Rare Diseases Strategy

Ben Howlett Excerpts

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered implementing the UK Strategy for Rare Diseases.

It is a pleasure to serve under your chairmanship, Mr Pritchard. Since taking over as chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions in 2015, I have had the great privilege of meeting and helping patients, children and their parents and families. To explain the enormity of the situation, one in 17 people will be affected by a rare disease at some point in their life. That equates to approximately 3.5 million people in the UK. There are currently between 6,000 and 8,000 rare diseases that have been identified, with patients affected at all ages. However, for those who have a known rare disease, the picture is slightly better than for those whose disease is not known. Many children and adults who I have met do not have a diagnosis. That is both deeply distressing and prevents adequate care from being provided fully. It results in a wide range of issues for patients and parents, who are often desperate to find the answers. Despite the scale of the issue, unfortunately a significant proportion of people with a rare, genetic or undiagnosed condition still do not have access to adequate care and treatment.

Given the enormity of the problem, the Government published their rare diseases strategy in 2013. It was heralded by the rare diseases and medical communities as a major breakthrough. While symptoms vary from condition to condition, there are a number of issues that patients and families affected by rare diseases face collectively—for example, the difficulties associated with accessing a timely and accurate diagnosis and the appropriate co-ordination of care. The publication of “The UK Strategy for Rare Diseases” should have heralded a new era of treatment and care for rare diseases patients in England, Scotland, Wales and Northern Ireland. Containing 51 commitments, the strategy aims to ensure that health and social care systems across the nations provide those living with rare conditions with the highest quality of evidence-based care and treatment, regardless of where they live in the UK.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this important issue to Westminster Hall for consideration. There are some 60 different types of muscular dystrophy, and 1,000 children and adults for every 1 million of the population are affected—70,000 people are affected by a muscle-wasting condition in the UK. Does he share my concern that our current strategy helps those who live a life of suffering because of those terrible diseases, and does he believe that we are offering the best, or enough, support to their carers at this time?

[Ben Howlett]

The hon. Gentleman and I have discussed rare diseases many times in this Chamber. I pay tribute to his work and that of his party on pushing this agenda in Northern Ireland; that also has implications for England. I agree with what he said and I will come on to evidence given to the all-party group—he mentioned a range of different things—including that of Muscular Dystrophy UK. I hope hon. Members find that report and the evidence that we refer to beneficial.

Without wishing to go into too much detail about the 51 recommendations, given the limited time that we have, the UK strategy aims to

“ensure no one gets left behind just because they have a rare disease”.

Features include setting a personal care plan for every patient, bringing together health and social care services; ensuring that patients, their families and carers have the information that they need and are listened to and consulted; and improving diagnosis and intervention and strengthening research to improve personalised approaches to healthcare for those with a rare disease.

The four countries in the UK were given a deadline of 2020 to implement the commitments. Although the Health Departments in the devolved nations have all published country-specific implementation plans to reflect their respective health services, structures and priorities, the Department of Health in England has not yet co-ordinated a plan for England.

At this point, I want to pause to thank all the charities and organisations across the country—including the Centre for Rare Diseases in Birmingham, the Birmingham children’s hospital, Lupus UK and Muscular Dystrophy UK—that have not only submitted evidence to our report, but done so in advance of this debate. Although I cannot name a million and one organisations, given the limited time, I—and, I think, the whole Chamber—wish to thank them for all their work on helping patients with rare, genetic and undiagnosed conditions.

As has been referred to, between October 2016 and January 2017, the all-party group on rare, genetic and undiagnosed conditions conducted an inquiry into the implementation of the UK strategy for rare diseases in England. It held three hearings with the Department of Health and its arm’s length bodies. More than 300 patients, family members, patient organisations, clinicians and industry representatives also submitted evidence. I thank all those who did so and all colleagues who took part in the evidence sessions, which were very interesting. Overall, the findings were that the strategy is working well and being implemented effectively in some areas. However, where the strategy is failing to be implemented, the problems it was designed to fix are in some cases getting worse or, at best, failing to get better. I will detail the findings of our report and ask the Minister a number of questions.

I was pleased with the response to a question I asked during Health questions last Tuesday. The Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon (Nicola Blackwood)—she is sadly unavailable for this debate, but I thank the Minister here today for stepping in at short notice—said that

“the UK strategy for rare diseases needs to be translated into an implementation plan”.—[Official Report, 21 March 2016; Vol. 623, c. 772.]

She also said that that was one of her prime commitments, and I was pleased to hear that from her at the Dispatch Box. However, the evidence we received for the report suggested that the Department of Health does not intend to develop an implementation plan and believes that NHS England should assume responsibility for doing that, so will the Minister confirm who will introduce the implementation plan, as promised last week?

NHS England also suggested in evidence that it does not intend to develop an implementation plan and has neither the remit nor the capacity to influence all 51 commitments in the strategy. Given that evidence, will the Minister commit to finding a way either for the Department of Health to deliver that agenda or for NHS England to be given direction to do so?

[Jim Shannon]

I thank the hon. Gentleman for being gracious in giving way. He will be aware of the neuromuscular complex care centre that was set up in Queen Square in London in September 2014. Will he encourage the Minister to visit that centre to see the benefits of co-ordinated, specialist, multidisciplinary care delivery that could be replicated across the United Kingdom of Great Britain and Northern Ireland?

[Ben Howlett]

I am sure that the Minister heard that and will pass it on to the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon.

We also saw evidence of poor communication between the organisations responsible for implementing individual commitments and other stakeholders involved in the strategy. What plans does the Minister have to better co-ordinate that communication? Many patients do not have access to the appropriate treatment or information about their condition, and the barriers to accessing information about a condition begin as soon as a diagnosis is made. Unfortunately, that leads to patient care continuing to be poorly co-ordinated.

I know that the Minister is a superb champion for those with rare diseases, and given the rare condition that the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, has, I hope that he provides more information about the Government’s commitment from last week. Hopefully they can commit to the Department of Health developing a comprehensive implementation plan that describes actions for its arm’s length bodies in particular. An implementation plan would offer direction to bodies involved in rare disease patients’ care, so that they can take action to improve the services that patients need. It would help patients to understand what progress is being made and to ask the right questions when it is not. It would also help to ensure that the needs of rare disease patients and their families are considered in decisions about patient care and access to treatments taken by bodies involved in the strategy.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

I congratulate the hon. Gentleman on securing this important debate. I welcome the recommendations in the strategy, although I am concerned that the recent announcement on capping NHS drug prices will influence implementation. Muscular Dystrophy UK has said that it would have a major impact on drugs for muscular dystrophy and other rare diseases. Newcastle is fortunate enough to be home to the John Walton Muscular Dystrophy Research Centre, but support could be improved further by providing specialist psychological support for people with muscle-wasting conditions. Does the hon. Gentleman agree that such support needs to be an integrated part of service provision for muscular dystrophy and other rare diseases?

--- Later in debate ---

[Ben Howlett]

I am really pleased that the hon. Lady raised that point, and I again pay tribute to the work done by Muscular Dystrophy UK to support patients. A key recommendation from our inquiry addressed the fact that part of the rare diseases strategy suggests that we should look at things on a much more integrated level. Patients are not just the medical condition that is attributed to them; they are also an entire person, who is part of a collective family. The rare diseases strategy has implications not just for those individuals, but for their families, carers and so on, across the board. We have seen a number of instances where the rare diseases strategy is simply not doing what it should have been doing, so I hope that in the Minister’s summation he will address taking a holistic approach, rather than just looking at the individual.

Further recommendations in the APPG report include that NHS England should be more proactive in implementing the commitments it can influence and dedicate more resources to improving the co-ordination of care, as the hon. Member for Newcastle upon Tyne Central (Chi Onwurah) said. It recommended that the Department of Health should improve its processes to both engage and communicate with stakeholders in the strategy. It also recommended that the Department of Health and the UK National Screening Committee should work together to establish robust programmes for identifying and preventing rare diseases, and that training for frontline medical staff on rare diseases and their impact on patients should become widely available and incentivised. The APPG is very much encouraged by the number of programmes that have been developed in response to the strategy that complement its aims, such as the 100,000 Genomes Project. Those programmes are amazing in themselves; none the less, those developments should not necessarily be considered as actions resulting from the UK strategy for rare diseases.

The time to act is now. I am sure that the Minister can guess my final point, which is about the changes to the National Institute for Health and Care Excellence’s highly specialised technologies programme. Commitment 13 of the strategy—lucky for some—is to ensure

“that there are appropriate procedures for evaluating the costs and benefits of treatments for patients.”

NICE’s recent decision to implement an upper funding threshold for its HST programme, made despite widespread condemnation from the rare diseases community, conflicts with that aim. The upper limit will vary according to the lifelong impact of the technology on the patient, varying from £100,000 per quality-adjusted life year for treatments that deliver less than 10 QALYs to the patient in their lifetime, up to a maximum of £300,000 for treatments that deliver more than 30 additional QALYs to the patient in their lifetime.

Unfortunately, the programme has been beset by delays. Only four medicines for the treatment of rare diseases have been evaluated since the HST programme began, averaging just one a year, despite a capacity for three treatments a year. The four medicines evaluated to date have been shown to bring tremendous value to the patients eligible to receive them. They are life-saving, life-lengthening treatments with the potential to lift the burden on whole families of a rare genetic condition.

[Greg Mulholland (Leeds North West) (LD)]

I thank the hon. Gentleman for securing this debate and for his leadership on the issue. On that particular point, does he agree that, as well as being a kick in the teeth for the rare and ultra-rare disease community—families, medical staff and charities—the plans make no sense? They have no bearing on the effectiveness of the drugs, which surely should be the basis for decisions, and they threaten new drugs that could change and save people’s lives, as well as some of the drugs that we joined families, medical staff and campaigners to get in the first place.

[Ben Howlett]

I thank the hon. Gentleman for his intervention and pay tribute to him for his work on rare diseases over the years. One of the first events I ever went to in Parliament was on rare diseases and was hosted by him. I could not have put it better myself. I will come later to my view that the issue needs to be thought about in a more timely way, potentially in a consultation and through some sort of implementation plan, which has been missing. It will impact not just people with muscular dystrophy, for example, but all those with the different conditions that he has championed in the past.

The four medicines evaluated to date have shown tremendous benefits to patients, and are life-saving and life-extending treatments. They are some of the most powerful and effective treatments for rare diseases ever seen, and the highly specialised technology evaluation committee recommended them for funding in England, but none of those life-changing medicines would have been able to raise the lower threshold significantly, and none would have been approved under the new regime.

If implemented, the plans will significantly affect patients with rare diseases and their ability to access life-changing treatment, at a time when we should be expanding access routes rather than limiting them further. The changes contradict the positive recommendations made in the accelerated access review and will restrict any attempt through the industrial strategy to position the UK as a centre for the development of innovative medicine. England already has extremely slow and limited access to treatments for rare genetic conditions; further narrowing of access routes will shut the door to innovation for our community of patients and families. It is unacceptable to implement such drastically damaging proposals just 18 days after they were announced. I therefore join the sector in calling for a pause in implementing the proposals and for a consultation and impact assessment.

[Chi Onwurah]

I thank the hon. Gentleman for his kindness in giving way once again. The John Walton Muscular Dystrophy Research Centre was named after a peer, now sadly deceased, who also founded Muscular Dystrophy UK and saw over a long lifetime the importance of the UK’s role in innovative science and research techniques, and its economic benefits to the research sector and, more widely, our international reputation. The changes proposed to NHS England will do much to undermine that.

[Ben Howlett]

I think the sector agrees on that point, from patient groups to the constituents whom the hon. Lady represents, as well as all the people with an undiagnosed condition who might access the services of that facility in future and many others throughout the country. The Government need to rethink the implementation and ultimately introduce an impact assessment on that basis.

I know that several hon. Members want to speak, so I will conclude by welcoming the commitment and dedication of this Minister and the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, in providing a solution to our long-standing problems with the implementation of the rare diseases strategy in England. Following the publication of our report, I hope that the Minister will be able to provide clarity on the questions that I have asked. The UK is doing superb work and leading internationally on rare diseases.

[Andrew Bingham (High Peak) (Con)]

I commend my hon. Friend on securing this important debate. My constituent Will Newman contacts me regularly about his granddaughter Ellie, who lives outside my constituency. He wanted me to come to this debate and thank my hon. Friend and the Minister for the work that they are doing. We think that rare diseases do not affect many people, but those whom they affect, they affect hugely. Does he, like me, take heart from the Prime Minister’s words in September? She said at Prime Minister’s questions:

“We are committed to ensuring that patients with rare conditions get access to the latest medicines”. —[Official Report, 7 September 2016; Vol. 614, c. 334.]

As she also said, we are taking the necessary steps to get those to them.

[Ben Howlett]

I thank my hon. Friend for that intervention. He is a great champion for his constituents. I share his hope in the Prime Minister’s commitment, made at an early stage in her office, and in a Minister who obviously understands rare diseases, having one herself, and who has made a clear personal commitment to resolve the issue. Having worked alongside the Department of Health for many years, I have been wanting to see this come to fruition. I am glad that we now have a leadership commitment in place to deliver it for the first time, at least in my memory of working alongside the NHS.

The UK is doing superb work and leading internationally on rare diseases. I hope that our all-party parliamentary group’s report will make a significant difference and help to steer the Department of Health to a place conducive to both the Minister’s requirements and ours. I look forward to hearing his response.

[Mark Pritchard (in the Chair)]

Before I call Margaret Ritchie, I will give some guidance. I am sure that hon. Members are aware that the spokesman for the Scottish National party will have five minutes, as will the shadow Minister. The Minister will have 10 minutes. This debate is due to finish at 5.30.

--- Later in debate ---

[Mr Dunne]

The right hon. Gentleman anticipates something that I will come to shortly in my speech, but we acknowledge that challenge and we recognise that there will continue to be concerns among patient groups and Members. I hope that my hon. Friend the Member for Bath in particular will understand that the proposed changes are intended to put in place a fairer, more transparent framework for the evaluation of technologies for very rare diseases as they are developed.

I want to respond specifically to the challenge posed by my hon. Friend and the shadow Minister on the real need to ensure that the commitments set out in the UK rare disease strategy are fully realised. It is right that last week in the House, my hon. Friend the Under-Secretary of State for Public Health and Innovation made a personal commitment to that effect in her response to my hon. Friend’s oral question, and I am happy to reiterate that commitment today. I can confirm to the House that I have agreed with the chief executive of NHS England that by the end of this year he will deliver an implementation plan for those of the 51 commitments of the UK strategy for rare diseases for which NHS England has lead responsibility. For those commitments that fall outside NHS England’s remit, the Department will work collaboratively across stakeholders to contribute to the implementation plan. I am sure my hon. Friend will agree that the development of that plan will be a significant step in the journey.

[Ben Howlett]

indicated assent.

[Mr Dunne]

I welcome my hon. Friend’s acknowledgement of that. We are absolutely clear that we need to ensure that the proposals are used to drive real action and make tangible improvements for patients affected by rare diseases. It is not only about having a plan but about ensuring that the plan has effect for sufferers of these conditions. That is why we have recently reconfigured and strengthened the governance arrangements and formed a more streamlined UK rare disease policy board to monitor and co-ordinate progress in implementing the strategy.

In addition, we have strengthened the patient voice with the appointment of two patient representatives to the policy board. To make our work more transparent, a broad online stakeholder forum will operate in collaboration with the policy board to allow a more meaningful dialogue with the rare disease community. The rare disease policy board will be supported by clearly defined task and finish groups to examine progress objectively and to consider in particular the diagnostic odyssey that my hon. Friend referred to, which can be so frustrating for those who are still unable to determine their condition. That issue is a considerable worry for anyone affected by a rare disease, who will be familiar with the problem.

I will conclude slightly ahead of schedule by confirming that the lives of patients with rare diseases can be improved only by means of concerted and co-ordinated action. I take this opportunity to reaffirm the Government’s aims to drive real improvements in the care and treatment of those affected by rare diseases by working with stakeholders to deliver the standard of care and treatment that all patients deserve and to ensure that the implementation plan for England is delivered by the end of this year.

[Ben Howlett]

I will be brief. I thank the Minister for his response. The news about the implementation plan being brought in before the end of the year is incredibly welcome, and I thank him for taking leadership on that. That is a message to go back to my hon. Friend the Member for Oxford West and Abingdon (Nicola Blackwood) while she is with the Prime Minister. I appreciate that it is potentially a lot nicer to be with the Prime Minister than here. Nevertheless, the Government’s position is welcome.

I thank all Members for contributing to the debate. I particularly thank the hon. Members for South Down (Ms Ritchie), for Cambridge (Daniel Zeichner), for Linlithgow and East Falkirk (Martyn Day) and for Washington and Sunderland West (Mrs Hodgson) for their supportive comments. The time is now. The all-party parliamentary group, working with Genetic Alliance UK and Rare Disease UK, which provide the secretariat to the APPG, will be monitoring the progress that the Minister, the Department and NHS England make over the next few months. Progress will be incredibly welcome. The Minister referred to the highly specialised technology change and explained how the consultation has operated, and I appreciate that, but I reiterate that there is concern within the sector. The Ministers may be able to reassure people that that concern is being taken into consideration.

For a long time I have said that the accelerated access to medicines review might be a good pathway for rare diseases in the future. The work that the former Minister for Life Sciences, my hon. Friend the Member for Mid Norfolk (George Freeman)—he is now chair of the Prime Minister’s policy unit—has done and continues to do will be incredibly important. Thank you, Mr Pritchard, for chairing the debate. I thank the Minister for updating the House, and I also thank Members and all those who gave evidence and support to the APPG in its inquiry.

Question put and agreed to.

Resolved,

That this House has considered implementing the UK Strategy for Rare Diseases.

Oral Answers to Questions

Ben Howlett Excerpts

Tuesday 21st March 2017 Commons Chamber

[Mr Hunt]

With great respect to the hon. Gentleman, what was secured in the Budget was £2 billion for social care, which is £2 billion more than his party was promising at the last election.

[Ben Howlett (Bath) (Con)]

T6. Following the publication of the report of the all-party parliamentary group on rare, genetic and undiagnosed conditions on the UK rare diseases strategy, what plans does the Minister have to introduce an implementation plan for NHS England?

[Nicola Blackwood]

Frist, let me pay tribute to my hon. Friend for his leadership of the APPG on rare diseases. I am sure he will join me in feeling proud that the UK is a recognised leader in research, treatment and care for rare diseases in particular. We are at the forefront of the genomics revolution. He is right that the UK strategy for rare diseases needs to be translated into an implementation plan, and that is one of my personal commitments.

Mental Health and NHS Performance

Ben Howlett Excerpts

Monday 9th January 2017 Commons Chamber

[Mr Hunt]

I find these questions about funding curious coming from members of the Labour party, as, had we followed its plans, we would be spending £1.3 billion less on the NHS this year than what the NHS is actually getting, and I just say to them that the reason why we are able to spend that extra money on the NHS is that we know how to run the economy.

[Ben Howlett (Bath) (Con)]

All too often, mental health patients have wondered whether this issue has enough leadership, and I am incredibly pleased that the Prime Minister made one of her earlier speeches on this issue, but while no one in this House would oppose an extra £1.4 billion being invested over the course of this Parliament, may I echo the words of the chief executive of Mind that the proof will be in the impact this investment has on patients’ day-to-day experiences? So will the Secretary of State ask the relevant Minister to meet me to discuss plans to build a new psychiatric and dementia care unit at Bath, to service the whole of the south-west?

[Mr Hunt]

I am happy, on my hon. Friend’s behalf, to ask the Minister responsible to meet him to discuss that psychiatric unit. Of course the proof of the pudding is in the eating, but this is the first time that I can remember that a Prime Minister has made her first major speech on the NHS about mental health and indeed talked, on the steps of Downing Street as she arrived, about the importance of sorting out mental health. That is a sign of the commitment coming right from the top.

Accelerated Access Review

Ben Howlett Excerpts

Tuesday 13th December 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I am pleased to speak in today’s debate and join others in congratulating the hon. Member for Dudley North (Ian Austin) on securing it. I join him in congratulating the Cystic Fibrosis Trust on its work, as well as other cystic fibrosis organisations and charities across the rest of the UK on theirs. As chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I take a particular interest in this subject and in particular how the approach taken by NICE when deciding on funding for drugs is unsuitable for drugs aimed at rare or genetic conditions.

As other Members have said, Orkambi is a particularly interesting development and is part of a new wave of gene-specific precision medicine. It tackles the underlying causes of cystic fibrosis—in this case, the defective CFTR gene—rather than simply treating the symptoms. We should be embracing this new technology and creating appropriate ways for these drugs to be approved and funded, so as not to discriminate against those with a rare or genetic disease. There may be fewer people who suffer from a rare or genetic condition, but I urge the Minister to do all he can to improve their chances. I know that he is a passionate advocate for that particular case.

The NICE process of recommendation understandably relies on data to commission the use of drugs on the NHS. However, the process is currently very rigid, which works against new, often life-changing drugs that only have trial data as evidence. That is exactly what happened with Orkambi, which only had data from a 24-week clinical trial when making its application—similar to a range of other drugs available on the market at the moment—yet evidence shows that it brings significant clinical benefits, as well as wider benefits to society, for people with cystic fibrosis and their carers.

It is not just the lack of available data that discriminates against drugs aimed at genetic and rare conditions. The NICE single technology appraisal process does not adequately reflect the potential benefits of the medicine in protecting future health deterioration or the wider holistic and societal benefits. Its thresholds for cost-effectiveness also work against those with a rare disease. Fundamentally, the diseases are rare by nature and therefore there are only a small number of eligible patients. That should not be a barrier, and we all agree that we need a system that can help those patients.

In short, the accelerated access review, which was brought about after the hard work of my hon. Friend the Member for Mid Norfolk (George Freeman), potentially holds the answers to the problems that currently beset the NICE system. It recognises that the innovative nature of new medicines means that they are unlikely to be approved through the current methods and proposes new guidelines. The new approach will help to ensure that the UK sets itself up as the best possible place to develop new drugs and, I hope, for Orkambi. The Minister might not be able to give me the answer now, but I would like him to write to me on the predicted result of the reduction of the drug spend through NHS England—as we recently heard in a series of evidence sessions held by the APPG for rare diseases—from 7% to about 3.5%, and on how the accelerated access review budget will be increased to compensate.

The Government are set to respond to the recommendations shortly. I hope that their proposal will benefit drugs such as Orkambi that are at the forefront of life science innovation because they treat the underlying causes of the disease, not just the symptoms, thus resulting in a lifetime of health and wellbeing benefits and savings.

[Fiona Mactaggart (Slough) (Lab)]

The hon. Gentleman is right to focus on the development of these drugs. My concern is not just that patients are denied access to life-changing drugs, but that our pharmaceutical industry finds this a frustrating country in which to develop new drugs and to ensure that they are available to people such as the constituents of my hon. Friend the Member for Dudley North (Ian Austin).

[Ben Howlett]

The right hon. Lady is quite right that pharmaceutical companies, in the rare diseases space in particular, find this country a very frustrating place to come to. The message that we are going to support the industry to bring drugs to market here is not loud and clear, and there have been a range of delays and process errors. I know that the Minister and previous Ministers have tried to address this issue, but it has been a very slow, difficult and arduous process, because the message has not been heard loudly and clearly enough.

The difficulty that Orkambi is currently facing in getting funded perfectly displays the problems faced by many other innovative drugs that aim to treat rare or genetic diseases. As chair of the APPG, I get contacted by many people across the country who are desperate to see potentially life-changing drugs approved by NICE. There is a clear deficiency in the process for this type of drug, so I hope that the Minister can today announce a pilot process to show that the UK is committed to leading in this field and providing hope for all those sufferers of rare and genetic diseases.

[Sir Alan Meale (in the Chair)]

Before we proceed, I say to Members that we are running very close to the line now. A number of Members have taken the trouble to write in and I need to try to call them all, so I ask each Member to restrict whatever they bring up to a maximum of five minutes, or hopefully less.

Child Cancer

Ben Howlett Excerpts

Monday 28th November 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 162934 relating to child cancer.

It is a pleasure to serve under your chairmanship today, Mr Davies. I thank all right hon. and hon. Members present for attending.

The debate arises from an online petition on child cancer started by a couple whose child, Poppy-Mai, sadly passed away after a battle with a very rare cancer. She contracted a progressive and aggressive malignant rhabdoid tumour, which progressed into a metastatic brain tumour. The petition is entitled:

“Force child cancer to the forefront of the NHS and government funding schemes”,

and it calls for “more funding” to be made

“available in the fight against child cancer.”

It also calls for more to be done

“to spread awareness…more genetic testing and research. Child cancer needs to be at the forefront of our minds.”

At this point, it is important that I clarify to the petitioners that, as a member of the Petitions Committee, my job today is to lead the debate and not to take a position on behalf of the Committee. I promise to take as many interventions from as many Members as possible, to involve them in the debate.

One of the charities that got in touch with me before this debate was Christopher’s Smile, whose motto—“coz kids get cancer too”—shows the sad reality of childhood cancer. There is something even sadder when cancer—in fact, any disease—attacks children: they have the rest of their life ahead of them and cannot be said to have caused or encouraged cancer themselves by their lifestyle choices. However, there is a smaller national profile for childhood cancer, with less attention focused on the important signs to look out for and the ways to avoid it, than for cancers that usually affect adults, even though childhood cancer is the biggest killer by disease of children in the western world.

Child cancer recently hit the headlines when the singer Michael Bublé announced that he was taking a break from performing while his three-year-old son undergoes treatment for liver cancer. I am sure that all Members here today will join me in sending our best wishes to Michael, Noah and their family at this very upsetting time. What they are going through at the moment is unthinkable and there are many families across the UK in exactly the same position, with parents feeling helpless while wanting to do everything possible to protect their children from this dreadful and cruel disease.

Unfortunately, that sad story shows that cancer can strike anyone at any time. More needs to be done to educate all of us on what signs to look out for, so that cancer can be caught early and there is a higher chance of survival. I thank the Government for their response to the petition. I am sure that Members from all parties in the House support the Government’s ambition to lead the world in fighting cancer. More attention needs to be given to the ways that we can become the world leader, so that we can see the number of cancer diagnoses fall and the number of cancer survivors increase.

The cancer taskforce’s five-year plan to achieve world-class cancer outcomes includes many recommendations on cancer in children, including

“a possible review of CTYA services”—

that is, services for children, teenagers and young adults—

“to provide improved integrated care”,

and to seek

“consent from children and young people for their data and tissue collection for use in future research studies and development of services and…ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.”

All these things are crucial to beating childhood cancer and improving the care received by those who contract the disease.

On multiple occasions, charities have raised with me and the Petitions Committee the importance of getting real data to help with future developments in a range of different diseases. I chair the all-party group on rare, genetic and undiagnosed conditions, so I know that this problem does not only affect childhood cancers; it also affects other areas of the health debate. It is potentially even more important when it comes to child cancer, because thankfully child cancer is rare, relative to the population. I urge the Government to look carefully at ways in which researchers can gain access to those important, albeit anonymised data as a priority.

I was pleased to read in the Government’s response to the petition their understanding that

“a cancer diagnosis can have devastating consequences for the lives of young people and their families”,

and that the Department of Health recognises that the most important thing is that

“Care should be built around what matters to the young person and their family”.

The Department is

“working closely with cancer charities to ensure patients get the support they need during and after their treatment.”

However, more can still be done to ensure that when a cancer diagnosis is received—especially if, sadly, it is a terminal diagnosis—the child is made as comfortable as possible and is able to spend time with people who love them.

[Mark Tami (Alyn and Deeside) (Lab)]

As a parent who went through this when my son was nine, I know that the news is devastating for parents. What happens to the family around the child and the level of support that is provided are also important. I was an MP at the time, with a good salary, but a lot of people do not have that level of income, or perhaps they do not have other family members to come round. We really need to put in extra support, and not months afterwards but straight away, when parents actually get that news.

[Ben Howlett]

I agree with the hon. Gentleman. There is a multitude of different organisations out there to help at the point when a diagnosis is received, but of course that should not distract from the fact that the Government also need to look at early intervention to support the family of a child when the child receives a diagnosis. I hope that the Minister will mention that when responding to the debate.

I am the MP for Bath, which is in the south-west, and I pay personal tribute to the great work done by the Children’s Hospice South West, which serves my constituency and others across the entire region. The hospice’s dedication and the service it provides in the final days of a child’s life is tremendous. I thank the hospice on behalf of my constituents for all the work that it does.

Research and funding are obviously critical. Evidence has been submitted throughout the course of the discussions around this issue. I am sure that all colleagues in this House will welcome the fact that the number of children dying from cancer each year in the UK has fallen in the last 20 years, but one child dying is obviously far too many. Research has been at the heart of the progress made, helping more children to survive cancer than ever before, but as I said, childhood cancer remains the biggest killer by disease of children in the western world.

[Seema Kennedy (South Ribble) (Con)]

My hon. Friend rightly mentions research and progress. I intervene briefly to speak about my constituent, Paula Adair, whose daughter, Katy Holmes, died in 2012 of a diffuse pontine glioma. Paula made the point to me that Katy received the same treatment that Neil Armstrong’s daughter had received nearly 40 years before, showing that there had not been adequate progress on these terrible diseases.

[Ben Howlett]

I thank my hon. Friend for her intervention, and I pay tribute to her and to other colleagues for championing cases such as that one in their work as constituency MPs. She makes an incredibly important point. Months ago, I took part in another Petitions Committee debate in relation to brain tumours and it is quite clear to me that the rarer a cancer is, the less attention is paid to the funding of research to find the underlying causes. There has been a change during the last few months and years, with more attention focused on some of the rarer cancers, but there is still a long way to go. I hope that some of the major progress made on the more common cancers, such as prostate cancer and breast cancer, and the evidence gathered can be applied to some of the rarer cancers as medical technology improves.

Approximately 3,800 children and young people in the UK are diagnosed with cancer each year, and approximately 260 children in the UK die each year from cancer before their 15th birthday. For those who survive, there are often lifelong treatment-related health problems to be dealt with. In addition, as the hon. Member for Alyn and Deeside (Mark Tami) made clear, there are also the ongoing costs in relation to the treatment and support for the families as well throughout the entire process. To be frank, we must do an awful lot more.

[Mark Tami]

Does the hon. Gentleman agree that it is not only the physical side of the illness that we must address, but what happens to children if they get through their illness—hopefully they do—including all the questions they will have, such as “Why has this happened to me?” and “Why do I look different?”, their reintegration into school and their anger? We might put a lot of money into addressing the illness itself, but we put very little into looking after the child afterwards. It is no accident that children who have had cancer have a higher suicide rate than those who have not.

[Ben Howlett]

I pay tribute to the work the hon. Gentleman has been doing in this area and I completely agree with him. The health benefit analysis that is at the heart of the Department of Health in a number of areas is under review—it is constantly under review—but it needs a much more holistic understanding of the costs, not just in economic terms but in terms of societal issues, including mental health and ongoing support for a child’s family for, hopefully, the rest of their life.

I welcome the Government’s focus on improving earlier diagnosis, as it makes it more likely that patients, including children with cancer, will receive effective treatment. Additionally, it is good news that the Government have committed to implementing all the recommendations of the cancer taskforce, including that by 2020 everyone referred with suspected cancer will receive either a definitive diagnosis or the all-clear within four weeks.

[Michael Dugher (Barnsley East) (Lab)]

I thank the hon. Gentleman for setting out the arguments so well. Will he join me in paying tribute to the many good organisations and charities in the field, in particular Be Child Cancer Aware, which does fantastic work on the need for early diagnosis, gives wonderful support to families and runs campaigns, including in memory of my nephew, Oliver Shaw, who died of leukaemia in 2011?

[Ben Howlett]

I will come on to awareness later. I join the hon. Gentleman in congratulating that charity and the others around the country that do huge amounts of work, often with limited resources in these difficult times.

Returning to early diagnosis, I wish to ask the Minister about the four-week all-clear or definitive diagnosis period and whether it is being performance managed and adhered to. I am sure it is. I welcome the good news that NHS England has the funding necessary to improve cancer services over the next five years, including up to £300 million by 2020 to support earlier diagnosis of cancer, and £10 billion of real-terms increases in NHS funding by 2020-21. I also welcome the recommendations in the taskforce report that give direction on where the funds should be targeted. When it comes to NHS England, performance management is crucial, just as it is in the rare diseases space. We need to know that funding will be spent on the ground on the people who really need support, particularly children who are suffering on an almost daily basis. Campaigners rightly point out that significant progress is still to be made on childhood cancer. Will the Minister confirm that the work undertaken by NHS England will routinely be performance managed on the basis of what has been said by many organisations in the sector?

Childhood cancer is, thankfully, not common, with children accounting for only 1% of cancer patients. Unfortunately, that constitutes a tiny market for pharmaceutical companies, so there are often far too few incentives for child drug development. The pharmaceutical industry generally targets the largest markets for its research and development and it wants its latest drugs to go into front-line use as quickly as possible, to gain maximum benefit from the patent protection. Although many of the genetic abnormalities in childhood cancers also occur in adults and both adults and children can be treated with the same drugs, paediatric drug development trials and availability always lag many years behind. I urge the Government to do more to encourage pharmaceutical companies to invest in research and development for life-saving paediatric drug development. Will the Minister highlight what she will do to encourage NHS Improvement to focus on that market?

Access to cross-border trials is particularly important for rare diseases such as childhood cancers, as there are often not enough cases in a single country to make a trial viable. The European Union’s new clinical trials regulation will come into force in October 2018, and will hopefully make it much easier to carry out cross-border trials, by requiring that a single application be submitted to a central point rather than one in every country. I seriously ask the Government to consider how we can remain party to that system as we exit the European Union.

The overall survival rate for children with cancer is 82% in England and Wales, but the rate varies considerably according to the different types of cancer, and by age and gender. One thing we all know about the chances of survival is that the earlier cancer is caught the more likely it is to be beaten, and the same applies to cancer in children, so I will now talk about the importance of awareness campaigns.

Awareness campaigns can be aimed at and useful to a wide variety of people. It is not just parents and family members who can benefit from improved campaigns. One of the most important things the health system can do is give a child a diagnosis as early as possible, with swift treatment where necessary. However, CLIC Sargent, the childhood cancer charity, states that parents often explain that their journey to diagnosis was far from straightforward. For example, children are disproportionately diagnosed through emergency medical care, with 53% of children aged nought to 14 diagnosed through A&E or emergency referral compared with 20% of adults. There must be something causing that large disparity. I think two issues need to be addressed.

First, there are some excellent national awareness campaigns for many of the more common adult cancers. This month is dedicated to prostate and testicular cancer for example, not just to raise funds but to highlight what men should be looking out for. There are also multiple campaigns encouraging women to regularly check their breasts and to encourage their friends and family to do so. Those campaigns must be applauded and they should be learned from and replicated for other cancers, including childhood ones. If parents are aware of and sensitive to the various early warning signs, we might see a decrease in the number of emergency diagnoses and an increase in diagnosis by GPs, who often know a child’s history far better.

Secondly, GPs need to be educated about some of the less well known symptoms, so that they can be alert when examining children. CLIC Sargent is working with the Teenage Cancer Trust and the Royal College of General Practitioners to produce an e-learning module on children and young people’s cancers for GPs across the country. I thank those bodies for their work and I encourage other organisations to collaborate similarly, to get the crucial awareness messages out there. I am sure that the Minister agrees that continuing professional development is vital for GPs and all medical professionals. If GPs are more aware and more ready to carry out further tests, we might see an improvement in childhood cancer survival.

Last year, the National Institute for Health and Care Excellence addressed non-site-specific symptoms of concern for children and young people, recommending that GPs take into account the insight and knowledge of parents and carers when considering making a referral for a suspected cancer. NICE noted that more lives could be saved each year in England if GPs followed the new guidelines, which encourage GPs to think of cancer sooner and lower the referral threshold. I ask the Government to support some of the excellent childhood cancer campaigns and charities in their aim to achieve national coverage for awareness campaigns and to reach parents and doctors through a variety of means.

Every year in the UK about 3,800 children and young people are diagnosed with cancer, 1,600 of whom are aged nought to 14. For young people, when the doctor says “cancer” normal life stops. It is a devastating experience for the whole family. The petition highlights the huge impact that cancer has on families across the country and the need for more investment, research and awareness. I urge the Government to consider how we can increase engagement with charities to encourage awareness campaigns that garner national attention, develop greater incentives to increase research and development into lifesaving paediatric drugs, and improve early diagnosis for child cancer patients.

I thank colleagues for their attendance today and in particular I thank the petitioners for highlighting this incredibly important issue. I look forward to hearing the comments of other Members and the Minister.

--- Later in debate ---

[Nicola Blackwood]

The shadow Minister has made some important points about the EU, as have a number of colleagues, and I will come on to them before I finish. First, let me complete my remarks on the amount of funding that we have put into research, because it is important that it is seen as a package. Less than two weeks ago, the Government announced a further £112 million of funding to support the skilled personnel and cutting-edge facilities needed to help at the forefront of clinical research—experimental clinical research in particular, including research into child cancers. I visited one of those facilities myself, and they are an important aspect of the research we are supporting. The Chancellor announced £2 billion additional funding per year for research and development by 2020-21 in the autumn statement, including for scientific research at universities and businesses. That is another part of the picture.

The hon. Member for Birmingham, Selly Oak, who is not in his place, spoke of the importance of precision cancer medicines. The Government agree, which is why we have funded the 100,000 genomes project, to diagnose, treat and prevent rare disease and cancer, including childhood cancers. The Government have invested hundreds of millions of pounds in that project to date and it is already making a difference—the first children with rare diseases have received diagnoses through the project at Great Ormond Street Hospital. The project promises to offer a genuine step-change in diagnosis and precision treatment, which is encouraging.

[Ben Howlett]

The Minister is being very generous with her time. I am pleased about the rare diseases aspect of what she has just mentioned. However, when engagement exercises are being undertaken with charities, it is often the case that the larger cohorts are focused on. Will she give assurances that in those engagement exercises with charities, some of the rarer cancers will also be a focus?

--- Later in debate ---

[Ben Howlett]

I thank hon. Members from across the House for their contributions today, including my hon. Friend the Member for North Thanet (Sir Roger Gale) and the hon. Members for Birmingham, Selly Oak (Steve McCabe), for Inverclyde (Ronnie Cowan), for Ilford North (Wes Streeting) and for Bristol West (Thangam Debbonaire)—I do not think I have missed anyone out. I also thank hon. Members for their interventions and the Front Benchers from the three main parties. The thoughtful words from the Minister set out what an inspiring campaign many colleagues have seen from their work as constituency MPs and from the 115,000 petitioners, in particular Poppy-Mai Barnard’s family.

Members of the Petitions Committee get an opportunity to speak in this Chamber on a regular basis about some of the really important issues that matter deeply to our constituents. Having a systematic way for constituents to engage with this place in relation to child cancer, brain tumours, meningitis B and a range of other issues has made a big difference. Their continued involvement is incredibly appreciated and has given Members of Parliament an opportunity to shout about some of the great work that local charities, national charities and our constituents are doing to improve awareness and tackle a disgraceful disease. We have heard an awful lot about research in diagnosis, and about awareness, support for families and palliative care.

While I have never had the misfortune of anyone in my family suffering from a childhood cancer, my thoughts and prayers are with those who have. Ultimately, with 260 children dying from cancer every year, I am sure all of us would love a reduction of that number to zero. One death is far too many. I thank all those who contributed to the debate, and give huge thanks to those who led and submitted the petition.

Question put and agreed to.

Resolved,

That this House has considered e-petition 162934 relating to child cancer.

NHS Sustainability and Transformation Plans

Ben Howlett Excerpts

Wednesday 14th September 2016 Commons Chamber

[Ben Howlett (Bath) (Con)]

It is a pleasure to follow some very hard-working and committed campaigners on health issues, particularly my hon. Friend the Member for Stafford (Jeremy Lefroy), who has done so much to champion the NHS. I join him in thanking all NHS staff members across the country, who work incredibly hard day in, day out. A lot of them do not get the thanks they deserve.

Compared with some Members, I have had an very good range of consultation exercises with my clinical commissioning group on the STPs. The group has engaged with MPs not just in Bath and north-east Somerset, where the Royal United hospital is located, but across Wiltshire and Swindon. If the ministerial team are looking at examples of best practice, I am more than happy to host them and the group on STPs in Bath and north-east Somerset to show them the work being done to engage thoroughly across the entire patch.

I am incredibly pleased to speak in today’s debate, because Bath has a range of very difficult niche concerns about healthcare—not just the ageing population, but the fact that in a city such as Bath we have not only one in five children living in poverty, but some of the highest levels of alcohol and substance misuse in the south-west, a fact which is often glossed over. The STPs will provide an excellent framework for tackling some of these issues, which have not necessarily been tackled previously. I am also incredibly pleased that the Minister will look at the idea of changing the funding formula in the NHS so that people who need more should get more. Unfortunately, the NHS has not necessarily been able to provide the funding that it absolutely needs to carry out reforms.

I fear that huge misconceptions and a lot of scaremongering have arisen from this debate. Unfortunately, that is harming what is likely to be an incredibly positive policy, which has been required for many years. In Bath, we want to work with Swindon and Wiltshire through the new sustainability and transformation plans, as well as with neighbours in other areas as well. Will this be a constantly evolving project, because as devolution is created throughout the UK, the plans will sometimes need to be changed to make sure they fit the new footprint as devolution comes into force?

In such debates, it is incredibly important to stand up for what one’s clinical commissioning group is asking for. I would be failing it if I did not say that, although this year the finances have been okay, the projected finances for next year will be incredibly difficult. We need funding to match the plans. I think everyone in the House agrees that we must ensure that funding matches the requirements of local communities.

NHS Commissioning (Pre-Exposure Prophylaxis)

Ben Howlett Excerpts

Tuesday 7th June 2016 Commons Chamber

[Jane Ellison]

I have been very clear about NHS England’s position, and I have said that no decision has yet been made about commissioning. I do not accept the hon. Lady’s challenge about spending on public health. We have committed to spend £16 billion over the next five years on the public health grant. In addition to that, we have committed more than £1 billion this year alone in the section 7A agreement and £300 million on vaccines that we buy in the Department of Health, plus system-wide leadership through things such as the sugary drinks levy and the forthcoming childhood obesity strategy. All in all, this is the radical upgrade in prevention that was talked about in the NHS “Five Year Forward View”.

[Ben Howlett (Bath) (Con)]

I join my hon. Friend the Member for Finchley and Golders Green (Mike Freer) in thanking the Minister for her work, and in particular for engaging with the LGBT community. I know that they are quite concerned about last week’s statement by NHS England. Given the disappointing outcome of NHS England’s PrEP review and the fact that we have the worst of all scenarios, which is effectively a legal challenge, will the Minister commit to finding a way round the NHS England decision while a new trial is under way? Does she agree that the accelerated medicines pathway could provide a perfect platform for bypassing the frustrating system that we are talking about?

[Jane Ellison]

I will reflect on the latter point with my hon. Friend the Minister for Life Sciences, who is sitting alongside me. I have made clear the NHS position on commissioning. The measures that I have announced today—the NICE evidence review and the trial that we are planning for, which we will move forward with later in the year—are all part of understanding how we get to the right decision. It is not something on which I will make a snap decision now, but we have set out a process by which we can get to that point.

Junior Doctors Contract

Ben Howlett Excerpts

Thursday 19th May 2016 Commons Chamber

[Mr Hunt]

If the hon. Gentleman had listened to some of the things that I have said, he would have heard me say repeatedly that I do not think that that dichotomy exists. As he says, it is a false dichotomy because, in the end, what is right for patients is also right for doctors. The thing that demoralises doctors, nurses and everyone working in our hospitals in different parts of the NHS is when they are not able to give the care that they want or that they think is appropriate to the patients in front of them. That is why hospitals that have moved closest towards seven-day services are also some of the hospitals with the highest levels of morale in the NHS. He is right that it is a false dichotomy and that we need to do both together.

[Ben Howlett (Bath) (Con)]

As the Secretary of State knows, my brother and his wife were junior doctors when they made the decision to move to New Zealand a long while ago because of the long-standing cultural problems within the NHS. They will be very pleased indeed about the announcement yesterday about couples potentially being able to work together in hospitals. I have a question for the Secretary of State from my mother. She wants to know what he can do now to encourage my brother, his wife and their friends back into the NHS.

[Mr Hunt]

Let me say to my hon. Friend’s mother that I hope that the message of this new agreement will go right the way around the world. Any doctors who have moved to New Zealand and Australia are always welcome to come back. The thing that must unite this Government and the good doctors who work, or have worked, in the NHS is our commitment to make NHS care the safest and the best in the world. We had a terrible shock with what happened at Mid Staffs, but we are using that as a moment of decisive change in the NHS, and we are well on our way to higher standards of care than are available in many other countries.

Meningitis B Vaccine

Ben Howlett Excerpts

Monday 25th April 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 108072 relating to the meningitis B vaccine.

As ever, it is a great pleasure to serve under your chairmanship, Mr Pritchard, and it is also a pleasure to see such a high level of interest in this debate from colleagues from all parts of the House. The petition that sparked this debate gathered over 820,000 signatures and received widespread media attention. Someone from every one of our 650 constituencies signed this petition; that shows just how horrifying meningitis B is, and gives a very strong indication of the level of public support for efforts to eradicate this disease.

Before today’s debate, the Petitions Committee and the Health Committee undertook joint oral evidence sessions, during which we heard from families who have been affected by meningitis B, as well as from charities and experts in the field. Some of those families are here today; I thank them for taking the time to share their stories with us. I also thank the charities that came along to the evidence sessions. The evidence that we heard will undoubtedly inform today’s very important debate.

Meningitis B is an evil disease that kills or maims hundreds of children in the UK every year. Finding out that their child has contracted this dreadful disease is clearly one of the worst things that can ever happen to a parent. We need to eradicate it as soon as possible, and I hope that this debate and the attention that it brings to the topic will lead to a new action plan from the Government.

[Nick Thomas-Symonds (Torfaen) (Lab)]

The hon. Gentleman has talked about the need for action soon. I got a sense of urgency from the constituents who contacted me. Does he agree that that sense of urgency needs to be reflected by the Joint Committee on Vaccination and Immunisation when reviewing the position with regard to meningitis B?

[Ben Howlett]

I thank the hon. Gentleman for his intervention; as ever, he is fast off the mark in intervening. I agree that urgent action is needed and I will come on to give the reasons why. From the evidence that we heard, there is, in effect, a two-year window for a vaccine’s shelf life, so I hope that when the Minister sums up, she will make that case clear. Previous campaigns on this issue have brought about change, and I can only hope that this campaign has gathered enough momentum to follow in their path.

Before I turn to the evidence that we heard in the joint sessions, I will mention a constituent of mine from Bath. I am sure that many hon. Members here have seen for themselves, as I have, the effects of this awful disease and what it does to those who suffer from it. One case that has particularly moved me is that of my constituent, Harmonie-Rose. She contracted meningitis B when she was just 10 months old. Just a few days after she had taken her first steps, she was taken into hospital with one of the worst cases of the disease that her doctors had ever seen. As she battled to survive, the toxins in her body spread to her limbs. The disease attacked and destroyed the tissue in her arms and legs, meaning that they had to be amputated in order to save her life.

Although Harmonie-Rose eventually recovered, she now lives as a quadruple amputee. Harmonie-Rose is a lovely, bubbly young child, living her life to the absolute full. She is beginning to adapt to her prosthetics; one day, she will have the freedom to move around that we all enjoy.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate the hon. Gentleman on securing this debate, and I also congratulate all the people who signed the petition. While this debate in Parliament is very timely, meningitis has in fact been around for a very long time. A constituent wrote to me to say that they were having difficulty getting the vaccination. More importantly, if they had gone private, it could have cost them something like £700, which is very expensive for any family, for any treatment. I wonder what the hon. Gentleman thinks about that.

[Ben Howlett]

I thank the hon. Gentleman for his intervention. He is quite right to pick up on the fact that the long-term costs to families need to be taken into account when the JCVI makes its decision about whether to extend vaccinations; I will come on to that issue later. It is quite clear that without the support of many of our constituents—those who fundraise and do so much work to help support families in need—those families would be in a much more challenging situation.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I commend the hon. Gentleman on leading this debate. He gave the very powerful constituency example of Harmonie-Rose. We heard evidence from the parents of Faye Burdett, who made it very clear how fast the disease can strike, and how vital it is that meningitis is treated as quickly as possible to minimise damage. Does the hon. Gentleman agree that, as we heard in evidence, children under the age of five have difficulty communicating the symptoms that they are experiencing, and that is one of the factors that should be taken into account very carefully when considering extending the vaccination programme to those in that age group? They cannot communicate, which delays the delivery of the medical treatment that they so vitally need.

[Ben Howlett]

I thank the hon. Lady for her intervention, and I agree. Without giving away what I am about to say, I think that the evidence is quite clear on that, and I hope that the JCVI will look at that in due course. The fact is that Harmonie-Rose and many other children see their lives dramatically changed, or even cut short, by this tragic and awful disease, and it is time that we did something about it, here and now.

The petition that led to the debate was started by Lee Booth, who was told that his eight-month-old child was too old to qualify for the meningitis B vaccine. Lee was quite rightly uneasy about that, as the group most susceptible to contracting the disease are babies under the age of one. I am sure that we were all pleased when the Government made the unprecedented announcement that from September 2015 all newborn babies would be given the vaccine, making the UK the first country in the world to make that provision.

[Michael Dugher (Barnsley East) (Lab)]

On behalf of colleagues from all parties in the House, I thank the hon. Gentleman for the eloquent and passionate way that he is leading this important debate. He is aware of the heartbreaking case of Mia Barton, who tragically passed away last month after contracting meningitis B. Her courageous parents, my constituents Rebecca Barton and Matthew Bright, are campaigning incredibly hard, even in the midst of such awful grief. Does the hon. Gentleman agree that, at the very least, the JCVI should be open to reviewing its recommendations to the Government, and that the tragic death of Mia Barton underlines the need to look again at the age requirement for the national vaccination programme?

[Ben Howlett]

I thank the hon. Gentleman for his intervention, and my condolences go to Mia’s family, because obviously anybody who is lost to this tragic disease is a loss overall, and it is horrendous what Mia’s family have had to go through; I have seen that with the family of my own constituent, and as MPs no doubt we have all seen that. There is a question around age, and I will come on to that shortly. Like Mia’s family, Lee Booth is calling for the Government to extend vaccinations up to the age of 11, and I think that we need to review some of the evidence today.

[Geoffrey Clifton-Brown (The Cotswolds) (Con)]

I congratulate my hon. Friend on leading this very important debate. I have been involved in this campaign for a considerable while. Does he agree that there is not an issue about the safety of the drug, because it is very safe—we know that because it has been used very safely on students in American universities—and that it is simply an issue of cost?

[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.

[Catherine McKinnell]

This is an opportune moment to highlight one of the other points that came out of the evidence we took in Committee: while vaccination is vital, public awareness is a huge concern for everyone. It is not only parents who need the best possible awareness of the symptoms; medical staff need it, too. Perhaps that awareness is not high enough. It would be good to hear from the Minister what the Government will do to ensure that public awareness and awareness among medical personnel is the best it can be, to ensure that the disease can be treated as quickly as possible.

[Ben Howlett]

We both heard the evidence that we need to increase awareness of meningitis B. Just because someone has had the vaccination, it does not mean that they are 100% certain not to contract the virus. We have to ensure wider awareness, not just among clinicians, but in nurseries and schools. That will ensure that the issue is higher up their agenda. I have seen some of the highly successful campaigns run by the Department of Health, and I hope we can support the Department in pushing more of those campaigns in the future.

We heard evidence about the importance of vaccinating young children, but Meningitis Now and the Meningitis Research Foundation point out that vaccinating teenagers could be the key to protecting the whole population from meningitis B, knocking out the infection at source before it can spread. That is because teenagers may be responsible for a high proportion of disease carriage. During our evidence sessions, we discussed at length the evidence to back that up. Vinny Smith, the chief executive officer of the Meningitis Research Foundation, explained that the bug lives in the noses and throats of people, particularly teenagers, but it does not live in everybody. The idea is that the key carrier group is targeted with a vaccination campaign that would hopefully protect the most at risk groups.

That targeted immunisation programme could be the solution when it comes to eradicating the disease. However, in-depth research has not yet been done on how effective that would be. It is hoped that the programme would severely reduce contraction of the disease, but it is unclear. What is clear is that a better understanding is at least three years away. We need to get the research process started as quickly as possible. It could benefit those young children who have not been vaccinated by reducing the chances of exposure. It is clearly too soon to advocate the immunisation of all teenagers, given that evidence is still unclear about the effects of immunisation beyond prevention in adolescents. When the research process is under way—I repeat that I hope it starts sooner, rather than later—a short-term option would be to extend the vaccination programme to under-fives who are at a higher risk of contracting the disease.

GlaxoSmithKline, which produces the vaccine, has said that it is prepared to work with the Government to ensure that there are enough vaccines for the catch-up period. The company will be under pressure from other nations looking to focus on their vaccination programmes. The Government need to place an urgent and vocal emphasis on vaccinations, as well as prevention. They would be an important voice in encouraging vaccination producers to have greater confidence in investing in the UK. All the families in the UK who want the reassurance a vaccination would bring would much rather we had a stockpile of vaccinations used in a one-off catch-up programme than for our country to miss out because we were slower on the uptake than our competitors. I hope that the urgency of the discussion is at the forefront of the Minister’s mind.

[Nick Thomas-Symonds]

I think the hon. Gentleman spoke about the benefits of reassurance. Does he agree that it is important that peace of mind is taken into account in evaluating the spreading of the vaccination programme?

[Ben Howlett]

Yes. I do not think JCVI gives as much consideration to peace of mind as it should. From speaking to the parents of Harmonie-Rose and others, I know that that sense of reassurance is in many instances unquantifiable, which makes it difficult for the JCVI to base a decision on peace of mind, but at the end of the day, my opinion, from the evidence we heard in the Committee hearings, is that we need a review of these matters.

As was highlighted repeatedly during the evidence sessions, the exact effect of the vaccine is still unknown, and parents should not ignore any potential signs of the disease just because their child has been immunised. They may still contract the disease, although the chance is much smaller. As ever, early identification is key. The families and experts we heard from stressed the need for strengthened education campaigns highlighting the symptoms of meningitis B, which include a rash that spreads quickly across the body, a high temperature with ice-cold feet and hands, and babies who are agitated and refusing to feed. While it is important that all parents receive that information, it also needs to be targeted at all those with responsibility for children, including childminders, teachers and nurses.

[Mr Jim Cunningham]

One of the things that struck me was that there has always been difficulty negotiating the price of drugs with manufacturers. Has the hon. Gentleman come across any evidence that in this case that could contribute to any delays with progress?

[Ben Howlett]

I have not yet seen that evidence, because we are a couple of stages away from that point. Compared with some of the other long-term battles in this place to get access to particular drugs, the conversations that were had with GlaxoSmithKline when the immunisation programme went up to the age of one were particularly small. Longer term, there is obviously a wider conversation that we need to have around access to medicines, if we are going into a world where everybody will, effectively, have a rare disease. We know even more now about genetics and the genome. The system is not set up to help the 68 million people in our country to access medicines in a quick way. That system needs to be created, and the work that the Under-Secretary of State for Life Sciences is doing is leading the way on that. I call on all Members in the Chamber to help speed up that process, and to put pressure on the Government to come up with an accelerated access to medicines review as quickly as possible to help the people that the hon. Member for Coventry South (Mr Cunningham) identified.

While we decide what needs to be done, we need to be thankful to the public for raising so much money to support the families living with the reality of a child having meningitis B, and thankful to the charities that provide them with financial, emotional and practical support. Only yesterday, some of the London marathon runners, including seven Members of Parliament, raised thousands of pounds to support such families. Such efforts are vital to providing support, and I know that families are thankful for those efforts. I am tremendously proud to represent a constituency where thousands of pounds have been donated and fundraised for Harmonie-Rose. I know the family are immensely grateful for all the support.

In summary, I am honoured to have been able to open today’s debate on behalf of the Petitions Committee. It is unsurprising that this campaign has gathered so much attention following the sad stories in the media. I hope that the Government listen to the widespread calls for a change in policy, and I hope that they have a one-off catch-up vaccination programme for those up to the age of five to put parents’ minds at rest while research is conducted into the impact on adolescents and the spread of this horrendous disease.

--- Later in debate ---

[Jane Ellison]

Of course, and I have tried to reflect on that important point. Nevertheless, raising awareness and ensuring the quick treatment of meningitis will always remain very important for that reason, so parents and healthcare professionals need to remain alert to the signs and symptoms of the disease, as was brought out in the moving speech by my hon. Friend the Member for Bury North (Mr Nuttall) when he talked about the attentiveness of Charlie’s mum as she monitored his symptoms.

Let me tell the House a little about what we are doing to raise awareness among healthcare professionals. Public Health England produces a range of training materials for immunisers, which includes information on the various programmes. It also collaborates with the charities in this area to support their work to improve healthcare worker knowledge, including through the development and distribution of resources aimed at each type of healthcare professional. It runs teaching and training events, and cascades briefing notes through networks. NHS England also does work to provide tools to help GPs to recognise meningitis. A great deal of work is going on in this area, but of course there is always a need to do more.

I turn to the issue of raising awareness among parents, because that is where we can do more. I announce to the House today that I have asked Public Health England to develop a national awareness campaign that will focus on the dangerous infections that parents worry about the most, including meningitis, septicaemia and sepsis. The campaign will focus on the symptoms that parents need to look out for. To get that right, we will work with the appropriate experts and charities, and of course more details will be available in due course. I will look to keep the relevant Committees up to date with that, but it is my intention that this information should be rolled out before the peak of cases in the winter.

[Ben Howlett]

Will the Minister also confirm that she will work with the Department for Education on helping those in the teaching professions and nurseries to identify the different conditions, so that we break down the silo type of response that sometimes prevents these sorts of conversations from being had more freely?

[Jane Ellison]

I have only had initial conversations with Public Health England about the shape of the campaign, but I can assure my hon. Friend that the officials and the other people working on this campaign will look very carefully at what has been said today, and at some of the ideas that hon. Friends and other Members have put forward, and of course they will take all those points into account.

--- Later in debate ---

[Ben Howlett]

I thank you, Mr Davies, and Mr Pritchard, who was here earlier, for chairing the debate. There have been incredibly powerful speeches today. I have seen this place at its best many times here in Westminster Hall during debates on petitions. I thank every Member here for contributing and for listening to the 820,000-plus people across the UK who care deeply about the issue. It shows that we as parliamentarians can really connect with our constituents on issues they care passionately about. I lend my thanks to the petitioners, the families, the charities and all those who gave evidence to the joint Health Committee and Petitions Committee sittings for their time, their passion, their work around our country and their fundraising for little children, including little girls like Harmonie-Rose in my constituency and many thousands of others in the rest of the UK.

I thank the Minister for her response. I was pleased to hear about the public awareness campaign that she has just announced to the House. It is absolutely right, as my hon. Friend the Member for Totnes (Dr Wollaston) said, that the decision-making process is clinically led. Sometimes it is rather irritating when politicians come in and say, “We know best.” Sometimes we do not know best, as my brother who is a doctor tells me many a time—although he is a junior doctor, but we will not get into that debate right now.

We rightly have a responsibility to hold the Government to account. Given what the Minister has just announced, I was pleased to hear her wish to report back to the Petitions Committee and the Health Committee on the reports that will be produced later in the summer. I look forward to seeing what reforms to CEMIPP will be discussed—as someone who is thoroughly dyslexic, with luck I will not end up having to spell that.

I thank all those who have taken part in the debate. This is not the end of the journey. Once we get to debate a particular subject in this Chamber, that is not the end of the road. There is no doubt that this is a long-term conversation that needs to be had. Any life lost is one too many. I thank you, Mr Davies, for chairing the debate.

Question put and agreed to.

Resolved,

That this House has considered e-petition 108072 relating to the meningitis B vaccine.

Brain Tumours

Ben Howlett Excerpts

Monday 18th April 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

It is a pleasure to serve under your chairmanship, Sir Edward. As a member of the Petitions Committee, it is a pleasure to be called to speak in this debate. I add my thanks to those who put together the petition, particularly Maria Lester and the Realf family—their love and passion for their son and brother came across in all our evidence sessions—and to all the others who came along and gave evidence. Hopefully this will be their report.

I declare that I am the chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Given the vast number of factors that cause brain tumours, I join colleagues in using this opportunity to call on the Government to do more to redistribute research funding more fairly among different cancer groups. There are limited resources available.

[Nadhim Zahawi]

I commend the hon. Member for Warrington North (Helen Jones) on securing this important debate. The UK model of partnership between Government, industry, universities, the NHS and charities is the right leadership model. The Government have led the way with a taskforce on anti-microbial resistance; maybe the way forward here is a taskforce on how to deal with early diagnosis and extra funding, as well as bids from charities that would attract that funding.

[Ben Howlett]

I agree that the Government have been leading the way. No doubt we will hear from the Minister about some of the work that they have been doing to create such partnership models. I pay tribute to the work that my hon. Friend has been delivering in that area.

Limited resources are available to fund research. A vast number of conditions fight desperately for every resource available, and researchers in every field work hard to get one step closer to a cure. It is important that we take a moment to thank all our constituents who are working tirelessly to advance medicine, find cures and improve the life chances of all of us.

[Jeremy Quin (Horsham) (Con)]

Given my hon. Friend’s expertise, has he considered the point made by the hon. Member for Warrington North (Helen Jones) about the loss of life years and whether it should be taken into account when we determine how to distribute our funds?

[Ben Howlett]

I agree, and as part of our report we have considered that and suggested that it be done. I hope the Government will consider a fairer funding formula in order to make a big impact on the number of life years lost. It is crucial that we strike the right balance when allocating research and development resources, both financial and otherwise, to ensure that all areas get a fair share of what is available. It is simply not right that issues such as brain tumour research continually miss out on funds.

I would like to take a moment to speak about a former councillor in my constituency of Bath, Richard Maybury, who sadly passed away around five years ago after finding that he had a brain tumour, which was unfortunately incurable. I have seen what his wife has gone through. He was in remission for a couple of years, and thereafter only palliative treatment was available. It is just one of many cases, but it brings up an important question. There are many varieties of brain tumour, some of which are curable but some of which can only be supported by palliative care. It is crucial that research is directed to all areas. Richard Maybury’s wife is calling for more to be done at an international level. We should be able to work with the likes of Germany and the United States, which are leading the way in this area.

There are clear imbalances that must be addressed in order to ensure that all crucial research areas receive sufficient funding. I know that the Government are committed to ensuring that we progress further with medicine and that more and more people survive all forms of cancers, yet the shocking figures that we have heard from the Chair of the Petitions Committee and the testimonials in its evidence sessions show that the funding model must be reconsidered to ensure that research into brain tumours is not neglected.

Brain tumour sufferers have benefited from the cancer drugs fund. They will benefit from the Government’s accelerated access to medicines review and from improvements to palliative care. More sufferers will benefit from genetic medicines as part of the genomics revolution, in which our country is currently leading the way. Data collection and participation in personalised medicine will improve with new emphasis from the Government. I agree with the petitioners, however, that brain tumour sufferers should not be forgotten, but should receive a fairer share of research funding. I hope that the Minister will consider this group of sufferers when making his closing remarks.