Rare Cancers Bill

Siobhain McDonagh Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Dr Scott Arthur (Edinburgh South West) (Lab)]

I beg to move, That the Bill be now read a Second time.

We all know someone who has suffered from a rare cancer—a brain tumour, childhood cancer, pancreatic cancer, liver cancer, or one of the other cancers on a long list that are unfortunately all too familiar. Each of them may statistically be considered rare, but collectively they are anything but rare. Blood Cancer UK states that rare and less common cancers account for 47% of all UK cancer diagnoses—a staggering 180,000 a year. The irony of the Bill’s title is that so-called rare cancers are not rare. Common cancers deserve attention, but so too do rare cancers.

I want to share an example of a family in my constituency who were confronted with a rare cancer. Tilly’s first symptoms were leg pains and loss of appetite. This was in September 2021, when face-to-face GP consultations were not possible. On visiting A&E, she was given ibuprofen. It was thought that she might have a virus. Six weeks later, she returned to A&E and was transferred to the cancer ward, where she was diagnosed with stage 4 neuroblastoma. On diagnosis, she was given a 50% chance of survival. Despite undergoing over a dozen rounds of chemotherapy and an operation, she sadly passed away about a year after her first symptoms appeared. Tilly was just four years old. Her father Jonathan, a headteacher in my constituency, is in the Gallery. He reached out to me after reading about the Bill. He explained his frustration that the development of new treatments for neuroblastoma has been moving at a glacial pace for too long. The same is true for many other rare cancers. This slow pace of change is not respected by these cancers, and it meant that Tilly missed her seventh birthday yesterday.

I thank Jonathan for sharing Tilly’s story, and wish him all the best as he moves to Northern Ireland with Tilly’s mum and big sister Emily to start a new job. I thank Livingston’s Team Jak for their ongoing support for Tilly’s family and many others. Neither Jonathan nor I want to suggest that the Bill would have saved Tilly, but we hope that it will improve survival rates for others, and take them beyond the 50% rate given to Tilly. That is why Jonathan is here today, and why I am here today.

Nobody told me that the most amazing thing about being an MP would be the people we meet almost daily, who want to make their community, our country or even the world a better place. That is particularly true of the people I have been humbled to meet on my journey to speaking about the Bill today, including cancer patients, survivors, the bereaved and campaigners, all of whom want just one thing: justice. Although the healthcare system in the UK is founded on the notion of equality, fairness and justice, they believe that rare cancer patients are being overlooked. Their demand for justice covers three points.

The first is that beating a rare cancer should not be less likely than beating other cancers. I have said that 47% of all UK cancer diagnoses each year are of rare and less common types. These patients already have the cards stacked against them, as they are 17% less likely to survive—an injustice caused by the relative lack of research and development in this field over many years.

Secondly, having a rare cancer should not mean being less likely to benefit from a medical breakthrough. According to Cancer52, in 2024, an astonishing 82% of patients with rare and less common cancers were not offered a clinical trial, and so were denied access to potentially lifesaving treatments. Often that is because such trials do not even exist, because there has been so little progress, and when they do exist, they are not always easy for patients to access.

Let me give an example: there is a remarkable young woman in my constituency known as Kira the Machine. Kira has been living with neuroblastoma since she was 10. She has been through it all: a prognosis of inoperability, 26 rounds of chemotherapy and eight relapses. Her and her mum, Aud, are fundraising legends locally. I do not know a school or workplace in Edinburgh that did not help when they were given just three weeks to raise £500,000 for lifesaving specialist treatment in the USA. Now 21 and fundraising for other cancer sufferers, Kira is an example to us all. She owes her life to a lung cancer drug not typically provided to treat neuroblastoma and not yet generally available in the UK for that purpose, although I understand that Solving Kids’ Cancer is working on that.

Kira appears on my social media so much, and is really well known in Edinburgh because of the fantastic campaign that she and her mum ran. She is a bit of a celebrity, if I can use that word. She came into my office recently to talk about the Bill. It was really humbling to meet her, and because she has that celebrity status, in my mind, I was also quite starstruck; I told her that it was like Taylor Swift entering my office. I resisted the temptation to exchange friendship bracelets with her, but she gave me a Solving Kids’ Cancer badge, which I am proud to wear today.

Kira’s story is important because it reminds us that repurposing existing drugs can unlock great benefits, but those benefits can be delivered at scale only through additional medical research efforts and clinical trials.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

The NHS has a drug repurposing office. To date, it has repurposed one drug, and that was for breast cancer. Does my hon. Friend think that is good enough?

--- Later in debate ---

[Mike Wood (Kingswinford and South Staffordshire) (Con)]

I congratulate the hon. Member for Edinburgh South West (Dr Arthur), both on his good fortune in being drawn in the private Member’s Bill ballot and on his wisdom in picking this very important issue to take forward. Having been similarly lucky in being drawn in that ballot a few weeks after I was first elected, nearly a decade ago, I know the barrage of calls and emails that suddenly come your way—the very sudden and slightly fleeting popularity that comes from coming towards the top of the private Member’s Bill ballot—and the very many, very worthy causes and campaigns that come your way for you to choose between. The hon. Gentleman could not have picked a better cause than the one represented by this Bill, and if he is never again quite as popular as he was in the few hours after the publication of the ballot results, I know that he would willingly exchange all of that popularity in an instant for the difference that this legislation can make to so many lives across the country, if and when it is passed and implemented—as we hope it will be.

I stand today not just as a Member of this House but as a friend who is deeply moved by the pain of seeing someone I care about—someone who has become like family—struggle against an insidious disease. This Bill is not just another piece of legislation; it is a cry for help. It is a plea for those who are fighting for their lives—a lifeline for families who are watching their loved ones slip away, bit by bit and day after day. Too often, those diagnosed with rare cancers are left stranded in a system that does not have the answers they need.

We know the wonders that pharmaceutical companies can do in drug development, but the horrible truth is that few people are able or willing to invest the enormous amount of money needed to take forward drug development—knowing that about one in 25,000 drug candidates make it to market—for conditions that will require that drug 1,000 or 2,000 times a year, at most.

[Dame Siobhain McDonagh]

Does the hon. Gentleman agree that there is a whole range of new modern immunotherapy drugs that could be used on these cancers? They already exist, they are used to treat other people, but they are simply not tried. The cost of those trials is not overwhelming and we can do them, and the NHS repurposing project should be doing them.

--- Later in debate ---

[Monica Harding (Esher and Walton) (LD)]

I thank the hon. Member for Edinburgh South West (Dr Arthur) for bringing the Bill before the House, and pay tribute to him and to the hon. Members who have already spoken so movingly on this subject, including the hon. Member for Calder Valley (Josh Fenton-Glynn). I also pay tribute to the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for her tireless advocacy.

The many forms of cancer categorised as rare according to the Bill might each strike a small number of people, but taken together rare cancers make up almost one in five of all cancer diagnoses. Each incident, each diagnosis, each prognosis has the same devastating impact on families throughout the country, my own being no exception. My brother-in-law, Group Captain Pip Harding, who was 53, was diagnosed with stage 4 glioblastoma this time last year. At the time, he was serving in the Royal Air Force with the US Indo-Pacific command, one of his many tours, including in Afghanistan and Iraq. He was given nine to 12 months to live. For his wife Claire and his five children, the news changed everything.

In September, I joined Pip, his family and over 400 other loved ones at RAF Benson in Oxfordshire for what was called a “dining out” or farewell ceremony, an event to allow everyone to be together with Pip, potentially for one last time. You can imagine how difficult, yet how moving, that was. A few weeks later, Pip was lucky enough to come across the pioneering brain surgeon Dr Paul Mulholland, who has been trialling a treatment called oncothermia. This employs radio frequencies to target and heat malignant cancer tumour cells while avoiding healthy cells. Oncothermia is not currently available on the NHS and each one-hour treatment costs £1,000. A tumour like Pip’s requires 36 sessions.

For most people, indeed for almost all of us, that kind of money and, consequently, that course of care, is out of reach, but the 400 friends and family who attended Pip’s farewell dinner set up a GoFundMe page, which is now covering the cost of the treatment. We love Pip, which is why we all put in as much as we could to fund it. Cancers like this, with a brutal and bleak prognosis, bring people together to fight it. I want the Government to share that resolve. Since starting the monthly oncothermia sessions in December, the first MRI scan showed that Pip’s brain tumour had reduced in size from 7 cm to 1.7 cm. Pip is, thank God, still alive and watching today. European studies now suggest that oncothermia can extend life for four to five years. For Pip’s five children, that time is everything.

But that is not the whole of my experience with glioblastoma. In 2021, my husband John’s best friend Ian died from the disease. His widow Nicola is in the Gallery. Almost unbelievably, Nicola’s sister Karen, who had done so much to help Nicola through the loss of Ian, was herself diagnosed with a stage 4 glioblastoma last year and died a few months later.

I know that others in the Chamber and in the Gallery have had their lives touched by glioblastoma, too. I am sure they will agree that in the past three decades there has been an unacceptable lack of progress made on this disease: a lack of progress in developing new treatments, making them widely accessible and keeping those diagnosed with glioblastoma here with their loved ones. In the past 50 years, cancer survival rates in the UK have doubled. Whereas in the 1970s only 25% of those diagnosed were expected to live 10 years, today over half do. That is a record of staggering success and represents countless lives extended, made richer and fuller, and even saved. When it comes to glioblastoma, however, there is far less to celebrate. The chances of living a decade with the disease are one in 100. The gains in life expectancy over recent decades can be measured in months—precious, yes, but not nearly enough.



Glioblastoma is a rare cancer, but also an exceptionally lethal one. Brain tumours are the biggest cancer killer of children and of adults under the age of 40, yet in recent years, glioblastoma has been apportioned only around 1% to 2% of UK cancer funding. In 2018, to honour Dame Tessa Jowell, the Government announced a doubling of funding for research into brain tumours, but six years later, it was widely reported that less than half of the pledged £40 million had actually been spent. During each of those years, as funding was being delayed and sluggishly deployed, more than 3,000 people in the UK were diagnosed with glioblastomas. Will the Government update the House on how the remaining funds have been and are being spent? Will the Minister assure me that as the national cancer plan is developed alongside the NHS 10-year plan, deliberate and specific consideration will be given to glioblastomas?

The Medicines and Healthcare products Regulatory Agency incentivises research on orphan drugs, granting exclusivity for manufacturers and making it cheaper to bring drugs to market once they are developed, but clearly, when it comes to glioblastomas, it has not had adequate success.

[Dame Siobhain McDonagh]

I have been to see the MHRA numerous times and have asked about repurposed drugs. Many pharmaceutical companies are worried about repurposing drugs; the fear is that if glioblastoma research were to affect the main cause for having the drug, that might make the drug less successful. We have beseeched the MHRA to treat glioblastoma separately. Would the hon. Lady support such a move?

[Monica Harding]

I would of course support such a move, and I urge the Government to listen and take action.

Getting it right on glioblastoma is vital. Despite minor breakthroughs, exciting innovations and apparently promising research leads, for this disease, there has simply not been the improvement in survival rates that most cancers have had. To put it bluntly, glioblastoma remains a death sentence—an increasingly common one. In the UK, cancer diagnoses have increased, but although there are some worrying sub-themes, this trend is largely due to increased life expectancy. However, that is not the case with glioblastoma. In the past 30 years, rates in the UK have more than doubled. There has been far more of an uptick than is attributable to us all living longer. More people are developing this disease, yet we have failed to make meaningful strides on treatment and cures, or even on giving those with glioblastoma a little more time with those dearest to them. Now is the moment to do something about that.

I welcome the Bill. I welcome its emphasis on improving research—I have already touched on drug development—and the provisions to facilitate clinical trials, because the grim reality is that for glioblastoma, those trials are hard to conduct. There are too few patients, and frequently their life expectancy is too limited. Anything that can be done to connect eligible patients with researchers faster and with less friction is valuable.

I emphasise that there are great opportunities in front of us for accelerating research and making broad advances in the battle against rare cancers. Along with almost half my parliamentary colleagues, I am proud to have pledged my support for the Lobular Moon Shot project, which advocates a boost of around £20 million over five years for research on the basic biology of invasive lobular breast cancer, with a view to developing new treatments. Despite being the second most common form of breast cancer, lobular breast cancer is in many ways treated like a rare cancer. It is under-researched, difficult to diagnose through the standard screening mammogram, and often presents fewer symptoms than invasive ductal carcinoma, which makes up the overwhelming majority of breast cancer incidents.

--- Later in debate ---

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Through you, Madam Deputy Speaker, I want to apologise to the young black man on the Northern line tube from Colliers Wood this morning for having to spend his journey looking at me sobbing my heart out. It must have been a very odd experience. I wanted to say to him, “I am not just sad; I am angry.” I am angry at the NHS. I am angry at the MHRA. I am angry beyond belief at the National Institute for Health Research. It should be renamed the national institute for something that does not do very much at great public expense.

All these institutions are bedevilled by the desire to carry on doing what they have always done. It does not get them sacked. As the former Home Secretary John Reid—Lord Reid—constantly tells me, “Siobhan, nobody ever got sacked for continuing to do the same thing. You are only sacked if you do something different.” My God, has this morning not told us that we need to do something different? We have the tools to do something different, but the people in positions of power and responsibility choose not to. We have the best health system in the world for potential drug trials—a uniform system with well-trained doctors, great scientists, great universities and great hospitals—but do we do them? No. Do we fail people every single day? Yes. Do we threaten those doctors who try to do something different? Let me tell the House, groundbreaking oncologists are looking over their shoulder, waiting for the regulator to come and get them when one of their colleagues grasses them up. That is the atmosphere in our intellectual and health service institutions.

I could feel sorry for myself and for my loss, but I do not want that; I want things to change. All of us, from all parties, need to run fast and break things, and provide a challenge to the people running our systems. We have a drug repurposing project in the most universal health system in the world, so why are we not repurposing drugs for people with rare cancers? Why is that not being done for glioblastoma? Why is it that in May, we will open a drug trial at University College London and University College London Hospitals trust in Margaret’s memory to trial one such drug that has been in the system for years? We organised a dinner with former Prime Minister Tony Blair; some ran marathons; and others sold cakes and scones in beautiful Cornwall villages. Doing those things gave us a great deal, but why, under our system, do we have to do them?

Why is it that the trial in May, under the amazing Paul Mulholland, will be based in only one trust? It is because if we had negotiated with all the other hospital trusts that are experts in this field, it would have taken us two years to get started. Why are we outstripped by Israel, Spain, America and any number of countries? It is because we cannot get our act together to start a trial, as each hospital trust is arguing about and seeking to renegotiate every trial and every plan.

This is not new. The issue was raised by Lord O’Shaughnessy in his great report on clinical trials. That report is two years old, but we have made no progress. We made no progress under the former Conservative Government, and we have made no progress under our Government. The £40 million given to the National Institute for Health and Care Research in 2017 for glioblastoma and brain cancer drug trials has not been spent. Can any Member of the House explain to me how that is humanly possible? Do we not have drugs that we could trial? Yes, of course we do. Trials are not that complicated; we can do them if we choose to. We have the doctors to do them. We need to want to change.

I apologise to the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton), because when she came to talk to me in the Tea Room this morning, she got this at a very fast pace. I have now met four wonderful cancer Ministers, two Conservative and two Labour. They have all been dedicated, and all wanted to sort this out, but we cannot do this by edict, or by hoping and wishing. Unless we change things and unless, I dare say, some people are removed, it will never happen. All the institutions I mentioned continue to exist because they do not do things differently.

Someone diagnosed with a glioblastoma will get the same treatment that they would have got 25 years ago. They will have their tumour removed. They will be delighted that it is gone, but it is not gone; it is coming back. They will be given eight weeks’ radiotherapy. It is brutal. It will help them for a while, but the tumour will come back. Then they get given chemotherapy— the drug is temozolomide, which was approved at the beginning of the 2000s. It will help, but the tumour will come back. They have to be able to withstand that drug themselves.

Margaret could not do that. By March, five months on from her diagnosis, she could not take it; her kidneys collapsed. What happens then? We had money and good friends. At this point, I would like publicly to thank Lord Waheed Alli for the kindness and friendship he showed us through Margaret’s journey. The treatment that he has experienced from the press is absolutely appalling. He helped us on our way. But what about somebody with no money who cannot fundraise? Their life ends at the chemotherapy. There is nothing on the NHS, but those lucky enough to have the money can find a way.

I am really grateful that the brother-in-law of the hon. Member for Esher and Walton (Monica Harding) is on the oncotherapy machine. My sister fundraised for that machine, because we had to go to Dusseldorf to have it, so we brought it here. It is great that he is receiving much benefit from it. I know that many other people are, too.

Why is the NHS, which is so risk-averse that it will not allow slightly alternative therapies for cancer, happy for people who are really ill to get on a plane and go to a different country? Is it because it does not see what happens in another country, so that is okay? I have told the stories of holding my sister’s head as she was sick in a bucket in terminal 5 at Heathrow airport, of carrying her on to a plane in the hope that the air stewardess would not see how she was, of lying next to her overnight hoping that she would be alive in the morning, because what was I going to do in a hotel in Germany, where I could not speak that language? That is my experience, but I am only one of thousands and thousands of people who do this every year, including children, because our system will not allow the use of novel treatments.

Why? Why can’t we change things? Why don’t we get up every single day and want to cure something? I do not know about other hon. Members, but since I joined the Labour party, and since I became an MP in 1997, I have got up every day and hoped that we could make things better in some way. I do not understand why our systems do not want to do the same thing. I want to understand, but it is beyond me. If there are drugs that could cure or give longer life to people with glioblastoma, why don’t we trial them? That is not beyond our ability. We have the money to do it. If we do not have the money, we will raise it. We just need the opportunity.

I do not know why we do not have that wish to achieve. I was given some hope yesterday by the proposed abolition of NHS England, because something needs to change. I do not know whether that is the right or wrong thing to do, but we need to liberate people to do things. Let us face it: in the end, only people who are well motivated and willing to take a risk can change things. Beyond that, people will continue to die, will continue having to go to other countries, will continue having to spend large amounts of money. People not lucky enough to be in that position will just die prematurely.

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill and for the courtesy he has always shown me, which must have been difficult at times as I sat shouting at him in Portcullis House about how everything was useless and hopeless. In my calmer moments, I understand that progress begins with small steps. I am frustrated that those steps are too small. I am delighted that there will be one database for trials, but if there are no trials, the database does not get us very far.

We will have a report on the orphan drug Act in 18 months’ time. In that period, over 3,500 people will have been diagnosed with a glioblastoma, and many of them will have died. Why is it going to take us 18 months? Why can’t we change things now? Why, in spite of the huge support we have had for the Bill from the Secretary of State for Health, could we not get something much more fierce in it? It is not a criticism; it is an observation. I know progress begins slowly, and I am grateful for my hon. Friend the Member for Edinburgh South West taking up the Bill and for having the calm demeanour that I lack, because I do not think the Whips would have accepted anything that I would have come up with as a private Member’s Bill.

We need a revolutionary attitude. We either see and harness progress, or we come back next year, the year after and the year after that to ask why there has been no progress. All of us, individually and communally, need to dedicate ourselves to that progress and to keep asking the questions, being angry and simply refusing to accept that nothing can be done.

National Cancer Plan

Siobhain McDonagh Excerpts

Tuesday 4th February 2025 Commons Chamber

[Andrew Gwynne]

I start by genuinely thanking the shadow Minister for the co-operation she has pledged as we seek to improve the outcomes for people with cancer. This is not a party political issue. We all want people to be diagnosed more quickly and to be put on the effective treatment pathways as quickly as possible, and we all want people to have better outcomes. I would just remind her, however, that while progress was made over the past decade, as I referred to in the statement, Lord Darzi clearly set out that the rate of progress was much slower than in comparator countries, and that we could and should have been on a much better trajectory.

That is why we are committed to a new national cancer plan—something for which the sector has been calling for some time. We are going to consult on that plan. I hope the shadow Minister is not suggesting that we should just pull a plan out of thin air without any consultation with the sector, patients or anybody with any interest in cancer.

Of course, things have changed over recent years. New technology has advanced and scientific progress is advancing, although there are still some areas where, stubbornly, there is not enough research. We need to build up the case for research and get the funding in; I think especially of brain tumours, where, quite frankly, things have not progressed at all. We need to ensure that in the 10-year cancer plan, we really drive forward in some of those areas, using the latest technology and scientific advances.

The shadow Minister asked about targets. I just say to her that we have actually strengthened targets, rather than setting new ones for cancer. Currently, the NHS is on track to deliver against its cancer targets for this year. Yes, we should be ambitious where we can, and that is exactly what this Labour Government are going to do.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

I am delighted to announce to the House that we will be opening a drug trial for glioblastoma brain tumours in May, in memory of my late sister, Margaret. [Hon. Members: “Hear, hear.”] But for how long will progress on this depend on people baking cakes, running marathons and organising dinners? When will the NHS and the National Institute for Health and Care Research get their act together and do something for the 3,200 people who will be diagnosed with this dreadful illness this year?

[Andrew Gwynne]

I am very grateful to my hon. Friend for her question. Those of us who knew Margaret miss her very much; she was such a towering figure in the Labour party for so many years, and we on the Labour Benches have a lot to thank her—and, indeed, my hon. Friend—for.

My hon. Friend is absolutely right on research. This is one area where, quite frankly, we have not done well enough. We have not made any progress. I know she will continue to champion more research. With our new national cancer plan, I hope that she will be pushing on an open door, because this is one area we absolutely have to do much better in.

Rare Retinal Disease

Siobhain McDonagh Excerpts

Thursday 23rd January 2025 Westminster Hall

[Shockat Adam (Leicester South) (Ind)]

What a pleasure it is to serve under your chairmanship, Dame Siobhan. In my time in the House I have written speeches for Westminster Hall that are five, six or seven minutes long, but by time I get here the Chair always tells me that I have a minute, so I only wrote a minute-long speech.

[Dame Siobhain McDonagh (in the Chair)]

The hon. Gentleman can go on for as long as he likes.

[Shockat Adam]

The hon. Member for Strangford (Jim Shannon) said, “Do what I do and expand it.” This subject is extremely important, and I am so grateful for the hon. Gentleman for bringing it to this Chamber.

Imagine a mother-to-be sitting on a consulting room chair. Her excitement at becoming a mother has been overshadowed by the news that she has been diagnosed with Stargardt disease. It is literally a race against time: will the child be born or will the sight be lost? Imagine a young boy who has expressed his ambition to become a rugby player for England, only for a cursory investigation at the back of the eye to detect retinitis pigmentosa. Unfortunately for me, that was my reality as an optometrist. I faced such heartbreaking cases regularly in my profession.

Rare retinal diseases such as retinitis pigmentosa, Stargardt disease and Leber congenital amaurosis, among many others, are individually rare but collectively very significant. They devastate and destroy lives. The hon. Member for Strangford mentioned Chris, the victor of “Strictly Come Dancing”; he shows the potential of the majority of people with sight loss, but unfortunately that is not the reality for most—their lives are destroyed, their independence is taken and opportunities at work are limited.

The UK Government have committed to tackling rare diseases through initiatives such as the UK rare diseases framework, which aims to improve diagnosis, raise awareness and enhance the access to specialist care. Additionally, a new action plan is set to be released in 2025, showing promise for further progress. But commitments need to translate into tangible action.

Furthermore, we need regulatory bodies such as NICE to play a pivotal role. I fully appreciate NICE’s work to ensure that the quality and safety of treatments can never be compromised—those principles are non-negotiable —but to encourage innovation, NICE must proactively engage with pharmaceutical and medical companies to work collaboratively to establish best practices. Such dialogue will signal to companies that their commitment to researching rare diseases, which costs millions, will be met with the potential for reward. This will ensure that patients can benefit from cutting-edge advancements without delay. As the hon. Member for Strangford said, short-term investment in research and treatment for rare retinal diseases will deliver long-term financial benefits, to the tune of £600 million. It will also reduce lifelong healthcare costs and empower patients to live independent, productive lives.

The eyes are indeed the window of the soul, but they are also the window to our health. So many health conditions are detected in the eyes, and rare retinal conditions can lead to the early detection of other health conditions, such as Behçet’s disease and so many others. We are thankfully on the brink of transformative breakthroughs. Gene therapies such as Luxturna, which is a virus vector-based medication, along with AI-driven early detection and advancements in stem cell research, offer real hope. By supporting those innovations with funding and adaptable regulations, we can bring life-changing treatments to those who need them most.

This is about not just heath but equity and humanity. Without action, we will condemn families to live in the shadow of irreversible loss, because if a person has sight loss, it affects the whole family. With action, we can rewrite their stories and give them hope and vision. Let us act now for that mother, that young boy and the thousands like them. Sight is not a privilege: it is a right.

--- Later in debate ---

[The Minister for Secondary Care (Karin Smyth)]

It is a pleasure to serve under your chairmanship, Dame Siobhan. I start by thanking the hon. Member for Strangford (Jim Shannon) for securing this debate on such an important issue and other Members for their contributions.

Both the shadow Secretary of State and I are covering for other colleagues this afternoon, so hon. Members can imagine my joy when actual experts walked into the Chamber. The hon. Members for Leicester South (Shockat Adam) and for Torbay (Steve Darling), as has been said, bring great personal and professional expertise to this debate, so it was joyful to see them come in. It was good to hear from my hon. Friend the Member for Doncaster East and the Isle of Axholme (Lee Pitcher); the experience he brings through his wife is really valuable. My hon. Friend the Member for Battersea (Marsha De Cordova) has been such a champion of this issue both in her personal experience and since she came to the House. I understand that it is her birthday today, so I hope she is having a good time. She has brought great expertise to this place.

I am going to do my best to answer the questions. I have been billed highly by the hon. Member for Strangford, and I am grateful for that. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Gorton and Denton (Andrew Gwynne), will write to hon. Members about anything that is outstanding.

I would like to take time to acknowledge the experiences of those living with rare inherited retinal diseases and their families, who I know will be paying attention to this debate. I pay tribute to all those who work tirelessly to raise awareness of rare conditions and bring about change. Although rare diseases are rare individually, their impacts are far-reaching. One in 17 people will be affected by a rare condition over their lifetime; that is around 3.5 million people in the United Kingdom. As the hon. Member for Strangford said, rare inherited retinal diseases affect around 25,000 people in the UK and collectively represent a leading cause of sight loss in working-age adults. We recognise the impact that these conditions have on patients, families and wider society and the need for innovative approaches to tackle these changes.

The Government are committed to improving the lives of people with rare conditions. The hon. Member for Torbay used that quote about providing opportunity, support and determination for people. The UK rare diseases framework outlines four priorities to achieve this aim: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better co-ordination of care; and improving access to specialist care treatment and drugs. In England, our annual rare diseases action plan sets out the steps we are taking to meet those priorities. We continue to make progress and are working to finalise our next England action plan for publication this year.

It is vital that NHS patients with rare diseases are able to access innovative new treatments as they become available. That includes those with progressive retinal diseases, where early intervention is crucial to preserve sight. Under England’s action plans, NICE, the Medicines and Healthcare products Regulatory Agency and NHS England are working to understand and address the barriers to access for rare diseases treatment. The hon. Member for Strangford asked a number of questions about NICE’s approach that I hope I will cover. NICE does a difficult job well, in my view, and we think its approach is appropriate for the evaluation of treatments for rare diseases. NICE recommended 84% of medicines for rare diseases evaluated through its standard technology appraisal programme in 2023-24. That is comparable to its approval rate for medicines for more common conditions. Those treatments are now available for the treatment of NHS patients.

NICE also operates a separate, highly specialised technology programme for the evaluation of a handful of medicines for very rare diseases each year that recognises the challenges of bringing treatments for very rare diseases to market. NICE recommended the gene therapy Luxturna for a type of inherited retinal dystrophy through that route. One of the recipients of that groundbreaking therapy on the NHS has spoken of his gratitude for the positive effects of the treatment on not just his vision, but his confidence and independence.

NICE is also in the process of reviewing the criteria for routing topics to its highly specialised technologies programme, which the hon. Member for Strangford asked about. That review will ensure that future routing decisions are more transparent, consistent, efficient and predictable. As part of that process, NICE has launched a public consultation on its progress. I encourage the rare diseases community and hon. Members interested to continue to engage with that process.

Research offers a way to accelerate access to new and innovative treatments. Through the National Institute for Health and Care Research, the Government support rare diseases research. There are currently eight active research projects on rare retinal disease funded by the NIHR, with a combined value of over £6 million. The NIHR also invests in infrastructure to support and deliver research studies. The NIHR Moorfields Biomedical Research Centre, which is dedicated solely to vision research, has made significant strides in the field of rare retinal diseases. By harnessing genomic data, the BRC has developed effective treatments, including gene-replacement therapies for inherited retinal disorders. The NIHR is also working closely with commercial companies to bring new medicines and technology to patients.

To connect people living with rare diseases to innovative treatments and sources of support, we need to diagnose these conditions as early as possible. The UK is a world leader in genomic diagnosis. Patients in England have access to whole genome sequencing on the NHS. Advances in genomics mean that new causes of rare retinal diseases are being found every year. As part of Genomics England’s generation study, we are harnessing the power of genomic sequencing to screen for over 200 rare genetic conditions that can be treated in the NHS in early childhood to improve outcomes for babies and their families. That includes the rare retinal disease RPE65-associated Leber congenital amaurosis, which can be treated with Luxturna.

A central mission of this Government is to build a health and care system fit for the future. The 10-year health plan will ensure a better health service for everyone, regardless of condition or service area. The plan will focus on our three shifts for a modern NHS: moving from hospital to community, analogue to digital and sickness to prevention. All three offer opportunities to improve time to diagnosis and care for people living with rare retinal conditions. The shift from analogue to digital will enable innovative uses of data to improve diagnosis and measure treatment outcomes, while NHS ocular genetics services’ use of video consultations continues to widen patient access to specialist advice, in keeping with the shift from hospital to community. Although many rare diseases are not preventable, early diagnosis, as we have heard, can lead to timely interventions that improve health outcomes.

I will outline the treatment pathway for rare retinal diseases. I am thankful for the role played by high street optometrists, some of them here today, in helping to identify patients with sight-threatening conditions. There is good availability of NHS sight-testing services, with over 12 million free NHS sight tests provided to eligible groups annually, including children, individuals aged 60 and over, and those on income-related benefits. Optometrists are required to refer any patient showing signs of injury, disease or abnormality and integrated care boards have been asked to ensure that there are direct referral pathways in place between community optometry and secondary care. As the hon. Member for Leicester South said, the eyes are the gateway into other health conditions. Optometry has a very important role.

As one of the busiest outpatient specialties with one of the largest waiting lists, we know that ophthalmology is facing huge challenges and we are working hard on how we can help to build capacity. NHS England is looking at how digital connectivity could improve the triage of patients referred between primary and secondary care. That would allow for images to be shared, and specialist advice and guidance could help to keep patients in the community where possible.

We recognise the importance of access to emotional and practical support, especially where treatment may not be available. A diagnosis of sight loss will have a profound impact on any individual, who will be at increased risk of stress, anxiety and depression. NHS England’s patient support toolkit for eye care commissioners and providers aims to ensure that patients with ophthalmic conditions or sight loss are supported throughout their care journeys. The RNIB patient support pathway aims to strengthen that and ensure that support and guidance are available to patients from their first eye care appointment through to having a confirmed diagnosis, and then right the way through to living well with their condition. I know that the work of the all-party parliamentary group on eye health and visual impairment and of other hon. Members will help in giving those people a powerful voice.

As we work towards building a health care service fit for the future, it is vital that people living with rare diseases are not left behind. With the UK rare diseases framework coming to an end in 2026, we will look to build on the progress made over the past five years, which the shadow Secretary of State mentioned. We will work with colleagues in the devolved Administrations, as highlighted by the hon. Member for Strangford.

We have commissioned an evaluation of England’s rare diseases action plans through NIHR and will also be undertaking engagement this year to inform future policy decisions. The Government are deeply committed to working across the health and social care system and with the rare diseases community to improve the lives of those with rare conditions.

Once again, I thank the hon. Member for Strangford for raising this important matter. It is good to have high interest, expertise and experience in this place. We want to work with colleagues here and we thank the rare disease community for their valuable ongoing engagement with us to bring about meaningful change.

[Dame Siobhain McDonagh (in the Chair)]

Order. I will now put—[Interruption.]

[Jim Shannon]

rose—

[Dame Siobhain McDonagh (in the Chair)]

Oh, I am sorry; I nearly denied the hon. Member for Strangford his right to sum up. I apologise. I would never wish to silence him.

[Jim Shannon]

I know we are all anxious to get away, Dame Siobhain. So am I, by the way—I have a plane to catch.

Can I say a big thank you to everyone who took part in the debate? The hon. Member for Leicester South (Shockat Adam) brought up the personal stories of the mum who was expecting and did not realise that she was going to end up with this disease and of the young boy who wanted to be a rugby star when unfortunately that was not going to happen. Those are reminders of what the disease does and I thank him for that. I note that he is an optometrist; I did not know that he did that before he came here, but now I do and I thank him for it. The Minister was right in saying that the talent and information brought to the Chamber has helped us to move forward. The hon. Member for Leicester South also discussed gene therapy and said that the eyes are the window to health. Again, I thank him for that significant contribution.

The hon. Member for Doncaster East and the Isle of Axholme (Lee Pitcher) brought us the personal story of his wife, and what they live with every day. Stories of family members are sometimes forgotten; they are doing something for someone and there is a personal story about how the rest of the family is affected.

The shadow Secretary of State was right that the hon. Member for Torbay (Steve Darling) brings many things to this Chamber outside of health issues. When he speaks there on the front row, we take knowledge; we are always reminded by that wee bell that rings that he is here. We all know. I thank him for that and for his knowledge, which is so important.

The shadow Secretary of State and I have been together in many debates over the years. This subject is important and interesting and he was right to thank the hon. Member for Battersea (Marsha De Cordova). I should have done so; apologies. He is right that she has been a leader and a champion when it comes to eye trauma. By the way, I did not know that the work place most dangerous for the eyes was the garden. That was news to me. I will not talk about my endeavours with a chainsaw; they were scary, although I have survived. The shadow Secretary of State also mentioned regular eye tests, early diagnosis, treatment, research, affordable solutions, the UK rare diseases network and the degree of concern.

I thank the Minister. It may come easy or not so easy, but the hon. Lady always endeavours to give a response on the issues, whether her direct responsibility or not. Today she has done that. She referred to this as a far reaching issue and said that the Government are committed to the rare diseases framework, to faster diagnosis and to the new treatment Luxturna. Right away, she was able to tell us that some people have got that and are feeling the benefit. Those are the pluses that come out of these debates. The Government are committed to research and development and the UK is a leader in genomics. She referred to the treatment pathway and also to ensuring that those with rare retinal disease not being left behind. That is a message we all appreciate. Today the debate has done that, and the Minister has done it well.

[Dame Siobhain McDonagh (in the Chair)]

I apologise again to the hon. Member for Strangford.

Question put and agreed to.

Resolved, 

That this House has considered innovation in the field of rare retinal disease.

New Hospital Programme Review

Siobhain McDonagh Excerpts

Monday 20th January 2025 Commons Chamber

[Wes Streeting]

This weekend the Leader of the Opposition said that she will be honest about the mistakes of the Conservative Government. It seems that the shadow Health Secretary did not get the memo. If the Leader of the Opposition is serious about showing some contrition, she might want to start here. In 2020 the Department of Health and Social Care requested funds from the Treasury to rebuild the seven RAAC hospitals. That request was denied, setting back the necessary rebuild of those hospitals by years. The shadow Secretary of State will remember this, as he was a Minister in the Department at the time. Which of his colleagues was a Treasury Minister when it blocked the rebuild of the RAAC hospitals? The Leader of the Opposition. That is her record. She should apologise.

Once again, like the arsonist returning to the scene of the crime to criticise the fire brigade for not responding fast enough, the Conservatives have the audacity to come here and talk about a failure to deliver, when promise after promise was broken. The shadow Secretary of State was the Chief Secretary to the Treasury who had to come in to clean up the mess caused by Liz Truss’s mini-Budget. That is what crashing the economy looks like. They still have not had the decency, even under new leadership, to apologise.

If the shadow Health Secretary genuinely believes that all these projects could be delivered by 2030—the commitment in the Conservatives’ manifesto—I invite him to publish today their plan for doing it. How would he ensure the funding, labour supply, building materials and planning to build the remaining projects in the next five years? Which capital programmes would he cut? Which taxes would he increase? He knows as well as anyone that those are the choices that face Government.

While he is doing that, can the shadow Health Secretary tell us what he can see that the National Audit Office, the Infrastructure and Projects Authority and the eyes in my head cannot see? What was the Conservatives’ plan past March, when the money runs out? What taxes would they have raised? I wonder what capital projects they would have cut in order to invest even more than we are in hospital buildings—the biggest capital investment since Labour was last in office.

While he is answering those questions, the shadow Healthy Secretary might want to reflect, with the shadow Cabinet and with Members on the Benches behind him, on the other messes that this Government are having to clear up. As I look around the Cabinet table, I see an Education Secretary dealing with crumbling schools, a Justice Secretary without enough prison places, a Defence Secretary dealing with a more dangerous world, a Transport Secretary having to rebuild our crumbling infrastructure, and a Deputy Prime Minister building the homes we need—in short, dealing with multiple crises of the Conservatives’ making. There is a massive rebuilding job to do in Britain, and we are getting on with it.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

I think my point will be unlike that of any other Member in the House. The specialist emergency care hospital in Sutton is in tier 2 of these schemes. Can I say to the Secretary of State, as I have said to every Health Secretary over the past 25 years, that no one wants this? We want the services at St Helier hospital to remain at St Helier, where the people who are poorest and most ill need them. Will he look at this £500 million-pound scheme to see if it is really necessary?

[Wes Streeting]

My hon. Friend is absolutely right: I think that will be a unique representation this afternoon. I can already hear the vultures swooping, looking for that capital allocation and slot in the pipeline. She has made the case repeatedly, forcefully and with conviction that these services should remain in a community with high levels of deprivation and high need. I know that the Minister for Secondary Care, my hon. Friend the Member for Bristol South (Karin Smyth), has already committed to meeting her, and we are very happy to have those conversations with her.

Health and Adult Social Care Reform

Siobhain McDonagh Excerpts

Monday 6th January 2025 Commons Chamber

[Wes Streeting]

We will certainly write to the hon. Member with further information about Hereford CDC. On capital investment, I say to her and to other right hon. and hon. Members that we were very pleased with what the Chancellor was able to deliver in the Budget. We recognise that the stop-start we saw on a number of capital programmes under our predecessors was frustrating and we are determined not to repeat that. That is why we are setting out clear and consistent proposals for capital investment in the NHS.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Last summer we celebrated the 25th anniversary of the elective orthopaedic centre in south-west London. The driving force behind that was Professor Richard Field, who came to my surgery every week after the 1997 election. With the help of the Prime Minister Tony Blair and the late Health Secretary Frank Dobson, he made it real. It has the lowest blood use rate for hip and knee replacements, the shortest stays and lowest levels of infection. Will my right hon. Friend congratulate Professor Richard Field and agree that his elective hubs are the way to cut waiting lists?

[Wes Streeting]

I warmly congratulate Professor Richard Field on his clinical leadership, which has made a difference to countless lives, not only in my hon. Friend’s part of London but because of the national example that he set, which many others followed. That confirms my strong conviction that the best innovations will come from great clinicians. It is our determination to make sure that senior leadership in the NHS and in government back great clinical leadership and innovation, and take the best of the NHS to the rest of the NHS.

Children’s Hospices: Funding

Siobhain McDonagh Excerpts

Wednesday 30th October 2024 Westminster Hall

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

It is a pleasure to serve under your chairship, Mr Twigg. In my constituency, we are amazingly served by Shooting Star CHASE hospice, a children’s hospice that serves 14 London boroughs across south-west and north-west London—quite why that configuration exists, I am unsure—and boroughs and councils within Surrey. I calculate that that is around 1.5 million people. The service provides support to 544 children and their families.

In essence, the funding crisis is due to the unique and specific services that that hospice provides to those children and families. No public body owns it, and those it serves are so dispersed that any integrated care board can simply ignore the tiny number of families in its area. Every social services department in those 14 London boroughs—all of them beset by the huge problems involved in looking after children—will have a tiny number of children and families, who can therefore be ignored. That is why, despite the desire to bring everything down to the most local area or unit, we would like the Minister to hear the strong argument for maintaining the ringfenced grant for children’s hospices. To bring that down to local level would be to give it to services that are already under pressure, where numbers and leverage are equally small.

The breakdown in hospices and children’s hospices always has a cost. If a family cannot get support to look after a child with a life-limiting condition at home, in the end the NHS and social services will step in. I appreciate that it is difficult for Governments of all shades to look at issues in this way, but in the long term and in the round hospices save public money. They prevent family breakdown and ensure high standards of care. Few of us would argue anything but that the best place for a child with a short life is at home, supported by the wonderful professionals we have all met.

I ask the Minister to support the continued central funding of children’s hospices, as well as to look at what can be done for those services with ICBs and social services departments to ensure that they are held to account for their funding and how they allocate it. Given that we have the opportunity of the 10-year plan for the NHS, is it not time to consider palliative care as part of that framework?

Unlike some Members, I think there is a role for volunteers in raising funds, for instance in shops. I have seen the value of that for individuals who contribute, and I am sure that the amazing constituents of my hon. Friend the Member for Liverpool West Derby (Ian Byrne) have all benefited greatly through what they have done to save his children’s hospice. However, hospice funding cannot be jeopardised by being left just to volunteers; the community and its Government, hand in hand, need to look after the most vulnerable children in our country.

[Several hon. Members rose—]

NHS Performance: Darzi Investigation

Siobhain McDonagh Excerpts

Monday 7th October 2024 Commons Chamber

[Victoria Atkins]

We entered into that negotiation in good faith, and I gently remind Labour Members of Parliament who were here before the last election that again and again I asked the right hon. Gentleman and Labour MPs to condemn the strike actions and they refused to do so, because we know of their links to their union paymasters—[Interruption.] I will just say “train drivers” and leave that hanging in the air.

When I asked the right hon. Gentleman during Health and Social Care questions in July whether he was going to cut services or whether the Chancellor was going to raise taxes for the junior doctors pay rise, he assured the House that any pay rise would be affordable. How affordable does his deal look now? He has given resident doctors an inflation-busting pay rise for being on strike, and he is paying them for the days they were on strike. He did that with no reform and no productivity improvements attached to it, and with more strikes threatened for next spring. Completely foreseeably, that has led to nurses and midwives asking why they should accept less. Simply telling nurses, “We’re on your side” will not heat their homes this winter. The report does not deal with the here and now; it looks only at the past. Indeed, the Darzi report talks about the importance of capital investment, so if the right hon. Gentleman intends to use the report to inform his policy decisions, as he says he does, why is he stopping new hospitals from being built?

There are now 24 hospitals whose futures are at risk, despite commitments from the right hon. Gentleman and Labour candidates during the election campaign. Labour candidates in Watford, Hillingdon, Milton Keynes, Leeds and Basingstoke made promises to their voters that are now at risk under this Labour Government. Patients in Chelsea and Fulham, Truro, Harlow, Plymouth and Kettering will not get the investment and upgrades that they deserve, despite the promises of their Labour candidates. [Interruption.] Do not believe a word when this Secretary of State says, as he is saying now, that it is because of the economy. The truth is that he had been planning to pause those hospitals since May 2023. For those who are wondering, the details are in his health mission paper, which was published to great fanfare in May 2023—page 6, if that helps. He was planning this since May last year, which is exactly why the promises made at the election were so cynical and now need to be revealed.

Take a perhaps unhealthy dose of salt with the right hon. Gentleman’s claim that the money runs only until March next year. Let me help this very inexperienced Secretary of State understand basic Treasury rules. The comprehensive spending review period finishes in March. I wish I could have bound this Labour Government to committing to those hospitals in the next CSR period, but I could not. It is his responsibility and his role to fight for funding from the Chancellor to ensure that the hospitals are built. We promised that we would allocate the money needed, and would prioritise the new hospitals in the next CSR period. It is now the job of this Secretary of State to secure the money from his Labour Chancellor.

Through our plans to invest in more capital projects, we also sought to improve cancer diagnosis and treatment. While outcomes have improved since 2010, there is much more to do. That is why we opened 160 community diagnostic centres, rolled out new lung cancer screening programmes, and expanded the use of artificial intelligence to speed up diagnoses. Again, we note the lack of any mention of those centres or hubs, which would reduce waiting lists and speed up diagnoses, in this supposedly independent review by the former Labour Health Minister.

I want a straight answer from the Minister in their winding-up speech on an issue that is worrying families up and down the country. Cancer is the single biggest killer of children under the age of 14. I launched the children and young people’s cancer taskforce, which brought together top clinicians, leading cancer charities and the Government to combat childhood cancer, and improve diagnosis and access to new treatments. Its launch was warmly welcomed by parents and charities, and experts were lending their time to the taskforce for free, yet this Secretary of State has chosen to pause it. Parents and charities including the Teenage Cancer Trust, Young Lives vs Cancer, and Solving Kids’ Cancer UK cannot understand why the Health Secretary has chosen to stop that work. That is his choice, and the Minister must please explain in the wind-ups why the decision was taken to pause it.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

The right hon. Lady makes the point that cancer is the biggest killer of people under 40, but glioblastoma brain tumours are the biggest killer of people under the age of 40. What progress has there been in the last 30 years in the treatment and diagnosis of glioblastoma brain tumours?

[Victoria Atkins]

I think the hon. Lady did not hear me; I said that cancer is the biggest killer of children under the age of 14, not 40. I know only too well how that terrible brain cancer has hurt her family, and the great loss that she has suffered. I know that she has ambitions for the work that we were doing to get cancer treatments, particularly new cancer treatments, as quickly as possible to patients who are getting towards the end of their life. We will of course support anything that the Government do to help people such as the hon. Lady’s sister; again, I come back to the fact that we all want this to work.

--- Later in debate ---

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Members from across the House will have their own experience of the NHS, but in my case, after caring for my late sister Margaret, who was diagnosed with a glioblastoma brain tumour in 2021, I can say with regret that the NHS failed her, forcing us to travel to Germany when she was at her sickest in order to find some treatment that might extend her life.

In his summary letter published before the report, Lord Darzi told us that he was “shocked” by what he had found, but the 3,200 people who are diagnosed with a glioblastoma brain tumour every year are not shocked. They know just how bad things are. The report has told us that the UK has higher cancer death rates than our European neighbours. For patients with a glioblastoma brain tumour, that is news to no one. In comparison to 33 similar countries, the UK ranks 25th for five-year survival rates. Life expectancy for somebody diagnosed with a glioblastoma is just nine months. There has not been a new treatment in the NHS for more than 30 years, and the diagnosis is still a death sentence.

In 2018, after Tessa Jowell sadly passed away with a glioblastoma, £40 million of ringfenced Government funding was promised for brain tumour research. Of that £40 million, just £11.3 million has been spent. Six years on, and the National Institute for Health and Care Research cannot even get the money out of the door. That is a real failure of Government. In June 2024, just before the election, a roundtable discussed how to spend £15 million of this money, and I have been trying to find out what it decided. Last week, I received a letter from Professor Lucy Chappell, the NIHR’s chief scientific adviser. Disturbingly, she told me that the NIHR largely funds research based on the importance of the topic to patients and health and care services, value for money and scientific quality, but it does not

“allocate funding for specific disease areas.”

The pharmaceutical industry does not work on glioblastoma. If the NHS also does not, who will? Do we keep on baking cakes?