Monthly Archives: April 2014

After 10 years none of the Ross Report recommendations have been implemented in full

With the Penrose Inquiry expected to report later in the year, we commissioned a report into the implementation of the Report of the Expert Group on Financial and Other Support by Lord Ross (The Ross Report 2003).

READ OUR REPORT IN FULL : The Ross Report- Ten Years On

Ten years after the Ross Report was published there has been some progress in key areas;

  • The Skipton Fund was introduced and provides much needed financial support but at lower levels than Lord Ross recommended.
  • NHS Health Improvement Scotland was established in 2010.
  • Voluntary Sector Organisations can apply for funding to provide specific counselling services for those affected.

However, ours analysis shows the work of implementing the Ross panel’s recommendations is far from complete.

Although the current administration has delivered real action of contaminated blood; establishing the Penrose Inquiry and pledging a meaningful response to it, the hard truth is that ten years on victims are still waiting for action in vital areas.

There has been little progress on access to insurance meaning many of those affected worry about being able to provide for their families after they die.  Support payments from the Skipton Fund are still not at the levels recommended and are still not being paid directly.  Even more concerning ongoing support payments are not passing to bereaved families when someone who was infected dies.  We are also supporting calls from people who were infected through a blood transfusion for a more exhaustive look – back at this transmission route.

The Scottish Government and Scottish Parliament have a good track record of listening to the victims of this disaster.  They have heard petitions, investigated with committees, set up expert panels and even established a full Public Inquiry.  We hope that by highlighting the lack of progress that was made in implementing the 10 year old Ross Report we can focus the minds of MSPs from all parties on the need for a substantial response to the Penrose Inquiry when it reports.  It is high time that this long running campaign was brought to an end with a package of measures which fully supports the infected and their families.”

Issues raised at the Gathering taken straight to the top

National Services Division (NDS) host regular meetings at their offices at the Gyle in Edinburgh

National Services Division (NDS) host regular meetings at their offices at the Gyle in Edinburgh

This week we had one of our regular meetings hosted by National Services Division.  At these meetings we come together with Healthcare Professionals from all the Haemophilia Centres, Scottish Government and as well as NSD themselves who manage the clotting factor risk share agreement.

It was a very constructive meeting.  We were particularly please to be able to get action on three main areas.

  1. At the Gathering, our members told us that it would be a great innovation to link Haemtrack to the home delivery system so that new orders could be automatically generated.  While doing this with a prescription drug wouldn’t be straight forward it was a agreed that it would give patients a great incentive to regularly update their treatment records.  NSD undertook to investigate the potential for this in the future.
  2. Philip Dolan of the West of Scotland Haemophilia Group had highlighted that there is currently a threat of new charges for community dentistry. We share Philip’s concerned that this could put people off from regularly visiting a dentist. Oral health is really important if you have a bleeding disorder and we think the potential for needing more treatment to cover dental work in the future could make introducing a new charge a false economy. It was agreed that NSD would take this issue up within the NHS so we’ll keep you up to date. If you would like to feed in your views please email hello@haemophiliascotland.org or comment on this post.
  3. The meeting also saw an important step towards setting up a National Managed Clinical Network for Bleeding Disorders. Haemophilia Scotland are at the forefront of this move which we think will help Centres work together to drive improvements in the service.

We can make the most of these meetings when members let us know where there are problems, if they have concerns, and share ideas for improving services.  By working closely with the excellent staff in Scottish Haemophilia Centres we can all make a real difference.

Gathering II Conference and AGM was a great success

Once again we were well looked after at the Stirling Management Centre for our Gathering event.

Once again we were well looked after at the Stirling Management Centre for our Gathering event.

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!