compilation album titled MusikMayhem on the 31st over the world who haveagreed to donate their music to raise money andawareness for hydrocephalus (some bands havemembers who have hydrocephalus or a direct connection to the condition). The CD is availableon Project Brain Drains online store with proceedsgoing to Shine, Hydro Angels in America, andHydrocephalus Support Association in Australia.Get yours here W: http://projectbraindrain.org

Staff at the SpringfieldHotel in Darlingtonhave completed anumber of fundraising events/collections forShine. On the 22nd

November 2014 theyheld a Charity Pig Racing night, where theyraised 303 to be split equally between Shine,Breast Cancer Campaign, and the Cystic FibrosisTrust. They will also be running a charity racenight for Shine on the 14th March!

Fundraising

London marathon 2015Weve got a great team of runners who areraising money for Shine again in this yearsLondon Marathon, which will be held on the26th April 2015.

Good luck to all our runners: KerryFitzpatrick, Matthew Gibson, Richard Astle,Stephen Vickers, Jonathan Ramsden,Daniel Jolley, Jessica Pratley, Amber Kirkand Adrien Prigent.

Were already hearing from lots of you who areplanning fundraising events for 2015 thankyou for the support and keep up the good work!If you would like to take part in fundraising forShine, just email us at E: [email protected]

SAMC

20 www.shinecharity.org.uk/SAMC

Hello everyone and welcome to all the latest news from theShine Adult Members Council (SAMC). By Michael Bergin

Spring is nearly upon us; the clocks will soon begoing forward, the bright nights are coming, andits time to start making plans for those summerholidays!

SAMC meetingsThe SAMCs last meeting of 2014 was inNovember at Shine Head Office and was wellattended. Gill Yaz, Shines Health DevelopmentManager; Martine Austin, Shines HealthCampaigns Officer; and David Isom, ShinesDevelopment Manager (National HQ Services &Midlands Region), joined us. We had our firstmeeting of 2015 in January more about that inthe next edition.

DevelopmentsOne of our roles as Shines representative groupof adult members is to communicate issues orsuggestions that members may have about Shineand its services. We often receive suggestions fornew leaflets to provide guidance to our memberson various issues, and it is our job to work withShines Health and Education Developmentteams to get these produced.

Following a suggestion from a member, theSAMC has been working with Kate Steele on aguide to help adults with spina

bifida/hydrocephalus to understand directpayments. SAMC health lead, Patricia Adley, hashad meetings with Gill Yaz regarding a leaflet onpain management, as well as Shines leaflet,Taking Care of Yourself With Spina Bifida. Benefitslead, Helen Robinson, has been working onupdating the Severe Disablement Allowanceleaflet, and there are two useful informationsheets on filling in the forms on the Shine website.We are also hoping to get a link to DisabilityRights on the Shine website in the near future head to page 22-23 for more information onchanges to Disability Living Allowance (DLA).

More news Jason Merrill will be our link from the SAMC to thenew Shine Youth Council and he has been liaisingwith Nic Shaw, Shines Youth Work Coordinator,on updates. I have been to meet some membersin the Hull andsurrounding areas, and Ishall be at the FamilyOpportunity Weekend inMarch. Sadly, SAMCmember Asif Shah hashad to resign from thecouncil for personalreasons, but I ampleased to announcethat Sue Skinner, whomany of the memberswill already know, will bejoining us as his replacement.

Got a question? Is there something you wouldlike to see the SAMC doing on your behalf?Please feel free to make contact at anytime!

Michael BerginCommunications Officer SAMCE: [email protected]

SAMC update

The Shine Youth Council

This is Me 11-18s Club


This is MeI can't believe the difference in the

temperature between Belfast, where I am now

living and studying, compared to

Cambridgeshire, where I moved from. It was

so much warmer down there! Since my move,

things here at Shine have certainly been

cooking over...

Shines Youth councilWe had the very first Shine Youth Council inCoventry during the weekend of the 10th-12th ofOctober 2014. There were six This is Memembers in attendance: Aaron McKane, AmyMacDonald, Rosie Booth, Megan White, RowanFord and Simeon Wakely. The rest of the teamwas made up of Andrea Daye who volunteeredand Elaine Adams, our Shine Support andDevelopment Worker from Coventry.

The weekend was great fun. It was also a time oflearning, getting our heads around what we areembarking on, and beginning to forge someconcrete ideas as to what our roles are on thecouncil. One of the best things for me over theweekend was having Radio Plus come in andinterview us. The guys were really good and to beput on the spot like that with a microphone pushedin front of you is not easy. I was so proud of theguys being able to get that recording ontoFacebook. That weekend holds some greatmemories for me and, Im sure, all those whoattended too!

The mascotDuring the end ofNovember I wasworking outside andheard this tiny littlewhimper. I could notwork out where it wascoming from, until I putmy hammer down andstarted hunting around. Underneath a planterbox was this little tiny grey kitten! I thoughtthis would be a great addition on the farm butalso a fantastic mascot for This is Me. RowanFord was keen for a mascot and here it is! Idecided to call it TIM after This is Me. Illsend you updates on his progress!

Warner Bros Studio Tour London The Making of Harry PotterOctober 25th 2014 was Spina Bifida andHydrocephalus Awareness Day. It was on this daythat we took some lucky This is Me membersover to the Harry Potter Studios in London. I havenever seen young peoplewith eyes and mouthsgaping that wide before! The sets and the propsthat were on display were

absolutely superb. It wasreally exciting to go through and see some ofthe weird and wonderfulcreations from the Harry Potter films. Because ofthe success of the day, we are going to be runningit again this year keep your eyes peeled formore information soon!

It was reallyexciting to gothrough and seesome of the weirdand wonderfulcreations from theHarry Potter films.

By Nic Shaw, Shines Youth Work Coordinator

Benefits

If you are 16 or over andclaiming Disability LivingAllowance (DLA), your benefitwill change to PersonalIndependence Payment (PIP), ifit hasnt already happened.People living in Northern Irelandwill also be reassessed at somestage, but we do not know whenyet. You will have to beassessed for PIP, even if youhave a lifetime or indefiniteaward.

Re-assessment will start first forpeople who live in: Carlisle,Chester, Cumbria, DarlingtonEast Anglia, East Midlands,Harrogate, Huddersfield,Lancaster, Liverpool,Manchester, Wales, WestMidlands, and York.

AND

Your fixed period of DLA ends You report a change in your

care or mobility needs You reach the age of 16.

For most other people, except inthe groups above, you will be re-assessed sometime betweenOctober 2015 and late 2017.

There are some specialcircumstances, which include:

Children getting DLA,reaching 16 and not living inthe areas above can continueclaiming DLA but will be re-assessed at some point wedo not yet know when this will be.

People who are getting DLAand were 65 or older on 8thApril 2013 will not be re-assessed for PIP or be able toclaim it. You can continue toreceive DLA.

However, if you are getting DLAand were under 65 on 8th April2013 but have since reachedthe age of 65, you will be re-assessed for PIP. If you do notget PIP, you may be able toclaim Attendance Allowance.

Completing the PIPapplication formAs well as asking for informationabout your disability/disabilities,the PIP application form asksyou to describe your ability tocarry out daily living and yourmobility. It is important that youhighlight how your spina bifidaand/or hydrocephalus affectshow you do things, how youthink and how you learn. Youshould seek help to fill in theforms if you feel you havedifficulty expressing yourself.

Important: Shine has producedtwo separate information sheetsspecifically to assist adults withspina bifida and/orhydrocephalus to fill in the PIPclaim form. The information isavailable to download from theShine website W: http://bit.ly/ShineBenefitsor you can contact T: 01733555988 orE: [email protected] forcopies.

The AssessmentOnce you have filled in your PIPform, a healthcare professionalwill assess your claim and maycontact a medical professionalwho knows you for furtherinformation. Most people willhave to attend a face-to-faceconsultation. After this, yourcase is sent to the Departmentfor Work and Pensions (DWP),who will make the final decisionregarding your claim.

Like DLA, PIP has twocomponents: the daily livingcomponent, and the mobilitycomponent.

The healthcare professional willassess how you can manage 10daily living activities (likewashing and dressing) and tworegarding mobility. They will giveyou between 0 and 12 points foreach one, depending on howyou can do it. You need to scoreat least 8 points on a particularcomponent to get the standardrate award, and 12 points to getthe higher or enhanced rate.

Changing to PersonalIndependence Payment

These notes are intended to assist you to ll in the application form for PIPs. Please note that if you also have a sight impairment or hearing loss, there are separate notes to assist you on the information sheet for PIPs for people who have hydrocephalus.

Do seek help to ll in the forms, if you feel that you have difculty in expressing your needs. Citizens Advice Bureau or your local Welfare Rights Adviser sometimes employed by Adult Care & Support (Social Services), may be able to assist.

You will need to phone them to ask for an appointment.

You must be able to carry out all of the activities safely, to an acceptable standard, repeatedly and in a reasonable time this is no more than twice the time that a person without a disability would normally take to complete the activity.

If you have any reports from Adult Social Care, Occupational Therapists, General Practitioners and Specialists, and/or a care plan, make a copy and send them in with your completed application form, list any reports sent in on page 3 of the form.

Daily living activities:1) Preparing and cooking food: This is a cooked, one-course meal for one person, using fresh ingredients. Do ensure that you make it clear that when you have mobility problems, resulting in you requiring to use a wheelchair or crutches at all times in the kitchen, that you have difculty in carrying or lifting anything hot at /or above waist height. Explain if you have impaired feeling in your legs and that there is a risk of burning yourself if you spill any hot liquid onto your legs; provide details of how often this happens. List any aids used in the kitchen e.g. perching stool, lever taps, kettle tipper etc. Note down any adaptations made to your kitchen, such as a low-access sink or adapted equipment.

2) Taking nutrition: This includes drinking. Do explain if you have impaired kidney function, and need to be prompted to take on adequate uids to preserve your kidney function.

3) Managing therapy/monitoring a health condition: Include any information regarding any assistance that you require to carry out physiotherapy exercises, how often, and how long this takes. Provide details of epilepsy/seizures in this section. If you are diabetic, explain any equipment you use to monitor your blood sugar levels. If you have a recent history of pressure sores, explain where they are and the assistance that you need to monitor your skin and to provide treatment to the sores.

Personal Independence Payments (PIP) for adults who have spina bidaNote there is a separate sheet for adults who also have hydrocephalus

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22 http://bit.ly/ShineBenefits

Benefits


If you are called in for a face-to-face assessment, and you havehydrocephalus resulting in youhaving difficulty withunderstanding information, orhave problems with expressingyourself, you can make arequest to be assessed by aspecialist assessor known as acognitive and mental healthchampion. BUT you mustarrange this as soon as youreceive your letter asking you toattend an assessment.

Important: Do not turn up forthe assessment without makinga request to be seen by aspecialist assessor. You mustarrange this as soon as youreceive your letter asking you toattend an assessment.

The face-to-faceassessmentThe assessor may come intothe waiting room to meet you.They will ask you how you getabout and how you travelled tothe assessment centre. Domake it clear if you had to be

dropped off at the door of theassessment centre, or theassessor may assume that youare able to walk the distancefrom the car park.

They will ask questions about:

Your daily life Your home How you manage at work if

you have a job About social and leisure

activities that you engage in or have had to give up

They may carry out a briefphysical examination. They willalso assess how well you canconcentrate, answer questionsand express yourself if thesethings are affected.

When you are explaining whatyou can do, be sure to tell themwhat you need help with, andwhy, tell them if you needreminding or encouraging to dothings. Explain any aids andadaptations that you use in yourhome. If it takes you more than

twice the time as someonewithout a disability would take tocomplete an activity, explain whythis is. It may help to takesomeone who knows you well into the consultation. they will notbe able to answer for you, butmay be able to help you toexplain your difficulties.

If your claim is unsuccessfulor reduced, the DWP will writeto you to tell you how manypoints you got and why. Theywill then telephone you shortlyafter, so that they can talkthrough the decision with you.

If you are unhappy with thedecision, you can ask for it to bereconsidered BUT you must dothis within one calendar monthfrom the date of the decision.

For further advice or support,contact agencies such as yourlocal Citizens Advice Bureau, aWelfare Rights Advisor, orShines Support andDevelopment Team T: 01733 555988

It is important thatyou highlight howyour spina bifida and/or hydrocephalusaffects how you dothings, how you think and how youlearn. You shouldseek help to fill in the forms if you feelyou have difficultyexpressing yourself.

If you are 16 or over and claiming DLA, your benet will change to PIP. You will have to be assessed for this, even if you have a lifetime or indenite award of DLA.

When will you be re-assessed?If you live in Carlisle, Chester, Cumbria, Darlington East Anglia, East Midlands, Harrogate, Hudderseld, Lancaster, Liverpool, Manchester, Wales, West Midlands, or York.

AND: Your xed period of DLA ends You report a change in your care or mobility needs You reach the age of 16. You will be re-assessed under the PIP system.

For most other people, except in the groups marked Special Circumstances.

You will be re-assessed sometime between October 2015 and late 2017. People living in Northern Ireland will also be reassessed at some stage, time scales have not yet been decided.

Shine has produced some information sheets, to assist you to ll in the PIP claim form. There are separate sheets for people who have hydrocephalus, and another sheet if you have spina bida. The information will be available to download from the Shine website or you can contact your regional or our national ofce for paper copies.

For those in special circumstances it will be different. Children getting DLA, reaching 16 and not living in the areas above, can continue claiming DLA but will be re-assessed at some point we do not yet know when this will be. If you are getting DLA and were 65 or older on 8th April 2013, you will not be re-assessed for PIP or be able to claim it. You can continue to receive DLA. If you are getting DLA and were under 65 on 8th April 2013, but have since reached the age of 65, you will be re-assessed for PIP. If you do not get PIP, you may be able to claim Attendance Allowance.

The assessmentOnce you have lled in your PIP form, a healthcare professional will assess your claim and may contact a medical professional who knows you for further information. Most people will probably have to attend a face-to-face consultation. After this, your case is sent to the DWP

Changing from the Disability Living Allowance (DLA) to the Personal Independence Payment (PIP)

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assist you.

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You may nd that hydrocephalus affects how y

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For example, you may nd it hard to:

To understand information

Have motivation to start and do things

Remember everyday things

Do things without someone prompting/ rem

inding you

Understand body language

Deal with managing and paying bills or plann

ing future purchases

Difculties with hand/eye coordination and s

patial awareness

Problems with taking in and retaining written

information and also remembering what has

been said to you

You should make this clear on your claim form

, include this information on page 5 of the

forms where you have to provide information

regarding your health condition. Write down

that you have difculties with your cognitive fu

nction.

If you are called in for a face-to-face assess

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Do not turn up for the assessment without m

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Consider taking someone who knows you w

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If you have hearing loss, and require an inter

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Benny Bear

24 www.bennysblog.co.uk Cfacebook.com/ShineBennyBear

As Benny gets ready for a fun-filled 2015, we thought it would be great to featuresome recent highlights taken from Bennys ever popular blog!

Christmas was a really fun time, and this one wasextra special for Benny and his family. If youhavent already heard, Benny has a new friendcalled Bella Bear. Benny wrote this on his blog atChristmas:

It is Bellas FIRST Christmas this year and I amso excited for when she sees all the prettylights twinkling for the first time. Mummy saidthat we can make some paper chains to put uparound Bella's bedroom. I know she will lovelooking at the different colours, as the paperchains twirl around her room.

Benny and Bella had a great Christmas and Bennytook some time to think about some of his bloghighlights from the end of 2014.

In November Benny met a very special little girlcalled Hannah:

Two weeks ago, Hannah Crossinvited me to have lunch with her ather Montessori Nursery. Sheintroduced me to all her friends andwe had great fun at circle time,singing lots of songs and counting

games. The children all had lunch and Hannahmade sure she drank a beaker of water andate some fruit out of her lunchbox as well asher sandwich and her favourite cheesy crisps!

October was Bennys best month with AwarenessWeek, the Shine AGM, the Shine Awards, andWear Yellow and Shine all grabbing his attention:

Evie and Martha Littlewood-Hillsdon, who aretwin sisters, raised a brilliant 215 at theirschool, Lympsham First School in Somerset.They baked cakes and wore yellow. And, eventheir mummy Katy, Nanny, and big sister Annajoined in too.

Since Christmas Benny hasbeen doing his best to stick tohis New Years resolutions.Here are the things Benny istrying to stick to for 2015:

1. Drink more water to keep me hydrated and healthy

2. Have one piece of fruit in my lunchbox every day

3. Put my clothes and/or my school uniformready the night before. (Mummy says thiswill help me get ready much quicker andthey have more time for breakfast!)

4. Tell Mummy, Daddy, or a grown up if I amfeeling sad or worried.

Benny is really looking forward to hearing from you during 2015, keep the emails, letters andFacebook comments coming!

Be brilliant! Benny

Bennys Blogare you keeping up to date with Benny Bears busy life?

We are delighted toshare with you thatShine are working withCodman Neuro DePuySynthes to develop normal pressurehydrocephalus (NPH) information materialsand another print run of the ever-popularBenny Bear story books.

We would like to offer our sincere thanks toCodman Neuro DePuy Synthes for theirsponsorship of the latest batch of Benny Bearbears, your contribution is making hundreds ofchildren very happy indeed!

www.shinecharity.org.uk/membership 25

Gobis gossip

Hello to you all! Here we are well underway in 2015!It doesn't seem that long ago that I was greetingyou all in 2014 how the last year has flown by!

It's fair to say the previous 12months havent be the easiestfor me and 2015 hasnt given methe easiest start either, as I'mlikely to be recovering fromopen-heart surgery to fix aleaking aortic valve when youcome to read this. Not great, butthe only way to look at it is like ahurdle. Lets face it, life is full ofhurdles to overcome somehigher than others. All going well,by the time you read issue 17 ofTogether, I'll be back to Shineduties, back to training, and backto playing competitiveBadminton. Bring it on!

Looking back, its been a hectictime since my ramblings in thelast issue of Together. As always,I had a busy schedule with anumber of activities inside andoutside the world of Shine.

I had a very successful trip toNewcastle where I visited BedeBurn Primary School, and I waskindly invited to speak tostudents in their assembly. The school has raised almost 1000 for Shine a special thanks to

Head Teacher, Mr Arthur, whohas encouraged the fundraisingdue to Grace Mcintosh, who is astudent at the school. Following my trip to the NorthEast, I also headed to Wales fora break with our very own MediaDevelopment Officer, DarrenFower, for company. Fun times!

I also had the pleasure ofattending the unveiling of theStevenage Sports PersonalitiesMural. I'm proud to be featuredon this, along with ManchesterUnited and England footballerAshley Young (who did theofficial unveiling), PGA Golfer IanPoulter, and two-time F1 WorldChampion, Lewis Hamilton!

I also sent out the Shinemembers online survey, whichhad a wonderful response. Iknow surveys aren't everyone'scup of tea, but the feedbackreally does help us massively, sothank you to all to those whocompleted it. I've had thechallenging task of going through them all, but it's given me a great insight into theimportant matters we at Shine

must look into when putting onevents for you.

Once again time and space hasbeaten me for this issue, but lookout for more gossip from me inthe future. You may just hearfrom me sooner than you think!

Gobis gossip

Gobi repping Shine at The Mumbles, asmall coastal town near Swansea in Wales

Gobi with ex footballer LesFerdinand and Benny Bear at AnEvening with Les Ferdinand

Gobi and Ashley Young at theUnveiling of the Stevenage SportsPersonalities Mural

Gobi at Bede Burn Primary school

Contact Gobi E: [email protected]/Shine.Gobi.Ranganathan

Shine40Plus

Talking aboutmy generation

26 www.shinecharity.org.uk/shine40plus

I am 46 and was born with hydrocephalus andepilepsy. I was bullied at school and I ended upin hospital with a nervous breakdown at 13. Iwas keen to make up for missing so muchschool, so I applied to go to university at theage of 36.

It wasnt easy to get in,but eventually,Liverpool HopeUniversity acceptedme onto the Businessand Tourism degreecourse. I had lots ofhealth problems whileI was studying. I had asevere infection in2009 and nearly died,but the support Ireceived wasfantastic! Thelecturers were greatand a Support Workerwent out of her way to provide me with the rightassistance. It turned out I also had dyslexia; thiswas very important to discover. My family werealso a vital part of my support network, as werehealth professionals.

On 22nd July 2014, I received my degree atLiverpool Metropolitan Cathedral. My mum wascrying, she was so proud! I took my family for ameal afterwards it was one of the best days ofmy life. I would say to other people dont beput off by anyone that says, Youll never do it.You can achieve your personal goals with theright help and support.

I got my degreeafter 10 years

I find it really helpful in theShine40Plus Facebookgroup because views andfeelings are shared aboutissues that dont usually gettalked about. Subjectsdiscussed are wide-ranging.Here, we offer a summary ofa discussion on ageing withspina bifida:

1. We go through the ageing processquicker than our peers so we go throughit earlier than they might.

2. Because we were born disabled, peoplethink we can cope better with loss ofindependence. But we all have a startingpoint and adjusting to loss is the same,whether disabled or not.

3. We are more likely to put on a brave frontwithout realising it.

4. We are more aware of our bodies andtherefore feel loss of bodily functionsmore acutely.

5. We are the first generation of people withspina bifida to go through this ageingprocess, so we are learning as we go whilst others are learning from us.

6. Spina bifida is a specialist area, however,that mainstream advice doesn't allow forthis nor with what we are going through.

7. All these things above lead us to feelmore isolated in our loss, so we are morelikely to become depressed.

8. Were not alone. Many of us are goingthrough something similar, being able todo it as a part of Shine40Plus can bevery helpful.

By Alison Mahraj by Paulette Rogers

The lecturers were great and aSupport Worker went out of herway to provide me with the rightassistance.

Shine40Plus

www.shinecharity.org.uk/shine40plus 27

Having largely lived my life withlittle or no contact from a supportgroup, I have for a long timeassumed that everyone hasshared my experience of goingthrough the education systemand finding a job. Only throughcontact with Shine have Iappreciated that, in fact, findingregular, constructive, andmeaningful work is a significantchallenge for many.

Before starting to look for yourideal job, my advice is to decidewhat you can do. This may ormay not be limited by your

disability, academic qualifications or even mobility(for example, can you travel toand from the advertised job?).

Then comes the CV. This is yourchance to sell who you are, yourexperience, and your skills.Remember, employers only rentyour skills because they needthem in their organisation. There

are many books and online guides; some are free andothers ask you to pay for themto rewrite your CV.

Since June 2014, all employeeshave the legal right to requestflexible working hours not justparents or carers. For moreinformation, go to:http://bit.ly/FlexibleOverview

Getting a job and flexible workingBy Mark Simpson

For most of my younger life Iwas quiet; its only in the lastfew years that I have finallyfound my voice and defendedmy corner. I attend variousmeetings and put myexperiences to the localauthority, and its a real boostto hear people thank me formy contributions.

I was brought up by mygrandparents in London.When my grandmotherbecame too frail to manageour home she had to move toa flat that was not accessiblefor me, so I moved int

Documents

Together issue 15