(Trigger Warning - child death) Meningitis B catch up programme (petition included)

[tarafitness]

Hello everyone

A woman I know whose daughter was born around the same time as my 2 year old, has just lost her to Meningitis.

You can read about how Faye bravely battled this disease for almost 2 weeks here. But please note that the photograph of her in hospital is very distressing

Had Faye been born 18 months later, she would have been included in the new vaccination schedule, and her parents would not be grieving the loss of their beautiful only child to a disease that could have been prevented. Valentine's Day will forever be marked for the most heartbreaking of reasons.

Please please sign this petition to encourage the Government to initiate a catch-up programme for the children who have missed out on this life-saving vaccine.

Also please familiarise yourselves with the symptoms of Meningitis. If you're under any doubt, seek medical help immediately. Faye's symptoms initially manifested as a rash on her forehead.

I was lucky enough to be able to afford the Meningitis B vaccine, but it is horrendously prohibitively expensive, and 3 doses are required to ensure immunity.

Faye's parents, Jenny and Neil, have given permission for her story to be told, in the hope that no other child in the UK will needlessly die from this horrific disease. If you could sign the petition and share it with as many people as you can (and my post too if you wish) - family, friends, businesses, MPs, etc, you will help enormously. The numbers have grown from 300 a week ago to 15,429 when I just checked now. You could make a difference!

Thank you

Tara

[Ellie78]

Signed.

[Rosetta]

Crying, signed.

[Saffron]

Wondering if maybe the thread title should state that there is a petition included? I almost didn't read the thread, bc catch up doesn't apply to us. Glad i looked in the end, though very sad to hear your friend's story. I think a rollout was part of the early negotiations to make Bexsero available on the NHS. Due to funding, it was decided the group most in need of coverage would be the under 1s. Agreed, we should keep pressing for wider availability. xx

[Dulwich Born And Bred]

Heartbreaking . Signed .

[Crokes]

Totally agree, heartbreaking. Signed.

[SebsC]

Just went and hugged my little one that bit tighter. Heart broken for her family. Signed.

[tarafitness]

Thank you all. The petition is well over 100,000 now and increasing still at a dramatic rate. It's had an amazing response. Faye's brave battle has obviously touched many hearts x

[sweetgirl]

Signed

[NannyAdelle]

Signed and shared. Tragic. So sad thoughts to her family x

[Strawbs]

Signed, so unbelievably tragic.

[Monkey]

Signed here too. All my thoughts and love to Faye's parents.

[PK36]

Story now on BBC website so that should increase the awareness: http://www.bbc.co.uk/news/uk-england-kent-35596857

[Belle]

I've seen this in about 5 different places today and yesterday which means it's getting wide exposure, which is good (in relative terms - it's really awful that it had a reason to be started in the first place). Utterly horrendous for the family. Will sign.

[louloulabelle]

I am deeply sorry for their loss, petition signed x

[adsyb99]

Anyone know of any places that have stock of the vaccine locally?

[buggie]

Know this could be a controversial viewpoint, but I haven't signed the petition, don't plan to & aren't going to looking to get my children privately vaccinated.

The evidence base which was used to plan the introduction of the Meningitis B vaccine shows the peak age for infection is 5mths and the 2nd peak as teenagers is growing smaller (?some relationship with them having had the MenC/hib imms as infants). There are just over 1500 cases of MenB annually with 10% mortality (http://www.meningitis.org/menb-vaccine & http://www.meningitis.org/facts), with babies (the most high risk category) being imm'd would expect to see a v dramatic drop in these over the next couple of years.

Rates of meningitis have fallen dramatically in the last 20yrs, something I was very aware of in my time in Paeds ED where in 10yrs I saw less than a handful of cases as terrible & with as sad an outcome.

While this case is devastatingly tragic, I have huge concerns about putting pressure on our over stretched resources by public pressure via social media rather than strong evidence base proving efficacy.

[sweetgirl]

I have rung round a number of private clinics as I would like to have my son vaccinated, unfortunately nobody has any!

I understand it is just one company who produces the vaccine & have been told by a few private clinics they all have waiting lists!

Health hub in herne hill have closed their waiting list & they are not expecting any supplies for at least 2-3months.

They told me they are getting one call a minute regarding this vaccine!

I sure would like to know if anybody knows of any clinics who may still have the vaccine......

[bawdy-nan]

What has happened to this child is awful. But, as far as I know, there isn't an epidemic of meningitis is there? Which is to say I'm hugely in favour of vaccination programmes for public health but I don't think people should be very worried if their child hasn't been vaccinated or if they can't find a private clinic to do it. I'm pleased that parental opinion seems to have swung in favour of vaccination. When my teen/near teens were babies there was a swing of public opinion (especially in London) away from vaccinating children because of the utterly irresponsible and discredited work of Andrew Wakefield.

[bawdy-nan]

I just found this news item from last year about an increase (slight, but worrying ) in Men W cases. http://www.bbc.co.uk/news/health-31869055

The Men B vaccine protects against Men W too.

The focus in the article is on teens (as was the focus of the expert on the Today programme earlier in the week) because they tend to spread and harbour the disease.

http://www.meningitis.org/menw - has good information. It must be very worrying to read about this disease and to know there is a vaccine that could protect your baby but not to be able to access it.

But there isn't any kind of epidemic and the risk remains low.

[Saffron]

>

> While this case is devastatingly tragic, I have

> huge concerns about putting pressure on our over

> stretched resources by public pressure via social

> media rather than strong evidence base proving

> efficacy.

The evidence for individual efficacy is quite clear. Bexsero is highly efficacious. While I appreciate the view that our NHS is overstretched, I disagree with the implication that this is in any way through public pressure or improper usage. The NHS is overstretched because it has been chronically (and now intentionally) underfunded. We're not going to save the NHS by letting the government pass us off with lower and lower standards. The UK is a wealthy country, and our politicians need collective extraction of political thumbs from ass.

[Saffron]

>

> But there isn't any kind of epidemic and the risk

> remains low.

Risk of contracting infection in relative terms is low. This risk of serious complications once infected is significant.

[bawdy-nan]

Of course. I'm not trying to say otherwise but there seems to be a real and genuinely held fear and panic that private vaccinations can't be got hold of. The reality is that this remains a very rare disease and your baby not being vaccinated doesn't mean that s/he's very likely to get the disease.

That's not at all to say that I don't support a vaccination programme. I just worry that there is an unnecessary panic.

Saffron Wrote:

-------------------------------------------------------

> >

> > But there isn't any kind of epidemic and the

> risk

> > remains low.

>

> Risk of contracting infection in relative terms is

> low. This risk of serious complications once

> infected is significant.

[midivydale]

Petition signed, what a truly heartbreaking read.

[devsdev]

An interesting analysis of making the Men B vaccine available to all - what do people think about making the provision of the vaccine to those outside the current regime means tested? We paid to have the vaccine privately and would do so again in a heartbeat. While there is not an epidemic of Men B, a 10% morbidity rate makes the vaccine a no-brainer to me (provided it can be afforded and is available, of course).

https://www.theguardian.com/science/occams-corner/2016/feb/22/making-the-meningitis-b-vaccine-available-for-all-children-makes-sense