Issue 18 – Summer 08 Scottish Spina Bifida Association £2.10

Wheelchair skills p14Get fit & raise cash! p12On song in Inverclyde p5

The Family ConferenceWeekend 2008 – a reviewpage 8

2 talk:BACK

|welcome|

talk:BACK is the official magazine of The Scottish Spina BifidaAssociation. Our aim is to increase public awareness andunderstanding of individuals with Spina Bifida/Hydrocephalusand allied conditions. It aims to support all those affected toidentify their needs and to empower them to make informedchoices and decisions.

Scottish Spina Bifida AssociationThe Dan Young Building6 Craighalbert Way • Cumbernauld G68 0LSTel: 01236 794 500 • Lo Call: 0845 9 11 11 12Website: www.ssba.org.uk

Family Support Service

Anne KaneAnne MetcalfeDiane Lowrie

Tel: 01236 794516email: familysupport@ssba.org.uk

Services and Development Manager

Mark LeesTel: 01236 794515

email: mark@ssba.org.uk

Andrew H D Wynd: Chief ExecutiveJulie Snaddon: Head of Administration Lorraine Wilson Bookkeeper/AdministratorCaroline Kenny: ReceptionistCheryl Bradshaw: Receptionist

email: mail@ssba.org.uk

Fundraising

Deborah Roe: Head of FundraisingClare Cogan Turner: Fundraising OfficerSandra Bauld: Fundraising Administrator

Tel: 01236 794508email: fundraising@ssba.org.uk

Scottish Charity Number SC 013328. A company limited by guarantee. Registered in Scotland, number 213050.talk:BACK is produced on behalf of SSBA by 55 North Ltd: 0141 22 22 100 / info@55north.com

The Editor • Scottish Spina Bifida Association

Summer time bringsout the best...Welcome to the summer 2008 edition of talk:BACK, the magazine for people inScotland with Spina Bifida and / or Hydrocephalus.

Hello, and welcome to the summer editionof the magazine – and unlike the sameissue last year, it looks like we might evenmanage to have a proper summer thisyear, complete with the odd day ofsunshine!

We hope that we have once more puttogether a strong issue of the magazinethat contains a wide range of information,news, view and advice, but all with one

thing in common: providing as muchsupport and help to our readers and usersas we can.

I’m confident that you will find a host ofuseful information in this issue, not least thelatest news on the Blue Badge Scheme,changes in the Incapacity Benefit schemeand an extremely useful article onpregnancy with spina bifida and / orhydrocephalus. There is so much useful

information available, and the greatnews is that, if handled in the right

way, pregnancy needn’t be anymore daunting than it is foranyone else.

We also take a look back atour Family Conference in

February and hear some first-hand experiences from familieswho were there.

We also catch up with Claire Forde andHarry Stratton who both made someremarkable achievements recently, Claireby doing exceptionally well in the BBCRadio 3 Choir of the Year Competition andHarry by appearing as a mascot during theScotland v France rugby match!

Elsewhere you can read the obituary ofElsie Wilson MBE, a remarkable lady whoplayed an instrumental role in the formationof SSBA as an organisation and who sadlypassed away recently, but will beremembered for a long, long time by thosewho were lucky enough to know her.

And for those keen to make a directcontribution to support the Association,check out our Fundraising pages whereyou will find some fun ways of helping raisemuch-needed funds.

Happy reading...

Elsie Wilson was aremarkable lady whoplayed a key role in theformation of SSBA and

will be remembered fora long, long time bythose who knew her. ”“

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|contents|

Summer 08

News . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4All the latest news and views.

On song in Inverclyde. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 512 year old hydrocephalus sufferer on course for victory in choir competition.

Having a ball at Murrayfield . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Young Harry Stratton takes to the field as a mascot for a Scotland match.

Obituary – Elsie Wilson MBE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7A look back at the life of a woman who helped set SSBA up.

SSBA Family Conference. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8All the news from SSBA s recent Family Conference in Edinburgh.

Pregnancy in focus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Coping with pregnancy with spina bifida and hydrocephalus.

Fundraising fun . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12A few ideas on how you can raise money while having fun!

Handle with care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Children with disabilities are being excluded from everyday activities.con

ten

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Incapacity Benefitchanges unveiledMany carers look after someonewho receives Incapacity Benefit.Indeed some carers are disabledthemselves and receive IncapacityBenefit in their own right. Thegovernment has announcedchanges to Incapacity Benefit andIncome Support (for those whoreceive it because of incapacity forwork) through the Welfare ReformAct 2007. The existing benefits willbe simplified and replaced by theEmployment Support Allowance(ESA) for all new claimants. Inaddition, a new personal capabilityassessment (PCA) will class peopleas having ‘limited capability forwork’ rather than ‘incapacity forwork’.

The ESA will have two elements –the first one is a ‘contributory’element based on NationalInsurance contributions and theother is a ‘non-contributory’ means-

tested element. There will be a 13week assessment period duringwhich time all new claimants willreceive a basic benefit equivalent toJobseekers’ Allowance. They willeither have a PCA during thisperiod or enter the ‘support group’for those with a health conditionwhich makes it unreasonable forthem to attend interviews or workrelated activity. Those who pass thePCA will be classed as having‘limited capability for work’ and theywill receive a ‘work-relatedcomponent’ of ESA on top of theirbasic allowance. They will still haveto take part in certain work-basedinterviews and activities.

Existing Claimants will initiallyhave their benefit levels protected.However, details of moving existingclaimants from Incapacity Benefit toEmployment Support Allowance arenot formulated.

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|news|

New parking rules atBraehead ShoppingCentre

Braehead has launched a schemeto fine drivers who park inspaces reserved for disabledpeople. The shopping centrebrought in the new rules onMonday, March 31, which meansanyone parking in one of the 387clearly-marked disabled spaceswithout a valid disabled badgewill be fined £60.

Update: lone parents ofdisabled children andsigning on

You may have seen recentpublicity about lone parentsbeing made to sign on at the JobCentre once their youngest childis 12. This is due to come in fromOctober 2008. There is nowclarification on this issue and ifyou’re a lone parent with adisabled child on middle or highrate DLA component, you will beexempt from the proposals andwill not have to sign on.

Folic acid fortificationdelay by Ministers

Government Ministers havedelayed a decision on whether tofortify UK flour with the vitaminfolic acid, following thepublication of a researchprogramme in America thatseemed to suggest that bowelcancer rates have risen theresince flour fortification wasimplemented.

As a result, further expertconsideration has beendemanded before theGovernment gives formalapproval for mandatoryfortification to go ahead in theUK.

Many experts however believethat, far from causing cancer, folicacid has an overall preventativeeffect – as suggested by a studycarried out last year by theScientific Advisory Committee onNutrition.

BACKchat

Blue Badge consultation – have your sayProposals to increase the reach ofthe disabled parking scheme tomore people who need it and makeit easier to take action against thosewho steal, forge or fraudulently usea Blue Badge were put out forconsultation by Transport MinisterRosie Winterton.

The consultation containsproposals to ensure parking close toessential amenities and servicescontinues to be available to thosewho need it most. Proposals include:lExtending the reach of the

scheme, for example, ensuringmore parents of severely disabledchildren are eligible for a badge;

lGiving parking attendants thepower to confiscate on the spotBlue Badges that have beenstolen, forged or are beingfraudulently used;

l Improving the security of thebadge design to stop forgeries;

lCreating a system of national datasharing, to identify Blue Badgecheats.

The consultation also asks ifindividual local authorities shouldbe given the opportunity to run thescheme in a way that responds tolocal circumstances.

Mobilise Director of Policy andCampaigns, Helen Smith, says: “TheBlue Badge scheme desperatelyneeds updating and I welcomethese proposals. It is now so abusedthat I sometimes feel like morepeople have a Blue Badge thandon’t. We need to make it a schemethat really benefits the lives ofdisabled people. However, I do havereservations about the proposal toallow local authorities to run thescheme in a way that responds tolocal circumstances as it couldcause a lot of confusion”.

Copies of this consultation can be found atwww.dft.gov.uk/consultations or you can contactTasha Duggan on 0207 944 4780 or by email at:bluebadgeconsultations@dft.gsi.gov.uk

Information

|news|

talk:BACK 5

Inverclyde Schools Training Choirhas successfully qualified for thesemi-finals of BBC Radio 3’s Choirof the Year competition in Liverpool,with the anticipation of going all theway to the finals, to be held inDecember 2008 at the Royal FestivalHall, London.

The children singing in the choirare drawn from primary schoolsfrom across the Inverclyde area withthe ultimate aspiration to join theInverclyde Schools Junior Choir.

Claire Forde, who is 12 years old,has sung with the Training Choir forthe past two years and has beenmaking huge progress..

In the two years since Clairejoined the Training Choir she haseven performed twice at the RoyalConcert Hall, Glasgow, as guests ofthe celebrated Phoenix Choir.

Not only that, she shared a stagewith the likes of stars such asSydney Devine and Eve Graham ofthe famous New Seekers.

She also sang with the TrainingChoir in January 2008 as theytriumphed for the second year insuccession in their category at thewell respected Inverclyde MusicFestival.

Under the auspices of theirconductor, Gemma McLean, andaccompanist, Mark MacDonald, theTraining Choir are carrying on arich tradition of choral signing in theInverclyde area – and one of whichthe region can be rightfully proud.

In addition to entertainingaudiences at such fantastic venuesas the Royal Concert Hall and theQueens Hall, Inverclyde TrainingChoir have performed a number ofcharity concerts – including “Musicfor Malawi” and the “ArdgowanHospice Concert” in 2007 – as wellas clocking up performances onnumerous occasions at GreenockTown Hall.

They are now a permanent featureat the hugely popular Christmas

12 year old hyrdocephalus sufferer Claire Forde from Greenock sings soprano inInverclyde School Training Choir, and has just qualified for a UK-wide event.

Claire Forde is on song with theInverclyde Schools Training Choir

Concerts series , held at St Mary’sChurch, and also at the SummerConcerts at the Mid Kirk inGreenock.

The Training Choir’s biggest fan iswithout doubt the current Provost ofInverclyde, Michael McCormick,who never misses a performanceand cannot praise them highlyenough.

It should be pointed out thatClaire’s achievements are all themore remarkable as she hasprimary hydrocephalus and has aventricular peritoneal shunt in situ,having undergone the operationwhen she was just a baby of 18months old.

Amongst the typical problemsClaire faced was her extreme fearof such noises as clapping, laughter,whistling and TV sound effects.

Claireperforming atthe Music forMalawi concertin Greenockand at therecentcompetition.

These noises left Claire cryinghysterically and many nursery andschool concerts, sports days, churchservices and school assemblies hadunfortunately to be abandoned dueto noises that were obnoxious toher.

The school bell presentedparticular problems and her teachertook the extraordinary step ofremoving the clock on the wall tostop Claire counting down, withterrified anticipation, when the bellwas due to sound.

Claire has now conquered herfears over certain noises and beamsbroadly as she is photographedsoaking up the applause afteranother couple of successfulperformances.

We would like to wish Claire allthe very best with her singing infuture and wish her and the rest ofthe Inverclyde Schools TrainingChoir all the very best of luck in thenext stages of the Choir of the Yearcompetition.

We hope she lets us know howshe gets on.

“The Training Choir’s biggestfan is undoubtedly the currentProvost of Inverclyde, MichaelMcCormick, who never misses aperformance.”

6 talk:BACK

In October last year Anne Kane, oneof the SSBA Family SupportWorkers, discovered thatCumbernauld Rugby Club hadbeen awarded a mascot place at theforthcoming Scotland v Francerugby international at Murrayfield --a huge honour for any rugby club toreceive. Even better, Anne learnedthat Cumbernauld Rugby Club weregiving the place to the SSBA andthat everyone immediately thoughtof Harry Stratton as he is rugby daft.

Harry and his family eagerlyaccepted this once in a lifetimeopportunity and over the comingmonths the enormity of his roleslowly began to dawn on him andhis family. As his mum said: “Ourwee boy was to lead the mascotsout onto the pitch at Murrayfield infront of over 60,000 people!”

She tells the story......When wearrived, Lynsey who was our pointof contact at Murrayfield, took us upto the hospitality area where we metup with the other mascots. We allthen had a lovely lunch and then allthe mascots got changed into theirScotland kits to have a rehearsal forthe event.

After the rehearsal we waited untilit was time to do it for real. We werestarting to get a little nervous forHarry as the enormity of his up andcoming task started to sink in as thestadium steadily filled up. Before weknew it the Frattellis started to playand the flames either side of the

tunnel started to shoot up towardsthe sky and as the mascots startedto run out onto the pitch Harry tookhis place on the pitch. Close behindthe mascots was the Scotland squadand everyone took their places tomeet The Princess Royal, PrincessAnne. Then the French nationalanthem was played and whenFlower of Scotland was played weall became rather emotional. A lot offamily bought tickets to the matchso that they could also be a part ofHarry’s big day as did his HeadTeacher and Deputy Head Teacherfrom his primary school. After theanthems the mascots left the pitchand took up their places to watch

the match.After the match the mascots went

back up to the hospitality areawhere they were all given soup toheat them up before they went backdown to the tunnel to meet theplayers.

Once in the tunnel the mascots alllined up ready to meet the playersas they made their way out of thetunnel. Harry met virtually all of theScotland players and they all kindlysigned his autograph book and hisshirt.

When Harry met Jim Hamilton hegave Harry his match shorts andsocks as a momento, which wasvery kind of him. One of the French

officials alsogave him anofficial Frenchhat and one ofthe Frenchplayers – DimitriSzarzewski –came out andgave Harry hismatch shortsand socks as asouvenir also.

It really was amarvellous dayand the memorywill stay with usall for a very,very long timeindeed. Thanksto all concernedfor their efforts.

|news|

Harry takes the field at Murrayfield!

Rugby madHarry has thetime of his lifeat Murrayfield!

Little did her parents, Alexander andElizabeth Allan, know that theirdaughter Elsie would make such amark on the world at the time of herbirth in 1924. Having achievedmany prizes in her time at the GirlsHigh School in Glasgow Elsie hadan ambition to become a doctor.With the outbreak WWII thisambition was thwarted and Elsiefound herself at 18 years in chargeof a camp reception station forItalian prisoners. One of heramusing stories was of GuiseppeDelia, an Italian prisoner whose soleinterest and drive was to return toItaly so that his perpetual coldwould clear. It was during the warthrough her attachment to theRAMC that she met andsubsequently married Alan Wilson.This long loving partnership lastedfor over half a century.

After the war the Wilsons movedto London for some years before thecall of Scotland was too strong toresist. While in London their first twochildren were born and soon aftertheir return to Wishaw, Lanarkshirecame their second daughter, Alison.Elsie was closely involved incommunity projects and inparticular assisting with the settingup of Children’s Hearings aftercontributing to the Kilbranon Report.

Some say life begins at forty butfor Elsie, thirteen years after Alison’sbirth, a completely new challengearrived as she was prgnant withtwins.

The Wilsons were told that therewas no problem with Donald but Jonmight need a bit of special care.This was the start of what inretrospect was a great achievementby Elsie as not only did shesuccessfully raise her family but alsowas the instigator of what becamethe Scottish Spina Bifida Association(SSBA). Elsie investigated what wasthe anomaly of spina bifida, ormyelomenigocele as it wasbecoming known. By 12 monthslater she had discussed in detail thesituation with her consultant JohnBentley who gave her support toestablish a parent’s group inLanarkshire. Subsequently, with

colleagues in Glasgow, theydeveloped this parent’s movementand it became the aboveAssociation in 1966. An early andeffective parent’s group whofocussed on the requirements of thepatients who had the disorder and apotent stimulus to the NationalHealth Service in which provisionfor the children was not alwaysadequately developed. Clearly astime went by the requirements werenot only associated with the medicalconditions but also with educationaland social aspects. SSBA hascontinued to develop its services toindividuals and families.

Many positive developments havebeen achieved and these have beendone by patient persistence ratherthan aggressive confrontation.Because of the nervous systembeing the controlling system of thebody challenges arose in so manydifferent aspects of life. It could befrom the associated hydrocephalusfor which a successful surgicalprocedure had been developed inthat decade, from the mobilityaspects where muscle power andsensation were impaired to varyingdegrees, or urinary problems withthe deficient nerve supply causingproblems such as continence, orlearning problems and employmentdifficulties which had to beovercome.

An example of Elsie’s persuasivepowers is that she persuaded P & Oto take a group of children off on aneducational cruise on SS Uganda.She realised what a stimulus thatcould be and got agreement that ifeach child could find £50 thecompany would meet the rest of thecost. As a result many benefitedfrom trips to the Baltic

For 20 years she continued heractive involvement and then shesaid she was taking a back seat butshe continued to be a strongsupport to the Association as shehad so much experience and was

blessed with a great deal ofcommon sense. When the HonoraryPresident was asked what wasrequired as Elsie was retiring theanswer was “an Elsie Wilson in eachof our branches which now cover allof Scotland”.

Her many years of unpaid servicehelping others less fortunate thanherself earned her the M.B.E. in1987. While sometimes there maybe doubts of the justice in Honoursthis to Elsie could not be questionedas if anyone did deserve recognitionshe did for all her selfless work forothers.

Another interesting publicappearance was Elsie and Jonappearing on the queen’sChristmas broadcast with PrincePhilip in the surroundings as Jon hadone of the early deliveries of amotability car.

Having recently passed his testmother insisted that they took thecar by train to London where he hadhis first experience of driving in thebig city!

As Jon said at Elsie’s funeral heknew that the Association and all thefamilies say a great big thank youfor her tireless and determinedcontribution which has resulted inthe prospering Scottish Spina BifidaAssociation. It is there as a supportand to assist families in whatcontinues to be a very challengingworld.

Elsie had that satisfaction as sheretired to Comrie in her latter dayswhere the family spent so manyhappy times. There she enjoyedfurther community work as well asenjoying her other interests whichincluded golf, arts, books and travelespecially if it was to shoot off to seea Picasso exhibition

Having given up golf she still hadto go to the Comrie Golf Club on aSaturday for her soup and apple piewith custard. Her four grandchildren, two great grandchildrenand her own family have greatmemories to live with but no longerhave as Jon said- “My helping hand,my guiding light, but most of allquite simply the very best friend Iwill ever have”.

Mrs Elsie Wilson M.B.E.

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|obituary|

“My helping hand, my guidinglight, but most of all quite simplythe very best friend I will everhave.”

8 talk:BACK

|Family Conference|

Our third Family Conference washeld in the impressive HiltonEdinburgh Airport Hotel inFebruary and was once again agreat success, proving as it did tobe extremely informative and usefulfor everyone who attended.

A total of 36 families took the timeand made the effort to attend andhad the opportunity to listen to anumber of top quality presentationsfrom a range of professionals whoare specialists in their field. Theywere drawn from fields as diverse ashealth, social work, law and sports.

Full crèche facilities wereprovided by North EdinburghChildcare which allowed parents toattend the talks while the childrenenjoyed a wide range of activities,ensuring absolutely everyone had a

terrific, rewarding time!Our grateful thanks as always go

to all our speakers, some of whomstayed with us with their familiesover the weekend which let parentsdiscuss various problems in a moreinformal setting. Thanks too mustalso go to all the hotel staff whohelped at the Conference and HelenStoker and her team at EdinburghChildcare.

SSBA’s third Family Conference took placerecently and TALKback was there to see allthe action as it happened.

Thank You

The Conference would not have been possiblewithout funding from many organisations and oursincere thanks go to:• BBC Children In Need• Coloplast• Jimmy Johnstone Trust• The ARCHIE Fund, Aberdeen• Children In Need Fund• The Sick Kids Friends Foundation• Yorkhill Children’s Foundation• Cumberland Building Society• SSBA

Thanks for thegreat work –

everything wasbrilliant. ”“

Family WeekendConference8th to 10th February

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|Family Conference|

This is our firstConference –please

book our place forthe next one. ”“

We were able tospeak to the FamilySupport Team at

any time and theywere always therefor us. ”“

Very impressedwith the crèchestaff and

the facilities forthe kids. ”“

Great Conference.We learned a lotfrom the speakers

and from otherfamilies. ”“

10 talk:BACK

|health|

The chances of women with spinabifida and hydrocephalus havingstraightforward pregnancies anddeliveries have never been better.

This is partly due to increasedknowledge and expertise amongstobstetricians and midwives, but alsodue to healthier, better informedand better prepared potentialmothers.

Ideally, all women should see theirGP for preconceptual advice: if youhave spina bifida or hydrocephalus,this is essential.

Be prepared: remember FolicAcid!If you or your partner have spinabifida or a family history of spinabifida, you have an increased risk ofhaving a baby with spina bifida. Bytaking folic acid for at least a monthbefore you start trying for a baby(and continuing until the end of the12th week of pregnancy), you canhelp reduce this risk by about 70%.

For you, the folic acid tabletsavailable at chemists orsupermarkets are not enough.Youneed 5 mgs a day and this is onlyavailable on prescription from yourdoctor.

Then, before you get pregnantyou should arrange to see theseexperts:lurologist: your kidney function

will be checked to ensure thatyour kidneys are fit for the extrawork they will have to do duringpregnancy; your urine will bechecked for infection.

lcontinence adviser: self-catheterisation may be difficultlate on in pregnancy and youneed to plan how you willmanage.You may be prone to

constipation and may need tochange your bowel medication ormanagement. If you have a stoma,this can be affected as yourabdomen gets larger – it maychange shape, your ostomyproducts may not stick well andmay leak.

lphysiotherapist: your balancewill alter as you get bigger andyou may need to use a wheelchairmore often. The physio will adviseon exercises to help preventswelling of your legs and feet,advise on skin care andprevention of pressure sores andhelp if the growing baby causesyou some breathlessness.

lneurosurgeon: having a shunt isno contraindication to pregnancy.It will not harm the baby’s growth;a pregnancy will not harm theshunt. (For more informationcontact Nancy Bradley on hydrowoman@aol.com. She hasconducted a long term study onthe relationship betweenpregnancy and shunts.) If youhaven’t seen your neurosurgeonfor years, now is the time to catchup with him.

ldietician: she will help you tokeep your weight at a sensiblelevel

lGP: you may be the first patientwith spina bifida orhydrocephalus that your GP hascared for in pregnancy. Give yourGP and the Practice Midwife timeto brush up their knowledge.

When you are pregnantGet to know your midwife really welland educate her about yourdisability and how it affects you (sheshould read ‘Pregnancy and

Disability’, published 2007 by theRoyal College of Nursingwww.rcn.org.uk Tel: 0845 772 6100).

Decide where it will be best foryou to have antenatal care – athome, at hospital, at the GP’ssurgery?

Ask about suitable antenatalclasses.

Arrange a visit to the localmaternity unit – look at accessibility.Are they prepared for disabledmums? Are examination couchesand beds height adjustable? Willthere be a cot that you can manage?What equipment will you need totake into hospital with you?

Discuss antenatal testing andscanning and decide what you arecomfortable with.

Does she know of an obstetricianwho has delivered babies of womenwith spina bifida?

Write a birth planInvolve your partner and midwife inthis. Include:lnatural birth or caesarian section?

(C-section is rarely necessary fornon-obstetric reasons).

lpain relief (the anaethetist willdiscuss the possibilities of havingan epidural).

lpositions for labourlwill you be able to get into (and

out of) a birthing pool?lwill your partner be able to stay

overnight if you rely on him toassist with your care?

l If you want to breastfeed, willthere be help andencouragement?

After the birthNew parents find the first few weeksdifficult and you will be no different!

Spina bifida,hydrocephalus andpregnancy Pregnancy is always a delicate time,

but this can be even more complicatedfor mothers with spina bifida.

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|health|

A new booklet, Pregnancy andDisability, has been published bythe Royal College of Nursing toimprove the level of care availableto disabled women who arepregnant.

Midwives and nurses havewelcomed the 32-page publicationwhich will help them to provide highquality, client-led care for disabled

women during pregnancy, birth andbeyond.

The author, Jackie Rotheram,herself a disabled mother, writeswith the authority of longexperience gained in pioneeringand running the first specialistmidwifery service for disabledwomen at a large women’s hospital.

With her collaborators she gives a

thorough description of how otherscan deliver the kind of service thatmeets the needs of disabled womenby seeing the woman first and herimpairment second.

The complex issues of what itmeans to be disabled, with relevantstatistics, are discussed in full.

The legal background to disabilitydiscrimination is well covered,highlighting the new DisabilityEquality Duty – all public sectororganisations including the NHS arenow positively required to promoteequality for disabled people.

Case studies of the four broadcategories of disability – physical,sensory, learning and long-termmental illness – illustrate vividly theissues for health care workers.

These will assist midwives andnurses to consider and plan inadvance with disabled clients howtheir particular needs can beaccommodated, working with otheragencies and professionals whereappropriate.

Rosaleen Mansfield, Chair ofTrustees, Disability, Pregnancy andParenthood International (DPPI)said: “I warmly commend this newguide. A large proportion of theenquiries DPPI receives come fromdisabled women consideringparenthood, or already pregnant.

“They want to be as activelyprepared as anyone else. They alsoneed extra information, possibly tohelp them source support andequipment. This new guide is aninvaluable new resource.”

Accept all help you are offered byyour family and friends but don’t letthem take over.

See your continence adviser toget your bladder and bowelregimes re-established.

Try to rest when the baby sleeps.Rely on your Health Visitor if you

have worries or questions aboutyour baby. Don’t feel you’re being anuisance – she’s there to help you.

Most women with spina bifidaand/or hydrocephalus have normalpregnancies, uncomplicateddeliveries and lovely babies.

With a little forethought and care,you could be one of them!

New information guide for midwives

Raising awareness of the role of folic acid

In collaboration with other colleagues within the UK and Europe, SSBA has been instrumentalin raising awareness of the benefits of folic acid supplementation to reduce the incidence ofneural tube defects of which spina bifida is the most severe.

In recent years there has been a strong lobby to consider mandatory fortification of flourwith folic acid, a proposal heartily endorsed and supported by the organisation.

The addition of this vitamin in the food chain is a safe and effective way to improve ournational health and reduce the number of babies born with this complex and lifelongdisability.

At long last, in 2007 the Food Standards Agency agreed to recommend to Ministers in allfour countries in the UK that flour should be fortified with folic acid. There is, however, muchwork to be done to ensure that this recommendation is transformed into a reality. TheAssociation will continue to raise awareness of the need for such implementation as soon aspracticable.

Further information can be obtained from our website at www.ssba.org.uk.

Case Study – Pregnancy and Disability

The booklet features a case study of Mary, who has spina bifida and is a long term wheelchairuser. Genetic counselling and urine testing were arranged in her antenatal assessmentbecause of fears of infection related to catheterisation, which Mary performed for herself.Other issues included breathing as her uterus enlarged, her ability to care for herself, tissueviability, pregnancy changes, antenatal care provision, type of delivery, and pain relief.

Six months later and now pregnant, Mary visited the antenatal clinic where a needsassessment was performed. Antenatal screening tests were all accepted. Referrals were madeat Mary’s request to professionals including a dietician, physiotherapist, health visitor andurodynamics specialist, because of repeated infections.

Mary expected no difficulty with her wheelchair and early pregnancy proceeded normallybut Mary experienced some difficulties later on when bending forward became difficult. Herincreased weight and reduced mobility also increased pressure on her lower back, so she wasadmitted at 28 weeks for rest and help with tissue viability. She had no pressure sores but herbuttocks were becoming increasingly red and tender. A special mattress was provided andphysiotherapists provided advice on exercises and taking regular periods of lying flat.

In preparation for the birth, appointments were made with the obstetrician to discuss themode of delivery and a tour of the delivery suite and postnatal ward was arranged. At 34weeks’ gestation Mary’s large uterus was compromising her breathing so it was decided toperform a caesarean section. Mary remained awake for the delivery and her partner stayedwith her throughout the procedure and afterwards.

Mary was seen by the physiotherapist and a manual handling assessment was performed,identifying no risk issues. Her partner took responsibility for bathing the baby as bendingwas difficult for Mary. She concentrated her efforts on breastfeeding and a five-day hospitalstay helped her to establish this and gain more confidence. The occupational therapistperformed a home assessment and found that Mary and her partner had planned well.

The community midwife visited daily at first, gradually decreasing her visits until transferon day 21 to the health visitor who Mary already knew.

Forthcoming events and activities

14th August – Charity Golf Day Team of 4 £400. Venue: WesterwoodGolf Course. The Scottish Spina Bifida Associationare holding their first CorporateCharity Golf Day on Thursday 14thAugust 2008. The Westerwood Golf

Course in Cumbernauld will be thevenue for the challenge whichpromises to be a fantasticnetworking and social event.

The Westerwood has amagnificent 18 hole, par 72 golfcourse which is a feast for the

senses.You will be surrounded bysparkling scenery, meanderingthrough a paradise of silver birches,firs and heathers with many holesoverlooking the Kilsyth andCampsie hills.

Teams of 4 will compete on a Best2 Score Stableford basis with fullhandicap allowance and the eventitself will comprise of: goody bags,a light lunch, golf, hole in onechallenge (with the opportunity towin a car), raffle and a 3 coursedinner to finish the day.

Cost for a Team of 4: £400If you would like to take part in

the SSBA Charity Golf Day or look atour sponsorship opportunitiesplease contact Clare on 01236794508 or email Clare@ssba.org.uk

10th-14th September – Londonto Paris Cycle RideYou’ll enjoy cycling throughbeautiful English villages and thestunning countryside of rural Franceinto Paris, one of the most magicalplaces on earth.

This trip is a fantastic challengefor anyone wanting to do somethingamazing for a great cause! Therewill be lots of like minded people onthe trip all looking for the challengeof a lifetime and of course meet newfriends. Some people come withfrinds or family but most peoplecome on their own – so what areyou waiting for? Sign up today for afantastic experience and the

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Join in the funand get fit atthe same time!

Fundraising focus

opportunity to make life longfriends.

For more information on thischallenge please call 01236 794500or email fundraising@ssba.org.uk

Other overseas challenges areavailable please visitwww.ssba.org.uk/overseas

14th September – Cumbernauld10kVenue: Broadwood Stadium,CumbernauldRun it for Ramsay. Run this, the 2ndCumbernauld 10k in aid of theGordon Ramsay Appeal.

The Association has been chosen,for the second year, as thenominated charity for theCumbernauld 10K and we areasking those who enjoy keeping fitto ‘Run it for Ramsay’. GordonRamsay, Honorary Patron of SSBA,launched the F Word Appeal in 2006when he asked everyone toparticipate in, or hold an event, toraise funds for the Scottish SpinaBifida Association.

The 10k run was set up last year,by North Lanarksire Council, tocelebrate Cumbernauld’s 50thanniversary and was such a successthat they expect double the numberof runners this year. This will be afantastic way to keep fit and raisefunds for Gordon’s favourite Charity.

To Run it for Ramsay contactDeborah or Clare on 01236 794508.

Big Fun Runs – 5k’sGlasgow – Saturday October 4th2008 • Edinburgh – SundayOctober 5th 2008 Run, jog or walk – it’s up to youThe Big 5K Fun RunsAll of the runs will be 5 Kilometersin length and will be open to Men,Women and Children of all ages.Children under 13 can enter butmust WALK the course and beaccompanied by a paying adult.Youcan enter as an individual or as partof a family or team .

Individuals will only be able totake part if they agree to raisemoney for a chosen charity. The BigFun Run suggested minimumfundraising target is £50 per person.

All Big Fun Runners will receive a‘Big Fun Run’ Medal and a GoodieBag. Both routes are suitable forwheelchair users. Some sections ofthe courses will be on grass or have

a steep elevation so the wheelchairmay need to be pushed throughthese sections.

Glasgow Big Fun Run –Bellahouston Park – SaturdayOctober 4th 2008 Bellahouston Park is a huge park(175 Acres) and has many featuresand facilities to tempt visitors andlocal residents to its grounds. Itboasts The Walled Garden with itsfine collection of ferns and daffodils.The House for the Art lover also hasa less formal garden consisting ofmixed shrubs and herbaceousborders. Other facilities are a 18Hole Pitch and Putt Course, CyclingActivity Centre, Two Bowling Greensand much, much more.

Edinburgh Big Fun Run –Holyrood Park – Sunday October5th 2008 Holyrood Park is a unique historiclandscape in the heart of the city,whose dramatic geology is worldrenowned. The Park boasts a wealthof history and archaeology.

The 5km course will take youround the Holyrood Park and the350 million year old Arthur’s Seat.The route gives fantastic views ofEdinburgh and surrounding areas.

To take part please contactFundraising on 01236 794508 oremail fundraising@ssba.org.uk

30th October 2008 – GordonRamsay’s Gala Dinner£500pp Venue: Stirling CastleThe most luxurious event of the yearis back, hosted by Gordon RamsayOBE. The red carpet will be rolledout and the Association will onceagain welcome guests from theworld of television, radio and sportto this feast of entertainment. Ticketreservations being taken.

Diving with Sharks, WhitewaterRafting & Skydiving can beundertaken at anytime of year to suityou, so call 01236 794508 and bookyour challenge today. GREAT FORTEAMS OR INDIVIDUALS!

How to take part –contact

FundraisingTo take part in any of these activitiesemail fundraising@ssba.org.uk orcall 01236 794500 and they will beable to give you further informationor send you application andsponsorship forms.

Don’t have time to collect –Justgiving.comIf you don’t have the time to getpeople to sponsor you and collectsponsorship money later, we haveteamed up with justgiving.com, awebsite which allows our runners &event participants to raise moneyquickly and easily online with theirown personalised web pages.

Friends and family will be able todonate online with a credit or debitcard – so no more running aroundwith paper sponsorship forms, orchasing cheques and cash afteryour event.

To set up your page today, pleasevisit: www.justgiving.com/ssba/raisemoney

Everyclick.comThe search engine with a heart,Everyclick.com donates half of itsrevenue to charities.

So forget Google – makewww.everyclick.com yourhomepage. By choosing ScottishSpina Bifida Association as yourchosen charity, the Association willreceive a donation from Everyclickevery time you do a search foranything!

There is no catch, you don’t payanything – it’s just an easy way foryou to support us. Donating hasnever been this easy. The morepeople that join the better, sospread the word!

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Space is limited and priority willbe given to older people, andindividuals either registereddisabled or on benefits.

When you first call you will beasked a few questions so that youcan be registered for the service. Allinformation will be treated in thestrictest confidence.

You can book transport up to oneweek in advance.You can also bookmore than one journey in a week.

How does the service work?After you have booked your placeyou will receive a telephone callconfirming the time you are to bepicked up.

You will be picked up as near aspossible to your front door.

The bus will leave MonklandsHospital after visiting hours are overand you will be dropped off athome.

Who operates the service?NHS Lanarkshire has provided

funding for Community TransportGlasgow, in partnership withStrathclyde Passenger Transport, torun the pilot scheme in Monklands.

Community Transport Glasgowhas been running a similar schemein Glasgow for the past year.

NHS commitmentNHS Lanarkshire is committed toensuring that:

lAll vehicles will be fullyaccessible and maintained to thehighest possible standards.

l You arrive at your destination ontime.

lAll staff will be courteous andtreat you with respect.

If you have any comments orcomplaints please contact us at:

Community TransportGlasgow,PO Box 8906,Coatbride,ML5 5WU.

Monklands EveningVisitor ServiceWhat is the scheme?NHS Lanarkshire is look at ways toimprove transport links to ourhospital.

As part of this a free eveningvisitor bus service to help people tohospital to visit their friends andfamily will be piloted.

The initial trial will take place inthe Monklands area and if this issuccessful it is hoped to introducethe service in other areas inLanarkshire.

The door-to-door service aims tohelp older people, people with adisability or those on a low incomeget to hospital for visiting times.

How do I get a place on the bus?All you have to do is call 0845 1284027 book your place between2pm-4pm Monday to Thursday and2pm-3.30pm on Fridays.

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Free visitor transport for thepeople of Monklands.

Following the success of lastyear’s event we are running awheelchair skills course forchildren under 16 years ofage.

It will be held in theCraighalbert Church Hall (nextto our Centre) on the 14thand 15th of October.

Parents, brothers and sistersare also welcome to comealong and join in.

There are a limited numberof spaces for this course and ifyou are interested inattending please phone theFamily Support Workers on01236 794 516.

Wheelchair skills course

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Fear of legal action, confusion overrules and a failure to includechildren and parents in decisionmaking are all excluding childrenwith disabilities from everydayactivities, says new researchpublished recently.

The report, entitled Handle WithCare, was produced by Scotland’sCommissioner for Children andYoung People and also discoveredthat these same problems arecausing children with disabilitiesstress and loss of dignity.

Handle With Care examinedpolicy and practice in the movingand handling of children withphysical disabilities and was basedon a survey of all 32 LocalAuthorities. It involved interviewsand focus groups with children andyoung people, parents andpractitioners as well as a review ofrelevant law.

It concludes that there are vastdifferences across Scotland inmoving and handling practice, stafftraining and the extent to which

children and parents are involved indecisions about their care.

Essentially, children with physicaldisabilities can be victims of a‘postcode lottery’ which has seriousimplications for their quality of life.

The report also highlights thedilemma staff face in choosingbetween following a policy – whichmay mean moving a child in a waythat causes the child pain or distress– or disciplinary action by moving achild in the way he or she prefers.

Staff are also concerned about alack of resources and the fact thatmoving and handling is often givena low priority by service providers.

They are also often unclear aboutpolicies and rules and mayconcentrate solely on limiting allrisks due to a fear of litigation. Someparents and carers feel that healthand safety of staff is prioritised atthe expense of the rights and needsof children.

The children themselves often feelthat they are treated like any other‘load’ and are sometimes handled

without beingconsulted on whatmethod they preferand what iscomfortable.They can evenend up being

excluded fromactivities such asschool trips and

visits to facilities such as swimmingpools.

Ultimately, their quality of life cansuffer as a result.

Kathleen Marshall, Scotland’sCommissioner for Children andYoung People, commented: Themoving and handling of childrenwith disabilities has a real impact ontheir happiness, comfort and safety,but staff are understandablyconfused over what they can andcannot do and have to constantlyjuggle conflicting priorities.

“National standards aredesperately needed so that, thoughthe detail of policy may vary fromcouncil to council, there are clearguidelines that ensure the say andwell-being of staff and children. Thequality of life of children withdisabilities should not be apostcode lottery.

“Currently there are excellentexamples of Local Authorities doingmuch good work but too much bychance rather than design.”

National standards aredesperately needed sothat, though the detail of

policy may vary from council tocouncil, there are clear guidelinesthat ensure the say andwell-being of staff andchildren. ”“

Handle with

care...

Essentially, children withphysical disabilities canbe victims of a ‘postcode

lottery’ which has seriousimplications for theirquality of life. ”“

Children with disabilities are “voiceless”in decisions says Commissioner

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Name ______________________________________________________________________________________

Address: __________________________________________________________________________________

__________________________________________________________________________________________

Please return to FREEPOST Plus, RRAE-SCGY-CSJA, SSBA, 6 Craighalbert Way, Glasgow G68 0LS.(No stamp required. Please return completed form by 15th August.)

We are planning to offer a one day exhibition on the 4th September 2008 at the ScottishSpina Bifida Association Family Centre – The Dan Young Building.

The exhibition will centre on improving ‘Quality of Life’. We know that only a minority ofpeople with continence problems use appropriate products to manage their condition.Fewer still investigate treatment options or seek professional help.

The exhibition will address ways in which good management can promote lifestyles (e.g.travel, social engagements and interpersonal relationships), while promoting the manyproducts that can be used to manage or treat the condition.

• Up-to-date Information on the latest Bowel and Bladder Management• Wide range of Continence Management Product / Demonstrations

• One to one personal consultations with Specialist Continence Advisors

To book a place please phone 01236 794516, or return the attached tear-off slip.

4th September 2008Continence Awareness

Exhibition