Category Archives: vCJD

Joint Campaigns Meeting with Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF)

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On October 14, between 11am-1pm, Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting in Glasgow for anyone interested in the contaminated blood and blood products disaster in Scotland.

This will be a chance for people to come together in Scotland and discuss issues ranging from their experience of the new Scottish Infected Blood Support Scheme and how it can be improved.

The venue, Mercure Glasgow City Hotel, is located near George Square in the city centre and is accessible by train, bus or car. For more details see:https://www.mercureglasgow.co.uk/

Register now to secure your space.

Joint statement ahead of meeting with Bishop James Jones

Today, representatives of both Haemophilia Scotland and the Scottish Infected Blood Forum will be in London to attend a meeting between people affected by contaminated blood and blood products and the former Bishop of Liverpool, James Jones.  We will be expressing the views of our members from our recent joint campaign meeting and have jointly issued the short statement below.

In our united view, the UK Public Inquiry should be a statutory Inquiry under the 2005 Inquiries Act. It should be conducted by a panel rather than a Chair and they should be appointed as soon as possible with appropriate input from affected people. The wrong Chair and Panel is worse than no Chair and Panel. There must be Scottish Core Participants and Scottish legal representation.

We want people to make their own decision about whether or not to attend the meeting with the Bishop. The Scottish charities are attending because we want to take opportunities to engage and put forward the Scottish perspective. Therefore, we are not boycott the meeting or planning to walk out of it. We take the Bishop at his word and believe him when he is says that he is making a genuine attempt to help.

Haemophilia Scotland and the Scottish Infected Blood Forum are both currently working with Thompsons Solicitors.

We continue to call for the Department of Health to step aside in favour of another Department taking the lead establishing a UK Inquiry.

Joint Contaminated Blood and Blood Products Campaign Meeting Report

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On Saturday the 26th August, Haemophilia Scotland and the Scottish Infected Blood Forum held a joint meeting to discuss a collective response to the announcement that there will be a UK Public Inquiry into the contaminated blood and blood products disaster.

The meeting was well attended by affected people, including independent campaigners, from across Scotland. Members of the legal team who represented the patient interest during the Penrose Inquiry also took part.

The clear view of the meeting was that,

  1. The UK Public Inquiry should be a Statutory Inquiry but framed to be as flexible and responsive to affected peoples’ concerns as possible. In particular,
    1. The Inquiry should be under a panel rather than a lone Chair.
    2. The investigation should be segmented rather than linear. There should be milestones so that as each aspect is dealt with a preliminary recommendation can be made so that the appropriate bodies can respond immediately. Panel members could be selected with a view to them leading particular aspects of the investigation. This could stop the Inquiry taking longer than necessary.
    3. Many more affected people should be able to give oral evidence than were permitted to during the Penrose Inquiry.
    4. Patients and patient representative need to be fully involved at all stages from establishing the Inquiry, through how it is conducted and reports, to the implementation of its recommendations.
    5. Be accessible to people all over the UK including holding public hearings in all four nations and streaming the proceedings online.
  2. There are particular Scottish elements to the disaster which must be represented in the UK Inquiry. Scotland has had its own NHS, blood transfusion service, and legal system throughout the disasters. Specifically, there must be Scottish Core Participants and separate legal representation.
  3. All Scottish campaign organisations and individuals should work together as much as possible to maintain a clear Scottish position in relation to the Inquiry and the disaster. We should engage with the process of establishing the Inquiry as early as possible to be able to influence the terms of reference.
  4. There are important lessons to learn from the Scottish experience of the Penrose Inquiry including,
    1. that the Terms of Reference need to be very specific and clearly direct the Inquiry Chair and Panel to examine the key areas of concern for the community, and make recommendations. Terms of reference which require general investigation are vulnerable to be interpreted so as not to require the specifics to be examined.
    2. The Chair and Panel should be young enough, and foreseeably well enough, to complete the work while in good health.
    3. Once the Chair and Panel are appointed they will have a lot of power. It is important not to rush to appoint an inappropriate Chair or Panel Member but to appoint people who are acceptable to those affected.
  5. The Inquiry should be focused on bringing out the whole truth and the terms of reference should include,
    1. Who is accountable?
      • Were there actions which could lead to criminal/civil prosecutions or further disciplinary action?
      • The Inquiry must be able to investigate the actions of Ministers. Was action delayed and if so why?
      • Investigate whether systems and procedures were appropriate and not just whether they were followed.
    2. All viruses and prions including Hepatitis B, Hepatitis C, HIV, and CJD.
    3. Have all appropriate lessons been learnt and if so what specifically has changed? Should include a full risk assessment.
    4. The development and use of pooled plasma derived clotting factor products.
    5. Protecting the safety of the blood supply, including surrogate testing and donor exclusion.
    6. Consent for research, testing, and using stored samples.
    7. Communication of risk and infected status. Were patients fully informed and included in decision making.
    8. Whether evidence was removed by the destruction or alteration of medical records or other relevant files.
    9. The impact of the disaster.
      • Financial losses and on-going financial support needs, including insurance costs.
      • Health of those infected (from fatigue and brain fog to death), their families, and their sexual partners.
      • On-going no financial support needs of all those affected.
  6. It is vital not to lose focus on working to improve the Scottish Infected Blood Support Scheme (SIBSS).

Several people who spoke at the meeting made it clear that if there was an unsuitable Chair, Panel, or Terms of Reference then they wouldn’t be prepared to engage with the process.

Haemophilia Scotland and the Scottish Infected Blood Forum will be working together with members and independent campaigners to develop the views of the meeting into a comprehensive Scottish position.

BREAKING NEWS

A venue has been set for the meeting between Bishop James Jones and affected people on the 12th September (11:30 for a 12:20 start). It will be at BMA House, Tavistock Square, London, WC1H 9JP.

Governments respond about UK Inquiry

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On the 25th of July Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) wrote to Nicola Sturgeon MSP, First Minister about the UK Public Inquiry into contaminated blood and blood products.

We have now received a reply on her behalf from Shona Robison MSP, Cabinet Secretary for Health and Sport, as the Minister responsible.

In her reply Shona Robison MSP,

  • Offered to take a more proactive role in advising the UK Government of the views of Scottish stakeholders if that would be helpful.
  • Agreed with our call for the procedures of the UK Inquiry to be accessible for people in Scotland.
  • Detailed information and support offered by Scotland to the process of establishing the UK Inquiry.
  • Declared her intention to continue to work closely with us in relation to the UK Inquiry.

Read her reply in full here.

We have also received a reply to Bill Wright’s letter of the 12th July to The Rt Hon Theresa May MP, Prime Minister, which was passed to Jackie Doyle-Price MP, Parliamentary Under-Secretary of State for Care and Mental Health, as the Minister responsible.

In her reply Jackie Doyle-Price MP,

  • Welcomed our ideas on how the UK Inquiry could add value for people in Scotland.
  • Recognised that previous investigations have not gone far enough.
  • Explained that the UK Governments primary concern is to properly engage with those affected.
  • Encouraged us to make further submissions in writing.

Read her reply in full here. 

Following our joint campaign meeting it is clear that members want us to engage with the process of establishing the Public Inquiry and to try and influence the terms of reference to learn from our experience of the Penrose Inquiry.  We are keen to have an open dialogue with both Governments so that the views of people in Scotland are heard. However, we continue to believe that the Department of Health (UK) are an inappropriate partner for those discussions.

Meeting Bishop James Jones in London

Kings-Cross-Square.jpgThank you for everyone who came to our joint campaign meeting with the Scottish Infected Blood Forum (SIBF) on Saturday.  It was an extremely interesting and informative debate.  We will post a report from the meeting for those who couldn’t be there as soon as possible.

One piece of feedback we’ve had was that people would like to know more about the upcoming meeting with Bishop James Jones.  All the information we currently have about  is detailed below.  Bill Wright and Dan Farthing-Sykes will be attending on behalf of Haemophilia Scotland and look forward to seeing anyone else who is able to attend.

Who

Bishop James Jones, former Bishop of Liverpool is Chairing a meeting of the affected communities and their representatives. The meeting is being supported and promoted by the All Party Parliamentary Group on Haemophilia and Contaminated Blood. No representatives of the Government will be present at the meeting.

When

12th September 2017. Refreshments will be available from 11:30am and the meeting will start at 12:30.  There will be a break in the middle of the meeting which will finish at 3:00pm.  The Bishop will be available informally for a short time afterwards.

Where

BMA House, Tavistock Square, London, WC1H 9JP.

What

The Bishop has agreed that the purpose of the meeting is:

  1. To assist the Community in communicating to the Government their concerns with the process for setting up the Public Inquiry, (e.g. The Department of Health cannot be the sponsoring department);
  2. To assist the Community in discussing how they would want to be involved in drawing up the Terms of Reference;
  3. To assist the Community in communicating to the Government their own understanding of the next steps that need to be taken to set up the Inquiry.

Registration

Anyone who wants to attend should register in advance by emailing Diana Johnson MP on JOHNSOND@parliament.uk. The deadline for registration is the 5th September.

Travel Costs

Receipted, reasonable travel expenses will be met by the UK Government.  Further information on how to reclaim travel costs following the meeting. The UK Government is, however, not able to cover accommodation costs.

We are grateful to The Haemophilia Society who are involved in organising this meeting and provided this information in their capacity as the Secretariat to the APPG on Haemophilia and Contaminated Blood.

Sporadic CJD cases in the UK bleeding disorders community reported

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A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.

Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease.  Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes.  This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD.  Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD.  To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people.  At the moment there have been 178 cases of vCJD in the UK.

The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”

There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail.  In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.

Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions.  Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications.  We will be carefully monitoring the situation and will report any further developments on our website and to our members.

Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website.  The best place to go with specific medical questions about your health is your Haemophilia Centre.

Last chance to have your say in our #NeedsAssessment

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We are closing the needs assessment survey on Thursday morning (1st December).  We’ve had a really good response so far but the more people who take part the more useful our results will be.  We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.

There are some parts of Scotland that are a little under-represented at the moment.  We are keen that the results reflect everyone in Scotland.  So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.

If you do take part then you might also win one of three FitBits that we are giving away.  They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!

Click here to take the survey

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