On Friday 14th November the Scottish Haemophilia Centre Directors held their annual meeting with representatives of patient groups. This has been a long standing meeting and is an opportunity to discuss current issues and improve understanding. Although it is often called the Scottish Haemophilia Centre Directors meeting, the Nurses and Data Managers from the Scottish Centres are vital members too. Please bear in mind this is not an approved minute of the meeting and therefore may not be a complete record.
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The 11th of October 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!
Thank you to all who came along and got involved! We hope to see you all again soon!
If you require further information about the event or anything discussed please do not hesitate to get in touch.
We are looking for families in the Glasgow and the West of Scotland to take part in our Parent Mentoring Project.
Are you a parent of a child living with haemophilia or any other bleeding disorder?
Are you experiencing any difficulties in managing the condition?
Do you often wish that you could talk to other families who may have shared similar experiences?
Haemophilia Scotland is piloting an exciting new parent mentoring programme and looking for families who may be in need of some extra support.
- Our Parent Mentors will provide confidential peer & emotional support, on a 1 to 1 basis either face to face, by email or by telephone.
- A supportive listening conversation and companionship including sharing
- personal experiences
- resource information
- tips/strategies on coping
- an understanding ear
- Between one and two hours of support per week for a minimum of six months.
The support is flexible and will be agreed to suit your family.
If you are interest or would just like to find out more the we would love to hear from you.
Please contact Jen Breen – Parent Mentor Coordinator
Phone 0792 609 6743
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!
Scotland has control over which clotting factor products are bought and used north of the boarder, however, in recent years has taken part in a UK-wide tendering process. By buying in larger quantities the price can be kept as low as possible which is good value for money for Scotland. Only the best products are eligible to take part in the tender process so that the quality is kept high.
The recent tender process has given Scotland some of the best prices for clotting factor in the world. However, to achieve these prices, some patients may be asked to change to a different Factor VIII product. Scottish Haemophilia Centres are currently working out which patients will be asked to consider changing products and will be offering training on the new reconstitution device where it is needed. If this affects you then you will hear from your Haemophilia Centre soon but if you have any questions you should feel free to contact them now.
The new arrangements will be up and running from 1st April.
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 the 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 & Thrombosis Centre is based. Now, Integrated Health Solutions Lothian and Brookfield Multiplex Europe have been names as preferred bidders.
Preparatory work has already been going on in Little France but construction of the new buildings is expected to start later in 2014. We have contacted NHS Lothian to ask how best patients can get involved in the plans for the new building.
1 in 17 of us, or 7 % of the population, will be affected by a rare disease at some point in our lives. That is over 300,000 people in Scotland which is more than the population of Aberdeen.
However, for many years each condition has struggles alone to get a timely diagnosis and access to treatment. Rare Diseases UK brings us all together to learn from one another and add strength to our campaigns. Every year on RareDiseases Day we come together to put the spotlight on rarer conditions as a public health priority.
We were delighted to have been invited to address this years’ reception at the Scottish Parliament. Our 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 spoke about what we are doing to deliver practical support to people affected with bleeding disorders in Scotland.
If you would like to show your support for Rare Diseases Day you can tag yourself on the Rare Diseases UK map which will show that, taken together, rare diseases aren’t all that rare.
Maria McCann, Secretary to the Penrose Inquiry has posted a statement on the Inquiry website announcing that the publication of their Final Report will be delayed.
The statement reads,
“On behalf of Lord Penrose, I regret to announce that the intended publication date for the Final Report of March 2014 will not be possible. This date was subject to the time required for the warning letters process and this process is taking longer than expected. Lord Penrose has also suffered a recent family bereavement which has inevitably impacted on the planned timetable. Lord Penrose appreciates that the delay will cause dismay to many with an interest in the Inquiry. Despite his difficult personal circumstances, Lord Penrose remains committed to publishing his Final Report as soon as possible. An update on progress will be posted on this website in February 2014.”
We are extremely disappointed about the delay but the our community well understands the impact a family bereavement can have. We hope that this delay will be as short as possible and that a firm date of publication can be announced soon. We are anxious to see all the hard work that has gone into the Inquiry process producing practical changes for the benefit of all families affected by these infections. The Inquiry team have assured us that this is not an indefinite delay and that they are working hard to keep it to a minimum.
The delay has been reported in the Scottish media:
2014 is set to be a very important year for Haemophilia Scotland.
Our mentoring project will start, reaching out to the families who need our help most.
We are also looking forward to our big event, Gathering II, in Stirling and hope to see lots of you there.
This year is also the 6 year anniversary of the announcement of the Penrose Inquiry and will bring the publication of the final report.
In all of these areas we are optimistic that the work of Haemophilia Scotland will make a real difference to the lives of people affected by bleeding disorders in Scotland.