HQ Summer 2013

News - Support - Information - CampaigningFreephone: 0800 018 6068 www.haemophilia.org.uk

Benefits Upate

HQTHE MAGAZINE OF THE HAEMOPHILIA SOCIETY • SUMMER 2013

For all people affected by bleeding disorders

World Haemophilia Day p6-7

p24-25

GOINGBLOODRED

Chair’s Report

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Bernard MansonChair

The Haemophilia Society

First, I would like to welcomeBaroness Meacher as our newPresident. We are thrilled that shehas taken on the role; herbackground in health will be a hugeasset for us. Page five has an articleon Baroness Meacher.

In the last HQ, I highlighted our need“to engage as effectively with ourown members as we do withexternal bodies”. Since December,we have worked to improvecommunications and to find outwhat members need and want.

As well as routine meetings withmembers and Local Groups, staffand Trustees have met members atRoad Shows around Scotland; weshould use these as a template for arolling programme of meetingmembers around the whole UK. InMay we held our first Local Groups’Forum for several years; this will nowbe an annual event. We haveheard some difficult messagesabout the past, but also lots ofenthusiasm about the work of theSociety and indications that we arenow on the right track.

In response to one piece offeedback, we do attempt to callback when people leave phone

messages; but please leave a clearmessage including your ownnumber. If we do not call backplease chase – or indeed let meknow.

We are planning improved servicesin areas where we identify highneed, particularly newly diagnosedfamilies and women with bleedingdisorders. Many members willremember their feelings when theirchild was first diagnosed with ableeding disorder; we aim to workwith Centres and Local Groups toprovide better support andpractical advice for new families.Although Haemophilia is normallydiagnosed in the first days of life orat least at an early age, manywomen with Von Willebrands arenot diagnosed until they are adults –or indeed are never correctlydiagnosed. We are planning a trialproject to try to persuade femalestudents to self-diagnose and to visittheir GPs if they believe they mayhave a bleeding disorder.

Everything takes time. We welcomeyour patience, feedback, andsupport.

Society Trustee – Could it be you?The Society needs Trustees who represent people affected by bleeding disorders and havethe skills and experiences to help us improve our services to members or to bring a freshperspective. Individual Trustees can and do make a big difference. To find out moreplease contact Chris on [email protected] or 020 7831 1020.

We are particularly keen to hear from anyone with a financial background interested inbecoming Treasurer; Tim Metzgen, who has served us ably, ends his term in November andcannot stand again.

Chief Executive Officer’s Report

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Chris JamesChief Executive Officer


It seems a little odd to be writingan update on activity in theSociety when I missed a chunkof it while incapacitated with afractured knee cap and spenttwo months in a cast from thighto ankle. I must thank the Boardand the staff team for all theirsupport and for putting up withmy absence from the officeover the past few months. Unlikemany of you reading this mydirect experience of the NHShas been very limited in recentyears. Overall my care waspretty good but I did see foronce first-hand the challengespeople face in getting accessto the services they require andthe pressures that the NHS as awhole is under. One lesson Ilearnt was always write downyour list of questions before youhave an appointment!

This issue of HQ shows the widerange of activity that the Societyis involved in, from providingsupport for people with Inhibitorsthrough to our benefits servicewhich tries to keep you informedof changes to the currentsystem. The articles on traveland careers are very gratifyingto see and reflect that improvedtreatment is removing more andmore barriers to people withbleeding disorders. We willdevelop these areas in futureissues of HQ and on the website.

It is also very encouraging to seea number of articles that reflect

the Society’s work throughoutthe UK and bringing peopletogether including the ScottishRoad Shows, Local Groups, thevalue of peer support and ahighly successful WorldHaemophilia Day. Let’s hope wesee more of this in future issues.

Our programme of visits toHaemophilia Centres isunderway, and we’d very muchlike to hear from you if youwould like to volunteer to takepart. If you are interested,please contact me for moreinformation [email protected] or callthe office.

I would like to pay tribute to allof our nine runners in the LondonMarathon – I know fromexperience what it takes to trainfor and run a marathon. They alldid incredibly well and hopefullysome will be back next year.

On the subject of fundraising weoften forget to mention that weare a charity. We depend onour members and supporters notonly to raise funds but to makepeople aware of this fact. Weare so grateful to everyone whoraises money for us or makes adonation. Thank you for all youdo to support our work for thebleeding disorder community.

Diary

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These are some of the events whichthe Society or members will beinvolved in over the next 12 months.We maintain a full diary on thewebsite, and are aiming to extendit to include Local Group activities.

2013Julyl 14th – British 10k London Run.l 25th/28th – Inhibitors Summit, Nashville.l 26th/29th – Children’s Activity Weekend,Perthshire.l 28th – World Hepatitis Day.l Formal Notice of AGM and call fornominations for Trustees.

Augustl 4th – Prudential RideLondon 100 cyclingevent.

Septemberl 7th/8th - Women’s Information Weekend,York.l 14th/15th – Inhibitor Residential Weekend,Stratford upon Avon.l 20th – Jeans for Genes Day.l 23rd – Haemophilia Alliance Industry Forum.l 27th/29th – New Families Weekend, Ascotl World Federation of Haemophilia GlobalForum, Montreal.l APPG for Haemophilia and ContaminatedBlood, London.

Octoberl 4th/6th – European HaemophiliaConsortium Conference, Bucharest.l 17th – European Haemophilia ConsortiumRoundtable.l 26th – 2.30pm Service of Thanksgiving andRemembrance. The Charterhouse, London.

Novemberl Haemophilia Alliance and Department ofHealth Meeting. London.l 9th – Annual Conference and AGM. HiltonHotel, Manchester Airport.

l APPG for Haemophilia and ContaminatedBlood, London.

Decemberl 1st – World AIDs Day.l HQ Magazine sent to members.

2014Aprill 17th – Go Blood Red for WorldHaemophilia Day.l 21st - Virgin Money London Marathon.l Children’s Activity Weekend.

Mayl 11th/15th – World Federation of Hemophilia,World Congress, Melbourne.

Junel Inhibitors Group Meeting.l Local Groups Forum 2014.

Julyl British 10K London Run.l 18th/22nd - Trek, Iceland.l Children’s Activity Weekend.

Augustl Prudential RideLondon 100 cycling event.

Octoberl European Haemophilia ConsortiumConference, Belfast.

To find out more about any of these events please call the office on 020 7831 1020.We update the website atwww.haemophilia.org.uk/get_involved/Take+Action/2013+Events+Calendar

KeyBlue = Open to membersGreen = Help raise fundsBlack = Representation

Don’t miss the AGM andConference at the HiltonManchester Airport, 9th Nov 2013

New President

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The Haemophilia Society isdelighted to announce thatBaroness Meacher becamePresident of the Society in March.

Baroness Meacher is acrossbench peer who has beenactive in the House of Lords,particularly on issues of mentalhealth and drug reform. She hashad extensive involvement withthe National Health Service andshe sees a principal part of herrole as supporting theconstructive engagementbetween the Society and theDepartment of Health.

In accepting the role ofPresident, Baroness Meachersaid: “I am pleased to be takingon a role where I can providepractical support. Althoughbleeding disorders are generallywell managed by the HealthService, it is important that thereis a strong patients’ organisationto give early warning of issuesand to help find constructivesolutions. As well as assisting theSociety in its engagement withthe Department of Health, Ihope to assist its campaign toraise awareness of bleedingdisorders among women. Inparticular, I encourage youngwomen to go to their GPs if theyhave concerns.”

Our past President, Lord Morris,was an inspiration in his work forour members. We are delightedthat Baroness Meacher hasagreed to take on the role. Withher considerable expertise inhealth and social care, she willprovide equally valuablesupport in our dialogue withGovernment.

Bernard MansonChair


Baroness Molly Meacher

Baroness Molly Meacher

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World Haemophilia DayWorld Haemophilia Day is on17 April every year, and this yearmarked the 50th anniversary ofthe World Federation ofHemophilia. We decided totake this opportunity to reallyraise awareness and funds byasking people to “Go Blood Red”for World Haemophilia Day.

As you can see from thephotographs, lots of you gotinvolved in different ways andthe day was an amazingsuccess! We raised over £2,000(so far) and reached well over3,000 people on Facebook. Also,from the 17 radio interviews thatwere done by Katie Khair,Specialist Nurse Consultant atGreat Ormond Street Hospitaland Trustee of our Charity, and

World Haemophilia Day

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Tracey Woodward, whose threesons all have Haemophilia A, wereached an audience of 1.3million people! Thank you toeveryone who went Blood Redand to CSL Behring forsupporting our radio campaign.We really appreciate everyone’ssupport in making Go Blood Redfor World Haemophilia Day sucha triumph!

We are hoping to make nextyear’s Go Blood Red evenbigger and better! If you wouldlike to get involved, pleasecontact Nina or Lorna by calling020 7831 1020 or [email protected]

Nina BenscherHead of Fundraising

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Without clinical trials new andimproved treatments cannot bedeveloped. Before a newproduct or a different approachcan be introduced studies arecarried out to find out if it ishelpful or harmful. We, therefore,urge members to considerparticipating in clinical trials.However, any new treatment willinvolve risks for those who takepart which need to be properlyunderstood.

During a clinical trial volunteersagree to take part in specifictreatments, questionnaires orphysical assessments. Eachclinical trial is led by aninvestigator who is usually ascientist or health professional.In Haemophilia, pharmaceuticalcompanies normally fund thetrials and they usually takeplace at main HaemophiliaCentres. Before a clinical trialstarts, an ethical committeeassesses the dignity, rights andwelfare of those who will takepart. The committee has togive approval before the trialcan start. A clinical trial will thengo through four phases set outin regulations.

Phase 1 – Are there any sideeffects? People who don’thave the disease or conditionare often included at this stage.This stage involves a very smallnumber of patients.

Phase 2 - How does it compareto other licensed treatments?This is also a relatively smallstage.

Phase 3 - How does it compareto treatments already on themarket? This study might userandom groups. This is a larger,pre-registration stage whichneeds a statistically validnumber of participants. This canbe difficult to achieve in rareconditions like bleedingdisorders.

Phase 4 - This is the phase afterthe treatment has beenlicenced. The researchersmonitor long term risks or sideeffects, benefits, and how wellit’s working.

Not everyone can participate ina clinical trial; criteria such asage, weight, gender ortreatment regime may have tobe met. Any other medicationyou are on, the length of studyand what type of informationwill be gathered could also berelevant.

If you do sign up then theresearcher must explain all thepotential risks and answer yourquestions so that you candecide whether to consent.You will also be asked to sign aconsent form to agree that youunderstand the trial and wouldlike to take part.

Cinical Trials

What should you know?

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Clinical Trials

People with bleeding disorders are often approached to take part intrials and face the decision about whether or not to take part.Anyone thinking about whether to participate in a trial should makesure they understand the risks, commitment and potential benefitsbefore making a careful decision about whether to take part. Belowis a checklist of issues to think about if you are considering signing upto a clinical trial or study.

Some of these questions will not have a clear-cut answer; however,they will help you think about the trial and also may raise other issues.Remember if you do decide to participate, the consent form yousign is not a contract. All participants can change their minds at anypoint in the study and you are not under any obligation to give areason why. You can always say no to taking part in research or atrial at any point.

Clinical Studies Checklist

Before you sign up, ask yourself:

1. Why do you want to take part in this trial?

2. What are your goals and expectations and are they realistic?

3. What are the risks and side effects? Have you had an opportunity to

speak openly to the investigator or your doctor about them?

4. What are the benefits of taking part in this study? Weigh up the

benefits against the risks and speak to family members.

5. How much time are you expected to give to this study? Will it have

an economic impact? Additional travel is usually refunded for those in

trials.6. Will there be follow up and feedback at the end of the trial?

7. If you benefit from the trial, will you be allowed to continue with the

intervention once the trial has finished?

You may also want to consider:

1. What is the product being studied?

2. Has the treatment been tested before?

3. What tests are you expected to undertake?

4. Who will be administering these tests and what do they know about

bleeding disorders? Who will be overseeing your treatment/intervention?

5. What makes them believe it’s going to work, or why might it not

work?6. Will you be reimbursed for the costs of participating in the study?

7. Will you need to be hospitalised, and if not how often are you

expected to attend the clinic? Is this realistic for you?

Georgie RobinsonInformation and Support Manager

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Scotland

For the third time in recent yearswe have travelled roundScotland seeking the views ofmembers. As usual we visitedInverness, Aberdeen, Dundeeand Edinburgh before the finalmeeting in Glasgow. To makethe events more attractive tofamilies, all the venues werescience centres apart fromInverness where we gathered ina small hotel.

It was very useful to hear ideasfrom such a wide range ofmembers. People told us theirthoughts about howHaemophilia services could beimproved although everyoneacknowledged the hard work of

their own local Centre. Acommon theme was thatappointments shouldautomatically be scheduled forlater in the day for those whowere travelling furthest. Thinkingabout our services, memberswould like to see moreopportunities for children andteenagers to meet othersaffected by bleeding disorders.We have already startedworking on making some of theimprovements you havesuggested.

We also had valuable discussionsabout what recommendationsmembers would like to see in thePenrose Report and how weshould respond to it. The Reportis due to be published beforethe end of this year.

Dan FarthingPolicy and Communications

Manager

Ideas at the Scottish Road Shows

Several members havebeen in touch about whatmight happen to theirSkipton Fund payments ifScotland votes to becomean independent country.We took their concerns tothe Scottish Minister forHealth and Wellbeing, AlexNeil MSP. In a letter sent toRichard Lyle MSP the Ministermade his position clear.

“I can assure you that thesepayments would continuein an independentScotland, whether this isadministered through theSkipton Fund or a newbody.”

Dan FarthingPolicy and

Communications Manager

Contaminated Blood Payments in anIndependent Scotland

The Aberdeen Road Show

Image © Scottish Parliamentary Corporate Body – 2013.Licensed under the Open Scottish Parliament Licence v1.0.

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Local GroupsTayside Group Go Blood Red

Tayside children and parentswent “blood red” at JumpingJoey’s soft play centre inArbroath in April. Childrenbetween one and nine got achance to hang out together. Itwas a great opportunity for allthe mums and one gran tospend time with June, ourwonderful HaemophiliaSpecialist Nurse. We had agood chat about all thingsHaemophilia and, of course,caught up on all the gossip too!

As the weather had been soawful, it seemed safest to opt fora soft play centre. However,when we met at Jumping Joey’son the day the sun was shining!As it turned out this was goodnews for us as it meant that theplay centre was nice and quiet.

Anyone who has a child with ableeding disorder canremember the early daysfollowing diagnosis, and all theaccompanying fears andquestions. Personally, that waseight years ago. One of thebest things I did was attend asummer picnic organised byJune with my then-two-month-old son. What a relief it was forme to see older boys climbingand running and doing “normal”things. I hope that this eventwas similarly helpful to othermums, and we plan to do itagain in the summer holidays.The children certainly had agreat time. It wasn’t just theirt-shirts that were red at the endof the day, their cheeks weretoo!

Moreen MilneSecretary of Tayside Group

Local Groups

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Local Groups and their activitiesare the vital link between TheHaemophilia Society and itsmembers. I have so far beenlucky enough to visit The Bristoland South West Group, TaysideGroup, and North West Group,and I hope to visit the Lincolnand Grampian Groups verysoon. I would like to meet all ofthe Groups and ensure that weare doing all that we can tosupport everyone working intheir local area, helping theirbleeding disorder community.

As well as this, we are helpingmembers start new Groups inCambridge, Newcastle andSheffield. These Groups havebeen created by people in thearea who are affected bybleeding disorders and want tobuild support networks for eachother as well as help the Charityto continue our work. We arenow also affiliated with a longstanding independent LocalGroup in Jersey. We are veryexcited by this and hope to beable to support all these Groupswith their activities.

In May 2013 we held our firstLocal Groups Forum in recent

years, in Birmingham. The daygave everyone a chance tocome together so that we couldunderstand how to help eachother. It was an overwhelmingsuccess with fantastic ideasbeing shared such as how tokeep you in touch with who thecontact is at your Local Groupand how we can help theGroups advertise their events forall of you to attend. The daywas rounded off with agorgeous Celebratory AfternoonTea with Prosecco, the perfectway for us to say ‘thank you’ forall of the Groups' hard work. Weare very excited about what thefuture holds for membersengaging with others, locally.

If anyone is interested in being apart of these Groups, or wouldlike to attend the events theyput on, please do let me know.Alternatively, if you would beinterested in starting a Group inyour area, get in touch on 0207831 1020 [email protected] as wewould be keen to support youwith this.


Reaching out to Local Groups

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Your News

Our son, Charlie, is five yearsold and suffers from severeHaemophilia B. Since birth, hehas also been profoundly deafin both ears, and he wasrecently diagnosed with Autism.Charlie had two cochleaimplants inserted at GreatOrmond Street Hospital (GOSH)when he was younger.Unfortunately, both had to beremoved because bleedscaused infections. Now herelies on basic signs and thePicture ExchangeCommunication System (PECS).

Like most children with Autismhe has no sense of danger, andit is a constant battle to keephim safe. Charlie does notunderstand that he hasHaemophilia. If given thechance he would run straightinto a road, or fall from anyheight that he could reach. It islucky that his third Port-a-Cathworks well!

On the plus side, Charlie goesto a wonderful special needs

school. He works one-to-one with a lady called Di,who acts as his eyes and

ears. Charlie is veryaffectionate, with abeautiful cheekysmile and a thirst forlife. He has energyin abundance and

is idolised by his14-month-old sister,Chloe.

Charlie was apremature baby. He spentthree months in our localneonatal unit, and has sincespent another 19 weeks as anin-patient. He has endured 11operations. Despite havingbeen through so much, he stillhas such a positive outlook onlife. His attitude is inspiring,and we are so incrediblyproud of him!

We wanted to write this articlefor The Haemophilia Societyto find out if there are otherfamilies in a similar situation.We live in east Yorkshire, andhave never met another childwith similar complex needs. Itwould be lovely to talk withothers who have experiencedsituations where their child’sbleeding disorder treatmentwas complicated by othermedical conditions.

Katrina and Mark HarrisonMembers

If you would like to be put intouch with Katrina and Markthen please contact ChrisJames at The HaemophiliaSociety on 020 7831 1020 [email protected]

Introducing Charlie

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Your NewsJoshua and KayI only truly realised thatHaemophilia can be a life-threatening condition in 2012.

My six year old son Joshua hadbeen unwell and was admittedto hospital for emergencysurgery to drain his hip andrelieve the tremendous amountof pain he was in. Even after theoperation Joshua wasbecoming sleepier and lessresponsive. I was told that hehad a Staphylococcus infectionin his bloodstream that hadprobably started in his Port-a-Cath. It turned out that eachtime his Dad or I had beenaccessing his port for the pasttwo days we had been pushingthe infection into hisbloodstream without knowing it!

He lost consciousness andbecame unresponsive and theroom filled with doctors andnurses, slapping his hands andfeet to get veins up, squeezingfluid bags through him to bringhim round. Monitors werebeeping and flashingeverywhere. During all this hisDad and I were left wonderingwhat was going on. All we couldsee was a flurry of doctorsworking on Joshua and I was lefttotally helpless knowing that Icouldn't do anything to help him.

All this had come as a big shockto me and I was questioningmyself. How could I have missed

this? Had I been sterile when Ihad done his treatments? Whyhadn't I brought him in sooner?Lots of questions that no-onecould give me answers to.

As Joshua became worse theplan became to take out theport and clear Joshua of all theinfection before putting in a newone. It was then things wentterribly wrong! Joshua went intoseptic shock. His body wasshutting down as he could nolonger deal with the infection.They took him to theatreimmediately. The new plan wasto ventilate him and put him intoa medical coma so the Portcould be removed.

It was clear Joshua was criticallyill at this point and we asked thequestion that every parenthopes they never have to ask,

“Is there a chance he could die?”The response was “we can'tanswer that.” As he wasprepped for theatre and ledaway I wondered if this was thelast chance I was ever going tosee him. I barely recognised him.He didn't look like the lively,happy little boy I knew. I strokedhis cheek and hair and kissed hislips willing him to hang on forMum.

The doctors and surgeonsmanaged to remove the Port;however, Joshua still neededimmediate intensive care and

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Your Newswould be airlifted to Edinburghby a specialist team. Therewere lots of scares to come; thetrip to Edinburgh itself was veryworrying as we didn’t know if hehad the strength for the journey.

During the nine days inEdinburgh I had so muchsupport from family, friends andstaff. It was difficult being faraway from your support networkand also my five year olddaughter, Lauren; it was veryhard. Joshua’s class at schoolwrote him stories and drew himpictures which I read to him asthey had been told that Joshuawas very poorly in hospital andthey wanted to do somethingfor him. It was lovely to read the

stories and they were reallypositive. They hoped he wouldget better soon so he could soback to school and play again. Icouldn't see it ever happeningat some points. Joshua was on aventilator for a week before hewas ready to be taken off it andbreathe on his own again for thefirst time. Even then he neededmore surgery and scans to dealwith what seemed like endlesscomplications.

I can't begin to tell you howoverjoyed I was seeing him inbed with the tubes out of hismouth, his eyes open and awee smile. He was upset whenhe saw but I gave him a big hugand his voice started to comeback watching a Mr Bean DVD.His laugh was such a greatsound to hear. We stayed inEdinburgh for another few daysand once they were happy hewas stable, we were transferredback to Aberdeen byambulance. It was fantastic tosee Joshua home in his own bed,happy with his sister and in hisown surroundings again whenseven weeks earlier it didn'tseem he would ever be homeagain.

Kay MutchMember

In the next edition of HQ youcan read more about Joshua’srecovery and his amazingholiday of a lifetime.

Careers

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A wider choiceUntil relatively recently, bleeds andlong periods in hospital have meantthere have been limited options forpeople with bleeding disorderswhen picking a career. Fortunately,modern treatment means thatyoung people with bleedingdisorders have more choice thanever before.

When we asked our members abouttheir careers we heard f peopleworking as everything from Roadiesor Supermarket Managers toIntensive Care Nurses. Few careersseem to be excluded. Somepeople have changed careers astheir work was too physical andcausing bleeds. For example oneperson changed from being aCameraman to a Driving Instructor.Others felt that having an active jobhelped keep them mobile. Joiningthe armed forces seems to be themost difficult career choice, so weasked the Ministry of Defence whattheir rules are. They told us that

“there are many conditions whichcould cause significant problems forindividuals if they were to bedeployed on military operations,despite the fact that they mightcope very well under normalpeace-time conditions. Despite arecent review the advice regardinginherited blood disorders is thatpeople “with such disorders are unfitfor military selection.” Otherrestricted careers include the FireService, front-line Prison Service,Police and Airline Pilots. Beyondthese careers, however, prophylaxishas opened a lot of doors that werepreviously closed. Bleedingdisorders no longer prevent peoplefrom having fulfilling careers andlives.

Tips

� Consider how physicallydemanding your chosen careeris. Will it involve activity doinganything which has previouslycaused a bleed?

� Where would you work? Is itconvenient for trips to theHaemophilia Centre if you needto visit regularly?

� How flexible is your potentialemployer? Some largerorganisations can be moreflexible. It’s against the law foremployers to discriminateagainst you because of adisability. An employer has tomake “reasonable adjustments”to avoid you being put at adisadvantage.

If you have an unusual orunexpected career we would like tohear from you. Please contactClaire Treguer on 020 7831 1020 oremail her [email protected]. Pleasealso contact us if you feel you arebeing unreasonably excluded froma job you could safely do, and wecan discuss if there is something wecan do to help.

Claire TreguerChildren and Families Officer

Your News

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I was born in 1992 and wasdiagnosed with moderate/mildHaemophilia A. I am currently inmy 3rd year at universitystudying an Architecture andPlanning Degree.

When I moved away from homeI registered with my localHaemophilia Centre, as well asmy own Centre. I still enjoygoing to the gym and think this isreally important for anyone withHaemophilia to keep active. If Iwere less active I would havemore bleeds. The only thingHaemophilia has prevented mefrom doing is playing contactsports. If I go away on holiday Ialways take factor with me andnever have any problems at theairport provided I take a letterfrom the Haemophilia Centre. Iam not on prophylaxis but self-infuse on demand after trauma.

I think that it is really important tolead an active life. Although Icouldn’t play rugby I continuedto play football at school. Ienjoyed swimming and playedbadminton three times a weekat my local club and won manycompetitions. Haemophiliadidn’t cause me any problemsbut I remember I wouldoccasionally have a bleed intomy calf muscle if I didn’t warmup properly or if I jumped on mybike and started riding furiously

for the first time in a few months!When I was younger I would feela problem starting with a bleedbut used to ignore it and thinkthat it would go away.Inevitably it didn’t and Iwouldn’t tell my parents until thenext day. Usually after twotreatments of factor it would befine. Had I realised then that ifI’d recognised when a bleedwas starting, I could have hadtreatment and stopped thebleed quicker, it would havemade things a bit easier. I thinkmy childhood would have beenmore difficult withoutphysiotherapy as I wouldn'thave known when to startexercising again and I wouldhave had more problems withrecovery and muscle wastage.

Joseph KellyMember

This is a photograph of me whenI was in Amsterdamlast year,staying on ahouse boatwith friends.

Introducing JosephLife with Moderate/Mild Haemophilia

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Leeds Haemophilia Centre Teenage EventIn September, the Leeds Haemophilia Team took advantage of a

“Golden Summer of Sport” to put on a local event for young menwith Severe Haemophilia A, where they could get some exerciseand advice and have some fun. The all-day, parent-free event tookplace at the state-of-the-art Leeds City Council facilities at the JohnCharles Centre for Sport.

Feedback from the day was very positive, and there is a plan to runthe event again in the future.

Thuvia FlanneryLeeds Comprehensive Care Centre

I was one of the six boys whoattended the event. We startedoff in the gym, where we weregiven a full induction, thenallowed to go on a few of themachines. This was useful as welearned a few new exercisesthat worked different muscles.Then we went to the indoortennis courts and playeddoubles for an hour. The coachgave us regular tips, speaking toeach of us individually abouthow to improve our swing. Wethen had lunch and chattedabout Haemophilia and how itaffects our bodies. Jack Bridge,the Paralympic swimmer, whocame fourth in breaststroke,

gave a talk about his life andwhat it’s like to be aParalympian. We also got tochat to the consultants anddoctors about advances infactor administration.

I think we all enjoyed the day. Itshowed us how we can still takepart in sport, even with ourblood condition. It was alsoreally good to have Jack there,as it showed us that nothingcould stop us competing for ourcountry. All of the coaches andsupervisors were great, andeveryone who came had a goat something.

Thomas ChildMember

Thomas Child Reports

Thanks to everyone at the Leeds Comprehensive Care Centre forputting on such a great event, especially Thuvia Flannery, Ann South,Dr Lishel Horn, Dr Michael Richards, Angela Westoby and KatieMcGoohan.

www.youngbloods.org.uk

Congratulations to Laura Wolstenholme who wonour writing competition. She also drew thisamazing picture!

We have printed Laura’s entire article and wehope you enjoy reading it as much as we did. Doyou think the same way as she does about yourbleeding disorder? Laura has recently turned 14,so we hope she had a very happy birthday.

Competition Winner!“Close the Gap”

Do you think that having a bleeding disorder stops you fromdoing fun, adventurous and enjoyable activities? Well it doesn’t!

I’m Lauren and I have a bleeding disorder too! Mine is calledHaemophilia. I have moderate Haemophilia (Factor VII).Although I have Haemophilia it doesn’t stop me from doing thestuff I’ve always wanted to.

Earlier this year I got to go to a place half way around theworld; FLORIDA. I had always wanted to go there. Every yearmy auntie, uncle and cousin went to Florida and they always cameback telling me how fun it was. Finally, I got to see for myself.

It was amazing! I couldn’t believe that I got to go and especiallyfor my birthday! On my birthday I got to eat in the Disneycastle, go to all the Disney parks and overcome my fear of bigupside down roller coasters. I did it and went on the hulk ride!

At first when I knew I was going to go to Florida I was reallyexcited but really nervous and worried. I didn’t know where anyHaemophilia resources were but I know I was going to be okaybecause I was with my three aunties, uncle and my cousin whoare all aware of my Haemophilia.

The other amazing things I have done even though I haveHaemophilia are horse riding, dancing and going to Doly-Moch inyear six.

Laura doesn’t lether Haemophiliahold her back



I regularly attend dance on Wednesday and Thursday. OnWednesday I dance for 1 hour and 35 minutes and on Thursday Idance for 45 minutes. I do four different types of dance;musical theatre, street jazz, tap and ballet. I like all the typesof dance and I cannot pick a favourite.

Also in 2010 for my birthday I got to go to a horse riding fun day.I was nervous about this because I saw an older girl than me falloff her horse. She didn’t hurt herself but if I fell I probablywould have. We did lots of games and we went through theforest. At the end of the day they gave out certificates androsettes to the people that tried the hardest, listened andparticipated. I won a rosette and a certificate.

Three years ago, in year six, I went to Doly-Moch with myprimary school. It was so fun! We went kayaking, beachscrambling, mining and rock climbing.

When we went kayaking we played lots of games. There was onegame called head, shoulders, knees and jump. The whole point ofthe game was to sing the nursery rhyme normally until you got to

“and toes” when you jump whilst in your kayak. We all did it butthree or four people fell in the water. My kayak wobbled but Imanaged to balance it in the end.

We also went mining. At first it was a bit scary because it wasreally dark and the mine had little bits where it had been filled inwith water miles underground and we had to dodge them. It alsohad bats in it! Although I was scared by some of the activitieswe had to do I really enjoyed going to Doly-Moch.

So although I have Haemophilia it doesn’t stop me from doing allthe fun things I have done and still to come.

By Laura Wolstenholme


Having your baby or young childdiagnosed with a bleedingdisorder may leave you feelingoverwhelmed and worried abouttheir care and future health.Some parents may be preparedfor the diagnosis because it runsin the family. For others thediagnosis comes with disbeliefand a lot of concern as there isno family history of bleedingdisorders.

In both cases parents can feelisolated and be in need ofinformation and support. As partof a programme of work tosupport new families, TheHaemophilia Society decided toorganise a Newly DiagnosedFamily Weekend. If you attendyou will gain the knowledge andskills needed to help your childas they grow up. You will alsogain confidence and have accessto support when managing theimpact of a bleeding disorder onyour family.

The weekend will be held at theMacdonald Berystede Hotel &Spa in Ascot from Friday 27th

September to Sunday 29th

September 2013. There areplaces for 15 families withchildren aged from 18 monthsto 5 years old. There will beHaemophilia Society staff andhealthcare professionals whospecialise in bleeding disorderscare and child development toanswer your questions.

The event is free of charge buta refundable deposit of £40 isrequired so that we canorganise the crèche.

If you are interested or wouldlike more information, pleasesend me an email [email protected] orcall me on 020 7831 1020.

Claire TreguerChildren and Families Officer

New FamiliesA weekend away for

newly diagnosedfamilies

23

Inhibitors

An inhibitor is a type of antibodythat prevents factorreplacement treatment fromworking. When an inhibitordevelops, it will attach itself totreatment such as Factor VIII orIX and stop it working. Thismakes bleeding more difficult totreat.

Of people with Haemophilia A,30% of "severes" will developinhibitors and 9% of "moderates"and "milds". However, only 3% ofpeople who have HaemophiliaB will develop an inhibitors.

Known risk factors involved inthe development of inhibitorsinclude: severity of bleedingdisorder; ethnicity; a familyhistory of inhibitors; and

“exposure date”.

Exposure date means thenumber of times that your bodyhas been exposed to factortreatment. Inhibitordevelopment typically occursbetween the 20th to 50thtreatment. That is why, whenpeople with severe Haemophiliadevelop inhibitors, the problemusually develops in childhood,while people affected by mild ormoderate Haemophilia tend todevelop inhibitors later in life.For example, if a personaffected by mild Haemophiliawas treated once a year theywould meet their exposure

dates between the ages of 20and 50.

The treatment for inhibitors isimmune tolerance therapy (ITT).ITT involves continuous exposureto factor treatment, with the aimof the body becomingaccustomed to the clottingfactor. Evidence has shown thatby flooding the system withFactor VIII or IX, the body stopsrejecting it, hence the term

“breaking the inhibitor”. TheUKHCDO recommends thatchildren with inhibitorscommence immune tolerancetherapy as early as possible, for12 to 36 months or longerwithout interruption.

Kate KhairHaemophilia Specialist Nurse

and Trustee ofThe Haemophilia Society

What is an inhibitor?

If you or your family areaffected by an inhibitor thenThe Inhibitor Group is there foryou.

Please contact Georgie on020 7831 1020 [email protected] more details.

Benefits

24

New information about Disability LivingAllowance (DLA) for children on our website

Benefits advice through the CaxtonFoundationA reminder that if you have ever received a payment from theSkipton Fund you can be referred for help with benefits mattersthrough the Caxton Foundation. Many members have receivedvaluable help with the migration from Incapacity Benefit (IB) toEmployment and Support Allowance (ESA) as well as other benefitissues.

Remember:

· You can still get help from the Caxton Foundation even if youhave “cleared” your Hepatitis C. You need only to havereceived a Skipton Fund payment in the past.

· It is worth registering with the Caxton Foundation now so thatyou can get help without delay when you need it.

· The Caxton Foundation also makes financial assistancegrants to individuals.

Contact the Caxton Foundation:020 7808 1175www.caxtonfoundation.org.uk

We have now added two morepages to the benefits section ofour website. The first new pageoffers guidance on assessing if adecision is a “good decision”,how to ask for the decision tobe looked at again, and whatyou can do to help yourchances of getting a betterdecision. If you do not haveaccess to the Internet then

please telephone us forinformation.

The second new page offersguidance on how to appealagainst a decision that you arestill unhappy with.To read the new pages clickthrough from the benefits buttonon the Society’s websitehomepage.

Benefits

25

Personal Independence Payment (PIP)There has been a lot of publicityabout the replacement ofDisability Living Allowance (DLA)for adults with the PersonalIndependence Payment (PIP),which started in April this year.However, most people will notbe re-assessed until at leastOctober 2015.

Adults with an indefinite or lifeaward of DLA:

· Will not begin the re-assessment process untilat least October 2015. Insome cases it may beOctober 2017 before re-assessment begins.

· If they have had their65th birthday on orbefore 8th April 2013then their DLA willcontinue. They shouldnot be re-assessed forPIP.

· If their 65th birthday fallsafter 8th April 2013, theywill be re-assessed for PIP.The re-assessmentprocess will start soonafter October 2015 butnot before.

Adults with a time-limited DLAaward ending on or before 24February 2014 can make a

renewal claim for DLA. If the DLAis awarded they will be re-assessed for PIP before May2018.

Adults with a time-limited DLAaward ending after 24 February2014 will not be able to make arenewal claim for DLA. Theymust apply for PIP instead. PIPforms will be sent out somemonths before the end of thecurrent award.

Children approaching their 16thbirthday who currently get DLAwill make a renewal claim forDLA if the forms are sent outbefore 7th October 2013. If DLAis awarded, they will be re-assessed for PIP sometimebefore May 2018. After 7thOctober 2013, this group willonly be able to apply for PIP.

No more new claims for DLA foran adult (aged 16 or over) canbe made after 10 June 2013. Aclaim for PIP can be madeinstead.

Nigel Pegram, our BenefitsInformation Worker is usuallyavailable on the telephone onWednesday and Friday eachweek (10 am to 3 pm). His directline number is 020 7269 0686 andhe will return messages within aweek. Or [email protected].

Nigel PegramBenefits Information Worker

vCJD

26

Has vCJD “at risk” status affectedyour care?

In 2004, many people withbleeding disorders were toldthey were “at risk for publichealth purposes” in relation tovariant Creutzfeldt–Jakob(vCJD) as the result of historicexposure to UK-sourced bloodproducts. At the time, patientswere assured that there wouldbe no reduction in the quality oftheir care. We have monitoredthis closely and raised anyissues with the CJD IncidentsPanel within the HealthProtection Agency.

Current statistical analysisindicates that vCJD infectionspeaked in the year 2000. Therehave been no deaths in the UKfrom vCJD since 2011, andnobody is currently diagnosedas having vCJD. The CJDIncidents Panel was dissolved inMarch 2013, and responsibilityfor investigating, assessing andmanaging CJD or vCJDincidents (and, whereappropriate, notifying patients)now rests with local trusts, healthboards and health protectionteams. This brings vCJD into linewith most other hospitalinfection risks. Despite thesedevelopments, we must ensurethat any problems caused by

the vCJD “atrisk” status areraised at anational level. If your “at risk”status ever affects your care inany way, then we want to knowabout it. In the past we haveheard of a variety of problems,ranging from always being seenlast at a particular clinic throughto procedures being delayedbecause using an endoscopeon a “high risk” patient wouldmean it could never be reused.The Society and others havebeen pressing the Departmentof Health to change theprocedures for use ofendoscopes and otherinstruments on high-risk patients.This has now happened so thatafter “high risk” use, endoscopesand other instruments can besterilised and reused; we awaitimminent publication of thedetails of this.

You can email Chris James inconfidence [email protected] or callhim 020 7831 1020 to let us knowabout any issues or to find outmore about the “at risk” status.

Dan FarthingPolicy and Communications

Manager

Please contact us if you have hadproblems with this so we can raise issueswith the NHS.

Parliament

27

Health Minister meets the APPG onHaemophilia and Contaminated Blood

On World Haemophilia Day the firstmeeting of the All PartyParliamentary Group onHaemophilia and ContaminatedBlood of 2013 was held in theHouses of Parliament.

A packed room of parliamentariansand constituents spent nearly anhour and a half questioning theMinister responsible for blood policy,Anna Soubry MP, on a wide-rangeof issues relating to contaminatedblood products. The Minister hearda number of heart-rendingpersonal stories of the impact onthose affected and she was told byMPs that they hear these stories ona regular basis in theirconstituencies. She also heard ofthe frustration and anger thatpeople feel in dealing with thecurrent systems. The Ministerconfirmed she had spoken with thevarious funds to make clear it wasnot acceptable and changes willbe happening. She had majorconcerns over; the set-up of somefunds, the fact there were so manyand a bureaucracy which madepeople feel that they are beggingand beholden. She couldn’t makepromises but would look at it andrecognised that some just wanteda lump sum and to get on with theirlives while for others their conditionmight need a differentarrangement. The Minister was leftin no doubt of the depth of feeling

from both constituents and theirMPs.

Jason McCartney MP and DianaJohnson MP, the Co-Chairs of theAPPG, thanked everyone andespecially the Minister for attending,and reiterated the support for thecommunity above all. Jasonconfirmed questions provided tothe Minister would be followed upon and he finished the meeting bysaying that improving the financialsystem for victims of thecontaminated blood disasterwould be his top priority if anymoney could be found. He stressedthat we were on the same side andthe attendance at the meetingproved what support there wasfrom parliamentarians of all sides. Afull copy of the minute is availableon www.haemophilia.org.uk orfrom me at The HaemophiliaSociety.

Future meetings of the APPG willlook at financial systems for thosewith affected by contaminatedNHS blood products and thebroader benefits system, treatmentand care issues in the new NHS andthe Penrose Inquiry. Please keep aneye on The Haemophilia Society’swebsite for more details on thesemeetings.

Chris JamesChief Executive Officer

The Skipton Fund

28

Second Stage Payment secured withoutMedical RecordsMy brother, Barry, had severeHaemophilia and passed awayin 1993 having receivedcontaminated Factor VIIIconcentrates. In 2011, mymother was 95 and lived on herown. It fell to me to look afterher affairs. On one of my weeklyvisits, I came across a letter fromthe Skipton Fund. The letterinvited us to make a first stageapplication for an ex-gratiapayment. We were asked toprovide evidence that, at thetime of his death, he hadcontracted Hepatitis C. Itexplained that families werenow entitled to claim on behalfof those who had passed awayprior to 2003. I registered mymother as a claimant andcarried out the paperwork andinvestigations.

The Skipton Fund initially refusedthe application on the groundsthat Barry’s medical records hadbeen destroyed. However, aftera simple process, ourapplication was approved bythe Appeal Panel. The vastmajority of people withHaemophilia contractedHepatitis C.

After my mother sadly passedaway, we were invited to makea further application. I set out toshow that it was more likely thannot that Barry had developedcirrhosis. Again, the initial

application was refused andreferred to the Appeal Panel.This case was rather morecomplicated. Only a minority(25%) of those with Hepatitis Cgo on to develop cirrhosis.

The Appeal Panel sat three timesin 2012. In spite ofoverwhelming evidence inBarry's favour, the Appeal Paneldecided that they needed extraresearch. I believe that the factsof Barry's own situation werehighly relevant, especially thelength of time that he wasexposed to contaminatedblood products. On 7 February2013, the Appeal Panel finallyapproved the application. It isvitally important for the Panel tocome to the truth only by arigorous study of the facts. Ihope that my ownperseverance helped them tocome to the right decision.

Roy Smith Member

If you are in a similar situation toRoy and would like our help inmaking your application, pleasecall Georgie Robinson on 0207831 1020 or email her [email protected].

Rob

Barry&&

Book Review

29

What Are Yer? Bleeder! By Derek HaughtonThis book is a touching,disarmingly honest account of alife with severe Haemophilia Band is in parts both sad and withequal measure greatly amusing.Derek was born in 1944 and thebook follows his childhood to 18years of age through times inhospital wards, special schoolsand an open-air residentialschool. Here fresh air was theorder of the day and (quiteunbelievably in these moreenlightened times) where snowcould blow into the children’sdormitories. The schools werebuilt on the concept that fresh air,good ventilation and exposure tothe outside contributed toimproved health.

There are parts of the book thatmake for very uncomfortablereading, his time in traction andon callipers but particularly thehorrendous episode with the staffat one hospital where derisionand mocking of the children was

“the norm”. One day Derek hadan innocent everyday accidentand developed an elbow bleedand the staff started chantingand would get the whole wardjoining in “this little boy falls out ofbed and hurts himself so has tohave cot sides like a baby”. Thatthis bleeding episode was treatedas a self-inflicted nuisance servesas a reminder of the staff’signorance and cruelty. This wasfollowed by the excruciatingly

painful treatment of an elbowbleed with a heavy plaster cast.Anyone who’s had a bleed willappreciate the idea of the paincaused by even bed-covers on ableeding joint, never mind theagony caused by an inflexibleplaster cast trying to suppress theswelling, which was being used asan experimental procedure. (Areyou wincing like I am?). Then thefurther ritual humiliation dishedout as chanting and mocking asthe child moans in agony.

Derek comes across as a cheeky,quick-witted and intelligent boy,who is determined to use hissense of humour to get revengeon those who mocked him. Thisyoung man’s strong-will comesacross and I find his contempt forsome of the fools he encounteredalong the path of his youth quitehilarious. This account is notwritten in a self-pitying way; thereis gritty and wily determination ofthis little “bleeder” in every turn ofthe page. I am astounded at thecapacity with which he enduredadversity and makes you laughout loud on his journey with abagful of boyhood japes and arefreshing non-conformist attitude.It makes for very entertainingreading. I hope there will be afollow-up on Derek’s adult years!

Helen CampbellMember

30

Don’t let having a bleedingdisorder stop you travelling. With abit of planning you can still have agood time and not come home byair ambulance! The first big issue istreatment. If you travel to a less-developed country, their medicalcare won’t be as good, so you willneed to take your own treatmentwith you.

Top Tip 1: Talk to your HaemophiliaCentre. If you’re planning to travelfor more than a month, it can behard to get enough supplied. Theyhave to be careful about givingyou so much treatment. They canalso give you a letter explainingwhat you are carrying. I’ve beenstopped in a lot of differentcountries from Colombia to China.When you have vials filled withwhite powder, it is best to have theright paperwork!

Top Tip 2: Inform the hospitals inyour destination country that youare coming. This helps them helpyou if anything goes wrong. Youcan find most of that informationon the World Federation ofHemophilia website www.wfh.org.

Top Tip 3: Travel with insurance.There is a list of companies thatoffer cover on The HaemophiliaSociety websitewww.haemophilia.org.uk. If you’rehonest about your condition, youshould be able to find cover.

My last trip was to India and Nepal.I saw the Himalayas and a lot of

north India and had an amazingtime. So what are you waiting for?Get packing and don’t forget yourfactor!

Rob HodgkinsMember and Volunteer

We recommend taking sufficienttreatment for the whole of the periodyou are away. If going away for a longtime (e.g. backpacking), your Centremay be able to post factor out to you.Also, you should get a letter from yourdoctor at the Haemophilia Centreconfirming that you are fit to travel,explaining the nature of the treatmentyou are carrying and why this shouldnot be stored in the hold of the aircraftif you are travelling by air. In view of thecurrent security situation it would behelpful to get prior agreement to allowyou to carry the product as handluggage from the airport and airlinebefore you travel. If treatment iscarried in the hold it may get lost. Also,although we have been assured by theHead of the Aviation Health Unit thatfor the majority of airlines thetemperature in the hold never fallsbelow 4 degrees centigrade, meaningyour factor should remain useable, thishas yet to be confirmed for budgetairlines. You can also find moreinformation on the Irish HaemophiliaSociety website www.haemophilia.ie;we suggest searching for “travel card”.

Rob’s Top Travel Tips

Travel

31

FundraisingHow to support YOUR Haemophilia Charity

People do all sorts of wonderfulthings to raise money for worthycauses that mean something tothem. However, how manypeople have thought ofsupporting The HaemophiliaSociety in the UK? We are theonly charity for everyone with ableeding disorder. We workhard to raise vital funds to keepour services running for thosethat need it the most: you!

If you were thinking of shaking abucket, holding a cake sale,organising a coffee morning oreven something moreadventurous like running amarathon or skydiving, then whynot make us your chosencharity? Fundraising is easy andwe are here to give you thesupport you need. We cansend you t-shirts, sponsorshipforms and even publicise yourevent on Facebook and Twitter.We will help as much as we can.

It is not just about the moneythough. Every time you explainwhat you are doing and why,you will be spreading the wordabout bleeding disorders to thegeneral public. When peopleunderstand more about

bleeding disorders, they aremuch more willing to supportthe only UK charity for thoseaffected. The money you raisenot only helps us keep going butmakes sure we can providebetter services for thecommunity we serve.

So, when “helping a worthycause” is next on your list ofthings to do, why not thinkabout choosing TheHaemophilia Society. Yourefforts would mean so much tothe people we are helpingevery day and allow us tocontinue the good work we do.

For more information contactNina or Lorna on 0207 831 [email protected].


32

FundraisingGreg takes on Mount KilimanjaroMy son, Calum, hasHaemophilia. There is nodenying that he has gonethrough quite a lot at a youngage. However, the ordealswere made easier knowing thatThe Haemophilia Society wasthere to support us. That is why Idecided to do something tochallenge myself, and say thankyou by giving something back.Bring on Mount Kilimanjaro!

I had to raise £3,600 before Icould book my place. I started

by selling some old Star Warstoys. I asked friends and familyfor sponsorship and held twofundraising events. A friend andI had over 1,400 eggs thrown atus and yes, it hurt! I knew thatbeing organised was the key tosuccess. Fundraising, keeping fit,and juggling work and family lifewas hard, but it was worth it.Despite Royal Mail losing mypassport and visa just 11 daysbefore leaving, I got to thestarting line.

Fundraising

33

The first day was relatively easy.After that, the walks were verysteep and I really struggled attimes. The altitude made myhead pound, and I struggled forbreath. I was often cold and wet.However, the team kept themorale alive and smiles on ourfaces.

On day five we started thesteep climb to the summit. It feltlike I was walking with myshoelaces tied together forseven hours. When I finally sawStella Point I cried withhappiness. Then one of the tourguides told me we weren’tfinished yet. Uhuru Peak was stillto come! The 40 degree slope,along with the altitude, meant Ihad to take four massive breathsfor each step. At this point Ireally had to remember who Iwas doing this for, and tell myselfto stop being a wimp. I knewthat Calum had been through1,000 times worse. He was whatit was all about. Compared to allthe needles, operations, stress

and upset he has gone throughthis was nothing. I had to pullmyself together.

After 45 long and hard minutes, Ifinally made it. The sense ofachievement was indescribable.I have never felt so happy, andneeded to be so sick, all at thesame time! On the way down Ipaused for a moment to take itall in. I thought about howproud my wife and childrenwould be. I was pleased that Ihadn’t let anyone down whohad supported me, especiallyThe Haemophilia Society. Theyhave done so much for my boy.

You experience many highs andlows on these treks, but thesense of achievement is trulyincredible. So here I am, backhome with my family, beingtreated like a hero, and it feelsgood. We all know who the realhero is though and that’s my

“dudy woo”, Calum.

Greg SmithMember

The Haemophilia Society would like to say a heartfelt thank you to Greg, hisfamily and all his supporters for undertaking such a challenge and helping usraise the vital funds needed to continue supporting the bleeding disordercommunity. It means so much to us. Thank you. You can still support Gregwith his fundraising by going to www.justgiving.com/Greg-smith4.Would you like to get involved in a trek, experience sights you would nevernormally see and raise money for the Charity? Why not come on our summer2014 trek in Iceland? Get in touch with Nina or Lorna on 0207 269 0687 [email protected]

Why don’t you join a trek?

Fundraising

34

Tim’s Marathon Effort13 years ago, having won aballot place for my first LondonMarathon, I decided to raisemoney for The HaemophiliaSociety. Subsequent to thisstarting point in getting to knowthe Charity, I eventually joinedthe Board of Trustees as aTrustee and Honorary Treasurer.

I have seen how challengingfundraising has been forcharities in recent years, towhich The Haemophilia Societyhas not been immune. Everypenny raised really does make ahuge difference to how muchwe can do to support thebleeding disorder community.So when I found out that TheHaemophilia Society had finallybeen awarded someguaranteed places, it seemedonly fitting to dust off my trainersand to run the Virgin LondonMarathon again.

After what can only bedescribed as horrendous trainingconditions (snow, rain and cold),the marathon itself was verysunny and warm, which carriedits own challenges and I saw alot of dehydrated fellowcompetitors on my circuit. Thesun brought out the crowds andit was like running along amassive street party with anamazing atmosphere ofcheering, music and dance.However all good things have tocome to an end and the so

called “wall” duly arrived at 22miles, but I managed to strugglethrough to finish in a personalbest time of 4 hours and 20minutes. I’d like to take thisopportunity to thank all myfamily and friends for theirsupport on the day and moreimportantly helping me raiseover £4,000. If you would like tosponsor me, my Virgin MoneyGiving page is still live:uk.virginmoneygiving.com/metzgen.

Through our bonded places, wehave five entries for next year soplease contact Nina or Lorna [email protected] you’d like to take part in 2014.As painful as the final few mileswere, running the marathon isan extremely rewardingexperience and I stronglyrecommend it to anyone elselooking to push themselves for agood cause, and who knows Imight just try it again next year!

Tim MetzgenHonorary Treasurer of


We would suggest anyone witha bleeding disorder consideringan endurance event, like amarathon, should discuss it withtheir Centre.

Tim Metzgen “an extremelyrewarding experience”

Fundraising - Thank You

35

Thank You to all ouramazing marathonrunners!A huge effort this year has raisedover £24,000!Patrick Gallagher raised over£10,310Tim Metzgen raised over £4,000Alex Clark raised over £2,180Natalie Vaughan raised over £1,720Tony Frendo raised over £1,730Stuart Forknell raised over £1,500Nick Tayman raised over £1,090Tim Ransom raised over £900Jo Wildgoose raised over £600

Patrick Gallagherwith a proud supporter

NickTaymanat theGreenStart

Alex Clarkrunningwell

Tim Ransomwaves tothe crowd

Natalie Vaughanwith her medal

Jo Wildgooseon the home straight

Tony Frendo with hisfantastic supporters

Fundraising - Thank You

36

RossEldridgeRossorganised afootballtournamentand a rafflewhichbetweenthem raised£550. His littlegirl Ella(pictured) hasGlanzmanns.

CraigSleetCraig ranthe FleetHalfMarathonandraised£505!

Stuart HoundslowStuart took on the GRIM Challenge inDecember 2012 and raised £625. Hisnephew, who has Haemophilia, was thereto congratulate him at the end (see right).

37

Fundraising - Thank YouTracy Appleyard’sTreasure HuntRaised: £480 so far; themoney is still coming in!We are a small livery yard andriding club. Steve Makin, whoprovides us with our animal feedsand helps maintain our land andyard inspired us to raise money forThe Haemophilia Society becausehe and his grandson both have

Haemophilia. We decided tohave a treasure hunt opento horse riders and walkers

to maximise the amountof people taking part.

Each participant whoarrived in fancydress received a smallgift of chocolates. Thetreasure hunt was split

into two routes eachcontaining funand interestingclues along theway which

featured things suchas finding bags of

Haribo, finding picturesand of course finding

the letters whichmade up ananagram oncompletion. Theanagram thisyear was

“Makin’ senseyet?”, thiswas chosen tomake theevent uniqueto thefamily. Therewas a hog roastalong with cakes, teaand coffee. The raffle hadfantastic prizes donated by localbusinesses and people including,meals at local restaurants, freeriding lessons as well as the usualchocolates and bottles of wines.Everyone had an enjoyable dayand we are making the event anannual feature on our calendars.We hope it will increaseawareness of Haemophilia yearon year. We have also inspiredSteve and his family who are allnow doing the London to Parisbike ride, to raise money again forthis good cause.

Tracy AppleyardMember

Thank you to Tracy and everyone whomade the day such a huge success.

38

Your letters

Dear Haemophilia Society,

May I express my very wholehearted agreement with the

tribute to Dr Mark Winter in the current edition of HQ? Dr

Mark, and his team, looked after my husband from 1983

until my husband’s death in 2004. Where else would a

consultant be found who was willing to talk a patient

through a problem, on the phone, in the small hours of a

bank holiday morning?

In some of his most difficult times my husband used to

remark that he felt better for just visiting the Kent and

Canterbury centre – the whole team were always so

bright and positive.

So, thank you, Mark and best wishes for your future.

Elizabeth M Beadle

If you have anything to say about our work, your HaemophiliaCentre or stories to share about living with a bleeding disorderthen we would be very pleased to receive a letter from you.

Please send your letters to:

The HQ Editor, The Haemophilia Society1st Floor, Petersham House, 57a Hatton GardenLondon. EC1N 8JG

Or email us on:[email protected]

39

Get in touchWhom 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 Society events!

Find out about events or get information aboutbleeding disorders:Georgie Robinson - Information & Support [email protected] help with your benefits claim:Nigel Pegram - Benefits Information WorkerWednesdays & Fridays. 10am - [email protected] 020 7269 0686For the latest about our children and family holidays:Claire Treguer - Children & Families [email protected] us raise money and awareness:Nina Benscher - Head of [email protected] McKay - Fundraising [email protected] us or change you membership details:Tom Bradley - Membership & Administration [email protected] back expenses or financial matters:Rachel Goodkin - Finance & Office [email protected]

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

Unless another number is given call

020 7831 1020

© The Haemophilia Society

Opinions expressed in HQ do not necessarily reflect those of TheHaemophilia Society. We welcome non-commercial reproduction ofarticles on the understanding that acknowledgement is made of HQ as asource.

Thanks go to the following pharmaceutical companies who are providingvaluable support: Baxter Bioscience, Bayer, CSL Behring, Grifols, NovoNordisk 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 themagazine, we advise that you consult your doctor.

For all people affected by bleeding disorders

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

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

HaemophiliaSocietyUK haemosocuk

www.haemophilia.org.ukwww.youngbloods.org.uk

Freephone information and support 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 HemophiliaChair: Bernard Manson - [email protected]

HQ Summer 2013

Documents

Transcript of HQ Summer 2013