I've been slightly taken aback at receiving quite a few angry emails over the past few days about Friday's Private Members Bill sitting, at which I was the whip on bench duty. We got through a fair bit of business, with all stages of Anthony Steen's Anti-Slavery Day Bill and Andrew Dismore's pleural plaques bill, which he's tried to get through the Commons before and this time was successful, with Government support. As the session drew to an end at 2.30pm we had just started on another Andrew Dismore bill, but there obviously wasn't time to debate it and it will be relisted for hearing on another date. It's then the job of the whip on bench duty to tell the Speaker what the Government's position is on the remaining Bills listed for hearing. The fifth Bill on the list was the Contaminated Blood Bill, which does not have Government support. My job therefore was to shout 'Object' as the title of the Bill was read out. That was the extent of my involvement; the actual decision was nothing to do with me, and if I hadn't shouted 'Object' the Deputy Chief Whip would have done so, or the Minister. But obviously the people who are directly affected by this issue are upset, and have contacted me to tell me so. This is partly because they have - mistakenly I believe - pinned all their hopes on this Bill getting through the parliamentary process which, quite frankly, was not going to happen, especially not given how close we are to the end of this parliament. Anyway, here's a letter I've sent out in reply to a constituent, in a bid to explain, and I've also written in similar terms to everyone else who has contacted me. I've had some nice responses back from people, who at least appreciate the fact I've responded, even if they don't agree with me or the Government. Here's the letter:
"Thank you for your emails regarding the Contaminated Blood Bill. I completely understand why this is so important to many people and why you find it frustrating that the Bill did not receive a Second Reading on Friday. The Bill, however, was not reached during Friday's sitting, as it was fifth Bill listed for debate on the order paper and the House had only just started debating the fourth Bill when we reached 2.30pm. As we ran out of time, there was no opportunity for a debate on the many measures in the Bill.
The Government's view was that it was not appropriate for the Bill to go through without a proper debate in the Commons, i.e. the objection was to it going through 'on the nod', rather than to the Bill itself. I was the duty whip on Friday, so it was my responsibility to announce the Government's decision. Understandably, I have received a number of emails from people across the country, and from TaintedBlood, about my role in this and I have responded to them all to clarify the situation and explain it was not my personal objection. As you are a constituent with whom I have previously discussed these issues, I appreciate that you may be concerned more than most, so I will be happy to meet with you again to discuss this in more detail.
I certainly do not underestimate the understandably strong feeling within the haemophiliac community about Lord Archer’s Report and Lord Morris’s Bill, particularly following my meeting with you, discussions with other constituents, and through my membership of the All Party Parliamentary Group on Haemophilia. Indeed, you will know that I have previously written to Ministers on a number of occasions in support of your objectives. I should make clear, therefore, that I am personally supportive of some of the measures in the Bill, although I have reservations about some elements. For example, while I appreciate why campaigners are calling for free prescriptions for haemophiliacs, I do not think this issue should be decided on an individual basis when there are so many other groups calling for similar action on behalf of those with chronic conditions. The Government, as you may know, set up the Gilmore review to look at whether the right to free prescriptions should be extended, and is currently considering its recommendations.
The Bill will be relisted for a Second Reading on 26th February. It is not, however, likely to be high up the order paper as the order is determined by where members came in the ballot for Private Members Bills, and the mover of the Bill, Mr Eddie O'Hara was not drawn in the ballot. As we are so close to the end of this parliamentary session it is very unlikely that more than a handful of Private Members Bills will make it through the legislative process and priority will be given to those bills which did top the ballot.
I have spoken today with Dr Brian Iddon MP, who has been very supportive of the haemophiliac community. He told me he advised campaigners before the Bill was introduced to the House of Commons that it would unfortunately be very difficult to secure sufficient Parliamentary time for it to be fully debated and passed, and that it would be objected to on behalf of the Government by a whip at Friday's sitting.
Dr Iddon actually secured first place in the Private Members Bill ballot, and considered taking up the Contaminated Blood Bill, but came to the conclusion that there was no chance of it being approved by Parliament before the end of this session. Dr Iddon takes the view, as do I, that the way forward is to continue to make the case to the Department of Health on some of the specific recommendations of the Archer review, rather than seek to push through legislation which does not have Government support.
I realise you will be disappointed with this response, but I hope it is helpful in explaining to you what happened on Friday. I know that your health sadly meant that you were not able to come to our last meeting, but if you would like to meet again to discuss this, and explain which specific measures you believe should be a priority, please do contact my office to arrange a time. I can assure you that I will, in any event, continue to lobby the Department of Health on your behalf."
34 comments:
Kerry, as Secretary of TaintedBlood, the group that campaigns and advocates on behalf of all those who are infected and affected by contaminated blood and blood products, could I first of all say that we are all further angered by the fact that you decided to write one e-mail and send it to all of us, regardless of our circumstances. I think that when sick, dying and disabled people take the trouble to contact you, the very least you can afford them is a personal response! Secondly, I am appalled that you say you were: '...slightly taken aback...' by our letters. What did you expect? If, as you say, you have supported us in the past, then you should know how hard we have fought to get where we are today, and how much this Bill means to us. Moreover, I noted with interest that you say in your letter that you are a member of the APPG on haemophilia. Really? In that case you really shouldn't need to be reminded by me of the remit of this group, nor that its President is the Rt Honourable Lord Morris of Manchester, who actually wrote the Contaminated Blood bill! Our community is in despair and it needs people who will defend what they know to be right, not simply follow the party line without question. It is not too late to rectify this - you indicate that you want a debate? So do we! I therefore request that you do everything within your power to help us get one! Let your conscience be your guide; not the Chief Whip.
Sue Threakall
suethreakall@hotmail.co.uk
I think your response Sue is very unfair. Perhaps you don't realise that virtually every other MP in this place would have ignored all those emails, unless they came from constituents? That is the usual practice. And I can't think of a single other MP who would have blogged about it too. I devoted a significant part of my day to this issue, reading emails, speaking to other MPs, composing my response, despite having 101 other things to do. Having been on a Bill Committee for the past three weeks, today was my first opportunity to catch up on a big backlog of work; instead I chose to respond to people on this issue and I am sorry that you do not appreciate my efforts. (I have to say, I have received some nice responses from people who ARE pleased that I took the time to contact them).
My role in this was absolutely peripheral. I understand that you are looking for a scapegoat, but these decisions are made by the Dept of Health, not me. I understand that Eddie O'Hara, whose Bill it was, has made this clear to the Haemophiliac Society too, as he spoke to me in the division lobby earlier today and said he was sorry that campaigners were, wrongly, targeting me on this, as did Brian Iddon. To be honest, I think the approach you are taking makes it less likely that MPs will want to support your cause, and that's a great shame.
Kerry,
Come on, don't take this personally. It's what you signed up for! These people are dying. You really shouldn't be surprised that they are desperate and therefore capable of letting their emotions get ahead of themselves. Your reply to Sue suggests indigence that people are angry. Wouldn't you be?! You should account for that!
Phillip Carter
As I said, my sympathies are with them, and the Government has already done a lot to help. But this Bill was never going to become law.
Hi Kerry,
Was it not the Conservatives that infected all these people? I know people who were infected, and they get no tangible support at all, some who have AIDS get 12k a year, but those with Hep C get a one off payment - and then they die.
Those left behind get nothing - or am I wrong?
Is our blood safe now?
Peter Sutton
Alpine Road
Bristol
BS5 6BD
Kerry
with respect, sympathy is not invited. It has no use for those infected and affected who as a result, have lost the opportunity to work, and provide protection and security for themselves and their families.
You say the Government "has already done a lot to help" obviously not enough, as sick and bereaved people live on the breadline and lose their homes.
The haemophilia community are weary of false promises and if the view is this Bill will never become law then it should have been stated so right at the start.
I have included a letter sent to media FYI hope it helps with your understanding on why there is so much anger out there concerning the APPG action where were they from 2007 onwards while Lord Archer was sitting and asking for witnesses?
I like many others of the haemophilia community watched with utter shock as a government whip objected to the bill going through to the next stage of becoming law. This callous economical objection was a bitter pill to swallow from the junior whip, (Ms Kerry McCarthy MP), who I guess, had been instructed by the Treasury. I can only assume she is ignorant of the fact that the Treasury were one of the main reasons why back in May 1976 Dr David Owen’s pledge to make the UK Self Sufficient in blood products was never carried out. This forced the continued use of commercial blood products, and also caused thousands of people with haemophilia to become infected with Hepatitis C and HIV.
This shameful Government action is yet another example of the arrogant contempt they have shown to Lord Morris and Lord Archer since the inquiry started. It also came on the same day as our PM Gordon Brown spoke publicly in the Evening Standard about the death of his premature baby daughter, saying “you are never the same again” particularly if that someone as in our case, was a child. He went on to say that moving on with their lives became easier when they realised, “there was nothing that could be done”.
This sadly has not been possible for many mums and dads who lost children in the contaminated blood disaster as they still know that the death of their loved one was totally avoidable. One such mum who lost her son aged 7 still waits and grieves after nearly 20 for an independent official explanation, It’s a sad fact that past and present Governments haven’t understood their responsibility to provide us with one. The current Government will not even consider debating this issue in the House of Commons, I wonder what they have to fear from the truth? They proudly state how much they have provided, like a man walking down the street wearing a poppy after only putting a penny in the tin.
In 1987 Robert Key MP announced in the Guardian on the 17th November, that he and “cross party” members had attained a “victory” for the Haemophilia Society’s campaign to provide financial help for the infected people with haemophilia, they had managed to obtain the first of the ex-gratia payments from the government, top on the agenda of the “cross party” group was that money would help with providing “life insurance cover for dependants, mortgage protection for their homes”, well I think the members of Robert Key MP’s “cross party” group, need to be up-dated as 23 years later I’m now facing death from liver cancer caused by hepatitis C and I still have no life insurance or mortgage protection, to provide some security for my wife and dependants.
I am ever hopeful, that the PM will agree to meet me one day very soon.
HL
Dear Kerry,
I understand that as a Government whip there are limits to what you can do when told to follow a line.
However the general 'there was no time to debate this' excuse is difficult for many to understand, when for large parts of the working day the Chamber is empty when it could be used to debate such issues.
As a specific example, Mark D'Arcy at the BCC made the point last Thursday that the Chamber was empty and business closed by 2:30pm, when the Chamber could have debated until 6pm.
(see here for details: http://www.bbc.co.uk/blogs/markdarcy/2010/02/where_are_all_the_mps.html)
I imagine that there is a clear procedural reason for this, but please don't be surprised if people in life and death situations are unwilling to accept procedural excuses.
Kerry, First of all, thank you for replying to my message on your blog. I’m sorry you think my initial response to you was unfair, because I am trying hard to be very fair on this issue. I – along with everyone else involved – understand perfectly that the objection came not from you but from Government. You were/are merely a pawn in the whole sorry proceedings. The point that maybe I should have made was that as a human being, a woman, who obviously already had an interest in this issue, I cannot for the life of me understand why you didn’t stand up for what you know deep down to be right and let someone else do the job on the day! It’s all very well saying that it should be debated, but maybe you could enlighten us all as to how that could happen when Government won’t let us have one?
Please don’t patronise me about the ‘usual’ practises of an MP! I have been campaigning now since 1983 and for the last few years have been spending many hours most days on it. I know for a fact that many of our campaigners have received lovely supportive letters and e-mails on it from MPs other than their own, and in fact only a couple of days ago an MP signed Eddie O’Hara’s EDM (538) after being contacted by someone who is not a constituent.
You’re right; you don’t have to do this blog, and believe it or not I am pleased that we have some kind of dialogue going with you – even though I assume we are not your favourite people at the moment! It’s nice that Eddie O’Hara has supported you because at the end of the day if you’re brave enough to stick your head above the parapet you risk getting shot down – and then you need your colleagues.
Going back to the comment you made about me being unfair, could I just add this: I think it was unfair that my lovely, kind, honest, funny, trusting husband was persuaded by his NHS doctors to use treatment that ultimately killed him. I think it was unfair that he died doubly incontinent, confused, frightened and unable to swallow or breathe properly. I think it was unfair that his mum had to watch her only son die horribly at the hands of the NHS after she had devoted her life to keeping him safe. I think it was unfair that she died soon after when her life became meaningless. I think it’s pretty unfair that two of Bob’s children have led compromised lives as a result and the third has cut himself off from us all. I think it’s pretty unfair that today I have less than £2 in my purse and we’ve run out of milk – but hey, whoever promised us a fair life?
Come on, Kerry! We know what it’s like to be treated harshly, and you can do one of two things: You can either moan about how cruel it all is or get up deal with it! Why not help us out? You know the system better than most of us; you apparently care about our cause – you see the need for a debate! Please help us get one!
Sue Threakall
Peter from Bristol (BS5) asked if the blood supply is safe now, I wish I could say it was. I do not believe that the 2.5 million donations in the UK each year are safe. We currently have to import white cells and plasma from the USA, from a commercial company which supplies the UK with white cells; such a company in could easily fall foul to the use of paid plasma donors from the US/Mexican border, where impoverished people have been known to cross over from Mexico to the US in order to sell their blood. The NHS has been using US-sourced plasma since 1998 as part of its vCJD risk-reduction strategy. From October 1999, the white blood cell content (which carries the vCJD risk) has been reduced in all UK-source blood used for transfusion – this is done by a process known as leucodepletion (taking out the white cell content). Fresh frozen plasma, for treating children up to the age of 16, is obtained from the USA. Adults in Britain have to have UK-sourced fresh frozen plasma! It’s just tough luck! Back in October 2009, a Government scientific Committee recommended the use of filters for blood transfusion – to filter red cells, but only for children under 13 years, at least initially. We are currently waiting for Government to put this into practice.
Most countries in the world wouldn't touch British blood! If you ever had to have a blood transfusion in the UK, (using British-sourced blood), then you would not be allowed to donate thereafter. The UK authorities are quite happy to give suspect UK blood to you - but they would NEVER let you give it back! It is obvious to me that it can only be said that the UK blood supply is “safe” for those under 13 years of age, which is a good thing, but it is simply not enough. If the general blood supply were also safe, then British citizens wishing to live abroad would be permitted to donate blood in their new country of choice and the United States' FDA would not have had to ban blood donations from anyone who had spent more than 6 months in Britain between 1980 to 1997 because of the risk of vCJD.
The Contaminated Blood Bill affects the whole country, not just haemophiliacs. If the Bill were to become law, the blood supply would finally be made SAFE through the implementation of prion filters and filtration of blood. All blood donors would be routinely tested for the following conditions: HTLV (human T-lymphotropic virus), syphilis, and vCJD (mad cow disease) in addition to those conditions already screened for. This is why the Bill is so important and why it needs to become statute.
Sue, I am not in a position to call for a debate on this issue. Backbenchers can do this by putting in for an adjournment debate or by raising it at Business Questions on a Thursday. I can't, I don't have speaking rights. I can and have written to Ministers on this, but if you are looking for MPs to champion this cause on the floor of the House, I cannot do that.
Dear Ms Kerry McCarthy you seem to have miss-led the haemophilia community in your response letter as it is clear from the APPG on Haemophilia list of members that you are NOT registered. How can we believe any explanation you give us?
Kerry you have said that the government are not backing this contaminated blood bill.
I assume that as you are the one who placed the objection you will be able to answer this.
What part of the bill has caused the government to object. Is it purely a financial based decision.
What is your opinion on the way forward for this bill.
Harry
I joined the APPG in April 2008. If you are referring to the published register of APPGS, they only show the first 10 members from each political party.
Harry, I am sorry but I was not involved at all in the decision-making on this. As I've tried to explained, the whip's role is simply to convey a message. Whilst I may sometimes be involved in discussions on Bills for which I have departmental responsibility (Children, School + Families; International Development; Northern Ireland) I would not have any involvement in discussions on how Health-related Bills proceed through the House. I have had responses from Ministers to previous correspondence on this issue, but that was as a constituency MP and I cannot act as spokesperson for the Government on this. To find out more I would suggest you contact Eddie O'Hara, the sponsor of the Bill, or a Health Minister (either Gillian Merron or Andy Burnham) via your own MP.
Further to last comment, I've dug out this email exchange:
From: FEATHERSTONE, Lynne
Sent: 02 May 2008 14:24
To: MCCARTHY, Kerry
Subject: FW: APPG Haemophilia
Dear Kerry
Apology for the delay in getting back to you about this. That's great. I will forward your email to the Chair of the group to take forward.
Best
Lynne
--------------------------------------------------------------------------------
From: MCCARTHY, Kerry
Sent: 09 April 2008 12:27
To: FEATHERSTONE, Lynne
Subject: APPG Haemophilia
Dear Lynne,
I would like to join the All-Party Parliamentary Group on Haemophilia. Having recently received a number of letters from constituents on this issue and the contaminated blood inquiry, I am interested in promoting an awareness of those with haemophilia.
Regards,
Kerry
Dear Kerry
The bill from Lord Morris is seriously flawed and demonstrates little or no knowledge of the systems already in place concerning the safety of blood products. It is in the interests of all recipients of blood products that proposals such as these do not proceed without full and proper consideration.
Do not be intimidated by those who for personal reasons want this bill to proceed without debate.
Hi Pete, based on your comments you seem to have an indepth knowledge of this bill. Therefore would you like to share with us the serious flaws in Lord Morris`s findings. Also explain why it demonstrates little or no knowledge of the systems in place.
Your suggestion of intimidation is crass at its very lowest form. The VICTIMS are trying to survive and its detached comments like yours that makes it harder to do so. Also there is a hint of a "friend of Kerry McCarthy" in your tone.
Hi Pete, based on your comments you seem to have an indepth knowledge of this bill. Therefore would you like to share with us the serious flaws in Lord Morris`s findings. Also explain why it demonstrates little or no knowledge of the systems in place.
Your suggestion of intimidation is crass at its very lowest form. The VICTIMS are trying to survive and its detached comments like yours that makes it harder to do so. Also there is a hint of a "friend of Kerry McCarthy" in your tone.
Pete the UK blood supply is not safe full stop. We import all blood products including plasma except for red cells and platelets. Even the Red cells are not safe and carry the risk of transmitting NvCJD. In October last year. The government was advised to use Prion filters on blood transfused in to all children under the age of 13yrs. The bill has provision to make the supply safe against known and all future pathogens as soon as they are identified.
So, who is right; Wander of London - or Pete? One provides apparent facts, the other just 'comment'.
Pete can you tell us how you know blood is safe? Blood that we are forced to buy from dodgy sources, how is it safe, beyond reasonable doubt?
Put up or shut, with respect.
Peter from Bristol (BS5)
Kerry,
Thanks for taking the time to blog about this. I'm sure you understood the time implications and the two-way nature of Web 2.0 when you decided to venture into it. Hopefully this won't be too big a drain on your time.
Last Wednesday hundreds of terminally ill people and their families came to London from all over the country. They came in the hope that the government would finally listen to them, and not brush their needs aside as it has done so many times before. Time is very precious to many of these people, as I'm sure you can appreciate.
People are tired of hearing that it's not your problem, it's not Labour's problem. An independent enquiry found that it is the government's problem, and that more needs to be done to support the victims.
I hope that reading some of the personal stories here has at least given you an insight into why this is such a painfully emotive issue, and why each time a resolution is delayed, the person responsible is entitled to answer for it. Whether they are 'just doing their job' or not.
Hi- Harry/Mcleod/Peter
I think Lord Morris will accept that he knows nothing anout the technical procedures listed in his bill. I can't imagine that blood can be made safer by non-experts dictating what should be done. When you are ill, do you go to a doctor or to some-one who is not medically qualified?
If you want to know more about the systems already in place you can check out the following websites:
transfusionguidelines.org.uk
mhra.gov.uk/howweregulate/Blood
europa.eu and go to CHMP
dh.gov.uk/ab/sabto
Surely the purpose of the 'name and shame' campaign is to scare MPs into giving support. I call that intimidation.
and no I don't agree with buying blood - but that's not in this bill.
We are already fully aware of the systems already in place, and it just isnt good enough. Blood can be made safer. Why do you feel that it is so safe.?? Obviously you need to educate yourself a little further on the matter. Maybe you should read the Archer report , I am sure we could let you have a copy and then you can decide whether or not you still feel the same. I find your comments insulting. I am HIV positive , have HEP C and possibly CJD through infected blood products through NHS treatment. Really safe isnt it.
Kerry, I'd like to thank you for letting us keep this topic going, and also for the comments you made about securing a debate in the House of Commons. We have nothing to hide. We have thirty years of evidence and witness statements, plus any amount of people who know this subject inside out and would be willing to support what we say. I would like to draw everyone's attention to our own website, www.taintedblood.info, where - among other items that may be of interest - you will find (under the evidence section) a document we produced to coincide with the opening of Lord Archer's inquiry. It took weeks of hard work, is over seventy pages long, is fully referenced and backed up with evidence and was sent to political leaders and church leaders worldwide. The Government’s official response to it, weeks later was to say: ‘Thank you for your Information Booklet’ Is it any wonder we get angry? Look at some of the things we actually accused successive Governments of:
Chapter I
I. Gross Maladministration
I b. Underfunding of the Lister Institute
I c. Neglect of BPL Elstree
Chapter II
II. Conducting Unethical Research
II b. Conducting Unethical Infectivity Trials
II c. Spiking of Factor VIII with Pathogens
II d. Research Dictating Clinical Need
Chapter III
III. Aiming Infectivity Trials at Children
III b. Cirrhosis in Children
III c. Rules of 'Life-support Therapy'
III d. Haemophiliacs Used Instead of Chimpanzees
Chapter IV
IV. Ignoring Warnings
IV b. Failing to take Adequate Measures
Chapter V
V. Failing to Learn Lessons
V b. Variant Creutzfeld-Jakob Disease: Lancet 1996
Chapter VI
VI. Procrastination over Wider HIV Tests
VI b. Procrastination over Intellectual Property
VI c. Deliberately Withholding Test Results
Chapter VII
VII. Knowingly Withholding HCV Test Results
VII b. A 'Prima Facie' Case
Chapter VIII
VIII. Attempting to Vanish Crucial Evidence
VIII b. Missing or Destroyed Signed Waivers
VIII c. Recovery of Missing 600 Documents
VIII d. Deliberate Obfuscation: Self-sufficiency
This is followed by eight chapters of supporting evidence!
So, I would suggest to Pete that although we don’t have any formal qualifications in the area of blood safety, we do know our stuff, based on years of research and actually living with the consequences when things go wrong. We have proved conclusively time and time again, year in, year out, what went wrong, and why. Can’t you see why we are getting a tad annoyed? The ‘Name & Shame’ campaign was instigated by Lord Morris and the Haemophilia Society, though we are more than happy to support them. Its purpose is not to intimidate – intimidate an MP? Get real! – but to expose to the public those MPs who are refusing to support their constituents – which is, after all, the job they are getting paid very well to do, and without whom they would be out of work.
It doesn’t have to be like this. I found out earlier today that while the latest battle has been ongoing another death has occurred. Another family mourning. Another man dead without even the peace of mind he would have had from knowing that financially at least, those he left behind would be ok. There have been too many deaths, too much hurt – and all of it was, in my opinion, as I said on the opening day of the Independent Inquiry, wholly avoidable. The very least the Government can do is to acknowledge what happened, deal properly with it once and for all, and let us all move on. Some of my fellow campaigners have such little precious time left that it seems like the worst cruelty to watch while they travel – again – to London to seek support and maybe a bit of hope. However, I should make it clear that if we don’t win through, where when we are no longer there the campaign will go on. Our children and our friends are there, ready to take up the reins.
Hi Rusty
I guess you comments are aimed at me.
I did not say blood was safe, nor that it could not be made safer. What I was trying to say - perhaps not very well - is that complex technical/ medical judgements that could effect everyone in Britain should be made by the best experts available not by unqualified people, however well intentioned they may be.
I am sure you know that blood was made safe from HIV and hepatitis C a very long time ago - I appreciate that is no consolation to you - and thanks for the offer, but I have read the report from Lord Archer - who as far as I can judge blamed a failure to achieve self-sufficency. I don't think he accepted any other points from the "Acusations" document - please correct me if I am wrong.
My personal opinion (if I am allowed to have one) is that risks from vCJD have been greatly exaggerated, mainly by people with a vested interest in the 'prion industry'. Despite this, I do happen to support prion testing and prion filtration of blood (in case I am wrong), but only when independent experts (not the companies concerned) judge that the proposed techniques are suitable.
Pete,
one of the defences that the Government have always used is that they ( or any other previous administration) have never been found at fault. If you read Lord Archer's report it does not set out to attribute blame ( last sentence on page 9), so saying that Lord Archer blamed the lack of self sufficiency is not entirely accurate.
Also, can I ask you who you think came up with the recommendations. Do you think that Lord Archer made these up himself ? Take a look at the witnesses who gave evidence. Take a look at the transcripts of the proceedings. You will see the experts that Lord Archer consulted.
I can understand your comment regarding the risks of vCJD. I will however put another point to you - my daughter has had blood product once in her life when she was 6. We have been contacted to let us know that one of the donors of that blood had vCJD. Can you possibly understand what it is like to sit there and look her in the eye and tell her this. She is now 19 and should be looking forward to the rest of her life, not living with the fear of this terrible disease hanging over her.
So what if you believe the risk is over exaggerated - isn't it better to play it safe than put anyone else through the mind destroying process of being contaminated with this and other horrible, horrible diseases. If the Government got behind this issue in the same way that they did for swine flu, we would all be in a much better position.
Just so you know, the same number of haemophiliacs have died as a result of the contaminated blood disaster as double the combined total of the Piper Alpha disaster, The Herald of Free Enterprise disaster, The Marshioness disaster, the Hillsborough disaster, the Heysel disaster, the London 7/7 bombing, the Ladbroke Grove train crash, an the Locherbie Pan Am Flight 103 bombing. I repeat, double the combined total. Please don’t tell us that the risks of unsafe blood are over exaggerated.
One final point, I would have thought that any investment in NHSBT that would undoubtedly follow any increased spending on blood processing would have been welcomed in the Bristol area.
My dad is unemployed, he is not a scrounger, he is not work shy as this government would have the public believe about all those who are unemployed.
My dad is dying from a blood born virus that was given to him by a Government department The NHS, and by doctors working in this department.
My granddad fought and died for this country,
This country is not a country I feel is worth fighting for.
Why should anyone fight for a country that has a government capable of treating human beings in the way this government has treated my dad
The people who are now in charge seem to have no problem sending solders out to meet their deaths without a second thought.
My dad tell me to leave this country as their is nothing here for the young, unless you come from a rich and famous background.
NHS treatment is killing my dad while those in power sit back, watch and do nothing to ease the burden he bares every day.
I love my dad very much and it has become painful and upsetting for me and my sister to watch as my dad fights the onset of these infections, knowing in is mind that time is fast running out for him and he is unable to leave his family any kind of financial security for our future without him.
Last week victims of this disaster could have been given the support they needed, but one MP Kerry McCarthy, Bristol East objected to a bill that would have seen an end to this torture and suffering, Ms McCarthy tells us she was instructed to take this action.
I say is Ms McCarthy unable to take what she feel is the right action without being ordered to? Did she tow the party line to further her own career in politics, could she not refuse to object to whomever instructed he to?
This action, for whatever reason condemned people like my dad to a continued life of illness, torture, worry, and probably death.
Thanks for caring Gordon.
Pete you don't have much of a clue about NvCJD. 4000 haemophiliacs have been informed that they are "in an at risk" group and run a theoretical risk of developing the condition, most of these already have HEP C and all that have HIV are in the group.
Now you probably think that's it, we are at risk but being on that list has severe consequence. For example ever time we have a invasive or surgical procedure. this includes being examined by a dentist, all apertratus, implements, tool and surgical instruments have to be destroyed or saved so that they are used on one person. This leads to problems for example finding a dentist, who is prepared to buy equipment for one patient and then store them! Tell me how many NHS dentist do you think are prepared to do this? I for example have my own endoscope as I need to have regular endoscopies because of portal vein hypertension caused by HEP C. I had 1 a year but for 3 years I didn't have one because funding for my scope had to be obtained. Every procedure i need has to applied for, for extra funding. I recently decided not to have a procedure carried out, funding was granted but the cost was £30 000 over and above the normal costs. My medical records are clearly marked so that my status is clear to any hospital worker as soon as they see them, not as bad as in the past of course when HIV+ was written all over my notes in 2" letters twice on each side.
Pete as for your belief that about Prion filtration, the governments own advisor have recommended there use when children under 13yrs require a blood transfusion. You would have been informed about this and many other errors last night but by comment was blocked.
Hi Sue
I think there were some comments for me in your latest blog.
You say that you have proven conclusively what went wrong and why. I am not so sure.
Lord Archer blamed failure to achieve self-sufficency, but he did not say why this failed or who was responsible or what should have been done. Lord Owen blamed his civil servants.
In May 1975 the WHO issued guidance on self-sufficency (WHA28.72)which urged its member states to "enact effective legislation - to protect and promote the health of --- recipients of blood products".
The Department of Health says it "strongly supported" this resolution. If so, why was "effective legislation" not put in place? Who was responsible? Was it the Minister of Health (Dr Owen)? Or were his governemt colleagues responsible - such as the minister for the disabled (A Morris) or perhaps the Attorney General (P Archer)? Why did Lord Archer not pursue these questions?
Then there was the role played by the 'name & shame' Haemophilia Society, to whom their president (Lord Morris)now wants to give statutory authority. What did they do to promote self-sufficiency? Did they urge the government to "enact effective legislation". I don't know. I do know that they urged the government to import factor 8 and when health professionals expressed concern over AIDS, it was the haemophilia society who advised the government to continue to import factor 8 from America - advice which the government sadly followed. None of this was mentioned by Lord Archer or disclosed by the haemophilia society in their evidence to his inquiry.
I think you have further to go to get to the truth which, as Nelson Mandela has shown, can help with reconcilliation.
Peter, regarding self-sufficiency, the best way I can explain it is to say that following several inspections it was widely acknowledged that facilities for blood production in Britain were inadequate and underfunded. Furthermore it was accepted that self sufficiency in blood products instead of importing commercial products would mean that there would be far less risk of infection. In 1974 Dr David Owen announced to the House of Commons that several million pounds had been allocated for this purpose, but in the event this money was diverted to other purposes and we never achieved self-sufficiency. Following this, Dr David Owen was moved to the Foreign Office so he no longer had any influence and lost touch. Even today we import from the United States, a country that still uses paid donors. People do not generally sell their blood for altruistic reasons; they do so because they need the money for things like drugs and drink. Such blood is historically well known to be high risk. We import certain blood components today because of the risk of vCJD from our own blood – yet the U.S. has had cases of vCJD and CJD too, albeit at a lower level than in the UK. You ask why ‘effective legislation’ was not put in place? Quite simply it was because the government of the time had priorities that they thought were more important than the safety of the nation’s blood supply – a bit like today, really!
However, regardless of any efforts made to bring in or to hinder self-sufficiency, the whole thing was fundamentally flawed, since the system – even with proposed changes – could ever have brought the UK system to maximum capacity. In order to achieve genuine self-sufficiency we would have needed to introduce and properly fund plasmapheresis.
Regarding the Haemophilia Society, to an extent you are right, in that they promoted the use of blood products and they could maybe have done more to promote self sufficiency, but you have to remember that they were acting on the advice of the medical profession and the Government , and also that today they are 100% behind us. Yes, I believe they were wrong not to question what was happening but how could any of us really have known to what extent money was being put before human life? To the best of my knowledge and understanding, the Haemophilia Society did not advise the Government, it was the other way round! The Government had representatives who at the time sat in on meetings of the HCDO.
Regarding the Lords Morris and Archer, I resent the implications that their actions or lack of actions were in some way responsible for what happened. Much of Lord Morris’s career has been devoted to working for the disabled and without him this country would be a poorer place. His track record speaks for itself. As for Lord Archer, he was never Attorney General – although he was at one time Solicitor-General. Regardless of this, we could name many others who were in positions of authority at the time – and in far closer proximity – who we would regard as being far more culpable.
Hope this explains a bit more about where we are coming from.
By the way; I heard yesterday that, as predicted, while all this has been going on, we have lost another one of our community as a result of contaminated NHS blood supplies.
Hi Mcleod
I am sorry to hear of your problems.
The decision to inform 4000 haemophiliacs that they were at risk from vCJD was an 'ultracautious' decision made by doctors who were wrong about HIV and wrong about hep C and who did not want to be accused of being wrong again.
I think it was a bad decision, for precisely the effect it has had on you and everyone like you.
If you read my comments carefully you will see I do support prion testing and prion filtration of blood when it is judged suitable by independent experts - this is not staightforward as it would be easy to get it wrong and do more harm than good.
Hi Sue
The money that Lord Owen said was diverted to other purposes was actually spent on obtaining more plasma - something which you are right to point out was just as important. Despite what Lord Owen has said, money was given to the production facilities and all of their targets were met. The problem was that the targets were wrong and the money provided was therefore grossly inadaquate. It was a case of gross mismanagement by a government which did include Lords Morris and Archer amongst its senior members - though I take youre point that they were probably not individually responsible.
Finally, if you check the minutes of HCDO meetings you will see that the haemophilia society was represented as well as government and was a party to the decisions taken.
PETE Said
I do support prion testing and prion filtration of blood when it is judged suitable by independent experts - this is not staightforward as it would be easy to get it wrong and do more harm than good.
Yes it will be at least 2yrs but probably 3+ before filtration is introduced!!!
It took about the same amount of time to start heat treating Factor 8 and 9! And what a complete disaster that was, for many the gate was shut after the horse had bolted.
Look. At the end of the day we can argue for the next five years about detail - by which time many of those affected will be dead. To put things simply, a small group of disabled people trusted the NHS to when it changed their treatment from Cryoprecipitate to Factor Vlll. Their trust was misplaced because - for whatever reason - human error, medical experimentation, etc - it all went horribly wrong and these individuals whose health was already compromised were given not just one more life-threatening problem but usually another two or three. many of them died, many of them are dying as I write this. We have lost sons, fathers, brothers and friends and at the end of the day I don't think it's too much to ask that the Government accepts moral responsibility to these people. Who did what, why and when may not be so easy to prove - the result of what they did speaks for itself.
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