Category Archives: Penrose Inquiry

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 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.

UK Contaminated Blood and Blood Products Inquiry and Meeting

 

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Since Haemophilia Scotland was established we have tried to report back as quickly as possible about all of our activities.  Therefore, we wanted to keep you up to date with developments in the last couple of weeks since the UK Inquiry into the contaminated blood and blood products disaster was announced.

We received a copy of a letter from Diana Johnson MP, Co-Chair of the All Party Group (APPG) on Haemophilia and Contaminated Blood to the Prime Minister which raised three main issues,

  1. That the Department of Health are not the appropriate department for overseeing the establishment of the Inquiry.
  2. The need for clarity on the timetable for establishing the Inquiry.
  3. The need to establish a safe repository for evidence which could be of interest to the Inquiry.

In our reply we supported these calls and provided information from our experience of the Penrose Inquiry to support her.

The Department of Health called a consultation meeting at short notice early in the morning in central London.  The meeting was boycotted by the vast majority of campaign groups including The Haemophilia Society and Haemophilia Wales.  Haemophilia Scotland neither joined the boycott nor attended the meeting.  We are anxious to have a substantive conversation, on the powers and terms of reference of the Inquiry, but is clear that the Department of Health cannot be the responsible Department.

We have had a meeting with the Scottish Infected Blood Forum (SIBF) and agreed to work as closely as possible together with them, and other independent Scottish campaigners.  We hope we can build on the relationships forged following the Penrose Inquiry to have a strong collective voice highlighting the Scottish dimensions to the establishment of the UK Inquiry.

To give everyone affected in Scotland a chance to feed into our collective thinking we are holding a joint members’ meeting at 2pm on Saturday 26th August in the Lomond Room of the Edinburgh Park (The Gyle) Premier Inn.  This is a private meeting and so you must register if you want to attend. The meeting will discuss what lessons can be learnt in from the Penrose Inquiry and what we’d like to see in the terms of reference for the UK Inquiry. We have also jointly written to Nicola Sturgeon MSP, First Minister, to ask her to ensure that Scottish Government engage with the Inquiry and urge the UK Government to work with those affected.

We joined a telephone conference call arranged by Diana Johnson MP and Sir Peter Bottomley MP as Co-chairs of the APPG.  The purpose of the call was to hear from the Bishop of Liverpool who offered to act as an intermediary with the Government.   The Bishop made it clear that he did not believe that the Department of Health were the appropriate part of Government to oversee the Inquiry. He also stated that he believed a proper consultation would take about six months. His remarks on timing are in line with the Government’s own guidelines on consultation.

Since the call, and following legal advice, some campaigners, have said they are not happy with this approach. They fear if the Bishop opens a dialogue with the Department of Health that could legitimise their involvement.  Haemophilia Scotland is keen to work with the Bishop to find a way to find an appropriate part of Government to conduct a meaningful consultation.

Both Haemophilia Scotland and the Scottish Infected Blood Forum have approached Patrick McGuire at Thompsons Solicitors about continuing to represent us and he has agreed.  Patrick and Thompsons bring the experience of having won a judicial review and secured a Public Inquiry and then representing the patient interest during it.  It is our hope that Thompsons will be included on equal terms with any law firms working on group actions.

Finally, the Scottish Contaminated Blood Memorial Fund is continuing to raise funds for a lasting memorial to remember those affected by the disaster.  Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate ten pounds your text should read “CBME23 £10”.

Further Information

The House of Commons Library has produced two briefing papers on Public Inquiries which will help anyone who would like to understand the various options in more detail.

UK Govt. announce Contaminated Blood Inquiry

Theresa May

Yesterday, the Prime Minister, Theresa May announced she would be holding a public inquiry into the contaminated blood disaster.

We’d like to congratulate everyone who has worked so hard over many decades to achieve this.  We know from our own experience of the Penrose Inquiry that there is a lot of hard work still to do but securing an Inquiry is a huge achievement.

Our Chairman, Bill Wright, has written to the Prime Minister today asking for clarification about the scope and remit of her Inquiry and how those affected in Scotland will be involved. We know that the Scottish Government are also seeking their own urgent clarifications.  A statutory inquiry would require the UK and Scottish Governments to work together but so far no discussions about achieving this have taken place.

In his letter Bill highlighted areas which were either not covered by the Penrose Inquiry or not covered is sufficient detail.  These are areas where the new inquiry might make a significant contribution to providing justice for people in Scotland.  There are lessons to be learnt from the experience of the Penrose Inquiry which must be considered to make the Prime Minister’s inquiry as effective as possible.

Meanwhile, Haemophilia Scotland will remain focused and committed to working for the continually improvement of the Scottish Infected Blood Support Scheme and to playing an active part in the Scottish Clinical Review Group chaired by Prof David Goldberg.

More information

Let’s remember the impact HIV has had on our community on #WorldAIDSDay

Today is World AIDS Day.  Since the Penrose Report was published we know that at least 59 people were infected with HIV in Scotland by being treated with contaminated plasma derived clotting products for their bleeding disorder.

aids-virus-kills-man-in-britainThey were some of the first people in Scotland to be infected and endured the early experimental treatments and suffered the extreme levels of stigma that came with the public panic about the virus. Everyone who lived through that period remembers the media stories and the impact it had on the way everyone with a bleeding disorder was treated.  Tackling the stigma associated to HIV is a central plank of this year’s World AIDS Day campaign under the slogan “It’s not just retro it’s wrong.”

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Of the 59 people infected there are just 20 long term survivors left.  The pain of those families who lost a loved one hasn’t gone away.  The long running campaign for answers about how this could be allowed to happen, to make sure all relevant lessons are learnt, and for their to be proper financial support, has taken its toll on many affected families.  Everyone who was treated for a bleeding disorder in the 1970s and early 1980s was exposed to Hepatitis C, including everyone who was infected with HIV.  That meant the disaster caused 478 Hepatitis C infections in people with bleeding disorders.

We also remember that it wasn’t just people with bleeding disorders who were infected.  There were an unknown number of people who were infected with HIV through a blood transfusion and up to 2,500 may have been exposed to Hepatitis C as a result of the contaminated blood disaster in Scotland.

How you can help

You can help by increasing your own knowledge about the contaminated blood disaster and making sure other people hear about it too.  There are summaries on the Haemophilia Scotland website and the Penrose Report can be downloaded online.  However, a great way of understanding the impact of the disaster is to watch the powerful Dogstar play, Factor 9.  You’ll need the password “Inverness” to view it.

Factor 9 on Vimeo

The password is “Inverness”

Secondly, some of the bereaved families are working together to construct a lasting memorial to the victims of the contaminated blood disaster in Scotland.  Their fundraising is going extremely well but continued efforts are needed if their loved ones are to get the fitting memorial they deserve.  Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate a tenner your text should read “CBME23 £10”.

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Scottish Government launches targeted campaign to trace contaminated blood cases

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The lone recommendation of the Penrose Inquiry final report was that Hepatitis C testing should be offered to individuals who may have been exposed to Hepatitis C via blood or blood products before September 1991, who have not already been tested.

Our CEO, Dan Farthing-Sykes, served on a Short-Life Working Group, commissioned by Scottish Government which estimated the numbers of living undiagnosed people and recommend any further action that should be taken to try to identify them. In its report, the Short-Life Working Group recommended a targeted awareness campaign to encourage those who may have had a blood transfusion before September 1991 to come forward for testing. It is estimated that 32 people who received a blood transfusion in Scotland before September 1991 were infected with Hepatitis C and are still alive and have not yet been tested.

A public information notice was launched today (10th of October)  to encourage the undiagnosed group to come forward for advice and testing if they have not done so already.    Around 400,000 posters and leaflets are being distributed to GP surgeries, hospitals, care homes, pharmacies and other community buildings across Scotland. The Chief Medical Officer Dr Catherine Calderwood has also sent a letter to clinicians to remind them of the need to offer Hepatitis C tests to certain at-risk groups.  A different approach is being developed to trace any potential cases of people with bleeding disorders.

Anyone who knows, or suspects they may have received a blood transfusion before 1 September 1991, and thinks they might be at risk, should call the Hepatitis helpline on 0800 22 44 88 or speak to their GP practice.  

Health Secretary Shona Robison said:

The working group which we established to look into this estimated that the number of people infected with Hepatitis C via transfusion who have still not been diagnosed will be very small. However, it is possible there may be some people with mild symptoms who are living with this illness and don’t know it. There have been efforts to trace them in the past, but we want to make sure that everything possible is done to find those still undiagnosed.shona-robison

The good news is that treatments for Hepatitis C have advanced enormously in recent years, so it really is vital that people come forward.

The Scottish Government is absolutely committed to do all we can to help the people affected by this terrible chapter in the history of our health service. We remain the only country in the UK to have held a full public inquiry and I’m proud that we are taking steps to improve the financial support available to those infected, and their families.

Scottish Government takes action to find #ContaminatedBlood missing cases

Penrose Publication

The Penrose Inquiry into the infection of people with Hepatitis C / HIV from NHS treatment was published its Final Report on March 25, 2015.

Lord Penrose made just one recommendation that,

the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV

In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.

Today, the Scottish Government has published the report it received from the Penrose Short-Life Working Group and issued a press release.

The group unanimously made three recommendations,

  1. Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.
  2. The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested. 
  3. A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.

All three recommendations of the Short-Life Working Group are being implemented by the Scottish Government, with work already well underway.  The public awareness campaign, for example, is due to be launched later this month.

 

Shona Robison in the Scottish Parliament

Image by © Ken Jack/Demotix/Corbis

Cabinet Secretary for Health, Wellbeing, and Sport, Shona Robison MSP has said,

…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.

Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,

Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2.  The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance.  They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.

I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process.  That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’.  In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account.  This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past.  Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.

More information

The full report and the data supporting it can be found on the Scottish Government website.

The Scottish Government have also issued a press release with further information on the implementation.

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