Meeting 1 - 28 November, 5 pm
CBC with Diane Abbott, Shadow Secretary of State for Health
Diane Abbot started the meeting by saying that she knew all about the contaminated blood situation because she was in the House when Andrew Lansley announced the review in January 2011. She went on to say that her understanding is that there was some kind of increased financial settlement but it is not satisfactory therefore "it's more money that you want to talk about." CBC pointed out that this shows how Andrew Lansley's statement has led MPs to believe that all contaminated blood victims have received a satisfactory settlement when this is far from the truth. We explained that, in reality, less than 20% of HCV victims received help from the review. We gave her research evidence showing that the ill-health effects among the stage 1 group can be equal to, and for some, worse than at stage 2. We pointed out that the Caxton Foundation is not a satisfactory solution. Ms Abbott said that she thinks one of the reasons that the government sets up systems like that is to make it more difficult to claim so that fewer people will do so. Ms Abbott said she will be interested to hear the outcome of our meeting with Anna Soubry to find out if she's "giving ground". She then said "But if she's not, I can write to her and put pressure on her".
Meeting 2 - 29 November 11.30 am
CBC with the All Party Parliamentary Group on Haemophilia and Contaminated Blood (APPG)
CBC described how our group had been formed following the 2011 review of support for contaminated blood victims and told them about the financial challenges and hardship experienced by those who were excluded from the ongoing payments. We explained that Caxton has proved to be far from a satisfactory solution and stressed that removing the 2 stage criteria is the most urgent aim of our group. We presented and explained the documents that CBC have produced, based on sound research evidence, to prove that the 2 stage system is unfair.
CBC brought up the subject of assessments for eligibility for benefits and APPG representatives gave good reasons why contaminated blood victims cannot bypass the usual assessment processes. However, they said that, providing absent members agreed, they could write to the Minister and ask for a specialist panel to be set up to carry out disability benefits and back-to-work assessments with the contaminated blood community as is the case with military applicants.
The possibility of a compensation scheme similar to the Irish model was discussed and all agreed that this would be based on assessment of damage to health both physical and psychological, and the financial losses incurred by each individual. The APPG representatives said that they were in favour of this, but the possibility had been rejected by Government because they wanted to channel all available funding to the victims rather than lose a large proportion of it to high administration costs, as was the case in Ireland. This was the reason for implementing ongoing payments to those who currently receive them.
Discussion took place on whether the APPG supports only haemophiliacs or the wider spectrum of victims of contaminated blood and blood products. It was confirmed that, following some debate on this when the APPG was set up, it was agreed that it should be inclusive of the entire community of contaminated blood victims. The title of the APPG was carefully thought out to reflect that decision. CBC pointed out that whilst we recognise differences in the way that those with bleeding disorders are affected, we agree that culpability on the part of the DoH is similar in both cases.
Meeting 3 - 29 November, 2 pm
CBC (Glenn and Jan), Tainted Blood, Manor House Group and Haemophilia Society
with Anna Soubry, Secretary of State for Public Health and members of the 2010 expert group and officials
There was a fair amount of discussion throughout the meeting raised by TB, MHG and HS, who made some valid points on the unique effects of HCV on haemophiliacs because of their exposure to multiple viruses and pathogens. The experts conceded that not enough research had been done in this field, but pointed out that carrying out and evaluating such research would take many years. There was also discussion on shortcomings within the administration of UKHCDO. Discussion on this did not reach a definitive conclusion.
Points relating to the unfairness of the Skipton Fund's exclusion of stage 1s from ongoing financial assistance were raised by all campaign groups. The experts and DoH recognised that some people in the stage 1 group can be equally as sick as those in stage 2, but said that it would be inappropriate to remove the stages when some people in the stage 1 group are (in their opinion) minimally affected. The campaign groups disputed this and pointed out that even the most mild effects of the virus, e.g. brain fog and chronic fatigue, are a barrier to people's full earning potential. The Chair of the expert group, Brian Gazzard said that they had included EHMs in the review document and CBC agreed but said Government have not recognised this properly. It was also stated Government pass the responsibility onto the experts, when it is Government themselves that make the decisions. Further discussion on research showing that the Hep C virus resides in the brain took place and Brian Gazzard said that his opinion is that the virus does affect the brain but they struggled with how to define the severity of it.
Anna Soubry and Dr Jecock claimed that the Caxton Foundation is in place to provide for stage 1s, but all campaign groups outlined the problems that people experience both in registering and claiming from the fund. CBC stressed that a charitable fund is not an acceptable solution to resolve the financial problems of people whose health has been damaged through no fault of their own and asked why they can't all be included in the ongoing payment system. We were told that this is because there are people in the stage 1 group who are minimally affected and it wouldn't be fair to include those in the ongoing payment system. CBC pointed out that there are people with cirrhosis who are minimally affected and there are people seriously ill and even dying of effects of HCV other than cirrhosis, therefore the system is not fair, but the DoH representatives persisted in saying that the Caxton Foundation is there to help those people. CBC persisted in saying that Caxton is not a satisfactory solution. We also raised the point that the tests for cirrhosis are not reliable and pointed out that the readings can vary widely when the same patient is tested at various intervals.
Further discussion took place on the problems of applying for funds from Caxton, including long waits for answers and the complex means-testing form that registrants are required to complete. Chris James reminded everyone that Anne Milton had promised that the application process would be made as simple as possible but this is not the case. Anna Soubry replied that she had seen the application form and was unimpressed. She promised to write to Caxton as a matter of urgency and attempt to smooth out the problems. CBC repeated that solving problems with the Caxton administration is not the answer because people shouldn't be expected to beg from a charity for their every need.
Charles Gore of the Hep C Trust pointed out that the impact of cirrhosis might not be apparent for a number of years and the choice of cirrhosis as a criterion for stage 2 was arbitrary. Brian Gazzard replied that there is a 2% - 5% higher chance of dying with every year that someone has cirrhosis and Charles Gore replied by asking whether the payments are for an increased risk of death or to help with the difficulties of living with Hep C, but the question remained unanswered.
The positive points that came out of the meeting were that Brian Gazzard said that he is confident that a cure for Hep C will be available with the next 3 or 4 years and Anna Soubry promised a 'crumb of comfort' in her intention to look at the shortcomings of the Caxton Foundation. We came away feeling that all the campaign groups had done the best job they could possibly do in terms of explaining the important points and putting over their concerns.
Meeting 4 - 29 November, 3.45 pm
CBC (Glenn, Jan, Lesley, Nick and some of our family members) with Anna Soubry and Dr Rowena Jecock, Head of Policy, Blood Safety and Supply
CBC persisted in stating the case for ongoing payments to be made to stage 1s but were told it would be wrong to pay out when some people are minimally affected. CBC said this was penalising those who suffer from serious effects of HCV that are not included in the stage 2 criteria. We also pointed out that everyone has suffered some degree of liver damage but that the bar is too high even for those to be included in the stage 2 group.
The intention to iron out problems with Caxton was confirmed and extended further to include calling them in to a meeting at the DoH to discuss the concerns. We were told that Caxton are already looking into the possibility of providing 'income support'. When asked what was meant by 'income support' the answer was not clear. When asked when the meeting between the DoH and Caxton would take place the Minister said it was unlikely to be before the New Year.
CBC continued to stress the reasons why applying for charity handouts is not acceptable for people who are struggling with the effects of an illness caused by NHS treatment. We continued to argue our case until we were eventually almost pushed out of the door.