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.
WFH Congress in Glasgow
Nothing is expected to happen until after the WFH 2016 Congress in Orlando, USA. Decisions will be led by the team in Canada. There is a strong desire from people affected by bleeding disorders in Scotland to be involved in the congress, to help shape it and to make sure it as successful as possible. It was proposed that The Haemophilia Society attend a future meeting after 2016 to provide a briefing.
Hepatitis C Scoping Exercise
The Scottish Infected Blood Forum reported that the Scoping Exercise that they have been conducting on behalf of the Scottish Government has gone well and had well over 100 responses. They will be reporting to the Cabinet Secretary shorty and then hope to make the report more widely available. Haemophilia Scotland highlighted that a similar sounding survey, which focuses more on the level and delivery of financial support, has been sent out from the All Party Parliamentary Group on Haemophilia and Contaminated Blood Products. These are different pieces of work.
The Penrose Inquiry
Everyone is still waiting for news from the Penrose Inquiry. The warning letters phase of the process appears to be nearing its end but no date for publication of the Final Report has been announced.
Haemophilia Scotland outlined our understanding of the new approach which is being developed. In particular that a new care pathway will be developed to cover people who don’t fall neatly into the group who almost always needs specialist involvement and the group who can usually be treated by a General Dental Practitioner. We have been told that there will be a consultation on the new pathway. It was agreed that if anyone was having trouble finding a dentist should contact Dan Farthing at Haemophilia Scotland or Philip Dolan at The West of Scotland Haemophilia Group / The Scottish Infected Blood Forum so they can take it up directly with the Chief Dental Officer as this shouldn’t be happening any more.
National Haemophilia Database
Soon there will a new version of the patient information leaflet that goes with the database. If you have given your consent the database will also be able to hold genetic information.
Home Delivery Satisfaction
The recent satisfaction survey had a response rate of almost 40%. People reported that they were happy with the service and particularly like the two hour delivery slots and the facility to communicate with text messages. In terms of improvement, people would like fewer incomplete deliveries. There was agreement that BUPA was providing a good service.
Work is continuing on putting together two pilots to look at how psychosocial support can be best provided in Scotland. One will be based in Edinburgh and is coming along well. The other would be based in Glasgow and Haemophilia Scotland will meet with the Glasgow Centre to work out the next steps.
New treatments for Hepatitis C
Everyone was very encouraged by the potential for achieving Sustained Virologic Response (SVR) with the new interferon-free treatments. The need to ensure access for people infected by contaminated blood products was discussed as was the need for good information to let patients make informed decisions about treatment.
Clotting Factor Product Contracts
The NHS buys clotting factor products through big contracts to keep the price as affordable as possible. Since April the contracts for Factor VIII products have changed. The Haemophilia Centres were very grateful to everyone who has switched products (usually to ReFacto AF or Advate) to make it work. Negative feedback has been largely about having to learn to use a new infusion kit but everyone was still keen to hear if there have been any other problems. Scotland purchases Factor VIII as part of the UK Clotting Factor Tender but there is a separate, Scottish, contract for Factor IX.
There was a briefing about the change in advice about the use of Kogenate for people who hadn’t been treated before. This was the result of some studies which suggest that there is an increased risk of inhibitors for some people. The product hasn’t been used in this way in Scotland for about 6 years for other reasons. Therefore, no change in practice was required.
Market Authorisation and Longer Acting Clotting Factor Products
Haemophilia Scotland updated the Centres on our campaign for an open market inside the EU for the longer acting clotting factor products which are being developed. The Centres offered some help with useful background information.
National Managed Clinical Network for Inherited Bleeding Disorders
The second stage application has been passed by the first committee to look at it and will be considered by the next committee on 18th November. If it is successful there will have to be more work on the details of how it would operate in practice which may have an impact on the future of the annual meeting between Scottish Centre Directors and patients.
Everyone agreed about the continued importance of returning treatment records. The quality of the data used to provide the best possible care is highly dependent on these returns. The android app for HaemTrack has now been launched and is being received well. A new HaemTrack User Group is also being set up to get better feedback on the system.
Haemophilia Scotland Update
We updated the Centres about our work. In particular we highlighted the success of the Parent Mentor Project. We heard that the Centres were getting good feedback from those involved and that lots of people had valued the Children and Family Day at Amazonia M&D. We told them about our work to support people with bleeding disorders in Malawi too and explained that two of our volunteers were in Malawi finding out more about what need to be done. We also reminded everyone that the easiest way of keeping up with is going on at Haemophilia Scotland is to click on the “Follow” button on the bottom right of the home page of our website. That way you can be emailed every time there is a new story.
The Scottish Infected Blood Forum / West of Scotland Haemophilia Group Update
The Scottish Infected Blood Forum are about to start a project which gives people affected by the contaminated blood disaster a chance to tell their story. The project arose from concerns that very few people had been able to give oral evidence to the Penrose Inquiry leaving an unmet need to be heard.
It was agreed to review the need for future meetings depending on what happens with the National Managed Clinical Network for Inherited Bleeding Disorders. However, if the application is not successful or those meeting don’t serve the same function it was agreed to continue with the annual meetings.
If you would like to know more about any of the topics discussed please email Dan Farthing-Sykes at email@example.com