Meningitis B: 'I can't let others go through what we endured'

At two years old, meningitis B nearly killed Sophia Crockatt. She survived, but lost a leg. A vaccine against the disease exists – so why isn't it made available? Charlie Cooper investigates

Fast girl: Sophia Crockatt (Colin McPherson)

The Crockatts have been to hell and back. Six years ago, Sofia Crockatt, then two, went to bed with flu-like symptoms. The next day she awoke feeling much the same. It seemed like an ordinary flu bug. Hours later, she was fighting for her life. Her father Nick, who has worked in the health sector, and mother Karen, who is a nurse, guessed the truth about Sofia's condition. Stories of children who appear to have an ordinary cold suddenly going into a life-threatening decline have become all too familiar – it was meningitis.

It's a disease that holds a particular terror for parents. The speed with which it sets in is, Nick says, "terrifying". Although it is comparatively rare, and certain strains have been all but eradicated, its impact is absolutely devastating.

Nick recalls the hours after he and Karen took Sofia to A&E at the Royal Preston Hospital, near their home in Leyland, Lancashire. "The recovery team told us the gravity of the situation. They transferred her to the Royal Manchester Children's Hospital. "We sat in silence, with no idea what this was going to lead to."

Sofia spent two weeks in intensive care. Once she was stable enough she was transferred to Booth Hall Children's Hospital. The damage to Sofia's legs was worse than previously thought. The disease often occurs alongside septicaemia that can cut off the blood supply to parts of the body. In extreme cases, limbs have to be amputated. "Her feet had gone black," Nick remembers. "We thought she would probably have to lose her toes and maybe part of her foot. It wasn't until later that we were told she would have to lose a leg."

After the amputation, Sofia began to recover quickly and was soon well enough to go home. The nightmare was at an end, but real life took over. Karen stopped working to take care of Sofia. Alterations were made to the house to help her get around. The loss of income and new costs meant that the family struggled to make ends meet.

There were regular visits to hospital for skin care and later for a prosthetic leg. Health visitors, psychologists and therapists all played a part in helping Sofia to recover from her ordeal. Last year, she became hooked on the Paralympics. Her sporting hero was the sprinter Jonnie Peacock – also a victim of meningitis. She wanted to follow in his steps and now has a running blade. On Saturday, the eight-year-old ran the 1.5km Mini Great North Run. Her dad ran the full event the next day. "If you'd said to us then where we'd be now, we'd have said: 'yeah, right'," Nick says. "Sofia could have gone back into herself because of the whole experience, yet she has bounced back phenomenally."

Sofia and Nick ran at the weekend in support of the Meningitis Research Foundation. The charity, which is campaigning hard this week during its annual awareness week, is at a crossroads. Vaccination programmes have been introduced that have dramatically reduced the incidence of most forms of meningitis, including meningitis C and pneumococcal and hib meningitis.

The final major strain of the disease for which no vaccine is currently available is meningitis B – the strain that it is very likely what Sofia contracted. That was set to change this year. A vaccine, which evidence suggested could protect against 73 per cent of the bacteria that causes meningitis B, was licensed by the European Commission. Bexsero, made by Novartis, immediately went to the top of the agenda for the UK's Joint Committee of Vaccination and Immunisation (JCVI) – the body that advises the Government.

It looked like meningitis was about to complete its transformation from a disease society could do nothing but react to, to one it could effectively prevent. "We've had awareness campaigns for more than 20 years," says Linda Glennie, head of research and medical information at the Meningitis Research Foundation. "We've improved recognition and treatment. We've made such progress but I think we've reached the limit of what we can do. With the best medical care in the world, children are still going to die. Really, the only answer now is prevention."

But to the surprise of many, the JCVI said in July that it could not recommend the vaccine be provided on the NHS. In a statement, it said that "on the basis of the available evidence" the vaccine was "highly unlikely to be cost effective at any vaccine price". A final decision is due next month. The JCVI, of course, must make difficult decisions about how to ration NHS resources. If the NHS spends millions on a meningitis vaccine, possible life-saving new treatments for other conditions have to be passed over.

Despite the fact that Novartis has not even set a price for Bexsero, the committee is understood to have used mathematical assessments similar to those used by the National Institute for Health and Care Excellence (Nice), based on the likely cost of the vaccine. These assessments are known as quality-adjusted life years (Qalys). Analysts determine the number of years a treatment could give patients, and the quality of life they would have in those years. One year alive but seriously ill gives a Qaly of 0.1, a year of perfect health a Qaly of 1.0. Generally, Nice will recommend something if the overall cost to the NHS works out at under £20,000 per Qaly.

The problem with Bexsero is that meningitis B is so rare, it is impossible to assess the vaccine's effectiveness without a study involving hundreds of thousands, if not millions, of people.

It is also not known whether the vaccine will stop immunised children passing on the meningitis bug to other children – a major benefit that might change any cost analysis – which leaves the JCVI in a bind. It can't recommend the vaccine until it knows the full benefit; it can't know the full benefit without recommending. With the evidence that exists, though, it says the cost burden to the NHS cannot not be justified.

"Nobody has a perfect system for exercising judgement on the incremental benefit of new treatments," says Sir Andrew Dillon, the chief executive of Nice. His organisation had nothing to do with the JCVI's decision, but few know the difficult judgements required in healthcare rationing better. "There's a finite amount of money and a largely unlimited call on the resource – you have to make judgements about how to apply a limited resource – and to do it as fairly as possible." These judgements go beyond just "numbers on a piece of paper", he says, and committees are able to use their discretion.

If the JCVI rules out a national vaccination programme, the vaccine will still be available, but only privately, at an as yet unknown cost.

The Meningitis Research Foundation and Novartis think that the JCVI has underestimated the lifelong burden of the disease. Nick Crockatt and his family can certainly testify to this. Although Sofia is doing well now, it has been far from easy. The cost to the family extends into the hundreds of thousands financially, and is impossible to quantify emotionally. Nick understands how hard the JCVI's task is. But the thought that there is a warehouse full of vaccines that could save other children going through what his daughter went through is one that he cannot countenance.

"As far as I can see ,they've mostly looked at the short-term cost. There are more and more kids, like Sofia, surviving with amputations. So the long-term cost of caring for these children throughout their lives will actually increase for the NHS. In October, when they make their final decision, I just hope they give it a second look."

meningitis.org

To give to Nick and Sofia'sJustGiving page visit justgiving.com/Nick-Crockatt

Anatomy of a disease

* Meningitis is an infection of the protective membranes that surround the brain and spinal cord. There are two major types: viral meningitis is more common and less serious; bacterial meningitis is very serious.

* Meningitis B accounts for around 80 per cent of all cases of bacterial meningitis. About half of those who contract the disease are children under the age of two.

* The UK has the fourth highest incidence of meningitis in Europe. There were 613 confirmed cases in England and Wales in 2011-12. Thirty-three people died – 15 of whom were aged nought to four.

* Roughly one in 10 survivors will have major disabilities, physical, neurological or both.

* In the past decade, incidences of the disease have declined, but historically, incidence has fluctuated and experts think it may increase again.