A 12-year-old boy has been awarded £120,000 by a court that agreed he had been left severely disabled by narcolepsy triggered by the swine flu vaccine, following a three-year battle in which the government had claimed that his illness was not serious enough to merit payment.

The ruling is expected to lead to as many as 100 other families of people affected by the sleeping disorder after receiving the vaccine bringing fresh compensation claims, in a dispute where the government’s initial hostility was described by the family’s legal team as offensive.

“They felt quite insulted to have their condition basically dismissed as something quite trivial. They are incredibly needy. Some have lost their jobs, dropped out of university or seen their marriages break down as a result [of narcolepsy],” said Peter Todd, the solicitor for the family of the 12-year-old, a partner with the London firm Hodge Jones & Allen.

The youngster, whose parents have asked he remain anonymous, has become disruptive at school due to extreme tiredness brought about by the illness, triggered after he took the vaccine in 2009, the court heard. He has only one friend because the sleep disorder makes socialising difficult.



The upper tribunal court that heard the case, also heard that the boy is unable to shower unattended or take a bus alone and needs to take several naps during the school day. He is unlikely to be allowed to drive as an adult.

To say that it’s not impactful just makes me mad. Narcolepsy affects everything that Ciara does and always will do. Anthony O’Mahony

Others expected to bring fresh claims against the government, include the parents of a 17-year-old whose life was permanently altered by the condition, and an eight-year-old whose family relocated to California to seek better medical care.



The narcolepsy was triggered by the Pandemrix vaccine, made by GlaxoSmithKline, which was given to around 6 million people in Britain as part of a national vaccination scheme rolled out during the 2009-10 swine flu pandemic. While the swine flu outbreak never reached the proportions that had been feared, scientists now believe the vaccine caused narcolepsy in a small number of patients.

The government now acknowledges the link, but had previously argued those affected by narcolepsy do not meet the threshold for the Department for Work and Pensions’s compensation scheme, which automatically awards a £120,000 lump sum to anyone with “severe” and permanent disabilities as a result of certain vaccines.

Anthony O’Mahony, whose 17-year-old daughter, Ciara, developed narcolepsy after being given the vaccine in 2009, said that the government’s suggestion that illness was not “severe” was offensive to victims. “To say that it’s not that impactful just makes me mad,” he said. “Narcolepsy affects everything that Ciara does and always will do.”

His daughter received the vaccine in 2009 and in the months afterwards began showing symptoms of the sleep disorder, such as lethargy and sudden loss of muscle control. Twice, her mother has found her asleep in the bath and on several occasions she has fallen suddenly after losing consciousness.



The family only became aware of the link with Pandemrix last year and O’Mahony stresses he is not “anti-vaccine”, despite what happened. “There’s always going to be someone who has some kind of reaction to vaccines,” he said. “We just want an acknowledgement.”

Ciara is one of 74 others represented by Todd who are seeking to challenge similar compensation rejections by the DWP, and the group is pursuing a separate civil action against GSK. The costs of any financial settlement are likely to be met by the taxpayer because of an indemnity signed between the government and the pharmaceutical giant.

Narcolepsy is a rare but serious neurological disorder that affects about 31,000 people in Britain. It can cause sleep disruptions, including night terrors and hallucinations, and extreme drowsiness during the daytime. Some narcoleptics also suffer from cataplexy, where a sudden burst of emotion such as shock or happiness causes total loss of muscle control.

In 2013, a major study by the Health Protection Agency found that around one in every 55,000 swine flu jabs led to narcolepsy, but the exact biological causes for the link are not clear.

To qualify for the DWP’s Vaccine Damage Payment Scheme, a victim has to be classed as at least 60% disabled, which is described as equivalent to the loss of one hand.

Matt O’Neill, chairman of the charity Narcolepsy UK, said: “The problem is that it is often hidden condition, but there are so many things that people with narcolepsy can’t do that you would be able to do with a physical disability. To suggest that narcolepsy is not severe is absolutely ridiculous.”

The government now has 21 days to appeal the ruling. A spokesman for the Department of Work and Pensions said the government would not comment on individual cases, adding: “The Vaccine Damage Payments Scheme provides support in very rare cases where someone has become severely disabled as a result of immunisation against certain diseases. Decisions on claims take into account the individual circumstances of each case and the latest available medical evidence.”

A GSK spokesman said: “We are actively researching the observed association between Pandemrix and narcolepsy and the interaction this vaccine might have had with other risk factors in those affected.

“We’re also continuing to support ongoing work from other experts and organisations investigating reported cases of this condition and we hope these efforts will enable us to provide more answers in the future. We take the safety of patients who entrust their health in our vaccines and medicines very seriously.”