Category Archives: Penrose Inquiry

Meeting with Damian Green ‘positive and cordial’

Going in

Bill Wright, Chair of Haemophilia Scotland, and Lynne Kelly, Chair of Haemophilia Wales on their way into the Cabinet Office to meet The Rt Hon Damian Green MP, who is the minister responsible for establishing the contaminated blood and blood products public Inquiry.

Bill Wright, Chair of Haemophilia Scotland, today joined representatives from groups campaigning on the contaminated blood and blood products campaign issue across the UK in London to meet The Rt Hon Damian Green MP, First Secretary of State, to discuss the upcoming Public Inquiry.

There were two meetings (morning and afternoon) and organisations were limited to a single representative so that there would be time for everyone who attended to speak. Bill attended on behalf of Haemophilia Scotland in the afternoon meeting which included representatives from,

The meeting was told to expect an announcement on who would be the Chair and on any panel before Christmas.  No specifics on the Terms of Reference (ToR) were discussed but they are likely to be published in draft with the opportunity to comment on them in early 2018.  The Cabinet Office were asked to provide funding for the relevant legal teams to be able to assist affected people with feeding into that process.

Bill highlighted the importance of having a Panel as described by Section 3 (1) (b) of the Inquires Act as an Inquiry being conducted “by a chairman with one or more other members.”  This sort of panel would have shared responsibility for conducting the Inquiry and signing off the report (as detailed in Section 24 (4) of the Inquiries Act).  We consider this is vital to having a fast paced Inquiry with the appropriate expertise and openness while avoiding the difficulties we faced during the Penrose Inquiry.

To help emphasise the importance of engaging with all affected people around the UK, Bill also referred to Section 18 (1) of the Inquiries Act to argue for the proceedings to be streamed live online.  This is vital to make sure that those who cannot travel because of poor health, finances, geography, or other responsibilities can “see and hear a simultaneous transmission of proceedings at the inquiry.”

Commenting straight after the meeting Bill Wright, Chair of Haemophilia Scotland, said,

We had a positive and cordial meeting. Damian Green confirmed a Chair will be announced before Christmas but further members of the panel may not be announced until the new year.

There was general agreement on the pace of proceedings from now on. It was acknowledged that the next stage and the Inquiry itself must be opened up much more widely than those who attended. Much work remains to be done but this was a good step forward.

Passing bus

Selfies aren’t as easy as they look when you are trying to focus on the upcoming meeting.

 

UK Inquiry: The Scottish position and how to register for more information

Cabinet Table

Apologies for the longer than usual post but a lot has been going on in the run up to last week’s statement from the Prime Minister that the UK Contaminated Blood Inquiry was to be a Statutory Inquiry overseen by the Cabinet Office. 

Firstly, thank you to the many members of Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) who have come to recent campaign meetings and spoken to us about what they’d like to see from the UK Public Inquiry.

Using your comment, and our experience of the Penrose Inquiry, we have developed a joint position statement  which we believe reflects the views of the majority of affected people in Scotland.  We sent a copy to the UK Government on 11th October.

The Executive Summary summarises our position,

We support the establishment of an UK Public Inquiry and are proposing it has the following features,

1. The Inquiry be consulted on and established by the Cabinet Office or Ministry of Justice.

2. A statutory Inquiry under the 2005 Inquiries Act.

3. The Inquiry to be led by a Chair and Panel, rather than a Chair alone.

4. That there are Scottish Core Participants with Scottish legal representation.

5. The procedures of the Inquiry to be flexible and responsive to the needs of those infected including,
a) Those that wish to are able to give oral evidence.
b) Hearings are held in locations throughout the UK at accessible venues.
c) Proceedings are streamed live online.
d) The questions that affected people want to be asked can be put.
e) The privacy of those affected is protected.
f) Different topics should be investigated simultaneously, potentially under different members of the Panel, to allow the Inquiry to proceed quickly and make interim recommendations.

6. Terms of Reference that include,
i) All infections and pathogens.
ii) All use of plasma derived clotting factor products.
iii) Accountability and responsibility.
iv) Consent, communications, and risks.
v) Blood donor selection.
vi) Blood product selection.
vii) Impact on those affected.
viii) Access to justice.

We also provided a copy to the Scottish Government so that they had a clear understanding of the views of people in Scotland when they we discussing the Inquiry with the UK Government.

shona-robisonShona Robison MSP, Cabinet Secretary for Health and Sport then met with Haemophilia Scotland and the SIBF.  She told us there had been a ministerial level conference call with Jackie Doyle-Price MP, which had discussed these issues.  We also talked about next steps including a proposed letter from the Cabinet Secretary to the Prime Minister.

Her letter to the Prime Minister, sent shortly after the meeting, raised the following points. It,

  1. Supported a Statutory Inquiry.
  2. Supported having a Panel rather than having a single Chair.
  3. Called for the Panel to have a say on the Terms of Reference having listened to those affected. She also asked for clarity over the process for setting the Terms of Reference and stressed the importance of building on the work of the Penrose Inquiry rather than duplicating it.
  4. Called for the Scottish Government, Haemophilia Scotland, and the Scottish Infected Blood Forum should be Core Participants of the Inquiry with legal representation.
  5. Urged that the Inquiry should be established as quickly as possible.

There has also been progress on legal issues.  At the recent joint Haemophilia Scotland / Scottish Infected Blood Forum members’ meeting we were pleased to announced an even closer working relationship with our legal team of Thompsons Solicitors, Simon Di Rollo QC, and Jamie Dawson.

PMcGuire-square-smallThompsons Solicitors have launched a new website so that affected people in Scotland can sign up for regular updates on the contaminated blood and blood products campaigning work of Haemophilia Scotland, SIBF, and Thompsons Solicitors.

You can register online at contaminatedbloodregister.co.uk or over the phone by calling 0800 081 0072.

At the meeting there was also an extremely useful discussion about the experience of people using the new Scottish Infected Blood Support Scheme.  We will be working on these issues together and using them to prepare for the first periodic review of the scheme.

David GoldbergWe are also preparing for the start of the Clinical Review to be chaired by Prof. David Goldberg.  The group has been established by the Scottish Government as part of the implementation of the Financial Review Group recommendations.  The review will look at how to change the criteria from moving from the chronic to advanced levels of financial support from liver damage to whole health impact, how to assess whether a death is related to the virus for assessing entitlement to widow’s pension payments; and looking at the wider impact of chronic hepatitis C infection.

The review is being conducted in four streams,

  1. Describing characteristics of those at the chronic hepatitis C infection stage (previous stage 1).
  2. Examining latest scientific literature, in particular on chronic hepatitis C.
  3. Direct evidence from a random sample of Scottish people with chronic hepatitis C and widow(ers).
  4. Evidence on impact on health and wellbeing of those with chronic hepatitis C from a clinical and medical perspective.

The first meeting of the clinical review is scheduled for the end of November this year.

Response to Prime Ministerial statement on Contaminated Blood and Blood Products Inquiry

Theresa May

Today there have been media reports that the Prime Minister has announced more details about the UK Public Inquiry into contaminated blood and blood products.

A spokesperson for the Prime Minister has confirmed that it is the intention of the Government for the Cabinet Office to establish a Statutory Inquiry.

Haemophilia Scotland CEO, Dan Farthing-Sykes responded to today’s statement saying,

In Scotland we have been calling for a statutory Inquiry under a panel rather than a lone Chair.  We also called for a department other than the Department of Health to establish the Inquiry and that the Inquiry provides for Scottish Core Participants with Scottish legal representation.

As a result, today’s statement from the Prime Minister is a welcome step in the right direction.  We are pleased that she has listened to the concerns of affected individuals and families and will hold a Statutory Inquiry established by the Cabinet Office.

However, perhaps the most important decisions still have to be taken.  We must have the right people appointed to the Inquiry panel and Terms of Reference which have the confidence of our community.  That can only be achieved by working with those affected.

The Terms of Reference must include both the events running up to the infections and the response to them.  The time frame must be long enough to cover all the infections associated with pooled plasma products including hepatitis B and CJD.  The unfinished business from the Penrose Inquiry must be completed.  The Penrose Report established important facts about the infections in Scotland but failed to follow them up with appropriate analysis or recommendations for the future. 

It will be extremely painful for those infected and their families to go through an Inquiry.  For many it will involve reliving the most painful memories.  It’s vital that they have appropriate support through the process and that their renewed suffering leads to concrete action.

It is hoped that a fuller statement will be laid in the House of Commons soon.

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

Joint_Members_Meeting-960x750_edited

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

 

britain

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

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