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I survived meningitis but we're not doing enough to help children today

Comment: Victoria Pease says awareness campaigns aren't enough to fight Men B; vaccination is.

By STV News

Published 26 Apr 2016.

As an 18-year-old student stumbling up the corridor of my halls of residence, slurring for help, dragging my numb left-side limbs behind me, I thought 'this is the worst hangover I've ever had'.

It wasn't, of course. Neither was it the stroke a hall assistant diagnosed in a panicked voice down the phone to the emergency services or "a bad pill" nurses at the local hospital urged me to come clean about.

For days it was being so physically exhausted I couldn't grab another cardboard container to vomit in, ruining another set of NHS bedsheets. It was not remembering my name. It was the terrified look on my mother's face as a doctor prepared to stick a giant needle in my back for the first of two lumbar punctures.

Despite it all, despite the health problems I've been left with almost seven years later, I feel lucky that I had meningitis.

Because my meningitis, no matter how painful or exhausting it was and continues to be, was not meningococcal B. It was not a strain that could have left me with rotten limbs, severe brain damage or even killed me, the way it does for others across the UK today.

It was the strain that killed Faye Burdett, the toddler who died on Valentine's Day covered in blackened septicemia spots. Pictures of her tiny body in a hospital cot shot across the internet, released by her parents to raise awareness.

But instead of her story slowly disappearing, the way it sadly often does, it became the basis for a petition. A vaccine for Men B, the strain she succumbed to, could have prevented this from happening. But at two, she was just too old.

Meningitis used to be that chubby baby plastered across waiting rooms in doctors surgeries. We knew vaguely about a rash and to grab a glass, but what did it mean if the rash faded? Was that good or bad? Is there always a rash?

Now meningitis is Faye and it's the vaccination sitting right there in her doctor's surgery. In your doctor's surgery. And suddenly there was a collective public understanding, that we were sitting on something better than a cure. Prevention.

In 2014, the news that the Men B vaccination Bexsero had finally been approved in the UK came as a victory for victims everywhere. It took a further year for it to be added to the inoculation programme, yet we were still delighted. We were taking steps in the right direction.

It had been recommended by meningitis charities to be rolled out for all children under five, as meningococcal meningitis and septicaemia remains the leading infectious cause of death for children in that age group in the UK.

But it was decided, on the advice of the independent body Joint Committee on Vaccination and Immunisation (JCVI), that children born before May 1, 2015 were not eligible.

Still, there was a feeling of euphoria that we as victims and survivors, and family and friends, need not see images of children tangled in tubes and covered in blackened spots any longer. That, eventually, nobody would cry in pain, unable to identify why they felt so gut-wrenchingly ill, the way we did.

As survivors, we want to protect everyone else in this country from feeling the way we felt.

And then Faye died, 11 days after battling Men B. It was then that we realised we needed to go further, to protect more children and begin to eradicate this cruel disease for good, the way we've all but done with Men C for almost two decades.

Faye's brave family reminded us what the pool of eligible and non-eligible children really looked like: practically indistinguishable.

They created the most-signed petition in parliamentary history, calling for the vaccination to be rolled out for all children under the age of 11, which MPs debated in the Commons on Monday afternoon.

Yet, the UK health minister Jane Ellison rejected the petition on the grounds of cost effectiveness.

The stories that had echoed around the chamber, not just of Faye but of Charlie, Harmonie-Rose, Mason and many others told to and shared by MPs were ignored. Calls for a compromise for children under five to be vaccinated were shot down. We were even told that the decision to inoculate children under the age of one in the first place was narrowly accepted.

For Scots who signed the petition there is no way of knowing which side Holyrood will take. While health is devolved in Scotland, precedent dictates that we will follow the JCVI's recommendations in the same manner as England and Wales.

The cost of producing and paying for a massive expansion to the initial programme on the NHS would be huge. But this matter of cost effectiveness, thrown back in our faces time after time is flawed in itself. The JCVI does not fully consider the lifelong implications of meningitis and the utterly devastating impact this disease leaves behind for its victims, the lucky ones that survive.

Because they need physiotherapy for their new prosthetics. Medication for epilepsy. A never ending stream of wheelchairs and house accessibility modifications for those left immobilised. Specialist school placements. Parents who become their child's carer, losing their jobs and in some cases missing mortgage payments.

It is estimated by the Meningitis Research Foundation that a severe case can cost the government up to £3m in medical litigation.

It is only now, following a debate thick with emotion yet full of reason, that the JCVI will review how it measure a vaccination's cost effectiveness, the health minister said. Saving lives is just as important as protecting children from having to learn to walk for a second time on prosthetic limbs. The emotional cost of both and the financial of the latter should all be taken into account.

While this debate has taken place, the reality of the situation has played out in GP surgeries across the country. Peace of mind, again discounted by the health minister when considering the petition, has proven to be far more powerful than she gave it credit for in her speech. So much so, thousands of parents have paid for the vaccine privately in the UK to the point there is now a shortage of private stocks of Bexsero. That we are willing to pay for this peace of mind shows how determined we are to protect our children.

We are the envy of the world with this vaccination, so much so Ireland has become the first country to follow suit and introduce Bexsero to its inoculation programme. While the minister recounted that cases of Men C have fallen so dramatically to just 30 a year in her argument against expanding the jab's reach, she negated to explain this was due to one of the most successful vaccination campaigns in the UK.

The Men C strain has been all but eradicated since the vaccine was introduced in 2000 with a catch up programme ensuring children to teens could also be protected. It was so successful that even unvaccinated people were still protected since the bacteria which allowed the strain to manifest was stopped dead in its tracks.

It's what we could do with Men B if only our hands weren't tied.

Monday's debate did offer shreds of hope in the form of an adolescent study to see if inoculating teenagers would be beneficial, that the health minister has asked the JCVI to advise her on a potential extension of the vaccine programme up to the age of two and that a new awareness campaign for meningitis, septicemia and sepsis would be rolled out. In the meantime, parents were asked to be diligent and just be aware of symptoms.

But as one parent angrily pointed out on Twitter following the debate, another awareness campaign isn't what is needed. A vaccine is what is needed.

Weeks after my month-long hospitalisation with meningitis, I returned to my halls of residence. Printed in neon and plastered on the communal fridge was the signs of meningitis and septicemia. It was in front of our faces and we still didn't see it. In our rooms were symptom cards handed out during freshers week and we didn't think about them.

We must do better in explaining to parents, students and adu lts themselves that meningitis in all its forms does not discriminate. There are different strains and even with the Men B inoculation, a baby is not immune from contracting a different strain. Symptom awareness needs to be drummed into the public psyche the way we check for lumps in our breasts or notice the first signs of a stroke.

But the fact remains that nothing will change until these tiny peace offerings of reviews and studies are completed. We may still be left with a tiny portion of the population vaccinated, the majority unprotected.

Will the parents of the next child to die because they were too old for a vaccine feel like the government felt their life was not worth saving? That could be the true cost of 'cost effectiveness'.

Comment by Victoria Pease, a digital journalist at STV. You can contact her at victoria.pease@stv.tv

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