Category Archives: HIV

July 14th campaign meeting to cover the Scottish Scheme and the UK Inquiry

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We are holding another joint members’ meeting with the Scottish Infected Blood Forum on Saturday July 14th at the Mercure City Hotel in Glasgow from 11:30am to 4:30pm.

Recent meetings have focused on either the Scottish Infected Blood Support Scheme (SIBSS) or the UK Infected Blood Inquiry.  This meeting is unusual as it will cover both.

We are expecting that by 14 July the Clinical Review Group Report will have been published.  The meeting will let us come together and respond to it.  The Scottish Government know we are meeting and will use any feedback from the meeting to inform their response to the report.  The terms of reference for the group means the report will be of most relevance to those in the current Chronic (Stage 1) category, including the widows.

The Secretary to the Infected Blood Inquiry has also agreed to come to the meeting to give affected people in Scotland up to date information and an opportunity to ask questions.

Because the meeting is longer than usual we have decided to provide a light lunch.  However, we have very limited funds so will only be able to provide lunch for those who register in advance.  So if you’d like to join us please register today.

REGISTER TODAY

#InfectedBloodInquiry Update and Clarification

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The Infected Blood Inquiry emailed Haemophilia Scotland and others today to provide an update following the close of the terms of reference consultation.

The consultation on the terms of reference closed last Thursday and the team has started work on analysing the responses we have received online, by letter, in emails, by phone and at meetings. On Tuesday Sir Brian Langstaff started work as full time chair of the Inquiry and is very grateful for your contributions to the terms of reference, including at the meetings with him during the consultation period.

They have also clarified that the Inquiry will cover all of those infected by contaminated blood or blood products.  This is the same approach to the different routes of infection that was taken by the Penrose Inquiry.  In Scotland, since the Penrose Inquiry, we’ve been working closely with those infected by blood transfusion as part of our relationship with the Scottish Infected Blood Forum.

I’m getting in touch today because I heard that following this Monday’s Victoria Derbyshire programme there had been some concern about how the full range of people affected by the infected blood scandal have been described. As Sir Brian made clear in his meetings with different campaign groups, the Inquiry will be investigating what happened to all those people who were infected, whether they were haemophiliacs or not, and also considering the impact on families.

The Inquiry has also indicated it is interested in holding further meetings to give more people the opportunity to engage.   We are already in touch with the Inquiry to look at ways of making sure people in Scotland have the chance to take up this opportunity.  We will give you more details as soon as we can.

The inquiry team is now starting to consider how we can best engage with the wide range of people affected as we go through the Inquiry process. Andy Burnham, the Mayor of Greater Manchester, has invited the team to meet affected people who have been in contact with him. This will be an opportunity for them to hear first hand how the Inquiry will work and to give their views about how they would like to engage with the Inquiry.

We would like to hold some more meetings outside London to get views on how people would like to engage with the Inquiry, including from people who have not yet had the opportunity to meet the team, so please let me know if you would like to suggest a particular location, and/or a group of people to meet. And of course, please don’t hesitate to get in touch with any other questions related to the Inquiry, and I hope you will share this note with your wider range of contacts.

They have also provided information about their new offices.  This is where the administration of the Inquiry will take place but it does not have the facilities to hold any of the oral hearings.  The oral hearings will be held in other locations.

Finally, you might like to know that we have now moved into the Inquiry office premises which are close to St Paul’s Cathedral,
Fleetbank House
1st Floor
2-6 Salisbury  Square
London
EC4Y 8AE

 

Joint Response to #InfectedBloodInquiry Consultation Submitted

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Fleetbank House

Fleetbank House, where the Infected Blood Inquiry is based.

Haemophilia Scotland, the Scottish Infected Blood Forum (SIBF), and independent Scottish campaigners made a joint response to the Infected Blood Inquiry Terms of Reference Consultation.

Joint Scottish Terms of Reference Consultation Response

Scottish campaigners and campaigning charities were brought together through the Penrose Inquiry process and working with Thompsons Solicitors and have continued working closely ever since. The consultation response builds on the joint position statement which we published in October.

We are grateful to everyone in Scotland who has contributed to these documents by working on them directly or by,

  • attending our joint members’ campaign meetings, in particular the meeting in Edinburgh on Sat 21st April which looked at the consultation questions in detail.
  • emailing or calling the charities, and other campaigners, to make their views know.
  • taking part in discussions on our closed Facebook group.

We are also grateful to Sir Brian Langstaff (Inquiry Chair), Brian Stanton (Solicitor to the Inquiry), and Catherine Nalty (Deputy Secretary to the Inquiry) for coming to Scotland to meet with us on Monday this week.  We have a useful and constructive discussion covering many off the issues detailed in our consultation response.

We do not claim that the consultation response represent the views of every affected person in Scotland.  However, we have tried to accurately reflect the issues that have been raised with us and highlight some of the lessons we believe should be learnt from our collective experience of the Penrose Inquiry.

 

Langstaff Inquiry launches website and consultation on Terms of Reference

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The statutory Public Inquiry into infected blood and blood products, under Sir Brian Langstaff, has just launched it’s website at www.infectedbloodinquiry.org.uk

The site gives some high level details about the Inquiry and a little more information about Sir Brian Langstaff.  However, the main content at the moment is a consultation on the Terms of Reference for the Inquiry.  The consultation was launched at the end of yesterday and runs until 26 April.

On the Inquiry website you will find,

Haemophilia Scotland will be working with independent campaigners in Scotland and the Scottish Infected Blood Forum (SIBF) to make a consultation response highlighting the Scottish dimensions to the consultation questions.  As well as using the Scottish Position Paper we published in October, we will be holding a joint members meeting so that everyone in Scotland can discuss the issues raised by the Inquiry consultation together.  We will publicise the details of that meeting as soon as it is confirmed.

 

Sir Brian Langstaff appointed as Chair of UK Inquiry

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Today, The Rt Hon David Lidington MP, Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office, used a written statement in the House of Commons to announce that the Chair of the UK Statutory Public Inquiry into contaminated blood and blood products will be Sir Brian Langstaff.

Sir Brian is 69 years old and has will be full time on the Public Inquiry from 1 May 2018, when he retires as a High Court of Justice of England and Wales. However, consultation work on the Terms of Reference for the Inquiry will be conducted before then.

Sir Brian went to school in Edinburgh and was the School Captain at George Heriot’s School in 1966.  He was leading Leading Counsel for the Bristol Royal Infirmary Inquiry.

The Government written statement said,

I am announcing today the appointment of Sir Brian Langstaff to head the public inquiry into the Infected Blood scandal. The inquiry will be established under the 2005 Inquiries Act, with full powers, including the power to compel the ​production of documents, and to summon witnesses to give evidence on oath.

In relation to the appointment of the Chair, the Lord Chief Justice was asked to recommend a judge who, in his view, would be best suited to the task. The Lord Chief Justice recommended Sir Brian Langstaff: a highly respected and hugely experienced High Court judge. I have accepted the Lord Chief Justice’s recommendation.

Sir Brian will be the full time Chair of the Inquiry from 1 May following his retirement from the High Court. However, in order that those who have been affected by this tragedy face no further undue delay, he will use the intervening period to conduct a further consultation on the Inquiry’s Terms of Reference

The infected blood scandal of the ’70s and ’80s was an appalling tragedy that should never have happened. The victims of this tragedy who have endured so much pain and hardship deserve answers. It is crucial that their views are properly reflected in the Inquiry’s Terms of Reference. He will want to listen carefully to the voices of those that have suffered before making a recommendation to me on what the scope of the Inquiry should be. I will return to Parliament with the final terms of reference as soon as this process has been completed.

The Government will ensure that the inquiry has the resources that it needs to complete its work. The Inquiry will, of course, also be independent of the Government.

It is very important that the Inquiry can identify why and how this tragedy occurred and provide answers for the all victims who have suffered so terribly, and can identify lessons to be learned so that a tragedy of this scale can never happen again.

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The High Court of Justice of England and Wales

Lessons to be learned for panel of Infected Blood Inquiry

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Today, the Cabinet Office made a statement on the upcoming Infected Blood Inquiry.  They said,

As the Government announced last month, a full statutory inquiry into the infected blood scandal will be established under the 2005 Inquiries Act, and sponsored by the Cabinet Office. The inquiry will have full powers, including the power to compel the production of documents, and to summon witnesses to give evidence on oath.

We are today setting out the next steps.

The Cabinet Office has now completed its analysis of the responses to the consultation on the format of the statutory Inquiry into infected blood announced in July. In addition a series of roundtable meetings were held earlier this month with individuals and groups representing those affected.

The Government committed to making an announcement regarding the Chair of the inquiry before Christmas, taking into account the views we have received. We are therefore announcing today our intention to appoint a judge to Chair the inquiry. We will make a further statement on who that judge will be in the New Year and we will be discussing with them the composition of the Inquiry panel.

We would like to thank each and every person who took the time to respond to the consultation, and to share their views and experiences. We understand how difficult these issues must have been to describe and we a

re grateful for the frankness and honesty with which people have shared their experiences. The responses to the consultation have been carefully considered by Cabinet Office officials. We can assure the House and everyone who contributed that the findings will be passed to the proposed Chair to help inform the discussions regarding the draft Terms of Reference, on which we expect there will be further consultation.

In accordance with the Inquiries Act 2005, colleagues in the Devolved Administrations will be consulted as the Terms of Reference are finalised.

A further statement will be made in the New Year.

Haemophilia Scotland has responded by appealing for Inquiry Panel Members who are able to fully dedicate themselves to challenging role.

We have cautiously welcomed the UK Government’s announcement on appointment of  a chair and panel, stressing the lessons we learned from the six-year long Penrose Inquiry in Scotland.

Haemophilia Scotland Chair, Bill Wright, has said,

In view of the forced resignation of the First Secretary it remains vital that the right Chair and Panel are appointed to lead the Inquiry. When we recently met Mr Green and senior officials in the Cabinet Office it was evident that substantial work had been done but there were still significant decisions to be made. Given that under the Inquiries Act, there are very clear duties upon Ministers in reporting plans to Parliament, appointing a panel and defining Terms of Reference and a setting up date we trust that discussions to appoint potential Panel members are ongoing with Officials. We look forward to meeting with Mr Green’s replacement.

The Panel members and Chair need to be not only able, but also very willing, to take on a formidable task. It is therefore no surprise, from the experience we had in Scotland, that time is having to be allowed to ensure that panel members are not pressed into positions they are reluctant to accept. Instead they need to be willing to ta

ke on an onerous role and dedicate themselves to it over potentially a number of years without alternative distraction. We have waited decades for this Inquiry. We now need the best people to lead it, in terms of appointing Minister, Panel, Chair, assessors and supporting staff.

Today’s announcement makes the upcoming joint campaign meeting with the Scottish Infected Blood Forum on 20th January in Glasgow even more important.  The meeting will be the first opportunity affected people in Scotland will have to come together and discuss our collective view since the announcement.  If you are planning to attend please register so we can make sure we have a large enough room to accommodate everyone.

 

Cabinet Office

Meeting with Damian Green ‘positive and cordial’

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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.

 

Remembering on World AIDS Day

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This World AIDS Day, Haemophilia Scotland is remembering those we have lost to the virus and thinking of their families and friends.  We are also thinking of our members who fight the virus on a daily basis.  Our long term survivors and their loved ones are living with the consequences of the contaminated blood disaster.

World AIDS Day is an international day to remember those who have died because of AIDS, to prevent new cases of HIV and to stand in solidarity with people living with the virus.

This year, charity partners and NHS partners are challenging us with the question of “What will you do?”

  • What will you do to remember those who have died because of AIDS?
  • What will you do to prevent new cases of HIV?
  • What will you do to challenge stigma and prejudice?

One of the ways that we remember those who have died because of AIDS is through the Contaminated Blood Memorial Fund. The Fund is bringing bereaved families together to plan, and raise money for, a lasting memorial to those who have died as a result of the contaminated blood disaster in Scotland.

To contribute to the Memorial Fund, you can:

  • Donate online at www.justgiving.com/contaminatedbloodmemorialfund.
  • Text CBME23 to 70070. The standard donation is £10 but you can give less or more by adding an amount to your text. For example, to give £20, you text “CMBE23 £20” to 70070.

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

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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

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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.

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