Lobular Breast Cancer

Helen Grant Excerpts

Tuesday 10th December 2024 Westminster Hall

[Helen Hayes]

I thank my hon. Friend for bringing the story of her constituent to this debate. This is exactly the reason why we need to find better means of diagnosis and treatment for lobular breast cancer. I will come talk about some of those means shortly.

Currently, there are no treatments specific to lobular breast cancer. This must change. The issues have been well documented by Dr Susan Michaelis, founder of the Lobular Moon Shot Project. Susan was 50 when she noticed a small, pale, 1 mm mark on her left breast in 2012. She had no lump and both a mammogram and an ultrasound were reassuring. Six months later, the small mark had become redder and Susan had a biopsy that confirmed she had invasive lobular breast cancer. Susan’s cancer had spread to her neck, the back of her head, the eye area and her ribs. She is now on her sixth line of treatment.

Dr Michaelis is a qualified air accident investigator. She focuses on how accidents can be prevented by learning from past mistakes, and has used these skills to look at how treatments have failed her. In doing so, she has identified the need for a new approach.

[Helen Grant (Maidstone and Malling) (Con)]

I congratulate the hon. Lady on securing this really important debate. Does she agree that specific forms of cancer like lobular breast cancer require specific funding, research and treatment, and that a one-size-fits-all approach is going to fail millions of women? I declare an interest in asking this question in that last year I was diagnosed with lobular breast cancer. I am cancer-free now, thank God, as a result of the help of the Royal Marsden hospital. Tragically, that is not the case for many, many women in this country.

[Helen Hayes]

I thank the hon. Lady very much for that intervention and for sharing her personal story.

I pay tribute to Dr Michaelis for her research and campaigning on lobular cancer. I hope that all Members have received their Dr Susan Michaelis rose this week, named in her honour, and will plant it as a reminder of the urgency of her work.

There are so many other stories. Katie Swinburne was 47 when she was diagnosed with invasive lobular cancer in her left breast, leading to a double mastectomy, radiotherapy and 10 years of targeted chemotherapy. She writes:

“It is very hard to accept that none of my treatment is specific to lobular breast cancer and no one can tell me if it is working or has been effective…I find myself living in fear of recurrence. I deserved to have an early diagnosis. I did not get this. I deserve a specific treatment; I do not have this. I have three young children; they deserve to have a mum. I deserve effective follow up; I do not get this. I need you to change this for me, my husband, my family, all the women with a lobular diagnosis and all the women who will be diagnosed in the future.”

Emma Hunwick writes:

“I was a happy, healthy and relatively fit 49-year-old professional woman when I noticed a tiny pull in my right nipple. No lump, no other obvious external changes. An annual medical and referral just 12 days later resulted in a clear mammogram and a clear second 3D mammogram. An ultrasound then reported an area of 2 cm of concern. I rapidly went from ‘caught early’ to borderline stage 2 breast cancer. After my mastectomy I was informed that I was in fact stage 3c invasive lobular breast cancer…I am now at high risk with predicted survival outcomes at 10 and 15 years of approximately 45% and 30% respectively...I need to know that the vital scientific research into lobular breast cancer is being done now. Not next year or in 10 years but starting now, so that I might survive longer and continue to work with less worry about whether the standard monitoring tests that missed my first cancer, will miss a recurrence.”

Kirstin Spencer’s story is also typical. Diagnosed in 2018, she and had a double mastectomy, but was warned that, especially in the first two years afterwards, the disease could recur in areas such as the scar tissue, chest wall and surrounding skin. She was told that vigilance and well-managed medical follow-up were everything. Within a year of her diagnosis, she developed red-flag symptoms that were repeatedly dismissed by her breast specialist. She was refused follow-up treatment and sent for psychological counselling. By the time that a new GP listened to her concerns, substantial recurrence was confirmed, with extensive metastatic disease.

My mother-in-law Cressida’s story is very different from Heather’s, and we are all so grateful to the doctors who treated her and for the subsequent 22 years of health that she has had and continues to enjoy. Cressida did not have any grandchildren when she was diagnosed, but a prompt diagnosis meant that she has been able to be closely involved in the lives of eight subsequent grandchildren, as a much-loved granny. But Cressida’s outcome was about luck rather than design, so much so that it was only very recently, when reviewing her medical notes, that she found out that the type of cancer she had was lobular.

Breast cancer survival rates are directly impacted by the stage of diagnosis. Late diagnosis, which is all too common for lobular breast cancer, leads to far worse outcomes. To improve this situation, we need much better awareness of the full range of breast cancer symptoms, including the very small skin changes that are typical of lobular cancer. Not all cancers cause lumps. A clear mammogram does not provide absolute reassurance, because lobular cancer typically does not show on a mammogram. We need lobular-specific research and treatments.

Staff at Manchester Breast Centre have stated that they are able to do the research to understand the complete pathology of lobular breast cancer—research that has never been done—to pave the way for bespoke treatments to be developed. This will take five years and cost £20 million—moonshot funding that will be recouped many times over in the tax revenue paid by women like Heather, who would be able to continue working, and in the NHS costs that will be saved.

Hundreds of MPs in the last Parliament and this one have listened to the stories of constituents affected by lobular breast cancer and pledged their support for the Lobular Moon Shot Project. Lobular cancer is the sixth most common cancer in women. It is more common than ovarian, brain, central nervous system, non-Hodgkin lymphoma, pancreatic and kidney cancers. I know that the Minister cares deeply about women’s health equality and I put it to her that lobular cancer is a women’s health equality issue.

Suicide and Mental Health of Young People: Tatton

Helen Grant Excerpts

Tuesday 26th November 2024 Westminster Hall

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I am grateful to the right hon. Member for Tatton (Esther McVey) for securing this debate and raising many important issues. I also thank her for sharing the tragic story of Olivia. My heart goes out to Olivia’s family and loved ones; it is a truly heartbreaking situation and process that they have gone through.

The right hon. Lady made a number of important points about withdrawal from SSRI antidepressants. A number of those points are quite specific, and I do not have in specific responses my notes. With her leave, I would like to write to her with responses on those points. She made a point about the coroner’s advice, which contained a lot of useful counsel on how we might address and tackle the issues raised. I will certainly look at that in detail, and will happily take those matters forward with her. We have a shared interest in addressing the issue. If the system is not working and people who are on that antidepressant are not being supported with withdrawal, we need to look at that in detail. We need to tackle it—I share her views on that.

I will turn to some more general points about the Government’s position on mental health. We have made suicide prevention and mental health a priority, especially for young people. Many of the issues raised today are symptomatic of an NHS that is broken. Looking at the figures, the challenges that face the NHS are truly sobering.

About 50% of lifetime mental health conditions are established by the time an individual is 14 and 75% by the time they are 24. Evidence suggests that the prevalence of mental health conditions is rising among children and young people. In 2023, 20.3% of eight to 16-year-olds had a probable disorder, compared with 12.5% in 2017. Of course, the covid-19 pandemic exacerbated needs, with analysis showing that 1.5 million children and young people under the age of 18 could need new or increased mental health support following the pandemic.

According to the Darzi review, 343,000 referrals for children and young people under the age of 18 are waiting for mental health services, including 109,000 referrals waiting for more than a year. Under the NHS Cheshire and Merseyside integrated care board, as of the end of September 2024, 10% of children and young people still waiting for first contact with NHS-funded mental health services were waiting for more than 951 days, equating to 1,301 people. Half of those still waiting had been waiting for more than 300 days. There are 13,010 children and young people still waiting for first contact with NHS-funded mental health services.

Until recently, there had been an upward trend in suicide rates for children and young people. For women between the ages of 10 and 24, the rate has nearly doubled since 2012, rising from 1.6 per 100,000 to 3.1 per 100,000 in 2023.

[Helen Grant (Maidstone and Malling) (Con)]

Over the past 10 years in England and Wales, one student has died every four days as a result of suicide. Despite that forlorn tragedy, the law remains unclear about the duties and responsibilities universities have towards their often very vulnerable young students. Will the Minister meet me and members of the LEARN Network and ForThe100 to discuss the introduction of a statutory duty of care for all higher education providers?

[Stephen Kinnock]

I thank the hon. Lady for that important intervention. I am happy to meet her and the LEARN Network. The Government cannot do all this alone; we need to work in partnership with all sorts of different stakeholders, including universities and the higher education sector. We would support any partnership working that we can do.

Until recently, there had been an upward trend in suicide rates for children and young people. For women between the ages of 10 and 24, the rate has almost doubled, but the trend for children and young people has flattened in the past year, despite overall increases in suicide. Although those rates are low compared with those for other age groups, children and young people are a priority group in our mission to tackle suicide. The Department is commissioning research via the National Institute for Health and Care Research to advance our understanding of why rates of suicide have been increasing in certain age groups.

We are committed to reforming the NHS to ensure that we give mental health the same attention and focus as physical health. It is unacceptable that too many children, young people and adults are not receiving the mental health care that they need. We know that waits for mental health services are far too long. We are determined to change that. That is why we will recruit 8,500 additional mental health workers across children’s and adult mental health services. We will also introduce a specialist mental health professional in every school and roll out young futures hubs to provide timely mental health support to our children and young people.

We are working with our colleagues at NHS England and the Department for Education as we plan delivery of those commitments. Furthermore, the Government are also committed to tackling suicide as one of the biggest killers in our country. The suicide prevention strategy proposes targeted support for priority groups such as children and young people. The Department for Education is reviewing the statutory guidance on relationships, sex and health education, and the Secretary of State for Education is clear that children’s wellbeing should be at the heart of it.

Some 79 voluntary, community or social enterprise organisations up and down the country have been allocated funding through the Department of Health and Social Care’s £10 million suicide prevention grant fund over the two years to March 2025. These organisations—from local and community-led through to national—deliver a broad and diverse range of activity that will prevent suicides and save lives.

Early intervention on mental health issues is vital if we want to stop young people reaching crisis point. Schools and colleges play an important role in that early support, which is why we have committed to providing a mental health professional at every school. Mental health support teams help to meet the needs of children and young people in education settings; such teams, which are made up of mental health practitioners and education mental health specialists, are available in schools in Tatton.

However, it is not enough to provide access to a mental health professional when young people are struggling. We want the education system to set young people up to thrive, and we know that schools and colleges can have a profound impact in promoting good mental health and wellbeing. Doing this well takes a holistic approach, drawing in many aspects of the school or college’s provision. Many schools are already doing that, and my Department is working alongside the Department for Education to understand how we can support such good practice across the sector, and across the length and breadth of our country.

The opportunity mission will break the link between people’s background and their success. The mission will build opportunity for all by giving every child the best start in life: high-quality early education, early child health, home learning environments and family support. The mission will also support children to achieve and thrive, ensuring high school standards with a broad curriculum, excellent teachers and targeted interventions, an inclusive approach to special educational needs and disabilities, mental health support, access to arts, culture and sport, and youth services and provision.

In our manifesto, the Government committed to rolling out young futures hubs. This national network is expected to bring together local services, deliver support for teenagers at risk of being drawn into crime or facing mental health challenges, and, where appropriate, deliver universal youth provision. The hubs will provide open-access mental health support for children and young people in every community.

We are concerned about the widespread availability of harmful material online, promoting content on eating disorders, suicide and self-harm, that can easily be accessed by people who may be young and/or vulnerable. We have been clear that the Government’s priority is the effective implementation of the Online Safety Act 2023, so that those who use social media—especially children—can benefit from its wide-ranging protections as soon in their lives as possible. Earlier this year, Ofcom concluded its consultations on the draft illegal content and child safety codes of practice. We expect the illegal content codes to be in effect by spring 2025, with the child safety codes following in the summer.

I will turn to other aspects of our plans to improve mental health services. The Mental Health Bill, which was announced in the King’s Speech, will deliver the Government’s manifesto commitment to modernise the Mental Health Act 1983 by giving patients greater choice and autonomy and enhanced rights and support, and aims to ensure that everyone is treated with dignity and respect throughout their treatment. It is important to get the balance right to ensure people get the support and treatment they need when necessary for their protection and for that of others.

I am pleased to say that the Bill has been introduced in the Lords and will be coming to the Commons in the new year. The Bill will make the Mental Health Act fit for the 21st century, redressing the balance of power from the system to the patient and ensuring that people with the most severe mental health conditions get better, more personalised care. It will limit the scope to detain people with a learning disability and autistic people under the Act unless they have a co-occurring mental health disorder that needs hospital treatment.

I conclude by once again commending the right hon. Member for Tatton for securing the debate and colleagues from across the House, including the hon. Members for Maidstone and Malling (Helen Grant) and for Strangford (Jim Shannon), for sharing their insight on the vital issue of suicide prevention and mental health care for children and young people. I am committed to working with the right hon. Member for Tatton and her hon. Friend, the hon. Member for Maidstone and Malling, to take forward these issues, and I hope that we can, together—across the House—address this vital issue.

Question put and agreed to.

Breast Cancer: Younger Women

Helen Grant Excerpts

Tuesday 12th November 2024 Westminster Hall

[Wera Hobhouse (Bath) (LD)]

I beg to move,

That this House has considered breast cancer in younger women.

It is a pleasure to serve with you in the Chair, Mr Vickers. I thank the Minister for being here to respond.

Every woman deserves a fair chance against breast cancer, no matter her age. It is the most common type of cancer in the UK. Most women who are diagnosed are over 50, and it is therefore a disease often associated with older women, but young women are at risk, too. Breast cancer in younger women is often caught later when it is more advanced. That is because there is no routine screening and too often symptoms get dismissed as something less serious. That must change. Awareness and early detection are crucial, no matter your age.

The issue arose for me during a constituency surgery when my Bath constituent Lucy shared her story, which resonated with me because my nephew’s mother died many years ago of breast cancer aged 35. In 2021 Lucy, who was 38, had two young children and was diagnosed with primary breast cancer. She underwent a mastectomy, chemotherapy and radiotherapy before being given the all-clear. In 2024, when she was 41, a self-initiated MRI scan tragically came back showing that her cancer had returned, leading to a diagnosis of secondary breast cancer, which is currently incurable. In both cases she found it a struggle to be diagnosed.

The first time, despite her mother having had breast cancer and Lucy presenting with a lump, at least three different doctors told her that it was likely to be hormones and nothing to worry about. It was not until she requested the biopsy, which ultimately came back showing it was cancer, that the diagnosis was made. The second time she repeatedly voiced concerns about a symptom that she was experiencing, but she was repeatedly assured that it was just a side effect of the treatment. Still concerned, she approached the GP, who did some initial tests but ultimately suggested that her worries were anxiety-driven. After that appointment she came out and sobbed in her car.

Searching for peace of mind, Lucy then paid privately for a breast MRI, which tragically revealed that the cancer had returned, but by then it was too late. In both cases—first by requesting the biopsy and secondly by initiating an MRI—it was up to Lucy to fight for a diagnosis.

[Helen Grant (Maidstone and Malling) (Con)]

I congratulate the hon. Lady on securing this important debate. Because of the age restrictions in accessing NHS mammograms and the importance of early diagnosis, which she highlights, does she agree that self-awareness and self-examination in young women is critical in the battle to beat breast cancer?

[Wera Hobhouse]

The hon. Lady is absolutely right that we need to continue to raise awareness, but I am pointing out that even when young women are aware and go to a doctor, the doctor says, “Don’t worry about it.” However, I agree that we need to continue to make sure that women examine their breasts and are aware of the risks of breast cancer, even when they are young.

Sepsis Awareness

Helen Grant Excerpts

Wednesday 9th October 2024 Westminster Hall

[Lee Anderson (Ashfield) (Reform)]

I beg to move,

That this House has considered sepsis awareness.

It is a pleasure to serve under your chairmanship, Sir Christopher. Sepsis is one of the least well known medical conditions and the No. 1 cause of preventable death in the world. Eleven million people die each year in the world from sepsis, and that represents one in five of all deaths in the world. Sepsis can be very difficult to detect and hard to distinguish from other illnesses. Sepsis claims more lives than lung cancer, bowel cancer, breast cancer and prostate cancer put together. That is truly astonishing. Across the UK alone, 48,500 people a year die from sepsis. The Academy of Medical Royal Colleges suggests that the figure is much higher—about 68,000 a year. That is incredible.

Given that there are approximately 200,000 cases of sepsis each year in the UK, it costs the NHS between £1.5 billion and £2 billion every single year and the wider economy at least £11 billion a year—some people think the figure is closer to £15 billion. The direct cost of sepsis to the NHS is 1% of its budget.

One reason why I requested this debate today is that I have many constituents who have been unfortunate enough to suffer from sepsis. I have a very brave young lady in the hall today. That is Abbi; she is sitting at the back. I am incredibly proud of the strength and determination she has shown to overcome this illness—she is a survivor. I will tell Abbi’s story. On 28 November 2022, she had been to her doctor’s for some antibiotics for her tonsils, because she was a long-time sufferer of tonsillitis and thought it was tonsillitis again. She had suffered with that all her life, so that was understandable. At 6 pm on that day, she was blue-lighted to King’s Mill Hospital in Ashfield, to the accident and emergency department, because she was fighting for breath and literally dying in front of her husband, Steve, who was sat there. She was given numerous injections of adrenaline while travelling to the hospital, because it was thought that she was having an anaphylactic fit and it was a reaction to the antibiotics that she had had that morning. When she arrived at A&E, she was put on 10 litres of oxygen by the staff, but it was evident that that was not enough; it was not doing the job. But they did not, unfortunately, administer any antibiotics or put her on IVs at that time; no blood tests were taken. Her husband, Steve, was constantly asking the staff, “Is there something else we can do for Abbi?” Only now, looking back a few years later, is it clear that sepsis was never thought of at the time.

Abbi very quickly deteriorated, so she was transferred to the intensive care unit at King’s Mill Hospital, where she was placed in an induced coma. She was fighting for her life, and all her organs began to shut down at a very rapid rate. Only when the ICU did some tests, when the results started to come through, did staff realise how ill she was and that she had actually got pneumonia, strep B and sepsis.

However, that was just the start of Abbi’s journey. When the ICU team realised that the situation was far more complicated than they could deal with at King’s Mill, they contacted Glenfield general hospital in Leicester. She was transferred there to be placed on an ECMO machine, which takes the place of the heart and lungs—I suppose it is a life support machine. She was lucky to have fitted the criteria to go on that machine. She stayed on it for the next three weeks, in a coma and fighting to stay alive. Without it, she would not be here today. There are only five of those machines in the UK, and it costs the NHS £20,000 per day, per patient. While she was on the ECMO machine, it was visible to Abbi’s family that she would lose both hands and both legs beneath the knee, because sepsis had taken over her body and given her gangrene.

On 17 December, Abbi was transferred back to the ICU at King’s Mill hospital because she no longer had to be on the ECMO machine at Leicester, but she still needed round-the-clock intensive care treatment. On 9 February, she was transferred to the burns and plastics ward at Nottingham city hospital, where she would wait for her amputations. Imagine that—having to wait in hospital knowing that they were going to take her arms and legs away, after everything she had been through. On 4 May, she was discharged after spending six months in hospital, coming out as a quadruple amputee. She told me just before the debate began—she sometimes forgets—she also lost the sight in her left eye. Incredibly sad. Incredible, brave lady. That is Abbi’s story, and I thank her for sharing it with me.

Other constituents have contacted me about sepsis, including Karen from Ashfield. Her elderly mother contracted sepsis and had an awful time at the hospital. Her diagnosis was slow. It was not picked up properly, and, just a few months later, she sadly collapsed and passed away. Neil from Ashfield was much luckier. It was picked very quickly. They got the antibiotics into his body and he made a full recovery. With Pam from Ashfield, it was lucky for her husband that she was a former nurse. She recognised the symptoms and insisted that the hospital put the IV antibiotics into his body very quickly. There is a window of about 12 hours to get the antibiotics in. The point of today’s debate is to get the awareness out there, not just in the wider community but in hospitals, because it is very unfortunate that sepsis is being missed. Maybe if they had picked it up quicker in Abbi’s case, we would not be sat here—I do not know. Shirley from Ashfield had a better experience. The hospital picked it up very quickly and she made a full recovery, so there are people making full recoveries.

We all know about the sad story of our colleague, Craig Mackinlay—Lord Mackinlay now. I have had conversations with him over the past few weeks about this debate, although he could not be here today. He had a torrid time. His wife was told he was going to die, but he fought back. I think she put pictures of his family on the ceiling of his room at the hospital. He is a fighter, is Craig. It nearly took his life and it has taken him several months to get over it. We did not know where he was; we thought he was just on holiday somewhere at first. We did not see him for months and then we heard what condition he was in. He came back to Parliament a few months back. I will be honest: there was not a dry eye in the House when he walked in as the bionic man. It was so emotional. He is living proof that we can fight back from this disease and have a reasonable quality of life, given the right support and a good hospital.

As I have said, 48,500 people a year die from sepsis. Other organisations put that figure much higher. That is almost 1,000 people a week dying from sepsis in this country, but if somebody was stopped in the street and asked what it was, they would probably struggle to say. The symptoms are a very high or low temperature, uncontrolled shivering, confusion, passing less urine than normal, and blotchy or cold arms and legs. I know that because a few years back, my wife had those symptoms. My wife has cystic fibrosis and she is post double lung transplant, so she has all sorts of medical problems as well, and we thought that it was maybe a rejection of the lungs or pneumonia. We managed to get her to the hospital, and it was sepsis. They told us at the hospital that if we had left it any longer, she would have died—simple as that—because of other complications and she has no immune system. Last year, when she had it again, we knew straightaway what it was. She had the same symptoms, so we got her there pretty sharpish.

I also learned today from Abbi that, on her road to recovery she got her prosthetic limbs but she is also—I do not know if the Minister is aware of this—on a list at Leeds hospital to have a hand transplant. She has a prosthetic for her right arm, but she is on the list for a hand transplant—it is absolutely amazing that we are doing that now. It offers people a lot of hope—Abbi does not stop smiling. We have a campaign in this country for strokes and we all know the symptoms now. We have all seen the stroke campaign on TV about the facial symptoms or someone not being able to talk or keep their arms up. We know all that now. I would like to see a campaign for sepsis so that families and, more importantly, our hospitals are fully aware. What does it cost to give somebody some antibiotics as a precaution if they are shaking, are cold, are blotchy and have a fever? For goodness’ sake, what does it cost to put an IV on them and get some antibiotics pumped into them while they do the other checks?

[Helen Grant (Maidstone and Malling) (Con)]

I congratulate the hon. Gentleman on securing this important debate. Does he agree that sharing the stories of all those we know who are affected by sepsis, as he has done so sensitively today about his Abbi, helps to highlight the importance of early recognition of this dreadful disease and the importance of early diagnosis?

[Lee Anderson]

The hon. Member is absolutely right, if I am honest, and that is what this debate is about. It is about sharing stories. As I said earlier, we could probably ask 100 people on the street what sepsis is and the vast majority would struggle to tell us what it is and what the symptoms are. What we need, and it is quite right, is a campaign for awareness, whether that is through schools or on social media or the TV. I would really like to see a campaign on sepsis so that everybody knows the symptoms. I am going to wrap up now—I have spoken for 13 minutes. I know there are lots of colleagues present who want to speak as well and I am conscious that we have only an hour.

David Fuller Case

Helen Grant Excerpts

Monday 8th November 2021 Commons Chamber

[Sajid Javid]

Yes, I can give my hon. Friend that assurance. His local hospital does some excellent work in supporting local people in all their health needs and has done so for a long time. I have no doubt that this news will be incredibly distressing to all the people who work in the hospital, and they will get the support that they need. The other support that is necessary for the hospital to continue with its good work and care will remain, and will remain very important.

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

Nothing can undo the horror that the families of victims are going through, but I am pleased to hear what my right hon. Friend has said. Could he provide some further and better details on the timescale for the final report that will come out of the inquiry? He mentioned an interim report early next year, but what about the final report? When does he anticipate that the recommendations that might be made in that report will be implemented?

[Sajid Javid]

Yes, I am happy to provide more information on that issue. I have asked Sir Jonathan to provide the interim report from his inquiry early next year. As my hon. Friend and other hon. Members will understand, it will take some time to get the terms of reference in place and make sure that the review is done properly, but it is important to learn some early lessons, especially around the local hospital trust. I anticipate that the interim report might take about three months, but I will wait to see Sir Jonathan’s final analysis. I hope that the final report will come some time next year; I do not want to set a timetable now without knowing the full terms of reference.

I draw my hon. Friend’s attention to the work that I have asked for from the Human Tissue Authority as well as the independent inquiry. I have asked it to do an independent review of its own advice to me on the current regulations.

BAME Blood, Stem Cell and Organ Donation

Helen Grant Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin]

I agree with the hon. Gentleman’s point. The disparity urgently needs to be addressed and I therefore welcome the very timely review by my hon. Friend the Member for Wolverhampton South West (Eleanor Smith) on BAME stem cell and organ donation.

The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. According to the review, fewer than 5% of donors who gave blood in the past year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are black. BAME people are unequally affected by that, as they are subject to a higher demand and shorter supply than other groups. The most common blood diseases that affect BAME communities are thalassaemia and sickle cell disease.

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

I congratulate the hon. Gentleman on securing this important debate. While we know that there are problems and that there is much still to do, will he join me in congratulating Kanya King and the MOBO Awards on all the great campaigning work that they do to increase BAME blood and organ donation? They do an excellent job. Will he also join me in encouraging other organisations and companies with existing BAME reach to campaign in a similar manner?

[Mohammad Yasin]

I agree with the hon. Lady. BAME donors make up 15% of the stem cell register; black donors make up just 1.2% of potential donors on the British Bone Marrow Registry. I hope the Minister shares my concerns about those statistics and that she will commit today to agreeing in full to the recommendations of the review by my hon. Friend the Member for Wolverhampton South West.

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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

Social Care Funding

Helen Grant Excerpts

Thursday 10th November 2011 Westminster Hall

[Neil Carmichael]

Well, we certainly have experience in our Conservative association back at home. An interesting thing about my constituency is that I came across somebody who was 106. She wanted to make a complaint and she came up to me at some speed. I did not think it was anything to do with the care she was getting, and it was not: she had received a birthday card from Her Majesty the Queen every year for the past six years, but unfortunately she had received the same one each year, and she wanted a different one.

As that story shows, we have an ageing population, and that brings challenges, of which dementia is obviously one. More and more people are experiencing dementia, not just because they have it but because a family member has, and that can be just as challenging. We need to prepare the ground because an increasing number of people have dementia.

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

One million people will have dementia by 2025. Does my hon. Friend agree that this terrible disease must have a proper place in any funding review or funding reform?

[Neil Carmichael]

That is exactly the theme I was about to develop, so I will simply agree with that excellent point.

In my constituency, we are promoting the “Write it Down” campaign. If somebody thinks they or a member of their family is getting dementia, but they are not quite sure, it is a good idea for them to write down sequences of events, because that will trigger a recognition or an acceptance that they or their loved one are forgetting things. The campaign is gaining quite some traction in my constituency, and I recommend that hon. Members promote it in theirs. Gloucestershire is getting quite a lot of accolades for the campaign, and families are successfully using this tool to diagnose dementia, which, we should remember, is not an easy thing to do.

I want to talk briefly about carers. Their role has been mentioned, and rightly so, because they do an enormous amount, and their numbers are huge. A fact that is sometimes overlooked, however, is that a lot of carers are surprisingly young, and some still go to school. We need to bear that in mind.

Health and Social Care (Re-committed) Bill

Helen Grant Excerpts

Wednesday 7th September 2011 Commons Chamber

[Nadine Dorries]

That is a very important point, and in a moment I will come on to the financial link and the financial incentives, with some other information that we have.

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

Will my brave hon. Friend confirm her belief that existing counselling services have the capacity to deal with the level of referral?

[Nadine Dorries]

That is precisely the next point in my speech; my hon. Friend must have been looking over my shoulder!

I now turn to the counselling provision available to women today. Many women do not want or need counselling. They find out that they are pregnant and know exactly what they want to do, but those are frequently the women who are supported—who have partners, family and friends who will support them through that awful situation. No woman wants to have an abortion, but many know that they have to, for various reasons, and this amendment is not about them. A mystery shopper, however, recently approached several abortion clinics posing as a young woman who was pregnant and unsure of what to do. Every time I mention BPAS there is a howl from Opposition Members, but I am going to mention it in this instance, because this is irrefutable evidence.

The individual posed at a central London clinic as a 26-year-old pregnant woman who did not know what to do, and she asked for counselling. I shall come on to the difference between counselling and consultation, but she said that she did not know what to do, because she had been given the immediate consultation, was not sure whether to go through with the pregnancy, and therefore wanted an abortion. She was told that, at that very busy clinic in central London, one hour of counselling was available at one set time per week. I believe that when she revealed her identity she was offered another hour.

In fairness to BPAS, it says that it has flexibility in the system and can offer more hours. Why did it not do so? If it has flexibility, how much is there?

Maternity Services

Helen Grant Excerpts

Tuesday 26th October 2010 Commons Chamber

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

In a few months, if the current plans proceed, there will be no consultancy-led maternity service at Maidstone hospital in my constituency, which means that every year, 2,000 mothers will be put at greater risk, and lethal consequences could follow. Maidstone is the county town of Kent, and is a growth point area. There are many areas of multiple deprivation, and we have high rates of teenage pregnancy, so we need a full maternity service. Our community has spoken out loud and clear against the reconfiguration plan. Thousands have signed petitions saying no. Our borough and county councillors have said no. The business community has said no. As a local resident and mother of two, I have said no, and in a survey with a 77% response rate, 97% of our GPs also said no.

We are not people who are resistant to change. We are not asking for anything new; we do not want anything extra. We simply want to retain our existing services, and make safe and genuine choices for our people. Choice, we are told by the trust, will be available to Maidstone mothers for the first time, but the choice is between a midwifery-led birthing unit with six beds for the county town of Kent, serving 250,000 people, or travelling to Pembury, Medway, Ashford or Dartford. However, mums with complications will have no local choice, and neither will mums needing an epidural, mums needing a caesarean section or mums who just want to know that they will have the best expertise and equipment available to them when their baby decides to come. The trust says that patients will vote with their feet, but it does not tell people that, if they want to remain in Maidstone, they cannot do so.

I have with me a bundle of letters to the Secretary of State for Health signed by more than 100 GPs in the Maidstone area. They say that the new journey times, over bad rural roads, are unacceptable. They say that the extra risk and stress to mothers in labour is unacceptable. Those GPs also say—this is really worrying—that it is a near certainty that some babies born in Maidstone may die or suffer brain damage while en route to Pembury or elsewhere. They are our GPs: they know exactly what they are talking about. They have voted. They have put their names down and they are saying no. They are talking about our mothers, our children and our babies. The campaign has been going for about two and a half to three years while I have been involved. It is about community, choice and safety. The evidence against downgrading is powerful and profound. The reconfiguration plan is very wrong and dangerous, and it will lead to fatalities. I urge the Secretary of State to reject the reconfiguration plan when he considers the matter imminently.