Heart and Circulatory Diseases: Premature Deaths

Mark Tami Excerpts

Thursday 22nd February 2024 Commons Chamber

[Dean Russell (Watford) (Con)]

I beg to move,

That this House has considered premature deaths from heart and circulatory diseases.

I start with something I never thought that I would stand here discussing. As I shared in Prime Minister’s questions a few weeks ago, at 47 I had a heart attack. It happened back in August last year, but I must admit that it took several months for me to feel comfortable talking about it more publicly—although I knew that I was on the path to full recovery, and I feel that I am now recovered. As I said in Prime Minister’s questions, I feel a bit thinner for it—that is the physical response. One thing that came through, beyond the fantastic support of the NHS, to which I will refer later, friends and family and my team, was the support of the British Heart Foundation. Its online resources, support and guidance were invaluable in helping me when I was on my own, to find a way through this, get on the path to recovery and understand the stories of others.

I hope the debate will not just share my story—this is not about me—but raise awareness of the early signs and symptoms and some areas of prevention, as well as raising with the Minister, on behalf of others who were perhaps not as fortunate as I was, some of the challenges to early identification of risks. I will aim to cover as much as I can, but I know that others will want to speak, so I will not hog the short time we have. I hope that even one person might come away from watching this debate— I am sure there are millions at home following this debate this afternoon—able to spot a sign for themselves or for a family member or friend, which might save or change their lives.

To start, let us talk about the symptoms. I appreciate that symptoms differ slightly for everybody, and the British Heart Foundation has excellent examples and guidance for what they might be. For me, it started with feeling a sort of numbness and tingling sensation in my left arm and an increasing tightness in my chest, which, as it grew, started to filter to the back of my body. It was not immediate. One often thinks of a heart attack as a cardiac arrest, which is where the heart literally stops and one needs a defibrillator or CPR, but a heart attack can feel more like a slow process that happens quite quickly, if that makes sense.

Even though many years ago, I worked on campaigns to talk about these symptoms with the British Heart Foundation as a client of mine, and even though I knew instinctively what was happening to me, as I started to get those symptoms, even I thought, “I don’t want to phone 999. I don’t want to waste their time.” I ended up calling 111, expecting to hear, “Don’t be silly; take a pill. Go to your GP tomorrow and they’ll get you sorted out.” But they did not say that. The message I had back immediately was that an ambulance was on its way, at which point, I thought, “This might be a bit serious”—but even then I was still in a little denial about the situation.

I will not tell the full story, but I was transferred very quickly to Watford General Hospital, where I was seen and given exemplary care. The East of England Ambulance Service was absolutely incredible with its speed and the compassion and support I was given—the same was true at Watford General, a hospital I love dearly. I was then transferred to Harefield Hospital, where I was again seen very quickly. During that process, I realised the enormity of the situation I was in and the potential that I could lose my life, although I was then unlikely to because I was in the right place at the right time.

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

The hon. Gentleman mentioned the work of Harefield Hospital. My son has been at Harefield for four months after having a heart transplant just before Christmas; it has been a very traumatic time. I would like to place on record the incredible support and care the hospital provides. I also want to say that we think of heart attacks, heart failure and similar conditions as affecting people my age—maybe people a bit younger or a bit older—but heart failure and heart conditions can affect young people as well. We must not have lazy diagnoses where people think just because somebody is young, they cannot possibly have heart issues, cancer or other issues. As I said, I really want to put on record the great support that Harefield Hospital provides.

[Dean Russell]

May I send my best wishes to the right hon. Gentleman’s son? From my experience, his son is in absolutely the right place, and I hope he has a swift recovery. I echo the right hon. Gentleman’s comments—the staff at Harefield were exemplary at every stage of the process.

Again, I put on record—for my own benefit, rather selfishly—my gratitude to the East of England Ambulance Service, Watford General Hospital and Harefield Hospital, but also the cardiac rehabilitation teams. The experience of being in hospital and having a heart attack was a matter of days, but that of the rehabilitation, exercise programmes and diet changes—all the things that are so important—was a matter of months. I can talk about it not so much as having saved my life, but it has changed my life. I cannot say that I am pleased that it happened, but I am pleased that it happened the way it did, if that makes sense, in making a difference.

I recognise that my experience is not unique, however lucky I am in the experience I have had and the subsequent opportunity to use the platform of Parliament to raise awareness of these conditions and the work of the British Heart Foundation and the NHS. It just felt very apt to have this debate this month because it is World Heart Month. Back-Bench debates are an opportunity to have these conversations and to raise concerns.

Cardiovascular diseases include conditions that affect the heart and circulation, including high blood pressure, stroke and vascular dementia, which I will refer to collectively in the debate as CVD. Over the past six decades, huge strides have been made in improving outcomes for those affected by CVD, with the annual number of deaths falling by around half since the 1960s in part thanks to decades of medical and scientific breakthroughs. That is why research is just so essential.

Today, more than 7 million people are living with heart and circulatory diseases in the UK, and they cause more than a quarter of all UK deaths. In 2022 alone, over 39,000 people in England died prematurely of cardiovascular conditions. That is, on average, 750 people a week. Just to provide a sense of scale, that would fill the Chamber two times over. Despite the premature death rate for CVD continuing to fall by 11% between 2012 and 2019, sadly it remains one of the UK’s biggest killers. The British Heart Foundation is doing a lot of work to raise awareness of waiting lists going up for heart tests and treatment. We need to ensure that we tackle that head on. There is no room for manoeuvre on this. Let us keep moving forward to make a difference.

More analysis is needed. From lifesaving research by the British Heart Foundation, we know that the causes of premature deaths from CVD are multifaceted and complex. The NHS long-term care plan intends to look at many of those areas, but I call on the Government to be bold and consider co-ordinated action to address the issue in three ways. I urge them to prioritise heart care within the NHS to accelerate vital care; to ensure better protection from heart disease by addressing the drivers and underlying health conditions, such as obesity and smoking; and finally, to create a research and development ecosystem for breakthroughs, treatments and cures.

I welcome the significant work already under way through the Government’s major conditions strategy and the inclusion of cardiovascular disease in it. The interim report, published last summer by the Department of Health and Social Care, made clear the scale and urgency of the Government’s priority to address this issue. Urgency is absolutely key here. Around 80% of cases of CVD are attributed to modifiable risk factors such as high blood pressure, obesity, poor diet and smoking, making CVD largely preventable through a number of lifestyle choices.

Politically, I am not one who thinks that the state should intervene and stop people from being able to enjoy their lives, but I think education is key. Education can come through many different means, including engagement with the NHS and GPs providing advice. It is not about the state stopping people making lifestyle choices, but it is fair enough to let them know what those lifestyle choices might lead to, and what can make a big difference to them and their family.

Nearly two thirds of adults in the UK, around 64%, are overweight or living with obesity. Up to 8 million people have either undiagnosed or uncontrolled high blood pressure. From my own personal experience, I admit that I knew I was not going to be running in the Olympics any time soon—I cannot exactly describe myself as an Adonis—but while I knew I was slightly overweight, I thought I would be okay. I thought that these things do not happen to somebody at the age of 47. Like most of us, I thought these things happen to somebody else. That is the way our minds work. This was a wake-up call for me, and that is why I want to make a wake-up call to others from this wonderful platform of the House of Commons Chamber. Do not assume that it is all okay. Get checked out and make sure that you watch out for the signs.

I therefore welcome the Government’s ambition to halve childhood obesity by 2030, and to help adults reach a healthier weight through a range of preventive measures to empower people to take control of their own health. Of course, everyone has different ways of doing that. I will not share my own dietary habits, because I am sure that some dietician will watch this and tell me I have got it totally wrong, but I have lost about 2 stone in the past four or five months. I did not do it by fasting—I know the Prime Minister does his fast each week, so I will not comment on that—or by adopting a fad diet; I simply made some small changes in my lifestyle and the way I live my life.

Like many people, we as Members of Parliament work long hours. My father was a lorry driver, and I am proud of the long hours he worked and the work that he did to bring me up. Our job here is not particularly physical, but it does involve long hours and is quite sedentary at times, and the same probably applies to the jobs of a great many people throughout the UK. Being mindful of that, and going for a walk and getting a bit of exercise, can make a big difference.

The NHS long-term plan sets out the Government’s determination to prevent 150,000 heart attacks, strokes and dementia cases over the course of 10 years. I welcome the focus on early intervention to help people live longer, healthier lives, but we all know that smoking is still the single leading behavioural cause of preventable death in this country. I very much support the Government’s desire for a smoke-free generation by 2030, and I am glad they are pressing on with a tobacco and vapes Bill to ensure that children who are now 14 or younger—that is, anyone born on or after 1 April 2009—can never legally be sold tobacco products.

Addressing lifestyle concerns and identifying underlying conditions earlier could help to prevent tens of thousands of heart attacks and strokes, and could support the Government’s ambition to increase healthy life expectancy by five years by 2035, but I think it means more than that. To me, it means that a child will grow up seeing their father or their mother. It means that friends and families can see a loved one reach the age at which they can call that person a grandparent, or that person can see them graduate. This, for me, is not just about Government policy; it is about the impact on real people who can be helped to lead a positive life.

When we talk about heart attacks, heart disease and the other issues we are discussing today, we are of course talking about premature deaths, but for most people who are affected those conditions constitute a restriction on their lives, and I want to ensure that we improve that situation for everyone in the country. I am proud to say that the UK continues to lead the way in medical research, establishing innovative methods of early diagnosis and effective treatment.

As many Members will know, I campaigned vigorously with West Hertfordshire Teaching Hospitals NHS Trust to secure the necessary funding for the new hospital in Watford, and it was a proud and important moment when we did. One reason I supported that so strongly was the incredible work I saw being done at Watford General Hospital, especially in relation to the virtual hospital programme. It has led the way in showing that there are other ways of supporting people’s health, particularly at home, and adopting the idea of using technology and data to help improve people’s lifestyles. The beauty of the modern age is that many apps can give people guidance on their health. They have Apple watches or Fitbits or whatever else is out there; I do not want to go down the route of one particular brand. We are now able to track so much more of our health, but I think we need more education on what that data means. We can all see our heart rates, but what is the actual impact on people’s lives?

Virtual care is important in this regard, but—I will not go too far down this route, Madam Deputy Speaker, because I think it is for a different debate—I have long argued for what I call data donation. At present someone who sadly loses their life may donate an organ, but if we could donate our lifestyle data throughout our lives, the NHS and other organisations could start asking themselves whether they could, for instance, cure cancer by using that data, which would be anonymised, with all the necessary checks and balances to ensure that it was done well.

I am conscious of the time, and I am sure that I am going over my allocated period, but I want to highlight the fact that despite all the developments, CVD continues to have an impact on the wider economy, costing an estimated £21 billion annually in England alone. As I say, behind every figure is a person or a family who have been deeply affected by these conditions. As part of this process, I was fortunate to work with the House of Commons Chamber engagement team, who reached out to constituents across the country to share their own experiences in preparation for this debate. I believe that the correspondence should be in the Library; if not, I will make sure that it is shared with colleagues and put online. One respondent really moved me. They said that their daughter

“has half a working heart; she’s had two open heart surgeries and will need another. If it hadn’t been detected early, she wouldn’t be with us today.”

That is a life, an ambition and a future that is still there because of the support that has been given.

I know that I am doing a bit of a plug for the British Heart Foundation today, but one of the other comments, which rings true with my experience, was that the

“British Heart Foundation has a brilliant website for facts, and the consultant team we are under at our local hospital are fantastic.”

There were many quotes from people sharing very similar stories. A common concern, though, was about aftercare following surgery or medical treatment and the effects that people’s conditions have had on them mentally and socially. From my own experience, I have to admit that I suddenly started to feel twinges all the time and think, “Is there something wrong with me? Is it happening again?”

My experience is that within two weeks of having a heart attack, I promised that I would go to a local event; I did not want to let people down. I remember going to it on a searing hot day. I was genuinely frightened about going out in the heat with people and not knowing whether my body would still work in the way I hoped it would. I am glad I did it, because once I had gone through the experience of being there and realising that I could still be me, I was able to overcome that and continue to work as safely and as best I could as I recovered.

However, not everybody gets that opportunity. When someone has had a physical illness, particularly when it affects the heart, it is easy for them to suddenly worry that they do not have control over themselves, and they do not know what might happen next. I must admit that there have been many times when something has twinged and I have thought, “Is this a heart attack again?” Thankfully, it has not been, but aftercare is absolutely essential. We can fix the body, but helping to support the mind through that psychological process is absolutely essential. I know that colleagues in the House will have far more powerful stories about their experiences than mine, and I look forward to hearing them later.

This is about multidisciplinary care that does not end when the patient leaves the hospital. It is about supporting their full recovery and helping them with some lifestyle changes. I have to admit that the cardiac rehabilitation team I worked with were phenomenal. When I was extremely concerned, they would put my mind at rest, which meant that I was better physically and mentally. I therefore ask the Minister whether consideration will be given to offering counselling services and mental health support to those affected by heart and circulatory conditions.

As I have said, heart and circulatory diseases cause a quarter of all deaths in England, amounting to over 140,000 each year, 480 a day or one every three minutes. Sadly, in the time that I have spoken today, five people will have lost their lives. I therefore call for urgent action to do more to protect our hearts. By prioritising the right action and supercharging the progress that has been made on addressing heart and circulatory diseases, we can improve the nation’s health, grow the economy and give people hope for a brighter, healthier future.

--- Later in debate ---

[Dame Andrea Leadsom]

Absolutely. I am happy to do that, and I would encourage all local authorities across the country to make best use of the funds that are available to them.

Let me turn to mental health and counselling services. As my hon. Friend the Member for Watford discussed, surviving a heart attack can have significant psychological impacts on individuals and their families, and I am grateful to him for sharing his own experience so powerfully. Integrating NHS talking therapies with physical health services can provide better support to people with combined physical and mental health needs, including people with cardiovascular disease.

[Mark Tami]

The right hon. Lady is making an important point. This should not be a bolt-on. It should be part and parcel of the treatment. We tend to address the physical side of the illness, open the door and away we go, and we do not ask people about some of the issues that they are struggling to cope with.

[Dame Andrea Leadsom]

I completely agree with the right hon. Gentleman. As part of the NHS long-term plan, all integrated care boards are expected to expand services locally by commissioning NHS talking therapies services integrated into physical healthcare pathways. I encourage anyone experiencing symptoms of depression, anxiety or post-traumatic stress disorder, even a long time after the event, to reach out to their GP or NHS talking therapies for support.

To conclude, I thank my hon. Friend for raising such an important issue. Across the House we all share the ambition to bring down premature deaths from heart and circulatory disease. Specifically, this Government aim to prevent 150,000 heart attacks, strokes and dementia cases in the next five years. Prevention is not only kinder but so much cheaper than cure.

Childhood Cancer Outcomes

Mark Tami Excerpts

Tuesday 17th October 2023 Commons Chamber

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

Thank you, Sir Roger, for granting me this important Adjournment debate following September’s Childhood Cancer Awareness Month.

I know that many of us have experienced the suffering of a loved one with cancer, but there are very few of us who have had to endure the unimaginable pain of seeing your child suffer with cancer and, worse, losing a child to cancer. Yet cancer remains the leading cause of death by disease in children and young people, with 490 cancer deaths in the UK each year. That is 490 lives lost and families forever changed. The lack of a bespoke, stand-alone children’s cancer strategy leaves those children with aggressive cancers even more vulnerable.

In the short time I have this evening, I want to focus my comments on a little boy, a “tough cookie” from South Shields called Ethan Adams. Ethan attended the dentist with toothache in November 2020. The dentist treated him for a tooth infection, but Ethan was still not right, so he and his family returned to the dentist and Ethan was given some antibiotics. A week later, he developed a lump on the roof of his mouth. The dentist thought that this was an abscess because of infection and removed his tooth, but Ethan continued to be unwell. He was referred to an oral specialist at Sunderland Royal Hospital and, after an emergency MRI, the family were told that it was a benign tumour and to expect a follow-up call in a few weeks from the Royal Victoria Infirmary in Newcastle.

The very next day, the family received an urgent call asking them to head to the accident and emergency department as soon as possible. That is when the worlds of his mam and dad, Tracey and Mark, crashed. They were told that Ethan had an aggressive cancer and that it was eating up through his skull and pressing against his brain. Ethan was diagnosed with rhabdomyosarcoma, often referred to as RMS. A large tumour was present in his face, pushing through on to his brain. A large tumour was also found attached to his spine and traces were visible in his lungs and bone marrow.

His family were given a glimmer of hope when they were told that Ethan’s diagnosis was embryonal RMS, the lesser of two evils, and that the medics could shrink the tumours, but they were not sure that they could stop it coming back due to the aggressive nature of the cancer. Little Ethan had 32 days solid of chemotherapy and radiotherapy. He did not complain once. After going through so much, the family felt hopeful for a good result, but after an MRI they received the heart-breaking news that the cancer was buried in layers of his brain and it was terminal.

The family made sure that Ethan spent his final days carrying out his bucket list of all the places that he wanted to see and all the things that he wanted to do. This very determined independent little boy, even at his weakest and when losing his sight, would insist on climbing the stairs at home instead of being carried. On 5 August 2021, just a week after his ninth birthday, Ethan passed away at home, with his mam Tracey, his dad Mark, his sister Ellie and his brother Evan.

Ethan loved Yoda, Sunderland football club and the colour gold. He loved entertaining people and was a mischievous and funny kid with a big heart. Even when unwell in hospital, he was found sharing his toys and helping another little boy. He was all about friends and family, and talked about being a daddy himself one day. His school, Harton Primary, has named a sports hall after him and has buddy benches in each yard. His grave, which his brother calls his forever home, has on it “Ethan, a friend to all”. Ethan left a hole not just in his family’s and friends’ lives, but in our community. South Shields will never forget him.

Ethan’s family, in an effort to ensure that no one else ever has to go through what Ethan did, have become part of the charity Alice’s Arc, founded in memory of Alice Wakeling, who lost her life to RMS aged seven. The charity has created a community of families through Arcs. Alice’s Arc, Ethan’s Arc and all the other Arcs represent children who have had or are fighting RMS. The Arcs exist to find a cure, to find kinder treatments for RMS and to raise awareness. However, I gently say to the Minister that they should not need to exist; such charities exist because the state has failed them, and it continues at times to fail these children. As Mark said, it should not be left to charities to fund research.

The hon. Member for Gosport (Dame Caroline Dinenage) held the first ever debate on childhood cancer in this Chamber back in April 2022. I pay tribute to her and all hon. Friends and Members who took part in that debate. It was a rare moment of this House coming together, regardless of politics, in unanimous agreement that there needs to be a children’s cancer strategy combining early diagnosis, research funding and increased training for GPs and healthcare professionals.

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

rose—

[Jim Shannon (Strangford) (DUP)]

rose—

[Mrs Lewell-Buck]

I will give way to my right hon. Friend first.

[Mark Tami]

I am a parent who was told the devastating news that my son had leukaemia, and he subsequently had to have a stem cell transplant. It is devastating news. Fortunately, we were lucky, but something I have campaigned strongly on is the fact that we address the physical side of the illness, but not the psychological support that those children need, and that they might need in later life as well. We need a more rounded approach. People should not have to go out there and seek that support as something extra; it should be part of the overall treatment path.

[Mrs Lewell-Buck]

I thank my right hon. Friend. I know he has spoken movingly before in this Chamber about his son Max. He is right that, for those who are lucky enough to recover from cancer, there is always an after-effect; it remains with them for life and there should be more support. I give way to my other hon. Friend.

Countess of Chester Hospital Inquiry

Mark Tami Excerpts

Monday 4th September 2023 Commons Chamber

[Steve Barclay]

To provide some reassurance to my hon. Friend, the Public Interest Disclosure Act 1998 was strengthened in 2018. Obviously, that is post the appalling events covered today, but that Act has already been strengthened. The freedom to speak up guardians have also been implemented since these events, and their role has been strengthened further in the guidance. Significant work has also been done on the role of the child death overview panel and the role of data through the Getting It Right First Time team, picking up data where there are concerns. A significant amount of work has been done on that, but of course through the inquiry, we also need to interrogate more clearly why the concerns raised by clinicians were not acted on by those in leadership positions. I am sure that is something that the judge will want to test in significant detail.

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

I certainly welcome the Secretary of State’s change of heart on the statutory inquiry: that is vital to get the answers that all the parents deserve. It is also vital that any other parents who have concerns about the treatment of their child when Letby was working at Chester and Liverpool have those concerns fully investigated or reinvestigated by the police, so will the Secretary of State ensure that the Home Secretary provides whatever resources the police need to make that happen?

[Steve Barclay]

Given the gravity—the seriousness—of the cases before the House, this issue is something that all Ministers are very seized of, but I will of course relay the right hon. Gentleman’s point to the Home Secretary. From talking to the team, I know that specific funding had been allocated for that in response to the seriousness of these cases, but of course, I will relay that point to my right hon. and learned Friend.

Stem Cell Transplant Patients

Mark Tami Excerpts

Monday 12th June 2023 Commons Chamber

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

I am very grateful to have been granted today’s debate on the impact of the cost of living crisis on stem cell transplant patients and their families. I thank all the Members who have stayed for this evening’s debate, and I should put on record that I am chair of the all-party group on stem cell transplantation and advanced cellular therapies.

Many Members will be aware that a stem cell transplant is an extremely intensive treatment for blood cancer and blood disorders. Receiving a stem cell transplant is a long and difficult journey, and not without considerable risk to the patient. Despite this, stem cell transplantation is an absolutely vital treatment option. For many patients, it may be the last chance to cure their disease.

Overall, an average of fewer than 5,000 people receive a stem cell transplant every year. As many in the House will know, in 2008 my son Max was one of the children to receive a transplant, and I am pleased to be able to tell the House that, following the completion of his MA at the University of Manchester, he will be starting the first day of his job tomorrow. Max responded well to treatment, after a very bumpy road, but I cannot overstate the sheer terror and mental anguish of that experience for me and my family.

[Colleen Fletcher (Coventry North East) (Lab)]

I congratulate my right hon. Friend on securing this debate on a subject which, as he knows, is very close to my heart as my husband also had a stem cell transplant in 2014. It is often a last chance, and I know from personal experience with my late husband that it is essential for stem cell transplant patients to attend every single one of the many hospital appointments they have each week. Missing just one appointment can have serious, even life-threatening, consequences, which we experienced ourselves. So it is extremely concerning that due to the impact of the cost of living crisis, many patients are struggling to pay for travel to and from their hospital. Often these specialist centres are many miles away and they cannot use public transport because of the threat to their compromised immune system. So does my right hon. Friend agree that a dedicated travel fund is vital to ensure that stem cell transplant patients can attend every single appointment?

[Mark Tami]

My hon. Friend must have read my speech, because I will develop precisely that theme, as it is very important. When we went through that very difficult time, we were fortunate financially in that I had a well-paid job, being a Member of this House. I also had a very flexible and understanding employer; I was allowed the time off to be at the hospital. We had a car. We could afford to stay in a hotel if necessary and to eat out. Saying that, we still managed to build up debts, but we were in the hospital off and on for about two years and we saw many people who were not in that fortunate position—single mothers, people without a car who had to rely on public transport, people without a family network to support them, and people without that financial back-up to get through what is not only a traumatic process but a costly process for the family of the person being treated.

[Mr Clive Betts (Sheffield South East) (Lab)]

First, let me declare my interest: I am vice chair of the all-party group, and also a recipient of a transplant six years ago. My right hon. Friend is absolutely right on this point. When I was having my chemo, the hospital kindly arranged it so that for several weeks I could go in on a Monday morning, then come down here by train, and go back on a Thursday and have my second dose. Also, throughout the whole process I was able to do my job on email. The nurses used to laugh at me when I had my stem cells harvested—my right hon. Friend will know about that; it took me three goes, four hours at a time—because during that process I would carry on doing my emails. They used to laugh at me, but they understood the process. That is very different from the situation facing someone who has to go to work, perhaps in a manual job on a low income, who loses out right through the process. We must reflect on how we can better help people in those circumstances.

[Mark Tami]

I thank my hon. Friend for making that very important point. I was talking about how much the costs were back then, but clearly people going through the process now are experiencing what we term the cost of living crisis, which is affecting everyone.

[Jim Shannon (Strangford) (DUP)]

rose—

[Mark Tami]

I see that the hon. Member—I will call him my hon. Friend—wants to intervene.

[Jim Shannon]

I congratulate the hon. Gentleman on bringing forward the debate. I spoke to him before, because I realised that he was bringing forward an issue close to my heart, not personally but for my constituents. The Anthony Nolan charity does spectacular work throughout all of the United Kingdom of Great Britain and Northern Ireland, including my constituency of Strangford.

The most recent statistics show that 70% of patients—some of them are from Strangford—have considered returning to work earlier than advised due to financial concerns, jeopardising their recovery. Does the hon. Member agree that there is an incredible delay in assessments and decisions for social security at the moment, and that if more effort were made by the Government and the Minister to ensure that they were done on a timely basis, some undue stress would be taken off people awaiting transplants? Ultimately, they would not feel that they had no choice but to go back to work when clearly they should not do so.

[Mark Tami]

I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from.

As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end. Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend for giving an excellent explanation of the position and for succeeding in getting an Adjournment debate on the issue. Does he agree that people are hit three times over? They are hit while having the treatment, often hit by reduced income when they have finished their treatment and hit by extra costs from needing heating and food as well as other things, especially now we face such a cost of living crisis.

[Mark Tami]

Absolutely. My hon. Friend makes an important point. Patients must continue to take those extra measures for fear of getting an infection that could be life-threatening. As she said, they are advised to keep warm at all times, to sterilise drinking water and to wash their clothes more often. With the surge in electricity and gas bills, those extra costs are really hitting patients hard.

Another part of the transplant process is having what is known as a clean diet, which basically means that the patient needs to know exactly where their food comes from and how it was cooked, so they tend to cook it themselves, which in the main makes for a more expensive process. Ready meals are not really an option. If someone very kindly prepares something, they cannot take the risk because they cannot be 100% sure where it has come from. Clearly, the record food prices we are now seeing make the situation far worse. We hear on the news that people are going for cheaper options.

--- Later in debate ---

Motion made, and Question proposed, That this House do now adjourn.—(Scott Mann.)

[Mark Tami]

Many people feel that they have to go for cheaper options, but patients cannot do that. That is not an option for them. Patients are going to food banks, but they still have to be very, very careful.

My hon. Friends touched on travel costs, which are a major concern for stem cell transplant patients and their families. In the weeks after leaving hospital, most patients need to attend follow-up appointments. I remember from our own experience that that was twice a week to begin with, but it is sometimes more often. It went down to once a week and then so many times a month. Hopefully, the process begins to wind down over a number of years. So there are costs, but it is very important that the appointments are kept. Alongside that—again, this is from personal experience—there are issues such as graft versus host disease, where the donor’s stem cells attack the patient’s body cells after transplant. That is a condition that can carry on and flare up for many years. If it gets out of hand, it can get to a life-challenging position for the patient.

Patients therefore face especially high fuel and hospital parking costs. Those without access to a car must rely on family or friends, or pay for a taxi. Others have no option but to use public transport, with all the associated risks of picking up an infection. Adding to travel costs is the fact that specialist transplant centres are often located miles away from patients’ homes, as my hon. Friend the Member for Coventry North East (Colleen Fletcher) made clear. That creates a problem in itself. I think we all applaud the use of specialist centres, because the evidence shows that that is where the specialists are and where we get the best care, but we have to help and support people to get to those specialist centres. When we were in Alder Hey Hospital, there were patients from the Isle of Man. Clearly, we are not going to have a specialist centre on the Isle of Man, even if we had the money to do that. It just would not be practical. So we have to support people to get to the specialist centre and then support them with accommodation. The Ronald McDonald houses, which are available at a number of places, really do help families with a sick child.

Given the intensity of the treatment and the long recovery period, it is not surprising that countless patients find that they either have to give up work for many months and sometimes longer, or that their carers have to take reduced working hours or even unpaid leave to shield at home and help the patient through their recovery period. Going back to work after a transplant is not always possible or safe for everyone. A lot of patients will experience long-term ill health, and the cost of being out of work is significant for everyone. Older patients may well end up taking earlier retirement, with knock-on implications even if they have a good pension. Some patients may be lucky and have a company sick pay scheme. Others may have to rely on statutory sick pay, but that can only be claimed for up to 26 weeks, and recovery often takes longer. Not all companies have the greatest sick pay scheme, and even then it is only a safety net for a period of time. Some patients feel that they will be forced back to work much sooner than they should be. Even when an employer is understanding to begin with, the pressure starts to build after six or 12 months. It is not only the employer who is affected. Perhaps that employer has to get somebody else in, or the issue starts to cause problems with the rest of the workforce. Even if the employer is very understanding, there is only a period of time that they can bear the cost. We need to support people in that position.

Clearly, undergoing a stem cell transplant can cause a dramatic reduction in household income, and, compounding that, the cost of living crisis is having a disproportionate effect on patients and their families. The massive rise in inflation has driven up the cost of heating homes, buying food, travelling to and from hospital and paying for hospital parking—that is if people can even find a parking space in the first place.

A recent survey by the charity, Anthony Nolan, gives us an indication of the extent of the financial impact of stem cell transplantation on patients and families. Seventy per cent of transplant patients or carers feel that they must either reduce their working hours or, in some cases, give up work altogether. Almost 40% of households earn less than £20,000 a year after a transplant. That is significantly lower than the national average of more than £32,000.

To try to manage the astronomical rise in costs, more than 40% of patients have borrowed money, taken on debts, had to move, or refinance their homes. We know what the mortgage market is doing at the moment, and that is an extra worry—an extra burden—for people who are effectively being forced into this situation. We even hear reports of people turning to loan sharks to try to fill the gap in their income. Anthony Nolan found that 70% of patients had considered returning to work earlier than advised due to financial concerns.

A carer whose child is undergoing a transplant said:

“We now rely on food banks and friends. We cannot use the car other than for hospital visits. Our costs have massively increased, while our income has drastically fallen.”

This is not a one-off case. This is a common theme that comes up time and again.

Anthony Nolan is regularly hearing from patients who are struggling to afford even the basics, and the situation is getting extremely desperate. Sixty per cent of respondents told the charity that they have struggled in the past year to afford to heat their homes to stay warm, with some patients experiencing such severe damp in their homes that they have had to resort to sleeping in their cars. Almost half have struggled to purchase good food and, consequently, patients are increasingly turning to food banks, and clinicians are seeing higher rates of infection and even malnourishment.

One carer whose daughter had two stem cell transplants described how she had cut back on costs, so much so that she now walks 12 miles a day to take her children to school. In her own words:

“The rising cost of living has crucified me”.

Almost half of patients struggle to afford travel to and from hospital appointments. As my hon. Friend the Member for Coventry North East (Colleen Fletcher) said, shockingly, some patients have reported going without food and avoiding putting the heating on to pay for that journey. One patient paid for 280 miles of fuel for a round trip, and another reported a £140 cost of a taxi ride. It is particularly striking that half did not struggle to afford such things before the current cost of living crisis.

Social workers up and down the country are supporting transplant patients in increasingly acute situations. The charity, Anthony Nolan, states that the crisis is the worst it has seen in 30 years. At last month’s meeting of the APPG we heard from Cheryl Bell, who is an incredible social worker based in Newcastle who specialises in supporting stem cell transplant patients. Cheryl told us that suicides among stem cell transplant patients are “going through the roof”.

The consequences of the cost of living crisis for stem cell transplant patients are marked and severe. Some 94% of patients report that their physical health is negatively impacted by the crisis. As has been said, some patients even consider postponing a lifesaving stem cell transplant because they are worried that they cannot afford to be out of work. To reiterate, patients who might otherwise die without a stem cell transplant are seriously considering whether they can simply afford to receive that treatment. No one should have to choose between heating, eating and treatment. It is not just about the cost of living; it is as serious as the cost of survival.

Anthony Nolan has been overwhelmed by the rise in demand for financial assistance. Calls from patients to its helpline about money worries have surged more than 350% in just one year. It launched an emergency appeal to provide a dedicated cost of living fund to help ease worry about household bills going through the roof but, unfortunately, it could help fewer than 200 patients. Ultimately, it should not be for charities—or, often, the generosity of the British public—to plug the gap.

What should Government do to help patients and their families who are especially impacted by the cost of living crisis? The Chancellor introduced some measures in response to the cost of living crisis, but more than half of patients said that the financial support they received has not covered the extra costs they faced “at all”. I am sure that the Minister will refer to the energy price guarantee as a key source of support. I certainly welcome that intervention from the Government but, unfortunately, it has not gone far enough to meet the rapidly increasing need among stem cell transplant patients for financial support with their energy bills. Likewise, many stem cell transplant patients are not eligible for the time-limited disability cost of living payments. That means that too many patients are falling through the gaps, without the support they need for their recovery.

I appeal to the Government to offer targeted support to this group as a matter of urgency. First, I ask that the warm home discount scheme be extended to all stem cell transplant and CAR-T therapy recipients. Given that 60% of patients struggle to afford to heat their homes to stay warm, £150 off energy bills across the winter would undoubtedly be a potential lifeline for many households. In the long term, it is important that the Government look at how to secure our energy security. That needs to stay a priority and not drop down the list in years to come, so we do not face such a situation again.

Secondly, I back Anthony Nolan’s proposal for a patient travel fund for stem cell transplant and CAR-T therapy recipients in the UK. Such a fund would—and should—cover all costs associated with safe travel to and from hospital for treatment. A Government healthcare travel costs scheme exists in England, but it has a high eligibility threshold, greatly limiting the number of patients who can receive it. Typically, payments are not made in advance, meaning patients can be significantly out of pocket while they wait for a refund. For a lot of people, that is not feasible.

What is more, the scheme can be burdensome to access. I know that when someone receives the shock news about a loved one and is dealing with that, the last thing they want is to be burdened with forms and the complexity of going through a time-consuming process. As I have said, fewer than 5,000 people receive a transplant in the UK each year, so such a fund would not represent a significant cost to the Treasury, but it would make a massive difference to patients’ lives.

Take it from Claire, who underwent a stem cell transplant and CAR-T therapy in London after relapsing in 2019. Speaking of her experience with travel costs, she said:

“During my CAR-T treatment I had to travel hundreds of miles for vital hospital appointments at the huge cost of £160 per trip. Living so far away meant I had to pay for overnight stays in hotels, which was really hard to budget for. On top of that, hospital parking costs for family and friends visiting when I was an inpatient were sky high. There was no financial help for me to pay for transport costs when I most needed it.”

I hope the Minister can see that patients are raising consistent concerns.

Finally, I call on the Government to guarantee that all stem cell transplant and CAR-T therapy recipients receive the benefits that they are due and for which they are eligible in a timely manner. I know this is an issue for all benefit recipients, but people in this condition need to receive those benefits when they need them: straightaway. Macmillan has done an incredible job shining a light on the waiting time for personal independence payments, with the average still standing at a shocking 14 weeks. I echo its calls for the Government to cut that distressingly long waiting time without delay. It has never been more important to ensure that everyone has access to the financial support they are entitled to, and not leave vulnerable people stranded. That must be addressed as a matter of urgency. The Government need to ensure that the people who need the benefits the most get them the soonest.

To conclude, it is clear that the current benefits system is not sufficient to tackle the unprecedented cost of living crisis and the rapidly rising need for financial support among the most vulnerable in society. Many years ago, when I was going through the process with my son, the system for supporting patients was not right, and it is not right now—it has to change. While charities such as Anthony Nolan do an incredible job supporting patients, they should not be left to fill the gaps that Government policy leaves. Urgent action needs to be taken. Ultimately, stem cell transplant and CAR-T therapy patients have only one chance of recovery. They need extra support from the Government now, to see them through the cost of living crisis and enable them to realise that chance that they deserve.

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)]

I congratulate the right hon. Member for Alyn and Deeside (Mark Tami) on securing this important debate, and I congratulate the other hon. Members on speaking interestingly about their personal experiences in this field. As chair of the all-party parliamentary group on stem cell transplantation and advanced cellular therapies, the right hon. Member for Alyn and Deeside speaks from particular personal experience and I think everyone will have been delighted to hear the wonderful update about Max.

For people living with blood cancers and blood disorders, stem cell transplants are a potentially life-saving treatment. That is why we continue to invest in improving clinical outcomes and access to transplants. Since 2011, Government funding of more than £28 million has made possible the establishment of a unified stem cell registry, a cord stem cell bank, and a strategy to recruit donors to meet the needs of our increasingly diverse population. Over the next three years, we are investing £2.4 million more to increase the resilience of the UK stem cell supply and to address health inequalities with targeted campaigns to recruit donors from ethnic minorities. The right hon. Gentleman mentioned Anthony Nolan, which gives me the opportunity to thank that charity for its tremendous work with the NHS to build up the stem cell register.

As we know, the very nature of these transplants means that patients are among the most vulnerable in society. They are left with seriously weakened immune systems, for all the reasons the right hon. Gentleman has given. To help households and individuals to cope with the rising costs of living, we are providing some of the most generous cost of living support in Europe, worth an average of £3,300 per household this year and last. As well as the action on energy prices, that includes payments to more than 8 million UK households receiving eligible means-tested benefits, and to 6 million people across the UK in receipt of eligible “extra-costs” disability benefits.

For those needing extra support, the Government are providing an additional £1 billion to allow the extension of the household support fund in England this financial year. Our energy price guarantee is helping millions of people to deal with rising energy costs, and, as the Chancellor announced in the spring Budget, it will be extended, at £2,500, for an additional three months from April until the end of June. That means that by the end of June we will have covered nearly half a typical household’s energy bill, with a typical household saving about £1,500.

The right hon. Gentleman rightly raised the importance to patients of keeping warm, and the warm home discount is a key policy in our programme to tackle fuel poverty and help low-income households with the cost of energy, whatever the reason for their low incomes. It gives low-income and vulnerable households throughout Great Britain an annual £150 energy bill rebate every winter, and since it began in 2011 we have provided more than £3.5 billion in direct assistance for households. The scheme obliges participating suppliers to provide rebates for eligible low-income and vulnerable households.

In order to target fuel poverty better and provide the vast majority of rebates automatically, we have expanded and reformed that scheme for England and Wales from 2022-23 onwards. That includes those receiving universal credit, for which stem cell transplant patients may well be eligible. Depending on their specific needs, stem cell transplant patients may be entitled to financial support to contribute towards their extra costs, which may include the personal independence payment. PIP can be paid in addition to the other financial and practical support that may be available through universal credit.

The Government are committed to ensuring that people can access this financial support in a timely manner. While waits are still too long, they are coming down dramatically and we are constantly improving the service. Claimants are kept informed and are updated at each stage of the process—for instance, through a text message service—and in most instances any awards can be backdated to the date of the claim.

I know—not least because of the right hon. Gentleman’s comments this evening—that rising travel costs represent a significant burden for stem cell transplant patients and their families. Recipients of certain benefits, including the personal independence payment, can apply for extra help with travel costs, such as a disabled person’s railcard, a blue badge or a vehicle tax reduction. NHS trusts can also exercise discretion to provide accommodation and other support, including transport, depending on local and individual patient circumstances. Depending on their financial circumstances, patients may be able to access extra help with travel costs, such as the NHS low-income scheme and healthcare travel costs scheme.

[Mark Tami]

Does the Minister accept that if we require patients to attend specialist centres—which I fully support; indeed, perhaps we need to go further in that regard within the NHS—we should think about how we can help those who have to travel long distances to cover their costs, given that they cannot receive that treatment at the hospital down the road?

[Neil O’Brien]

I would agree with the hon. Gentleman. I was talking about one scheme, the healthcare travel costs scheme, but patients might also be eligible for non-emergency patient transport, on which we spend about £500 million a year across England. We will continue to look closely at the future of that, not least because of the hon. Gentleman’s comments this evening.

Cancer Care: Young Adults

Mark Tami Excerpts

Wednesday 8th June 2022 Westminster Hall

[Julie Marson]

The hon. Member is quite right. Early diagnosis saves lives. I will mention some of the figures that prove that using technology and the right processes and procedures during that diagnosis phase is critical to saving lives. These are real people and real lives. I absolutely agree with the hon. Member.

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

The hon. Lady has done excellently in getting this debate today. I have done a lot of work with young adults and children, and quite often with children bruising, rashes and tiredness are dismissed. Parents are told, “That is just children” or “That is just the way they are.” The danger is that conditions get picked up far later than they should be. We really need doctors to start thinking outside the box and looking at what these conditions could actually be, rather than just saying, “Oh, it is all fine.”

[Julie Marson]

I thank the right hon. Gentleman for his intervention. I will go on to talk about the danger of not expecting to find symptoms of cancer in children and young adults, and the terrible consequences that delays and misdiagnoses can have, as they did in Jess’s case—it is too often the case.

I want to talk about Jess, because to understand how important this is, and why the Brady family are so committed to this approach, it is important that I tell Jess’s story. In mid-2020, Jess was feeling unwell with abdominal and back discomfort. It was during the pandemic, and Jess was given an online consultation at her GP surgery, and prescribed antibiotics for a suspected kidney infection. Over the ensuing weeks she was prescribed numerous other medications, including more antibiotics and steroids. Jess contacted her surgery on more than 20 occasions in five months. None of the four GPs who provided her with a consultation—17 of which were conducted remotely—took her symptoms seriously. Her requests for blood tests were granted, but a raised D-dimer was dismissed after a preliminary scan, and not investigated further. Blood results showing poor liver function were left for a six-week follow-up review, which proved fatal.

Jess was told for months that she was suffering from long covid, despite two negative coronavirus tests. She was finally diagnosed with cancer following a private referral on 26 November. Her dependency on oxygen from that date meant that she did not leave the hospital or ever return home. Jess discovered that she had stage 4 adenocarcinoma with an unknown primary. It had spread throughout her body to her spine, liver, stomach, lungs and lymph nodes. Jess was a talented satellite engineer for Airbus. She had so much potential and so much life to live. Her loss has shattered her family’s world.

Devastatingly, had someone taken the initiative to closely review Jess’s case and examine the evidence, cancer screening would have been an obvious requirement. A consultant recently said to her parents:

“If a diagnosis cannot be made from initial tests then not enough tests are being carried out”.

In Jess’s case, a request to be referred to an ear, nose and throat specialist was laughed off. Letters written to the surgery listing her symptoms, including dramatic weight loss and vomiting, were ignored. Jess felt powerless and distressed. She tried so hard to be heard and taken seriously. It was heartbreaking for her family to watch her deterioration.

It is obvious really, but when people are desperately ill and at their lowest ebb, they do not possess the stamina to fight the system—nor should they have to. Jess’s age was a key issue. Many people, including GPs, do not expect to see, as the right hon. Member for Alyn and Deeside (Mark Tami) said, a young adult with cancer, and that affects their diagnostic processes and judgment.

Childhood Cancer Outcomes

Mark Tami Excerpts

Tuesday 26th April 2022 Commons Chamber

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

Leukaemia is the most common cancer in children. For most, the treatment will be chemotherapy and, more recently, the use of targeted therapies such as CAR-T. The treatment will take place over a number of years and there will be many bumps in the road in what is a very difficult journey.

I will never forget the phone call from my wife 15 years ago telling me that our nine-year-old son had leukaemia. For us, it soon became clear that the only route open to us would be a stem cell transplant. We were very fortunate that we found a donor for our son, but far too many children—particularly those from non-white backgrounds—are still not as lucky. There have been great improvements in recent years, but a lot more work still needs to be done.

The transplant process is not easy, involving radiotherapy and isolation to try to avoid infection as the immune system is so weakened, and then there are the post-transplant effects which, in the worst cases, can involve graft versus host disease, which can kill the patient, as well as infertility, premature menopause, fatigue, muscle problems, a higher chance of secondary cancers—I could go on.

We are making medical advancements, and some of the treatment is now far less severe than it was those 15 years ago. But that is the physical side of the illness; what of the psychological issues that children who have had cancer treatment will almost certainly face? About three-and-a-half years ago, I had a debate in this Chamber on this very subject, highlighting what I thought were the problems. Regrettably, those problems are still there today and, with covid, have arguably got worse.

[Chris Elmore (Ogmore) (Lab)]

A constituent of mine, Richard Case, lost his son Cian two years ago. Two years ago, I had a debate in this Chamber—the hon. Member for Winchester (Steve Brine) responded for the Government—on international research for children with childhood rare cancers, and looking at how the G7 and the G20 could focus on global research and innovation in tackling childhood cancers. Progress has been limited. Does my right hon. Friend agree that it is time that finding cures for childhood cancers was a global research priority?

[Mark Tami]

I agree, and I think that vital work needs to be carried out now.

Fundamentally, psychological support should not be an add-on. It is not something that we should have to seek or press for our children to receive; it should be part and parcel of the overall treatment programme. For many people, it is about coming to terms not only with the treatment, but with the fear that the illness could come back again. That is a hell of a pressure to be put on a young person.

Young people may also find it difficult to talk to their own families about some of these issues and the concerns they have. That is why professional counsellors and clinical nurse specialists can play an important role in this respect. Reintroduction into school, for example, can be a traumatic experience for young cancer patients, as well as for their classmates, because they might look very different from when they left the school. I remember a young girl telling me that the worst part of what had happened to her was not the treatment, but the fact that she lost her hair—coming to terms with that is very difficult.

[Tracey Crouch (Chatham and Aylesford) (Con)]

On that point, will the right hon. Gentleman take this opportunity to congratulate the Little Princess Trust, which takes donations of hair to create wigs for children? Quite often, it is other children who donate their hair to make those wigs. It is a great charity, and I hope that many people will acknowledge it.

[Mark Tami]

I agree. It is so important to help young people feel as normal—if we can use that word—as possible. I have always been struck by how important the hair issue, and having fit-for-purpose wigs, is to girls in particular—in some circumstances the wigs are not very good.

As has already been touched on, support should be available for family members of young cancer sufferers. I remember when everyone would phone up all the time and ask how my eldest son was, but no one would ask how his younger brother was. They were not being mean; it was just that their focus was on that child. During the whole treatment process, there is a financial cost to travelling to and from a specialist centre, and for some the choice is between employment or caring for their child. That is the choice that a lot of people have to make, so there are enormous pressures there. I found it particularly helpful to speak to a nurse from CLIC Sargent—now known as Young Lives vs Cancer—who would come round to give my son his treatment. She understood how you felt, and it was good to have an honest discussion with her about some of the issues you were facing.

I think we need to place psychological support on an equal footing with addressing the physical treatment of childhood cancers, with equal access to support, not as an afterthought or an add-on, but as part and parcel of the process, from diagnosis to dealing with the long-term effects.

Children’s Mental Health

Mark Tami Excerpts

Tuesday 8th February 2022 Commons Chamber

[Dr Allin-Khan]

I thank the hon. Gentleman for his intervention. Perhaps he would like to understand that some white groups from poor socioeconomic backgrounds have such outcomes but, by far and away, it is disproportionately weighted against black and minority ethnic groups as a whole in this country.

There was a crisis in child and adolescent mental health provision in this country even before the pandemic made it worse. The latest report by the Children’s Commissioner shows that demand for child and adolescent mental health services—CAMHS—increased in 2020-21, with one in six children likely to be suffering from a mental health condition, up from one in nine in 2017.

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

Does my hon. Friend agree that children and young people who have suffered cancer and had long spells of cancer treatment need mental health support, too? That should be part of the package. It should not be an add-on or something they have to search for; it should be part and parcel of their treatment.

[Dr Allin-Khan]

My right hon. Friend is absolutely right. Some children endure unspeakable circumstances that unduly affect their mental health in a way that we can never comprehend. It affects not just them but their family—their siblings and parents. I thank him for his intervention.

Medicines and Medical Devices Bill

Mark Tami Excerpts

Consideration of Lords amendments & Ping Pong & Ping Pong: House of Commons
Wednesday 27th January 2021 Commons Chamber

[Alex Norris (Nottingham North) (Lab/Co-op)]

It is a pleasure to resume proceedings on this Bill, and we are now very close indeed to the finish line. For us and, I think, for all Members, this has always been about patient safety and about making sure that people of the United Kingdom have the best access to medicines and medical devices. The exchanges so far have been of a high quality in both content and tone. As the Minister has characterised, the Bill started as a skeleton, but it is certainly thin no more. There is much in there that will make a significant difference to our country.

I have been proud to take the lead for the Opposition since the Committee stage, and I thank my predecessor in the earlier rounds, my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson), for setting the tone for us. I am also grateful to the Minister for her level of engagement and for giving us generous access to her officials and the Government in general throughout this process. The stages of the Bill through the Commons were of a high quality, and clearly considerable progress has been made in the other place, which we consider today. 

I welcome the Government’s concessions on the Bill, and I congratulate my colleagues in the other place, particularly Baronesses Thornton and Wheeler and Lord Hunt, on their hard work on and dedication to securing these vital amendments. That hard work will ensure that the Bill will promote patient safety and privacy, as well as proper consultation and scrutiny. I might even be mischievous enough to say that I tabled a number of these amendments in Committee, but I was unable to get them accepted at that point. I am therefore delighted to see them accepted at this stage.

We will support the Lords amendments where the Government have indicated their support, and where they have tabled amendments in lieu we will accept those as a reasonable compromise. I therefore do not intend to divide the House this evening. Similarly, I do not intend to speak to all 56 amendments, but I might cover a few of the pertinent major themes.

The Minister was right to say that in previous exchanges I challenged her to demonstrate that safeguarding public health and, critically, patient safety was uppermost, and that is reflected in Lords amendments 4 and 5. I knew from the outset that that was the Minister’s intention, and I think the amendments improve and make the Bill clearer, as well as future-proofing it for future Ministers and—dare I say it?—future Governments. It is important that that was done, and we appreciate that.

On Lords amendment 1, it is welcome that the Government have heeded the second recommendation in the Cumberlege review, and legislated for an independent Patient Safety Commissioner. We were lucky to have a review as seismic as that one, which crystallised many decades of suffering and pain for lots of people who had been crying in the darkness and ignored for a long time. That report was a cathartic moment, but it cannot remain just a report, and the fact that we had primary legislation that was the perfect vehicle for the independent Patient Safety Commissioner was a real blessing. I am pleased we were able to find a way to include that.

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

Does my hon. Friend agree that many of the people he said were in the dark often felt that they were on their own, and it was only when groups were set up that they realised otherwise? Many doctors were telling them there was not a problem.

[Alex Norris]

Yes, and I met as many of those groups as I possibly could. That commonality in the story of people often being ignored and left alone, or told that they were wrong, lying or making it up, added insult to the significant injuries that they had suffered. That collective action was a big part of people getting their salvation and securing that review which then vindicated them so strongly. That is so important. The presence of the independent commissioner will ensure that patient wellbeing is prioritised and there will be a voice for those citizens. That is an essential step forward to ensure that our wonderful national health care system is responsive and hears challenging messages, even if perhaps it does not always want to. That will give people a voice, which is important.

We welcome the amendments on transparency and accountability, and I pay tribute to the hon. Member for Central Ayrshire (Dr Whitford) for her leadership at other stages of the Bill. Frequent reporting will ensure that the system is monitored and accountable, which is good. With Lords amendment 31 the Bill will provide for the establishment of the independent statutory device expert advisory committee, to ensure that the regulation of devices is transparent, and that decision making is better structured and more accountable. That can only be a good thing. Making urgent regulation subject to positive affirmation, as in amendment (a) in lieu, will allow the regulatory system to respond to changing situations, while ensuring proper accountability and scrutiny.

As the Minister says, amendment (b) in lieu sweeps up and replaces the Lords amendments that relate to sunset clauses and clauses on the super-affirmation procedure. It was not quite what I was after, but I think it is a pretty fair deal. It is certainly more than I thought I would get—perhaps I should not say that before the amendments have been made. As a former trade union negotiator, I always thought that going in and getting 60%, 70% or 80% for our members was a pretty good outcome, so we will certainly take that. The five-year review is a good thing as it gives the Government more time—those arguments were well made by the Minister, and on reflection I think they are right.

At the root of this, the Secretary of State is acquiring significant powers, and it is right to review that as well as to have scrutiny down the line, and an opportunity for right hon. and hon. Members to determine whether the system might need consolidating or restructuring. That is vital to improve the quality of the regulatory system. I am really pleased that we got there, and with where we have arrived. I welcome the opportunity in Lords amendment 8 for the use of human tissue in medicine to be further regulated, thus preventing the NHS from being compromised by the trade in harvested organs, including those from ethnic minorities and political prisoners in authoritarian states. My hon. Friend the Member for St Helens South and Whiston (Ms Rimmer) will be pleased with that inclusion. It is her hard work that made that happen, and I commend her for it, as she battled away. She feels strongly about this, and what has come out is very positive indeed. As I say, I commend her greatly for that.

--- Later in debate ---

[Jo Churchill]

When taking a Bill through the House, we always hope that it will be one that hon. Members from both sides can understand, support and improve. Our intention to have a gold standard of medicines and medical device regulation in this country, and to put the patient at the heart of it, has been long understood and has very much formed the foundation stone of the Bill.

I am very grateful for the support of hon. Members here; the spirit of collaboration is how we get this Bill done now—today. I would like to address one or two of the questions that hon. Members brought up. I reiterate my thanks to the hon. Member for Nottingham North (Alex Norris). He was right when he said that the timing of the Cumberlege report was fortuitous. In this House, we have been able to make sure that patient safety has been addressed. He was also right to say that it was a collective effort, and he and other Members were right in saying that the Bill very much reflects the voice of campaigners who often feel that their voices go unheard. Today, they have not gone unheard.

[Mark Tami]

May I also mention the former Member for Pontypridd, Owen Smith, who is no longer in the House? He set up the all-party parliamentary group on surgical mesh implants, which did so much work to highlight this issue.

[Jo Churchill]

Indeed.

This has been a long time coming, and Members from both this House and the other place have been involved. I pay particular tribute to Janet Peck and Susan Morgan, the constituents of my hon. Friend the Member for Totnes (Anthony Mangnall), and their quiet determination to make sure that their challenges were seen and noticed. The Government then took the right decisions in helping them make sure that this does not happen to others. That was the right thing to do.

The hon. Member for Nottingham North asked me to address two or three points. We plan to respond in full to the report later in 2021. It has been incredibly impactful and has already served to put patient safety at the top of the agenda for the whole health and care system. If it had not been for the covid-19 pandemic, I think we would be discussing little else than patient safety because of the Bill before us. Just as covid-19 impacted on the publication of the report, it has impacted our response time. But I assure the hon. Gentleman that that response will come later in the year.

The hon. Gentleman also asked about the speed of the appointment of a patient safety commissioner. I very much want the right person. I cannot give a precise time, but I want to underscore the importance of patient safety and our belief that the patient safety commissioner will and must be effective in amplifying the voice of patients and improving patient safety in the use of medicines and medical devices. I hope that the process will not take too long, but we must appoint the right person, who will truly give the right voice.

On hub and spoke, which the hon. Gentleman and I both agree is so important, there will be a full public consultation. The Government will then report to Parliament, and include a summary of the concerns raised in the public consultation. To ensure that we get the right model to assist pharmacy going forward, we intend to be totally transparent.

To the hon. Member for Strangford (Jim Shannon), I can give an unequivocal yes. We have a thriving life science sector in the UK, contributing over £80 billion a year to the economy and over a quarter of a million jobs. We want to ensure that the UK remains an important market for medicines and medical devices, and to bring products to market here.

As I close, it is perhaps unusual to be pleased that there have been quite so many changes or challenges on a Bill, but I think they have been the right changes and the right challenges. To that end, I thank all hon. Members who have challenged and who have assisted in those changes. I also thank all those who have assisted behind the scenes—the Bill team, my officials and so on. We have arrived at a Bill that I think carries the support of all sides and of both ends of the Parliament, and one where patients, the sector and the public can understand how we do good work and how this Bill will work for them.

Lords amendment 1 agreed to, with Commons financial privileges waived.

Lords amendments 2 and 3 disagreed to.

Lords amendments 4 to 10 agreed to.

Government amendments (a) to (d) made to Lords amendment 11.

Lords amendment 11, as amended, agreed to.

Lords amendments 12 to 14 disagreed to.

Lords amendments 15 to 21 agreed to.

Government amendments (a) to (c) made to Lords amendment 22.

Lords amendment 22, as amended, agreed to.

Lords amendments 23 to 25 disagreed to.

Lords amendments 26 to 29 agreed to.

Lords amendment 30 disagreed to.

Lords amendment 31 agreed to.

Government amendments (a) to (c) made to Lords amendment 32.

Lords amendment 32, as amended, agreed to.

Lords amendments 33 to 39 agreed to.

Lords amendment 40 disagreed to.

Lords amendments 41 to 47 agreed to.

Lords amendments 48 to 50 disagreed to.

Government amendments (a) to (c) made in lieu of Lords amendments 2, 3, 12 to 14, 23 to 25, 30, 40 and 48 to 50.

Lords amendments 51 to 56 agreed to, with Commons financial privileges waived in respect of Lords amendment 54.

Covid-19

Mark Tami Excerpts

Tuesday 12th January 2021 Commons Chamber

[Edward Argar]

If my hon. Friend will show a little forbearance as I make a little progress, I will come to vaccinations and the vulnerable in a moment. I will seek to address his point then; if I do not, I am sure that he will prompt me.

I think every Member of this House fully appreciates and understands the huge burden that these restrictions now place on people today and every day: on pupils, on parents, on businesses, on individuals and on families. The Secretary of State for Education has set out our plan to support people in education settings, including with the provision of new equipment for remote learning. For businesses such as those in retail, hospitality and leisure that have been forced to close their doors once again, we are providing an additional £4.6 billion of support. There will be not a single Member in this House who has not received correspondence and pleas from their constituents who run businesses, be it in hospitality or the self-employed—a whole range of people. Members on both sides of the House will be working flat out to seek to assist them. I do appreciate the pressures that they are under. Of course, that support comes on top of our unprecedented £280 billion plan for jobs, including the extension of the furlough scheme until April.

Let me turn to vaccines. We know that in the long run the best way to help everyone in this country is to suppress the virus and to vaccinate people against it. The NHS is committed to offering, by 15 February, a vaccination to everyone in the top four priority groups, who currently account for more than four out of every five—roughly 88%—covid fatalities. The groups include older care home residents and staff, everyone over 70, all frontline NHS and care staff, and all those who are clinically extremely vulnerable. In working towards that target, there are already more than 1,000 vaccination centres throughout the country, including more than 200 hospital sites, which will increase to 270, and some 775 GP-led sites. Of course, pharmacies are already working with GPs to deliver the vaccine in many areas of the country. As vaccine supply increases, community pharmacies will continue to play an essential role.

Before my hon. Friend the Member for Hazel Grove (Mr Wragg) prompts me, let me turn briefly to the question he asked. The Prime Minister and ministerial colleagues will take into consideration a number of factors when looking at the right time—the safe time, based on the scientific and clinical advice—to ease the current restrictions and to move to a tiered system. One factor that I know will weigh with them and play a part in that decision will be the extent to which vaccination has significantly reduced the risk of death in those groups most likely to be affected by the virus. It would, though, be premature—indeed, it would go well beyond my pay grade—for me to set out the detail of what precise considerations the Prime Minister will be looking at as we reach that point, hopefully in a few months’ time.

This week has seen the announcement of the opening of seven mass vaccination hubs in places such as sports stadiums and exhibition centres, and yesterday we launched our full vaccine deployment plan, which includes measures that we will take, together with local authorities, to maximise take-up among harder-to-reach communities, and our new national booking service, which will make it easier to book and access appointments. In that context, I should pay tribute to one of the great strengths of this country, which is the willingness of the people of this country to step up, pull together and volunteer to assist in times of great need for this country. We are seeing that happening now. In that context, I also pay tribute to The Sun’s “Jabs Army” campaign, through which The Sun is doing its bit to encourage people to sign up and to volunteer—I believe it has got more than 30,000 people to sign up. All this is a reflection of the innate strength of community in this country: when something needs to be done, the people of this country step up and do their bit.

Another part of the plan is our new vaccinations dashboard, which gives daily updates on our progress in the biggest vaccination effort in British history.

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

The Minister has not touched on the covid deniers out there. No doubt we are all getting emails from them, and they are obviously on social media as well. It is important that we get across the message about the safety of the vaccine and the importance of everybody getting a vaccine. It is not just about someone’s personal freedom and what they do; it is about what they can give to somebody else as well.

[Edward Argar]

The right hon. Gentleman is absolutely right. I say to those who may doubt or speculate about this disease: it is real and it has, sadly, taken more than 80,000 of our fellow citizens from us. Watch the news coverage that we all see every night of our amazing frontline NHS staff explaining just what they have seen, what they have had to do on their shift, how they have fought valiantly to save people’s lives, often successfully but on occasions sadly not, and what that has meant for them. I reflect on an incredibly dignified elderly gentlemen whom I saw on the news before Christmas—I think his name was Mr Lewis from the Rhondda—who, in the space of a week, had lost his wife and two other members of his family to this cruel disease. I say to those who say that it is not serious and that it is not as dangerous as some people say: watch those news clips and listen to those people who have been bereaved, and to all those people who have been in hospital and thankfully have recovered but have been through hell and back with this disease. The right hon. Gentleman is absolutely right. We all have a part to play in following the rules and beating this disease. I, for one, as soon as I am eligible to have my vaccination—I fear that the grey hair may not get me higher up the list and that I am too young, along with my shadow, and we may have a while to wait—will certainly take up that offer.

Covid-19

Mark Tami Excerpts

Thursday 22nd October 2020 Commons Chamber

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

The Secretary of State has answered my question in part with the importance of green and red. One of the big problems in the first wave is that people were frightened, even if they feared that they had cancer or some other condition, to go into the hospitals, and we have to reassure them that they can go there and they can be safe.

[Matt Hancock]

The right hon. Gentleman is absolutely right. We have an advertising campaign, “Help us to help you”, to make the simple point to people that, if they are asked to go to hospital by a clinician, then it is safer to go to hospital than not to do so. In fact, we call them green sites and blue sites. Green means free from covid—we are as confident as we can be that they are. It is blue, not red, which means that we still want people to come to hospital, even if they have to come to A&E, because there is only likely to be, at worst, as much covid as in the general population, unless, of course, a person is in a covid ward treating only covid patients. The NHS has learned a huge amount both about the microbiology of the disease and about how to run health services in a world when covid is at large.