I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.
I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care. I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it. I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure.
I am really sorry to say that upon listening to your announcement I was bitterly disappointed. Not only did it not offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise. We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.
The results of the review and the ensuing support you have proposed will not offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.
Some points based on my own experience may help you to understand why I make the statement above. I have a severe bleeding disorder, von Willebrand’s disease. I received blood products from the NHS from the age of six months old. I have been infected with Hepatitis C and exposed to vCJD. In terms of what your announcement will provide me:
- · Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?
- · Free counselling – I recently underwent counselling from my GPs. I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions. We had barely stroked the surface. I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support. You are providing 6000 hours counselling over the next three years. This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers. I do not consider this to be a comprehensive solution. Why impose such a limit?
- · Access to a discretionary fund – I have had two courses of treatment for Hepatitis C. Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards. Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C. I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved. However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain. The idea that for any financial need I have to come begging to get even a modicum of help is not good enough. Will this fund replace my lost earnings? Will it compensate for not being able to get a mortgage or being unable to get sickness insurances? Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore? Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home? I would like to know the remit for this discretionary funding as soon as possible.
What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum. This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products. However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.
I would like to also point out a number of other inadequacies that your new scheme will put in place.
- · You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing. This is long overdue. In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments. Why is it necessary to have a cut off date at all? Surely if someone is eligible it doesn’t matter when they apply? Or is this an attempt to limit the number of applications and therefore the cost? You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application. By the end of March 2011 this will be nigh on impossible.
- · You are providing support to those who meet stage 2 of the Skipton Fund criteria. This immediately divides the infected community to those infected and suffering, and those dying. Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy. I presume those annual payments cease once the person dies?
- · When HIV support was announced, whilst it was a flawed scheme, it at least paid out to all those infected, a decision you have chosen not to take for HCV infected. I know when those payments were made, the prognosis for HIV infectees was bleak. Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life. However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.
- · The proportion of our affected community that will receive the ex gratia payments is roughly 15%. I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.
- · I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed. I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not. I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help. But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.
- · For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans. You say it is up to them when and if they administer the same arrangements. I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.
It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority. You asserted a number of times that this was not due to cost but how else can one view these measures?
For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness. Even then what we will be offered will be too little to be of much use and at a time which is too late. That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children. I’m not talking about a few exceptions within that 4000, I’m talking about most of us. It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.
I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since.
I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different. Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability? Would you please explain how you think the High Court ruling does not apply?
Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion. From the estimation I received from Anne Milton:
- · You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.
- · You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000. This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million.
- · Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.
My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products. It would also include payments of £750,000 to widows or families of those within the 4,700 who have died. That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have included carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.
We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring. And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.
You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:
- · A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion. Or £467,200,000 per annum for three years.
- · An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.
- · The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on. You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.
- · In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.
This illustration is my own and does not represent the views of anyone else. Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.
In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest. The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.
Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.
Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society. Not holding my breath for replies...
Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society. Not holding my breath for replies...
