ISSUE 2 Engaging with the bleeding disorders community in Scotland
AUGUST 2014
Registered Scottish charity: SC044298
Talking about bleeding disorders in the Scottish Parliament t some point in our A lives, 1 in 17 of us, or 7 % of the population, will be affected by a rare disease. That is over 300,000 people in Scotland - more than the population of Aberdeen! In the past, those who had uncommon conditions could have felt isolated, but Rare Diseases UK now brings such people together in order to learn from one another and add strength to campaigns. Every year, on Rare Diseases Day, we come together to put the spotlight on rarer conditions as a public health priority. We were delighted to be invited to address this year’s reception at the Scottish Parliament. Our
The event was hosted by Bob Doris MSP and was addressed by Joan Fletcher, Marion and Thomas Ferguson, Alex Neil MSP (Cabinet Secretary for Health and Wellbeing), Alastair Kent, Dan Farthing and Susan Warren. Vice-Convenor, Susan Warren, spoke extremely movingly about her own experience of bleeding disorders, and why
Haemophilia Scotland was established. Dan Farthing, our Senior Executive Officer, then advised those in attendance about what
we are doing to deliver practical support to individuals and families in Scotland affected by a bleeding disorder.
Plans unveiled for the new Edinburgh Royal Hospital for Sick Children
A computer generated image of what the new building will look like.
MANY FAMILIES in the East of Scotland will be familiar with the current Edinburgh Sick Kids Hospital, or the Royal Hospital for Sick Children to give it its proper name, as the home of children’s services at the Edinburgh Haemophilia & Thrombosis Centre. Plans have been progressing for many years now to move the hospital to Little France, where the Edinburgh Royal Infirmary and the rest of the Edinburgh Haemophilia
www.haemophiliascotland.org
& Thrombosis Centre is based. Now, Integrated Health Solutions Lothian and Brookfield Multiplex Europe have been named as preferred bidders. In May, we had a members meeting at our Edinburgh Office about the plans for (continued on page 2) THE
PENROSE INQUIRY
Telephone: 0131 524 7286 ~ EMAIL: hello@haemophiliascotland.org
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Contact details ~ New Children’s Hospital
New Royal Hospital for Sick Children
CHAIRMAN: BILL WRIGHT bill@haemophiliascotland.org 077855510456 SENIOR EXECUTIVE OFFICER: Dan Farthing hello@haemophiliascotland.org 07930 316190 PARENT MENTOR COORDINATOR: Jen Breen mentor@haemophiliascotland.org 0792 609 6743
NEWSLETTER EDITOR: Hugh MacInnes hugh@haemophiliascotland.org Tel: 01851 810262 07787317936
(continued from front page)
the new Royal Hospital for Sick Children in Edinburgh. The hospital is moving from its current home by the Meadows to join the Edinburgh Royal Infirmary on the Little France Campus. The meeting was attended by a representative from the project board, which enabled us to obtain lots of useful information and gave us a chance to ask questions about the project. The hospital is being built with a mix of public and private money which, unlike PFI, will work like a mortgage: the NHS will own the hospital when their payments finish in 25 years time. If the final planning permission is granted, then construction of the new hospital will commence in October 2014, and is expected to open in the summer of 2017. Unfortunately, this means that there will still be charges for car parking. There are still 28 years on the parking contract. However, it is a defined benefit contract, which means that no more money should be raised from the charges, overall, despite the fact there will be more spaces on site. The final design is almost complete and aims to make lots of use of courtyards because many people have said that they will miss being able to escape over to the Meadows. Additionally, the old petrol station on the edge of the site has been purchased to improve the landscaping. You can see what it will look like by watching the “Fly Through” on the NHS Lothian website:- http://www.nhslothian.scot.nhs.uk/GoingToHospital/Locations/ RHSCDCNRIECampusWorks/Pages/FlyThroughVideo.aspx As many rooms as possible will be single occupancy, and all are big enough for an adult. There is a new 33 bedroom family hotel which more than replaces PJ’s Loft. There will also be classrooms for the first time, which will help children to keep learning if they are in hospital for a long time. It will also be much easier to navigate your way around the hospital than the current building, and there will also be very clear signage. The ward that will be used by people with bleeding disorders has flat access to the family hotel and is by an accessible terrace. Parents who attended our meeting in May, at which a representative from the project board was present, enquired about a number of relevant issues relating to the new Royal Hospital for Sick Children in Edinburgh: Q 1: Will there be low hand washing sinks for children?
CONTRIBUTORS THIS ISSUE:
A 1: The cost of doing this throughout the hospital has proved prohibitive and in discussion with other new hospitals they have also not done this for the same reasons.
Bill Wright Susan Warren Dan Farthing Hugh MacInnes Susan Hook Jen Breen
Q 2: Will there be toilet seats that work for both children and adults, as well as smaller toilets? A 2: The toilets will have the option of different seats to address this issue. Q 3: Will there be coat hooks in the ward and rooms to avoid having to put things on the floor or on beds? A 3: There are coat hooks scheduled in both of these areas. Q 4: Will there be enough toilets for parents?
CONTACT DETAILS:
A 4: There are a “phenomenal” amount of toilets. So this shouldn’t be a problem.
HAEMOPHILIA SCOTLAND
Q 5: Will there be places where parents can get food and drink at all times of the day and night?
4th Floor, Hayweight House 23 Lauriston Street Edinburgh EH3 9DQ haemophiliascotland.org hello@haemophiliascotland.org TEL: 0131 524 7286 If you would like further information on Haemophilia Scotland, or are interested in becoming a member, please contact us at the above address.
A 5: There will be a restaurant, but this won’t be open all the time. There are several sites earmarked for ‘Grab and Go’ sandwich concessions. However, these will need to be commercially viable, so it is not yet clear how many there will end up being. Apart from that, there will be vending machines.
I
f you have your own questions regarding the new kids hospital, please let Dan in the Haemophilia Scotland office know and he will pass them on for an answer. If you would like to get involved in the design and build, then there are two groups you might like to join: Family Council at the Royal Hospital for Sick Children. Contact Denise Claxton at the Royal Hospital for Sick Children, 9 Sciennes Road, Edinburgh, EH9 1LF. Email denise.claxton@ luht.scot.nhs.uk or telephone 0131 536 0068. Young People’s Advisory Group (YPAG) at the Royal Hospital for Sick Children. Contact Helen Taylor at the Royal Hospital for Sick Children, 9 Sciennes Road, Edinburgh, EH9 1LF. Email helen.taylor@luht.scot.nhs.uk or visit: http://www.nhslothian.scot.nhs.uk/ GoingToHospital/Locations/RHSC/AdvisoryBoard/Pages/default.aspx 2
Chairman’s Welcome
WELCOME to the second edition of the Haemophilia Scotland newsletter, The Wire Bill Wright, Chairman
HAEMOPHILIA SCOTLAND AT HOME It is still hard to believe that less than 18 months after making the decision to set up a new ‘independent’ Scottish based haemophilia organisation for people in Scotland with
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HAEMOPHILIA A SCOTLAND
PENROSE: FURTHER HOLD-UPS We are extremely disappointed by the Penrose Inquiry team’s announcement of further delays, with a publication date for the
HAEMOPHILIA SCOTLAND ON THE WORLD STAGE Perhaps the greatest success we have had in recent months has been putting Haemophilia Scotland very much in the minds of other haemophilia organisations across the world. This was largely thanks to the attendance of our very own Dan Farthing and Susan Warren, who did a fantastic job for us during a very hectic week in Melbourne. Melbourne was the venue for the World Haemophilia Congress, which of course is coming to Glasgow in 2018; with Susan and Dan firmly establishing our profile with other bleeding disorder organisations on the European and global stage. Our peers in other parts of the world were very complimentary about the work we are currently doing here in Scotland, although we are certainly not resting on our laurels and realise that there is still much to do. In turn, we have gained much wisdom and information from our attendance at the Congress in Melbourne, which has been reported on by Dan and is now available on our web-site. It is vital that when we gain new information and knowledge, we share it as widely as possible. If anyone requires additional information that is not available on the website, please contact Dan, who will be happy to assist (contact details on page 2).
bleeding disorders, we are where we are now. At that time, we had no money, no members, no office, no staff, no budget, no charitable status, no policies and no website. However, thanks to the efforts of my colleagues Susan, Carolyn, Lynn, Margaret, Hugh, Ken, and previously George, Kay and Paul as trustees, along with support from many of you and the Haemophilia Centres, we now have all of that in place. Additionally, with Dan heading up our professional drive from the office; a new Trustee, Nikki, joining us; Jen managing the parent mentoring initiative; Angela volunteering on a Friday in the office, Nina working on the women’s project; and potentially further services and staff to come, our decision to establish Haemophilia Scotland now appears fully justified. The range and level of work we are involved in, as partly covered in the rest of our newsletter and on our website, hopefully testifies to that. In a letter received prior to the recent WFH event in Melbourne, Alex Neil MSP, the Cabinet Secretary for Health and Wellbeing, confirmed: “I, and the Scottish Government, recognise Haemophilia Scotland as the representative organisation in Scotland for people with bleeding disorders and have been delighted to have been able to support your work.” I never spoke for any length to Davey Bisset about the Independence Referendum, but I know for a fact he always wanted a Scottish based organisation serving those in Scotland with bleeding disorders. He did more than just smile about Haemophilia Scotland when I last saw him.
HAEMOPHILIA A SCOTLAND
FAMILIES AND PARENT MENTORING Despite these gloomy days, there are good things happening (as Dave Bisset would have wished). They include the work we are doing on the Parent Mentoring Pilot Project. A very willing and able group of mentors have come forward and undertaken an intense training day. The mentoring skills they have acquired, combined with their experience of living with a bleeding disorder, means that they are now in a good position to assist newly diagnosed families and others families who are looking for a bit of peer support, or simply someone to chat to who understands the condition and can offer some down-to-earth advice. If you feel you might benefit from a chat about how this opportunity might benefit you and your family, please do get in touch with our parent mentoring co-
ordinator, Jen, whose contact details are on page 2.
HAEMOPHILIA A SCOTLAND
DAVE BISSET – A MAN WHO GAVE US FOND MEMORIES The shock news in April of the passing of Dave Bisset, one of the great advocates for people in Scotland with haemophilia, was a real blow to all of us who had the privilege to know him. The last time I had seen him, we shared a journey back to Perth from a meeting in Glasgow and his outlook was positive (and decidedly humorous). I had first met him getting on for 20 years ago, and he always remained forwardlooking despite everything he and his wider family had been through. He appeared as well and healthy as he had done for years. His funeral was a great tribute – I had forgotten how big an Elvis fan he was.
HAEMOPHILIA A SCOTLAND
THE ‘I’ WORD As Scotland embarks on a summer of Homecoming, Commonwealth Games, Ryder Cup and our vote on Independence from the rest of the UK, I come personally with very mixed spirits on matters even closer to home. I suspect they will be shared by many with bleeding disorders. Sadness, loss and disappointment remain with us, but also make us more determined to ensure there is a better hand of cards in Scotland for those with bleeding disorders. Indeed, we have recently been successful in sharing that determination and optimism with quite literally the rest of the haemophilia world.
Report still unconfirmed. We appreciate that the latest hold-up is partly explained by personal tragedy; and we offer Lord Penrose our sincere condolences on the recent loss of his wife. However, other factors, particularly legal considerations, have added significantly to the delays. This has left the haemophilia community increasingly frustrated and anxious for an imminent conclusion to the Inquiry. A firm date for publication of the final report is now required. The Chairman himself stated on 29 October 2012: “Time is as important as expense. I have to complete this Inquiry, I have to and I cannot without very good reason indulge in an extension of the exercise for another year, 18 months or whatever. I cannot do it and I will not do it”.
All the best, Bill
Civic Reception for World Haemophilia Day
Provost of Inverness hosts civic reception for World Haemophilia Day HAEMOPHILIA SCOTLAND is grateful and honoured that Inverness Provost, Alex Graham, hosted a Civic Reception at the city’s historic Old Town House to mark World Haemophilia Day. Although World Haemophilia Day is always on 17th April, we held the Civic Reception on the 19th to allow those who attended
dramatize the contaminated blood disaster in a new play called ‘Factor 9’. The Provost spoke eloquently about the importance of World Haemophilia Day and the work of Haemophilia Scotland, and offered some background to our historic surroundings. Our Chairman, Bill Wright, responded with our thanks to the Provost, but also highlighted the situation for the majority of people with bleeding disorders around the world. The theme of World Haemophilia Day this year ‘Speak Bruce Norval thanks Joseph Peaty for travelling up from was Out: Create England to represent the campaigning group Tainted Change’. Bill Blood at the event. pointed out to combine the event with a that this had been done trip to the theatre. Inverness very effectively through the based production company, play. Bruce Norval, whose Dogstar, has collaborated personal testimony was used with two Scottish people to write the play, then led a with Haemophilia to round of applause to the
ABOVE: Our Chairman, Bill Wright; Bruce Norval, inspiration behind the play; and Councillor Alex Graham, Provost of Inverness, all addressed the Civic Reception. BELOW: The Inverness Town Hall was an impressive backdrop to the meeting.
actors, writer and everyone involved in the production. He spoke movingly about the importance of the contaminated blood story being more widely known. The play itself more than lived up to expectations. The sheer emotional power of the script and performances led to an electric atmosphere in the Eden Court Theatre. Nobody who sees the production can fail to be deeply moved and leave the theatre deep in thought.
Bruce Norval, Andy Gunn and Susan Warren discuss the history of the contaminated blood campaign. 4
A current campaign on the crowd funding website, Kickstarter, is very successfully raising funds to bring the play to the world famous Edinburgh Fringe in August. Every penny pledged will allow this important play to be seen by a wider audience. Haemophilia Scotland has donated £532 to the campaign – that’s £1 for each of the 532 people with bleeding disorders in Scotland who were infected in the contaminated blood disaster.
Parent Mentoring ~ New HQ ~ Telephone Review Services in Edinburgh
Positive feedback on pilot mentoring project The mentoring project is going from strength to strength! The mentoring pilot in May extended its support to all areas of Scotland. Haemophilia Scotland are now working with Treatment Centres in Glasgow, Edinburgh, Aberdeen, Dundee and Inverness. So, look out for our leaflets and posters and get in touch! Our six mentors can catch up with families from all over the Jen Breen, Haemophilia Scotland’s country, either face-to-face or Parent Mentor Coordinator using phone, email, Skype or Facetime to share experiences and chat about living with haemophilia. So far, our mentors are meeting three families in the Central Belt of Scotland, and it has been so gratifying to be a part of supporting families within the bleeding disorder community, who may otherwise have felt isolated when dealing with the challenges that a bleeding disorder can bring. All feedback has been extremely positive, and we wish to continue to create an even more supportive and inclusive community.
by Jen Breen
HAEMOPHILIA SCOTLAND’S Parent Mentoring Project has arranged two family events: Tayside Social Event: We organised a social event at Monifieth Farm on the 12th July 2014 where members of the bleeding orders community living in the Tayside, Angus and Fife area had an opportunity to chat to other families and meet our mentors. Edinburgh Event at Ratho: Haemophilia Scotland has also been invited to attend the Ratho Climbing Centre Day Out on the 31st July 2014. The Centre has Europe’s largest indoor climbing arena, and a multitude of familyfriendly facilities, including the ‘Rock Tots playroom or the Scrambles softplay area’. Hope to see you there!
For more information and to find out more about our mentoring service, please visit our website: http://haemophiliascotland.org/support/parent-mentoring-project/
Parent Mentoring Initiative
Telephone Review Services Piloted at Edinburgh Centre by Susan Hook, Edinburgh Haemophilia
New office New opportunities
CENTRES are facing the growing pressure of increased patient numbers, which is causing problems with clinics becoming overbooked and patients having to wait for appointments. There is also the element of patients not attending planned appointments and the appointment slot being wasted. In Edinburgh, this has been causing concern for some time, and as part of a Senior Clinical Review the idea of setting up a telephone review clinic was discussed, and that initiative has now been implemented. For patients who attend annually and have milder conditions, a system of telephone review by the nurse specialists has commenced. The consultant in charge
T
he sharp eyes amongst you will have noticed that we have moved offices. While the desk with the Scottish Council for Voluntary Organisations (SCVO) at the Mansfield Traquair Centre was very good, the offer of new facilities was too good to miss. We are now in the new SCVO offices on the 4th Floor of Hayweight House, 23 Lauriston Street, Edinburgh. EH3 9DQ. As well as a better view and improved access to meeting rooms, the most important thing about the new office is that we now have room for volunteers! Haemophilia Scotland is your organisation, and it is fantastic that we now have somewhere where members can come in and work on projects with us. We already have two volunteers who are helping us with our internal policies and developing a new women’s project. However, there is still plenty of space and lots to do. So, if you have your own idea for a project, or would like to help us with fundraising, media or even producing the next edition of The Wire, then please get in touch. We’d love to hear from you. 5
and Thrombosis Centre of a patient’s care will discuss with the relevant patient the possibility of setting up a review over the telephone, thereby avoiding the need to attend hospital. Consent is obtained and a proforma completed. At the time of the next review, the nurse contacts the patient to arrange a suitable time to call, with telephone reviews generally taking about 20 minutes. All relevant information is then brought to the consultant’s attention and an action/treatment plan is made, if required. It is hoped that this new approach will benefit patients by not having to take time to attend the hospital, while also freeing up clinic time for those patients who may need to be seen more frequently by clinicians and medical staff.
Penrose ~ SIBF Scoping Exercise
SIBF to conduct a Scoping Exercise into contaminated blood disaster
THE
PENROSE INQUIRY
At the Haemophilia Scotland Scottish Parliamentary Reception in April 2013, Alex Neil MSP announced that he had asked our friends at the Scottish Infected Blood Forum to conduct a scoping exercise to examine the support needs of people affected by the contaminated blood disaster. Since then our Chair, Bill Wright, has served with a number of other representatives on a Steering Group that developed an extensive survey, which has now been released.
Final Report expected in the Autumn On the last day of May this year the Penrose Inquiry made the following statement. “On behalf of Lord Penrose, I can report that good progress is being made in relation to the warning letters associated with the Final Report. Three batches have been issued. However, the process is not yet concluded. Two further batches of letters have still to be issued. Subject to the team progressing with the warning letter process at the anticipated rate, the Final Report will be published in the autumn of this year. A date for publication will be announced when the warning letters process is complete.” We have become increasingly exasperated by this interminable process and see this announcement as yet another delay. There can be few communities with such a strong collective understanding of the impact of the death of a partner, and Lord Penrose continues
to have our personal sympathy. However, that understanding cannot remove the frustration of seeing people affected by the contaminated blood disaster literally die waiting for the report to be published. We have written to Alex Neil MSP, Cabinet Secretary for Health and Wellbeing, to make the views of the community known, and asked for an urgent meeting. We have also written to the Inquiry directly, asking the detailed questions that were raised in the Penrose Session at our Gathering Conference and AGM held in Stirling on 29 & 30 March. In particular, we have asked for more details about timing, the use of the “I do not recall” response in oral hearing, and the status of warning letters. We will publish any responses we receive on www.haemophiliascotland. org. If you don’t have access to the internet please call me on 0131 524 7286 for updates.
The objectives for the Scoping Exercise are: • To identify and engage with people who have been infected or affected with Hep C through contaminated NHS treatment, and to do so in an empathetic manner, • To assess the need for various supports, in particular by identifying any current gaps in provision leading to unmet need, and • To understand how people would prefer to be supported to best meet their own needs. The Scottish Government have also said that they will use the results of the scoping exercise as part of the review of the financial support arrangements they will conduct after the Final Report of the Penrose Inquiry is published in the autumn. If you have access to the internet, you can complete the survey online by going to https://www.surveymonkey. com/s/HepC-Scoping-Exercise. If not, then please call me on 0131 524 7286 and I will be happy to send you a copy. The survey is for everyone affected by the disaster. So, please make sure everyone in your household knows about it, and they can decide for themselves whether or not to take part. We know that when many people were infected, the damage that was done to their partners, parents, children and siblings is still being felt today.
Concern over reported £11.7m cost of Penrose “I have campaigned on this issue for years and I now just want a final response so I can get on with what is left of my life.” Dan Farthing, our Senior Executive Officer, said: “It would have been inexcusable if Lord Penrose had cut corners to keep costs down. An inquiry on the cheap which answered none of the big questions would be worse than no inquiry at all.” The Scotsman piece also states that Haemophilia Scotland campaigned for the Penrose Inquiry. However, while many of our members were vociferous campaigners for a Public Inquiry, Haemophilia Scotland itself did not exist as an independent organisation until after the Inquiry had begun. The Inquiry was secured largely through the tireless efforts of individual campaigners in Scotland. Philip Dolan, Bruce Norval, Robert and Alice Mackie, as well as Andy Gunn can claim the lion share of the credit, along with many others.
A recent Freedom of Information request by The Scotsman reveals that by the time it reports the Penrose Inquiry is expected to have cost £11.7 million. The Scottish Government originally set aside £3m to cover the costs of the Inquiry between 2008 and 2011, although funding was subsequently adjusted each month to reflect actual costs. Although the apparent costs of the Inquiry have raised some concern, the general consensus appears to remain very supportive across the political spectrum. Scottish Labour’s health spokesman, Neil Findlay, is reported stating: “This has been a complicated inquiry. It’s right that it provides a detailed and in-depth analysis on what happened so that nothing like it can ever occur again. But it’s now been ongoing for six years and the victims and their families need to know the final conclusions of the report.” Bruce Norval was quoted in The Scotsman article, saying: 6
World Fed Conference, Melbourne 2014
World Federation of Hemophilia World Congress 2014 Melbourne, Australia 11- 15 May THE OTHER SIDE OF THE WORLD is a long way to go for a 5 day congress, but over 4,000 delegates from 129 countries decided it was worth the trip. The biannual congress is the largest international meeting for people with a bleeding disorder, haemophilia centre staff, scientists, patient organisations, pharmaceuticals etc. The congress is not only about gaining knowledge of cutting-edge scientific research, clinical trials and advances in treatment products and clinical care. It’s also about sharing insights, exchanging information and collaborating with stakeholders. The Melbourne Exhibition Centre itself was a fantastic venue for the Congress. The centre is massive, and delegates certainly had plenty of exercise walking from session to session. The Exhibition Centre was buzzing with expectation during the opening ceremony, where we were treated to a demonstration of Aboriginal music, song and dance complete with the haunting sound of a didgeridoo. The Congress was opened by WFH Patron Jan Willem Andre de la Porte, Congress President Gavin Finklestein and WFH President Alain Weill who spoke of future goals for the community and a hope of eliminating the gap in treatment between developed and developing countries. Afterwards there was a chance to meet other delegates and volunteers in the large foyer with wine and canapes. I was impressed by how easy it was to spot old friends from other NMOs as well as my own sister-in-law who lives in Melbourne and was one of the 75 volunteers at the congress. Early the next morning, it was down to business. With 18 concurrent sessions plus 2 plenary sessions each day running from 8am to 8pm there was an overwhelming choice of what to attend, but Dan and I co-ordinated what we would attend hoping to cover as many topics as possible between us, with Dan reporting on sessions on our website while I posted on Facebook. Here is a flavour of what was on offer: Genomics of Bleeding Disorders, NonAdherence, Management with no or little clotting Factor Concentrate, Back
by Susan Warren
NMOs voting at WFH Assembly to Basics (a muscoskeletal session), Clinically-focussed Care, outcome assessments and clinical trial issues, WFH Broad Perspectives for a new era and Primary Hemostasis - AND that’s only one day’s offerings up to 12 noon - lunchtime! It’s not possible for me to do justice to any of the sessions here, but if anyone is interested in looking at the full programme and a selection of presentations see the WFH Congress Portal (http://wfhcongressdaily.org), our website and Facebook page. Another feature of the Congress is the poster exhibition area with hundreds of posters changed daily on a range of issues such as aeging, carrier issues, clinical trials, factor concentrates, inhibitors, laboratory issues, mild haemophilia, to name but a few. The Congress also offers the chance to have individual meetings with WFH staff. We met to discuss our membership of the WFH (only one NMO per country can be a member and the UK is one country) and the possibility of working with Malawi where haemophilia cannot even be diagnosed. We were also invited to take part in a Europe-wide meeting when the European Haemophilia Consortium (EHC) updated us on their work and as observers of the WFH Assembly . For me, the highlight of the congress was about meeting people like myself living with a bleeding disorder and sharing our stories. After a session entitled Women’s Sexuality, where 3 excellent speakers discussed 7
issues regarding females with bleeding disorders, particularly gynaecological problems women with bleeding disorders are faced with and how to deal with such problems, I attended a lively women’s networking event at the WFH Resource Centre. The first time I’ve experience meeting so many women with a bleeding disorder. There I met a young woman, with a type of Von Willebrands found commonly in Tasmania, who lives close to my husband’s parents. To round off a truly inspiring 5 days, there was a farewell dinner and dance. It never ceases to amaze me how a dance floor can fill immediately when the music starts at a bleeding disorder event. I bet there was a queue at the treatment centre the next morning. So, was being stuck in an aeroplane for 24 hours worth it? You bet - I would highly recommend attending the next WFH Congress to anyone. Start saving for Orlando, USA in two years time. Haemophilia Scotland are grateful to Baxter Health Care for sponsoring the attendance of Susan Warren and Dan Farthing at the Congress. Translation facilities enabled delegates from around the world to fully engage in Congress business
The Gathering - March 2014
Haemophilia Scotland: The Gathering Stirling Management Centre ~ 29/30 March 2014
O
n the weekend of 29 and 30 March, sixty-five people from all over Scotland convened at the Stirling Management Centre for our ‘Gathering II – Help Yourself event’. People with bleeding disorders of all ages not only heard about the latest thinking in psychosocial support, dentistry and data collection, but also took part in group discussions on a range of subjects, from relaxation techniques to sharing tips on bringing up children with a bleeding disorder. There were also some social activities, including a general knowledge quiz and energetic ceilidh dancing in the evening, with plenty of laughter all round. At the inaugural Haemophilia Scotland AGM, the current board was formally elected for the first time; having been appointed for our first year to launch and set up the organisation, including obtaining charitable status. So the management committee are delighted to have had this vote of confidence from our members. We are extremely grateful to Pfzier Ltd and Bayer Healthcare for their
generous support, which made The Gathering possible. We would also like to thank all our speakers and special guests who helped make the event such an enormous success. We were also fortunate to be able to work with Stirling Play Services, who made sure our younger members had plenty to do – in fact they gave us some of our best feedback!
LEFT: Anne Duffy - Irish Haemophilia Society Counsellor - offers her perspective on haemophilia care during a Q&A session. Attendees at the Gathering listened attentively to Ann as she outlined the benefits of a Psycho Social approach in haemophilia care. ABOVE: Haemophilia Scotland Chair Bill Wright addresses those present.
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BELFAST 3-5 October
EHC Conference, Belfast ~ Blogging ~ New HCV treatment
The European Haemophilia Consortium (EHC) brings patients and patient organisations together from 44 European countries to discuss the issues that affect the bleeding disorders community, in a spirit of friendship and a desire to improve the lives and treatment of those affected. Every year on the first weekend in October, the EHC runs their flagship conference and, fortunately for us in Scotland, this year the 2014 EHC Conference will be held close to home in Belfast, Northern Ireland. Gordon Clarke, who some Haemophilia Scotland members will know, has been working hard with the EHC team to put together what will be an excellent event. The Conference Programme includes sessions on Mild & Moderate Haemophilia, as well as an update on Hepatitis C and its treatment. Delegates will also be able to hear about the role of Physiotherapy in bleeding disorders and learn about the latest thinking on reproductive and genetic issues. However, it need not all be work as delegates will have opportunities for leisure time, such as a visit to the magnificent Titanic Belfast visitor attraction and, of course, the conference’s gala dinner. Anyone who followed our web reports live from the World Federation of Haemophilia Congress in Melbourne in May will know how interesting and valuable these international events can be. This is a great chance for many in Scotland and the rest of the UK to attend this international event in person, find out more about bleeding disorders and meet people from all over Europe who all have a mutual desire to improve the situation of all affected by the condition.
Sofosbuvir may offer alternative to interferon in HCV treatment
T
he medical maxim, ‘The cure is worse than the disease’ will be appreciated by many people who contracted Hepatitis C Virus (HCV), and then went on to suffer severe side effects from prescribed interferon treatment. Despite it occurring naturally as a protein within the body and forming an essential part of one’s immune system, when interferon is administered in concentrated form as an injection it can cause a number of debilitating side effects that can subsequently lead to the treatment being withdrawn. Up until now, pegylated interferon has been one of the few effective treatments for HCV, particularly when used in combination with the oral antiviral drug Ribavairin, which prevents the hepatitis C virus from spreading within the body. However, the difficulties many have experienced with interferon means that the search has been on for a safe and more tolerable alternative, which has recently resulted in the development of a new drug called sofosbuvir (branded as Sovaldi) by American biopharmaceutical company Gilead Sciences Inc. Following the lead of the US Food and Drinks Administration (FDA), the European Commission approved Sovaldi in January 2014, and it was launched in the UK, France and Germany as the first of a new generation of drugs currently being developed to treat hepatitis. Importantly, Sovaldi is also the first drug that has demonstrated safety and efficacy in the treatment of certain types of HCV infection without the need for co-administration of interferon. In November 2013, the American FDA also approved simeprevir (branded as Olysio) after delivering similarly positive test results, further demonstrating the significant progress that is being made in developing less toxic drugs for treating HCV. The introduction of new antiviral drugs that have significantly fewer side effects associated with them than interferon is to be welcomed. However, it is important to note that prospective treatment with these new drugs is very much dependent on the particular circumstances of individuals. As such, clinicians will take into account genotype, whether the person has been through treatment before, and the condition of the liver before sofosbuvir is prescribed. As further information on these drugs and their application in Scotland become available, we will publish this on our website. It is estimated that there are currently over 200,000 people in the UK infected with hepatitis.
Sharing experiences through blogging
M
ore and more people all over the world are writing blogs about their day-to-day experience of living with a bleeding disorder. We thought it would be useful to collect some of them together on our website. These personal blogs have been produced by individuals and families around the world who wish to share their experiences. Some will be familiar to many of us, while others will be unique to individual contributors.
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However, Haemophilia Scotland cannot be responsible for the content of such external sites. Before taking up any suggestions about managing your bleeding disorder that you may find on websites, including ours, we would advise you discuss it with your Haemophilia Centre. You will find blogs relating to the bleeding disorders community on our website at: http://haemophiliascotland. org/support/real-life-stories/
Be organised and enjoy travel
Top 10 Travel Tips Having a bleeding disorder need not be a major barrier to travel - though being organised is advisable
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ith improved transport and treatment, today many people with bleeding disorders are able to travel internationally on a regular basis. Essentially, these travellers advise that by being organised their bleeding disorder rarely causes them a problem. The following tips are based on the advice offered by the World Federation of Hemophilia (WFH).
5. Carry a letter from your treating doctor with information about your bleeding condition, any bloodborne viruses you may have, and the usual treatment you receive. This letter should, if possible, be in the language of the country being visited. You may not always be able to treat yourself, so this information is important. Again, the WFH have a very good sample letter.
1. Wear medical identification information. There are now a wide range of options to do this. Many people carry the patient cards issued by their Haemophilia Centre and UKHCDO. Sometimes, an identification bracelet can be useful. The most well known company is MedicAlert, who have a very wide range of choice these days.
6. Carry a letter to present to customs, if requested, to explain why you are carrying treatment products, prescribed drugs, needles, and syringes. Again, this letter should be in the language of the country being visited. You can find the WFH sample letter for customs on the Haemophilia Scotland website.
2. Always carry your own treatment products, treatment equipment and pharmaceutical drugs with you, as products will be different and probably very expensive in another country. Most countries also have only limited supplies and cannot be expected to give products reserved for their own people to travellers.
7. The UK Government travel advice website provides lots of useful information about the county you are intending to visit, including visa requirements. You should check it well in advance of travel. 8. Medical/Travel insurance should be checked well in advance of departure. You may need extra time to deal with pre-existing conditions. Have a look at our list of insurance companies who have provided travel insurance to other members of Haemophilia Scotland.
3. Carry a letter for security staff at your port of exit or entry, explaining why you are carrying treatment products, prescribed drugs, needles, syringes, etc, and the serious implications of not having them immediately to hand. The WFH sample letter is a very good place to start. 4. When travelling by air, always carry your own treatment products, treatment equipment, and pharmaceutical drugs onboard the aircraft as hand baggage. This will allow you to present them quickly to security and customs, if requested. There are risks of loss, breakage, and of temperature variations potentially affecting treatment products if stowed in the aircraft hold.
TIP 4: Carry your treatment products and equipment aboard aircraft as hand baggage
9. If you are travelling in the EU or Iceland, Lichtenstein, Norway and Switzerland then you should also make sure you are carrying a European Health Insurance Card. There is also an accompanying smartphone app which will help you make the most of the card. Remember, having the card doesn’t mean that you don’t need travel insurance; most people will need both. EU legislation also means that if you have reduced mobility you have access, assistance and information rights when you travel. 10. You may wish to write in advance to hemophilia centres in the country or countries you are visiting to enquire about the availability of treatment products and medical expenses that may be incurred for treatment. If you need treatment while travelling, telephone the treatment centre, using the numbers listed in the WFH’s Global Treatment Centre Directory, before seeking treatment. National hemophilia organizations can also be a source of assistance if needed while travelling. These are also listed in the Global Treatment Centre Directory.
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Products change ~ New start-up ~ dentistry charges
Did you change products in April? THE SCOTTISH GOVERNMENT has responsibility for the purchase of clotting factor products for Scottish Haemophilia Centres. However, in recent years the decision has been taken to join with the rest of the UK’s tender process - the logic being that, as with many things, the more you buy of something, the less you have to pay for it. There are strict entry requirements to the tendering process, meaning that only high quality treatments that can demonstrate safety and efficacy can go forward. However, following these considerations, the decision on purchasing clotting factor is largely based on price. In April this year, some people were asked to switch products so that, overall, we use enough of the products that were successful
in the tender. Ultimately, it is a decision for you, in consultation with your Haemophilia Centre, which product you take. We know that many agreed to switch products and, therefore, we would be very interested in hearing from people who changed their product at this time, and how they now feel about that decision. If you were affected by this change of product, do you believe you were given enough information beforehand? Was it easy to learn how to use the new kit? Is there anything that could have been done better? Ultimately, we would like to see some of our members involved at a Scottish or UK level when these decisions are taken; Haemophilia Scotland will keep pushing for that.
HAEMOPHILIA SCOTLAND would like to see more weight given to some of the issues we know matter to our members. In this respect, we believe that the tender process should take account of the following: •
What range of vial sizes are available?
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How easy is it to make up and infuse the treatment?
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How sensible is the packaging?
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Is the product easy and safe to travel with?
Exciting Scottish based biopharmaceutical start-up ProFactor Pharma Ltd (PFP) is an exciting new biopharmaceutical startup working on producing recombinant clotting factor products, right here in Scotland. The company was set up in 2012 with the aim of using the very latest techniques and technologies to produce a variety of recombinant clotting factor products, starting with a Factor VIII product (rFVIII). They hope that their new Chinese Hamster Ovary cell line will express the molecule far more efficiently than other lines and that new manufacturing processes will keep costs down. Their aim is to produce a product that can increase supply to emerging markets, such as Central and Eastern Europe, and drastically improve patient care. While they are getting very encouraging results, their product will have to pass a range of toxicology tests and clinical trials before it comes to market. However, if everything runs smoothly then there could be a new Scottish product on the market by the time the World Federation of Hemophilia (WFH) Congress comes to Glasgow in 2018. Although the Scottish Government is supporting the venture through Scottish Enterprise, PFP tell us that securing all the necessary investment is a much bigger challenge than overcoming the technological obstacles. So, if you happen to have a few million pounds burning a hole in your pocket, they’d be delighted to hear from you.
Introduction of Community Dentistry Charges Haemophilia Scotland takes up issue with National Services Division on behalf of members
P “Charging is a false economy”
hilip Dolan, known to many of you as the Chair of The Haemophilia Society’s West of Scotland Group and Chair of the Scottish Infected Blood Forum, was first to identify that some people, especially in the West, were facing charges for routine dentistry which they had previously been receiving for free. We have taken this issue up with National Services Division who are making representations on our behalf to the Chief Medical Officer. It appears that different systems of charging have been in operation in different parts of Scotland. New steps to standardise care have highlighted the issue, which means that charges are being introduced for many of our members.
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Haemophilia Scotland’s position is that charging is a false economy as any deterioration in the oral health of people with bleeding disorders runs the risk of increasing the demand for clotting factor products in the future. Any saving could be quickly wiped out if more people need cover for tooth extractions or other dental interventions. We also believe that financial considerations should not be placed ahead of providing the best possible treatment and care. We will keep campaigning on this issue and, in the meantime, suggest that members keep any payment receipts for routine dental work in case we can get the policy changed.
The Gathering II Stirling Management Centre 29 & 30 March 2014 ~ see page 8
DIARY DATES 2014 • EHC Conference (Belfast). Early Bird Discount ~ Ends July 25, 2014. • World Hepatitis Day. July 27, 2014 – July 29, 2014. St Enoch's Square, Glasgow. • Bayer HealthCare's Function Scotland Event. July 31, 2014 at 9:45 am – 2:00 pm. Edinburgh International Climbing Arena. • Factor 9 playing at the Edinburgh Fringe. August 1, 2014 – August 25, 2014. Summerhall, Edinburgh. https://www.edfringe.com/whats-on/theatre/factor-9 • NSD / Haemophilia Centres Meeting. September 22, 2014 at 10:00 am – 12:00 pm. • European Haemophilia Consortium Conference - BelfastOctober 3, 2014 – October 6, 2014. • Meeting with Scottish Centre Directors. November 14, 2014. • World AIDS Day. December 1, 2014.
4th Floor, Hayweight House 23 Lauriston Street Edinburgh EH3 9DQ haemophiliascotland.org hello@haemophiliascotland.org 0131 524 7286 ~ 07930 316190 12