Meningitis B Vaccine

Helen Grant Excerpts

Monday 25th April 2016 Westminster Hall

[Ben Howlett]

I thank my hon. Friend for his intervention; I am aware of his work in championing this cause, which he has done for a while. I very much hope that the Minister will consider that point when she makes her summation.

Although it is quite difficult for all of us as MPs to say this, throughout this debate we must of course keep at the back of our minds the fact that the NHS has finite resources. Everything that the NHS provides has an element of cost to it, and a life cost-benefit, too. However, along with many other Members, I worry that the long-term benefits of childhood vaccination and the life chances that vaccination can give to so many children are not being considered as much as they should be.

[Mrs Helen Grant (Maidstone and The Weald) (Con)]

I, too, congratulate my hon. Friend on leading this debate, and on speaking so passionately but in a measured way about this awful, awful disease. GlaxoSmithKline reported annual profits of £10.3 billion in 2013. Its website devotes several pages to corporate social responsibility. Does my hon. Friend agree that the company would show real leadership and great responsibility if it was prepared to relax further the price of the Bexsero vaccine?

[Ben Howlett]

I met GlaxoSmithKline and we had a conversation on the issue. There needs to be a long-term conversation in the here and now with GlaxoSmithKline about the pricing of a catch-up programme. We heard an awful lot of evidence about that, and JCVI needs to take it into consideration. As part of that, I lend my support to those campaigning for a full review of the cost-effectiveness methodology for immunisation programmes and procurements, or CEMIPP, its understanding of life benefit, and what it takes into consideration when making a judgment call on life benefit. That has a huge impact on how JCVI makes its decisions. I hope that a review would have a wider benefit for all those children who might be put at risk.

From September 2017, we will start to receive information from the current vaccination programme of babies under the age of one, and we can begin to assess the success of the new approach. In September 2016, we will get early preliminary data on the early introduction of the vaccine. That will hopefully help JCVI readdress its decision on extending the vaccine to those aged up to five. As the UK is the first country to use the meningitis B vaccine, it is understandably difficult to predict its effects when administered on a large scale. The data will be incredibly useful in helping to formulate a plan from September 2017, but it is important to remember that while we sit waiting for the data, children are contracting the disease, with life-changing consequences. Sadly, in some cases they are dying. Families going through that trauma will not be comforted by the fact that from 2017 we will have a better idea of what to do.

It is the opinion of many research organisations that while we wait for the data, we should prioritise protecting the most vulnerable from contracting the disease through a one-off catch-up programme for children under the age of five. They are the age group at the next highest risk of meningitis B infection. That one-off campaign would put many minds at ease and help the future eradication of the disease. The current vaccine only has a two-year shelf life, so it makes sense for the UK to use the vaccines while it can, to catch all those under the age of five. The evidence that we heard showed that the number of cases falls substantially after the age of five. While it is always uncomfortable to set a cut-off age, that would be a sensible one to introduce in the here and now.

At the heart of every successful immunisation campaign is uptake of the offer. Information shows that uptake for the under-ones is strong; that is unsurprising given what the papers are publishing, and the sad stories of families who have suffered the devastating effects of their child contracting the disease. We must ensure that uptake is continually high and does not negatively affect the uptake of any other vaccinations, especially if a one-off catch-up programme is undertaken.

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[Helen Whately (Faversham and Mid Kent) (Con)]

It is a pleasure to serve under your chairmanship, Mr Pritchard. I thank the hon. Member for Walsall North (Mr Winnick) for his powerful contribution and my hon. Friend the Member for Bath (Ben Howlett) for his comprehensive opening speech.

I want to start by paying tribute to my constituents, Neil and Jenny Burdett, who are with us this afternoon. Their two-year-old daughter, Faye, died on Valentine’s day this year after an 11-day battle against meningitis B. It is their determination that something good should come of their loss that has brought us all here today. More than 800,000 people signed the petition after they published a picture of their daughter gravely ill in hospital. They have shown incredible courage over the past few weeks and months since her death. They did not expect to receive this much attention; they just wanted to prevent other families from suffering as they have. The scale of the response to the petition shows how strongly people in this country feel about meningitis and the level of fear and concern that there is out there among parents.

I am proud that Britain was the first country in the world to vaccinate the most at-risk group of babies against meningitis B. In this debate, we should not overlook the important fact that the rest of the world is watching our vaccination programme and seeing how it fares. In the evidence sessions prior to this debate, we heard Britain’s immunisation programme described by one expert as

“the envy of the world”,

but that does not mean we cannot do more.

It feels cold-hearted to talk about cost-effectiveness, but we have to introduce that to the debate because we know that NHS resources are limited, and we must recognise that money spent on meningitis cannot be used to fight other diseases. After extensive research and the work that was done to make the case for the vaccination to be introduced, costs were included that would not normally be included in such a case for vaccination. For instance, litigation costs and health losses to family members were included. The JCVI, which makes the recommendations, concluded that it would be cost-effective to vaccinate babies up to 12 months, but not older children. If I understand it correctly, the Government are legally bound by that decision. I am sure the Minister will confirm this, but I do not know whether we can simply call for that decision to be overturned and an instant change in the programme introduced. But questions can be asked, particularly as a group is looking at the moment into how the cost-effectiveness calculation is carried out.

[Mrs Helen Grant]

Does my hon. Friend agree that we should not ignore things simply because they are hard to measure, especially in a situation such as this? Issues that have already been mentioned such as peace of mind and public preference are really important.

[Helen Whately]

I completely agree with my hon. Friend and neighbour in Maidstone. I know she has been contacted by many of her constituents about this issue. We need to ensure that the formula used to calculate whether the vaccine should be introduced includes things such as peace of mind and the level of fear about meningitis. It should also take into account the public preference for protecting children from illness.

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[Helen Whately]

The arguments I am putting forward should certainly be looked into, and it is timely to consider them now, because a working group is currently looking at the cost-effectiveness calculation. We need a real sense of urgency about the report on the calculation and it should be published as soon as possible. According to the conversations I have had, there seems to be uncertainty about how it is progressing and when we will be able to discuss the findings.

In the meantime, ever greater awareness of meningitis is important, particularly as it strikes so quickly. Parents need to trust their instincts if a child seems unusually ill, and it is critical for health professionals to listen to them. We have heard many tragic cases of children getting meningitis in which the parents had suspicions that their child was really sick. They have gone to hospital and seen doctors, but they have been sent home with instructions to give the child Calpol or something similar. We know that meningitis is very difficult to diagnose, but it is worrying that there is such variability in how children are treated when they turn up with potential symptoms.

[Mrs Helen Grant]

During the Select Committee’s evidence sessions it was suggested that information about the disease could be put in babies’ red books to raise parents’ awareness. Does my hon. Friend think that that is a good idea that should be considered?

[Helen Whately]

It should most certainly be considered. The Government should look into all possible avenues for raising awareness. Charities such as Meningitis Now are working very hard and have some excellent leaflets, but parents are often still not aware. I have three young children and I have worried about meningitis. I would look out for a rash, but through being involved in this petition I now know that the rash comes so late in the process that it can be too late by the time it is seen. Parents have to be ready to spot a whole host of other symptoms and, when they speak to doctors, to be really confident that they think their child is more sick than usual and that it does not feel like a case for just Calpol. Parents have an instinct. We need to encourage them to trust it, and health professionals need to encourage them to speak up about it.

I know that other colleagues want to speak, so I shall conclude my remarks. We need a much greater sense of urgency about the work on the cost-effectiveness of vaccination. Bearing in mind the points I have made about the discount rate and the value that society attributes to the life of a child, a case could be made for extending the vaccination programme to more children. Work should be done on how health professionals deal with possible cases of meningitis B. Whether or not the NICE guidance is still right, it is certainly confusing. We also need more transparency about doctors’ reactions to possible cases of meningitis B, because it is hard to see the difference in the data—we only have anecdotes about how doctors and others respond when they see a possible case.

The Government must do all they can to raise awareness. Whatever the outcome of the debate, I thank Neil and Jenny very much for all that they have done. The petition and debate have surely raised awareness of meningitis B throughout the country, which in itself will have saved lives.

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[Maggie Throup]

My hon. Friend is completely right that the speed of meningitis B is incredible. We heard various such stories in evidence. We must do everything we can to stop that.

The petition has already raised the profile of the disease, which will help to bust the myth that there is one meningitis and that vaccination against one strain makes a child immune to other strains. It is often difficult for parents to know what vaccines their children have had, when they had them, when their boosters are due, and what they are protected and not protected against. In evidence to the inquiry, we heard that irrespective of that confusion, medical professionals should and must trust parents’ instincts more. Despite the fact that the numerous vaccines for the different types of meningitis can be confusing, parents often have a sixth sense that tells them that something is really wrong. However, I understand that medical professionals are concerned that we are becoming more and more resistant to antibiotics, and that if a child is treated with antibiotics without clinical evidence, that resistance builds up even more. This is a complex subject with no easy answers.

The good news is that the vaccination programme has started and is almost one year in. This time next year, the majority of infants under two years old—the group that shows the greatest prevalence of meningitis B —will have been immunised. I am pleased that the Minister has asked the Joint Committee on Vaccination and Immunisation to reconsider the men B vaccination in the one to two-year-old age group. Given the potential community effect, I hope we will start to see the end of the disease.

There has been a lot of focus on meningitis B in recent months, but we must not lose sight of the impact of other types of meningitis or the fact that many other serious diseases can disproportionately affect infants, who cannot tell their parents or the doctor where they hurt or how poorly they feel. It was clear from the evidence that the Petitions Committee and the Health Committee took that a great deal of work still needs to be carried out to ensure that we get the best possible vaccines at the best possible price, and that they are as effective as possible. As is already happening, it is important to assess the outcomes of each and every infant who receives a men B vaccine. If possible, I would like to see data included from older children who have been immunised privately.

[Mrs Helen Grant]

In addition to vaccines, on which my hon. Friend is making a strong case, does she agree that we still need to do much more about prevention, and that the completion of the adolescent carriage study, which was recommended in June 2015, might be a good start? It would be helpful to hear from the Minister about progress on that.

[Maggie Throup]

My hon. Friend makes a good point, and I agree with her.

As we heard last week during the debate on funding for brain tumour research, no price can be put on anyone’s life, at any age. We must use all the evidence available and do whatever is necessary and appropriate to provide protection from meningitis and other potentially fatal conditions.

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[Peter Heaton-Jones (North Devon) (Con)]

It is a pleasure to serve under your chairmanship, Mr Pritchard. I congratulate my hon. Friend the Member for Bath (Ben Howlett) and the Petitions Committee on securing this incredibly important debate. I also pay tribute to the many families and charities whose tireless work has been instrumental in bringing us to this stage.

Two months ago, I was visited at my surgery in the village of Braunton in North Devon by my constituents Anthony and Jodie Cross. Mr and Mrs Cross told me about their daughters, Millie and Lydia, who both contracted meningitis B as young children. Millie was seven months old when she suffered from the disease. She went to hospital and was successfully treated, but on the day she returned home from hospital, her sister Lydia, who was nearly three, became ill. As the illness tragically developed, both of Lydia’s legs were badly damaged by septicaemia and had to be amputated below the knee.

That was nearly 12 years ago. Lydia has gone on to become a remarkable young woman and, with her family, a doughty and brave campaigner. Nothing illustrates that better than Lydia’s own words. She wrote an article for my local newspaper, the North Devon Journal, in May 2014, when she was just 13 years of age. Her words sum up better than I could what a remarkable young woman she is and how she has fought this disease so bravely. She says,

“I became a double below knee amputee when I was two due to meningitis and septicaemia. Sometimes having a disability is really hard but then other times it doesn’t really bother me. People may not realise how everyday things that they take for granted are much harder for me to do. I love all sports but I do get upset when I can’t participate because my legs really hurt, or I have sores where they’ve rubbed. I started to really enjoy blade running but due to infections and needing the bones trimmed in my legs, I haven’t been able to do it for months now. Hopefully, soon though, I can get back to training with the North Devon Athletics Club…I can then get my blades altered with new sockets and really train and focus on hopefully going to the next Paralympics in Rio, where I’d like to compete in the 100 metres (fingers crossed). I’m desperate to get back to doing it again. It’s really annoying when you have the determination to do something but your ‘disability’ stops you.

I’ve probably had about seven bone trimming operations and my most recent one was about seven weeks ago. It’s painful, but more annoying because I can’t wear my prosthetic legs for about six to eight weeks afterwards. I’m also unable to attend school—Braunton Academy—during this time so I do a lot of school work at home, but I really miss seeing all my friends. I’ve got an amazing group of friends. They treat me just as Lydia (their mad friend), not a girl who’s an amputee and I love that. I’m happier when people don’t treat me differently because I’m only missing the bottom part of my legs and I’m just the same as any other teenager (loud, annoying, always sleeping in and very untidy)…

Even though I’m only 13, I’ve been able to have the most amazing opportunities, that I’m sure I wouldn’t have had if I hadn’t become an amputee. But the one I’m most proud of is being the youngest patron for Help For Heroes, which is such a huge honour. I’ve met many of our wounded heroes who have lost far more than me… and…are my inspiration and friends. Even though I’m a teenager and an amputee which makes me ‘different’, I still consider myself very lucky and I am definitely very happy. I’ve got an amazing family and friends and I wouldn’t change anything about my life because that’s what makes me ‘me’.”

I thought it was worth reading that quite extraordinary article to the House at some length, because it sums up better than I could why we are here today.

Clearly, this is a matter of huge public interest and concern. When Mr and Mrs Cross came to see me, they told me about the growing petition seeking an extension of the men B vaccine to all children up to the age of 11. Today, that petition has in excess of 820,000 signatures—the most received by any petition since the new process was launched. I agree with hon. Members that it is good that we have changed our procedures in the House to allow such a petition to be debated in this way.

In considering the matter today, it is of course important to put the medical and scientific evidence front and centre. We should base our decision on that and that alone. Our decision must be evidence-based, which is why I agree wholeheartedly with my hon. Friend the Member for Bath that we should ask the JCVI to conduct a thorough review of the medical evidence. It is an important principle that Ministers should not make what amount to clinical decisions. Most Ministers—indeed, most MPs—are not scientists or doctors, although there are notable and extremely respected exceptions to that rule in the Chamber today, to whom we have listened very carefully indeed. We must take account of the expertise and advice of the JCVI, which is why the right approach is to thoroughly review the scientific and medical evidence.

This Government have shown that they are willing to act on this issue. As we have heard, a men B immunisation programme for infants under the age of one was introduced in September 2015, in line with the JCVI’s recommendations. In addition, the Government have requested that the JCVI research the evidence for extending the men B vaccination programme up to the age of two. Those are both welcome steps, and I hope they show that we are pushing on an at least partially open door and that the Government are willing to listen. I know that the Minister is listening today, and I look forward to hearing her summing-up.

The elephant in the room is the cost, which has been referred to, and it cannot be ignored. There is only so much money available in the Department of Health budget—I made that very point two weeks ago in a debate in the House on the need for compensation for those affected by the contaminated blood scandal.

[Mrs Helen Grant]

On cost, does my hon. Friend agree that the earliest possible safe introduction—“safe” being the important word—of a competing product to Bexsero could help patient access by reducing market prices and increasing availability?

[Peter Heaton-Jones]

I thank my hon. Friend for that intervention. I was much taken by comments that two of my hon. Friends made about cost. My hon. Friend the Member for Bury North (Mr Nuttall) made a powerful point in suggesting that we should be looking elsewhere for contributions towards the funding—it should come from those who, frankly, have decided to do harm to themselves rather than from small children who are in no way to blame for the position in which they find themselves. My hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) said—I wrote this down, because I thought it was telling—that we should consider very carefully the cost of not vaccinating, and I am sure the Minister will have taken that important point on board.

Cost is an issue to consider, which is why it is important that we look at the scientific evidence and carefully take on board what the experts from the JCVI and elsewhere say about this issue, as I know we will. We need to get this matter dealt with soon, because time is of the essence. Families are being affected as we speak, in the same tragic way as, in North Devon, Mr and Mrs Cross and their daughters Millie and Lydia have been. Their bravery, selflessness and hard work in pushing this issue forward, along with that of many other families and campaigners, is the reason why we are here today. I say to the Minister that we should listen to them, and we must not let them down.