Pandemrix Vaccine: Compensation

Tracy Brabin Excerpts

Wednesday 8th March 2017 Westminster Hall

[Joan Ryan (in the Chair)]

Before the next debate begins, I am pleased to say that, on International Women’s Day, we have a woman Member opening her first Westminster Hall debate and a woman Minister to respond, and of course I am in the Chair. On this day, I thought that was worth remarking on. I call Tracy Brabin to move the motion.

[Tracy Brabin (Batley and Spen) (Lab)]

I beg to move,

That this House has considered compensation and the Pandemrix vaccine.

It is a pleasure to serve under your chairmanship, Ms Ryan, on the occasion of my first Westminster Hall debate. I thank my hon. Friend the Member for Liverpool, West Derby (Stephen Twigg) for his extensive work on this issue on behalf of his constituent Lucas Carleton. I also thank Mr Speaker for allowing this debate to take place. It is vital that Parliament considers this matter and public awareness is raised.

I will set out the effect that Pandemrix has had on several predominantly child patients and their families and discuss the need for the Government to acknowledge and express regret for what has happened to those patients and provide them with support. I will explain the challenges of accessing the necessary medication for affected people, and I will conclude by making recommendations to the Government.

Before I set out the issue at hand, I wish to be clear that, overwhelmingly, vaccines save lives. Thanks to vaccines, we have seen the eradication and near-eradication of diseases such as smallpox and polio, and I have no intention of discouraging parents from ensuring that their children receive tried and tested vaccinations. Quite the opposite—I want the Government to rebuild and maintain trust in our world-class inoculation programme. However, on occasion, certain vaccines have been shown to have damaged patients, sometimes with life-altering consequences. All precautions should be taken to prevent that from happening, and pharmaceutical companies and the Governments that give those companies indemnity should take immediate and full responsibility when that is shown to have happened and, having accepted responsibility, do all they can to support affected people.

I worked to secure this debate because I believe that Parliament and the Government must listen to and support individuals and families who have been affected by narcolepsy and cataplexy as a result of the Pandemrix vaccine. I became aware of this issue when my constituent Di Forbes came to one of my regular advice surgeries. Di has travelled to Parliament to watch these proceedings, and I hope that she will be able to travel home to Batley and Spen having received some assurances from the Government. Di explained to me the damage that the Pandemrix vaccine has caused her son Sam and the unacceptable battle that she has faced while seeking financial support to secure his long-term care and the appropriate medication for his condition.

By way of background, the Pandemrix vaccine was developed by GlaxoSmithKline and given to 6 million people during the global H1N1—swine flu—pandemic in 2009 and 2010. Owing to the nature of that pandemic, the European Commission, on the advice of the European Medicines Agency, fast-tracked the vaccine’s licensing. The UK Government then undertook a vaccination programme, based on advice from the Joint Committee on Vaccination and Immunisation. In short, Pandemrix was licensed for use in the EU, including the UK, without the usual clinical trials having been completed.

[Julian Sturdy (York Outer) (Con)]

I congratulate the hon. Lady on securing this important debate. My constituent Ben Foy suffers from narcolepsy and cataplexy caused by the Pandemrix vaccine. I raised his case in the House in 2014, 2015 and 2016, and I now do so in 2017. The Department for Work and Pensions accepts the causal link between my constituent’s illness and the Pandemrix vaccine that he received, on NHS advice, in 2010. Does she agree that the Government have a moral obligation to quickly resolve the issue of payments to those who have been so badly affected by Pandemrix, not drag the process out with unsuccessful appeal after unsuccessful appeal, which is what seems to be happening at the moment?

[Tracy Brabin]

I will come on to that point, but I totally and utterly agree. As the hon. Gentleman will know, the Government’s foot-dragging is causing unacceptable and upsetting suffering and distress for the families involved.

Although I acknowledge the difficult balancing act involved in weighing the risk of a pandemic against the risk of fast-tracking a vaccine’s licensing, that does not excuse the fact that some patients were not made aware of the facts, nor does it excuse the Government from subsequently attempting to avoid responsibility for the damage caused. Making the vaccine available at the time of the pandemic clearly came with a degree of risk. GSK was given an indemnity from any liability by the UK Government. My constituent has made it clear to me that she was not informed that the vaccine had not been fully tested or that GSK had obtained an indemnity. Therefore, as the result of advice given to his mother by the NHS, my young constituent Sam received the vaccine on 27 April 2010. He was four and a half years old.

Four months later, concerns were raised in Finland and Sweden about the association between the vaccine and narcolepsy. Following that, a study by the UK Health Protection Agency and others, which was funded by the Department of Health and the HPA, found that around one in every 52,000 to 52,750 Pandemrix jabs led to narcolepsy. The results of that study were published in The BMJ in 2013 and were consistent with the findings of the aforementioned Finnish and Swedish studies. Pandemrix stopped being given to children in the UK in 2011, but that was too late for Sam and dozens of children like him.

Sam has been affected by 14 severe or chronic neurological issues, including narcolepsy and cataplexy. He suffers from night terrors in which he can see and smell dead people. He suffers from a damaged heat regulation system, automatic behaviour, micro-sleeps, temper issues, joint and muscle pain, anxiety and depression. Sam is now 11 years old and has faced unimaginable strain. In addition to being prohibited from enjoying a normal childhood, he lives in a world in which most people know little about his condition and misunderstand his symptoms. Shockingly, on one occasion while Sam was passed out in the street as a result of his condition, a dog walker allowed her dog to urinate on him. No 11-year-old should be expected to face the indignity and pressures that children such as Sam live with as a result of the Pandemrix vaccine.

Tragically, Sam has tried to commit suicide several times. We know from a coroner’s report that one 23-year-old woman took her own life after telling her family that living with narcolepsy after receiving Pandemrix had become unbearable. This is all too desperately sad.

The link between Pandemrix and narcolepsy has had a profound effect on families. My young constituent’s parents have found themselves under immense pressure, and in October 2016 his mum Di had no choice but to call a liquidator into her engineering business. It was impossible for her to work and ensure that her son’s complex care needs were met. Life is unacceptably hard for Di and Sam. They are very grateful to Narcolepsy UK, which receives no assistance from the Government but has been a source of huge support for them.

The Vaccine Damage Payments Act 1979 was intended to help to ease the burden on individuals for whom a specified vaccine had caused severe and permanent disability.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing forward this important case. The Court of Appeal has ruled very clearly on this matter and issued a telling judgment that opens the door to people who have suffered as a result of this so-called vaccine. I believe that its decision enables those people to get the compensation that they need, both physically and morally. Does she feel that the Government must now follow suit and give the go-ahead for compensation to be released?

[Tracy Brabin]

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 31 August 2010, the reason given for refusal is that the vaccine does not fall within the remit of the Act. All appeals against the decision to decline payments are being held up while the Government battle the family of the aforementioned child through the courts. Most recently, the decision for the child to be awarded the payment was upheld at the Court of Appeal. I sincerely hope that the Government will accept that outcome and take the case no further.

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 publish 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.”