This week the Scottish National Managed Clinical Network for Inherited Blood Disorder (the Network) met for the first time following its launch in November.
The structure for the Network which was agreed means that there will always be a minimum of two patient/carer representatives on the Steering Group. There will also be three Working Groups which any interested people can join; so patient, parents, and partners are all welcome. The Working Groups will be made up of patients and healthcare professional and will work as much as possible outside meetings. It is hoped that will make it as easy as possible for those who are working or have reduced mobility to take part. So if you are interested in any of the working groups please sign up today.
The three working groups are,
Communication and Stakeholder Engagement
This group will work on,
- Patient needs assessment
- Website and Social Media
- Production of information materials
- Education activities
- Consultation on all aspect of the work of the Network.
Best Practice, Policies, and Protocols
This group will work on,
- Updating policies and protocols
- Developing new policies and protocols (for example on moving from paediatric to adult care and/or the use of the new longer acting products)
- Spreading best practice
Quality Improvement, Audit and Data
This group will work on,
- Measuring health outcomes
- Auditing the Haemophilia Centres
- Service mapping
- Psychosocial service development
If you are interested in joining any of these working groups please contact Dan Farthing-Sykes on email@example.com or by calling him on 0131 524 7286. He can answer any questions you might have and pass your details onto the Network team.
Jane Ellison MP, the UK Government Parliamentary Under-Secretary of State for Health (Battersea, Conservative) announcing the start of the English, Welsh, and Northern Irish contaminated blood consultation.
Today, Jane Ellison MP, the Minister responsible for the contaminated blood issue for the UK Government, announced the start of the long awaited consultation on the financial support arrangements available in England, Wales, and Northern Ireland. The consultation has been published on the gov.uk website and will run for 12 weeks until the 15th April.
In her statement she made it clear that the proposed financial support is not compensation, and said that her approach was guided by four principles,
- Focus on those infected.
- Respond to new advances in medicine.
- Provide choice where possible.
- Maintain annual payments for everyone currently receiving them.
The Department of Health proposals are substantially different from the Scottish proposals being considered north of the border.
In summary, the Department of Health are suggesting the following changes,
- Increase in the maximum annual ongoing payment for people with Hepatitis C of a few hundred pounds a year, bringing it up to a round, if arbitrary, £15,000.
- As all those who were infected with Hepatitis C to go through an individual health based assessment to decide how much financial support they are entitled to. That support would be provided as ongoing payments, potentially replacing the discretionary payments currently made through the Caxton Foundation.
- Improved access to treatment for Hepatitis C.
- Bereaved families given a choice between continuing to have access to discretionary grants or a lump sum calculated on the value of those grants.
- A single organisation for administration.
The Minister suggested that the cost of implementing this package would be £100 million, plus the £25 million already announced, in addition to current expenditure. She estimated this would amount to doubling the current Department of Health expenditure over five years. More details about the statement can be found on the Houses of Parliament website.
Haemophilia Scotland remains committed to pushing for the urgent implementation of the Scottish proposals.
We are pleased to announce that you can now support Haemophilia Scotland through JustGiving.
That means that it is now much easier to raise money for our information, support, and advocacy services.
We already have our first JustGiving fundraiser too! Fraser Bissett, and his friend Callum Gordon, are doing various events for us in 2016. Their amazing efforts will include a Coast to Coast challenge in the Highlands of Scotland. They will cover 105 miles in two days; running, cycling, and kayaking. They will be raising money and awareness with their training events too. We wish them fair weather and following winds.
You can also use just giving to make one off donation or support us more regularly with an monthly donation.
All this means our text donation details have changed too. To donate from your mobile just text SCOT12 and the amount you’d like to donate (£5) to 70700.
A new pair of leaflets from NHS Scotland have just been published.
The first leaflet is Guidance for Adult Dental Patients with Bleeding Disorders. It gives information about how to prevent dental problems, what dental treatments do and don’t typically cause bleeding problems, and information about local anasthethesia.
The second leaflet is Guidance for Dental Practitioners. You can take this to your local dentist if they have any questions about how to treat you with a bleeding disorder. The leaflet contains the relevant contact details they may need.
You can read the text from the patient leaflet on our Dentistry page.
31st January, 1pm – Women’s Day at Blythswood Square
We will be holding our first women’s group meeting on 31st January over lunch at the lovely Blythswood Square. This group is specially for women affected by von Willebrands Disease, haemophilia and those who carry the gene. Our first meeting will be a get together to link up and discuss ways of supporting each other. Spa treatments are available! Please let me know if you would like to book a place – fill in the form below or contact me via phone, email or facebook.
Events form for Women’s Day, 31st Jan
Richard Lyle MSP is a parliamentary champion for people affected by the contaminated blood disaster. At a recent meeting of the Health and Sport Committee he asked what provisions the Scottish Government have made to improve financial support payments.
Once of the most interesting things he discovered was that, if any of the recommendations from the review group are accepted, the new money will come from central funds. This means that local health boards will not face an insidious choice between current healthcare services and the moral duty to those affected by the contaminated blood disaster.
This is in contrast to suggestions south of the border that any new money for improved payments there would reduce the funds available for front-line services.
It is also clear that a final decision on whether or not to implement the recommendations has not been taken yet. It is vital that as many people as possible contact their local MSPs to ask them to lobby for improvements to the financial support payments. We must make sure that there is strong, cross party, support for the campaign in the Scottish Parliament.
Read the full exchange here,
The latest edition of the Irish Haemophilia Society (IHS) information magazine, Positive News, arrived in the post today.
It is a very well researched resource for anyone with a bleeding disorder interested in Hepatitis C and HIV. While some of the information about support and access is specific to Ireland, the information about the state of research and the science behind current treatments is excellent. They also frequently publish personal stories about going through treatment.
We are very grateful to the IHS for letting us reproduce it here.
IHS Positive News – December 2015
Midnight Moment at Edinburgh (Credit: Lloyd Smith)
Thank you to everyone who sent us a Christmas Card, especially those who included a donation, which is very much appreciated.
Thank you all for all your support in 2015. This website was visited over 17,000 times and over 1,000 of you are now friends with us on Facebook. Our membership is growing all the time, which is very important for a new organisation, if you aren’t a member or aren’t sure if you are member then why not start the new year by signing up for free.
2016 will be a big year for us, these are just some of the events that are coming up.
Scottish Bleeding Disorders Network
The new National Managed Clinical Network for Inherited Bleeding Disorders will be fully up and running soon and we will be looking for volunteers who’d like to be involved.
Changes to the contaminated blood financial support?
By the end of March we expect to know whether or not the Scottish Government will implement the recommendations from the contaminated blood financial support review group. We will need as many people as possible to contact their MSP to make sure that their is broad political support for making improvements to the payments.
A full program of events
Our new Events Officer, Emma Black, is putting together an impressive program of events for 2016. Please put the weekend of the 19th and 20th of March in your diary now as we are planning to hold a Gathering and AGM. A third of the places on our board of trustees will be up for election too.