Rare Cancers Bill

Siobhain McDonagh Excerpts

Friday 11th July 2025 Commons Chamber

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

I once more thank the hon. Member for Edinburgh South West (Dr Arthur) for all he has done to bring the Bill forward. We, along with thousands of families throughout the UK, all owe him a huge debt. I am proud to have supported the Bill from the very beginning. I also pay tribute to the ongoing work of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), whose inspirational advocacy has set the example on these issues, particularly for new MPs like me.

I do not think I need take up much time restating why the Rare Cancers Bill matters; every hon. Member who sat alongside me in the Bill Committee knows that already, which is why we reported it to the House unamended. The Minister also knows, which is why the Government have repeatedly pledged their support, and organisations working with rare cancers know too. The Brain Tumour Charity describes this legislation as “a Bill of hope” and Pancreatic Cancer UK talks of its potential to transform survival for rare cancers. That potential sits with us today.

The Rare Cancers Bill takes concrete and common-sense steps to facilitate research into rare cancers, to improve the speed and quality of necessary clinical trials, and to help get orphan drugs—medicines often neglected because they target uncommon conditions—to those patients who so desperately need them. I urge the House to advance the Bill and ensure that its provisions become law as rapidly as possible. So much depends on getting this one right. To that end, I briefly remind the House what exactly is at stake today for families, including my own, throughout this country.

When I spoke on Second Reading, I told the story of Group Captain Pip Harding, my brother-in-law, who was diagnosed with an aggressive stage 4 glioblastoma in February 2024. His prognosis was such that he should not be here today. Pip is married with five children. He has served in the Royal Air Force in the Indo-Pacific, in Afghanistan and in Iraq. I am immensely proud of him, not least because of his battle against this devastating diagnosis.

Pip’s family, friends and those who loved him rallied around him. More than 600 of them set up a GoFundMe page to cover the cost of an experimental cancer treatment, oncothermia, which uses radio frequencies to target and treat malignant cancer cells. I am happier than I can say to be able to tell the House that Pip is alive and well, and that the tumour has shrunk from 7cm to less than 1 cm as a result of that treatment. For Pip’s loved ones, of course, that means the world—oncothermia is winning it for him. It means that there is more time for his family and more time for more treatments to come online to get his health back.

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

It is a matter of delight that the hon. Lady’s brother-in-law is still well and that the tumour has shrunk. But I should say to the House and all Members that that machine, which my late sister campaigned and raised funding for, is currently situated in a private hospital in London because it would get nowhere near an NHS hospital. That is the tragedy of the circumstances that we find ourselves in: our system is so restrictive that we cannot look for new innovations within our NHS.

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

I do not want to detain the House too long. I just want to put on record my admiration for my hon. Friend the Member for Edinburgh South West (Dr Arthur) in guiding the Bill to this point and now hopefully forward—with a former Member of this House, Julie Elliott, now Baroness Elliott, in the House of Lords. When I met my hon. Friend to berate him about why he should take up this issue, I did not know about his father-in-law, but I have to say how proud his family must be of what he has done here. I mention that point because it is a motivator for all of us. When we understand the true desperation of facing these problems, it can often be the driver to make us work harder for achievement.

I am delighted to say that 10 days ago, with the kindness of Mr Speaker, we launched the first glioblastoma drug trial in memory of my late sister. It will be run by Dr Paul Mulholland, who is, regrettably, too well known to many Members. He is Europe’s leading consultant on glioblastoma, based out of University College London, and the trial will include 16 patients at University College hospital who are newly diagnosed. They will have had no treatment and no surgery, and will be treated with immunotherapy. We are excited and delighted by the trial. It opened last Friday and Dr Mulholland met the first recruit last Monday.

This could be the start of great things, but it is the start of a journey. It is a journey that is incomprehensibly difficult and requires a wonderful set of circumstances: Europe’s leading consultant at a big teaching hospital in London, next to a world-leading university; a group of my sister’s friends who campaigned tirelessly to raise funds, raising over £1 million in the last year—the trial will cost something in that order; and a Secretary of State for Health and Social Care who gave us excellent support and intervened to help us to get to the point of starting the trial.

Those efforts are not available to everybody. We need to change things to get more trials. Without trials, there will be no progress, and I know from my own experience that there will be no progress, even with this brilliant Bill, unless we all, as Members, insist on progress and keep an eye on it. I am so thrilled that so many people, on the Labour Benches and in all parties across the House, are united in their commitment to see progress on glioblastoma. We want to see hope not only for glioblastoma victims but for the victims of all rare cancers. By starting with glioblastoma, we start with the worst. We will not cease our campaign until everybody has a fair chance of a cure.

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[Harpreet Uppal (Huddersfield) (Lab)]

There have already been some emotional speeches, which are already making me cry. I thank everyone who has spoken today. I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing this important Bill. [Interruption.] I have started crying already. The Bill is particularly important to me, because my mum died of a brain tumour. Too many families face a diagnosis that often comes too late, with limited access to specialised care and clinical trials.

[Dame Siobhain McDonagh]

Does my hon. Friend agree that the Bill’s mechanism relating to orphan drugs is essential? Unless we can get the pharmaceutical industry to find it in its financial interest to start trials, we will not make any progress.

[Harpreet Uppal]

I thank my hon. Friend for her intervention. I agree with everything she said.

There is no doubt that, for patients and their families, an additional challenge of a rare cancer is navigating the systems themselves, many of which are not built with rare cancers in mind. I know from conversations with residents and organisations in Huddersfield just how isolating that can be. Being told that you have a rare form of cancer, and struggling to get answers or the standard of treatment that others receive, is really difficult. This Bill will play a part in extending the lives of people facing cancer, and it will help their families. Getting targeted research and clear care pathways will be really important, and I have no doubt that improving patient recruitment into clinical trials for rare cancers will mean so much to those families.

Again, I thank my hon. Friend the Member for Edinburgh South West, as well as the Ministers, my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), and all the charities that have pushed this Bill forward.

Children’s Health

Siobhain McDonagh Excerpts

Thursday 10th July 2025 Commons Chamber

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

When we talk about children’s health, we often think about the start of life—safe births, vaccinations and early years support—but we also need to talk about those children whose lives will be short, those with life-limiting and life-threatening conditions. Across the country, families caring for a seriously ill child face unimaginable challenges, yet too often the support they need simply is not there, especially at the end of life and especially at home.

In my constituency, we are incredibly fortunate to be served by Shooting Star Children’s Hospices, which supports over 700 children and families across 14 boroughs and throughout Surrey. However, because the number of children needing that care in each individual borough is small, those children can easily be overlooked. That is the problem with a system built around commissioning at such a local level: when the numbers are low, the needs get lost. That is why the ringfenced central funding—formerly the children’s hospice grant—is so important. It supports hospices such as Shooting Star to provide respite, symptom management, bereavement support and end-of-life care, and helps give families choice at the hardest possible time. I welcome the Government’s decision to confirm £26 million for children’s hospices in NHS England’s funding for 2025-26, alongside £100 million in capital investment across all hospices.

The truth is that the sector remains under real strain. According to Together for Short Lives, the leading voice for children’s palliative care, just 19% of ICBs formally commission 24/7 end-of-life care at home, and a third are still failing to meet even the basic national standards. I have three questions for the Minister: will the Government commit to maintaining and increasing the children’s hospice grant beyond 2025-26? Will they launch a proper review of how children’s palliative care is funded and planned, and will the Minister hold ICBs to greater account to ensure they meet their legal duty to commission that care and report transparently on progress? We are told that the 10-year NHS plan will bring care closer to home, but right now, there is no mention of children’s palliative care in that plan and no clarity on how those vital services will be funded. That has to change.

Rare Cancers Bill

Siobhain McDonagh Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

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

Does the Minister agree that keeping a list of people with rare cancers is only any use as long as there are some drug trials? Last night we launched a first trial, in my sister’s memory, for glioblastoma, with every penny raised by people donating, holding bake sales and running marathons. Is that any way to tackle rare cancer?

[Ashley Dalton]

I congratulate my hon. Friend on the launch of the trial in her sister’s name. We do want to see more research and trials coming forward, particularly for rare cancers. She will be aware of the consortium that the Department has developed to work directly with the brain tumour community in particular, to improve the quality and number of research trials that come forward for funding.

GP Funding: South-west England

Siobhain McDonagh Excerpts

Wednesday 25th June 2025 Westminster Hall

[Several hon. Members rose—]

[Dame Siobhain McDonagh (in the Chair)]

Order. I remind Members to bob if they wish to be called. I ask for some self-restraint, with speeches restricted to six or seven minutes, so that we can get everybody in.

--- Later in debate ---

[Martin Wrigley]

I thank the Minister for the intervention. I am not quite sure what the protocol is; I do not think that that has ever happened. This is a most fantastic debate.

Capital investment in GP practices and buildings is welcome, but we have heard from across the Chamber that we need more. The problems with ICBs and the difficulties with trusts that are in NHS oversight framework segment 4 still impact GPs and how their funding works.

I will push my luck, because the Minister has been very generous with his time and very patient with us all: will he meet me and some practice managers to talk about the complexities of managing the practices with such a level of complication in funding, and to see whether the Government can identify further ways of making it easier to run these businesses, so that they can get on with delivering what they are there to deliver: healthcare for the greatest number of people with the maximum possible benefit? That would be helpful. I thank all hon. Members for their contributions.

[Dame Siobhain McDonagh (in the Chair)]

I respectfully say to Members that, while I do not have the power to stop interventions from people who turn up 45 minutes, an hour, or an hour and three quarters into a debate, speaking on a personal level—I am not the most formal of Chairs—I think it very impolite to make an intervention when you have not had the opportunity to hear from other Members. I do not have the power to enforce that, but if I could, I would.

Question put and agreed to.

Resolved,

That this House has considered GP funding in the south-west.

Terminally Ill Adults (End of Life) Bill

Siobhain McDonagh Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

To me, therefore, the amendment made in Committee that allows the Senedd to have a vote on the entirety of the Bill’s commencement when enacted is highly significant. Although I support much of the Bill in principle and in broad detail, I cannot support amendments 94 and 95, because they would roll back on that.

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

I rise to speak to amendment 12, which stands in my name. I want to be clear that a decision on amendment 12 would not be a vote for or against assisted dying. The amendment is about preventing any Government of any political persuasion from rewriting the very purpose of the NHS, using a small group of MPs in a Committee Room rather than debate on the Floor of the House. The amendment seeks to protect the foundational document of our NHS and ensure that any changes to it are properly debated in open Parliament, as the public should expect. Let me explain why that matters.

In Committee, clause 38 was added to the Bill. The clause gives a future Secretary of State sweeping powers to amend existing health law through delegated legislation. Subsection (4) allows a future Government to change the very purpose of the NHS by amending section 1 of the National Health Service Act 2006.

[Antonia Bance (Tipton and Wednesbury) (Lab)]

My hon. Friend is setting out her concerns eloquently. What concerns does she have that the Bill writes a blank cheque for a future Health Secretary to change the nature of the NHS without parliamentary scrutiny?

[Dame Siobhain McDonagh]

That is the whole purpose of my amendment and my speech. Section 1 of the 2006 Act is the legal foundation on which every NHS duty rests, guaranteeing that our NHS will serve everyone, always. The section, which expresses the promise of

“a comprehensive health service designed to secure improvement…in the physical and mental health of the people of England”,

has remained virtually unchanged since 1946. Those words, spoken by Nye Bevan and enshrined in law, set out the purpose of the NHS: a national health service free at the point of delivery.

[Andrew Pakes (Peterborough) (Lab)]

rose—

--- Later in debate ---

[Andrew Pakes]

I did use the facilities, Madam Deputy Speaker; I apologise for that. I am a gentleman of an age. [Laughter.]

I thank my hon. Friend for taking an intervention. We are about to reach the 80th anniversary of the landslide 1945 Labour Government, which set the NHS in train, and the 77th anniversary of the NHS. Fundamental to that is her point about the NHS being free at the point of need and being about care, compassion and life. What assessment has she made of how the Bill, if it goes through unamended, will fundamentally challenge that great victory and legacy that Labour Members cherish?

[Dame Siobhain McDonagh]

The power to alter the intentions, as mentioned by my hon. Friend, was not in the Bill we voted for in November. That is why I have tabled my amendment: to prevent anyone from tampering with the NHS as founded by our forefathers.

Let us be clear about what clause 38 would allow. It would allow a Minister, through delegated legislation, to rewrite the very purpose of our NHS; it would let them do so without the full scrutiny that primary legislation demands; and it would mean that Parliament could be denied any real chance to amend or reject that change. These are not abstract constitutional concerns; this is about whether the founding promise of the NHS can be quietly rewritten—not through open debate or an Act of Parliament, but by a handful of MPs behind closed doors in a Committee room. Once that pass is sold, there is no telling what future Governments might do or undo.

That is why this matters so deeply, because the NHS is not just a set of services, but a promise—a promise made right here in this House nearly 80 years ago, on Second Reading of the National Health Service Act 1946.

[Ms Billington]

It is important for my hon. Friend to be able to explain in detail what the philosophical and institutional implications are. But, fundamentally for ordinary patients, what does she think the Bill will do to change the relationship between the patient and the doctor?

[Dame Siobhain McDonagh]

Its potential is to alter everything in a very undemocratic manner. In this very Chamber, Nye Bevan told us that the NHS would

“lift the shadow from millions of homes...keep very many people alive who might otherwise be dead...relieve suffering...produce higher standards for the medical profession”

and

“be a great contribution towards the wellbeing of the common people”.—[Official Report, 30 April 1946; Vol. 422, c. 63.]

We have a duty in this place to defend that promise. We cannot allow the promise to be reworded without the full voice of Parliament. We owe it to the public, to patients and to the NHS staff who dedicate their lives to this service, to stand firm and protect what is sacred.

The amendment is simple but its impact is profound. It would ensure that any future changes to the core principles of the NHS must be debated openly, transparently and with the full consent of every Member—no short cuts, no sidestepping, no ministerial overreach. I urge colleagues across the House to support amendment 12, to stand with our NHS and with the people it serves. I urge my side—the Labour side—not to allow the assisted dying Bill to be the trojan horse that breaks the NHS, the proudest institution and the proudest measure introduced by our party in 120 years.

[Calum Miller (Bicester and Woodstock) (LD)]

I rise to speak in support of amendments 21, 103, 104 and 42, tabled by my hon. Friend the Member for Twickenham (Munira Wilson), the hon. Member for Newcastle-under-Lyme (Adam Jogee) and my hon. Friend the Member for Wimbledon (Mr Kohler). As other Members have said, this is a deeply consequential Bill. I want to record my thanks to the hon. Member for Spen Valley (Kim Leadbeater), to all members of the Bill Committee, and to all those who have contributed to its careful scrutiny through the tabling of amendments and debates over them.

The Bill is about the end of life. It is an emotive and sometimes painful topic, and I am grateful to the many constituents who have generously shared with me their experiences and opinions. I have also taken some time to consult palliative care practitioners, including those providing hospice care in my constituency. Those conversations reinforced the awe and admiration I hold for these caring professionals. Their expertise and deep commitment are always impressive. Contrary to the points made by the hon. Member for Gosport (Dame Caroline Dinenage), they are adamant that they can provide sufficient pain relief to the vast majority of those receiving end-of-life care. The issue is about not the efficacy of treatment, but access to it. In this, I echo the powerful points of the hon. Member for East Renfrewshire (Blair McDougall) on the present inequality of access to palliative care.

Amendment 21 would ensure that the availability, quality and distribution of palliative and end-of-life care is published within one year of the Act being passed. When assessing the provision of end-of-life care, it is critical that this House and the public can see how palliative care is being delivered. For the measures in the Bill to provide a genuine choice to those at end of life, palliative care must be much more widely available.

The hon. Member for Spen Valley (Kim Leadbeater) argues that there should be no false choice between palliative care and assisted dying, yet she and health Ministers know that there is a choice as resources are limited. When so many hospices have closed beds due to funding shortages and receive more than 70% of their funding from donations, I am concerned that we may see significant expenditures on a new regime for assisted dying, funded by the state as a health treatment, while the palliative care sector and hospices in particular remain chronically underfunded.

Brain Tumours: Research and Treatment

Siobhain McDonagh Excerpts

Thursday 8th May 2025 Commons Chamber

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

I beg to move,

That this House notes that Brain Tumour Awareness Month took place in March; further notes that there has been no progress in NHS treatment of brain tumours in 20 years and that they are the biggest cancer killer of people under the age of 40; calls on the Government to demand that the National Institute for Health and Care Research take action to spend the £40 million provided by the Government for brain tumour research in 2018 for innovative and meaningful drug trials, following the death of the late Baroness Tessa Jowell; and further calls on the Government to encourage the pharmaceutical industry to undertake research into the repurposing of drugs for brain tumours and to require the NHS repurposing service to consider the repurposing of drugs for brain tumours.

On Saturday 27 November 2021, Margaret collapsed in front of me without warning. She lay on the floor convulsing in epileptic fits. By 4 am, two young doctors at University College hospital told me that she had a brain tumour. On the Wednesday, as I approached her bed on the ward, she said, “Look at that doctor. He can’t look at me—the news from that scan must be really bad. Bring him over.” Of course, as you will know, Madam Deputy Speaker, she was always right.

My brilliant sister Margaret—the fiercest, strongest, bravest, kindest woman I have ever known—had a glioblastoma brain tumour. When it comes to such brain tumours, there is an average life expectancy of nine months from diagnosis and a five-year survival rate of just 5%; there has been no improvement in NHS treatment in 20 years; and the UK is graded 27th out of 29 comparable countries for its performance. Glioblastoma was the only opponent that my sister had never beaten, but over 18 months, she gave it her very best shot.

Standing here, just six weeks before the second anniversary of her loss, I remain as determined as ever to fight for a cure for this savage cancer in the face of what can only be described as indifference from the NHS, the pharmaceutical industries, the National Institute for Health and Care Research, the Medical and Healthcare products Regulatory Agency and, I regret to say, most of the cancer charities. In fighting this, I believe that we can find a path to improved treatment for not just glioblastoma but all rare cancers. However, that will happen only if we—Members of this House, cancer campaigners, patients and the bereaved—make it happen, because the system currently conforms to Einstein’s definition of madness: it continues to do the same thing but expects different outcomes. Don’t get me wrong; the system would like to cure glioblastoma, but it is just proving a bit difficult.

What is laughingly described as the gold standard of NHS treatment has not changed in 20 years. It includes surgery, which does not actually remove the tumour, a brutal eight weeks of radiotherapy, and then as much temozolomide chemotherapy as someone can take, which in Margaret’s case was not very much. Then, nothing from the NHS. Those with savings, homes, pensions or the ability to fundraise use everything they have to travel to other countries where people believe that those diagnosed with a terminal disease should have access to all available treatments. In Margaret’s case, that person was Dr Sahinbas in Düsseldorf. As for those for whom that is not an option—and there are many—our holy, revered NHS expects them just to lay down, take their fate and die. Just as I would not let Margaret lay down and die, we should not let anyone in the UK simply lay down and die from a glioblastoma. Here is how we can change things.

First, we need early diagnosis. In the vast majority of glioblastoma cases, the neuro-oncology multidisciplinary teams can diagnose the tumour from an MRI scan. In most cases, they wait for surgery, which could take a full eight weeks from the MRI. Given that developing groundbreaking immunotherapy treatments are based on giving the drugs ahead of surgery, early MRI diagnosis would allow improvement in treatments and outcomes.

Secondly, we need drug trials. The only way to find a cure for glioblastoma and other rare cancers is through drug trials, but as those with such cancers know, there are none. NHS trials have collapsed and the pharmaceutical industry concentrates on the large, lucrative conditions: breast, prostate, bowel and lung cancers. If we believe that no cancer should be left behind in a country with some of the most innovative pharmaceutical companies and a healthcare system as universal as ours, the Government should broker a partnership between that industry and the NHS to make sure that new or repurposed drugs are trialled for all cancers. They should share the early risk; the NHS should run the trials and the drug companies should be expected to provide the drugs. Will the Minister and the Department of Health and Social Care directly support a test case project for glioblastoma treatment, in which a strategy is developed with AstraZeneca, which has set up a rare cancer unit?

Thirdly, we must keep costs down. Costs are always a barrier to more drug trials. However, trials carried out through the National Institute for Health and Care Research are conducted at a reduced cost. To keep costs down, trials into glioblastoma and other rare cancers should automatically be NIHR-badged, and all funded trials should be given access to NHS resources.

Fourthly, the mission of the Medicines and Healthcare products Regulatory Agency should be reviewed. The MHRA is the gatekeeper of drugs licensing in the UK, and it understandably requires that all data on all trials be published, but in my personal experience from speaking with pharmaceutical companies, that is a barrier to them providing their best and most innovative drugs. While I accept that all information should be published, information on drug trials should be published for their respective cancers. If a drug that was originally for lung cancer is trialled on glioblastoma, that should be recorded separately.

Fifthly, we need to change the purpose of the NHS medicines repurposing project to provide existing drugs for trial. Many of our leading medical oncologists believe that there is already a drug in use that could improve and maybe even cure glioblastoma, but it has never been trialled. That is why I am calling for the repurposing of the NHS medicines repurposing programme; we should add the aim of supplying existing drugs for the treatment of glioblastoma and other rare cancers.

I have submitted these five proposed pledges to the Government’s consultation on the national cancer plan. They are born out of my personal experience of talking to anybody who moves about glioblastoma over the last two years. I am only one MP, with a GCSE in biology, but I hope with all my heart that my submission will be taken seriously, and that the Government will grab it with both hands to ensure that nobody else goes through what my sister went through.

[Madam Deputy Speaker (Judith Cummins)]

I thank the hon. Member for that moving speech. I would like to place on the record my love and admiration for her sister Margaret.

--- Later in debate ---

[Dame Siobhain McDonagh]

Thank you, Madam Deputy Speaker, for your kind words about Margaret. I thank everybody who has taken part in the debate. I appreciate that they have been taken from their constituencies, where there will be great celebrations for the 80th anniversary of VE Day.

I thank the Backbench Business Committee for the debate. I suggested to the Committee that I did not want last Thursday because it was polling day, so when I was offered 8 May, I did not really feel that I could refuse. I say to the Minister, the shadow Ministers and all hon. Members that if we rely on the system as it is, there will be no progress. The only way to bring about progress is to intervene and to challenge. To that end, I am delighted to say that in July we will be launching the first drug trial in Margaret’s memory, to try immunotherapy on people with glioblastoma. We will be doing that only on one site, at UCL and UCLH. That is because the structure of drug trials in the NHS continues to be so difficult—this was identified by Lord O’Shaughnessy in his report—that going to more sites would take years. People diagnosed with this condition have not got years, so we all have to intervene.

Most Ministers in the previous Government and those in this Government have been incredibly well organised and well motivated. I am grateful to the Secretary of State for his intervention, which has made our trial possible at this speed, but unless we personally get involved, no great speeches, wishing or hoping will make a change. The system does not want change. We have to enforce change.

Question put and agreed to.

Resolved,

That this House notes that Brain Tumour Awareness Month took place in March; further notes that there has been no progress in NHS treatment of brain tumours in 20 years and that they are the biggest cancer killer of people under the age of 40; calls on the Government to demand that the National Institute for Health and Care Research take action to spend the £40 million provided by the Government for brain tumour research in 2018 for innovative and meaningful drug trials, following the death of the late Baroness Tessa Jowell; and further calls on the Government to encourage the pharmaceutical industry to undertake research into the repurposing of drugs for brain tumours and to require the NHS repurposing service to consider the repurposing of drugs for brain tumours.

[Jim Shannon]

On a point of order, Madam Deputy Speaker. I am sorry to ask this, but we need to understand what is happening about the trade negotiations and the statement that may be coming. I ask because three of us here—the hon. and learned Member for North Antrim (Jim Allister), the hon. Member for Dundee Central (Chris Law) and I—have planes to catch. I understand that others in the Chamber have made travel arrangements as well. If the statement is not happening, let us go.

Hospitals

Siobhain McDonagh Excerpts

Wednesday 23rd April 2025 Commons Chamber

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

I have a unique case to make in this debate on behalf of my constituents and Merton council. We do not want the new emergency hospital at Belmont, which is in phase 2 of the hospital rebuilding programme. In direct contrast to the hon. Member for Reigate (Rebecca Paul), I have fought this scheme for 25 years against all Governments—my own Government, the coalition Government and the Conservative Government. This plan will take the hospital away from my constituents with the greatest health needs, the largest levels of deprivation, the lowest car use, the highest hospital admissions and the greatest level of chronic conditions, and take it to healthy, wealthy Belmont at a cool cost of £1.5 billion.

The hospital will provide 80 fewer beds than we have at the moment, serve 83,000 fewer patients, and put increased pressure on St George’s hospital in Tooting and Croydon University hospital—both hospitals that the Care Quality Commission has said need fewer patients to arrive at their sites. This scheme would give them more patients. Worse than that, it depends on a 3% annual reduction in lengths of hospital stays and a 3% annual reduction in activity. What hospital in the country has experienced a reduction in activity? It is also based on increased access to mental health services, which should have been provided last year, the development of community paediatric pathways, a child development centre—yet to be seen—and the reopening of the Wilson hospital in Mitcham. That hospital has not been reopened; the money has not been found, so it remains closed.

The scheme is also dependent on an increase in home births in Mitcham and Morden, which has the highest levels of social housing, the greatest housing deprivation and the most overcrowded conditions in the region. This is the Tudor Hart law writ large, where hospital services are taken away from those who need them most and given to the areas that need them least. I ask the Minister: save taxpayers’ money. Already £50 million has been spent consulting on this scheme. Nobody wants it and nobody supports it. Leave St Helier hospital as it is. Spend the money that the Government have on St Helier hospital and give better services to those who need them most.

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?

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[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.

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[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.

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[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.

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[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.