The hon. Gentleman is right. There have been some one-off payments, but they need to be made across the board. The 1979 Act provides for affected patients to receive one-off tax-free payments of £120,000, which would go some way to securing their long-term care needs.
Prior to September 2013, the Government said there was insufficient evidence to establish a causal link between the Pandemrix vaccination and the development of narcolepsy. However, following the aforementioned study commissioned by the Department of Health that recognised the link between Pandemrix and narcolepsy, the Government have conceded and recognised the link.
In spite of the Government’s acceptance of the link between Pandemrix and narcolepsy, they have delayed the processing of applications by denying them, disputing the severity of the disability. They have even appealed a case in which they were ordered to make a payment to one such affected child. In my view, for the Government to make such appeals through the courts system is a poor use of public money and an insult to those families whose lives have already been turned upside down. I hope that the Minister will disclose how much public money has been spent in the courts to delay making payments to those affected by Pandemrix.
Sam’s parents made an application for a vaccine damage payment, which was unsuccessful on the basis that he is not severely disabled enough. For those vaccinated after
To give some context to the UK Government’s position, Sweden, Finland, Norway, Iceland and France have already compensated those who developed narcolepsy as a result of the Pandemrix vaccine. Sam is in receipt of disability living allowance, meaning that the Government recognise he is disabled. Why, therefore, do they not consider him to be disabled enough to qualify for a payment under the Vaccine Damage Payments Act? I say to Ministers: spend one day shadowing Sam or another constituent who is living with narcolepsy caused by Pandemrix, and I assure them that they will consider the disability severe enough for a long overdue payment from Government.
In addition to financial support through the Vaccine Damage Payments Act, children affected by Pandemrix require assurances over the long-term development and supply of the drugs that will alleviate their symptoms. Currently, my young constituent receives the drug Xyrem, which is expensive and not licensed for use in children. Sam receives it through a scheme funded directly by the UK Government and GSK, which has been a godsend to him and his family. However, there is a postcode lottery when it comes to access to Xyrem. Many trusts refuse to prescribe the drug, and until recently Sam’s prescription had to be collected from Sheffield Children’s hospital—a 60-mile round trip.
I am advised that the scheme that Sam and others like him currently benefit from is due to end in a year’s time. Sam’s mum advises me that he could not function without it, and as such I ask that the Government either commit to continuing the scheme in the long term or ideally provide an alternative that is secure and accessible to all. I also encourage them to consider opportunities to support research into medicines to alleviate the symptoms suffered by those affected. Clinical understanding of the condition is limited and there is definitely room for improvement.
I have a handful points on which I would be grateful for a response from the Minister. First, by virtue of GlaxoSmithKline requiring an indemnity, there was recognition that the vaccine carried a risk. Reliable studies now link the vaccine to narcolepsy. I would therefore welcome recognition from the Government of what has happened to those affected by Pandemrix and an apology to those families affected both by the incident and by subsequent refusals to provide support. It may be useful if the Government published the terms of the indemnity provided to GSK so that the public are aware of the acknowledgement of the risk carried by the vaccine.
Moreover, in response to my recent written parliamentary question 64695, the Minister said she has no plans to amend the Vaccine Damage Payments Act. I ask her to think again, particularly when considering support for those affected who received the vaccine after August 2011, because it is clear that when the law fails to work for children like my young constituent, it is time for the law to change.
We know that the Swedish, Finnish, Norwegian, Icelandic and French Governments have already made payments to those affected. The Government should therefore support those who have been affected, and they should be concerned about and apologise for the delay in making payments and its effects. They should also put an end to legal action to prevent payments to those who have been damaged by Pandemrix and they should end the delay in processing claims and appeals. They should also recognise that such delays can and will undermine public confidence in vaccinations, which is something that all those with concern for public health will wish to avoid.
I end with some words from Di, describing how Pandemrix has changed her life. Di said to me:
“Life after the vaccine is totally changed. Our son needs 24/7 care, including getting up several times during the night. He is in almost continuous, intolerable pain, had severe headaches every day. He’s not able to go anywhere without careful planning, needs schedule naps, has several specialist meetings every month, so misses school. Sam is scared for his future and we are frightened for his safety.”