together issue 7

Superstar fundraisers Tinchy Stryder SAMC nominations

Ianmeans

businessShine’s first

Christmasappeal

SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 2

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Welcome toTogether

3

CONTENTSP4 News

P7 Emma Enfield OT

P10 Health with Gill Yaz

p12 Christmas appeal

P16 Fundraising

P19 Silver Dreams Introduction andfamily workshop

P23 Northern Ireland

P25 Events

Submission dates forAutumn edition• Register of interest to submit:

28th September 2012• Final date for submissions:

19th October 2012• Publication date:

2nd November 2012

Together Editor: Tom ScottDeputy Editor: Gail Howard

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

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

Itʼs hard to believe thatwe are heading rapidlytowards anotherChristmas but thecards that we have forsale on page 27confirm that this is true!

Weʼve packed asmuch news,information, features,and events into thisissue as possible, there is so much going on inthe Shine community that the demand for articlesand photos for each edition is growing andgrowing – thank you for all your contributions!

You can catch up with our regular featuresincluding Gobiʼs Gossip, Gill Yazʼs health column,Mike Berginʼs feedback back on all the SAMCactivity, and we welcome Emma Enfieldʼs newspot which focuses on occupational therapy.

Our main feature focuses on Ian Laker and hissuccess in running GBL, a company sellingwheelchairs for over two decades. Ian talks abouthis time at school, his experience as a GBbasketball player, and how establishing abusiness as someone living with spina bifidademands a certain outlook on life.

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

Together Editor

Cover photo: Gobi and Ian from GBL.Photo: Tom Scott

Hello again...


News

4

As you may know Shine Patron,Danny Mills was a contestant inthe 2012 series of CelebrityMasterChef.

Competing against fifteen otherwell-known personalities,including Gareth Gates, MichaelUnderwood, Jamie Theakstonand Cheryl Baker, all keen to becrowned 2012 CelebrityMasterChef Champion, Dannymade it to the final, and was

Carl Kickshis Way tothe Top

Shine Member, CarlHodgetts 34, who hasspina bifida, was awardeda black belt in kickboxingby the governing body, theWorld United Martial ArtsFederation (WUMAF), in2006. To facilitate Carlʼsdisability, the federationrebranded his technique toʻfreestyle martial artsʼ,which involves using hisarms and hands to kickopponents, instead ofusing his feet.

Carl told Shine, “I havebeen a member of whatwas ASBAH, now Shine,for as long as I canremember and I enjoyreading the stories in themagazine because I getextremely inspired by thethings people haveachieved!”

We are inspired by you tooCarl, keep it up! Ed.

On 15th September BennyBear celebrated his birthdaywith a big party at QueensgateShopping Centre inPeterborough. Many localpeople came to meet Bennyand to share his birthday cake.Smiling bear faces were spottedaround Queensgate throughoutthe day, thanks to the successof the Benny Bear face painting.

With a day of party games,face-painting and a bouncycastle, Shine had a veryproductive day raising vitalawareness and a total of£672.82.

Benny’s BigBirthday inQueensgate ...


5

Shine Members, Daniella Jade-Lowe, Reporter for the RoyalBermuda Gazette and NicholasChiddle, Sports JournalismGraduate, share theirexperiences and views of theLondon 2012 ParalympicGames.

Daniella Jade-LoweTravelling in London during the Paralympic Gameswas quite an adventure, and overall it was apositive experience. The public places I visitedwere wheelchair friendly, equipped with ramps andlifts, to make getting around easier for physicallychallenged people.

The Transport for London staff were very efficient.On one occasion when boarding a bus the rampmalfunctioned. The staff immediately reported thisand requested a replacement ramp, which arrivedreally quickly and enabled me to board.

To read more about Daniellaʼs experience pleasevisit shinecharity.org.uk/RoyalGazette

Nicholas ChiddleThe Sport itself was a joy to behold,especially with GB surpassing their medaltotal expectations, and, if the action alonewasnʼt enough to inspire you, then howabout 80,000 people chanting JonniePeacockʼs name?

The best thing about the Paralympics wasthe word disabled being essentially droppedand instead the ability of each athlete wasdiscussed. This may seem like such a basicidea, but there is a huge difference adisabled athlete and an athlete who isdisabled; the latter is what every competitorshould be.

eventually beaten by EmmaKennedyʼs culinary skills.

Congratulations Danny from allat Shine on this greatachievement!

However, Dannyʼsextraordinary year of

achievement didnʼt end there.In October Danny successfullycompleted the first Archie MillsMemorial Challenge, whichinvolved cycling with ScottNielsen from Leeds2Londonand then, the following day,completing an Olympicdistance triathlon.

Danny is on course to raiseover £10,000 for Shine, whichincludes £2000 fromMasterChef and this yearʼsseries winner, EmmaKennedy. THANK YOU toeveryone who made this eventhappen and those whodonated so generously!

Congratulations to Danny Mills!

Above: Daniella with Jessica Lowe,Bermudian Paralympian, whilstsight-seeing in London. Photographby Alex Michael.Left: Nicholas with his Fielderof the Season trophy, forHertfordshire Disabled CountyCricket Club

Shine’sParalympicReports


SAMC nominations

6

Here at Shine we are workinghard to find as many possibleways for people to be involvedwith your organisation. GobiRanganathan, MembershipDevelopment Officer, is out andabout recruiting new membersand raising awareness of whowe are and what we do. To giveyou an idea of Gobi’s work, 78new members joined just lastyear.

Benny Bear now has 528 littlemembers in his club, with somebabies being enrolled while stillin their incubators. There areamazing Shine volunteers upand down the country,fundraising or helping out inclubs and groups. Otherorganisations for spina bifidaand hydrocephalus, whetherlocal, national or international,work alongside us and help toshape what we do.

Disabled adults at the heart ofthe charityEveryone is encouraged to playtheir part and have a say. Onevery significant group in all ofthis is the Shine Adult MembersCouncil (SAMC). This group ofmembers aged 18 and over, areelected by the Membership torepresent them, and to provideaccurate and up-to-dateinformation on what it is like tolive with spina bifida and/orhydrocephalus. The currentmembers of the council havebeen involved in helping toshape the content of Shine ʼsStrategic Plan, the namechange, the Go Folic! launch atthe House of Commons,responses to Governmentconsultations and attending andfeeding back on Shine eventsacross the country. Perhapsmost importantly, the current

group were also responsible forinitiating the Shine HealthSurvey, which has provided somuch information about thehealth issues faced by ourmembers. Two SAMC members,the Chair and Vice-Chair, serveon Shineʼs Board of Trustees,enabling the group to have areal influence at the heart of thecharity.

SAMC meets four times a year,usually at Shineʼs HQ inPeterborough, or occasionally atother venues around the country.In addition members may attendevents, training and localgroups. Some members, ifcomfortable, may be asked tospeak to the media, and allmembers will be asked to sharetheir life experiences with Shine.

Shine pays all travel costs, mealcosts and overnightaccommodation costs, wherenecessary, to volunteers.

Time to find new SAMCmembersMembers serve three years onSAMC and then they standdown to allow a new SAMC tobe elected. We have nowreached that time in the electionyear when we ask fornominations for the new SAMC.We are looking for disabledpeople who really want to beinvolved, who have some time togive, who ideally can travel to afew meetings per year and whofeel they can representthousands of members whoshare their disability.

What to do if you areinterestedThere is a role description forSAMC members whichdescribes what is expected of anSAMC member. If you would liketo view the Role Descriptionplease contact Lynn HartT: 01733 555988 orE: [email protected] weʼll make sure you receivea copy. If you feel that you fit theRole Description then weʼd reallywelcome your interest. If you arenot sure, you can call DavidIsom on 01733 421308 todiscuss it further. Existing SAMCmembers can apply to stand

Getting YOU involved

Shine Member AmarDugal attends a recentevent representing ShineAdult Members Council.

Benny Bearnow has 528

little membersin his club ...


Occupational Therapy

7

again, but must follow the sameprocess as new applicants.

How to applyIf youʼd like to apply for the role,simply fill out the shortquestionnaire attached to theRole Description and send it toSAMC Recruitment,Shine Charity, 42 Park RoadPeterborough PE1 2UQ, ore-mail it to Lynn Hart, addressmentioned previously.

What happens next?Your application will be looked atby Shineʼs Human ResourcesManager and senior colleaguesto make sure that it matches therole description. If you pass thisstage, your name will go forwardfor election to SAMC. Your nameand a few brief details about youwill appear in the February issueof Together (donʼt worry, weʼlltalk to you about this first) andShine adult members will beinvited to vote for you. The 10applicants with the most voteswill become the next SAMC. Ifthere are fewer than 10applicants, the membership willbe asked to support theirelection as a group.

Please think about itIf you think you have somethingto offer, please donʼt hold back.SAMC meetings are fulfilling andfun and it is a real opportunity todevelop yourself whilst helpingShine at the same time. If youhave ideas about what weshould do, things we shouldencourage, or statements weshould make about having spinabifida and/or hydrocephalus thenthis is a real chance to makeyourself heard, represent thegrowing membership, andinfluence the future direction ofShine.

Emma EnfieldShine’s Occupational Therapist

In August I became the Lead Occupational Therapist/Development Worker, on Shineʼs Health Team. I alreadyworked for Shine as a Support and Development Worker and,during my time in this role, it became apparent that a therapyservice was greatly needed, so here I am….

I qualified as an Occupational Therapist (OT) in 1995 and havespent most of that time working as a Community OT in theNHS and Social Services. I am thrilled to have this opportunityto put my OT skills to work for Shine.

Some of you may have already spoken to me - I respond torequests relating to therapy, housing, mobility, equipment etc.So when you contact Shine in the future, you might hear backfrom me.

... I would love to knowabout your experienceswith any therapy services ...I would like to develop the OT service to help Shine membersas much as possible. To date, I have mostly received enquiriesrelating to problems with wheelchair services/provisions, andadaptations/equipment needed for people to live independentlyat home, or to reduce the strain on their carers. So these aretwo areas that I know I need to look into further.

I am going to be writing regularly for Together and I hope thatyou find my columns useful. If you have any ideas for subjectsyou would like to see, please email me and I will aim to coverthese topics.

Going forward, Iʼll keep you updated with all of the excitingdevelopments. To kick start my work, I would love to knowabout your experiences with any therapy services that youhave been involved with, both good and bad! Are there anygaps in the service you have received, that you feel it wouldhelpful for me to know about? What would be useful for youfrom a therapy service at Shine? I am looking forward tohearing from you.

E: [email protected]


Twenty two years ago Ian Laker, with his twocolleagues at the time, started a business sellingwheelchairs. This was a unique venture in that Ianand his two business partners, Jamie and Steve,all have spina bifida.

Ian explains that in the beginning ʻthe phone didnʼtring for three months!ʼ Times were tough, the triohad committed themselves to a 2000 sq/ft starterunit, which was hardly filled by their first twentywheelchairs.

Their fortunes, however, were soon to change –the phone started to ring and hasnʼt stopped now

for over two decades. Over the years the shape ofthe business has changed and today, of thefounding partners, it is only Ian that is still involvedat GBL.

Earlier this month I went along to see the GBLservice first hand as Shineʼs MembershipDevelopment Officer, Gobi Ranganathan, wasbooked in to collect his new chair.

The first thing that strikes you upon arrival is thesize of the business, this is no small time venture.Ianʼs unit houses every type of wheelchair you canthink of, from the smallest childrenʼs wheelchair tolarge electric chairs with hoists and highly technicaldisability specific controls.

More important than this, though, is the warmwelcome that the staff at GBL offer. You senseimmediately that this is a business that genuinelyvalues the customer, and this is a direct result ofIanʼs friendly and accommodating personality.

It hasnʼt only been success in business that haskept the Northampton born entrepreneur busyeither. Until recently Ian had been involved in

Feature

8

Ian means business

Since joining Shine 18months ago I have meta lot of inspirationalcharacters. However,it was on a recentvisit to the wheelchairdistributor, GBL, thatI met someone whohas taken suchinspiration to thenext level.

Words and photos by Tom Scott


Feature

9

wheelchair basketball for 32 consecutiveseasons!

This included representing Great Britain in the sportand coaching some of the nationʼs more recentstars, including Anne Wild.

During the interview with Ian I was intrigued toknow more about how he has become sosuccessful; he has obviously experienced a greatdeal in life and conducts himself as someone whomeans business.

Ian identifies his parents as beinginstrumental to his developmentas increasingly he became anindependent person. Thisattitude to life proved essential asIan progressed beyond thedoctorʼs opinion that he woulddie young.

After a combination of study atboth State school and thedisability specific TreloarsSchool, Ian wanted to pursue hislove for sport at university.However, growing up in the1970ʼs meant that the optionsthat we know today were not yetavailable. Ian was told that in order to complete hisdesired course he would first have to gain a degreeelsewhere due to his perceived inability tocomplete the physical aspects of the course.

By the time he was eighteen Ian was alreadyrepresenting Great Britain as a wheelchairbasketball player and he had his eyes set onimproving his standard of living, starting with hiscar! With this in his sights Ian trained as anAccountant and went on to work for ASBAH untilthe charity moved to Peterborough. It was at thispoint, with no desire to move from his home inHounslow, that Ian and two of his friends set up

GBL. Since then a lot has changed, however Ianalso talks about principles that have remainedconsistent over the years.

The importance of parents to encourage theirchildren to be independent, in spite of their spinabifida and/or hydrocephalus, the necessity ofstriking a balance between independence andgetting together with people who can genuinelyidentify with each other, the fact that if peoplewith disabilities want to work, then they need awork ethic that offers no excuses, and the needfor charities like Shine to collaborate with its

membership effectively, allcome across very clearly inwhat Ian communicates tothose around him.

It was a pleasure to meet withIan, and Gobi left a veryhappy man with his newwheelchair. To read moreabout Gobiʼs experience atGBL see page 14 and 15.

To find out more aboutthe services GBL offerplease see:www.gblwheelchairs.com

s

... if peoplewith

disabilitieswant to work,

then they needa work ethic

that offers noexcuses ...


Health

10

Ensuring that children and adultswith spina bifida receive the verybest care for their bladder andbowel issues has long been animportant part of the ShineHealth Teamʼs work. I amfortunate enough to be in contactwith some of the excellent clinicalservices who believe thatcontinence, as well as kidneyhealth, are the aims of bladderand bowel management foryoung children withspina bifida. Workingclosely with families,they aim for mostchildren to bewearing regularunderwear by thetime they completeinfant school.

On 20th Septemberthe Life LongOpportunityProgramme welcomed Mr PatMalone, Consultant PaediatricUrologist at SouthamptonGeneral Hospital, to talk toparents about modern bladderand bowel management. Foryears, Mr Malone and his teamhave been working to improvebladder and bowel care forchildren with spina bifida,inventing the ACE procedure forbowel washouts.

In his talk, Mr Malone spokeabout the importance of earlyassessment to check that thebladder is able to fill and emptyurine (Urodynamics) in the firstmonths of life. If the bladderfunction is affected, Mr Maloneprescribes medicine to relax thebladder, and intermittentcatheterisation to empty the

bladder. Interestingly,Mr Malone informedus that since hiscentre adopted thisapproach severalyears ago, there isvery little need for

bladder augmentation,a major operation to enlarge thebladder. Likewise, Peristeen hasreduced the need for the ACE.

Some other centres treat allbabies born with spina bifida withmedicine and intermittentcatheterisation, stopping later ifeverything looks to be fine.These centres are also findingthat there is a much lowerrequirement for surgery, as thebladder is much more able to fillproperly. A relaxed bladder is asafe bladder; by keeping thepressures down there is a lowerchance of kidney damagethrough reflux.

As well as medicine, someurologists are using injections ofbotulinum toxin, such as Botox,to relax the bladder muscle and

increase the capacity. It is usedmore and more for adults, withgood effect. It can be used inchildren too, however not allPaediatric Urologists are happyto use it as the child will have togo into hospital every 6 monthsfor repeat injections.

The important message forparents who have children withspina bifida is that there shouldalways be an active plan, notonly to preserve the kidneys butalso to promote continence, andplanning for this should startwithin the first months of life.Hopefully with such models ofexcellent practice in many partsof the country, continence can beachieved by many children,without surgery. It wonʼt work foreveryone, but itʼs definitely worthpursuing. Your children will gainso much confidence throughachieving continence, the soonerthe better!

To contact Gill Yaz pleaseT: 0208 449 0475 orE: [email protected]

Bladder and Bowel Day

Thursday20th

September

By HealthDevelopment

ManagerGill Yaz


11

Shine has formed an exciting newpartnership with the Family PlanningAssociation, which will see Go Folic!promoted in Family Planning Clinicsthroughout the UK. This new partnership willprovide us with a unique opportunity todirectly target large numbers of women of achildbearing age with the Go Folic! messagebefore theyʼre starting to think aboutpregnancy. Go Folic! literature will beavailable to all women attending the 3,000Family Planning Clinics and 2,000 specialistfamily planning GP surgeries in the UK.

We are very fortunate to have been givensuch a great opportunity to promote Go Folic!on a national level and in such a targeted way.As a result many more women will be madeaware of the importance of taking folic acidbefore they plan a pregnancy, so thatwhen the time comes the concept oftaking folic acid wonʼt be a new one.

In addition to promoting thecampaign in their clinics, our friendsat the FPA are also promoting folicacid awareness on their website,and have also ensured that Go Folic!literature (along with some speciallycreated Go Folic! branded folic acidtablets) form an integral part of theirnew fertility kits, which are availableto purchase from their websitefpa.org.uk

Partnerships with otherorganisations have already provedvery successful for Go Folic!Earlier in the year we partnered

with Norfolk and Waveney Primary Care Trustto develop a Go Folic! pharmacy campaign forthe region. During the course of the 2 monthcampaign, pharmacists reported thatdisplaying our information had prompted morewomen to ask questions about healthypregnancy and taking folic acid, with somepharmacies noticing a definite increase in theirover the counter sales of the supplement. This

was exactly the result that we werehoping for. However, most

significantly, we discovered fromthe Chief Pharmacist that

prescriptions for folic acid in thearea rose by a whopping 700

prescriptions during thequarter of the campaign!This has given us atremendous boost, as itjust goes to show that we

are getting things right. Wearenʼt just increasing awareness,weʼre changing behaviour too.

We hope that the trust willbecome the first to adopt GoFolic! on an on-going basisand hope to roll out thecampaign to other PCTs inthe near future.

Thank you all for your continued support. Keep up the great work tweeting and sharing!

Family PlanningGoes Folic!

Go folic


My name is Aidan and my familyhave been members of Shine fora very long time. Iʼve been raisingmoney for them and tellingpeople how brilliant they aresince I was six years old – Iʼm 11now.

Iʼd like to tell you whyI do this, becauseI hope it mightencourage you to sendin a donation thisChristmas, to enableShine to keep helpingfamilies like mine. Theyreally need our support.

When I was five, Dadsuffered lots of severestrokes and developedhydrocephalus. He wasseriously ill and had to gointo intensive care afteran emergency operationto insert a shunt from hisbrain into his abdomen. Dad was a Parish Priestand although he made amiraculous recovery, he neverrecovered enough to stay at workand so he had to retire. Mum hadto give up work too. We ended upmoving house, so I had to leaveall my friends from Cubs and myold school behind. It was horribleand changed our lives forever.

One of Shineʼs Support &Development Workers (SDWs)came and visited us lots, so wecould ask questions and theycould help us all understand whyDad behaves a bit differentlynow. Sometimes Dad gets

stressed and anxious, and itʼsreally helpful that I can tell peopleabout his hydrocephalus – I canonly do this, because our ShineSDW had explained it to me soclearly when it first happened.She gave me and my SisterʻBenny Bearʼ books to learnabout what had happened toDad, so that we werenʼt soscared of it all.

Mum says things like this cost alot to produce, so Iʼm alwayskeen to help raise money forShine whenever I can, so thatthey can keep helping other

families when they go throughhard times.

Once, I sent Shine £10 fromselling my homemademarmalade and coconut ice.

They always send me a nicethank you letter telling me howevery pound is important.

My family doesnʼt need any helpfrom Shine at the moment, butMum says you never know whatthe future holds. By making adonation today, we can makesure that every little boy or girl, orMum or Dad living with spinabifida and hydrocephalus willalways have somewhere to turnto when things get tough. The best way that you canhelp Shine to support otherfamilies like mine is to send adonation.

Christmas appeal

12

Mum said Shine was like a guardian angel, not just for Dad but for all of us.

At the time, everyonethought my Dad wasgoing to die, but hedidn’t – luckily for allof us, he’s still herewith us.

Can you Make a Gift to S


Christmas appeal

13

If you canʼt make a donationtoday, could you do somethingto raise money for Shine

instead? You could bake somecakes and sell them to yourfriends and family, or perhapsyou know someone who wouldlike to run the LondonMarathon for Shine!

The people in the FundraisingTeam are always really friendlyand happy to help – so youcan always give them a call on01733 421351 to talk aboutyour ideas. I hope you all havea lovely Christmas and I

promise to send you a nicethank you letter if you are ableto make a donation today.

Love from

Your donations will help Shine to continue providing the support andadvice which is so desperately needed by other families like mine.For example, as part of its Lifelong Opportunities Programme,Shine organises an annual residential Family OpportunityWeekend. Please consider making a donation this Christmas,so that Shine can keep helping people like my Dad and me.

If you wish to make a regular donation please complete the form below andreturn it to: Monica Evans, Shine, 42 Park Road, Peterborough PE1 2UQ

Postcode:

Name: Address:

To: The Manager Bank/building society

Address:

Postcode:

Please fill in the form and send to:

Signature(s)

Date:

Instruction to your bank or building societyPlease pay Shine Direct Debits from the account detailed in this instruction subject to the safefguards assured by the DirectDebit Guarantee.I understand that this instruction may remain with Shine and, if so, details will be passed electronically to mybank/building society.

Bank and building societies may note accept Direct Debit instruction for some types of account DD |5

I would like to give Shine a gift of £_______________ Monthly/Quarterly/Annually starting ___ / ___ / 20___

Name(s) of account holder(s):

Branch sort code

9 7 3 1 0 6

Service user number

S h i n e A p p e a l 2 0 1 2

Reference

Bank/building society account number

Instruction to your bank or building society to pay Direct Debit

o Shine this Christmas?

Whether you want to giveregularly, or if you’d rathermake a donation right now,all you need to do is fill inthe form that’s with thismagazine and send it allback in the envelopeprovided.


Following a fantastic summer of Olympic andParalympic action, I hope that everyone still hasthe feel good factor that London 2012 brought usall as we head towards the festive period! Okay Iknow itʼs only November, but before we know itChristmas will be here and Auld Lang Syne will beringing out from households across the nation, aswe say farewell to 2012 and we welcome 2013!

Talking of the New Year, it really is scary howquickly time is passing. Even scarier is the number

of activities that have taken place during 2012! Youmight find Christmas has been and gone by thetime you finish reading this, as once again thereʼsplenty to get through!

Since the last issue of Together, Iʼve been involvedin all sorts of exciting things. Following on frombeing an Olympic Torchbearer in Stevenage, Iʼvebeen the Paralympic Flame Ambassador forHertfordshire, taken part in the Welsh 4 NationsPara-Badminton Championships, completed a 5K

Gobiʼs gossip

14


15

Fun Run at the Great Eastern Run with DarrenʻThe Powerʼ Fower, visited more schools, and evenhad time to fit in getting a new wheelchair!

I had the very good fortune of being able to attenda number of Olympic and Paralympic events,meeting some past and present stars, such asDavid Clarke (Captain of the Paralympic GB 5-Aside football team), Louise Hunt (WheelchairTennis), 3 time Olympic medallist Kriss Akabusiand one of the greatest Paralympians of all time,Tanni Grey-Thompson. I also grabbed theopportunity to rub shoulders with a number of othercelebrities including Prime Minister DavidCameron, Mayor of London Boris Johnson, andpop star Tinchy Stryder.

You may remember, before theOlympics started I was making anumber of school visits. Thesevisits are great fun and itʼs lovelyto see the children showing somuch support for Shine.Alexandra Infants School, inKingston-Upon-Thames raisedmoney for Shine a short timeago and since then have beengetting involved in morefundraising. One of our youngermembers, Jack Keleman attendsthe school, and in September hetook part in a Sponsored Bounce,the objective being to bounce asmany times as possible on abouncy castle. Itʼs fair to saythere was a great deal of jumpingaround, with the school raising afabulous total of £150 for Shine.Well done to the school for theirefforts and also to SarahKeleman for plugging Shine atevery opportunity. Donʼt forget if you want toorganise any fundraising events get in touch withHannah or Andrew in the Shine Fundraising team.Who knows, you may even get a cheeky little visitfrom your Membership Development Officer! E. [email protected] [email protected]

September also saw the start of the new Para-Badminton Season and, after one of my bestperformances, I came away with Gold in the Menʼs

and Mixed Doubles, and Silver in the Singles,narrowly losing to my on-court rival and friend,Martin Rooke. It was disappointing to lose outagain, but Iʼll beat him soon enough! A specialthanks to Kate Thomas from Shine Cymru, whocame along to support me at the Welsh Institute ofSport in Cardiff.

Mid-October saw me take part in The GreatEastern Run after my Shine buddy and MediaDevelopment Officer, Darren Fower threw downthe challenge of getting me to take part. Notbeing one to refuse a (reasonable) challenge, Iaccepted and set about entering the 5K Fun Run,with the additional challenge of raising £1000,just to make it interesting! It was a newexperience for me and Iʼm definitely a long way

off doing the London Marathon.justgiving.com/DarrenandGobi

With all of this excitement andactivity, I still found time for someimportant retail therapy when Ivisited GBL Wheelchair Servicesin Feltham, London. Having beenneeding a new every-daywheelchair for some time, I metwith Managing Director of GBL,Ian Laker. Ian, who himself hasspina bifida, assisted me inselecting a new wheelchair. Aftertest driving a number ofwheelchairs at GBLʼs showroom,I selected my new meanmachine – a Top End Crossfire! Ican now say goodbye to theregular and rather painful backtroubles Iʼve been having as aresult of my old chair. It just goesto show how important it is tohave the right wheelchair. For

more information on Ian and GBL see the featurein this edition on Page 8.

And there you have it. The last few months ofactivities condensed into a nutshell, albeit a ratherlarge one! Once again, time and space havebeaten me and I have to wrap up my column foranother edition. After a hectic and enjoyable 2012,I hope that 2013 will be even better.

See you in the New Year!

Gobiʼs gossip

Above: Gobi with the RioDancers, part of theparade goingthrough St Albans Left: Gobi withTinchy Stryder,holding theParalympictorch together.


16

I celebrated my 40th birthday this year bychallenging myself and ten friends and familymembers to the Leicester Half Marathon on14th October. We raised £2000 for Shine!

It's 9 years since we found that our daughter,Ella, had a spinal cord tumour andhydrocephalus. I would never have believedthat 9 years later, Ella would be running around,

keeping up with her twin sister, Lucy and herolder brother, Sam. Shine provided not onlyvital information about hydrocephalus and aplace to turn to with problems, but also madeus aware that we are not alone. The new nameand image at Shine have brought everythingto life!

All the best, Anne Thomas

The weekend of 22nd and23rd of September saw anawesome team of Shinefundraisers galvanized for theworldʼs largest triathlon eventat the Excel Centre and RoyalVictoria Docks, London.

Triathlons are definitely not forthe faint hearted, with thosecompeting taking onparticularly intense swimming,cycling and runningchallenges, over a range of

distances, in the fastest timepossible.

There were a number ofindividual competitors, as wellas teams of three (eachchoosing to do an individualdiscipline) competing to raisemoney for Shine during theweekend.

So far, Team Shine haveraised over £11,000 and thereis still more money coming in!

So thank you to everyone whocompeted, supported, ordonated to the Team.

Virgin Active London Triathlon

Charliestillsmilingafter theevent

Fundraising begins at 40!

Fundraising news


Letters to the editor

17

Bon voyage, Simon!

Simon Tubb was born with spina bifida and isone of our latest fundraisers to have been bittenby the triathlon bug. Four years ago, strugglingwith his weight, Simon decided to sell hisPlayStation, buy a bike ʻand the restʼ he says ʻishistoryʼ.

Now 7 stone lighter, Simon is training for theLondon to Paris Bike Ride in April 2013 to raisemoney for Shine, and he is also competing inthe Slateman Triathlon in May! Having been toldthat it was unlikely that he would even be able torun, Simon has disproved this diagnosis. Goodluck Simon! Follow Simon through his trainingand preparation at: www.sjtubb.blogspot.com

Dear Tom,

In 1997, aged 18, I was diagnosed withcongenital hydrocephalus. Over thenext two years I underwent fiveoperations and three shunt systems,but I was still in pain.

Having late onset hydrocephalus was difficult. I went frombeing a confident and active person, to spending most of mylate teens in and out of hospital. Faced with constant painand being unable to see my friends often, I would sometimesnaturally feel down.

I realised that I had to look to the future, to what I could do ingood health, and keep that goal as motivation for a speedyrecovery. Understanding the need to distract myself frompain, I took up black and white photography and poetrywriting.

That was 15 years ago and, over time, I have learned that Ican do whatever I set my mind to. Having two tubes in myhead (Torkildsen procedure) doesnʼt stop me. I have climbedmountains and, two years ago, I completed an Ironman forthen ASBAH. No matter how bad things become, they willalways improve and having a positive mind set and great,loving support are very powerful tools.

Yours sincerely, Johnny

Dear Editor,

I was born in 1979with congenitalhydrocephalus and hada shunt fitted at GreatOrmond Street Hospital.I would like to fundraisefor Shine, as I findthem very inspiring, andI hope to take part in the2014 London Marathon.

I believe that you mustalways live life to thefullest. If you arethinking about havingan EVT procedure,whatever your age, Irecommend that you gofor it. It changed my lifeand helped me toachieve my dreams. Ican now see my littlegirl grow and thatʼsamazing!

Kind Regards,Jodie Guest


Welcome toTogether

18

Get in TouchFinally thanks to the members who have gotin touch and I hope I have answered all yourquestions. Please keep those emails coming,as it is your SAMC, for you, the members.

Michael Bergin, Communications OfficerSAMC. E: [email protected]

The SAMC met for their third meeting of 2012 onSaturday 18th August at Shine Head Office,welcoming CEO, Jackie Bland, DevelopmentManager, David Isom, and Health DevelopmentOfficer, Robin Barnatt.

DevelopmentsShine has drafted a description and personspecification for the role of memberswishing to be SAMC representatives, andused this to consult with the councilmembers present. It was agreed that anynew representatives must be 18 or over tobe considered.

So, as we are coming up to the next election forthe SAMC, there will be a selection process forthose interested in joining. You can find out moreby reading the piece in this issue on page 6 fromShineʼs CEO, Jackie Bland.

SAMC also discussed plans for an event for adultsto be held in July 2013. This will be an activitypacked day event to be held called ʻRise andShineʼ at Stoke Mandeville, with the option ofstaying overnight. You can get full details on howto attend this event in this issue; we will be lookingat local and accessible hotels in case somemembers would like to stay. We will also belooking into transport options. I will keep everyoneupdated in the next issue.

EventsPaul Manning attended the Family Fun Day inCornwall on Sunday 7 October. According to Paul:ʻIt was a great event. Seeing all the members andtheir siblings enjoying the whole day was a greatsight.ʼ Amar Dugal attended Understanding andManaging Challenging Behaviour (Associated withHydrocephalus) on Thursday 4 October at ShineHead Office. I attended the Shine B&B Day inSouthampton on Thursday 20 September (seebelow). It is nice that we can get to these eventsand meet the members/parents/carers and grandparents involved.

B&B Day SouthamptonI attended this event and I have to say it was oneof the best that l have ever been to. The event was

opened and everyone welcomed by Shine HealthDevelopment Manager, Gill Yaz. Mr PatrickMalone, Consultant Urologist, at SouthamptonGeneral Hospital, gave one of the bestpresentations Iʼve heard and had everyone right inthe palm of his hand with his every word as heexplained everything.

Mr Malone then took time to answer manyquestions from the parents, which he managedwith ease. Janice Bradley from Coloplastintroduced the irrigation systems and againanswered many questions on various issues.Pauline Gibbons, mother of Gabby, gave a greataccount of a parentʼs journey. It was so nice tohear a mother talk the way Pauline did; she tooanswered many questions and could have beenthere all day judging by the number of people keento hear about her experience.

ln addition, Shineʼs Angie Coster, who is nowProject Coordinator for the Silver Dreams Projectwas in attendance. David lsom and Shinevolunteer and Trustee, Lorraine Watson, alsotalked to some of the parents and those who wereattending a Shine event for the first time. They allsaid that by meeting other parents and sharingideas the day was well worth attending.

Thank you to everyone who made the eventpossible.

I would like to thank Lee Fomeraill, GeneralManager at Riverside Volvo of Hull, who providedme with petrol for my visit to Southampton for theB&B Day. As a charity these gestures make such adifference and help to save on costs.

SAMC Meeting August 2012


Events

19

Family WorkshopNorth & West Yorkshire ASBAH's FamilyWorkshop Hydrocephalus/Spina Bifida - What is itall about? took place on Saturday 13th October2012, in Bradford. Families with a child withhydrocephalus and/or spinabifida, up to the age of eleven,were invited to attend. Theworkshop was funded by grantsfrom Jimi Heselden Fund,known locally as Jimbo's Fund,and The Freemasons ofYorkshire West Riding.

Fifteen families attended andparents took part in discussions with Mr RamnathSubramaniam, Consultant Paediatric Urologist,and Mr John Goodden, Consultant Neurosurgeon(both from Leeds Children's Hospital) and JoanneGrenfell, Shine Education Adviser.

‘Mummy that was an ace day out!’

Shine has been chosen to manage anexciting new project involving people withspina bifida and/or hydrocephalus who areaged 50 plus. The Project is one of a numbercreated nationally which are being funded bythe BIG Lottery in conjunction with The DailyMail as part of their Silver DreamsProgramme.

The aim of the project is to reach out to ourmembers in this age group so that they cancreate opportunities to share theirexperiences and make connections with eachother. Previously there has been little attentiongiven to the issues faced by people with spinabifida and hydrocephalus as they get older.

The idea is to gather information about gettingolder and living with the conditions; this couldbe about health-related problems, caringresponsibilities, bereavement, financialconcerns, mobility issues – anything that

could affect this age group. We will alsocreate opportunities for people to sharepractical tips and interests.

Project activities will include a newsletterwritten by members, online discussiongroups, a befriending service, a new type ofvolunteering scheme, and a national eventtowards the end of 2013 to celebrate theachievements and explore the issues facingpeople as they get older with theseconditions.

To register your interest in the project pleasecontact Angie Coster, Project Coordinator.T: 01308 426372 orE: [email protected] Lynn Hart, Project Administrative AssistantT: 01733 421321E: [email protected]

We look forward to hearing from you!

‘It was priceless for meand for my children as

well to participatethat afternoon.’

Shine Begins at 50!


Special educational needs – consultation events a firstfor Shine CymruThe Welsh Governments proposals for reform of the provisionof special educational needs prompted Shine Cymru to linkforces with SNAP Cymru to deliver a series of consultationevents for parents/carers.

As a result, Shine submitted a response to the consultation toensure our members views were well and truly heard beforeany decisions were made.

• For further information or a copy of the response,contact Sian Prince, Educational Lead for Wales, [email protected] or call our first point ofcontact on 01733 555988

Focus on Shine Cymru

20

Shine Cymru’s AmbassadorprogrammeThe WCVA-fundedVolunteer project inWales continues to gofrom strength to strength. Many membersacross Wales are gaining experience andsupport in their volunteering roles asfundraisers and events supporters for ShineCymru.

2013 will see the introduction of an excitingnew opportunity for Shine Cymru members,their families or friends to sign up and train tobecome Ambassadors for Shine Cymru.

If you are interested in finding outmore, then please get in touchwith Sally King-Sheard (VolunteerDevelopment Officer) [email protected] 01745 889457 / 07896 912340.

CookingfeverreachesWalesWeʼve seenDanny Millssuccess inCelebrityMasterChef,RebeccaMorrisʼCookBook withrecipesfrom variouscelebrities, including Ainsley Harriott,Tanni Grey-Thompson, Rick Stein andBeth Tweddle, and now a group ofenthusiastic volunteers in North Walesare busy making aprons and cookery setsto raise money for Shine.

Spotlight on businessSouth Wales member,Veronika Bosbury, runs anon-line sports andleisurewear companyverotti.co.uk

Shine members willreceive a 10% discount onpurchases - just mentionyouʼre a member whenyou place your order.Follow ʻVerottiʼ onfacebook.com/Verotti.co.uk

Shine, 42 Park Road P t

Handmade GiftsFor Sale

All proceeds to ShineThank you for helping us support families affected by spina bifida and hydrocephalus

Aprons (including Rolling Pin and Wooden Spoon) £5.50Small Bags £1.50Bottle Bags £1.20

Please contact Helen Aitken for more information:Mobile: 07725594622Email: [email protected]

Latest Shine Cymrunews round-up


Events for WalesAutumn/Winter 2012

21

Welsh stars ofthe future!Both Harry Thomas fromPembrokeshire and DanMay from South East Waleswere recently chosen toplay for the Wales Under15 basketball team at theNational Junior BasketballChampionships at StokeManderville. Specialcongratulations to Dan,who was team captain.Well done, boys!

Christmas and New Year at Shine CymruShine Cymru are looking forward to the Christmas season and are holding several events thatyou could get involved with. • West Wales are holding their Christmas meal on Thursday 6 December 2012 at 12pm in

Aberystwyth• South Wales are holding their Christmas get-together on Sunday 9 December 2012 at The

Three Horse Shoes Country Inn, Moulton, Vale of Glamorgan, CF62 3AB (approximately 5miles from Culver House Cross, Cardiff) from 4pm.

• North Wales are holding a Childrenʼs New Yearʼs Party on Sunday 13 January 2013 atCraig-y-Don Community Centre in Llandudno from 2-4pm.

If you would like to book your place on any of these events please see the events listing on page27 for the relevant contact details.

Specialcongratulations

to Dan,who

was teamCaptain. Well

done, boys!


Benefits explained

22

Disability Living Allowance for adults is beingreplaced. The government has announced thatfrom next year, there will be no new applications forDisability Living Allowance (DLA) for adults.Furthermore, all existing adult claimants of DLA willbe expected to apply for the new benefit which iscalled Personal Independence Payments (or PIP).

Q: When will this happen?A: For new claims of PIP, people living in the pilot

areas of the North West and the North East ofEngland will be able to apply from April 2013.If you live elsewhere in the UKyou will be able to apply fromJune 2013.

Existing claimants will beexpected to apply for PIPbetween October 2013 andMarch 2014. The benefitsoffice will get in touch with youabout this (in writing and byphone) in due course.

Q: What about payments?A: For existing DLA claimants,

once you claim PIP, your DLAwill continue until the decisionto award PIP is made. If youare entitled to receive PIP,you will be transferred withouta gap. However, it isimportant to note that if youfail to apply for PIP, your DLApayment will stop anyway. This is why it will bevital to apply once you have been given theinvitation to do so. Unfortunately, if the amountyou get is less on PIP than it was on DLA, youwill not get a top-up to make up the difference.

Q: What are the key differences?A: In many ways, there are close similarities

between PIP and DLA. Like DLA, PIP will havetwo components: a ʻDaily livingʼ component(similar to DLA care); and a ʻmobilityʼ

component (similar to DLA mobility). However, unlike DLA, PIP will have only tworates, a standard rate (similar to middle rateDLA) and an enhanced rate (similar to higherrate DLA).

The rate of PIP that you are awarded will bedecided with reference to a list of activities anddescriptors – each with its own score value. Youwill need to score at least 8 points for standardrate or 12 points for enhanced rate. As this newscoring system seems to reflect the middle and

higher rates for DLA, some of theobvious losers will likely be thosecurrently on the lower rates ofcare and mobility.

Significantly, the most prominentchange will be that in mostcases, you will be expected toattend a face-to-faceassessment. At present wehave little detail about how thisassessment will be conducted,but we will keep you updated.

Q: Where can I get moreinformation?A: Other than speaking withyour local advice agency, youcan get some further informationfrom the following trustedsources:

OfficialGo to the home page and use the search functionto locate web pages on DLA and PIP. There areplenty of official links and resources atdirect.gov.uk

ShineGo to the main Shine homepage and look for ʻhowwe helpʼ and ʻwelfare benefitsʼ. You will see adownloadable fact sheet for PIP on the DLAwebpage shinecharity.org.uk

Reform of DisabilityLiving Allowance

Disability Rights UKGo to the home page and

scroll down to the ʻfactsheetsʼ section, and look for

ʻPersonal IndependencePaymentsʼ. These fact

sheets are very detailed andgood if you already know

your way around thebenefits system

disabilityrightsuk.org


Northern Ireland

23

Summer Funin NorthernIreland

Although there wasnʼt much sunthis summer, we certainly hadlots of fun! Our youngermembers had two outings tothe Donkey Sanctuary inTemplepatrick, one in July andone in August. The little oneseach rode on a donkey anddressed up in donkeycostumes. The sensory roomin the Sanctuary was also a

great success.

Our adult Members went on anouting to Belfast Activity Centre.They tried wall climbing andabseiling – definitely not for thefaint hearted. They also triedarchery, but we have no buddingRobin Hoods

We also went to see Footlooseat the Waterfront. A fabulousnight of entertainment andsome of us met the cast!

Northern Ireland contact:[email protected]


AGM

24

What a busy summer I havehad, travelling from place toplace, meeting wonderfulBenny friends and theirfamilies. I watched the Tour DeFrance and the EdinburghTattoo, but my visit to theParalympics was the mostmemorable. I was fortunateenough to accompany Gobi incarrying the Paralympic Torch.

I love to visit schools, where Ican talk to children who havehydrocephalus, just like me.My Benny Bear books havenow been re-printed and arealso available to download forjust £1.00 each. These booksare fantastic in helping allchildren to understandhydrocephalus. I have alsorecorded the stories as audiobooks, so hopefully these will

be available to listen to verysoon.

Whilst I was out enjoyingmyself, hard work washappening all around me. Anursery in Brighton had aTeddy Bears Picnic and one oftheir staff is now training to runthe Brighton Marathon forShine! Hammerwood CricketClubʼs ʻveteranʼ players had acharity match and raised nearly£150.00! Thank you everyone,these fund raising activities areso important. I was involved inmany Wear Yellow and Shine

events for Spina Bifida andHydrocephalus AwarenessWeek, October 22nd–October28th. Donʼt worry if you missedthese events, you can have aWear Yellow and Shine day ora Benny Bear Birthday

anytime! Just call Hannah onT: 01733 421351 to find outmore.

Finally, welcome to SummerFinlay, born on 4th April 2012,the 400th member of the BennyBear Club. My target is 600members by December 2012,can you help? Ask your friends,schools and clubs. There arefurther details about how to joinat bennysblog.co.uk

So, into Autumn we go, withlots of new ideasand enthusiasm.Thank you all foryour support and Ilook forward tocatching up withmore news soon.

Be brilliant! Benny

Shineʼs final AGM under the presentconstitution will be held at Shine HQ, 42 ParkRoad, Peterborough PE1 2UQ on 29thNovember beginning at 10.30am. The meetingwill vote on a new constitution, which will allowall Shine members over the age of 16 to voteat future AGMs on key matters affecting theorganisation, including who should serve onthe Board of Directors. This change will makethe organisation far more democratic and openup further opportunities for members (includingfamily members and professionals) to play arole in Shineʼs development.

Alongside changes to voting rights Shine hasundergone a governance review, which willmean that Board members can only serve amaximum of two consecutive terms. There willbe new opportunities to join Shineʼs Board

from the AGM in 2013. It is never too early tocontact us if you think that you, or someoneyou know, might be interested in serving on theBoard in the future. Shineʼs Finance Director,Margaret Connor, welcomes all informalenquiries.

The AGM will be followed by the presentation ofthe 2012 Shine Awards, which recogniseindividual achievement and outstandingcontribution to the charity.

Only individual members and Shineʼs Directorsare entitled to vote at the AGM, but anyone iswelcome to attend, stay for lunch, and watch theShine Awards being presented. If you plan toattend the AGM please contact Lyn [email protected]: 01733 421356.

AGM will Ring in Changes

Benny’s brilliant busy summer


Shine is continuing to developits Lifelong OpportunitiesProgramme [LLOP], includingevents such as:

• Family OpportunityWeekend

• Bowel and Bladder Day• Teenage Residential Event• Grandparents Day• Hydrocephalus the Hidden

Disability• Family Fun Day• Adult Lifestyle Event• Understanding and

Managing ChallengingBehaviour associated withHydrocephalus.

Here at Shine we are keen to develop further LLOP events sowe are interested to know what type of events members wouldbenefit from in the future, for example event themes could berelated to education, independent living, wheelchair services,etc.

If you have ideas for future national events we would love tohear from you and would also like to hear about possiblesuitable accessible venues local to you.

Events

25

Please contact either Dave IsomE: [email protected]: 01733 555988 or Joan PheasantE: [email protected]: 01332 556767.

Shine’s Lifelong Opportunities

Programme of National Events

‘Welook forwardto hearing

yourideas.’


Events

26


Events

271

If you would like to order some Shine Christmas Cards, please complete the order form below or call 01733 421328

Please return the completed order form together with your payment to: Shine, 42 Park Road, Peterborough PE1 2UQ

O R D E R N O W O R D E R N O W O R D E R N O W O R D E R N O W

Shine Christmas Cards

Each pack of 10 cards and

envelopes comes with a traditional Christmas

greeting inside.

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If you would like to der some or Shine

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der form below the oror call 01733 421328

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Kings

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treesContemporary Kings

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otal (£)Qty Price per pack T£3.40

£2.30 £2.80 £2.80

08.2 £ £3.40

£3.40Postage per pack £1.00

Signature: .....................................................................................

Name: ...........................................................................................

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£1.50 £2.00 £2.50 £5.00 FREE Over 10 packs

Name: ...........................................................................................

Address: .......................................................................................

........................................................ Postcode: ............................

el: ...................TTe

Email: ...........................................................................................Please return the completed order form together with your payment to: Shine, 42 Park Road, Peterborough PE1 2UQ

Name: ...........................................................................................

Address: .......................................................................................

........................................................ Postcode: ............................

el: ..........................................................Date:.............................

Email: ........................................................................................... Shine, 42 Park Road, Peterborough PE1 2UQ

Name: ...........................................................................................

Address: .......................................................................................

........................................................ Postcode: ............................

el: ..........................................................Date:.............................

Email: ........................................................................................... Shine, 42 Park Road, Peterborough PE1 2UQ

Great news! We have somany great events happeningthroughout the Shinecommunity that we donʼthave enough space towrite about them allin Together.

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

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

shinecharity.org.uk/events

Events Events Events


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together issue 7

News & Politics