Baroness Lynne Featherstone writes…The State killed my nephew

It’s true. Nick was a haemophiliac and was infected with Hepatitis C and exposed to CJD through NHS treatment. And the Government knew the treatments were contaminated. They were warned. The NHS used blood treatment which bought blood – from American convicts. But the government carried on using contaminated blood products despite those warnings.

The result was 4670 haemophiliacs in the UK infected with HIV, Hepatitis C or both – and many exposed to CJD. In regard of the latter the consequences of that exposure are still unknown. In terms of HIV and Hepatitis C almost all haemophiliacs were infected with one or other or both. Over 2000 have died.

Nick died of Hepatitis C – or rather he died from a treatment meant to cure it. Nick was 35 years old, and left a 10 month old daughter, his partner of fourteen years. Nick’s mother (my sister), his father and his twin will never get over that loss. And that loss is made worse by the battle to get financial support and to get the government to admit its fault. It has never done so. The crucial papers were destroyed according the Department of Health.  Lord David Owen, former British Health Minister said ‘I can see why some people would be unhappy with having all the facts revealed because it will show negligence’.  No public inquiry has taken place. It must.

On Tuesday there is a backbench business debate on the contaminated blood scandal – ‘the worst treatment scandal of the NHS in its history’ to quote the eminent Robert Winston – Lord Winston. The timing of this debate is to coincide with the conclusion of a new (yet another) consultation on the needs of those infected and those bereft.

It’s not called compensation because the government won’t accept liability.

Some money was made available during the coalition government for the first time – but nowhere near enough to help those in dire need – live their lives. The proposals in this current consultation are derisory.

To demonstrate the paltry nature of the government ‘offer’ let me give you just one little example of the Government ‘proposals’. Currently those infected with HIV or who have advanced disease (Hepatitis C Stage 2) currently receive payments linked to the Consumer Price Index of £14,769.00 per annum.

The government proposition is to raise this to £15,000.00 – but at a flat rate – so within a very short time it will reduce the value of that payment to below that which haemophiliacs have currently.

The government states in the consultation document that this is ‘an increase on the current amount’! So shameful. So disingenuous.

Scotland is offering £27,000.

Ireland has really stood by its responsibility to the Heamophiliacs they infected with proper compensation. They have also enabled haemophiliacs to get health insurance by paying the loading of the extra cost for that condition, as it is very difficult and very expensive to get health insurance for travel etc. They have also given their haemophiliacs priority in the NHS system, as there is often need for quick treatment. When Nick died the ambulance service refused to send an ambulance and my sister was forced to get a private ambulance to get him to hospital where he died two days later.

Out of whatever money is on the table the government has the gall to suggest that some of that money be used to pay for the new treatment for Hepatitis C which has been passed by NICE and which has a 99% cure rate. Too late for Nick sadly. How dare the government even suggest that this money (inadequate as it is) should be used to pay for this new treatment? The new treatment should be on the NHS. Infected by the NHS it is inconceivable that Her Majesty’s Government would use money that is meant to help the families of those haemophiliacs who have died and make life possible for those infected with HIV or Hep C to pay for treatment for Hep C!

Our government needs to act for English Haemophiliacs – generously and properly. I hope anyone who responded to the consultation told the government in no uncertain terms how paltry, mean and demeaning the offer is.

When the minister rises to respond to the debate in the Commons on Tuesday they had better do the right thing – for the haemophiliac community will not rest until they get justice.

* Lynne Featherstone was the MP for Hornsey and Wood Green from 2005 to 2015, and served as a minister in both the Home Office and Department for International Development. She blogs at www.lynnefeatherstone.org.

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4 Comments

  • As the recipient of a transplanted organ (third time lucky – two earlier organs were rejected by the surgeons for what were described as “lifestyle” reasons), I have a personal interest to declare in matters such as this.

    First though, I express my sadness for Lynne and her family for their loss.

    This issue is about more than compensation – it is also about safeguarding the rights and the lives of recipients of blood.

    Two matters give me concern.

    1. I have great reservations about the Bill Tim Farron is pursuing to enable sexually active gay men to become blood donors. I need reassurances that scientific evidence supports this…………. and that it is much more than a method of placating certain groups in the party after certain issues were raised by the other side in the Leadership election last year. Recipients and their families have rights as well as potential blood donors.

    2. If the NHS was purchasing blood from the USA, what guarantee do we have that the situation could worsen under TTIP ?

  • Peter Adlam 11th Apr '16 - 2:25pm

    As one of the surviving 270 Haemophiliacs who were infected with both HIV & Hep C I’d like to thank you for writing this – It really hits the nail on the head. Other countries have jailed politicians and health officials over the scandal but the uk has – for the past 30 years – fought against any hint of blame and proper recompense for those infected and affected. I’m sorry for your families loss.

  • Eddie Sammon 11th Apr '16 - 2:31pm

    First of all I would be furious if something happened to one of my nephews or close relatives that happened to Lynne’s. I know I’d be furious because I’ve been in a similar situation and when you feel one of your loved ones is fighting for their life you do anything you can to help.

    I didn’t want to mention the gay blood donation proposal, but as David Raw mentions it I have to agree. If there is a higher risk of infection from these donations then is it a good idea? I don’t know much about it, but we need reassuring and you have mentioned American convicts, so some groups probably are at greater risk.

    Blanket statements such as “no evidence to support a gay blood ban” won’t win people over because people mislead others and what they often mean is “no evidence that satisfies me”.

    There has also been previous evidence that some restrictions are justified:

    http://www.independent.co.uk/life-style/health-and-families/features/why-cant-gay-men-donate-blood-10426364.html

    This also ties into the NHS emergency services strike. People could die as a direct result of this too and if we want to do everything we can to help others then we need to try and stop this and not just allow doctors to write their own contracts.

  • Lorenzo Cherin 11th Apr '16 - 4:05pm

    Outstanding contributions , from the excellent article by Lynne Featherstone , and the colleagues above.

    Sympathy , of course , first of all to Baroness Featherstone and her family for their tragic loss .The comments she makes come from the heart .

    I am no doctor, but , I am someone who , for various personal and family reasons I have alluded to before , has huge direct experience of the NHS.This is no time for the detail of such things , but I find it a very flawed service at many levels , and , despite it having our support , it is in need of massive improvement, to say the least .

    It , like so many big organisations , is at its worst when found out .Mid Staffordshire is the most important example .But every other one is important , too .

    Lynne mentions , Lord Owen .His faith in the system is admirable , but I do not share it , it is good to see him criticise it when it deserves it .

    Mention too of , NICE, which so often is anything but that !For a change , though with the usual parsimonious approach , the latest treatment is made available .

    We need a cultural attitude that recognises good and bad practice is everywhere , public and private , and then builds on the one and spreads it , and beats the other and defeats it .

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