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Paying tribute to Lord Morris

Lord Morris

p4-5 p12 Lord Archer

Paralympics p14-15

p16-17 Ankle Fusion

News - Support - Information - Campaigning Freephone: 0800 018 6068

Chair’s Report Chris’s report opposite shows the excellent progress we have made re-establishing and revitalising the building blocks of our “central” activities. These are the vital links we maintain with the Health Service and Government, with our supporters in Parliament, with our clinical advisors, and with peer organisations. Much of this may seem unexciting, but collectively it enables us to influence care and support and to give reliable advice. Several articles in this edition of HQ explore these central activities and, I hope, clarify their importance to all our members.

central location than London, and we preceded it with a discussion at which Local Groups exchanged ideas with Trustees and staff on what members want and need and how the Society can provide support. At another session, members gave feedback on what the Society should be doing differently. Not all of this was comfortable listening for me, but it gave us some clear guidelines. We now have the immediate priorities of setting up active web pages for Local Groups together with a dedicated Facebook page on which their leaders can exchange ideas with each other. We will work towards holding a Local Group forum in May, with adequate time for discussion and creating an action plan. Other areas identified for more focus included women’s bleeding disorders, especially amongst teenagers, and the provision of counselling services.

Our newly published strategy identifies our immediate need to engage as effectively with our own members as we do with external bodies. As I wrote in the last HQ, our priority in this is to improve communication with Local Groups. We have made some progress on this, with Chris Pigden joining as an intern with the goal of creating good electronic links with Local Groups, and with Nina Benscher taking on liaison with Local Groups along with her fundraising role.

Our challenge is to deliver more, better with the same resources. Working more effectively with Local Groups and recruiting volunteers will be good first steps. I look forward to reporting progress.

As part of re-engaging with the membership, we tried to make our AGM last month a more inclusive event. We held it in Birmingham as it is a more

Bernard Manson Chair The Haemophilia Society


Chief Executive’s Report The last few months have been busy, with important developments which will make a significant difference to the Society’s work.

up a programme for visiting Comprehensive Care Centres and a number of volunteers are helping on this. The aim is to build stronger links with Centres and to raise awareness of the Society’s work to a wider group of people with bleeding disorders.

Firstly, we have re-established the All Party Parliamentary Group on Haemophilia and Contaminated Blood (see page 31). We also held the first meeting of our Clinical Advisory Committee which will advise us on publishing information on bleeding disorders and on relevant policy issues (see page 32).

Welcome to Nina Benscher our new Head of Fundraising. Nina is driving our income generation and has already met many members and Groups. We also say goodbye and thank you to Carmina Okuefuna and Vicky Sutton-Smith who have been covering Claire Treguer’s maternity leave up to her return this month.

At The World Federation of Haemophilia Congress in Paris we made our bid to hold the Congress in Glasgow in 2018. We won!! We gratefully thank everyone involved in the bid team. (See page nine).

In this issue we pay tribute to Lord Morris and Lord Archer. We are immensely grateful for all they did for our community and we will miss their compassion and support. (See pages four, five and twelve)

After a lengthy consultation, we have published our new Policy on Contaminated Blood. This was not an easy process, but we hope that the result is recognised as a fair representation of views.

Very best wishes for Christmas and the New Year.

We have also defined the Society’s strategy and put it on the website. Please send us your feedback on this and on all our work. We have revitalised contact with Local Groups over the last few months. This includes taking on Chris Pigden as an intern to work with Local Groups to develop their sections of the website. We have also set

Chris James Chief Executive The Haemophilia Society


We remember Lord Morris of Manchester, the Haemophilia Society’s President, died aged 84 on 12th August. He is widely regarded as having done more for people with disabilities than any other British politician. He had witnessed the pain of disability at first hand: his father George had been gassed in the trenches and died when he was six, while his mother was crippled with arthritis. He was elected MP for Wythenshawe in 1964 and held the seat until 1997 when he was elevated to the House of Lords. In 1969 he drew first place in the ballot for private members’ bills. He used this opportunity to compile the Chronically Sick and Disabled Persons Bill in just ten days and then steered it through Parliament to become the Act which transformed the lives of millions. This was the first piece of legislation for disabled people in the world and has been much

Lord Morris addressing our Conference and AGM imitated in other countries. In 1974 he became Minister for the Disabled – again the first in the world. Throughout his Parliamentary career, both as an MP and a Peer, he campaigned consistently on behalf of the less advantaged, including victims of Thalidomide and Gulf War Syndrome, as well as the disabled.

Lord Morris promoting his Contaminated Blood Bill

As President of the Society he supported us on various fronts, but we knew him best through his tireless work as a campaigner on the issue of contaminated NHS blood products, and the devastation that the disaster caused to the bleeding disorder community. His disgust for successive Governments’ failure


The RT Hon The Lord Morris of Manchester TOP: Lord Morris in the Lords

to establish a Public Inquiry led him to persuade Lord Archer of Sandwell to establish his Independent inquiry.

Downing Street to remember those who had died through their infections. He was working on the campaign right up to the week before he passed away.

He regarded the Government’s response to Lord Archer’s recommendations as contemptuous to the victims and he determined to carry on the fight to ensure that right was done. He drafted the Contaminated Blood (Support for Infected and Bereaved Persons) Bill as a response. He steered the Bill twice through the House of Lords only for it to be blocked by the Government in the Commons. He was also responsible for calling a meeting of new MPs in June 2010 - which led to the first ever debate on the issue of contaminated blood on the floor of the House of Commons in October 2010. He was always there driving the campaign forwards, either by attending mass lobbies in Parliament or joining widows in delivering wreaths to 10

The bleeding disorder community and the Society owe Lord Morris a huge debt of gratitude. His unstinting commitment to the campaign for justice has greatly improved the support for those affected by contaminated blood. By raising awareness with the Lords and amongst backbench MPs on the issue, Lord Morris assisted greatly with the continuing campaign – aiming for a full and just resolution. We pay tribute to a great Parliamentarian and a great friend. Our deepest condolences and best wishes go to Lady Irene and the family. Chris James Chief Executive The Haemophilia Society


World News

Paris Congress 2012 A personal view from Lincolnshire In July I attended The World Federation of Hemophilia (WFH) Congress in Paris with my husband, Malcolm. I am the mother of two young adult Haemophilia patients. I have attended previous conferences in Dublin, Montreal and Bangkok. Our registration fee was generously sponsored by Lincolnshire Haemophilia Group.

mission to raise $5m to ‘Close the Gap’ on treatment worldwide. It was heartbreaking to see films of young children in developing countries suffer pain and disabilities from Haemophilia. Monday to Thursday offered lectures and seminars from 07.00 to 18.30. Presentations came from doctors, Haemophilia nurses, therapists, psychologists, social workers, and scientists. The most wonderful presentations were from patients who reflected so many of our own life experiences with Haemophilia.

In Paris, we met families affected by Haemophilia, and their doctors, nurses and therapists from 122 countries who had travelled from all over the world. The experience makes you realise how fortunate we are in developed countries to receive excellent care and factor treatment. The future looks much brighter with the prospect of longer lasting factors and the real possibility of Gene Therapy

Topics included – take a deep breath:- muscoskeletal, prophylaxis treatment, women and bleeding disorder, pregnancy, Hepatitis, HIV, genetics, long lasting factors, dental care, physiotherapy, occupational therapy, and psychological care. Many of these presentations or posters are now available on The WFH website or in their publications.

However 75% of the world’s people with Haemophilia still receive no or very little treatment. The World Federation are trying to close this gap. The Opening Ceremony was dedicated to the 50th Anniversary of the WFH and its

We heard that the family should be fully included in care from


World News the cradle to the grave and that emotional health was also paramount in care. The information obtained will be so useful to share with family and other group members. It will allow much more informed decisions to be made.

Our stall got quite busy!

The most exciting information was on longer lasting factors product which may mean treatment with far fewer injections. I was also fascinated to hear about the six patients who took part in gene therapy trials with Dr Tuddenham in the UK. I was amazed to hear a patient speak about his personal experience of gene therapy and the reduction in the number of bleeds and reduction in treatment. I do hope this is a brighter future

patients from the USA, Canada, Australia, New Zealand, Africa and Europe. Many countries were excited by the UK work with Women and Bleeding Disorders. We shared contact details and published literature. The Australian Society invited us to see them in Melbourne in 2014 On Wednesday evening 12 UK representatives went out to a small French restaurant. We made new friends and renewed older friendships.

There was a “cultural event� on the Tuesday evening. This included a brilliant mime act and very French dancing. The entertainment was followed by a cocktail party. This gave us the chance to chat to families and professionals from all over the world including Russia, India and Africa.

Although we worked nine to ten hours a day, we found three hours to visit the Eiffel Tower and have a boat trip on the River Seine. Congresses are held every two years; please all try to be one of the delegates attending. It is the most amazing opportunity and you will have an incredible experience. There are exciting locations to look forward to, with Melbourne in 2014, Miami in 2016, and Glasgow in 2018.

A very large Exhibition was available each day. The UK Haemophilia Society had a stand in the Exhibition Hall. UK representatives met here each day and enjoyed helping Chris, Dan and Bernard on the stand. We chatted to professionals and

Eileen Ross Haemophilia Society Member Lincolnshire Haemophilia Group


Conference and AGM Annual Meeting Success and to feed back their questions and comments to the Board and staff. As shown by Plenty to eat and drink the photos here we succeed in attracting good audience, and there was certainly a lively debate, with many useful suggestions on improving our activities.

The 62nd AGM of the Society was held in Birmingham on 3rd November.

New trustees were elected This marked a departure from having the AGM in London every other year. Also in a departure from previous years, the AGM was extended into a “mini conference” by starting with a forum for Local Groups, and ending with a talk by a distinguished guest speaker, the former Head of the World Federation of Hemophilia, Mark Skinner.

Lots of questions

The feedback from the day was very positive, we would like to build on this and bring double the numbers to an even bigger and better event next year. As part of this we will advertise details of the AGM in June’s HQ. See you in 2013!

The aim was to encourage a wider crosssection of the membership to attend

Sixvibe joined us for the day

“A lively debate with many useful suggestions”


World News The World Congress is coming to Glasgow As you can read on pages six and seven the World Federation of Hemophilia (WFH) Congress is an extremely important opportunity for people living with bleeding disorders and people working with the conditions to gather together. The latest developments are discussed and experiences shared. The Congress is vital for advancing the care of people with bleeding disorders all over the world.

Aileen Crawford from Glasgow City Marketing Bureau and Dr Paul Giangrande from Oxford who became the bid spokesman. They put a fantastic bid together which was presented by Paul and Aileen in Paris at the WFH this July. I am happy to report that even against another excellent bid from Mexico, the UK was chosen and Glasgow will be the host of the 2018 World Congress. I'm certain that anyone reading this will join me in thanking the team for dedicating their time and skills in what was, at times, a very complicated and difficult undertaking. The Society still has to establish governance for the project to organise the event itself, but I am sure that the bid team and many others will want to contribute. We all wish those involved luck in the years to come – and if you are interested in participating, please contact Chris!

The WFH Congress works in a similar way to the Olympic Games - in the way that the venues are chosen, cities put in a bid, are shortlisted and a vote is held. Although the UK is world renowned for the quality of our care and the amount of research undertaken, it has never hosted the WFH Congress. So we decided to mount a bid. Our bid team consisted of Nancy Brodie and Andrew Brewer from Glasgow Infirmary, Susan Warren from Haemophilia Scotland, Liz Rizzuto, Bernard Manson and Chris James from the UK Society, Kathleen Warden from the Scottish Exhibition & Conference Centre,

See you all in Glasgow! Matt Gregory Trustee The Haemophilia Society

Sadly, Robert Muir, who was a key member of the local team who welcomed the WFH delegation on its inspection visit•to Glasgow in January, died as this edition of HQ was going to print. •We send condolences to his family.


European News EHC Annual Conference 2012 - Prague Personally the best thing about the weekend was the opportunity to meet and socialise with other people with bleeding disorders and those providing treatment, support and advocacy across Europe. I spoke with representatives from the Dutch, Polish, Irish and Czech organisations and I hope to be able to maintain these contacts. If you would like to know more about the conference then please feel free to contact me at the Society.

On 26th – 28th October 2012 Bruce Norval and I travelled to the Prague for the European Haemophilia Consortium (EHC) Annual Conference. Having only been a Trustee of the Society for six months the trip was a great opportunity to increase my knowledge of bleeding disorders in general. There were presentations on a wide variety of subjects. You can read the program at . Materials from the presentations will also be available shortly. The EHC do some fantastic work for the Haemophilia community in Europe. I would urge you to look at their website at to find out more.

Adam Fleming Trustee The Haemophilia Society

Belfast wins 2014 EHC Conference “Get here early before the rest of the world arrives.” Lonely Planet At a meeting of the European Haemophilia Consortium (EHC) Belfast was selected to host its 2014 Conference. The bid was presented on behalf of the UK Society by Gordon Clarke, a longstanding Haemophilia volunteer and resident of Belfast, with support from the Belfast Visitor & Convention Bureau. Dublin was also under consideration for the honour to host. When asked “why Belfast?” Gordon explained… “I’ve been a Haemophilia volunteer for 38 years and have travelled to and

been made welcome in many countries. However, for the lion’s share of that time I was unable to extend a proper Northern Irish welcome to others because of our security issues. Of course that is now changed and with Belfast today recognised one of National Geographic’s top ten destinations, I felt the time was right.” Seemingly so too did the decision makers! Gordon Clarke Member The Haemophilia Society


Teenagers Online Time for you to get involved at SixVibe Everyone’s had a hectic year with the Jubilee, WFH and the Olympics, and we’ve been busy at too. SixVibe is an online community for young people with bleeding disorders. It was founded last year by Kate Khair from Great Ormond Street and Mike Holland, and has been growing ever since.

Dr Kristin Shine has just joined the team to take it to the next level and we’re starting to build in tools to help teenagers manage their condition, work in closer partnership with healthcare professionals, and inspire each other with their stories of challenge and achievement.

bleeding disorders to help us develop the community and to find ways to support education about bleeding disorders. After all, you are best placed to know what should be on SixVibe and what it should do. Interested in helping us? Just sign up to SixVibe, post a message and we’ll get back to you. We also want a group of “grown-ups” to help us bring together patients, health care professionals and industry to ensure we meet common goals. If you have the kind of experience that would help us on that journey, or even if you’d just like to get involved, please contact Mike ( or Kristin ( And of course, you can follow @sixvibe on Twitter to keep updated on our progress.

We’re also starting to talk to companies about how we can help them to improve their products and services, and ultimately work together for improved health.

Kate Khair Trustee The Haemophilia Society Haemophilia Specialist Nurse at Great Ormond Street Hospital

One of the first things we’re planning is to set up an advisory panel of teenagers with


We remember Lord Archer

Lord Archer of Sandwell QC Lord Archer led a truly remarkable life. As a boy he worked in a coal mine during World War II. During his career he distinguished himself in law and frontline politics as well as in the voluntary sector. The Society will be forever grateful for his decision to accept an invitation from the late Lord Morris of Manchester to conduct a historic Independent Public Inquiry into Contaminated Blood and Blood Products (see During the course of the public hearings, Lord Archer displayed deep humanity, understanding and compassion as he heard the harrowing details of the impact on individuals and their families. Despite the limited resources of the Inquiry he worked tirelessly to read all the evidence that was submitted. The Oral Hearings he presided over gave many infected people and bereaved families the opportunity to speak in public about the impact of the tragedy for the first time.

their slowness in responding to the emerging risks. He made far-reaching recommendations which, although not fully implemented, have led to significant improvement in the Government’s response. The two years of his life which he gave to the contaminated blood issue revitalised political interest in the campaign. Without his efforts it is highly unlikely that the last Labour Government and the Coalition Government would have taken the important steps they have – in particular to improve the financial support schemes. After the Inquiry he supported Lord Morris in his on-going campaign to persuade the Government to implement the recommendations, regularly speaking in debates. We feel his loss very deeply and our deepest condolences and sympathies are with Lady Archer and the rest of his family.

Dan Farthing Policy & Communications Manager The Haemophilia Society

His report was extremely critical of successive Governments and


Membership Patients’ tribute to Dr Mark Winter During a 30-year career in Haematology, Mark has been a pioneer in a number of areas. He has particularly been one of the strongest advocates for those with bleeding disorders and, subsequently, those with HIV/AIDS. Mark served as Haemophilia Consultant and Centre Director for Kent from 1983, first at Margate and then at the Canterbury Comprehensive Care Centre, caring for hundreds of patients. He was also instrumental in the foundation of the Macfarlane Trust. Through his work with the Haemophilia Centre Directors Organisation, a national Haemophilia Alliance was established. This led to the first Department of Health approved National Service Specification for people with Haemophilia.

Mark sitting on the bench given to him by the local group along with some cricket tickets More than this though, Mark cared for his patients with humility, kindness and a level of professionalism rarely seen. Nothing was too small and he always had time. He garnered respect from his patients, coworkers, professional peers and anyone who met him. He inspired his patients to go and achieve to the best of their abilities.

In fact, Mark initiated a number of projects to improve patient care, from patient diaries and subsequent internet records which we all now use - to external audit programs at Centres to maintain standards across the UK and abroad. His speaking and lecturing was also international, not to mention his sustained research into bleeding disorders.

Mark wouldn’t say he has retired – more adjusted his work-life balance (at long last). He still teaches medical students and young doctors, but now enjoys sport, travel, time in his garden and his family. He will be greatly missed by everyone who worked with him or were fortunate enough to have him as their doctor.


Gill and Dan Jolley The Haemophilia Society Kent Group

Paralympics Jack Bridge is an Inspiration

Jack celebrates another great swim Copyright: Getty Images

Swimmer Jack Bridge doesn’t mince his words about his time at the Paralympics: “It was the best experience of my life.” “I imagined what it would be like and it exceeded that by ten times,” says Jack, aged 18, who is still at school and doing his ALevels. Not only did he reach the final, but knocked two and half seconds off his previous best time in the breast stroke, and then came fourth. He and his coach were ecstatic with his achievements. Jack feels he has plenty of years ahead to gain medals and he has got lots more to give. “The winner was nine years older than me.”

He was borne along by the atmosphere in the Aquatics Centre at Olympic Park. “The crowd of 17,500 was quite special – you feel they are on your side. Every time you put your head out of the water you can hear them roaring: “Go, go, go!” The Olympic Park had its surreal elements however. “There has been talk of being in a certain bubble,” said Jack. “I was five minutes’ walk from the food and two minutes’ walk from the bar and games room. You get your laundry done, and you are away from the busy world outside the park. It is quite weird when you come back out of it.”


Paralympics Jack formed a strong bond with his roommate Jonathan Fox (who won gold in his grade of the 100 metres backstroke). “He was the first to hear the national anthem,” Jack says. He was in a block with Paralympians from Manchester and they had been training together for the previous month, but all the Paralympic athletes bonded.

a great job of getting it across to the British people, and the news channels did too. “There was a buzz around the country.”

Meeting other Paralympians was an important part of the experience for Jack. “It was great going up to David Weir and saying hello and hanging out with the Americans. You feel you are making friends for the future.”

In the short term, Jack is back at college after four weeks off and in the long term he is aiming for the World Championships in Canada. He is working towards the trials in April and he will be back in the pool very shortly. The Paralympics has been “just brilliant” for Jack and the message is that bleeding disorders are no barrier to achievement, and the crux of the matter is to aim high, and fly. Sue Royal Trustee The Haemophilia Society

“It was a multi-sport event and you were part of Paralympics GB. And the whole of GB got behind the team. Channel 4 did

During the Paralymics many members got in touch to say how much Jack had inspired them

Copyright: Getty Images


Ankle Fusion The ankle joint is one of the most common sites of joint bleeding in people with Haemophilia. Compliance with prophylaxis, supportive appropriate footwear, physiotherapy assessment and treatment of the posture, shape and movement of your foot and ankle is crucial to prevent joint bleeding, reduce any synovitis (constant joint swelling) and prevent further joint damage. If severe joint damage is already present orthopaedic surgery including ankle joint replacement or fusion may be an option to restore joint function and quality of life. People with these problems may face the decision about if and when to have an ankle fusion. We asked Richard Elsby, who has severe Haemophilia A and von Willebrands Disease type 2N, to tell us about his experience of the operation.

My Ankle Fusions Richard Elsby A positive and personal view Growing up my ankles were always a problem. I could never find the right shoes. Some didn't support enough so I was liable to have a bleed. Others caused bleeds outright. In my mid-teens I started finding that my ankles were becoming weak and would 'roll-over' so the sole of my foot would be facing my other foot. This would happen whilst walking. As I went to plant the foot on the floor it would roll and

Richard’s left ankle has healed well

then take my weight. 75% of the time this Richard Elsby caused another bleed. By the time I was around 16 or 17 I started to have pain when putting weight through my right ankle, it felt like someone was sticking blades into the joint so found myself walking on my toes to lessen the pain. I tried physiotherapy and splints throughout the years to no avail. That’s when I started to pester my Haematology Consultant for a solution but because of my age everyone was very reluctant to do anything. At the end of 2008 I got my wish


Ankle Fusion and I had my right ankle fused. It was the best thing I had ever done. The pain had instantly gone! Within 12 weeks I was up and walking without any support. Initially, I had fears that there wouldn’t be enough flex in my foot to allow walking on inclines. I worried that I would have to have my shoes modified but thankfully that was not the case. Straight away I was walking up and down hills which I hadn’t been able to tackle in a long time. I had no issues driving or riding a bike. I was ecstatic - I had gone from using opiates to control the pain pre-surgery to using nothing!

granted and within a matter of months the surgery was done and I was back on my feet. Again I had fears about walking inclines, especially as I now had both my ankles fused. However, once again I had no need to worry. Yes, really steep inclines are harder to walk on as is uneven terrain. For me that’s a small price to pay. Would you rather stay at home doing nothing with your feet up and in agony or would you rather have the fusion(s) and take a slightly different route? Richard Elsby Member and Youth Leader The Haemophilia Society With thanks to Dr David Stephensen (PhD), Physiotherapist, Kent Haemophilia Centre and member of the Haemophilia Society Clinical Advisory Committee for his advice on the introduction to this article.

Two years later I started to notice the warning signs in my left ankle. I was getting the odd knife-like pain that I had previously encountered with the other ankle. I decided to nip it in the bud and asked for another fusion. My wish was

With both ankles fused Richard is in much less pain


AFRO Group

Something Spooky Going On‌ The London based AFRO group had a lot to scream about on Saturday 27th October, as The Haemophilia Society opened its creaky doors for the last quarterly meeting in 2012. With carved pumpkins, hanging bats, and ghostly treats the Society offices sported an unusually spooky atmosphere. The adults bravely attended the meeting and discussed their work within central Africa - despite the ghoulish attempts of the young AFRO group to terrify them with their costumes and scary painted faces. If you would like to attend the next meeting please email or call the information and support line on 0800 018 6068. Georgie Robinson Information and Support Manager The Haemophilia Society

Thank you to all the brave souls and scary ghouls who came along


In this edition of HQ we have two great competitions for all you budding writers or artists. This is your chance to win vouchers to spend in the New Year. We also have information on some fun-packed activity weekends and camps we have coming up in the next year.

My bleeding disorder didn’t stop me... Have you or your family ever thought that you couldn’t do something because of your bleeding disorder? Only to find out that you can?

Time to get writing

Have you been on an adventure? An exciting bike-ride? Rock climbing? Horse riding? An activity weekend?

We want to hear from you. We want you to a write a story of no more than 800 words. Tell us about any exciting or memorable experiences you’ve had whilst living with a bleeding disorder. Whether it be about yourself, or a member of your family, tell us about a time where a bleeding disorder didn’t stop you. The competition is open to all Under 14s. Send your story to our office or e-mail it to Claire (contact details at the back of this magazine). The winning story will feature on the Young Bloods website and in our spring magazine. The competition closes on 28th February 2013 and winners will be contacted directly.



Writing Competition

Artist Competition

“Close the Gap” Are you an aspiring artist? Would you like to see your design used as part of a national campaign? Would you like to help us raise awareness? This is your chance. We would like you to design a campaign poster. The poster is to raise awareness about how people in other parts of the world do not have access to enough treatment. It should mention the UK’s treatment, and how we want to ‘close the gap’ for other countries. The winner will feature as part of the Haemophilia Society’s awareness raising work for World Haemophilia Day 2013. Here are some facts to get you started on your poster: Ÿ An estimated 6.9 million people are living with a bleeding disorder. Of these, 75 per cent remain undiagnosed and receive inadequate care or no care at all. Ÿ A child growing up with a bleeding disorder in a developing country may suffer needlessly, experiencing the crippling effects of untreated bleeds. They often miss days of school or don’t attend school at all. Ÿ We want to urge governments around the world to be true to the theme “close the gap” and ensure treatment for everyone. Even more information is available on the World Federation of Hemophilia website – The competition closes on 31st January and is open to Under-16s. You can design your poster by hand or on the computer, on one side of A4 paper. Send it to the Haemophilia Society office, or e-mail it to Claire by the 31st January 2013 (contact details are at the back of this magazine). Please remember to include your name, age and address with your poster. Winners will be contacted directly.

Activity Weekends This year we’ll be running two activity weekends. Meet up with friends you made last year or come make new friends and try some exciting activities. There will be a weekend for 8 to 12 year olds at Peak Venture, Kingswood centre, South Yorkshire from Friday 24th May to Monday 27th May 2013.

The second weekend will be for 13 to 16 year olds at Dalguise, Perthshire, Scotland PGL centre from Friday 26th July to Monday 29th July 2013.

At the activity weekends you will meet other young people with bleeding disorders. You can get involved with activities such as abseiling, kayaking, raft building, archery, zip wire and team building. We have lots of Youth Leaders coming on the activity weekends. They either have a bleeding disorder or have someone in their family who has one. The Youth Leaders will get involved with the activities, and are there to support you and help you try new things. But most of all, they are there to help you have fun! All Haemophilia Society events are open to any child in a family affected by bleeding disorders. That means that siblings are welcome too. For more information, please contact Claire. Contact details are at the back of this magazine.

With so much to try why not come along?

Barretstown is a charity which runs a specially designed camp in Ireland, providing Therapeutic Recreation programmes. These are for children with serious conditions and illnesses, and their families. Children with bleeding disorders are welcome to take part in their Children & Teen Camps in the summer or their Family Camps in the spring and autumn. Barretstown has offered us several places in their camps throughout the year that we thought you might be interested in. For dates please visit or contact Claire. Barretstown will book and cover your flights and everything onwards. You only need to organise and pay for getting to and from the airport. You can find out more about what they do at If you’d like to find out more or book your place please contact: Family Liaison Department l Barretstown T: +353 (0) 45 863 147 E:

Vicky Sutton-Smith The Haemophilia Society Outgoing Children & Families Officer Claire Treguer Children & Families Officer The Haemophilia Society

World News WFH Lifetime Achievement Prestigious award for Professor Christine Lee This summer, the World Federation of Hemophilia (WFH) awarded its Lifetime Achievement Award for only the second time in its history. The recipient is Christine Lee, Emeritus Professor of Haemophilia at the University of London, who was consultant and Director of the Royal Free Haemophilia Centre and Haemostasis Unit from 1987 until her retirement in 2005.

scientific papers and edited eight books including the standard Textbook of Hemophilia. In 1995, she founded the international journal Haemophilia, which she continues to co-edit. Since its inception, this has been the official journal of the WFH. She has also organised publishing workshops at WFH congresses to help new researchers publish their work.

The WFH award honours an individual for an outstanding body of work over a significant part of their lives. The only previous awardee is Dr Bruce Evatt of USA in 2006. The award to Christine is thus a very special event, recognising her unique contribution globally.

Christine was chair of the WFH International Haemophilia Training Centre program from 1996-2002, and was a member of the WFH executive committee from 2000-2002. She organised and participated in training workshops in many countries, including India and Pakistan, and in 2002 organised and hosted a joint WFH-WHOISTH (International Society on Thrombosis & Haemostasis) meeting on the delivery of treatment for Haemophilia.

Christine has published more than 300 peer-reviewed

Alison Street MD makes the presentation to Professor Lee

As Christine steps down from her editorial role at Haemophilia, it is very fitting that her incredible contributions to patients and clinical colleagues around the world, and the WFH, are recognised by this prestigious award. Alison Street MD WFH Vice-President Medical (2008-2012)


Raising Awareness Emma raises Awareness

When I was asked to tell my story I couldn’t help but feel apprehensive. After all, why would anyone want to read anything about me? But now, after seeing it printed in a magazine, I’m glad I said yes.

When approached by a journalist I was anxious to say the least. I didn’t know what to say, or how to say it. But, fortunately, that wasn’t my problem! The journalist asked questions, and knew exactly what to ask to get what she needed for the story. She asked questions about the bleeds I’ve had, and how I treated them. She also wanted to know about how people react when I tell them, and if it affects me emotionally at all.

Emma, a professional model, is keen to raise awareness about von Willebrand’s


Photograph by Gavin Rolph (

One of our members, Emma Alicia who has Type 3 von Willebrands, recently gave an interview for Pick Me Up magazine to raise awareness about living with the condition. She told us about her experience raising awareness.

Photograph by Jason Gould (

Raising Awareness

“You might not think anyone would want to know about your life, but someone out there definitely wants to read it.”

After we finished the interview, she took a few days to turn it into an article. Once she had, she e-mailed it over to me, so that I could read and approve it. If there was anything I didn’t like, or wasn’t sure I wanted in the article, I was able to say and it was amended. When the article came out, I immediately went and bought a copy. I had sent some pictures to go alongside the article, and seeing the piece as a whole was really exciting.

I got lots of positive feedback about my article, and I would encourage more people to tell their stories. They go a long way to raise awareness and promote the charities that support every sufferer. You might not think anyone would want to know about your life, but someone out there definitely wants to read it. If you would like to tell your story please call Dan Farthing on 0131 557 5953 or email him on Emma Alicia Member The Haemophilia Society


Platelet Function Disorder Noah, Ruby and Maya

Interview with Funny Blood’s founder Ruby Edwards Ruby Edwards is mum to Maya (eight) and Noah (four) and they live on a farm at the foothills of the Malverns, Worcestershire. Noah has Platelet Function Disorder (PFD) with Thrombocytopenia. Ruby founded Funny Blood and has given up her to job to share the information she had collated, educate people and raise awareness. Noah has a low number of platelets in his blood and they do not work correctly. Even a minor bump may cause excessive bruising. If Noah cuts himself he can bleed for a very long time, often requiring urgent attention and treatment. Noah always carries an emergency bag with him which includes clothing for a hospital stay. If he has a serious bleed he needs a platelet transfusion and medication including Tranexamic Acid and Octim Nasal Spray (Desmopressin). Ruby told me that she always knew that Noah’s condition – originally diagnosed as immune or Idiopathic Thrombocytopenic Purpura (ITP) – would have a huge impact on their lives. Noah needs to be monitored continually. When he was younger Noah often wore a

helmet but now he has started school he wears it only when climbing. Ruby is keen to keep him safe while giving him opportunities to do everything everyone else does. Ruby is rightly proud of what Funny Blood has been able to achieve. The Funny Blood team recently auctioned off a Team GB kit that Stella McCartney donated at a local Chamber of Commerce event, raising £380. After many appearances on local radio Ruby was interviewed on BBC Breakfast TV. Ruby says this was a brilliant experience and the scariest thing she’d ever had to do. Funny Blood hopes to become a UK-wide charity raising significant funds to aid research into the rare condition. They will also continue to raise public awareness of PFD by teaming up with The Haemophilia Society. If you would like to know more about Funny Blood go to


Chris James Chief Executive The Haemophilia Society

Photograph with the kind permission of Marvern Gazette

Funny Blood

Services What do we tell the Department of Health? After the Archer Report the Department of Health (DH) agreed to have twice-yearly meetings with the Haemophilia Alliance, of which the Society is a founding member. These meetings are to give us a chance to raise issues and be consulted on policy. Patients and parents from all over the UK attend meetings and we Chair every other meeting. I attend as CEO representing the Society.

Matt Gregory is one of the Patient Representatives at Alliance meetings To make the most of these very important meetings we send the DH a list of issues three months in advance. This means that the civil service has plenty of time to do the work needed to respond. We raise a wide range of issues. At the moment we are working to make sure everyone has access to Comprehensive Care. We also push for a patient representative to be involved every time decisions are taken about bleeding disorder treatment or care. This means not just your Centre discussing

your own care with you, but also making sure patients are fully involved in how the whole system works. We also raise a lot of issues that you tell us concern you. This includes the impact of the vCJD “at risk� status and concerns about potential threats from newly identified viruses not currently known to cause illness, such as XMRV. At the moment we are also talking about the need for a new Hepatologist in Wales. We have been told that issues about access to the Skipton Fund or Caxton Foundation are not part of the Terms of Reference so we have raised these directly with the Secretary of State for Health and await his response. To make the most of these very important meetings we need your help. If you know about any issue important enough for us to raise directly with the Department of Health, please contact Dan Farthing at, or Chris James at, or call us on 020 7831 1020. Chris James Chief Executive Officer The Haemophilia Society


Benefits Are you ready for the benefits changes? From April 2013 the government’s Welfare Reform programme will start to pick up momentum with the introduction of the Personal Independence Payment, Universal Credit and the ‘localisation’ of Council Tax Benefit. This is on top of the migration of existing Incapacity Benefit recipients to Employment and Support Allowance (ESA).

Start to prepare! Our members’ experience shows that completing claim forms thoroughly and providing supporting evidence at the time of claim increases the chances of a claim being successful. The following suggestions may help with ESA and PIP claims: Complete treatment records and keep copies for yourself.

Attend review appointments at your Haemophilia Centre, particularly for orthopaedic reviews. Make sure Haemophilia Joint score assessments and ‘Activities of Daily Living’ assessments are updated at least once a year. This will be useful information for centres to provide in supporting letters. Keep informed and seek help where available: Ÿ We will be developing guidance materials on our website.

April 2013 Personal Independence Payment (PIP) starts to replace DLA for adults (16+). If your DLA award is due for renewal from April 2013 onwards then you will have to apply for PIP instead. Universal Credit will be introduced in ‘pathfinder’ areas in the North West of England.

Get in the habit of keeping a ‘bleed diary’. List all ‘on demand’ treatment, details of the bleed, and make notes of the effect a bleed has on your day-to-day life and for how long. Include mobility difficulties. This will help you provide a picture of the fluctuations in your condition over time.

Council Tax Benefit will cease to exist in its current form. Each local authority will run its own scheme (details are not yet available).

October 2013 The re-assessment of all existing adult DLA recipients under the new PIP regulations begins. Universal Credit will be rolled out on a national basis.


Benefits Ÿ Turn2us has very useful information about the changes ( on__resources/benefits.aspx).

benefits is stressful; not being able to find paperwork when you need it is even more stressful!

Ÿ The Caxton Foundation offers support with benefit claims to anyone who has received a Skipton Fund payment in the past.

Nigel Pegram Benefits Information Worker Start to organise your paperwork. The Haemophilia Society Keeping a ring binder file for all Available for telephone guidance your benefits paperwork is a direct line 020 7269 0686 good idea. Making a claim for Wed & Fri, 10 – 3 Benefits advice and support for Macfarlane Trust beneficiaries and people who have received a payment from the Skipton Fund.

Contact: If you are registered with the Macfarlane Trust: call Roz Riley on 020 7808 1176.

If you are a Macfarlane Trust beneficiary or have received a payment in the past from the Skipton Fund, you can now be referred for specialist advice and support with benefits claims. Help is available with: • Claims and appeals for Employment and Support Allowance (ESA) that you may be going through as part of the migration of all existing Incapacity Benefit recipients to ESA. • Claims for Disability Living Allowance (DLA) and Attendance Allowance.

Other issues with benefits.

If you have received one or more Skipton Fund payments AND have already registered with the Caxton Foundation: call Roz Riley on 020 7808 1176. If you have received one or more Skipton Fund payments but you haven’t yet registered with the Caxton Foundation: call the Skipton Fund on 020 7808 1160. The Caxton Foundation can also make financial assistance grants to individuals. More information:


Representing You What the new Health Act means for us Most people know that there have been big changes to how the NHS is organised in England. Media attention has focused on services being commissioned more locally under the direction of GPs. This will not happen with Haemophilia Services which are being centralised instead. The Health Services in Scotland, Wales and Northern Ireland are completely devolved so are not affected by the Health Act.

An important change is that Centres are being asked to provide more information to prove that treatment is effective. They are working extremely hard to minimise the impact of this data collection on people with bleeding disorders. You can help demonstrate how effective treatment is by filling in treatment records and making sure your Centre knows when you have had a bleed. If you’d like to do this electronically then ask your Centre about Haemtrack. Haemtrack lets you provide this information online or through an iphone app. This data will also be used by your Centre to improve the quality of your own care. If you have any problems as a result of the new data collection requirements, or anything else impacting on your care, then please let me know on 0131 557 5953 or

Commissioning is all about what the NHS will pay for and making sure that money gets the best possible results for patients. All the commissioning of Haemophilia service in England is now the responsibility of the new NHS Commissioning Board. I am one of three people from the Society on a new Clinical Reference Group for Haemophilia (CRG). The CRG advises the Commissioning Board on issues such as what care needs to be available and how to measure how successful it is. Soon all Haemophilia Centres will have a contract with the Commissioning Board to provide Haemophilia Care. The aim is to make sure that everyone in England has access to the whole Comprehensive Care package. It shouldn’t matter where you live or which Centre you attend, you are still entitled to the best possible treatment and care.

Dan Farthing Haemophilia Society Policy and Communications Manager


Representing You A louder voice for Bleeding Disorders All Party Parliamentary Groups (APPGs) are the officially recognised way for MPs and Peers to work together on specific issues. The old APPG on Haemophilia secured several debates and was instrumental in establishing the Archer Inquiry, but had lapsed. Having a strong APPG means we can stand up for people with bleeding disorders much more effectively in parliament. For this reason, a new APPG on Haemophilia and Contaminated Blood was established on 17 October. (Despite the name it also focuses on healthcare and benefits issues.) Members from all over the country contacted their local MPs to encourage them to come along. Thanks to your efforts, nine MPs and Peers came to the inaugural meeting and elected Jason McCartney MP and Diana Johnson MP as the Co-Chairs of the new group. We are grateful to Diane Abbott MP, Jim Cunningham MP, Mark Durkan MP, Jonathan Evans MP,

Andy Slaughter MP, Sir Gerald Kaufman, Baroness O’Caithain and Bob Blizzard (on behalf of Michael Connarty MP) for attending the meeting. The APPG is off to a good start with 35 members already - but we need your help to reach our target of 50. MPs are much more likely to join an APPG or attend a meeting if someone they represent asks them to. On our website you can find out if your MP is already a member and how to go about asking them to join if they haven’t signed up yet. Campaign/Campaign+in+ Parliament


If you would like to support the work of the APPG by being your local contact for your MP, then please let me know on 0131 557 5953 or dan@haemophilia. and I will keep you informed about future meetings and policy decisions. Dan Farthing Policy & Communications Manager The Haemophilia Society

Audits Clinical Advisory Committee This new Sub-Committee of the Society met for the first time on 1st October. It is very important that any information about bleeding disorders we provide has been thoroughly checked for accuracy and is evidence based. This Committee will help us to do this. It is made up of a multi-disciplinary group of health professionals and lay members.

They have already begun to advise the Society on our information on rare bleeding disorders and policy issues. You can see a report of their first meeting on the website. If you don’t have access to the web, please call us and we’ll send you a copy.

Membership of The Haemophilia Society’s Clinical Advisory Committee

Matt Gregory (Chair) Dr Rezan Abdul-Kadir Dr Gary Benson Dr Andrew Brewer Susan Hook Robert James Kate Khair Dr Mike Laffan Dr Mike Makris Mark Simmonds David Stephenson


Audits Patient Audit How would you like to scrutinise the workings of a Haemophilia department? Every three years, we work with the United Kingdom Haemophilia Centre Directors Organisation (UKHCDO) to help them review the performance of Comprehensive Care Centres. The Audit Team is made up of a Haemophilia Doctor, a Haemophilia Specialist Nurse and someone with a bleeding disorder – or the parent of a child with a bleeding disorder. ‘James King’ (not his real name for privacy reasons) has been a Patient Auditor before and has just completed his training, including a mock audit, for next year’s audits.•We asked him to tell us about his experience of taking part.

Talking to the Head of Department it became clear just how valuable the audit process is.•The Centre has been able to use comments in previous audits about the facilities for waiting patients and families to push for improvement with the hospital’s management.• The result has been that he was able to show me the plans for a new purposebuilt clinic which is currently under construction. It will be close to the car park and have adequate self-contained space to make patient visits and staff duties more congenial. There will also be more space in the treatment rooms and around beds. It is great to see the audit process helping a Centre get the new facilities it needs.

Being a Patient Auditor I found the Department I visited on Level Three. On entering the clinic I found a brightly lit reception desk. I’m accustomed to receiving a warm welcome at my own clinic and this visit made me realise just how important that personal relationship is.•• There was a board with pictures and the names of the staff in the department. I was pleased to see a full complement of pamphlets was also promptly displayed.

Overall the training day was excellent and has really helped me to prepare for next year’s audit. The training was very comprehensive and there was plenty of paper to take away! Those in charge were very knowledgeable about Haemophilia and sympathetic to those who weren’t. Events like this are a great opportunity to get together with other patients. There is always a fantastic sense of camaraderie as everyone swaps stories. James King Member The Haemophilia Society


Fundraising Fundraising at the British 10k We had a great running team at the British 10k this July. I was delighted that Kenny Anaedozie, Vicky Sutton-Smith, Surinder Kaur Jandor, Sara Wort, Mark Wort, Paul Orchard, Melanie Lusher, Cameron Lusher and Julian Potter all joined me for this 10K run. It was an exciting run through the streets of London, starting outside the world-famous Hard Rock Café on Piccadilly and ending our journey in Whitehall just past Downing Street. We ran past some of the country's greatest landmarks, including Big Ben, The London Eye, St Paul's Cathedral, Trafalgar Square and Westminster Abbey.

succeeded in completing the race. Receiving our medals, we felt extremely proud and thought they looked particularly good with the stunning tutus some of the team were wearing! All together we successfully raised £2,286, which is a fantastic achievement. I’d like to give a special mention to Surinder Kaur Jandor who has ran the British 10K for the society twice now, and raised £885. Carmina Okuefuna Former Community Fundraising Officer The Haemophilia Society

With some sunshine and quite a few rain drops, we all

Thank you to all our runners and everyone who sponsored them

Fundraising Marathon London Marathon 2013 We were very excited this year to be phoned by Virgin London Marathon and be told that after 10 years of waiting, we have finally been given a Golden Bond place in the London Marathon. This brilliant news means that we now have 5 places in the event for the next 5 years!

£5,000 which is fantastic and we wish him and all the runners supporting The Haemophilia Society the best of luck with training and fundraising.

This is a very exciting opportunity for the Society; it not only gives us definite places for people who would like to run for us, but it also provides a great opportunity for us to raise the Society’s profile at such a large event. Marathon running is not an obvious activity for someone with a bleeding disorder, but we hope to find plenty of family and friends who would take the places instead. This•year running for us we have Tim Metzgen, the Society’s Treasurer. Tim has set a target of

Unfortunately, we no longer have any spaces left for the 2013 marathon, but If you would like to be there on the day to support the runners, then get in contact with me on 0207 269 0687 to find out where we will be standing and supporting everyone – you can even join us in the pub after! And don’t forget to get in touch with me if you would like your chance to have one of these places ready for the Virgin London Marathon 2014! Nina Benscher Head of Fundraising The Haemophilia Society

Our CEO, Chris James, running for us in the London Marathon last year


Fundraising A huge ‘Thank You’ to… Jake Kingsbury, Cathal McCosker, Alex Corbett and Matt Phelan completed Hadrian’s Wall and raised a staggering £2,290 – a big thanks! Jackie Hobday, Michelle Stockwell and Tam Selby raised £200 by walking the 13 mile Colourthon in Southend-on-Sea, Essex.

Andrea Elsmore ran the Caver Wolverhampton City Marathon and raised £115 for the Society.

Emily Kent ran the Bristol 10K and raised a fantastic £420 for the Society.

An amazing achievement! Well done to all of the Haem Team The Haem Team completed a gruelling 250miles cycle from London to the World Federation of Hemophilia Congress in Paris and raised a staggering £8,441 for improving our information and support for people with rarer bleeding disorders. The Haem Team would like to thank everyone for their kind donations and support. The Haem Team was made up of Georgie Robinson, Gareth Stocker, Nicola Hubert, Ann Waring, Keith Gomez, Simon Davies, Christopher Parish, David Keeling, David Walters, Sam Ackroyd, Jason Mainwaring, John Hanley and Michael Laffan


Fundraising Anthony and Roger cycled from Land’s End to John O’Groats and raised £1,000 – a brilliant achievement.

Meg Ward (pictured) ran the Great North Run and raised £180. She was joined by Emma Ellis Jones who raised £265.

Jack Attwater (pictured) completed a skydive for the Society raising £704. Neil Yoxen’s sponsored skydive raised £840. Alan Bowman and Natasha Akehurst also took to the sky to raise £1,004. Thank you all.

Mark McGovern raised £195 running the Ealing Half Marathon.

Alan’s tandem skydive from 13,000ft at Beccles Heliport in Norfolk was inspired by his nephew, Isaac, who has a bleeding disorder.

Big thanks to Alex Clark and all his supporters for raising an amazing £6,037 at their Charity Golf Day in August in aid of Archie (pictured) who suffers from Severe Haemophilia.


Your letters retirement of Mark Winter as Centre Director at the Kent and Canterbury Hospital, especially as he made a huge commitment to the Society. I personally think that most of the ground work for Haemophilia treatment has been done by doctors and patients of my generation; my two grandsons, both severe Factor VIII sufferers and those who come after are the beneficiaries of the work done by professionals like Mark. Mark Winter should not be allowed to slip into our history without a mention at least in our Society’s magazine. If you print some or all of this e-mail I wish Mark, a long, happy, healthy and interesting retirement, and may his God go with him.

Making logging treatment records easy Following the Haemtrack article in the June 2012 edition of HQ, I am writing a brief letter to advise of a smart phone application of Haemtrack which has made logging my treatment very easy. The app is intuitive and easy to use and most importantly it is quick. It enables fast inputting of treatments by remembering past batch numbers and you don't even need to be connected to the internet. Data can be added and next time you are connected you can upload your treatments to the main site. I'm able to log treatments wherever I am and I can do it while the treatment is mixing. All in all this is a great tool and from conversations at my centre it appears not too many people know about it which is a shame. It can be downloaded for free from your App store, although I am not sure if it is available for Android phones yet.

With gratitude, Fred Hardy We agree with Fred; there is a full tribute to Mark Winter on page 13.

Craig Rose

Sad to see no mention of Mark Winter

If you have something to say please address your letter to The HQ Editor, The Haemophilia Society, 1st Floor, Petersham House, 57a Hatton Garden, London. EC1N 8JG Or email to

I have been a member since my father was one of those who formed the Society. I am very sad to see that no mention has been made in HQ about the


Get in touch Whom should I speak to? Have you ever wanted to talk to the Haemophilia Society about something but haven’t known who to talk to? This is your cut out and keep guide to who does what at the Haemophilia Society. For each

member of staff it will tell you what they do and how to get in touch with them. There is even a picture so you can recognise them at Haemophilia Society events!

Help us raise money: Nina Benscher - Head of Fundraising Join us or change you membership details: Tom Bradley - Membership & Administration Get help with your benefits claim: Nigel Pegram - Benefits Information Worker Wednesdays & Fridays. 10am - 3pm. 020 7269 0686 Find out about events or get information about bleeding disorders: Georgie Robinson - Information & Support Manager For the latest about our children’s activity holidays: Claire Treguer - Children & Families Officer Claim back expenses or other financial matters: Rachel Goodkin - Finance & Office Management For media, lobbying or the website: Dan Farthing - Policy & Communications Manager Alison Smith - Research 0131 557 5953

Chris James - CEO - Chris has responsibility for all of the work of the Society Unless another number is given call

020 7831 1020 39

For everyone with a bleeding disorder The Haemophilia Society 1st Floor, Petersham House, 57a Hatton Garden, London. EC1N 8JG Tel: 020 7831 1020 Fax: 020 7405 4824 Email: Freephone information and advice helpline sponsored by Verizon

0800 018 6068 If 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. 1763614 Member of the World Federation of Hemophilia Chair: Bernard Manson -

Š The Haemophilia Society Opinions expressed in HQ do not necessarily reflect those of The Haemophilia Society. We welcome non-commercial reproduction of articles on the understanding that acknowledgement is made of HQ as a source. Thanks go to the following pharmaceutical companies who are providing valuable support: Baxter Bioscience, Bayer, CSL Behring, Grifols, Novo Nordisk and Pfizer. Copies of The Haemophilia Society’s commercial funding guidelines are available on request. The content of HQ is for general information only. If you are experiencing symptoms or you are concerned about any of the issues raised in the magazine, we advise that you consult your doctor.

HQ December 2012  

The members' magazine of the UK Haemophilia Society.

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