HQ June 2012

HQTHE MAGAZINE OF THE HAEMOPHILIA SOCIETY • SUMMER 2012

News - Support - Information - Campaigning

Martin’s Storyp15

Freephone: 0800 018 6068 www.haemophilia.org.uk

Tom’s Story p30-31

FREE KIDS’MAGAZINEINSIDE

Your stories

Olympic News p9-11Buddy Awardsp6-7

BookReviewp16

p26-27BENEFITSUPDATE

Chair’s ReportThe Haemophilia Society exists toserve its members. Chris’s reportbelow shows the breadth of ouractivities in support of this aim.My role as Chair is to ensure abalance of longer-term goalsand day-to-day priorities. Overthe last few months, staff andvolunteers have worked hard toprogress key areas of ouractivities.

Perhaps the most visibleachievement is an improvedwebsite. Dan Farthing hasstandardised navigation andinstituted regular updates. Thenext stage will be to check andimprove individual pages withongoing regular review.

Other achievements are asimportant but less immediatelyvisible.

Our Clinical Advisory Committeehas been reinvigorated underthe leadership of Mike Makris. Apatient group needsindependent clinical advice,and we are hugely grateful to allour Advisors for this.

Within the Haemophilia Alliance,we meet each May andNovember with the Departmentof Health to review issuesaffecting those with bleedingdisorders. For May, we putconsiderable effort intoprofessionalising ourengagement in this meeting tomaximise our ability to achievepositive results.

The All Party ParliamentaryGroup (APPG) on Haemophiliahas been recreated. The Boardupdated its policy document forthe APPG, includingdocumenting a draft policy onthe Contaminated BloodTragedy. We debated this withcampaign groups, and as I writewe are about to publish it forcomments by members.

Separately, as Chris reports, weare progressing our bid for the2018 WFH Congress.

A major work in progress isimproving engagement andcommunication with members.Sadly, as Chris reports, DavidHenderson who as a volunteerwas doing great work indeveloping local groups, diedsuddenly in April. He was awonderful role model, both in hisdrive to achieve and in hiscompassion, and we will misshim. Continuing his work withlocal groups is a priority for theSociety.

There is still much to do toachieve the goals I laid out inDecember’s HQ – not leastimproving fundraising – butsome building blocks are now inplace. I thank Trustees, staff,and volunteers for all they do,and I look forward to reportingfurther significant progress thisDecember.

2

Bernard MansonHaemophilia Society Chair

Chief Executive’s Report

3

I’m sorry that I must begin with thevery sad news that DavidHenderson, a most valuedmember of the team here atPetersham House, passed awaysuddenly in April. David will beknown to many of you through hiswork with the Society and thewider bleeding disordercommunity. In recent years hehad supported the Society in anumber of voluntary roles mostlynotably in our benefits supportservice and by developing ourlocal groups. In both areas ofwork he had made a real impactand we were so grateful for all hewas doing as were the people hewas supporting. David’s passing isa very sad loss to the HaemophiliaSociety and to all his friends here.Our thoughts are with Sheila, theboys and all his family and friends.

In this issue you will find reports ona number of areas of work thatwe’ve been engaged in over thepast six months. This includes avery successful activity event foryoung people which took placein Weymouth in March. All thekids had a great time and anumber of new youth leaderstook part. Our thanks to them andall the staff team at the event.We also gave out the first BuddyAwards in February at London Zoo.Dick and Dom were once againthere to help us promote theevent and give out prizes. It ishoped that the Buddy Award willsoon be going Global and it willbe launched at the forthcoming

World Haemophilia Federation(WFH ) Congress in July.

We’ve been developing our workfor older people with bleedingdisorders and there have beensome events around the countryin the last few months. We hopethat one of the outcomes of theseevents will be some newGuidelines to help healthprofessionals when they arelooking after older people. Wewill also be running furtherinformation and support eventslater this year for older peopleand their families which we hopewill become a regular part of ouractivities.

We hope that some of you willhave taken advantage of theWFH Congress being so close inParis this July and will beattending this major event. Youwill see on Page 22 that theSociety has made it to the final ofthe bid process to host theCongress in Glasgow in 2018. Forthis we are extremely grateful tothe Bid Team including, NancyBrodie, Dr Andrew Brewer, SusanWarren, Liz Rizzuto, Matt Gregoryplus the team at the ScottishExhibition and Conference Centreand SeeGlasgow. We hope thatwe’ll be reporting our success inthe next issue as winning wouldbe hugely exciting; it wouldprovide a focus for volunteer andSociety activity and wouldstrengthen us in discussions withgovernment. Chris James

Haemophilia Society CEO

Events & Notices

4

We mourn the passing of our friend David

All the staff and Trustees at theSociety were deeply shockedwhen we heard just before Easterthat David Henderson hadpassed away.I first met David in my early daysat the Society when attendinghearings of the Archer Inquiryand meetings of thecontaminated blood campaign.He was a committedcampaigner and spoke veryquietly and sensibly, often givinggreat insight into how thecampaign might develop.

He was also a keen advocate ofthe Society’s work in supportingpeople with bleeding disorders.He regularly attended theInhibitor Group events -speaking of his own experiencesand sharing very practicalinformation to those affected ofall ages.

In recent years he became ahighly valued member of theSociety team working in anumber of voluntary capacities.

He worked extensively with NigelPegram in giving benefits supportand information and morerecently he was workingextremely effectively indeveloping new local groupsand building our support forexisting groups. He wasparticularly keen to help establishsupport groups for parents withyoung families as he recognisedthey had very specific needs. Hehad successfully set up a groupin South London and was incontact with families around thecountry making significantprogress in setting up a numberof new groups.

David was an outstandingsupporter of the Society's workand the bleeding disordercommunity. He was also a lovelyman to know and touched thelives of everyone who met him.We shall miss him greatly and wesend our deepest condolencesto Sheila and his family.

Chris James – Chief Executive

News in Brief

5

All Party Parliamentary Groupon Haemophilia (APPG)Our APPG has been reformed.MPs and Peers are once againformally working togetheracross party lines on thecontaminated blood andblood product issue. We willput on the website which MPsare members and how to askyours to join.

New Clinical Advisory GroupMatt Gregory is the Chair ofour new Clinical AdvisoryPanel. A wide range ofhealthcare professionals arecoming together to provide uswith the latest information.

Caxton FoundationPeople with Hepatitis C as aresult of treatment with bloodor blood products can nowmake applications for financialgrants to the CaxtonFoundation. Seewww.caxtonfoundation.org.ukfor more information.

Penrose InquiryThe Penrose Inquiry has nowfinished taking evidence inpublic. Lord Penrose is nowwriting his report which is notexpected to be publishedbefore the spring of 2013.

Contaminated Blood BillYet again the Governmentmade no time for a debate inthe House of Commons so theBill has been reintroduced inthe House of Lords. There is nodate yet for the secondreading.

Contaminated BloodCampaignThis new independent grouphas formed with the primaryaim of removing the SkiptonFund's two-stage system. Theirsite is www.cbcuk.org.uk.

Tom does 20Tom Bradley has been theMembership andAdministration Officer at theSociety for 20 years! He is byfar our longest servingmember of staff and a hugeasset to us.

New Head of FundraisingWe have appointed a newHead of Fundraising. NinaBenscher will start work at theSociety on 23rd July.

Annual General MeetingWe intend to hold the AGM on17 November, probably inOxford or Birmingham, and arelooking to extend it to a fullafternoon of events. Fulldetails will be on the website.

6

Buddy Awards

Youngsters and families fromall over the UK – includingsome travelling over 600 milesfrom the Shetlands - gatheredtogether on 13 February for theBuddy Awards at London’sRegent Park Zoo to say thankyou to their best buddies.People like Zoë (12) whothanked her best friend Tasha(also 12) for being a true friendand for the constant supportshe gives her in coping withher bleeding disorder. Tashawon an award in the friendcategory.

Zoë said: “Sometimes I can’tdo things or I can’t workbecause ofproblems inmy joints.”

But Tasha is always there tohelp and the pair have beenfriends since infant school. “Iknow a lot about what Zoëneeds and I have always beenthere for her,” she said. “If Icome to spend time with her Ican help entertain her if she isnot well.” Zoë agreed: “She isa really good mate.”

The awards were developedby the Haemophilia Society,with financial andorganisational support fromNovo Nordisk, in order torecognise the vital supportprovided by the families,friends and carers of children

who have tocope with

the

Dick and Dom in da ZooA true Buddy - with an award to prove it!

Buddy Awards

7

everyday challenges thatbleeding disorders can involve.As well as the “friends”category there were awardsfor brothers and sisters, mumsand dads, teachers, andnurses. The awards are alsodesigned to raise publicawareness of bleedingdisorders.

Dick and Dom,popular stars ofchildren’s TV,compèred the eventand presented theawards – havingpreviously hosted thelaunch event at theHouse of Commonslast summer.

It was a very happy day for allwho took part and theyoungsters had a great time. Iknow it can feel quite lonelywhen you are coping on yourown with a bleeding disorder.The awards help connectpeople and raise awareness.

Congratulations to all theaward winners, and our thanksto everyone who took part,including Viggo Birch of NovoNordisk.

Chris JamesHaemophilia Society CEO

Haemtrack

8

Keep your treatment records online

If you receive hometreatment/home deliveryregularly then you will haveagreed to complete and returnaccurate home treatment recordsin order that your haemophiliacan be assessed and monitored.

Instead of having to remember tocomplete this information onpaper and then bring it into theHaemophilia Centre, why not logon instead towww.haemtrack.nhs.uk.

Haemtrack:

� Is a secure web based datamanagement service connectingyou to your Haemophilia Centre

� Allows you to record alltreatments

� Allows your Centre to see yourup to date information to helpimprove your care

If you have access to a computer,why not take a look at thissystem? It’s quick, secure andvery user friendly! It takes no timeto keep your records up to date! Ifyou are interested, complete thesimple registration steps, which willregister your interest with yourCentre and once accepted, youcan begin to enter your dataimmediately. Your data is thensent directly to your HaemophiliaCentre where it can be viewedby authorised personnel only.

It is important that we have yourinformation on how you treat

yourself in order that we canmaintain the best possibletreatment for you. Thesetreatment returns allow us toproject how much treatmentmight be used on a regular basis,and ensure that the funds for thisare available. This is of particularimportance at a time of costsaving exercises within all areas ofthe NHS.

Also, it ensures that

� Continuous bleeding problemscan be identified and thereforeany additional treatment givenquickly by staff.

� Recurrent problems can bediscussed with staff at Clinic visits.

� Target joints can be identifiedand discussed with your doctor.

� Information is immediatelyavailable for your doctor whenyou require the completion offorms for benefits or legalpurposes.

If you have any questionsregarding Haemtrack, pleasecontact your Haemophilia Centreand discuss these with yourHaemophilia Data Manager orNurse Specialist.

By Nancy Brodie, Chairperson, UK Haemophilia Data Managers Forum Group.First published in the Haemophilia Scotland Newsletter.

Nancy Brodie

The Society strongly supportsyour using Haemtrack, as in thelong run good data will improvetreatment for all.

Olympics & Paralympics

9

Jack has Haemophilia and isa Paralympic Swimmer!Paralympic swimmer JackBridge wants to inspire youngHaemophilia sufferers to let thesky be the limit to their sportingambitions. Jack, 18, will berepresenting his country in the100 metre breast stroke and200 metres at the Paralympicsthis summer.But at one time you wouldnever have thought it waspossible, says Jack, whostarted swimming when hewas four. “I was so poorly as ababy – if I can do it, anybodycan.”

Jack was diagnosed aged 9months after he rolled over atoy and it caused a massivebruise on his chest. As a childhe had a severe bleed in thejoint in his left arm, which

restricted hisrange ofmovement, andthen he hadsimilar bleeds inhis left knee andright ankle. Healso hadinhibitors – “not anice time in mylife” and a kneedesensitisationoperation whenhe was five or six.

Jack lovedswimming, and itis an excellentsport for peoplewith Haemophiliabecause itstrengthens thejoints and is non weightbearing, but he loved footballand cricket too. He played forhis primary school footballteam and represented thearea near where he lives,South Ribble in Lancashire, atcricket. “I always made sure Iwas covered by medicationand I played because I lovedit.”

He has a similar philosophynow: manage your conditionresponsibly, then go for it. “Iget to the point wheresometimes I forget I haveHaemophilia.”

“There should be no barriers towhat anyone can reach. Put inthe hard work, and you will beable to get an amazing result.”

And Jack is looking forward tothe Paralympics. “If I get to thefinal, it will be a fantasticfeeling, with 17,000 people inthe aquatic centre cheeringme on.”

Sue RoyalHaemophilia Society Trustee

10

Olympics & ParalympicsAlex is all geared up for the Olympics

Olympic cycling hopeful AlexDowsett will be going for goldthis summer and theHaemophilia community willbe cheering extra loud. The 23year old has never let hisbleeding disorder restrict him,but he always treats it withrespect.Alex knew he was competitivefrom an early age, butcontact sports were never hisforte.

“Luckily I was useless at footballand rugby. I could not reallyplay. I would have been upsetat not being able to take partif I had been any good.”

Alex was diagnosed withHaemophilia aged 18 months.

“I think my mum knew therewas something wrong,” hesaid. “When I went to nurserythey were always calling socialservices because I was sobruised.” His parents fought toget him tested, the doctors

Olympics & Paralympics

11

said he was too young. Thenfate intervened.

“I fell over and split my lip. I justdidn’t stop bleeding. Theyfound me asleep in a pool ofblood the next day. Thedoctors said ‘he’s either gotleukaemia or Haemophilia’.”

They found it was the latter.

Alex’s father, a racing driver,introduced him to a host ofsports, including sailing – “I wasthe only one out of 60 kids witha bright yellow helmet on, Istuck out like a sorethumb” andswimming.

“My dad was havinga bit of a mid-lifecrisis and he and hisfriends started goingmountain biking ona Thursday evening.I asked if I could joinin.”

Shortly afterwardsAlex tried a friend’sroad bike and hewas on his way. Hemade the schoolsnationalchampionship teamat 14 – the otherswere two years older.

“I don’t worry about myHaemophilia – if I did it wouldhold me back. But I am stricton medication, I always havea meditag, and my team reallylooks after me.”

For the next generation ofOlympic hopefuls, schoolsshould be more flexible andencouraging. “There are lots ofsports that Haemophiliacs cando – rowing, cycling, swimming,running, any kind of athletics,which are reasonably risk free.”


Membership

12

What’s going on in Wales?In Wales the Society continuesto campaign for bettertreatment for patients andsupport for victims andbereaved families affected bycontaminated blood.

Last year this resulted in a WelshGovernment Task and FinishGroup Review of HaemophiliaCare. The Society provideddetailed information on theshortfalls in treatment andpersonal experiences frompatients in all parts of Wales. InNovember 2012 the HealthMinister Lesley Griffithsannounced additional fundingof £96,369 to provide counsellingservices, but this has failed toaddress the major clinicalconcerns of the Group.

Patients are still unable toaccess a Hepatologist in Cardiff,whereas Physiotherapy is onlyavailable in Cardiff. Additionally,those affected bycontaminated blood, includingbereaved families requirefinancial support, access toInsurance and a Public Inquiry.

On 29th November Chris James,David Thomas and I addressedmembers of the Welsh AssemblyGovernment. In attendancewere Cardiff HaemophiliaCentre Clinical staff, 40 patients,parents and bereaved familieswho discussed their personal

experiences. The meetingconcluded with 8 AssemblyMembers agreeing to join theCross Party Group onHaemophilia andContaminated Blood. Thegroup has already tabledquestions to the Health Ministerand the First Minister CarwynJones regarding Physiotherapy,Liver Services in Cardiff, lack offinancial support for patients’families and bereaved familiesaffected by contaminatedblood.

On 28th March the Society metwith the Health Minister tooutline existing gaps in careand support, and askedthe Minister to commit toacting on the findings ofthe Penrose Inquiry.

Society members inWales should contactthe Society, AMs andMPs about issues thataffect them to increasesupport from AssemblyMembers acrossWales.

An All Wales Inherited BleedingDisorder Advisory Group hasnow been set up by theWelsh AssemblyGovernment and I am theSociety representative.

Lynne Kelly Haemophilia Society Trustee

Membership

13

The view from the Clifton BridgeNews from the Bristol and South West Local Group

If ever you’re in Bristol on aWednesday evening youwould be very welcome tocome along to the BristolHaematology and OncologyCentre and join the Bristol andSouth West Group for tea,biscuits and chat. Actually, itwould probably be a goodidea to phone theHaemophilia Centre first as wemeet once every six weeksand we’d hate your visit to bein vain.

The Bristol Group has been inexistence for almost twentyyears; as with most groupsthere have been difficult timesbut we have always managedto be there when we’reneeded. And during this timewe have notched up somenotable successes. With thesupport of the Centre staff andthe hospital managers wecampaigned for our Centre tobecome a ComprehensiveCare Centre and, eventually,the Centre and its excellentstaff got the recognition itdeserved; we continue tohave strong linkswith Centre staff.

We cover a largearea and havecontact as far

south as Cornwall, Somersetand Devon and north toGloucester. Those of us whomeet on a Wednesdayevening are a diverse crowd,representing the range ofbleeding disorders that use theBristol Centre. Committeemember, Josie, is our link withthe Bristol Children’s Hospital;she has two young sons withHaemophilia.

We are not a great fund raisinggroup although we do takeadvantage of any opportunitythat arises. Bike rides, ChristmasParties, Bowling parties andsummer bar-b-ques are someof the events we haveorganised.

As a break from the tea andbiscuits every couple ofmonths the group meet in alocal hostelry for a meal and aglass of something; these arereally enjoyable evenings andplay an importantpart in keepingus fresh andenthusiastic.

Bill Payne Bristol and South West Group

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Links with Central Africaon World Haemophilia DayOn World Haemophilia Day on17 April, members of the AfroSupport Group along with DrDaniel Hart, Haemophilia NurseKate Khair, and I made contactvia video and phone links withdoctors, families and healthprofessionals in the members’original home countries in Africa.The aim of the event was tolearn about the problems withdiagnosis, treatment and typesof support available in thesecountries and also to shareinformation on management ofbleeding disorders where therewas little or no availability oftreatment.

We organised live links withdoctors in Nairobi in Kenya, withdoctors and family members inKinshasha in the DemocraticRepublic of Congo, with thepresident of the CameroonHaemophilia Society, and withfamily members in Nigeria andthe Ivory Coast.

From a social perspective, theAfro members asked mothersand their sons in Africa aboutquality of life; according tothem there was no quality of life,just pain and many days missedfrom schooling because ofbleeds.

The link let us pass on to thesefamilies and health professionalsadvice on the management ofpain and bleeds.

The Afro Support Group wouldlike to support thesecommunities by helping themaccess information onmanagement of bleedingdisorders and safe factordonation organisations.

Members of Afro plan to meetwith the Central AfricanNational Members Organisationsto discuss these points at theWorld Federation ofHaemophilia Congress in Parisand to build on this to improvethe lives of people with bleedingdisorders in these countries.

The main points raised were: Inadequate safe treatments in Central

Africa. Whole blood is bought from

individuals. Kenya lacks skilled maintenance

workers to service diagnosticequipment.

Knowledge of the presence ofbleeding disorders within Africanfamilies in Africa is usually passed onvia relatives who have beendiagnosed in Western countries.

Poor treatment, hospital infrastructure,and shortcomings in transport andcommunication were strongcontributors towards poor communitysupport.Misconceptions around bleedingdisorders and voodoo.

Georgie RobinsonHaemophilia Society

Information & Support Manager

Membership

15

Membership

MartinReid’sStoryI was born in June 1980 andwithin a few hours wasdiagnosed with Haemophilia A.My grandfather hadHaemophilia so it came as nosurprise to my Mum and Dad. Ihad a fairly normal childhoodfor someone with Haemophilia.There were certainly plenty ofvisits to hospital for treatment.I had everything from knocks,bumps and getting teeth out tomore severe problems likebeing infected with Hepatitis C.I had always enjoyed art froma young age and spent manya day lying in a hospital warddrawing and sketching. I neverrealised this would lead toworking in a creativeprofession and running myown business!

Secondary School wentwithout any incidents but Irealised there were certainthings I should avoid - like theopportunity to play for theSchool rugby team! It was atSecondary School I decided Iwanted to work in a creativeenvironment.

After 3 years studying art anddesign at college I eventuallyspecialised in Graphic Design.In the real world my first full-time job was working for alocal newspaper. After that Iwent on to work at a leadingadvertising and design studioin Aberdeen.

In 2011 I decided the time wasright to start my own business.I had been given the all clearfrom the Hepatitis C virus aftera gruelling 18 months oninterferon which wasn’t easywhen holding down a full-timejob. A full year later mybusiness, Reid Advertising &Design, is going from strengthto strength. I currently workfrom my home studio whichhas been great and I’vemanaged to work with someof the leading companies inAberdeen.

I guess all the doodling anddrawing in hospital did mesome good in the end!

We welcome punchyautobiographical articles frommembers, so that readers cansee that people with bleedingdisorders are like other people,only more so.

Martin ReidHaemophilia Society Member

Book ReviewFunny Blood - The remarkable storyof my daughter Ros by Juliet Batten

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A very moving book written byJuliet about her daughter (Ros),who has von Willebrand’sDisease. This account spansfrom Ros’s adoption as a baby in1974 to her marriage in 2003.

Many parents who havechildren with bleeding disorderswill relate to this book. It’s also aunique and historic book as it isthe first experiential accountwritten about women withbleeding disorders. It is aninspiring story of how this familycoped (with remarkableequilibrium given thecircumstances!) with the trialsand tribulations of daily livingwith a severe bleeding disorder.It is also bleak reading about thehorror of the tainted bloodcontroversy. Hepatitis Cinfection and the treatment(with its debilitating side-effects)impacted greatly on ablossoming young life with somuch potential.

However, I won’t leave thisreview on a negative note asthat would be doing an injusticeto the people in this book whohave coped with suchbuoyancy and resilience and

have surmounted adversity forRos to lead “as normal a life as ispossible”. This is what we wouldall wish for, for both ourselvesand future generations ofbleeders. I’m left wanting more,maybe Juliet and Ros can makea start on the rest?

Review by HaemophiliaSociety member,Helen Campbell

Published by Quack Books for £10.50pISBN 978-1-904446-37-8Also available on Amazonfor more information please [email protected]

“This really was a case of notbeing able to put a book down.It is moving, lucid, very easy toread and with a strong appeal.”Ruth Rendell

www.youngbloods.org.uk

Osmington BayOn the 30th of April we took 18 children to thePGL Activity Centre at Osmington Bay. There wasso much for us to do!

Abseiling AeroballArchery Beach Walk

Giant SwingClimbing

Jacobs LadderProblem SolvingCamp Fire

Zip Wire

Team GamesDisco

Osmington Bay


Jacobs Ladder

Team Games

ZipWire

Everyone!

Osmington Bay

Our thanks go to our Youth LeadersNeil Johnson, Sam Richards andSharon Thomson who were fantasticas usual. We are also pleased towelcome Rob Barnard, Charlie Smithand Maria Buckland who are our newYouth Leaders and quickly got togrips with it all.

Our special thanks must go toPatricia Bell and Kingsley Lawrencewho were our Specialist HaemophiliaNurses. Without specialist nursesgiving their time these weekendswould not be possible.

Our PGL Leader was excellent atguiding us through our stay at thecentre and understood our aims. Thechildren had a fulfilling time at thecamp fire explaining to the other PGLstaff their bleeding disorders.

The children enjoyed practising theirtreatment technique of infusion onthe ‘fake arm’ which was borrowedfrom Great Ormond Street. Theyouth leaders were willing for theirown arms to be practiced on too.

Vicky Sutton-SmithGroup Leader

Haemophilia Society Children & Families Officer


b u t t e r f l y n e e d l ef y o n b i i n a u o i e n dv r o f a c t o r r o s g r uh p m u b n e y e s r n a i ea o v n e i f t c e i t m m ye r l i u t t e o m a t e a om n t i d y u p m m i n s g uo a c o d o t i b s s d e e np l a y o a w i i l n o v f gh o v t c s y v n w e t y r bi t i d t o m m a e t e l i ll i l o o d e e n i l a d e oi a l i r u n t t c o i u n oa c t t e t p h i l l o m d dv o n w i l l e b r a n d s s

factorfunrecombinantswimmingbutterfly needlefriendsyoungbloodsholidayhaemophiliavon Willebrand'sgamespatientnursedoctorclotbleedrunplaybumpfittidy upsmile

GamesWordsearch

Colouring In DottoDot

Karen has vonWillebrand’sDisease.You can findout more onthe YoungBloodswebsite


Volunteers

21

Adam Fleming is our newest TrusteeI am 29 years old and have severe Haemophilia A.Professionally I work as a Solicitor in Southend, Essex.Outside of work I play cricket to a good standard,and have played 1st XI cricket in the Essex Leaguesince I was 19. I have been Club Captain atHadleigh & Thundersely Cricket Club since 2004 andhave played against many professional cricketerspast and present during that time. I am also a fair-weather golfer with a handicap of (roughly) 16.

I have wanted to become more involved in theHaemophilia community for some time andresponded to an advert on the Society’s website fora trustee position. I am a great believer, probablydue to the attitude that my doctors and parentstook while I was young, that people with bleedingdisorders should be encouraged to lead as full andactive a life as possible.

It could be you – becoming a Trustee

Adam FlemngHaemophilia Society Trustee

The Society needs Trustees torepresent the different facets ofthe bleeding disordercommunity and to bring skillsand experiences to help run acomplex national organisationand to keep it relevant to itsmembers.We are keen to have not onlyTrustees who themselves havebleeding disorders, but alsoothers who have becomeclosely involved in the issuesand may bring a fresh

perspective – these may befamily members or partners, orclinicians, helpers, or friends, orindeed just “others”.

Because we are a smallorganisation, individualTrustees can and do make abig difference. If you areinterested in finding out moreabout being a Trustee, pleasecontact me [email protected] or020 7831 1020.


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World Haemophilia Congress Bid

GLASGOW218In February, the World Federation of

Haemophilia gave us the fantasticnews that our bid to host the WorldFederation of Haemophilia 2018World Congress in Glasgow was intheir shortlist of two. It would be amassive honour to host theCongress, which has never beenheld in the UK. This is a greatachievement and we'd like tothank everyone involved, includingall those, particularly in Scotland,who’ve been involved for a numberof years in developing the bid. Abig thank you to the volunteers onthe bid team including SusanWarren, Nancy Brodie, Dr AndrewBrewer, Liz Rizzuto and Dr PaulGiangrande and the ScottishExhibition and Conference Centreand SeeGlasgow – they’re alldoing a great job.

We now move on to Paris in Julywhere we'll be presenting our bid tothe members of the WFH GeneralAssembly who will choose which ofthe two cities involved will host theCongress. We are working hard topull everything together ready forour presentation. We are confidentthat we have a very strong bid andthat together the HaemophiliaSociety, the SECC and the City ofGlasgow have a great chance ofwinning.

It would also be a huge boost tothe Haemophilia Society and toHaemophilia Scotland in our workover the next six years.

Many thanks for all our members’support for the bid; we'll keep youposted on the result – and hopefullyon success in the bid and then onour next steps in preparing for theCongress itself. Paris, here wecome!!


We've made it to thefinal vote to host theWFH Congress 2018

Are you attending the WFH Congressin Paris this July? Would you give asmall portion of your time to assistthe Haemophilia Society?

There will be a Haemophilia Societystand in the exhibition hall of thePalais de Congres in Paris. In orderthat this stand can be mannedduring the whole Congress, we reallyneed volunteers to help.

If you would be willing to give upeven an hour of your conferencetime to help, please contact SusanWarren ([email protected])or Chris James([email protected]) orNancy Brodie([email protected])and we will arrange a slot on thetimetable which suits you.Many thanks in advance for yourhelp – which will really improve ourprofile at the Congress! And if youcan’t help – do drop by.

23

Haemophilia Scotland

Scottish Parliament ReceptionOn 29 February Haemophilia Scotland held a reception in theprestigious Garden Lobby of the Scottish Parliament. As part ofthe event Haemophilia Scotland had a stand just outside the de-bating chamber for all of that week.

First Minister, Alex Salmondand Leader of the ScottishConservatives RuthDavidson were just two ofthe MSPs who dropped by.

Richard Lyle MSP hosted the event and spoke first

Kay Mutch spoke movingly about family life with a bleeding disorder

Bill Wright urged MSPs to use the Penrose Report to improve care for all

Clockwise: BruceNorval & Mike Winter;Susan Warren andRichard Lyle MSP; DavidGrey MSP & CarolynMcGimpsey; Bill Wright & Family with John

Swinney MSP; The Edinburgh HaemophilaCentre Team with Willie Rennie MSP;Andrew Brewer & Annabelle Goldie MSP.

Dan

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Scottish Parliament and

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idophotography.co.uk

Services

24

Developing guidelines forageing with HaemophiliaThe Haemophilia Society andNorth Hants HaemophiliaCentre are working together toexamine the impactHaemophilia has upon ageing,with a view to developingGuidelines on Ageing andHaemophilia. The UKHCDO hasexpressed an interest in thiswork.

With an increase in lifeexpectancy, health and socialroles within the Haemophiliacommunity may have tochange due to an increase inthe complexities related tomobility difficulties, poorvenous access and thedevelopment of chronicconditions of the heart, liver, orkidneys.

To address these issues, we aredelivering symposiums in theUK. During these meetings,members are given theopportunity to share theirexperiences, expectations andfears related to ageing withkey health professionals. Themain focus of the meetingsheld so far has been in areassuch as shared clinics for thosewith multiple conditions,

matters related to accessingcaring in peoples’ own homesand in nursing and retirementhomes.

We hope to work with theUKHCDO to developguidelines providing standardsfor health and social care, aswell as promoting thewellbeing of all those ageingwith Haemophilia.

A member attending a sessioncommented:

‘The symposium was veryvaluable in coming up withideas to help the situation ofolder patients. I just hope theNHS will take notice of the newguidelines when they arewritten.’

If you are interested inattending a symposium,please contact me on 0800018 6068 for further details.

By Georgie RobinsonHaemophilia Soceity

Information & SupportManager

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Try our new Health Days

During 2012 the HaemophiliaSociety will be running four

“health days” for its memberswho are over fifty. These willgive advice to raise healthawareness and promoteactive and healthy ageing inthe bleeding disordercommunity.The days will include advice forpreventing ill health and alsowill give an opportunity to takeup two taster sessions: on TaiChi, which many peoplebelieve helps decrease stress,increase lower body musclestrength, and improvebalance, posture, and mobility,and on ‘Mindfulness’, atechnique which some people

believes benefits their mentalcapacity and helps managingchronic pain.

Health days are being offeredto members of theHaemophilia Society over theage of fifty; they will be atBasingstoke, Scarborough,Liverpool, and Bristol.

If you would like to have moreinformation on The Health Daysplease contact me on 0800018 6068 or by email.

Georgie RobinsonHaemophilia Society

Information & SupportManager

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DISABILITY LIVING ALLOWANCE (DLA) FOR ADULTS TO BE REPLACED BY PIP IN APRIL 2013

Benefits UpdateThe new Personal IndependencePayment (PIP) will replaceDisability Living Allowance (DLA)from April 2013. New claimantswill have to claim PIP rather thanDLA from that date. Existing DLArecipients will be re-assessedbetween October 2013 andMarch 2016.

We believe that many of ouradult members who currentlyget DLA will be worse off underPIP. In particular, manymembers who currently qualifyfor the higher rate of MobilityComponent of DLA may notqualify for the new EnhancedMobility Component of PIP.

MAIN FEATURESPIP will be for adults aged 16 –64. DLA will continue for chil-dren under 16 and for adultsaged 65+ while they continue toqualify

There will be two components ofPIP - a Daily Living Componentand a Mobility Component.

Each component will bepayable at two rates – StandardRate and Enhanced Rate.

Assessment will be made bycomparing the problems aclaimant faces against

‘descriptors’. Points will be

‘awarded’ for the descriptorsthat fit.

The ‘threshold’ for the StandardRate of each component will be8 points. 12 points will beneeded to qualify for theEnhanced Rate.

A medical assessment by aDepartment of Work & Pensions(DWP) appointed Health CareProfessional is likely in most cases.

All awards will be for a limitedperiod. Re-assessments andreviews will be common.

The proposed weekly rates of PIPwill not be published until theAutumn Statement.

THE MOBILITY COMPONENT

A claimant will be awarded 8points (qualifying for theStandard Rate) if they canmove up to 50 metres unaidedbut no further. This is similar to

the current test for the higherrate of DLA Mobility Component.

A claimant will be awarded 12points (qualifying for theEnhanced Rate) only if theycannot move up to 50 metres

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without using a wheelchairpropelled by the claimant.

Some members with developingjoint damage and associatedrecurrent bleeds can sometimesqualify for the higher rate of DLAMobility Component becausethe exertion required to walk islikely to lead to a seriousdeterioration in health. There isno similar descriptor for PIP.

We believe that few of ourmembers currently receiving thehigher rate Mobility Componentwill qualify for the newenhanced rate. Many may failto qualify for the standard rate,particularly if they meet thedescriptor on some days but noton the majority of days.

THE DAILY LIVING COMPONENT

Although the descriptors takeaccount of ‘managing therapyor monitoring a healthcondition’, 8 points (thethreshold for the Standard Rate)will only be awarded if theclaimant needs supervision,prompting or assistance tomanage therapy that takes atleast 14 hours a week.

Further points will be awardedfor difficulty with ‘bathing andgrooming’, ‘managing toiletneeds’ and ‘dressing andundressing’ (amongst others)but only if these difficulties occuron the majority of days. We

believe that only our mostdisabled members will qualify forthe Daily Living Component,particularly the Enhanced Rate.

WHAT NEXT?

The final PIP assessmentregulations will be laid beforeParliament in the Autumn. Wewill work as part of the DisabilityBenefits Consortium (a group ofover 50 organisations workingtogether to amend theregulations).

We are giving thought topossible amendments theHaemophilia Society might seek(given our limited resources).

We will post further informationto our website as it becomesavailable and publish initialguidance on claiming PIP shortlybefore April 2013.

MORE INFORMATION

www.dwp.gov.uk/pip(particularly the FAQ page).

http://www.disabilityalliance.org/dbc.htm (Disability BenefitsConsortium).

Nigel PegramHaemophilia Society

Benefits Information Worker

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MPs Debate HaemophiliaPolicyThe Haemophilia Society isdetermined to keep fightingfor the best possible treatmentand care for everyoneaffected by bleeding disorders.Understandably, many MPsknow most about us from thecontaminated bloodcampaign. However, the NHSnow has to watch every pennyand there are big changescoming because of therecently passed Health Act.Diana Johnson, Co-Chair ofthe All Party Group onHaemophilia secured aparliamentary debate on

Haemophilia Care on 8February. Many MPs referredto Haemophilia Societysuggestions for serviceimprovements based on whatyou told us in the last members’survey.

In her response the Minister,Anne Milton promised that anexpert group looking at theimpact of hepatitis C wouldinclude patientrepresentatives.

Diane Johnson MPled the debate

Dan FarthingHaemophilia Society

Policy andCommunications

Manager

Contaminated Blood

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vCJD UpdateThe TSE Risk Assessment Sub-Group is a new group givingscientific advice to Governmentabout the vCJD risk.

When reading the minutes thatestablished the sub-group theSociety learned that there hadbeen a discussion aboutwhether non-consensualmonitoring was appropriate.We were shocked that there wasever any suggestion of non-consensual monitoring.

The idea that bleeding disorderpatients might be monitored fora deadly infection without beingfully informed will send shiversdown the spine of everyonewho remembers the devastatingimpact of HIV and Hepatitis Con people with bleedingdisorders. Any proposedframework must be reviewed byan ethics committee, and opento challenge from individualsand organisations such asourselves through a formalconsultation process.

The Society has said that ratherthan relying on surveillance ofrecipients of thesecontaminated blood products,patients should be offered theopportunity to be tested forvCJD, with pre and post-testcounselling, as soon as a testbecomes available.Government must do all it canto make sure a practical test isavailable as soon as possible.We would also like to seecontinued research on otherareas of potential vCJDtransmission, for exampleeffective sterilisation of surgicalinstruments.

Although the eventual decisionin this case was to make testingconsensual, we have written to

the Chair of the committee toraise our concerns and to obtain

assurance that there will neverbe testing without the

individual’s consent.

Dan FarthingHaemophilia Society Policy &

Communications Manager

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Membership

The thought of putting anuclear submarine togetherwould probably tax the fittestamong us. Squeezing intosmall spaces, and welding andgrinding metal parts with theever present danger of injury isa daunting and intense job forsomeone without anybleeding issues but Tom, 20,who was diagnosed withsevere Haemophilia aged two,clearly relishes it.

“I go home at the end of theday and I can see what I’vemade,” he says. Tom, whoworks as a steelworker at BAESystems in Barrow, fought to dohis very physical job eventhough his parents, protective

of him, pushed him towardsa safe office job and

university.

Tom has two younger brotherswith severe Haemophilia,(“There are a lot of fridges inour house”), and he wasdrawn to the shipyards from anearly age, and many of hisrelatives worked there. “Iremember playing withhammers as a little boy,” hesays.

He was particularly inspired bytaking part in a “bring yoursons to work day”, with hisfather.

BAE Systems offered him anoffice job but he turned itdown, and when he was 16 hewas taken on as anapprentice. He had beenworking on a building site sincehe was 14, already keen to testhimself with physicallydemanding work.

”I didn’t want to work in anoffice,” Tom said. He was sentfor medical tests to make surethere was no physical reasonwhy he couldn’t be asteelworker, and theexamining doctor backed himup.

Like many high achievers whohappen to have Haemophilia,Tom is responsible about hismedication – he can stillremember what it was like forthe first seven years of his life

Tom Crow builds nuclear submarines!

31

before he had prophylaxis. “Ihad quite a lot of bleeds,” hesaid. “I was always in splints oron crutches.” Prophylaxis wasa “massive change”, and he isgrateful that advances intreatment have allowed himthe chance to do what earliergenerations could only dreamof

Last summer he went out toPeru with a group ofapprentices and graduates tohelp build an orphanage. “Weare so lucky – you see theyoung children there – and it’sbad enough being an orphanhere, but in a Third Worldcountry it’s a completelydifferent story.” He found itvery motivating workingalongside the older orphansand the Peruvian nationalarmy to put up the livingaccommodation, and everyday they played footballtogether afterwards. “I did notwant to come home.”

Tom is not nervous abouthurting himself. “I am just thesame as anyone. There isalways the chance of havinga bad injury, but everything isdone as safely as possible.”

His Haemophilia does not holdhim back and he proudlyexplains that he has the bestsickness record of all BAEsystems apprentices. “The only

time I was off was because ofswine flu.”

In 2011, Tom was named theEngineering EmployersFederation North West FinalYear Apprentice of the Year,and in February this year, hewas chosen as BAE SystemsNational Apprentice of theYear. He has been nominatedfor the World Skills 30 Under 30award and the NationalApprenticeship ServiceChampion of the Year award.

He is happy doing a job heloves and conscious it couldhave been very different if hewas born earlier. “There is nodiscrimination now and no reallimitations at all. Lots of jobsthat 20 years ago you couldn’thave done, now there is noreason why not. There is noreason not to go for it.”

“My granddad hadHaemophilia and he worked inthe shipyards that I am in. Hewas stuck in an office as anaccountant. He wanted towork on the shop floor.” Tom ishappy that a generation ortwo later he is able to turn hisback on the office and takeup his tools.


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Our Tribute

We were greatly saddened tohear of the passing of JackAshley. He was a tirelesscampaigner. For more than 40years, first as an MP and thenas a peer, he fought for therights of the underprivilegedand the disadvantaged.His work alongside our ownPresident Lord Morris ofManchester on behalf of theleast fortunate in society wonhim the admiration andsupport of politicians from allparts of the political spectrum.Lord Morris said his passingwould be mourned byeveryone who had theprivilege of knowing him.

His causes were many andvaried. Jack Ashleyconducted high-profilecampaigns on behalf ofwidows, battered wives, rapevictims, disabled people, andthose with mental illness.Showing the energy that wastypical of his work he helpedpioneer live captioning on

television fordeaf people.

And, mostchallengingly,he sought tohelp the victimsof thalidomide. Angered bygovernment handling of thethalidomide scandal, Ashleyresigned from his post at theDepartment of Health andSocial Security in protest.

He introduced his last bill to theHouse of Lords in 2007, just aweek after his 85th birthday,arguing for Blue Badges toallow easy parking for peoplewith autism.

In 2009 he stood down fromthe influential All PartyParliamentary Disablementgroup, which he had foundedand chaired for four decades.Made a lord in 1992, Jack Ash-ley always decried his ownachievements, saying: "I wassimply bringing about changesin the working environmentand in the places where peo-ple lived. I think mine was apragmatic approach."


Jack Ashley(Baron Ashley of Stoke)

Lord Morris feltprivileged to have

known him

Fundraising

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Thank you! The Haemophilia Society wouldlike to thank ALL ourfundraisers; we wouldn’t beable to do all the work we dowithout your support.

On the 3rd November 2011, JuliaMitchell fulfilled a long time dreamto do the Peru Trek and raised£1,901 for the Haemophilia Society.

I'm really pleased to tell youthat I completed the LondonMarathon. It was great to bepart of such a fantasticoccasion and to be running forthe Haemophilia Society. I'dlike to thank all the members,volunteers and staff of theHaemophilia Society for theirsupport and encouragement.For those who are interested ittook me 4 hours and 12minutes - didn't quite manageto break 4 hours but maybenext year?!

So far I’ve raised over £4,000for the Society and I wouldreally like to thank all of youwho gave so generously - Ireally do appreciate it. Andthere is still time to give it youwish – you can do this by goingtohttp://www.justgiving.com/chris-james2 and making adonation.

Very many thanks to everyone.

Fundraising

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David Marstin, Ben Jeffrey, Barry Rose, Chris Bray,Darren Melvin, Kim Sandhu, Ben Buckers, JoeJeffrey, Jamie Walker, Dave Thompson and TomasGill at 24/7 Media grew moustaches for

‘Moustachiou Movember Madness’ raising £2,831 forThe Haemophilia Society.

Paul Richards ‘in a fitof madness’ joined histwo friend Andy andIan on a cyclechallenge from Land'sEnd to John O'Groat'sand raised £1,715.

Zeinia Nunn did a5mile sponsored walkwith baby Layla andraised £440.

Nathan Goodwin did a10,000ft sky jump over theStratosphere Hotel in LasVegas raising £195 for theSociety.

Aimee Smith organised acharity quiz night and raffleand raised £1,460.

Fundraising

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A ‘Golden’ Thank You fromthe Northampton Group

Over the years our friendsJohn and Ruth Gardner havesupported us and the Societyby helping at dances,teaparties and other fundraising eventsIn 2011, the year of theirgolden wedding anniversary,they celebrated itwith 40 friends forlunch andrequested nopresents butdonations forthe HaemophiliaSociety.

The luncheonraised £335. The photo wastaken in their home.

Our grateful thanks isextended to John and Ruthfrom Margaret and DenisVaughan, NorthamptonGroup.

Three newly married couples also decidedto forgo wedding gifts and opted to raisemoney for the Society.

� Eileen and Terry who raised £2,220.

� Catherine and Gareth Adams raised£3,250 in memory of Catherine’s latebrother Richard.

� Lisa and Steven Crane raised £350.

A huge thank you goes to all of them!

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Challenge Events

Do you want an invigoratingchallenge? Here’s yourchance. The HaemophiliaSociety is looking foradventurous people to do asponsored parachute jump toraise vital funds.There are three types of jumpsavailable, an ‘AcceleratedFreeFall’ where you canexperience the thrill ofskydiving solo from up to12,000 feet, a ‘Tandem Skydive’from 10,000 feet attached to aprofessional and experiencedinstructor and a ‘Static Line’which is performed solo fromup to 3,000 feet. You can jump

from any one of 20 BritishParachute Associationapproved airfields across theUK. No experience is requiredas all training is given and ifyou raise £360 (dependent onthe jump chosen) you willreceive your jump free.

So if you are looking to dosomething exhilarating for agood cause, give me a call atthe office on 020 7831 1020 [email protected].

For insurance reasons some peoplewith bleeding disorders are not able

to take part in challenge events.

Get in touch

37

Whom should I speak to?Have you ever wanted to talk tothe Haemophilia Society aboutsomething but haven’t known whoto talk to?

This is your cut out and keep guideto who does what at theHaemophilia Society. For each

member of staff it will tell youwhat they do and how to get intouch with them.

There is even a picture so you canrecognise them at HaemophiliaSociety events!

Help us raise moneyCarmina [email protected] Treguer - Community Fundraising & [email protected] us or change you membership details:Tom Bradley - Membership & [email protected] help with your benefits claim:Nigel Pegram - Benefits. Wednesdays & Fridays. 10am - [email protected] 020 7269 0686Find out about events or get information aboutbleeding disorders:Georgie Robinson - Information & Support [email protected] the latest about our children’s activity holidays:Vicky Sutton-Smith - Children & Families [email protected] back expenses or other financial matters:Rachel Goodkin - Finance & Office [email protected] media, lobbying or the website:Dan Farthing - Policy & Communications ManagerAlison Smith - [email protected] 0131 557 [email protected]

Chris James - CEO - [email protected] has responsibility for all of the work of the Society

Unless another number is given call

020 7831 1020

Feedback

38

It could be you!

Supporting Local Groups –Volunteers neededThe Society is very keen tocontinue the work carried out byDavid Henderson in developingour Local Groups. These are thefront line in providing personalsupport to individuals and familiesaround the country. David madea huge difference, and we wantto build on the great legacy heleft us. We are seeking to find atleast one volunteer to continue hiswork and an intern to systemisethe way in which Local Groupscan communicate with theSociety and with members:

Local Groups Co-ordinator – thisrole (probably one day a week)would help us to develop newLocal Groups. It would also helpensure that new and existingGroups have resources to supportmembers locally. It will ideally bebased at the London office, butthere will be some travel aroundthe UK. You will get full supportand we do cover your expenses.If someone wants to help in thiswork as a volunteer based outsideLondon, we would also like tohear from you.

Web Manager – Local Groups –this is a short term Intern role(approximately 3 months for 3 or 4days a week) to help set up theLocal Groups pages of thewebsite. This will involve workingwith the Groups to allow them totake ownership of the pages anddevelop them as they would like,ensuring that they contain fulldetails of contacts and activityand are kept up to date. This maysuit someone aiming for a careerin charities who wants to developskills in web management and incoordinating across a largeorganisation of volunteers. Againwe would give appropriatesupport and pay expenses.

If you would more informationabout either of these roles pleasecontact Chris James [email protected] or 0207831 1020

This edition of HQ includes more news about what you, our localgroups and members, have been doing. We want to do evenmore of that in the future.

If you have an idea for an article then we want to hear from you.

We also want volunteers to helpproduce the next edition of HQ.Desktop Publishing skills wouldbe ideal but not vital. Pleasecontact Dan [email protected].

Your letters

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We are your Society and this is your members’ magazine. Wewant to include much more from you in future editions. For thatreason we are starting a letters’ page. We want this to becomea place where you can debate your ideas about anything to dowith bleeding disorders.

Our Facebook pages often host debates like this but we knowthat many of you are not on Facebook or just prefer tried andtested pen and ink. However, to get the ball rolling here aresome of the questions that have led to interesting debates online:

Is the military/forces a definite no-go with Haemophilia?

I'm 16 and I have von Willebrand's type 2b, I have a lotof nose bleeds and I'm hospitalised about twice a yearfrom them. I am really wanting to try ice skating butmy nearest centre is over an hour away and I don'tthink it is worth driving two hours to get treatment.Do you think I should get treatment or risk it?

� Getting a Job. Do you or do you not mentionHaemophilia?

Or by email to [email protected] with ‘HQ Letters’ Page’in the subject line. We look forward to hearing from you.

If you have something to say about any of these questions orhave comments or questions of your own then please write to usat:

We want to hear from you

© The Haemophilia SocietyOpinions expressed in HQ do not necessarily reflect those of the HaemophiliaSociety. We welcome non-commercial reproduction of articles on theunderstanding that acknowledgement is made of HQ as a source.

Thanks go to the following pharmaceutical companies who are providingvaluable support: Baxter Bioscience, Bayer, CSL Behring, Grifols,Novo Nordisk and Pfizer.

Copies of the Haemophilia Society’s commercial funding guidelines areavailable on request.The content of HQ is for general information only. If you are experiencingsymptoms or you are concerned about any of the issues raised in the

Ensuring that people with Haemophilia and related bleedingdisorders and their families receive the best quality care,

treatment and support.

The Haemophilia Society1st Floor, Petersham House, 57a Hatton Garden, London. EC1N 8JG

Tel: 020 7831 1020 Fax: 020 7405 4824Email: [email protected]

www.haemophilia.org.ukwww.inhibitorsupportgroup.orgwww.womenbleedtoo.org.uk


Freephone information and advice helpline sponsored by Verizon

0800 018 6068If you cannot speak to the correct person when you call they will call you

back as soon as possible (usually within 3 working days).

Registered Charity No: 288260 (SC039732 within Scotland)Company Limited by Guarantee Reg. No. 1763614Member of the World Federation of HemophiliaPresident: The Rt. Hon The Lord Morris of Manchester AO QSOChair: Bernard Manson - [email protected]

Stay in touch

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HQ June 2012

Documents

Transcript of HQ June 2012