Today The Birchgrove Group joined with other contaminated blood campaign organisations in declining an invitation from the Department of Health to meet with them so as to begin to 'determine the format and scope' of the recently announced inquiry.
It is the firm belief of campaign organisations and their members that the Department of Heath have no part in setting up, administering or indeed determining the format and scope of any inquiry in which its actions are of significant interest to that inquiry's investigations. To do so would be a huge conflict of interest and the Birchgrove Group is deeply concerend that such a meeting has even been called by the Department of Health when this conflict of interest is so apparent.
We welcome the inquiry and the Prime Minister's commitment to work with campaign groups to decide on the appropriate format of the inquiry. We will fully engage and co-operate with this process when an appropriate independent and neutral body is appointed.
Today the Government announced it will be implementing an inquiry into contaminated blood. At this time there are few details beyond this short announcement but it is a landmark moment in what has been a 30 year campaign.
There is a long list of MPs who have supported our community and they all have our sincere thanks. But a special thank you must go to Diana Johnson, Andy Burnham and Alistair Burt who have over the last few years spearheaded the campaign within Westminster. Without their support this day would not have happened.
This past week has seen unprecedented support and media coverage of the contaminated blood products scandal. With mainstream media running pieces highlighting the issues and concerns around when risks where actually known, withholding of test results and doctoring of patient records it now seems the message is finally getting through.
This has now culminated in a letter to the Prime Minister, co-ordinated by Diana Johnson MP, that was signed by all other party leaders within the House of Commons calling for a public inquiry into the contaminated blood scandal. And today, Diana Johnson again raised the issue in Parliament and secured a 3 hour debate calling for an inqury to take place tomorrow, Tuesday 11th July.
The Birchgrove Group would ask that anyone who has been affected by this issue and wants to know the truth about what happened to contact their MP and ask them to attend tomorrows debate and support the motion for an inquiry.
Tonight the BBC broadcast a 60 minute documentary into contaminated blood. The documentary showed compelling evidence that the infections of haemophiliacs with HIV and hepatitis c and b could have been avoided if the Government had acted on warnings and pursued a policy of self sufficency in donated blood.
The Haemophilia Society has today written to the Prime Minister once again calling for a full Public Inquiry into the contaminated blood scandal. The Birchgrove Group is a signatory to this letter and fully backs the Haemophilia Society's call.
The Birchgrove Group would like to congratulate contaminated blood campaign supporter, Andy Burnham, on being elected Mayor of Manchester.
The former MP and Health Secretary used his last speech in Parliament on April 25th to call for a Hillsborough style inquiry into the contaminated blood scandal in which he belives the true extent has been covered up. He also pledged to take his dossier of evidence to the police if the Government do not instigate an inquiry before the summer recess of Parliament.
To date the Government have not moved from their current stance that an inquiry is not necessary.
We wish Andy Burnham well in his new role and thank him again for his continued support.
Today the Birchgrove Group wishes to thank Andy Burnham MP for calling for a Hillborough style investagtion into contaminated blood and what he calls an "orchestrated campaign to prevent the truth being told".
In his last speech in Parliament before standing down as an MP Andy Burnham cited evidence of testing without consent, unacceptable delays in informing individuals of test results and alledged what he believes has been a systematic cover up of the true scale and nature of the contaminated blood scandal in the UK. He went on to call for the Government to instigate a Hillborough style investigation so that the truth can finally be bought into public domain. If the Government refuse he pledged to take the dossier of evidence he has gathered to the police so that a criminal investigation can be held.
The Birchgrove Group today welcomes the statement released by the Haemophilia Socitey in support of those with a bleeding disorder affected by contaminated blood.
Read the full statement - Statement by the Board of Trustees of the Haemophilia Society on Contaminated Blood
We welcome the Society's call for support levels equal to those agreed in Scotland and that implementation of such support should not be delayed by, or be a barrier to, getting a full public inquiry.
The Birchgrove Group is disappointed to see that yet another consultation and new proposals have been issued by the Department of Health which again could negatively impact those affected by HIV/AIDS from contaminated blood.
This new consultation and proposals, if they go ahead, would make substantive changes to the scheme which was announced in July 2016.
These proposals appear to be a way to address the disparity in payments to hep c stage 1 beneficiaries. The consultation is proposing a 'Special Catagory Mechanism' (SCM) designed to assess if those with stage 1 hep c are impacted enough to receive the annual payment levels of stage 2. This would effectively establish a new interim stage that provides the annual payments of stage 2 but not the additional £50k lump sum.
However the new proposals do little to reassure others affected by contaminated blood that they will not be negatively impacted by additional aspects of these proposals should they go ahead.
There are proposals to not proceed with previously announced increases to annual payments for 2018/19 but instead refer people to the SCM when it is up and running. For those not eligible for the SCM, such as those living with HIV only, the previously announced increase of £3000 may now not happen and as such a small but hugely impacted section of our community will not see any real world increase in support. For those already living with HIV and stage 2 hep c they could see £6000 pounds worth of previously announced increases now not happen.
The consultation gives no detail as to how the SCM will ascertain which condition, HIV, hep C or a bleeding disorder, is repsonsible for symptoms. It asks two questions:
"Does your hepatitis C infection or its treatment make it difficult for you to carry out regular daily activities, such as leaving your home, using public transport or shopping for essentials, as a result of mental health problems (such as feeling depressed or anxious)? and Does your hepatitis C infection or its treatment make it difficult for you to carry out regular daily activities, such as walking more than 50 metres, climbing stairs, lifting objects from the ground or a work surface in the kitchen or physical tasks such as gardening as a result of chronic fatigue (such as feeling tired all of the time)?"
All those living with co-infection and a bleeding disorder will be familiar with these symptoms, but identifying a definitive cause for the them is near impossible and is in all likely hood a combination of all three conditions. Therefore as the SCM is to look solely at hep c and its effects ("The scheme assessor will be looking to make a judgement as to whether the problem experienced is substantial and long-term, and whether it is related to the applicant’s hepatitis C infection (or its treatment).") those with co-infection may find it diffcult to provide sufficient evidence and medical opinion in regard to hep c infection despite experiencing significant physical and mental illness because of it, or in combination with other conditions.
There is also no mention of increasing the utterly inadequate £10k payment for those who have lost husbands and wives to contaminated blood, a group which appears to be perpetually forgotten by the Government here in England.
Regardless of if these latest proposals pass they still fall far short of what has been agreed in Scotland for the HIV/AIDS affected community and the proposal states clearly that the funding is in place only until 2021 when 'it will be for future Governments to decide on funding levels going forward', so there is no security or peace of mind for anyone regardless of which group they fall into.
While we agree the SCM and its aim of addressing the disparity in payments to those with hep c stage 1 is correct it appears to only be possible by withdrawing previously announced payments which highlights the fundamental flaw in contaminated blood support. The schemes have never been, currently are, and look to continue to be woefully underfunded. Until this is addressed, and is backed by legistlation guranteeing funding for the life of the scheme, there can be no solution that will be acceptable to all those affected by contaminated blood.
As such The Birchgrove Group has no choice but to reject this consultation and proposals and remain committed to achieving levels of support at least equal to those agreed in Scotland for those infected and affected by HIV/AIDS, co-infected with HIV/AIDS and hep C and their families.
The decision by the then Secretary of State for Health, Jeremy Hunt, to ignore the proposals for support planned for contaminated blood recipients in Scotland, in favour of the much less generous English proposals for English infectees and their widows, is facing a legal challenge from a member of the community.
Amanda Beesley, the complainant and a widow of an HIV/Hepatitis C co-infected Primary Beneficiary, is challenging the decision and its process via her solicitor, Denise Stephens at Access Legal.
Jeremy Hunt, who along with the Department of Health Complaints Manager has received notice of intent to challenge, has 14 days from the date of receipt of the letter before a Judicial Review is applied for.
In David Cameron's final Prime Minister's Questions he announced details of the new support scheme for contaminated blood vicitims in England.
Initial analysis indicates that those infected with and affected by HIV, or co-infected with HIV and Hep C, increases in support will be negligible, with potential for people to be worse off during the move to the new scheme. Lack of clarity on what discretionary support the new scheme administrator will provide also leaves great uncertainty that any new scheme will be an 'improvement'.
The new scheme falls far short of that agreed in Scotland where those infected with HIV, or co-infected, and their familes would see a much higher levels of support that would actually make a difference and ensure some peace of mind and financial security.
The Birchgrove Group feels it has little choice but to continue exploring all possible avenues in which to achieve equality with contaminated blood victims living in Scotland for the rest of the UK.
A new website and Facebook community page has recently been launched to support haemophliacs who identify as lesbian, gay, bisexaual or transgender. The LGBT community face unique issues around stigma, acceptance and equality on top of those already caused by having a bleeding disorder or being infected with HIV/AIDS and hepatitis through contaminated blood. Haemosexual is a valuable and welcome addition to the information and support groups available to the bleeding disorder community.
The Birchgrove Group has this past week written to Jane Ellison MP, Under Secretary of State for Public Health, to formally reject the proposals put forward by the UK Government in its recent consultation on support for those who have been infected and affected by NHS supplied contaminated blood and blood products.
The Birchgrove Group's rejection of the proposals is based on the simple fact that those infected with HIV/AIDS and co-infected with HIV/AIDS and hepatitis C will be considerably worse off if these proposals go ahead.
While there have been repeated statements from Ministers and Government that the views of the contaminated blood community and the responses to the consultation will be listened to the recent minutes of a meeting between Jane Ellison and the APPG on Haemophilia and Contaminated blood offer little indication that this will be the case.
The UK Government's protracted and overly bureaucratic process and eventual proposals are in stark contrast to the efficient methods and much more appropriate support levels of support being made available to those in Scotland. Such is the level of support already agreed for those infected with HIV/AIDS and co-infection with hep C in Scotland that the Birchgrove Group believe that nothing less than the Scottish solution is acceptable for those in England, Wales and Northern Ireland.
The Birchgrove Group is committed to pursuing this objective and will use all legal means in doing so.
There is going to be a protest against the proposed support reforms outside the Houses of Parliament on Tuesday April 12th.
This is to coincide with a Commons debate, Reform of Support Arrangements for People Infected with Contaminated Blood, which is due to start at 12.45 that day. For this protest to have any power we need the co-infected community to turn out on mass and add our voice to the many others infected and affected by contaminated blood.
If you are able please come to London and add you voice in rejecting the proposed reforms.
More information to follow.
This past Friday the Scottish Goverment announced it would be implementing recommendations that would give co-infected haemophiliacs and their familes financial security. While it is not compensation the new system is far and above what is currently being proposed by the British Government for English and Welsh co-infected haemophiliacs.
The British Government has, within the same timeframe as Scotland, only managed to offer a consultation on a set of proposals that if implemented will reduce the support to many English and Welsh co-infected haemophiliacs by many thousands of pounds and will see a year on year reduction in support as payments are no longer linked to the Consumer Price Index.
The gulf between the progress of the two governments and of the two sets of support, one of which is now going ahead, is staggering and completely unfathomable leaving the contaminated blood community wondering just what this Government will do next.
The Scottish Government have agreed to a payment system that would see a co-infected haemophiliac get £37k per year plus and additional lump sum of £30k to those who did not receive the full £50k payment for Hep C infection under the current scheme, thus ensuring all co-infected received the same. Widows/ partners would continue to receive 75% of the annual payment when the primary beneficiary passes away.
Westminster is asking people to comment on proposals that would see a co-infected haemophiliac receive a maximum of £15k per year for HIV infection with a possible maximum of £15k more IF they meet the relevant criteria of an assessment of their Hep C infection, the details of which are currently unknown. English and Welsh widows and partners get a maximum one off payment of £5000.
Scottland will also maintain and discretionary fund to give additional assistance and grants. The UK is proposing to abolish all discretionary support.
The proposed meeting at the memorial stone in Stratton Wood has regretably been postponed.
There are ongoing works to lay new pipelines that are currently running very close to the stone making access near impossible for those with mobility issues. Also the proximity of the works to the stone would seem to make the attempt of 'tidying up' the area mute point until heavy machinery and construction work has finished.
The contractors on site were understanding of the significance of the stone and have been careful to cordon off the stone and bench from works to protect it from the adjacent ground works.
We will arrange the meet up for later in the year when the works are complete and the wood is more peaceful.
A new campaign and action group specifically acting for the co-infected community and their infected partners.
The Forgotten Few has setup a new website with information and news about the ongoing campaign for justice for those haemophiliacs co-infected with HIV and Hep C.
Just after the Penrose Report was published the Prime Minister apologised on behalf of the Government to the vicitims of the contaminated blood tradgedy. He said:
“My honourable friend is absolutely right to raise this with the Penrose Report published today and I can do all of the three things he asked for.
I know that many members on all sides of this house have raised questions of infected blood. I’ve spoken about how constituents have been to my surgery. While it will be for the next Government to take account of these findings, it is right that we use this moment to recognise the pain and suffering experienced by people as a result of this tragedy.
It is difficult to imagine the feelings of unfairness that people must feel at being infected by something like Hepatitis C or HIV as a result of a totally unrelated treatment within the NHS and to each and every one of those people, I would like to say sorry on behalf of the Government for something that should not have happened.
No amount of money can ever fully make up for what did happen, but it’s vital we move as soon as possible to improve the way that payments are made to those infected by this blood. I can confirm today that the Government will provide up to £25m in 2015-16 to support any transitional arrangements to a better payment system and I commit that if I’m Prime Minister in May we will respond to the findings of this report as a matter of priority”.
The Leader of the Opposition, Ed Miliband replied:
“Mr Speaker, let me first say that I fully associate myself with the remarks the Prime Minister just made about the victims of infected blood and we undertake today to carry those recommendations forward as well”.
There followed a written statement from Jeremy Hunt, Secretary of State for Health, which went further to explain the Government's position.
The APPG on Contaminated Blood and Haemophilia also released a statement which is available on the Haemophilia Society website here.
Attached below is the latest update from Alistair Burt MP on the current progress of the contaminated blood campaign. In this latest release supportive MPs are calling on the Government to give an interim response to the upcoming publication of the Penrose Inquiry and for political parties to make manifesto pledges to continue efforts to bring closure to the contaminated blood tradgedy in the next parliament.
The Prime Minister today commited to attempt to address the many issues raised by those affected by contaminated blood should he remain as Prime Minister in the next Parliament. In a response to a question from Alistair Burt MP the Prime Minister acknowledged that it may never be possible to fully satisfy those who have been affected but said "as a wealthy, successful country we should be helping these people more, we will help these people more, we need Penrose first and if I am standing here after the next election it will be done".
Transcript of Alistair Burt's question and the Prime Minister's response:
Alistair Burt MP:
"On 25 March, the Penrose inquiry, which has been looking at the tragedy of contaminated blood in Scotland, will finally report. It is likely to have implications for the rest of the United Kingdom. The time scale means that it is highly unlikely that there will be a full response by this Government before the end of Parliament. Will my right hon. Friend, who has taken a great personal interest in this—as have more than 100 Members of this House—give an assurance that the matter will not slip from his or the Government’s agenda, and that as soon as possible in the new Parliament there will be an attempt at closing this terrible tragedy in our country?"
The Prime Minister:
"Let me first pay tribute to my right hon. Friend for leading on this issue. I suspect that, like me, every Member of Parliament has heard moving stories at their surgeries from constituents who have hepatitis C or HIV because of contaminated blood. It is right to wait for the Penrose inquiry. Let me make it clear that that is not an excuse, because I want us to take action. I am not sure whether that action will ever fully satisfy those who want this wrong to be righted, but as a wealthy and successful country we should be helping these people more. We will help them more, but we need Penrose first, and if I am standing here after the next election it will be done."
The APPG and supportive MPs are calling on their colleagues to commit to continue supporting the contaminated blood issue in the next parliament. A letter recently sent to MPs is available below.
In a recent letter to the Under Secretary for Public Health, Jane Ellison MP, the Haemophilia Society expressed a loss of confidence in the administration tasked with running the Macfarlane Trust. In light of this MPs are calling for an immediate inquiry into the organisations administering support to contaminated blood vicitims with particular focus on the Macfarlane Trust. A link to the statement made by MPs on this issue is available below.
On January 15th 2015 a debate was held in the House of Commons on which MPs from all parties spoke in support of dealing with the contaminated blood issues. Below is a link to a full transcript of that debate.
In Autumn of 2014 a survey was undertaken by the APPG on Contaminated Blood and Haemophilia which sought to establish the current state of support provided by the various organisations for those affected by contaminated blood. The survey was sent to all those affected by contaminated blood who could be identified. The responses and data gathered is presented in the full report below.
Following the YouGov survey, Alistair Burt MP wrote to the community with an update on the progress of the campaign, which included a brief, and preliminary, overview of the results of the survey.
As ever, the download is linked-to below.
On April 8th and 9th 2014 Alistair Burt MP and Diana Johnson MP chaired two meetings in the Houses of Parliament. The meetings were open to those affected by contaminated blood and those in attendence were briefed on what work had been done and on how ongoing work it is hoped would progress. Attendees where also invited to ask questions and comment on the many issues. Below is the follow up statement from Alistair Burt and MPs involved on what was discussed at the meetings and how things may progress.
The following are the minutes released from the meeting of the All Party Parliamentary Group on Haemophilia and Contaminated Blood, held on 5th November 2013. This meeting followed the Adjournment Debate held previously and was intented as a steeping stone to further action based upon the outcome of that, and prior to Alistair Burt MP attending a meeting, accompanied by his constituent, with the Prime Minister Daveid Cameron.
All Party Parliamentary Group on Haemophilia and Contaminated Blood
Meeting 5 November 2013 Portcullis House Room Q
Alistair Burt MP (AB)
Paul Goggins MP (PG)
Silvia Herman MP (SH)
Damian Hinds MP (DH)
Diana Johnson MP (DJ)
Jason McCartney MP (JM)
Jane Cox (Hepatitis C Trust)
Martin Lennon (Staff member Diana Johnson MP)
Bernard Manson (Chair Haemophilia Society)
Rachel Youngman (Interim CEO Haemophilia Society)
Staff member for Chloe Smith MP
Two other staff members (unfortunately unidentified)
The meeting congratulated PG on the adjournment debate. It was felt that this had gone well and that the Minister, Jane Ellison MP, had made a helpful and appropriate statement.
DJ explained that originally this meeting was to set policy for the APPG going forward. However, rather than dive into the detail of planning, it was decided to concentrate first on the forthcoming meeting on 12 November between the Prime Minister and AB and one of his constituents infected with HIV and Hepatitis C from contaminated blood.. This meeting had been agreed to by the Prime Minister in a reply at Prime Minister’s Question Time to a question pre-advised to his office. It was agreed that it made sense to have the outcome of this meeting before fixing the APPG’s immediate plans.
AB was seeing the Prime Minister with just his constituent and a friend of his constituent who was also co-infected. His constituent was articulate and felt strongly about the treatment of people affected by contaminated blood, but he was not a member of any campaign group. His particular point was that he wanted the Prime Minister to be aware of the situation at first hand. AB felt that by going as this small group he could choreograph the discussion better. If he took anyone else then a whole list of people would want to join.
PG commented that the campaign groups were very active, but there was a much greater number of affected people who did not belong to any group. MPs saw many of the unaffiliated people.
There was general agreement that while there were a large number of detailed issues to resolve, it was important to focus on the key points with the Prime Minister. These were agreed as:
The moral impact of the Prime Minister saying “sorry” appropriately as for Hillsborough or Bloody Sunday.
The need to have some process of open inquiry which would give assurance that all facts would be released and evaluated. This was not envisaged as being a public inquiry. Other models had been used satisfactorily – for example for Hillsborough. It was important that the Department of Health evidenced full cooperation in this.
Improved support for those impacted. This should be linked to need and distributed with dignity.
Holding some form of consultation with those affected to attempt to build a consensus on an agreement. We are able to identify the beneficiaries of the Skipton, MacFarlane and Eileen trusts but there may be a more individuals yet to come forward. While it was recognised that some people would not accept anything less than “an unreasonably large sum for everyone”, the general feeling was that if it were possible to go through a sensible process of consultation it should be possible to get a reasonable package agreed with a large majority. The Haemophilia Society was recognised as key body for communicating with those affected. AB recommended Nadhim Zahawi MP as someone who could assist with the consultation.
It was agreed that AB should also raise the issue of Penrose, both from the view that this addressed pre-devolution matters which the UK government should respond to (as accepted by Jane Ellison MP) and from the view that if there were not a positive engagement by the UK government it could become an issue in the independence referendum.
The staff member for Chloe Smith MP commented that one of Chloe’s constituents was infected with Hepatitis C and now had serious liver disease. She had contacted her MP to ask that she be treated as an individual and not as a statistic. An opportunity to respond one-to-one to a sensitive questionnaire would be a start.
There was a discussion on whether the Government would accept responsibility for the infections with contaminated blood. AB’s formulation was that there was a difference between accountability and liability; the Government was accountable. SH pointed out that the Irish Government had reached a settlement with its infected community without accepting liability. She believed that this was a workable model for the UK and we should investigate it – she recommended Mark Durkan MP as a source of information.
There was a brief discussion about the non-Haemophiliacs infected with whole blood products. JC said that the number was around 2,000. It was a reminder that one problem had always been the different priorities of different groups of those infected; that was why it was important to have a mechanism for broad consultation and a process to pull together an agreement.
The APPG had booked to hold its AGM on 20 November at 11am in room W3. This meeting would now also be used to get feedback from AB on his meeting with the Prime Minister and to plan the APPG’s forthcoming activities accordingly.
ACTION BM would draft a two-page briefing note for AB for his meeting. Following a discussion between ML, DJ, and JM, it was agreed that this should include the suggestion that the £230m sales proceeds from PRUK should be used for increased support for those infected.
ACTION BM also would try to check if anyone from the UK Department of Health had appeared before Penrose. (Post meeting note: a review of the list of witnesses given on the Penrose website does not include anyone from the UK DH.)
Next meeting on 20 November at 11am in room W3
In October 2013 an adjournment debate was held in Parliament to discuss the many ongoing issues still facing the contaminated blood community. Below is a video of the debate and a link to a full transcript.
The Birchgrove Group website is maintained and updated by a small group of HIV positive haemophiliacs for the sole purpose of providing information and news which is relevant to others in the same position.
Any communication with the Group will be treated in the strictest confidence and any information provided kept in accordance with the UK Data Protection Act.