11th October 2014 was our children and family day at Amazonia M&D’s
Families affected by bleeding disorders from all over Scotland took the chance to come together and get to know each other a bit better. We wanted to introduce families to our Parent Mentors who have given their time to share their experiences with others. Sandra MacLaren and Steven Gladstone shared their personal family experiences and promoted a ‘CAN DO’ attitude to bleeding conditions as well as any other challenges that life throws at us. Roddy from Over The Wall invited us to take a look at their charitable activity camp with fun for all age groups and all members of the family.
Parents shared ideas of what was needed in Scotland in terms of improving support services. Suggestions such as child play support including for siblings affected by Haemophilia were noted, research into the use of ports, further information of fun activities, holidays abroad and holiday insurance will all be explored further.
The children had lots of fun at Amazonia and were very brave when it came to handling the reptiles! It also looks like some made a friend or two!
Youth-led Strategies for Engagement Workshop at EHC 2014
Two questions were asked the panel of six:
Question 1 – How do you involve youths on a youth committee?
Question 2 – What is youth appropriate communication?
The panelists had wide and opposing views on both questions. Comments were taken from the group from people who had experience of being involved in youth activities in their home countries Haemophilia association.
My conclusion is that youths should be involved on the Main committee and the way to engage people is to have events from cradle to grave. Those youths who came to Berlin with us (you know who are) amazingly are now engaged in either running events for younger people, working in an haemophilia related occupation or advocating on behalf of other by speaking in Parliament. At the time I would never have thought that would happen. I like what the Irish Haemophilia Society do – they offer Educational Grants and like the Godfather, they come looking for you later 🙂
Overwhelmingly the workshop felt Facebook was the way to engage with youth. However, privacy issues online is very important. That’s why we have a closed Haemophilia Scotland Members Group.
What do you think? How do we engage young people to be part of a committee? What is the most appropriate way to communicate with young people?
Factor 9 – Summerhall
During the Penrose Inquiry the patient interest was ably represented by a small team of lawyers. We were delighted that some of them were able to join us to see Factor 9 at the Edinburgh Fringe.
Simon, Laura-Anne and Lynn (pictured) all worked incredibly hard to really understand how the disaster had affected people and what we want we needed the Inquiry to hear. It was fascinating to discuss how the play highlights important elements of the contaminated blood story with them.
The play received great reviews and astounded audiences. The intimate space really added to the impact of what is already a very powerful piece of theatre.
In July 2014 Bayer Healthcare ran an event at the Edinburgh International Climbing Arena (EICA) for families affected by Bleeding Disorders.
People travelled from all over Scotland learn about everything from keeping joints and muscles healthy to how to self-infuse. There was soft play for the youngest children to give their parents a chance to chat and get to know each other better. We were there on the day to help out and meet as many people as possible. We were please to sign up new members on the day as well as speak to lots of people who were interested in being involved in our Parent Mentor Project.
Despite excellent sessions run by the team from the Edinburgh Haemophilia Centre and others the highlight for most people was the climbing. The EICA is fantastic facility and their highly professional staff made sure everyone who wanted to have a chance to climb.
World Hepatitis Day
532 people in Scotland were infected with Hepatitis C in the 1970s and 1980s as a result of NHS treatment they received for a bleeding disorder containing the virus. In some cases they were also infected with HIV. Many are still living with chronic ill health as a result of these viruses despite previous attempts at treatment. New treatments for Hepatitis C are beginning to become available which offers the hope of clearing the virus. However, after years of living with the condition and the impact of unsuccessful treatment attempts, it is likely that many will require on going support.
Our friends at the Scottish Infected Blood Forum conducted a scoping exercise on behalf of the Scottish Government to establish the support needs of those infected through blood products and of a similar number of people who were infected through contaminated blood transfusions. Anyone who would like to know more about the tragedy of the contaminated blood disaster in Scotland had a wonderful opportunity this summer. Dogstar Theatre produced an extremely powerful play about the impact of the infections seen through the eyes of two of those affected. In many ways this has been a hidden disaster and we are very grateful to everyone involved in the production for telling the story. We joined Dogstar and Scottish Charities working with people affected by Hepatitis C at a two day event in St Enoch’s Square, Glasgow (27th &28th) to raise awareness of the virus and tackle the stigma that can be associated with it.
The Scottish Government has established a Public Inquiry into the disaster under Lord Penrose. The Penrose Inquiry is expected to report in the autumn. It is our hope that the Final Report will not pull its punches. We will then look to the Scottish Government to rise to the challenge in their response and offer an appropriate end to this long running and bitter campaign for justice.
We are proud to play our small part in the World Haemophilia Day event in Glasgow.
May 2014: WFH Congress Melbourne – Pain
Pain is triggered when the brain concludes, rightly or wrongly, that body tissue is in danger and action is required. Lots of areas of the brain are involved in pain which is why things like memories and smells can trigger pain. Pain causes loss of mobility and damages sleep which significantly reduces quality of life. 35% of people with Haemophilia surveyed in Europe in 2012 suffered from chronic pain.
The “find and fix” approach to medicine isn’t well suited to chronic pain which often has complex causes. No part of the body can send pain signals, only danger signals; the brain interprets it as pain. Therefore, your mental and physical state can make you more likely to experience pain. Levels of pains are always subjective.
Traditionally, opioid drugs have formed the backbone of treatment for chronic pain. However, many patients worry about toxicity and becoming dependent. It is now thought that in many countries opioids are over prescribed. If used long term then they can cause constipation, vomiting, apathy, mood swings and loss of concentration.
There is a lack of research on the treatment of chronic pain in people with bleeding disorders. However, good pain management should start with a pain assessment and often involves keeping a pain diary so a wide range of factors can be analysed. People with bleeding disorders can find it difficult to distinguish between a reoccurring bleed and pain from existing joint damage and should talk to their centre if they are in doubt.
Physiotherapy can play an important role in reducing chronic pain. Improving movement and posture can have a positive impact on pain. Increasing the strength of the muscles around a painful joint can reduce the pain. One speaker had found sports tape (Kinesiotape) very useful in tackling pain in people with Haemophilia. Another speaker highlighted the role of techniques such as complimentary therapies, positive thinking and psychosocial interventions in pain reduction. She also mentioned self hypnosis and stressed the importance of taking medications as scheduled and not only when you feel pain.
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.
19th April 2014
We were deeply honoured to be hosted by Provost Alex Graham at the historic Old Town House in Inverness for a Civic Reception to mark World Haemophilia Day
World Haemophilia Day is always on 17th April we held the Civic Reception on the 19th to allow those who attended to combine the event with a trip to the theatre.
Inverness based production company, Dogstar, have worked with two Scottish people with Haemophilia to 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 gave us 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 themes of World Haemophilia Day this year was Speak Out: Create Change. Bill pointed out that this had been very effectively done through the play. Bruce Norval, whose personal testimony was used to write the play, then led a round of applause to the actors, writer and everyone involved in the production. He spoke movingly about the importance of the story 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 lead 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 though.
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.
April 2013 – Gathering II Conference and AGM was a great success
65 people from all over Scotland gathered together 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 topics as different as relaxation techniques to sharing tips on bringing up children with a bleeding disorder.
We had a fantastic quiz and energetic ceilidh dancing in the evening with plenty of laugher all round.
At the AGM the current board were elected for the first time, having being appointed for our first year, so we 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 event possible. We’d also like to thank all our speakers and special guests who made the event such a 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!