Category Archives: Contaminated Blood

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

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

£7030 donated by Harburn Golf Club

Bill & Harburn Golf Club

Bill Wright (our Chair) accepts the cheque from Allan, Dougie, Linda, & Benny (right to left)

Haemophilia Scotland is immensely grateful to Benny, Dougie and Allan and all the members of Harburn Golf Club, after their recent amazing donation of £7030 towards the planned Contaminated Blood Memorial. We are delighted at this continued generosity from the Club and its’ members towards this fund. It sounds like the Texas Scramble for the golfers and the celebratory evening dinner was enjoyed by all.

We would also like to extend particular thanks to the many local businesses in West Calder who were so generous with sponsorship and support for the event; as were many other golf clubs across the country who donated prizes.

Huge thanks once again to Harburn Golf Club – this has really helped take the Contaminated Blood Memorial Fund much further forward towards its goal.

#InfectedBloodInquiry Update and Clarification

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

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.

 

Sir Brian Langstaff introduces himself to those affected by contaminated blood and blood products

Sir Brian Langstaff, Chair of the Infected Blood Inquiry, is writing a letter to everyone affected by the contaminated blood and blood products disaster.  In Scotland, the letter is being sent out by the Scottish Infected Blood Support Scheme.

READ THE LETTER FROM SIR BRIAN LANGSTAFF

Haemophilia Scotland has agreed to help get the letter out to those affected who are not eligible for financial support but were still affected.  We know there are people who don’t have enough surviving medical records to get support from the current schemes; often referred to as the Stage Zeros.  We also think there will be bereaved families who aren’t registered.  We would be very grateful if everyone reading this post could pass on a copy of the letter to anyone they think might be otherwise be missed.

The covering letter from the Inquiry team says,

In February 2018 Sir Brian Langstaff, a highly experienced High Court judge, was appointed to Chair the Inquiry and a team is being established to support this important work. 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 people 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. We are very grateful to people who have already provided contributions and would encourage others to do so.

Sir Brian has written an introductory letter to all victims of this tragedy. This
letter, a copy of which is attached, sets out his determination to put people at
the heart of the Inquiry and contains details of the consultation on the terms of
reference. Further details on the consultation can be found at www.infectedbloodinquiry.org.uk. Copies of the key consultation documents
are also attached for those who may have problems accessing the internet.

We have asked the scheme you are registered with to send this letter to you.
Your details have not been shared with us. If you would like to receive further
information on the Inquiry please do consult the website or feel free to contact
us at contact@infectedbloodinquiry.org.uk or on our freephone number 0808
169 1377.

Infected Blood Inquiry Team

Haemophilia Scotland, the SIBF, and independent campaigners in Scotland are working together to develop a response to the Inquiry’s Terms of Reference Consultation. This will be discussed at a members’ campaigns meeting at the Apex Haymarket in Edinburgh on the 21st of April.  A small group will then meet with Sir Brian Langstaff and his team to put forward our views.

Meanwhile, if you have any points that you’d like to be included in the Scottish response to the consultation please email dan@haemophilia.scot and/or tommy@sibf.org.uk.

Shona Robison MSP sees call for lump sum for Stage 1 Widows

In January, Haemophilia Scotland and the Scottish Infected Blood Forum wrote to Shona Robison MSP to call for the widows at Chronic / Stage 1 to be entitled to the same lump sum payment as those who survived.

When the Scottish Government increased the Stage 1 / Chronic survivors lump sum from £20,000 to £50,000 the lump sum for widows was left unchanged. This leaves the households who lost someone before the changes £30,000 worse off than those where the infected person lived longer.  In our letter we called for this issue to be address independently of the work of the Prof. Goldberg’s Clinical Review Group.

shona-robisonIn her reply Shona Robison MSP said,

Though I agree it is important that we consider this further, I do not see the additional lump sum for Stage 1 widows and widowers as a separate issue to the ongoing review.  In my view, this proposal should be considered in the light of the conclusions and recommendations of the forthcoming review.

It had already been agreed that the patient representatives on the Clinical Review Group will put forward companion recommendations covering how the report recommendations could be implemented financially.  Last Friday, Haemophilia Scotland and the Scottish Infected Blood Forum met and agreed that we will be including the lump sum for Stage 1 widows in that report.

Langstaff Inquiry launches website and consultation on Terms of Reference

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

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.

Royal_Courts_of_Justice_of_Eng_Wal

The High Court of Justice of England and Wales

Lessons to be learned for panel of Infected Blood Inquiry

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’

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.

 

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