When Lucy Tonge started drifting off in front of the television as a 13-year-old, her parents put it down to typical teenage lethargy. And when she developed a strange habit of slumping forward when she laughed, her mum told her: “Stop doing that stupid thing when you laugh. It makes you look silly.” But she couldn’t.
It was only when she started collapsing with no warning that her family sought medical advice that led to a diagnosis of narcolepsy. Soon afterwards, Tonge discovered that her sleeping disorder was very likely to have been triggered by the swine flu vaccine, which she had received in 2009 a couple of months before her symptoms first emerged.
The government has acknowledged the rare side-effect of the Pandemrix jab, which was given to 6 million people in Britain during the 2009 and 2010 swine flu pandemic, but the Department for Work and Pensions (DWP)has rejected the compensation claims of about 80 people including Tonge on the grounds that their disabilities were not “severe”.
Tonge, who celebrated her 18th birthday last week, described the government’s stance as unjustifiable, saying narcolepsy had changed her life has been changed deeply and irreversibly.
She falls asleep on average 40 times a day, sometimes for a few seconds mid-conversation, but other times for a lengthy nap. She also suffers from cataplexy, the complete loss of muscle control after a sudden burst of emotion such as surprise or happiness.
“I’ve had some bad experiences, falling down stairs or off a chair on to tiles,” she said. “Sometimes my neck falls too far back or forwards and it can restrict my breathing, which is terrifying really.”
Taking public transport on her own is a risk but her condition rules out learning to drive, and her A-levels were a struggle that she only got through with gritty determination.
“It’s two years I’d quite happily forget,” she said. “I used to be a complete bookworm, but I can’t really read anymore because I have to exert so much energy to get through a passage. It’s quite distressing really.”
Her Spanish A-level exam, which normally takes two hours and 45 minutes to complete, took her five and a half hours. “You listen to something once and then you fall asleep,” she said.
When Tonge goes on a rare night out with friends she has to decide whether to come off her medication so she can have a drink, and she worries about her safety in the dark, chaotic atmosphere of a nightclub.
“When you have cataplexy it makes you slur and stagger and look like you’re drunk. I’ve been in situations when I’ve had to hang on to someone for a few minutes and people have thought I was drunk.”
She takes three medications for narcolepsy and two others to deal with the side-effects they produce.
Despite the hurdles she faces, Tonge is optimistic, independent and enthusiastic about her future. She is looking forward to moving out of home in September, when she hopes to study radio production at the University of Westminster.
The DWP wrote to Tonge’s family in 2013 to acknowledge that the vaccine, made by GlaxoSmithKlein (GSK), had caused the disorder. It argued, however, that she did not meet the threshold defined as 60% disabled, equivalent to the loss of a hand, for its statutory damages scheme, meaning she was not eligible for any compensation.
Her family now intends to appeal against the decision.
“When we got the letter, my mum was so angry. I was angry too, but my immediate reaction was just to laugh,” she said. “It was ridiculous. If someone has an incurable neurological disease caused by a vaccine they’ve been recommended to have by the government, you need to compensate them for that. You shouldn’t have to prove you’re damaged enough.”
A government spokesman said: “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 representative 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.”
This week, the group was given fresh hope that the challenges they face will be acknowledged after a tribunal ordered the government to pay £120,000 in damages to a 12-year-old boy whose narcolepsy was also linked to Pandemrix.