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?

World ME Day

Siobhain McDonagh Excerpts

Wednesday 1st May 2024 Westminster Hall

[Sir Sajid Javid]

Yes, I agree with the hon. Member. Indeed, those guidelines were changed while I was Secretary of State for Health and Social Care. I remember welcoming them, but the expectation of course was that they would be properly followed. As the hon. Member says, in some 70% of cases that does not seem to be the case. We all want that to be addressed. I hope that the Minister will be able to pick up that point when he responds.

Another example of research is a groundbreaking project on long covid and ME diagnostics called LOCOME. It is co-led by Action for ME, the University of Edinburgh and a computational biology company called PrecisionLife. It is hoped that that new project, which is utilising the data that has been gathered from the DecodeME project, will provide insights that will be able to create the first predictive diagnostic tools for ME and long covid. I take this opportunity to thank the charity Action for ME for its world-leading work on the project, its crucial support and the research and campaigning that it does to improve ME research and outcomes.

It is vital that we continue to support organisations such as Action for ME and researchers in this way. The focus of World ME Day in 2024, this year, will be to build a “Global Voice For ME”. In that spirit, it is important that we collaborate with allies across the globe to further research in this area. However, we know that, even with more research, it will be a long journey to achieve our desired outcomes. That is why improving the experiences of those living with ME, and their families, is also vital.

I know from my own engagement that individuals with lived experience often feel dismissed. I recall a recent Channel 4 report that even highlighted the case of a family who saw social services investigate the care of their daughter because they believed that she was being kept in bed against her will. If it were not for campaigning organisations such as Action for ME, the ME Association, the all-party parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the work of incredible individuals such as Sean O’Neill, who I believe joins us today and who has led an inspiring campaign in memory of his daughter, Maeve, the situation would feel almost hopeless. That is how it would feel if we did not have these people battling for more work to be done on ME. It is because of them that the case of this community is being heard, and having served in Government for so long myself, I know that when people speak up with the support of many honourable colleagues from right across the House, the Government must listen.

This year, 2024, marks 55 years since the World Health Organisation officially acknowledged ME. For too long, we have failed to recognise the severity of the condition for thousands of people across the UK. As we mark World ME Day on 12 May, we must renew our commitment to improving outcomes and experiences for everyone affected. It is great to see so many hon. Members from across the House in the Chamber, and I am grateful to everyone who has attended today’s debate in the Public Gallery, as well as those who may be joining online. Where such support exists, there is always hope.

The ambition is to improve the lives of people with the condition today, and to ensure that future generations have a brighter future. Helping make that ambition a reality is now the responsibility of the Minister, and I look forward to his response and the contribution of other hon. Members.

[Dame Siobhain McDonagh (in the Chair)]

I remind Members that they should bob if they wish to be called in the debate.

--- Later in debate ---

[John McDonnell (Hayes and Harlington) (Lab)]

I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) not just on securing the debate, but on the groundbreaking work that he did in establishing the delivery plan. We are all grateful for that.

We all come to this debate with our own experiences. My first constituency case was nearly 30 years ago. I remember it well. It was heartbreaking: a young women who had a full-time job, was bringing up her family with two children and was active in her local community and trade union, went down with a condition that she never understood. It was not recognised for a long time, even by a local doctor. There was a lot of stigma attached to it at that time—I think a few members of the media were running stories like that. It took her years and a lot of support before she could come to terms with it and re-engage fully with her life.

Debates like this give us the opportunity to share those experiences, but they also prompt organisations to send us briefings. I congratulate Action for ME on the excellent briefing that it has circulated. It has brought us up to speed on a whole range of issues and focused us in advance. I want to respond in support of the half a dozen demands made by my hon. Friend the Member for Putney (Fleur Anderson). The first is about the recognition of the consequences and scale of ME in our society. One area that we have not explored enough is the mental health consequences of ME. In the cases that I have dealt with, ME has led people virtually to breakdown, because of the frustration of no longer being able to live an active life, as well as facing all the barriers and the stigma. We do not fully understand the range of consequences.

I fully agree with the point about research. Demand is doubling, at least. I was shocked that the figures in the briefing were so low after all this time and all the debates that we have had. Long covid has also brought a new dimension to the debate. I am receiving lots of representations from constituents about long covid; it is like we are going through the ME process all over again. I congratulate Action for ME. As the right hon. Member for Bromsgrove said, the establishment of the centre of excellence in Edinburgh is a huge breakthrough; it will be a world leader.

I thought that the NICE guidelines were being rolled out more effectively, so I was shocked that 76% of ICBs do not have a specialist service. We need to think about how that has gone wrong and what will put it right.

My hon. Friend the Member for Putney made a point about benefits. The Government are yet again reforming the benefit system, and I am worried about the reforms. I have met with a range of disability groups, and people are petrified. There is real fear out there, including among people with this particular condition. Anyone who has assisted a constituent through the appeal process understands how difficult it is to get it across that someone has a fluctuating condition, as was mentioned. I do not criticise clinicians, but there is still a lack of thorough understanding among some clinicians about the condition.

I want to make one further point, which has not been raised. I have come across case after case in which protection at work has not been in place, and people have lost their jobs, promotion, or access to training and so on. The reasonable adjustments that we thought we had built into the legislation have not been made. That needs to be reviewed going into the next period. There will be new employment legislation, certainly if there is a change of Government, and perhaps whether or not there is a change of Government. There are issues about the quality of employed life that have to be addressed, and this is one of them.

I am grateful for the debate, because I will be able to report back to constituents that Parliament has discussed the matter. I have the same confidence that the right hon. Member for Bromsgrove has: when a group of MPs works on a cross-party basis and makes noise like this, civil servants and Ministers listen. I hope that the Minister can report today particularly on the timing of the delivery plan, which will give us so much hope.

[Dame Siobhain McDonagh (in the Chair)]

I will call Jim Shannon next. If he would not mind, I ask him to voluntarily restrict his comments so that at 5.08 pm I can call the Opposition spokesperson for five minutes and the Minister for 10 minutes, because I think people want to hear what the Minister has to say.

Children’s Cancer Care: South-East

Siobhain McDonagh Excerpts

Wednesday 13th March 2024 Westminster Hall

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

I do not want to take up too much time—I know that lots of people want to say things in this debate—but I would like to speak on behalf of some of the parents and children who have been involved in the consultation. They have made it clear that they want the cancer services to remain at St George’s Hospital—as we would imagine—for practical reasons and particularly transport and parking.

It is St George’s that offers dedicated parking spaces and a drop-off zone directly outside the entrance of the proposed new state-of-the-art children’s cancer centre. We can just look at Angela’s case to see how critical that is. A children’s nurse at St George’s, she has cared for hundreds of kids during her decades-long career, but her worst fears were realised when her own teenage daughter was diagnosed with cancer. Angela has been staunchly opposed to plans to move the services. She said:

“I can’t imagine travelling to Central London for cancer care with a vulnerable child is in anyone’s…interest.

Luckily we were able to drive to St George’s when Meg was here, and for our family it was invaluable. We were able to keep some semblance of normality.”

This is not just about Megan and Angela. Philip has a 10-year-old son, Daniel, who has just finished cancer treatment and spent countless days and nights at St George’s. Philip said:

“You can’t use public transport when your child is immuno-suppressed, and I can’t imagine having to drive into central London every time Daniel needed urgent care.”

Little Jackson Hall was diagnosed with leukaemia in February 2020 after a rash appeared on his skin and would not go away. He was treated by an “amazing team” at St George’s. His dad, Shaun, said:

“If we had to transfer to Evelina it would be added stress and worry and take away what we can give to Jackson.

When we come here there’s a network and protocols in place and it takes the weight off us knowing that we have that here.

If he has a temperature the protocol is to get Jackson to St George’s or the…Marsden within an hour so being forced to go further into central London means there’ll be traffic and nowhere to park and we might not make it in an hour.”

Shaun summed up my thoughts when he said:

“Why change something that’s not broken?”

The services are excellent. They provide a service more cheaply than the proposed changes would. Leave things alone. Let children’s cancer care stay at St George’s.

[Sir Paul Beresford (Mole Valley) (Con)]

I congratulate the hon. Member for Twickenham (Munira Wilson) on obtaining this debate. It is a little interesting that we are having it before we have got the report. We cannot really add to or comment on the report, because we do not have it, but one thing that we will all agree on is that there is no doubt that a centre is required, so, like everybody here, I am waiting for the report with considerable interest.

I listened to the story from the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) about Jackson. It is always a delight to hear these stories—cancer treated by St George’s, with a delightful story to follow it. Equally, however, every hospital that I know of that treats cancer and children’s cancer has similar stories, and St George’s has more than just the few that she has given.

I am a huge supporter of St George’s Hospital. As Members will know, I spent a considerable number of years on its health board when St George’s was being rationalised, reorganised and rebuilt. St George’s is world-class in many respects, although not all, right across the spectrum of medical treatment. The rebuilding that taken place at St George’s has centred on making the buildings as welcoming as is feasible for adults and children and for medical and surgical care. I know St George’s well; it is a delightful, functioning national health service hospital that gives much to our community and that will, if the hon. Member for Twickenham has her way, give much to the whole south-east.

However, access to St George’s is by tube and then by foot or by bus. If someone goes by car, they then have to hope they can park. Hon. Members have said that parking spaces are easily available, but I can remember sitting for ages in the car park at St George’s, especially in the morning, and not being able to park. Some of the consultants I know at St George’s drive in hours early just to get a space for their car in the consultants’ car park. So parking at St George’s is not as simple as has been said.

Public transport to St George’s from many areas of the south-east would be a nightmare. Those coming from the coast would have difficulty; they would not even know where Tooting is, let alone St George’s in Tooting.

[Dame Siobhain McDonagh]

Shame!

[Sir Paul Beresford]

I apologise to the hon. Lady. I will write to people who say they do not know where Tooting is to explain, and I will give them a picture of her.

I have also got to know the Evelina hospital, which is an absolutely amazing place. It is not designed and built for adults; it is designed and built for children. When you walk in the front door, it strikes you that it is a children’s hospital. You immediately go into a tall, spacious atrium, which goes right up, floor after floor after floor—I hope the hon. Member for Twickenham went up and looked down into it when she visited. It is a magnificent building, and one whole floor has been left, waiting for building, in case the report comes forward and says that the Evelina is the choice for the cancer centre. The Evelina also sits next to St Thomas’ Hospital and has access to it. There are specialist carers, along the lines people have been talking about, from St Thomas’ Hospital if required.

It is correct that anyone travelling to the Evelina has to come into central London. Driving in is a problem but, as I understand it, the hospital is prepared to provide specific parking. The hon. Member for Mitcham and Morden mentioned specific parking at St George’s, so the two hospitals are doing the same thing. For special cases, the Evelina will provide special cars for individual patients.

We await the report. It will put the cases together, and we will see what the experts say. I am the nearest thing to an expert here, which is a great big smile, but I have treated children, and treating children, especially east end children, is an art. That is why I would like us to look very strongly at the Evelina if it comes through as the choice. It would be best for kids, and kids are who we are looking at now—kids with cancer and the accumulated diseases and conditions that go with cancer. I am sorry to disagree with just about everyone here at the moment—I emphasise “at the moment”—but, as far as I am concerned, the Evelina is the choice, and I await the report.

Cancer Medicines: Appraisals

Siobhain McDonagh Excerpts

Tuesday 13th June 2023 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mrs Harris. I thank the hon. Member for Strangford (Jim Shannon), who is the closest thing this House has to a national treasure, for securing a debate that is so important to me.

This debate is about appraisals for cancer medicines. As with any debate about cancer in the House of Commons, there will be Members who have a personal connection to the issue. I will not spend a lot of time explaining my family’s situation, but for me this debate is different. It is not like the other debates that we take part in as parliamentarians. For some, we are experts in the field; for others, we are explaining the experiences of our constituents; and for others, we are speaking about what we have heard from stakeholders. My contribution is grounded in the year and seven months I spent caring for my sister, experiencing what the NHS treatment is like at first hand, and suffering as it became clear that over the past 40 years there has been no improvement in the treatment of glioblastoma—a brain tumour. The drug used to treat glioblastoma today, temozolomide, is the same drug that has been used for the past 20 years. That is not a national policy challenge; it is a frustration that I have lived.

When a person is diagnosed with a glioblastoma, they get six weeks’ radiotherapy, followed by six months’ chemotherapy with temozolomide if they can manage it. The drug was introduced in 2005, and it is called the gold-standard treatment in our NHS. That is a bastardisation of the English language. It is not a gold standard. It is not even a plastic standard. Although there are other treatments and drugs on the market for other cancers, the 3,200 people who are diagnosed with glioblastoma each year have had almost no improvement at all. The average life expectancy for someone diagnosed with a glioblastoma is nine months—do not believe the figures that suggest it is 18 months. The five-year survival rate is only 12.9%—just 1% better than the five-year survival rate in 2010.

For other cancers, the story is very different. For someone diagnosed with lung cancer in 2010, the five-year survival rate was 10.3%—not dissimilar to the survival rate for glioblastoma. The difference is that by 2020, the five-year survival rate for lung cancer had doubled to 21%. For some undiagnosed with breast cancer in 2010, the survival rate was 83.2%. By 2020, the five-year survival rate was all the way up to 85.9%. The five-year survival rate for bowel cancer has gone from 58% in 2010 to 60% in 2020.

I do not in any way mean to take attention away from those cancers. I am absolutely delighted that survival rates have increased, that there is innovation and that there are trials across the board. However, when I meet constituents who have had a cancer diagnosis for something other than a brain tumour, I regularly hear that they have had access to experimental trials. I appreciate that that is because I have a south London constituency and we are close to the brilliant Royal Marsden. When it comes to brain tumours, it is not that there are only a few trials; there are zero, with not many on the horizon. There are many reasons why survival rates have not changed for brain tumours in 20 years, but one is in the title of this debate: there are nowhere near enough appraisals for new brain tumour drugs and nowhere near enough clinical trials.

I will give an insight into how difficult it is to get a new drug on the market for glioblastoma. When my sister’s brilliant oncologist, Dr Paul Mulholland, set up a new clinical trial, he could not get the pharmaceutical companies to give him the drugs he needed. As a result, he had to rely on me, a Member of Parliament with no medical training, to write to the pharmaceutical chief executives asking them to donate to his trial. We were successful. We met senior members in four drug companies, and Roche was absolutely brilliant in its response. But why did it take a letter from somebody like me to get the drugs for a new clinical trial, instead of the other pharmaceutical companies responding to Europe’s expert on brain tumours? It completely baffles me, but I suppose that is the world we live in.

This experience tells me that the market is not working. It tells me that because only 3,200 people are diagnosed with a glioblastoma every year, it is not profitable for the pharmaceutical companies to invest in glioblastoma treatments. The market is very small, so it is not worth their while. As policymakers, it is our job to see where the market is working and where it is not. As legislators, it is our job to change, cajole and, ultimately, legislate to make sure that it does work. That has simply not been happening with glioblastoma, for which there has been no improvement in 40 years.

The drug companies will not change on their own. Unless we demand that they invest in those drugs, nothing will ever change; it will go on and on. Believe me, I do not want my worst enemy to go through what we have over the last 18 months. After speaking to some of the experts in the field and having conversations with all the main brain tumour charities, we have been able to develop a four-point manifesto that will make a real difference. As it happens, it will not cost very much either. I would be very grateful if the Minister could respond to that point.

On a personal level, I understand that the Minister is standing down at the next election. He has a year to 18 months to leave a real mark on this area of work. I ask him personally to be up to that challenge, to stand up to the status quo and the establishment in the medical profession and pharmaceutical companies, and to consider our glioblastoma manifesto.

First, we need a target of getting 200 glioblastoma patients into clinical trials each year on a drug that has the potential to change the course of the disease. That would be 1,000 patients over the lifetime of a Parliament. With those trials, we can begin to understand what works and what does not.

Secondly, the NHS should trial on brain tumours every drug that gets licensed to deal with other tumours, as long as there are not indications that it would be dangerous. Repurposing those drugs would be a cheap way to make a huge difference. It is sometimes the only way that makes a difference. The reason for melanoma survival rates of 90% at five years is precisely that: the use of a drug licensed for another cancer purpose.

Thirdly, the NHS should ensure that every neuro-oncology multidisciplinary team has a medical oncologist who is a core member and is required to attend meetings to discuss patients, so that brain tumour patients are not left in a corner of the ward because there is no specialist arguing for them. Unless a neuro-oncologist is in the room, we will not benefit from their ideas or expertise.

Fourthly, the NHS should require that every young—or not so young—doctor, training to be a medical oncologist should go through a mandatory course on brain tumours. At the moment, there is no compulsory training. Doctors have to take two courses on bowel cancer as part of their training, but nothing on brain tumours. Believe me, they do not take that option. The reason that there is nobody on those wards and the research infrastructure is not there is because nobody is required to do the course.

Fantastic work is being done in the world of cancer. There are improvements in some areas with some fantastic successes, which we should celebrate. However, we should have our eyes wide open when we are not making any progress. We should be able to take stock and say, “This is not working; we need to try something new.” In 2018, after Tessa Jowell sadly passed away from a glioblastoma, £40 million of Government funding was promised to fund research into brain tumours, but the infrastructure of treating glioblastoma is so poor that there have not been enough bids to allocate that funding. As of January, just £15 million of the promised £40 million had been awarded; the field is in such a dire situation that we cannot even spend the money that has been specifically allocated to brain tumours.

This is about trying something different. I do not care whether it is Labour, the Conservatives, the Lib Dems, the DUP or the SNP—I will get behind anyone with the political will to make a change. Einstein famously said:

“The definition of insanity is doing the same thing over and over again and expecting different results.”

I think we are getting to that point with the treatment of glioblastoma. It is time to break the mould, take a risk and try something different.

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

I think this is my first time speaking under your chairmanship, Mrs Harris; I am sure it will be a great pleasure. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate, and on his excellent speech setting out the issues with the new NICE methods and processes for cancer drugs. The hon. Member for Mitcham and Morden (Siobhain McDonagh) described him as a national treasure. As a Minister, I was once in charge of national treasures; I feel I lost the opportunity to enshrine his legacy in a Bill before Parliament, during whose passage I am sure he would have intervened.

The hon. Member for Strangford set out an interesting problem, and, like him, I am grateful for the briefing I have received on the matter. I am humbled to follow the hon. Member for Mitcham and Morden. I have been on the cancer treadmill, and I think that, as patients, people become incredibly compliant; they do as they are told. It is often much harder for those who love someone who has cancer. They fight for better treatment and care on behalf of their loved one because it is all that they feel they can do, as the hon. Lady set out.

We need to do so much more on rarer cancers, particularly brain cancers. I quickly googled global survival rates for glioblastoma; the survival rate in the US is 26%, compared with 10% in the UK as the hon. Member for Mitcham and Morden set out. That shows that factors such as access to drugs can make a significant difference to outcomes. I am sure that the Minister heard very much what she said, and many people who are suffering from brain tumours will be grateful for her contribution.

I have no intention of becoming the poster girl for all things cancer. In some cases, I still find talking about my experience of the disease quite hard, but I wanted to speak in this debate because I also find it infuriating that we lag behind so many countries on many cancer-related areas, including access to medicine. However, I want to give some good news on cancer targets from my area. It is extremely worrying for anyone to read front-page news of missed targets, backlogs, delays and so on at the start of their cancer journey, but in Kent and Medway we are fortunate to have one of the top performing alliances in the country for meeting the 62-day standard, with both Maidstone and Tunbridge Wells NHS Trust and Medway NHS Foundation Trust reaching 85%. In fact, MTW, which is where I was treated, has consistently met its targets for the last three years, having kept all its cancer services open during the pandemic. The improvements are generally down to achieving more rapid diagnoses by triaging referrals and sending as many patients as possible straight to their diagnostic test.

A lot of evidence links early diagnosis with better outcomes. Despite having top-notch treatments available on the NHS, the UK still lags behind Europe and the US. There may be many reasons, but my view and that of many others is that the main push should be for diagnosing patients as early as possible to improve outcomes. However, we really cannot afford to get into a situation where we do not have access to the latest treatments; otherwise, outcomes may worsen. There is a conundrum, which can be summarised as: methods and processes versus cost versus data—and it is really hard to squish that triangle into a circle. I met two pharmaceutical companies to learn about this issue. Although I am not naive to its aims, I was struck by the disadvantage that the changes to NICE’s methods and processes could leave UK cancer patients with.

The hon. Member for Strangford outlined the background to the changes so I will not repeat them in great detail, but in summary, in 2022 NICE changed the way it reviews disease severity as part of its assessment process. It introduced the severity modifier and removed the end-of-life criteria, which gave a higher value weighting to medicines for terminal illnesses. That change is likely to negatively impact cancer medicines in particular. Capacity issues, cost containment measures and other commercial environment factors are steadily combining to create a life sciences sector that is disincentivised to focus on cancer innovations or invest in the UK. That in turn will pose challenges to achieving the Government’s ambitions to accelerate access to oncology medicines and meet the policy targets set out in the “Life Sciences Vision” and the NHS long-term plan.

What worries me is that big, global oncology conferences take place—like the recent American Society of Clinical Oncology conference in Chicago—which are brilliantly reported in our newspapers, with references to breakthrough drugs for x cancer sending shivers of hope down the spines of people like me and many others, when the truth is that very few of those drugs will reach our NHS due to NICE methods.

That is when I see the other side of the argument, at least to some extent. We should really be congratulating whoever does the procurement negotiations with pharma to drive down the cost to the NHS so that investment can be made in other areas of cancer, such as diagnostics, although that can be stretched only so far before companies pull their drugs from the market. It is about finding a sweet spot that works well for both.

Data is another challenge. There is a lack of outcome data available to NICE in the full assessment of some medicines. The problem for pharmaceutical companies is that this data is hard to come by. Outside of a clinical trial, they have little or no access to outcome data from the use of the drug in the real world, and if it is expensive, it is hard to prescribe it without a NICE recommendation in the first place—thus we have come full circle due to a lack of evidence and, of course, the increasing cost.

[Siobhain McDonagh]

Does the hon. Lady agree that it seems crazy that in a system as universal as the NHS there should not be access to outcome data? To give just one example, South West London Elective Orthopaedic Centre at Epsom Hospital is the largest hip and knee replacement centre outside of America. It is the lowest for blood risks, and has the lowest infection rates and quickest turnaround. It has its own small charity and keeps the data, making £1 million a year from it. That could go some way towards paying for the latest cancer drugs.

[Tracey Crouch]

I entirely agree. Data sharing will help cancer outcomes full stop, not just in the example she gives. If my GP sent me for a breast screening, for example, the person doing the screening could not currently see whether I have had a cervical screening. Having the conversation about screening for other cancers while having some form of cancer screening is an important aspect of long-term survival rates, so I completely agree with the hon. Lady.

It appears that NICE, through changes to its methods and processes, has probably got stricter on the level of evidence it requires before it will make a recommendation, so that it ensures that there is a survival benefit to the things it recommends, all of which is a potential reason that we should collect and share data better across the NHS. We could allow pharma better access to anonymised NHS data, and some trusts already do so with strict governance in place. Working together in this way would allow us to access the actual impact of a drug when it is used outside of a trial and allow NICE to make a real-world evidence-based recommendation, which would be particularly helpful for rarer cancers such as glioblastoma.

We have to get over the clinical reticence of not using a drug before it has a NICE recommendation, otherwise we will never get the real-world data. Some 80% of cancer drugs recommended by NICE were only recommended if the price to the NHS was reduced, so, given that in the UK clinicians tend not to prescribe without a positive NICE recommendation, the pharmaceutical companies essentially have to drop the price to get the recommendation for the drug to be on the market. In all those points, it is forgotten that at the centre of this is a cancer patient just wanting to get the best possible treatment to live for as long as possible.

We all want positive outcomes for cancer. NICE has committed to keeping its new methods under review. During this time, it is essential that flexibility is maintained when considering disease severity so as to ensure timely and ongoing patient access. Pharmaceutical companies want to be at the forefront of developing life-enhancing, cancer-beating drugs for the market. There has to be a sensible way forward, but at the moment it feels like the changes may have made things worse for current and future cancer patients hoping for breakthrough life-enhancing treatments.

I know the Minister to be a sensible and reasonable person. I hope he will take renewed vigour from what he has heard so far in the debate and will sit down with all the interested parties to see how we can go forward, because without doing so, I fear that on this issue—coupled with others around screening, diagnosis and access on to pathways—we will continue to lag behind other countries in beating cancer.

--- Later in debate ---

[Will Quince]

My hon. Friend is absolutely right, and I regularly meet the pharmaceutical industry, not least because of VPAS, which I will come on to discuss because it has been raised by a number of Members. While I understand the concern, it is absolutely right that assessment of clinical and cost effectiveness reflect up-to-date clinical pathways, evidence and evaluative methods and processes. However, my hon. Friend is absolutely right to say that we should also hear and understand the views and concerns of the pharmaceutical industry so that we have a rounded, balanced view and the full picture, to make sure that there are no unintended consequences because of the action that is being taken.

The hon. Member for Strangford mentioned non-uniform pricing and VPAS, so let me come on to that specifically. The tricky thing is that the negotiations for the next VPAS are currently under way. Given that there are ongoing discussions, it would not be appropriate for me to go into too much detail, because of the commercial sensitivity. It would also be inappropriate to set up a working group to review NHS England’s policy on non-uniform pricing. What I would say is that if changes were made to the wording in the next VPAS on commercial flexibilities, they would be reflected in an updated commercial framework for new medicines.

The hon. Members for Strangford and for Denton and Reddish raised clinical trials. We are doing a huge amount of work in that space because I recognise some of the issues and challenges that the hon. Member for Denton and Reddish set out. That is why we commissioned the O’Shaughnessy review into clinical trials, and why we accepted Lord O’Shaughnessy’s recommendations in full. We should take a step back for one moment and look at the work that we did as a country and an industry on clinical trials, particularly relating to covid. We basically shut down huge numbers of clinical trials to focus on a vaccine. To be fair, this country absolutely led the way in that, and we should be very proud of what we did, but we have not been fast enough in switching clinical trials back on and we have lost some of our competitive edge in relation to other countries, as the hon. Gentleman pointed out. The reality is that it is a race; clinical trials are globally competitive, and other countries, including Spain, have seized the advantage and are fighting hard for market share. We have to make sure we are a competitive place. That is about clinical trials but also our regulatory environment.

The hon. Member for Midlothian (Owen Thompson) made good points about the MHRA. We are absolutely looking at its processes and procedures, and we are putting an extra £10 million into it over the next two years to ensure it is a world-class regulator that is one of the fastest and most effective and efficient. It is already highly respected, but we must ensure that it does things at the right speed. That is very much on my radar, and as I said we are accepting the recommendations.

The hon. Member for Denton and Reddish also raised the cancer drugs fund. Since 2016, NICE has been able to recommend medicines for use through the Government’s £340 million cancer drugs fund, which enables patients to receive promising new treatments for a time-limited, managed access period while further evidence is being collected. That is then considered by NICE when determining whether a medicine should be routinely funded by the NHS. Since that fund was created in 2016, it has helped more than 91,000 patients in England, and more in other places, to access innovative medicines.

[Siobhain McDonagh]

Those 91,000 did not include people suffering from a glioblastoma. We are not anywhere near NICE. We have not got that far. The drugs are not there. There is nothing. None of this works for people with glioblastoma. I do not want to mislead the Minister into thinking that I care only about my sister, Margaret. I draw hon. Members’ attention to early-day motion 1233, in my name, to commend the life of Laura Nuttall, a young woman diagnosed with a glioblastoma aged 18. She died on 22 May. I want to pass on all our condolences to her mum, Nicola, her sister, Gracie, and her father. Laura was a shining light and an ambassador for the Brain Tumour Charity. Although she was told that had only a year to live, she managed to live for four and a half years and secured a 2:1 in her degree. Laura highlighted that brain tumours are the greatest killer of people under the age of 40, who are being let down.

[Will Quince]

I totally take the hon. Lady’s point when she says that it is not all about her sister, Margaret— I know that from her contributions. Often in this place, we draw on our personal experiences, which enable us to bring to life powerfully and emotively what others are experiencing. I thank her for sharing Laura’s experience, and I send my condolences to Laura’s friends and family.

The hon. Lady is absolutely right that the cancer drugs fund can bring forward only innovative medicines that have gone through the clinical trials process. I will be very happy to work with her and meet her again to discuss how we get more research in this space. That is the key to so much, in relation to tacking brain tumours.

The hon. Member for Strangford spoke about the challenges presented by combination therapies. The commercial framework also recognises that realising the full potential health benefits from combination drug therapies can be challenging, given the requirement for commercial confidentiality and the need to maintain competition. Having said all that, NHS England has a proven ability to negotiate commercial agreements that secure combination treatments for patients. Just last month, deals were struck to enable NICE to recommend Keytruda and Lenvima for hundreds of women with advanced endometrial cancer. Progress is being made, but again, I would be happy to discuss the issue further.

Again, I thank the hon. Member for Strangford for securing this important debate and for his continued interest in the appraisal of cancer medicines and access to cancer treatments for NHS patients. I also thank other Members who have made such powerful contributions.

If one message comes across, Mrs Harris, I hope that Members are assured that the Government and I remain firm in our commitment to making the most promising and effective new cancer treatments available to NHS patients. The hon. Member for Denton and Reddish said that this is not a political issue, and I agree. It would be impossible to find anyone in the House who does not want to ensure that patients across the United Kingdom get access to the most innovative and cutting-edge medicines for cancer and other diseases, as quickly as possible. We all have a common endeavour there.

It is important to acknowledge the huge role that NICE has played, with its world-leading health technology assessment. It has enabled NHS patients to be at the forefront of access to new cancer treatments, in a way that also represents value for the taxpayer. I recognise the point that has been well made today, that we must always seek to improve and to go further and faster. I look forward to working with all Members present and others across the House to achieve that.

Eye Health: National Strategy

Siobhain McDonagh Excerpts

Wednesday 17th May 2023 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mrs Harris. I thank my hon. Friend the Member for Battersea (Marsha De Cordova) for securing this debate, which is about such an important issue. I know that the debate is about a national eye health strategy, and I agree with all the important points raised by my hon. Friend, who continues to be an inspirational campaigner on disability rights. I would go so far as to agree with all hon. Members who have contributed to the debate so far. But I want to focus on something more specific.

In April 2021, the NHS started a scheme that provided sight tests and dispensed glasses to children in special schools in the familiar surroundings of their own schools. The NHS special school eye care service was created after a shocking statistic came out: children with learning disabilities are 28 times more likely to have a sight problem than other children. Four out of five children with a severe learning disability attend a special school, and decades’ worth of studies and reports have all identified higher levels of sight problems in children who attend special schools. We found out that 40% of children in such schools need glasses, but because children have complex needs, they are often unable to get a check-up. Their behaviour makes it hard, and families are hard pressed to attend all the appointments.

[Dr Offord]

The hon. Lady is entirely correct that children with special educational needs often have sight problems, but such problems affect not just those children but children with behavioural problems. They often have behavioural problems simply because they cannot see, and so learn, in the classroom.

[Siobhain McDonagh]

The hon. Member is absolutely correct, and we know from the special school eye care service that so many pupils’ behaviour improves as a result of having glasses.

As I have already said, many people with severe learning difficulties find it very challenging to go to appointments or have their eyes examined. We have learned that attending an eye care appointment has been such a stress that 55% of children with special needs miss the appointments that they have had booked. That is not just an extra and unnecessary stress on the NHS, which certainly does not need that at the moment; it also means that the children are not getting the eye care that they need.

That is where the NHS special school eye care service comes in. It was just common sense: bringing eye care into special schools solves the problem of missed appointments and ensures that thousands of children who would have had their eyesight disability ignored get the healthcare that they deserve. That value cannot be overstated. Children with special needs have enough on their plate; if they also suffer from eyesight problems, but cannot explain what is wrong and can never get the problem checked out by a doctor, it must be awful.

Parents and special schools have praised the scheme, because school is a familiar place for children and the service is also cost effective for the NHS. It is one solution to many of the problems in eye care: it helps to get children out of hospital services, and it addresses health inequalities for this patient group for just tens of pounds. In 2015, I visited my local school for children with severe special needs, Perseid School in Morden—an all-through school for three to 18-year-olds led by the inspirational headteacher Tina Harvey, who retires after 20 years in July. I thank her on behalf of all her pupils and families and our entire community for her tireless and brilliant work in her school, which is rated outstanding by Ofsted.

At the school, I met Alyson, a mum, who told me that her daughter Ellie was getting used to eye care in the familiar environment of her school, and not having to take time out for hospital eye clinic appointments. That gave Alyson one less thing to worry about as a parent, and had greatly reduced Ellie’s anxiety. I invite the Minister to come to the school to see the work being done there; his predecessor has visited. It is important that I can show him how the scheme looks on the ground.

After the scheme was extended to 83 special schools, giving 9,000 children eye care that they might not otherwise have had, the further roll-out of the scheme was halted in August 2022 for an evaluation, which has not yet been published. The NHS now says that the scheme is just proof of concept, and that the proof-of-concept service will end in July—in two months’ time.

Parents, schools and eye care providers are absolutely gutted. More than anything, they are confused about what will happen next. There is still no sign of the evaluation, so there is a very real prospect that there will be no eye care services at all in schools after September 2023. I hope that will not be the case. I know that the Minister recently met charities and eye care bodies to hear about the service, but it still is not clear what NHS England will do.

I do not have many huge asks of the Minister today. I just want a very simple fix that will give certainty to parents. Will he publish the evaluation as a matter of urgency? If he can make sure that the evaluation is published, I have no doubt that it will provide evidence of the clinical need for such a service. Once we have the evaluation, we can start to look to the future of the scheme. I am convinced that NHS England should continue the day school service after July; I hope that he can see why that is absolutely common sense.

I conclude with a quote from a new special school, Kingsley High School, which has used the service. Reshma Hirani, assistant head, says:

“This service should be part of the NHS core offer so that it never stops. My pupils have struggled to access eye care in the community and now they have, quite rightly, something that is going to transform their lives. Well done NHS England for thinking about schools like Kingsley and our children. As a Qualified Teacher of Children and Young People with Vision Impairment I can now put in the support that children need, with the confidence that I have all the right information to hand. It really is the gift of sight.”

I reiterate that NHS England’s evaluation still has not been published. Given that there are only a few weeks before the service will have to start making staff redundant, I urge the Minister to publish the evaluation as soon as possible, so that parents, children and everyone involved has the certainty that they absolutely deserve.