On 10 December 2009, seven-year-old John was given a vaccination called Pandemrix against the pandemic influenza A (H1N1), commonly known as Swine Flu. Four months later, following extensive hospital examination he was diagnosed with narcolepsy and cataplexy, neurological conditions that will affect him for the rest of his life.
Narcolepsy is a very rare and incurable autoimmune sleep disorder caused by the destruction of the part of the brain that produces hypocretin, a peptide that regulates sleep. Sufferers regularly experience episodes of drowsiness or excessive daytime sleepiness. Cataplexy is a condition characterised by sudden, profound muscle paralysis, the onset of which takes several seconds, and often results in the sufferer collapsing.
These conditions may also be associated with hallucinations, behavioural and mood disturbance, as well as nightmares. John, now 14, experiences all of these symptoms.
Although millions of people in the UK received Pandemrix without complications, the 2009-10 pandemic vaccine has been found to have caused an epidemic of narcolepsy in the UK and in other European countries in which it was used. About 1,500 people across Europe are thought to be affected, of which about 100 have so far been identified in the UK. John, not his real name, is one of them.
Last month, the High Court heard an appeal from the Department for Work and Pensions (DWP) against a test case decision forcing it to pay £120,000 vaccine injury compensation to John.
In January 2012 he applied to the DWP for compensation under the Vaccine Damages Payments Act 1979. The claim was initially refused on grounds of lack of a causal connection between the vaccine and John’s development of narcolepsy and cataplexy.
“What I expect of a decent, caring society is that when vaccination programmes are implemented, they come with an implicit agreement between state and citizen that ‘should’ anything go wrong, that citizen will be looked after by the rest of us.”
Matt O’Neill, Chair, Narcolepsy UK
A few months later, a medical advisor to the government’s Vaccine Damages Unit said that there was, in fact, likely to be a causal connection, but that John’s condition had improved and his level of disablement was less than 60 per cent – the threshold required to meet “severe” disability criteria for awarding compensation. He was denied payment.
On 11 February 2014, then Secretary of State for Work and Pensions Iain Duncan Smith reversed his refusal decision of two years earlier, accepting that the vaccine had caused John’s narcolepsy and cataplexy. However, Mr Duncan Smith refused to accept that John was severely disabled, and his application for payment was therefore refused.
After John appealed the decision to the First Tier Tribunal, the DWP was ordered in September 2014 to pay out as it found his narcolepsy to be severe. The DWP refused and appealed to the Upper Tribunal, arguing that only problems John had now could be taken into account and not the future impact of his condition.
In June 2015, the Upper Tribunal rejected the DWP’s submissions and dismissed their appeal. The DWP agreed to and paid-out the £120,000 compensation to John. However, it decided to go to the Court of Appeal, maintaining that the proper approach to assessment of disability is to ignore any aspects of the disability that may be experienced in the future.
It is the first time the Court of Appeal is considering a case of vaccine injury compensation under the UK statutory compensation scheme. Its decision will be binding on all future assessments of disability brought under the 1979 Act. Payments were then fixed at £10,000. Now they are £120,000 per person, so with around 100 victims seeking compensation under the Act, the DWP will be faced with a £12m bill if it loses.
Defining an individual as ’60 per cent disabled’
At Thursday’s hearing Sir Terence Etherton who, as Master of the Rolls, is the second most senior judge in England and Wales, Lord Justice Davis and Lord Justice Underhill listened to the government’s case. Adam Heppinstall, representing the Secretary of State, said the principal argument is that it was “wrong in law” for the Upper Tribunal to conclude that assessment of an individual’s disability under the statutory scheme require’s a decision maker to take into account that person’s likely future disablement in addition to his condition at the time of assessment.
“In this respect, the Upper Tribunal adopted a speculative approach, not called for by the legislation, which carries with it substantial problems and the risk of unfairness,” Mr Heppinstall said. “The Secretary of State calls for a more factual approach, in which only the present disablement can be taken into account.”
He told the court other grounds for appeal centred on how someone is assessed as “severely disabled” and that the case raises “fundamental issues” which go to the heart of how all claims under the 1979 Act should be assessed and decided by the Secretary of State.
George Peretz QC, representing John, told the court: “There is nothing ‘speculative’ about looking at the impact of that continuing disability on an 11 year old boy as he progresses into manhood, taking into account the additional opportunities and responsibilities which that transition in life brings with it.
“The Upper Tribunal adopted a speculative approach, not called for by the legislation, which carries with it substantial problems and the risk of unfairness. The Secretary of State calls for a more factual approach, in which only the present disablement can be taken into account.”
Adam Heppinstall, counsel, Secretary of State for Work and Pensions
“As the Upper Tribunal rightly pointed out, the fact that injuries such as loss of a hand are regarded as amounting to 100 per cent disablement, and that, amputation of one leg at the knee is to be regarded as 60 per cent disablement, may be useful in providing a broad framework or starting point in assessing whether John’s narcolepsy with cataplexy amounts to 60 per cent disablement.
“Such a check, for example, rules out any suggestion that 100 per cent disablement is akin to total quadriplegia or a persistent vegetative state or that 60 per cent disablement cannot be established where an individual is able to carry on a reasonable range of daily activities.”
Mr Peretz used the example of paralympian and double-amputee Oscar Pistorious, who is defined as “100 per cent disabled”, yet was still able to compete at the Olympic Games.
Sir Terence said that it was obviously an important matter – not just for John and his family, but for the 30 outstanding cases waiting on the result. The judges reserved their decision.