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HAEMOPHILIA SCOTLAND

Registered Charity: SCO39732

Issue 3

GIVING VOICE TO THE SCOTTISH HAEMOPHILIA COMMUNITY

Spring 2012

Holyrood reception hailed a success

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Haemophilia Scotland hosts showcase event at Scottish Parliament

nternational Rare Diseases Day on Wednesday 29th February was an appropriate occasion for Haemophilia Scotland to hold its first parliamentary reception at Holyrood. Months of planning and hard work resulted in a hugely successful evening.  Around 120 participants from across Scotland attended the event, including people with bleeding disorders, family members and Haemophilia Centre staff. Also present at the parliamentary reception were colleagues from Thomson’s solicitors, who are representing The Haemophilia Society at the Penrose Inquiry, Scottish Government officials, as well as representatives of the pharmaceutical industry, including Pfizer Ltd, without whose generous support the event could not have gone ahead. The principle aims of the event were to showcase the work of Haemophilia

Susan Warren, National Director Haemophilia Scotland, with Richard Lyle (SNP), our MSP Sponsor during our Parliamentary Reception at Holyrood on 29 February 2012

Scotland and to raise awareness among our MSPs of the issues we face in the months and years ahead. In this last regard, especially, the event proved to be very successful; with around twenty MSPs - including four Scottish Government Ministers - turning up to meet with and chat to Haemophilia Scotland members and volunteers. Event sponsor, Richard Lyle MSP, spoke of the hugely significant role that

volunteers play in taking forward the issues and concerns experienced by people affected by haemophilia and other bleeding disorders. Richard was followed by Kay Mutch, a member of the Scottish Management Committee. Kay is the mother of a young boy with severe haemophilia, and described to the audience the practical realities of the impact of living with haemophilia,

and the challenges faced by parents and families of those affected. Finally Bill Wright, Chair of the Scottish Management Committee, spoke movingly about the past issues of the Society, but also mentioned the positive prospects for the future growth of Haemophilia Scotland’s work in Scotland. Bill announced that, after a great deal of effort on the part of (Continued on page 2)


Parliamentary Reception | WFH Bid Spring 2012 Newsletter Contributors & Contact Details CHAIRMAN: Bill Wright COMMITTEE: Paul Anderson Lynn Fraser Margaret Loughray Kay Mutch Hugh MacInnes Carolyn McGimpsey George McNaughton Ann Strachan NATIONAL DIRECTOR: Susan Warren susan@haemophilia.org.uk 0131 557 5953 HAEMOPHILIA SOCIETY POLICY & COMMUNICATIONS MANAGER (based in Edinburgh office): Dan Farthing Tel: 0131 557 5953 Mobile: 07872 899 886 dan@haemophilia.org.uk NEWSLETTER EDITOR: Hugh MacInnes Tel: 01851 810262 Email: hugh@cuanard.com CONTRIBUTORS THIS ISSUE: Jane Malcolm Carolyn McGimpsey Paul Anderson Keith England Susan Warren Bill Wright Dan Farthing Mathew Lariviere Nancy Brodie Kay Mutch

Holyrood reception Society staff and volunteers in Scotland, Glasgow had progressed to the final round to bid to be host city for the bi-annual World Federation of Haemophilia conference in 2018.   The evening reception was the highlight of a weeklong presence at Holyrood by Haemophilia Scotland. In addition to the evening reception, we also hosted a staffed exhibition stand in the Member’s Lobby. Throughout the week, Susan Warren and Dan Farthing were joined by members of the Scottish Management Committee and Lawrence Lincoln, representing the younger generation. Together they took the opportunity to meet and chat with MSPs and

(Continued from page 1) Government Ministers about the work of the Society. The team felt that MSPs responses to the exhibition were hugely encouraging, with a very healthy number stopping to chat and ask questions about the work of Haemophilia Scotland and the issues faced by those living with a bleeding disorder. Overall, our first parliament event proved to be a great success. Given the response of MSPs to the event, the Scottish Management Committee is already looking towards arranging a repeat event in 2013 in what we hope will become an annual fixture in the Haemophilia Scotland calendar. by Paul Anderson

WFH 2018 World Congress Finalist THE UK HAEMOPHILIA SOCIETY has been informed that it is one of two finalists bidding to host the World Federation of Haemophilia (WFH) World Congress in 2018. If successful, it will be the first time this prestigious international event has been held in the UK. The biennial World Congress is the single largest event in the WFH calendar, where doctors, scientists, healthcare workers, those with bleeding disorders and haemophilia organisations from around the globe gather to discuss and debate the latest developments in the treatment of bleeding disorders and other key issues. If the UK bid proves to be successful, the hosting of this important international event will recognise the professionalism and hard work of the Glasgow 2018 team and offer a welcome boost to the Scottish and wider UK economy. The bid team working towards bringing the WFH 2018 Congress to Glasgow are: Kathleen Warden (Scottish Exhibition & Conference Centre); Aileen Crawford (Glasgow City Marketing Bureau); Nancy Brodie (Glasgow Royal Infirmary); Andrew Brewer (Glasgow Royal Infirmary); Susan Warren (Haemophilia Scotland); Chris James (CEO, The Haemophilia Society), who have now been joined by Bernard Manson (Chair, Board of Trustees of The Haemophilia Society) and Matt Gregory (Trustee, The Haemophilia Society). The 30th WFH World Congress is being held in Paris this summer from 8-12 July and will feature presentations, workshops, and exhibits relating to haemophilia and other bleeding disorders. The Paris meeting will also offer the UK bid team an opportunity to make a final pitch to the General Assembly for Glasgow to host the 2018 Congress. A decision on the 2018 venue is expected in mid July.

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Haemophilia Scotland Chairman’s Welcome

Talking to doctors........and talking to politicians too

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s folk who have bleeding disorders, or their parents, most of us will have more than average experience of meeting other folk that used to be called ‘doc’ or ‘nurse’ but we often now address by their first names. The nature of the dialogue has over the years changed significantly. One of the themes coming up repeatedly during the Penrose Inquiry into the infections disaster is that of what patients were told (or not) at the time they were infected with HIV and/or hepatitis C and what communications took place. Given the Inquiry is still sitting and due legal process has to be seen through, it would be invidious to comment at any length upon its strengths or weaknesses until the final report appears. That is even though we are all clearly feeling frustrated at times with the whole process. I get the strong impression that frustration extends to many of the lawyers and staff involved with the Inquiry too. I must emphasise that, as a core participant, Haemophilia Scotland has been spending thousands of hours engaging with the Inquiry process with a view to getting as much as possible from it. But getting back to the question of talking to doctors today in 2012, compared to back in the 70s and 80s, we have hopefully moved onto a situation where we are

able to ask more informed questions about problems and treatment. Clearly anxieties and frustrations remain but the first point of contact if you are worried about treatment will always have to be the haemophilia centre. Those living further away can of course phone their centre – I certainly do and am repeatedly grateful for the way my query is dealt with. Doctors and nurses are busy people but for parents of newborn children with bleeding disorders my strong advice is ask them about your concerns rather than fret. If you still have worries then contact the Haemophilia Scotland office as we might be able to help.

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group of us from Haemophilia Scotland were involved at the end of last year in a meeting with the Directors of Haemophilia Centres and their medical and nursing colleagues and we were able to share with them some developments we knew about in relation to patient support (or in some cases lack of it) and they drew our attention to some developments we weren’t aware of. See the report of

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the meeting in later pages for some of the stuff we learned about. Many folk with haemophilia won’t, however, have spent much time before talking to MSPs other than those who have campaigned relentlessly for the Inquiry into blood contamination that eventually became the Penrose Inquiry. That all changed spectacularly with our 3 day visit to the Scottish Parliament with our display stand and the high spot of the evening reception in the Garden Lobby. Everyone involved reckoned it was a great success to the extent that more than forty MSPs have signed up for a Parliamentary Motion supporting us. See elsewhere in the newsletter for further details. None of this or the other work we have been involved in would have happened without the support of the members of the new Haemophilia Scotland Committee who have now met as a full committee twice but have also been working behind the scenes on your behalf too. So a big public thank you to them for not only their commitment of time but the knowledge and expertise they bring. All the best, Bill Wright.


Haemophilia Scotland | Scottish Centres

Inaugural HS Committee meet in Stirling The newly established Haemophilia Scotland Management Committee held its first meeting at the Stirling Management Centre in October 2011. L to R: Paul Anderson; Hugh MacInnes; Margaret Loughray; Bill Wright; Carolyn McGimpsey; Susan Warren; Ann Strachan; and George McNaughton. Missing from the photo is Kay Mutch (Inset below)

Why Scottish Centres might be asking you to do a little more

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s we all know from time to time treating someone with a bleeding disorder can get relatively expensive. In Scotland, to prevent this causing budgeting problems for the Health Boards the National Services Division (NSD) manage a financial risk sharing agreement. This means that there are solid financial arrangements to pay for products behind the Scottish Haemophilia Centres. There are large variations in the average amount of treatment used in different parts of Scotland. NSD have

been asked to conduct a review to ensure that everyone is getting access to appropriate care and that the NHS is getting good value for money. To do this they need to know to what extent giving more treatment improves your quality of life. Haemophilia Centres have agreed to collect more information than in the past to help prove the benefits of treatment. To do this they will need your help. You may find that your next appointment needs to be longer than usual. Some centres also need to take halflife measurements to see how

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by Dan Farthing

long the treatment lasts in your body – this can be very different from one person to another. If this affects you then you might be asked to come in on a different day and to treat yourself at a specific time beforehand. It is hoped all this new information will not only be used to demonstrate the general effectiveness of the treatment but it will also help your centre provide you with even better care. If you have any concerns about this, please do not hesitate to raise these with your Haemophilia Centre or with us.


An American’s perspective on haemophilia Illness, Healthcare and Scotland: An American Haemophiliac’s Perceptions Haemophilia is a peculiar condition. It’s odd to think of myself as being ‘chronically ill’ when most of the time I feel ‘normal’. This is coming from a person with severe haemophilia A and inhibitors. I even have very little to no joint damage; despite always treating bleeds on-demand rather than prophylactically. Even by treating myself on-demand only I usually only have a bleed once every two to three months. Therefore, when I say that ‘most of the time I feel normal’ what I mean is that most of the time I do not feel haemophilic. My name is Matthew Lariviere. I’m twenty-six years old, male and American; I also have haemophilia. In August 2010, I moved from the United States to Scotland in order to study for my Master of Research in Social Anthropology at the University of Aberdeen. It was my first time ever in the United Kingdom and only my second time away from the United States. It was a tough choice leaving the United States, I had roots there. Most of my friends and family were living in New England. However, I did have connections overseas as well. I was dating a French woman who was also going to be living in Aberdeen at the same time as I, a coincidence as the British Council could have selected any city in Scotland or Tyneside. There was also the attraction of the universities and the programmes. Master programmes in the United Kingdom are generally only one year long whereas in the United States they are two years long. Therefore, whilst a single year is more expensive in the United Kingdom than in the United States for me (due to the

nearly extortionate rate that overseas students are charged), it would be less expensive overall for me to only have to pay for one year at a higher rate than two years at the slightly lower rate. There is also the issue of health insurance. Health insurance is a difficult and contentious issue in the United States. Debates are usually centred across the major political party lines in the politics of my nation: Democrats would prefer for there to be a single-payer healthcare system with universal access and coverage, Republicans would prefer for a multi-payer healthcare system that people can buy into directly or through employers. A single-payer system is argued to be too expensive and nearly impossible to guarantee access to all people in the United States. However, people that are chronically ill often miss work due to appointments, sickness or for other reasons. This means that if they are insured through their employer a sick person could lose the valuable insurance and has to pay directly out of their own pocket for medical expenses; this type of system punishes people that need healthcare the most, the chronically ill. Added to this is that once a person with a chronic condition loses health insurance, new insurance providers do not have to cover expenses related to any ‘pre-existing conditions’. However, there are other nations that have a single-payer healthcare system. The United Kingdom is a country that has a single-payer healthcare system, the National Health Service (NHS). Yet the NHS in Scotland is both equal and separate from the

NHS of England and Wales. Government white papers that are issued in England and Wales are often adapted by NHS working groups in Scotland though adapted to take account of the different needs of Scots based on public health research. However, NHS Scotland is faring remarkably well in contrast to NHS England and Wales. Whilst England and Wales are fighting and searching for ways to cut back on expenses and deficits of the NHS (with an increasing focus on publicprivate partnerships), within the eighteen months that I have lived within Scotland I have seen prescriptions go from the low rate of £3 each to free. Even more than the general care which I have received infrequently (due to general good health) at my GP’s surgery though, the difference in care and treatment in Scotland and the United States is most apparent with my haemophilia care. As of writing this I have lived in two Scottish cities, Aberdeen and Edinburgh and have experiences with staff at both haemophilia centres, experiences that have been largely positive. I think part of my appreciation for NHS Scotland is the access and availability of healthcare. When I left the United States I was uninsured because I had completed university but could not find a full-time job with medical insurance that would cover expenses related to haemophilia care. In Scotland, I have never had this problem. Whenever I needed factor to treat a bleed, the staff at the haemophilia centres, whether in Edinburgh or Aberdeen, always worked hard to provide me treatment and to consult

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about the bleed and how it was resolving. I am thankful for NHS Scotland and what its availability to me, a foreign national, has done for my life away from the United States. Rather than being seen primarily as a haemophiliac, I am a person who happens to have haemophilia. Haemophilia is merely a single facet of who I am. Perhaps that is part of the reason why since I have come to Scotland, in a way, I feel less haemophilic. I am not consistently worrying about whether or not my insurance will reach a lifetime cap or if my new insurance will cover expenses from a pre-existing condition. I can be a student and earn my credentials. I am a student who happens to have haemophilia, not a haemophiliac student. It makes a difference for how I identify myself and perceive the future. NHS Scotland has shown that there are different ways to provide healthcare and that people deserve to have the right to access to health interventions, particularly during periods of ill health whether due to a chronic or acute condition. If you wish to contact me about my background, work, or have any questions about my experiences with haemophilia then you may contact me at matthew. j.lariviere@gmail.com.

About the Author:

Matthew Lariviere is currently living in Edinburgh where he is studying for his Master of Public Health at the University of Edinburgh. His research in the social sciences focuses on haemophiliacs in North America and Europe.


Cross party support for Haemophilia Scotland

Farthing san Warren and Dan Su , SP M rd fo aw Cr Bill Wright, Bruce n, Parliamentary Photographer Photo: Andrew Cowa

Haemophilia attending M Scotland Committee m LtoR: Ann St SPs and representative embers at the Parliame ntary Recep MSP (Labou rachan with Rob Gibsons from Pfizer. tion with r) M . S In P th (S e N background P), Carolyn M tives from P is cG fizer, who su pported our George McNaughton sp impsey with Iain Grey ea Reception. P hoto: Dijkstraking to representa-Downie Pho tography

the n at our exhibition stand in Salmond and Susan Warre an, Parliamentary Photographer x Ale ter nis Mi t Firs t, igh Cow Bill Wr liament. Photo: Andrew Member’s Lobby of the Par Lawrence Lincoln, a young man with the condition to the Deputywith haemophilia, explains what it is like to live Presiding Officer, John Scott MS P

Bill Wright, Ru Dan Farthing. th Davidson MSP (Leader Scot tish Co Photo: Andrew Cowan, Parliamnsenervatives), Susan Warren an d tary Photograph er

hing h Liberal Democrats) with Dan Fart Willie Rennie MSP (Leader Scottis her rap tog Pho entary Photo: Andrew Cowan, Parliam

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Cross party support for Haemophilia Scotland

Team Glasgow Haemophilia Sc!otOur gratitude to staff from Glas Congress in Scotlaland and the UK Haemophiliagow Haemophilia Centre for supp nd during 2018. Society in our bid to host the WFHorting

Annabel Goldie MSP (Con) has a chat with one of the WFH Congre Andrew Brewer, Glasgow Roy ss 2018 Bid Team, al Infirmary.

Bill Wright, Chair of Haemophilia Scotland, and his famil y speak to John Swinney MSP (SNP).

Paul Anderson (Haemophila Scotland Management Committee) speaks to Diane Thomson and Debra Morgan from Pfizer Ltd.

Christine Graham MSP wi

aemoEdinburgh Herlin in m o fr ts n a lt B nt with consu r Youth Trip to ares a momrseon, a volunteer on ou. sh ) LD (S P S M ress nde Willie Renntriee, including Dr JuliaidA to host the 2018 Cong philia Cen a supporter of our b 2011, and RIGHT: The convivial atmosphere of the Parliamentary Reception allowed individuals and representatives from various organisations to meet informally and chat about some of the key issues affecting the bleeding disorders community. Among those present were: Haemophilia Scotland and Haemophilia Society members and staff; MSPs; NHS personnel from Edinburgh and Glasgow Haemophilia Centres; National Services Division; Scottish Government staff; members of our legal team on the Penrose Inquiry (Thompsons Solicitors); representatives from pharmaceutical companies and the Home Delivery Company; as well as representatives from charities, such as Rare Diseases and the Genetic Alliance.

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th Philip Dolan, West of

Scotland Local Group.

All photos by Dijkstra-Downie


REPORT: Haemophila Scotland - Centre Directors & Nurses

Scottish Haemophilia Centre Directors/Haemophilia Scotland Meeting Members of the Haemophilia Scotland Committee (SMC) and representatives from local Scottish groups recently held our annual meeting with the Scottish Haemophilia Centre Directors and nurses, where we discussed various issues on behalf of our members and were able to exchange views and information with each other. Carolyn McGimpsey reports on the meeting: OUT OF HOURS SERVICE: Children attending Edinburgh Sick Children’s now have to go to A&E instead of going straight to the ward due to hospital staffing arrangements during the evening and weekends. This should offer quicker access to more services. The doctors also recommended that patients phoned ahead before presenting at A&E to advise Haematologist you require to be seen. The A&E computer system will also flag up registered patients who arrive. HEPATITIS C TREATMENT: There was a discussion about what research into the psychological side effects and success rate of treatment in haemophilia. Patients can report side effects to treatment online at the MHRA website, though none of the patient representatives at the meeting knew about this - a link will be put on the Society website. Older Patients: Centre were asked to report on their preparations for an increase in numbers of older patients due to greater life expectancy. A working party has been set up by the UKHCDO to look at this issue. The matter will be on the agenda for the next Centre Directors meeting. HAEMTRAK: Haemtrak is a system that allows patients to record their treatment records directly on to the National Haemophilia Database, either online or using an iphone. Some centres have people already using it. NHS CUTS AND THE FUTURE OF DLA: There were reports of patients being asked to take less treatment, possibly to save money. All Directors present were adamant that this was incorrect, and if some people had been asked to reduce their treat-

ment, it would have been purely for clinical reasons. DLA plays an important role in the lives of many people with bleeding disorders, particularly on their ability to access treatment and care. DLA is going to be replaced in 2013 by Personal Individual Payments (PIPs), and at the meeting we posed the question: How can we make it easier for our patients to get this help? It was suggested that, in consultation with the DWP and appropriate medical input, we compile a background document to assist this process. The Society’s Benefits Officer in London is also examining the proposed changes. HOME DELIVERY: We have asked that in future tendering processes, a patient representative could serve on the working group, which is the case in England. NEW SCOTTISH COMMITTEE: Bill Wright has been appointed by the Haemophilia Society’s Board of Trustees as Chair of the new Scottish Committee (Haemophilia Scotland) and has been asked to enlist the help of representatives from across Scotland to form a committee (further details elsewhere in newsletter). SCOTTISH HAEMOPHILIA ALLIANCE/ POST PENROSE: The formation of a Scottish Haemophilia Alliance was discussed. Following the Archer Inquiry, the UK Haemophilia Alliance was joined by representatives from the Departments of Health in England, Scotland, Wales and Northern Ireland. It was generally agreed that these meetings are very useful, but it was felt by some present that discussions often tend to be overly focused on issues relating to England. The medical representatives present believed that this initiative would be a very positive step and the item will be discussed at our next meeting.

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PENROSE AND vCJD: It was agreed that a long discussion on Penrose was not appropriate for this meeting. It was reported that Haemophilia patients were now being recruited to evaluate the Coleridge diagnostic test. SKIPTON FUND: Those present felt there was a continued need to promote the new Skipton Fund arrangements for families bereaved before August 2003 as they can now claim. It appears that information about the Caxton Fund had not been given to centres. This fund is open to anyone contaminated with Hep C from blood or blood products. More information on the fund can be found at http://www.caxtonfoundation.org.uk/ UKHCDO DATABASE: There was some discussion about people’s experiences with the Database. HAEMOPHILIA SOCIETY UPDATE: The meeting was advised that the Society had a very successful AGM and Conference in Clydebank in November. At the AGM, Bernard Manson was appointed Chair of the Society, and two new trustees were elected - Matt Gregory and Kate Khair, Nurse Specialist at Great Ormond Street. WORLD FEDERATION BID: Our bid to hold the WFH in Glasgow has progressed to the next round. NEXT MEETING: The next meeting will take place on 23/11/12 in Glasgow. If anyone is interested in attending one of these meetings, please forward your name to Chairman Bill Wright via the Haemophilia Scotland office in Edinburgh. Contact details on back page.


Haemtrack | Parliamentary Motion

A new way to record your home treatment returns!

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o you receive home treatment/home delivery regularly? If ‘yes’, then you will have signed a partnership acknowledgement with your Haemophilia Centre where you agreed to complete and return accurate home treatment records in order that your haemophilia can be assessed and monitored. Instead of having to remember to complete this information on paper and then bring it into the Haemophilia Centre, why not log on instead to www.haemtrack.nhs.uk. Haemtrack: • Is a secure web based data management service connecting you to your Haemophilia Centre • Allows you to record all treatments • Allows your Centre to see your up-to-date information to help improve your care If you have access to a computer, why not take a look at this system? It’s quick, secure and very user friendly! It takes no time to keep your records up to date! If you are interested, complete the simple registration steps, which will register your interest with your Centre and once accepted, you can begin to enter your data immediately. Your data is then sent directly to your Haemophilia Centre where it can be viewed by authorised

Thanks to Richard Lyle MSP, who sponsored our recent Parliamentary Exhibition and Reception, for lodging the following Parliamentary Motion on 8 March and to the MSPs who have supported the motion.

personnel only. It is important that we have your information on how you treat yourself in order that we can maintain the best possible treatment for you. These treatment returns allow us to project how much treatment might be used on a regular basis, and ensure that the funds for this are available. This is of particular importance at a time of cost saving exercises within all areas of the NHS. Also, it ensures that: • Continuous bleeding problems can be identified and therefore any additional treatment given quickly by staff. • Recurrent problems can be discussed with staff at Clinic visits. • Target joints can be identified and discussed with your doctor. • Information is immediately available for your doctor when you require the completion of forms for benefits or legal purposes.

Motion S4M-02267: Richard Lyle, Central Scotland, Scottish National Party, Date Lodged: 08/03/2012 That the Parliament congratulates Haemophilia Scotland on its recent reception, which was held in the Garden Lobby on 29 February 2012; understands that, in Scotland, over 2,300 people have haemophilia or a similar disorder and that they, their families and carers often experience difficult circumstances; considers Haemophilia Scotland to be a highly effective charity that is dedicated to helping everyone in Scotland affected by a disorder related to bleeding; believes that there is a significant and growing demand for services that are appropriate, responsive and accessible; considers Haemophilia Scotland to be a valuable resource that provides support for everyone, including family and carers, affected by the condition at every stage from diagnosis onwards; congratulates Haemophilia Scotland on the recent appointment of its management committee, and wishes it well as it looks to the future in supporting and working to improve the quality of life of people with haemophilia and related disorders and in its bid to bring the World Federation of Haemophilia Congress to Scotland in 2018.

If you have any questions about Haemtrack, you should get in contact your Haemophilia Centre and discuss these with your Haemophilia Data Manager or Nurse Specialist? www.haemtrack.nhs.uk

Supported by: Linda Fabiani, Jean Urquhart, Jackie

Baillie, Christine Grahame, Annabelle Ewing, Nanette Milne, Maureen Watt, Hugh Henry, Gil Paterson, Alex Fergusson, Adam Ingram, Sandra White, Patricia Ferguson, Bob Doris, Jamie Hepburn, Colin Beattie, Dennis Robertson, Bill Kidd, Kenneth Gibson, Dave Thompson, Roderick Campbell, Jackson Carlaw, Rob Gibson, James Dornan, Willie Coffey, Liam McArthur, John Mason, Margaret Burgess, Kevin Stewart, Bill Walker, David Torrance, Gordon MacDonald, Neil Bibby, Neil Findlay, Mark McDonald, Colin Keir, Jim Eadie, Paul Wheelhouse, Joan McAlpine, Mike MacKenzie, Humza Yousaf

Nancy Brodie, Operations Manager Glasgow Royal Infirmary

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Fundraising |Fundraising | Fundraising | Fundraising | Fundraising

Haemophilia Scotland Needs YOU

A huge ‘Thank You’ to everyone who has raised and continue to raise money for Haemophilia Scotland, which we depend on to provide help and support for our members. If any readers or members have a fundraising idea, or wish to actively participate in a money generating activity on behalf of Haemophilia Scotland, please get in touch with your nearest Local Group or the Scottish Management Committee. Contact details can be found on the back page.

Blisters and balloons for World Haemophilia Day

ABOVE: Christopher and Paul Anderson who were fundraising on World Haemophilia Day 2011 at the Gyle Shopping Centre in Edinburgh. The photo, taken by proud dad Paul senior, also features balloon artist and children’s entertainer Travis Meyers who was also on hand to offer his support BELOW: Annual Grampian Group fundraiser on Boxing Day 2011 featured the Flintstones, who managed to raise the magnificent sum of over £1,000 for local group funds.

Paul Anderson (RIGHT), who is a member of the Scottish Management Committee, successfully completed a sponsored walk ten times over the Forth Road Bridge (17 miles in total) for World Haemophilia Day 2011. He says that he was extremely lucky in that the weather was superb – sunny and warm, but with a blustery wind off the Forth to cool him down on the Bridge itself.  He managed the multiple crossing in 5hrs 17 mins.  Paul’s work colleague, Travis Meyers, has a hidden talent as a balloon artist and children’s entertainer (www. twistandshoutballoons.co.uk), and at The Gyle Shopping Centre, Edinburgh he created all sorts of amazing balloon animals and characters for shoppers in return for a donation to Haemophilia Scotland for World Haemophilia Day 2011. Paul and Travis, between them, raised over £1,000. Well done to both for their superb fundraising efforts.

ABOVE: Paul Anderson Snr on the Forth Road Bridge

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Fundraising |Fundraising | Fundraising | Fundraising | Fundraising

Two Tackle Three My name is Jane Malcolm and I would like to tell you about a fundraising challenge my friend Tracey Joyce and I are taking part in this year to raise funds for the Haemophilia Society in Scotland. We are each taking part in three challenges. We both have personal reasons for taking these challenges on. Tracey was diagnosed with Type 2 Diabetes in October 2011 and following discussions about various medications she could be on, she decided ‘enough of all that nonsense, I’ll do it my way!’ So, in order to improve her fitness, she mentioned in passing to Jane that she would like to go running at lunchtime at Edinburgh’s Telford College, where we both work. And from that our challenge grew. My reasons for doing this are that my husband has Christmas Disease and had a major bleed in early 2011 and has been in recovery from since then. The support and help we received from The Haemophilia Centre in Edinburgh was life saving and it is difficult to say thank you in a big enough way to describe how much we appreciate them. So this is my way of saying thank you to all the staff at The Haemophilia Centre in Edinburgh for saving a man who is a wonderful husband, father, son, son-in-law, brother, brother-in-law, and uncle. The first of our challenges are in April. Tracey is cycling up Mont Ventoux, one of the major climbs of the Tour de France, on 8th April, and I will be running in the Rock and Roll Half Marathon in Edinburgh on the 15th April. We have both been training very hard. For more details about our challenges and visit our Justgiving page, please go to http://www. twotacklethree.blogspot.com/ OR http://www. justgiving.com/twotacklethree

Tracey and Jane rise to the challenge

Penrose hearings come to a close The parties represented at the Penrose Inquiry have now completed and put in their written submissions. On Friday 30 March 2012 the final oral hearing took place during which brief closing oral statements were made by the legal representatives of core participants, such as the Haemophilia Society Lord Penrose, the Inquiry Chairman, will now proceed to draft the final report, which should be available about the springtime, 2013. Due to this edition of the newsletter being published at the time of concluding submissions being made, we will leave any analyses of the Inquiry to date until the next issue, when Haemophilia Scotland will be in a better position to comment.

Active support from Active X Clinics Gavin Routledge is an osteopath who runs his own practice ‘Active X Clinics’ in Scotland. Active X Clinics have designated The Haemophilia Society as one of two charities they will be supporting on an ongoing basis. Every month they donate 10% of their initial consultation fees to the charities. They have also held two ‘Charity Massage Days’ where clients receive half-price massages with half the proceeds going to the Haemophilia Society. Active X Clinics are making a huge difference to the lives of people with haemophilia in Scotland. So, a huge ‘Thank You’ to all at Active X Clinics for their support and for donations totalling nearly £2,500 to date. www.active-x.co.uk

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Buddy Awards | Russian Exchange | Local & National Contact Details

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o try and increase public awareness of bleeding disorders the UK Haemophilia Society, together with NovoNordisk, launched a national Buddy Award programme in the Houses of Parliament. Dozens of nurses, teachers, siblings and best friends, who help to provide the extra special support that haemophilia children sometimes need, were identified and nominated for a Buddy Award. The Buddy Award winners were presented with their awards at a star-studded event on Monday 13th February at London Zoo. Two families from Scotland attended the award ceremony at London Zoo - Joshua Bramman from Aberdeenshire and Yoel Howard from Shetland along with their families.

National Buddy Awards

BACK L-R: Dick, Janette Lind, Shona Fromholc, Kay Mutch, Dom. FRONT L-R: Lauren Bramman, Joshua Bramman

‘FROM RUSSIA WITH LOVE’ - Cultural & Language Exchange Opportunity Later this year, I am hoping to host in Scotland nine young Russian people, aged between 18 and 30 years old, who have a bleeding disorder. The initiative will also feature a visit to London. For young people in Russia, opportunities to take part in a cultural and language exchange are practically nonexistent due to their condition. This is an opportunity of a lifetime and will help them improve their chances in life, which are much more restricted than young people with a bleeding disorder in the UK. The Russian Hemophilia Society have secured funding to finance the competition

and travel from Russia to the UK. My son Lawrence and I will be organising fundraising events to finance hosting them in the UK, but we need your help! If anyone is interested in helping with fundraising, hosting a young person in your home, volunteering with cultural events whilst they are in Scotland, or want to find out more, please contact me: Susan Warren - susan@haemophilia.org.uk or by telephone at 0131 557 5953.

How to get in touch with Haemophilia Scotland and your nearest Local Group

Haemophilia Scotland - 4b Gayfield Place, Edinburgh. EH7 4AB TEL: 0131 552 6585 | EMAIL: scotland@haemophilia.org.uk Grampian Keith England - Chair Mobile: 07934 585482 keith.england123@hotmail.com

Highlands & Inverness Susan Warren 0131 557 5953 susan@haemophilia.org.uk

WEST OF SCOTLAND Philip Dolan - Chair 160 Camphill Avenue Glasgow. G41 3DT Tel: 0141 649 0050 Mobile: 07974 823937 pdolan614@btinternet.com

Tayside Barclay Bissett - Chair Please contact through the Edinburgh Office

South East & Edinburgh Carolyn McGimpsey C/o: 4b Gayfield Place, Edinburgh. EH7 4AB 0131 552 6585 scotland@haemophilia.org.uk

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Haemophilia Scotland Newsletter