Monthly Archives: July 2014

World Hepatitis Day

Bruce Norval raising awareness of Hep C, World Hepatitis Day and the Factor 9 play.

On World Hepatitis Day we are asking people in Scotland to remember that Hepatitis C can affect anyone. 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 ongoing support.

Dan and Petra (from the Hep C Trust) push the button to knock down the virtual wall of Hep C stigma

Dan and Petra (from the Hep C Trust) push the button to knock down the virtual wall of Hep C stigma

Our friends at the Scottish Infected Blood Forum are conducting 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. We are urging as many people as possible to complete the survey and take part in this exercise. The survey can be completed online at https://www.surveymonkey.com/s/HepC-Scoping-Exercise.

Anyone who would like to know more about the tragedy of the contaminated blood disaster in Scotland has a wonderful opportunity this summer. Dogstar Theatre has produced an extremely powerful play about the impact of the infections seen through the eyes of two of those affected. We would like as many people as possible to see Factor 9 during the Edinburgh Fringe at the Summerhall. 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 are joining 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.

MPs report on risk from vCJD

The All Party Parliamentary Group on Haemophilia and Contaminated Blood has members from the House of Commons and the House of Lords

The House of Commons Science and Technology Committee have made a detailed report in relation to the risk from vCJD

We know many of our members have been told that they are at risk for public health purposes (the at risk group) in relation to vCJD.  It is important to remember that there have been no cases of anyone contracting vCJD from a blood product. However, the prion associated to the condition can be transmitted by blood and implicated prions have been discovered at post-mortem in a man with Haemophilia who died of other causes.  With that in mind it is important that the community stays vigilant.

Today’s report from the House of Commons Science and Technology Committee is called After the storm? UK blood safety and the risk of variant Creutzfeldt-Jakob Disease and it makes some important recommendations.

The committee says that they “cannot be confident that prions are not present in the blood supply” and therefore “consider it imperative that a precautionary approach to this risk be maintained until further evidence becomes available.”

They also recognise that “Pathogens are constantly emerging and evolving; novel pathogens will therefore always pose a threat to the blood supply. In the past, it has often taken multiple cases of transfusion-transmitted infection before these threats have been recognised and mitigated. This will remain the case as long as risk mitigation measures remain pathogen-specific.”  They go on to “urge the Government to take steps to support the development of broader spectrum technologies with the potential to mitigate the risk of both known and unknown pathogens.”

To always assume that there might be a new and undiscovered threat to blood safety and to act accordingly is an important lesson from the contaminated blood disaster and it is very welcome to see an influential committee adopt this position.

The report is critical of the amount of support the Westminster Government has given to the testing and adoption of the DuPont’s prion inactivation product in relation to the decontamination of surgical instruments.  The committee also stresses the need for better access to the rare vCJD samples to promote the development of a vCJD blood test.  They also recommend that “the Government ensures that a large-scale vCJD blood prevalence study be initiated in the UK within the next 12 months.”

However, the recommendations which will probably be of most interested to people with bleeding disorders are recommendations 16 to 19 which deal specifically with people who are in the at risk group.  These recommendations call for people in the at risk group to have developments explained to them in person; for the prototype vCJD blood test to be offered to people in the at risk group; for improved monitoring of the at risk group; and for Government to be more involved in decisions about who is in the at risk group.  These recommendations are reproduced below for your ease of reference.

Read more

New understanding with The Haemophilia Society

Bill signing the MoU with Dan, Nikki, Lynn and Angela

Bill signing the MoU with Dan, Nikki, Lynn and Angela

At the July meeting of our Board of Trustees we signed an important document about our relationship with The Haemophilia Society.

You can read about the principles we will follow and some examples of what that might mean in practice by reading the Memorandum of Understanding we have agreed.

We hope that this document will mean that relations between our two Charities are put on a solid foundation for the future.

 

Now is a great time to talk to supportive MSPs

Motherwell was looking grand in the sunshine, there was even a band playing in Merry Street.

Motherwell was looking grand in the sunshine, there was even a band playing in Merry Street.

Now that the Scottish Parliament is in recess the MSPs have returned to their constituencies and regions to deal with local issues and prepared for the referendum.  That means that now is a great chance to meet your local MSPs without having to travel to the Scottish Parliament.

Today I was in Motherwell seeing Richard Lyle MSP who is a great friend of Haemophilia Scotland as well as been a member of the Scottish Parliament’s Health and Sport Committee.

We discussed how to keep his colleagues interested and informed in the run up to the publication of the Penrose Report in the Autumn.  I also updated him on our campaign for an open market for longer acting clotting factor products. As usual Richard was extremely helpful and full of useful advice and ideas.

The Scottish Government has published its Implementation Plan for Rare Diseases in Scotland

The Implementation Plan for Rare Diseases in Scotland 2014

The Implementation Plan for Rare Diseases in Scotland 2014

Today the Scottish Government has published it’s Implementation Plan for Rare Diseases in Scotland 2014 which explains how the Scottish Government will fulfil the responsibilities it signed up to as part of the The UK Rare Diseases Strategy.

Since devolution healthcare has been managed very differently in Scotland, Wales, Northern Ireland and England.  It is now extremely unusual for there to be a UK wide health strategy.  However, when considering rare conditions, such as bleeding disorders, it makes sense to have a common approach right across the UK. Today’s plan explains how the Scottish Government will live up to the challenge of improving diagnosis, treatment and care for people with rare diseases and their families.

 

HepCScot Campaign Launched Today

If you use Twitter please #HepCScot any photos of the bus, media coverage or simply to support the campaign.

If you use Twitter please #HepCScot any photos of the bus, media coverage or simply to support the campaign.

Today representatives from Scottish organisations working with people with Hepatitis C gathered outside the Scottish parliament to launch the HepCScot campaign in the run up to World Hepatitis Day on the 28th of July.

We took part because we believe that people with bleeding disorders and Hepatitis C shouldn’t be forgotten in the push to find the estimated 19,500 people in Scotland who have Hepatitis C but don’t know they are infected.

We are making four main points.

  1. To remind people that 532 people in Scotland were infected with Hepatitis C by being treated with contaminated blood products as part of their NHS treatment. We need to work with other organisations to combat stigma around the infection and make sure everyone has access to the support services they need.
  2. Many people with a bleeding disorder and Hepatitis C have spend decades enduring the infection as a chronic and life-threatening condition – often undergoing several unsuccessful attempts at treatment.  The latest treatment offers much better chances of success so we are calling for it to be offered to all of those with bleeding disorders and Hepatitis C who might benefit.
  3. Scottish Infected Blood Forum are conducting 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.  We are urging as many people as possible to complete the survey and take part in this exercise.
  4. Dogstar Theatre have produced an extremely powerful play about the impact of the contaminated blood disaster in Scotland.  We would like as many people as possible to see Factor 9 during the Edinburgh Fringe at the Summerhall.

With the Penrose Inquiry expected to report in the Autumn, this year’s World Hepatitis Day couldn’t be more important.

Contaminated Blood Campaign Update from Alistair Burt MP in Westminster

The All Party Parliamentary Group on Haemophilia and Contaminated Blood has members from the House of Commons and the House of Lords

The All Party Parliamentary Group on Haemophilia and Contaminated Blood has members from the House of Commons and the House of Lords

As we reported on the 8th of April Alistair Burt MP is working with MPs who are supportive of the contaminated blood campaign and the Prime Minister to broker a cross party approach to the contaminated blood issues.

Today Alistair Burt MP sent an update to those who attended the April meetings and some other interested people.

Alistair Burt MP’s update says;

On Tuesday June 24th the group of MPs principally involved in helping victims of the scandal in their efforts to seek further consideration from the Government had a meeting with Mr Nick Seddon, the No 10 official tasked by the PM to take forward the work on his behalf.

The MPs present were Rt Hon Alistair Burt MP, Diana Johnson MP, Jason McCartney MP, and assistants to Nadhim Zahawi MP, and Jenny Willott MP.

The group now has 54 MPs as members, reflecting the success of their constituents contacting them and the commitment of MPs.

The polling and marketing research organisation YouGov has now agreed, at their own expense, to work with the MPs to provide a confidential channel of communication to sufferers. As discussed at the two recent public meetings, this enables the MPs to ask them directly about their experiences of the Trusts, which the All Party Group on Haemophilia is keen to do, and some of the options for changes for the future. We anticipate these contacts to start being made soon, and we hope that everyone who wishes to take part will respond, as their views are extremely important to us.

Mr Seddon emphasised to the MPs how personally engaged the PM was with the issue, and how he was working with Public Health Minister Jane Ellison on possible options for the future. This work was obviously related to all that had gone before, and the concerns that MPs had fed through, together with all the personal testimonies provided over many years. No decisions have yet been made. Feedback from contacts with sufferers in the next few months will be helpful, but we also continue to await the results of the Penrose Inquiry which has been delayed. MPs want to get on with their own work, but understand the immense interest in Penrose, which almost certainly must have an influence on Government after it reports. So in the meantime we will continue with our own work, and are keen to have some definite proposals and outcomes before the end of this calendar year if possible.

The Scotsman reports on the cost of the Penrose Inquiry

the scotsman

Today’s Scotsman newspaper has a story about the costs of the Penrose Inquiry (page 14).

A Freedom of Information request made by the paper has uncovered that by the time it reports the Penrose Inquiry is expected to have cost £11.7million.

Bruce Norval is quoted in the article saying “I have campaigned on this issue for years and I now just want a final response so I can get on with what is left of my life.”

Dan Farthing, our Senior Executive Officer, said: “It would have been inexcusable if Lord Penrose had cut corners to keep costs down. An inquiry on the cheap which answered none of the big questions would be worse than no inquiry at all.”

You can read the article in full on The Scotsman’s website.

The story is also picked up in the Comment piece (page 22).

NB The article states that Haemophilia Scotland campaigned for the Penrose Inquiry.  While many of our members were vociferous campaigners for a Public Inquiry, Haemophilia Scotland itself did not exist as an independent organisation until after the Inquiry had begun.  The Inquiry was secured largely through the tireless efforts of individual campaigners in Scotland. Philip Dolan, Bruce Norval, Robert & Alice Mackie, as well as Andy Gunn can claim the lion share of the credit along with many others.