Author Archives: Dan Farthing-Sykes

Ground-breaking severe Haemophilia A gene therapy results offer hope of new future

dna-double-helix.jpg

Today’s report, AAV5–Factor VIII Gene Transfer in Severe Hemophilia A, in the New England Journal of Medicine offers the prospect of people with severe Haemophilia A taking a single injection and achieving clotting factor levels of mild or moderate patients.  This could mean huge reductions in use of clotting factor replacement products.

Dan Farthing-Sykes, CEO of Haemophilia Scotland responded saying,

These results are a huge achievement and offer someone born with Haemophilia today the prospect of a life without regular infusions.  I am struck by the bravery of all of those who have volunteered to be part of this and similar gene therapy trials.  Without their courage the amazing results achieved in studies like this would not be possible. Our thanks and congratulations go to everyone involved in this important work.

Many Haemophilia Scotland members will be excited by the prospect of a step-change in treatment.  However, as with all new medicines, they will want to see these results repeated in larger studies and be assured that the treatment is as safe as possible, as well as being free from harmful side effects.

This breakthrough will require clinicians, patients, and Governments to work together to make sure patients are able to benefit fully.  We will need to know if the therapy will continue working for the rest of a patient’s life. What levels of standard treatment might still be needed to keep all patients bleed-free or to respond to trauma? Gene therapy might also require new and innovative funding models to make sure that all the patients who might benefit are able to access it.

Read more reactions at,

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.

 

Thinking of our international friends on St Andrew’s Day

Russian Visit

Richard Lyle MSP and the then First Minister, Alex Salmond, meet the Russians delegation at the Scottish Parliament during their stay in Scotland. Also featured are Haemophilia Scotland Chairman Bill Wright and our Honorary President, Susan Warren, who organised the Russian group’s visit and was our Vice-Chair at the time. 

St Andrew isn’t just the patron state of Scotland, he is also the patron saint of Barbados, Romania, Russia, and the Ukraine.

So today seems like a good moment to look back to 2013 when Haemophilia Scotland played host to a group of about a dozen young Russian men with bleeding disorders.

They were successful finalists in a competition where the prize was a two-week visit to the UK. The once-in-a-lifetime opportunity enabled about many of them to travel abroad for the first time.

They spent time in London and Scotland, meeting other people affected by bleeding disorders and enjoying new experiences. While in Scotland they visited the Scottish Parliament in Holyrood, where they met First Minister Alex Salmond (pictured above). In Inverness they took part in a traditional ceilidh. Susan Warren looked after the group throughout their time in the UK and made them very welcome.

We were a relatively new charity at the time but have maintained our commitment to playing our part in the international family of bleeding disorders charities.  That is one of the reasons we are so excited to have the WFH Congress coming to Glasgow in May next year and are delighted that our Women’s Group will be hosting the Women’s Booth at the conference.  We are particularly proud of our recent Malawi Diagnosis Project with our friends in the Society of Allied Bleeding Disorders in Malawi too.

If you’d like to know more about how bleeding disorders are experienced in other countries, these are the patient organisations in those who share Scotland’s national saint.

 

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 statement ahead of meeting with Bishop James Jones

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

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

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

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

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

Joint Contaminated Blood and Blood Products Campaign Meeting Report

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

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

The clear view of the meeting was that,

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

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

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

BREAKING NEWS

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

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