Advocacy Contaminated Blood Hepatitis C HIV News Penrose Inquiry

Scottish Review of Financial Support Schemes meets for the first time

Financial Support Review Group

As part of the Scottish Government’s response to the Penrose Report, a group has been established to review the current financial support arrangements for people affected by the contaminated blood disaster.

The Scottish Review of Financial Support Schemes will produce advice for Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport, before the end of the year.  This is the mechanism that the Scottish Government are using to fulfil their commitment to take part in a UK wide review of financial support and to take moral responsibility for supporting those affected.

Because of urgent need for more support, the first meeting was arranged before a Chair had been found and was held on 11 June.  To get things moving Shona Robison agreed to chair the first meeting herself.  She is now handing over to Ian Welsh of the Health and Social Care Alliance who has agreed to Chair the process.

Some of the key decision from the first meeting were to,

  • accept the appointment of Ian Welsh as Chair.
  • accept the draft Terms of Reference and to incorporate the details of an alternative Terms of Reference produced by the Scottish Infected Blood Forum (SIBF) into the work plan.  Further consultation with the group will take place.
  • agree to consultation with the community to be carried out throughout the process.  Ideas about how this can best be achieved to be fed into Dan Farthing-Sykes of Haemophilia Scotland to be brought back to the next meeting.
  • agree to model the costs of several different potential approaches.
  • agreed to maintain confidentiality during the discussions but that a short factual note would be prepared after every meeting that could be shared with the wider community.
    Read the note of the first meeting in full.
  • request more detailed statistics on how many people were accessing the current support arrangements in Scotland.
  • agree to examine the cross-border issues if a Scottish scheme was part of any recommendation to the Cabinet Secretary.

There was also a discussion about interim / transitional payments following the announcements of £25 million by David Cameron. The intention seemed to be to channel this money through the Skipton Fund or Caxton Foundation to patients and families, but this was still not clear.

The Cabinet Secretary said that her intention was that,

Scotland will match any transitional payments – Scottish beneficiaries would not be disadvantaged.


  1. There are many issues to consider but for many of us if we do not receive help soon it will be too late as it has been for many others who have already passed away. We need an immediate removal of stress and living in poverty. The Skipton Staged payments need to be combined so those of us who are Stage 1 immediately receive Stage 2 payments now. This would bring so much relief to those of us who are under immense financial stress. I have a Lung Disease which is causing my lungs to become stiff just like the Hepatitis C virus causes the Liver to become stiff. However, despite the fact that the Hep C virus is attacking my lungs I am still only a Stage 1 recipient.

    My mortgage is high because I had to pay for a property and have it converted to house two separate households – for myself and my Carer. My mortgage payments mean that most of my benefits are used to pay my mortgage each month. Having just changed from an interest only mortgage in January to discover last week that the Government have REDUCED the interest rate for Mortgage Interest Support was devastating to discover. I now have to find a further £40 – £50 per month towards my mortgage from my benefits. What do I do? Give up. How much will it cost the Government to house me and also pay for separate accommodation for my Carer? What accommodation would I be offered? A one bedroom home because of the Bedroom Tax? That would mean getting rid of most of the aids I require to just live. I would have nowhere to put my outdoor wheelchair, nowhere to put my oxygen machine and oxygen equipment, and I would have to get rid of all my exercise machines which I rely on to keep my muscles working.

    Why did the Government reduce the interest rate – do they really believe that people who are in receipt of just benefits are able to access mortgages of 3% or even 3.5%? My interest rate is 5.5% on my mortgage and despite the fact that I have an excellent credit rating no-one will offer mortgages to people who are on benefits and especially to those who cannot get any type of insurance cover. Despite my financial situation I was not entitled to any money at all from the new regular payment scheme from the Caxton Foundation. Almost all my money has to be paid out to just keep a home for myself and my Carer. How much would it cost the government to provide suitable accommodation for a wheelchair user and separate accommodation for a Carer? When I look to see if I could look for a home just for myself I cannot even find one which has even one bedroom and a bathroom which would be able to be used by someone who needs to use a wheelchair.

    I also want some other things to be taken into consideration when setting up some kind of financial settlement. I understood that if the Government made a financial settlement to the victims of Contaminated Blood that we may be removed from the benefits system. However, if a victim is in receipt of DLA and other benefits because of having other multiple conditions and disabilities and was awarded the benefits because of these other disabilities is it going to be fair to exclude those people from receiving those benefits which were awarded for things which had no connection with the Hepatitis C infection?

    I am supposed to be able to use my DLA to pay for the things I need because of my disability but almost all of my benefits are used to just cover my housing costs for me and my Carer. If I was in rented accommodation those costs would be covered by Housing Benefit and I would have my DLA and other benefits to cover my other expenses. I consider myself to be one of the lucky ones – to actually have a proper home to live in. With my health problems it would be almost impossible for me to live in anything other than my own home. Some people are living in tiny flats with no room to put essential disability equipment.

    I do not understand why the Governments were not sorting all this out during the time while they were waiting for the Penrose Enquiry to report. They all knew what had happened. They knew that we were given blood that had come from prisoners and from people who were drug users sharing needles so they knew the blood and blood products were contaminated and knew the blood was being used with the full knowledge of the risks involved. They were not prepared to discard the blood because they put finance before the lives of thousands of people including whole families of Haemophiliacs. So why did they not prepare for what they already knew – why were they not ready with a fair system ready to be put into place as soon as the Penrose Enquiry reported? Why is this work only STARTING now?

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