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.

Brain Tumour Research Funding

Siobhain McDonagh Excerpts

Thursday 9th March 2023 Commons Chamber

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

My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.

[Hilary Benn]

I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.

Dr Matt Williams, a clinical oncologist, is quoted in the report:

“Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”

That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:

“It’s devastating and living with a time bomb in your head.”

That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.

--- Later in debate ---

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

I crave the indulgence of the House for the speech that I am about to make.

On 27 November 2021, my beautiful, unique, tough, resilient, successful sister collapsed in front of me and had a series of fits. Five hours later, in University College Hospital, two doctors named Henry told me that they suspected that she had a brain tumour, but as this was the NHS, MRI scans were not done at the weekend, so they could not confirm their diagnosis. On Wednesday, when I stepped on to her ward, she demanded—and everybody here who knows her will be able to hear her say it—that I ask the ward doctor to come and speak to her. She said, “It’s bad, Siobhain, because he can’t look at me.” And it was.

For the woman who had run Labour’s only two consecutive successful general election campaigns, and achieved her ultimate ambition to see two full-term Labour Governments, the diagnosis was of a glioblastoma. All her toughness evaporated, and there was my little sister with a diagnosis that meant that she might have nine months left—a condition for which there was no cure, for which treatment had not made progress in over 30 years. Just before Christmas, she had the tumours removed by two amazing female surgeons, Róisín Finn and Anna Miserocchi at the National Hospital for Neurology and Neurosurgery, but this was post Brexit, so there were not enough nurses to keep all the operating theatres open, and Margaret’s operation was cancelled three times. I leave it to Members to guess my reaction to that, and how we got that operation in the end.

The best piece of advice I have ever received in my life, and I have received many bits of good advice, was from the clinical nurse specialist. When we asked her where Margaret should go for post-operative treatment— St George’s, down the road from where we live; the Royal Marsden, around the corner; or to stay at University College—Róisín said, “We have Professor Paul Mulholland, and he is the best. He is the best in the UK, and he is the best in Europe.” I want to confirm to the House that he is the best. He is why Margaret is still alive.

What you get when you have your tumour removed, if you live that long—many people do not—is six weeks’ radiotherapy, followed by six months’ chemotherapy with a drug called temozolomide. That drug was introduced in 2005, and since then there have been no variations to the gold-standard treatment in our NHS, so when you read articles such as the one in The Times on Monday, telling us all how successful cancer treatment in the UK is—how 85% of people with a breast cancer diagnosis, 55% of people with a bowel cancer diagnosis, and 98% of people with a prostate cancer diagnosis will get to live for 10 years—do not believe that it is the same for brain cancer. The Times may have chosen a brain as the photograph for the top of the article, but those statistics do not apply.

Margaret had her treatment in early new year 2022; like so many, she could not go through with it—the treatment would have killed her. At that point, where do you go? There were no alternatives. It is not that there are a few trials: there are no trials, and there is nowhere to go. So, like so many of us who are lucky enough to have friends and family and access to money, we looked to the private sector and international travel. Margaret has been on a course of treatment with nivolumab, a Bristol Myers Squibb drug that was seen to be unsuccessful in the treatment of brain cancer, and Avastin, and has been going monthly to Düsseldorf, Germany for four days. That might seem an easy thing to do, but taking a seriously ill person on an aeroplane to a hotel, with no access to healthcare and no emergency services, would be foolhardy unless there was nothing else in this country. There was, and is, nothing.

The help that we received from Dr Sahinbas and his wife, who runs their small clinic in Germany, with hyperthermic treatment was amazing. Their kindness was overwhelming, but there were times when I thought that I would not be able to get Margaret on the plane—that somebody would stop her because she was so unwell. There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?

By June 2022, Margaret had a scan, and they could not see the tumour. When I asked Dr Mulholland, “Is this normal for this treatment?”, he said, “Normal? I have never tried this on anybody before.” Nobody has ever had this drug so early in their treatment or at the quantity that Margaret has had it, or at the same time as hyperthermia therapy. Those who know about Margaret’s experience have come to me and sought support from Dr Mulholland because there is nothing else. The number that the NHS is currently forsaking and, for the lucky people who can get the funds to do it, abandoning to international travel is nothing short of a complete and utter national scandal. I wonder what my mum who came here in 1947 to train as part of the first generation of NHS nurses from Ireland would say about the NHS abandoning her daughter.

But things can be different. Things can be better—maybe not today, maybe not tomorrow, maybe not next year, and maybe not within Margaret’s lifetime—and they can be different if we want them to be different. I ask the Minister to please not give the NHS or the cancer research charities any more money until they guarantee that at least 200 sufferers every year get access to a trial—that would be 1,000 patients over the lifetime of a Parliament—because with those trials we can begin to understand what works and what does not.

The Minister should give no more money to the NHS trainers until they commit that every young doctor training to be a medical oncologist has to go through a course on brain tumour. At the moment, there is no compulsory training. The reason why there is nobody on those wards and nobody doing the work is that we are training nobody, and we are training nobody because nobody is required to do the course, and it was like that 15 years ago with melanoma. Some 15 years ago, the survival rates were so poor, but somebody came up with the idea that immunotherapy would be successful, and today we see successful survival rates equivalent to the best in any discipline. We also see young doctors wanting to take on the specialism, because it is exciting, there is hope, there is a future and there are alternatives.

Who in their right mind today would become a medical oncologist in glioblastoma? There is no hope, no future, no trials—nothing. It would have to be someone with the belligerence and tenacity of my sister Margaret, and we have found that person in Paul Mulholland, but there needs to be more Pauls and more determination. We must have access to trials for 200 people and the training of medical oncologists, and we must require the pharmaceutical industry—because we will make no progress without it—to trial every drug that gets licensed to deal with tumours on those with brain tumours, so that there is access to existing drugs that can be repurposed.

I am sorry about the time I have taken for this speech, but I want to tell the House that when I go to bed tonight I will keep my ear open for Margaret to hear her call my name, I will get up and I will go into her room, and it may be that she is asleep and I have imagined that she has called me. I accept that. That is my duty. It is what I have learned from my family, from my faith and from my politics. I accept that. That is my duty. It is what I have learned from my family, what I have learned from my faith, and what I have learned from my politics. I accept my responsibility. All that I want is for the NHS, cancer research charities, and pharmaceutical companies to stand up and accept their responsibility, and give some hope to the 3,200 people who will be diagnosed with a glioblastoma this year.

[Mr Deputy Speaker (Mr Nigel Evans)]

That was a very brave speech, Siobhain. And please send our love from Parliament to Margaret.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

First, let me congratulate my hon. Friend the Member for St Ives (Derek Thomas) on securing this debate on a very important topic and for his personal commitment to making progress on this devastating condition. Like him, I pay tribute to the life and work of Tessa Jowell, who, after a long and distinguished career on these Benches, left a legacy that lives on in the numerous initiatives that the Government are supporting.

I also thank hon. Members from across the House for their valuable interventions and comments today— I will come to them in turn—especially in regard to NIHR support for cancer research, the Tessa Jowell Brain Cancer Mission and our commitment across Government to cancer research funding.

Before I turn to the contributions of individual Members, I want to touch on Government commitments, particularly the Baroness Tessa Jowell Brain Cancer Mission. As my hon. Friend the Member for St Ives said, in 2018 the Government announced funding through the NIHR of £40 million over five years for brain tumour research as part of the brain cancer mission. I would like to draw on Tessa’s words. She said that this

“is not about politics but about patients and the community of carers who love and support them. It is…about the NHS but it is not just about money. It is about the power of kindness”.—[Official Report, House of Lords, 25 January 2018; Vol. 788, c. 1169.]

We are grateful to all those who have provided care and support and who have campaigned for better funding for research, and to those involved in brain tumour research for keeping this nation at the forefront of scientific progress. Research, as many Members have set out this afternoon, remains key to progress. There are many challenges with brain tumour research, some of which have been set out today, but as Tessa implored us, we must not leave this in the “too difficult” box. I will now try to address the comments made by hon. Members in turn.

My hon. Friend the Member for St Ives rightly praised the work of the Realf family, whose petition led to significant funding and focus on brain tumour research. He rightly pushes us to ensure that we are spending the allocated funding on brain tumour research, and he asks us to look at the NIHR’s processes to make them more user-friendly. He followed the report in calling for a brain cancer champion, as did the right hon. Member for Hayes and Harlington (John McDonnell). I want us to be world leading in this sphere, so I will take that point away and ask the Secretary of State. Indeed, my hon. Friend the Member for St Ives might pick this up and run with it himself, given how he runs the APPG and given this superb report.

I will come back to research more generally a little later, but my hon. Friend talked about applications and the application process. As part of the £40 million fund, all the applications assessed as fundable in that open competition have been funded—in total, that is 13 of 95 applications, and a further three are under consideration. I very much encourage researchers to make those applications. We have to get it right, and I will come back to this later.

My hon. Friend touched on funding committees, which play a hugely important role. We have a diverse range of applications for funding and, as a result, there is a broad range of expertise sitting on the panels. The panels may or may not include people who specialise in brain tumour research. I understand the frustration of applicants, and work is already being done by the Tessa Jowell Brain Cancer Mission, through customised workshops and the work of researchers, to enable people to resubmit their funding applications after understanding why they were not successful.

The right hon. Member for Leeds Central (Hilary Benn) rightly praised the work of Brain Tumour Research. I understand his point about not only patients but consultants hearing the phrase, “There is nothing more I can offer or do for you.” We have to do what we can to change that. He rightly says the brain is a very complex organ, which is why treatment and research are so complicated—I will come back to this point if I have time.

My hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) talked about the heartbreaking experience of David. She asked us simply to get the money into the hands of researchers, and I wish it were that simple. Understandably, this does not sit in the hands of Ministers—it would be totally inappropriate if it did. It sits in the hands of clinicians and experts in this field, but I completely understand the sense of urgency with which she makes the point. We spend around £1.3 billion a year on research, and we have to ensure that it is well spent and leads to research that gets treatments and drugs to patients in this country and around the globe.

The hon. Member for Mitcham and Morden (Siobhain McDonagh) gave the most powerful testimony, sharing her sister Margaret’s experience. I am so very sorry to hear of her experience, which must have been very difficult to share. She spoke about cancer diagnosis and treatment, and we have come on so much, but I recognise that this is not universal across all cancer types and that we have much more to do.

The hon. Lady made a very strong case for clinical trials, and she spoke about the need to travel abroad. We cannot do every clinical trial in the UK, although I sometimes wish we could. There is global competition, but I give her my personal assurance that clinical trials are high on my agenda. I want to make sure that our United Kingdom has the best environment for clinical trials. We have launched the O’Shaughnessy review, and we are working with the NHS, the MHRA and NICE. We are trying to encourage patients through the NHS app to sign up to clinical trials. Of course, raising awareness of clinical trials is a huge area of interest and importance for me.

[Siobhain McDonagh]

I completely understand all the work that the Minister and everybody else is doing, but can he explain why it is not happening?

[Will Quince]

I will specifically address brain tumour research, but clinical trials are taking place in acute trusts across the country. There are fewer clinical trials in this area than I would want, and I will explain why a little later. Finally, I pass on my very best wishes to Margaret.

My hon. Friend the Member for Buckingham (Greg Smith) urges us to act on the report’s recommendations, and he is right to do so. I will look at those recommendations very carefully. He touched on the £40 million, and I will come on to that a little later. He also mentioned childhood brain tumours. There is insufficient time to go into the level of detail I would want to on that subject, and I would be happy to meet him and members of the all-party group to discuss what more we can do on childhood brain tumours and the treatment thereof.

The right hon. Member for Hayes and Harlington talked about the courage and fortitude of families. He shared Sonya’s experience and talked about the importance of support for loved ones, and I will raise those issues with my counterparts at the Department for Work and Pensions. My hon. Friend the Member for Meon Valley (Mrs Drummond) shared the impact on the Fearn family, which outlines why it is so important that we get this right. She touched on the importance of awareness, and how in this area there is a high prevalence of late presentation and late diagnosis, and the impact that has on prognosis.

The hon. Member for Luton North (Sarah Owen) told Amani’s story and how the family had to fundraise to travel to take part in an international clinical trial. Of course, I send my condolences to Amani’s family, and I would be happy to meet Khuram and Yasmin to discuss this further. The hon. Lady asked where the money allocated is. It sits within NIHR and remains there; funding is allocated and it awaits suitable, fundable applications, so that is where we need to focus our efforts.

My hon. Friend the Member for Great Grimsby (Lia Nici) rightly praised the work of the all-party group, which probably makes this the right time to turn to the report, “Pathway to a Cure”. I very much welcome the group’s investigation and report. I acknowledge the problems and issues that have been identified. Let me be clear: we want to fund more high-quality research to accelerate the field and help patients. The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.

Members from across the House will understand that this debate is not necessarily the place for a detailed response to the report and every recommendation. Notwithstanding the strong case made today on the importance of research, we have to tread carefully. This is not the first condition into which I have probed and asked lots of questions about why we have not been funding all the research, and why funding is sitting unallocated, given the bids that have come in. We have to tread carefully because the clinicians and scientists rightly push back, saying that lowering the scientific quality bar for access to scarce public research funds, which would not be won in open competition, is unlikely ultimately to be a good solution. We must get this right, and at the heart of that is ensuring that we support applicants to make high-quality bids, which will then translate into funding awards. Of course, we want to fund the best science to help patients and ensure that our country remains at the forefront of scientific progress.

All Members, from across the House, rightly mentioned the crucial importance of research in tackling cancer. A theme of the report and the debate has been that of co-ordinating action along the translational pathway; that starts with the fundamental science and early translation, typically supported by the MRC, and goes through to the applied health and care research, which is funded by the NIHR. Working with the NIHR, the MRC has developed guidance and toolkits for teams to help them to navigate the scheme that is best suited to their proposal. However, I have heard today that we are not giving the right support to those making applications, and where applications are rejected we need to look into that further.

Special Schools Eye Care Service

Siobhain McDonagh Excerpts

Wednesday 30th March 2022 Westminster Hall

[Hannah Bardell (in the Chair)]

I will shortly call Siobhain McDonagh to move the motion. I will then call the Minister to respond. There will not be an opportunity for the Member in charge to wind up, as is the convention for 30-minute debates. I call Siobhain McDonagh.

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

I beg to move,

That this House has considered NHS Special Schools Eye Care Service.

I am delighted to lead a debate on a hugely beneficial development for the children who are often the most overlooked and yet most in need of targeted healthcare. The NHS special school eye care service has long been in the offing, originating from the stark statistic that 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 a higher level of sight problems in children attending day special schools.

I was first alerted to the issue when I visited my local special school, Perseid in Morden, in 2015. The school has an exceptional record of innovation, with a fantastic headteacher. I was delighted to learn that the Minister also knows the school from her recent visit to see the service in action. In 2013, Perseid began to work with the charity, SeeAbility, to offer sight tests and dispense glasses in the school environment.

A user-friendly report on what the children could see was part of the scheme for parents and teachers. Parents like Alyson told me on the visit that her daughter, Ellie, was getting used to eye care in the familiar environment of school and not having to take time out for hospital eye clinic appointments. That provided one less thing for her to worry about as a parent and had greatly reduced Ellie’s anxiety.

I was so impressed that seven years ago I initiated a debate and the Minister at the time, Alistair Burt, readily gave his time to visit the project and see the benefits for himself. The Department of Health and Social Care then granted innovation funding for the SeeAbility project to expand in other day special schools and report on its findings. As well as finding a huge level of vision problems and a need for glasses in particular, it found that children were not accessing their right to an NHS sight test in the community. Only one in 10 children has ever had an NHS sight test, and over four in 10 have no history of eye care.

NHS England has a responsibility to ensure equitable access to sight tests and primary eyecare, but there was a clear picture of unmet need. Moreover, it was clear that where services were targeted, it was only down to motivated eyecare professionals filling a gap, usually through secondary care. The project found that almost half of the children had accessed or were under the care of a hospital eye clinic, but often for routine eye care such as a sight test.

Fast forward to 2018 and, to its huge credit, NHS England accepted that it lacked a strategic approach to targeting much needed NHS sight tests and to improving primary eye care for people with learning disabilities. It began working collaboratively with eye care professional bodies and learning disability charities, first on a proposal for an NHS special school eye care service with the potential to reach 130,000 children, but also on longer-term plans to improve community optical practice access, too—pathways for the children not at special schools and adults with learning disabilities. They exist in only a few areas of the country.

The new NHS special school eye care service model does not exist anywhere else in the country, because it provides a one-stop shop for multidisciplinary eye care through full NHS sight testing, glasses dispensing, and specialist lenses and testing kits, alongside the report on a child’s vision and liaison with hospital eye clinics and teaching staff. It is important to put on the record that clinical backing for the service has come from all of the eyecare professional bodies and colleges, and from Public Health England.

In 2019, I was pleased to attend an event at Perseid, with NHS England in attendance, to celebrate its commitment, which was signed off at a senior level earlier that year. The service has therefore been promoted as a long-term proposition. Although the pandemic knocked everyone off course, I understand funding proper began in April 2021. We are in the early days as the service is in its proof of concept phase, although it is important to put on the record that the pilot is not about the need for a service. That is beyond doubt. It is a phase that will help evaluate an appropriate fee and glasses dispensing service, and therefore the best way to operationalise nationally. The service is now up and running in 97 special schools, 91 of which are day schools, with a total pupil population of more than 12,000. Clinicians from Bradford to London, Cheshire to Durham, are also under contract to deliver the service.

Some of the new NHS teams have only just begun their work, but the early picture is of much unmet need, with many children not having had a sight test before and with a high need for glasses. So far, so good, but some ambiguity has crept in recently, which is the reason for calling today’s debate. Back in 2019, wording in “The NHS Long Term Plan” specified that dental, hearing and sight checks would be delivered in residential special schools, but that was in addition to a wider pledge in the same plan to improve access to eye care for children with learning disabilities. However, it now appears that NHS England is promoting the need to establish the service in residential special schools, and recruitment has stopped for new day special schools.

Anxieties are building about whether the long-term intention is to limit the service to a few thousand children in residential special schools only, despite all the important work done so far, and about what that ambiguity means for day special schools where there is now a new NHS service—for schools such as Perseid and children such as Ellie. There is talk of evaluation, but does that raise the prospect of a halt in day special school services, which have only just got off the ground, and for how long will we have to wait for evaluation?

As I have outlined, there is no doubt about the need for reform. That much is sure. I am sure that it cannot be the intention to send children who are now being seen by a service, some of whom have already been discharged to it by hospital eye clinics, back into hospital eye clinics, particularly as there is a separate NHS programme that is actively trying to reduce out-patient eye clinic use. I remind the House that one study found that 54% of children with disabilities do not attend their eye clinic appointments because of the difficulties they have—something that a special school service does not experience, as children who miss a visiting clinic one day can be seen quickly at the next and their place taken by another child who has been waiting to be seen.

Tens of thousands more children with severe learning disabilities attend day special schools than attend residential schools, and the residential school population is decreasing, with no residential special schools at all in some areas. How will a focus on residential special schools address the bigger picture of a huge cohort of children, young people and adults with learning disabilities missing out on the NHS eye care they need? Paring back a service to a much smaller number of schools—if that is the plan—misses the bigger picture of unaddressed health inequalities and leaves unreformed the NHS sight testing scheme for patients with a severe learning disability seen in optical practices or day special schools.

It has already been wonderful to read of the Minister’s recognition of the potential for the service and the work of Perseid School. I know that she already recognises the folly of sending children with learning disabilities into out-patient eye clinics for sight tests, as they are some of the busiest places, with the longest waits for appointments. Only yesterday we saw the publication of the Government’s ambitions for the special educational needs system. If anything, this is a programme of work that delivers outcomes for SEND children on so many levels. Let us get the Department for Education on board, too. It already recognises the need for glasses in mainstream schools through its “Glasses in Classes” initiative.

I conclude with a quote from a new school, Kingsley special school, which has just started with 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 finish by asking the Minister to reassure me today that the Department of Health and Social Care and NHS England will publicly reaffirm the commitment to the special school eye care service and push on with the job of establishing it. Ongoing evaluation can still happen to understand how to fully operationalise, while ensuring that children get the service. These children deserve an equal right to sight.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Ms Bardell. I thank the hon. Member for Mitcham and Morden (Siobhain McDonagh) for securing this important and timely debate. As she said, I have visited Perseid in her constituency and seen its incredible work at first hand, as well as the work that SeeAbility does on assessing young people’s eyesight and supporting them with glasses and their bespoke needs, which are not always able to be supported on the high street—it can be difficult for parents and children to attend appointments elsewhere.

People with learning disabilities experience a higher prevalence of visual impairment than the general population. The hon. Lady said they are 28 times more likely to have a serious sight problem. More than 40% require the use of glasses. Very often, children with learning disabilities have specific issues on the fit of glasses. When children are able to get glasses that fit, teachers tell us of the difference in their behaviour, mood, anxiety and ability to learn. That difference makes it even more vital that this group have access to eye testing and services.

I reassure the hon. Lady that we are keen to ensure that eye testing is available for children with learning disabilities. NHS England and NHS Improvement are responsible for the contracting of the testing service to meet local need. All children under the age of 16, or 19 in full-time education, are entitled to free NHS sight tests on the high street, but I recognise that attending a high-street sight test is easier said than done for some children with learning disabilities. High-street services are available for some children with learning disabilities, and these services can meet many children’s needs. However, such children often do not like crowded, busy places and going into a high-street optician whom they do not know and where the environment is different from what they are used to can be quite difficult.

SeeAbility and other charities do a lot of work to support high-street opticians to make them aware of specific needs, including familiarisation visits, extended and split appointments, as well as adapting how the sight test, which can be very difficult for some children, is undertaken. Some children might need three or four visits just to put on a pair of glasses and have the eye test.

The hon. Lady mentioned the anxiety of her young constituent Ellie, and her mum, about going for a test. For many children who do not have a learning disability, going for an eye test is not an issue, but a learning disability or autism can mean additional challenges and I fully understand that.

A hospitalised service is also available. It can provide routine eye-care services and ongoing care but, again, there can be challenges with hospital visits. Departments are busy, often in out-patient settings, with multiple patients and healthcare professionals, and for children with learning disabilities, that is a difficult environment as well.

We therefore have the special schools proof-of-concept pilot. The hon. Lady is right that the long-term plan has made the commitment to ensure that children and young people with a learning disability, autism or both in residential schools have access to eye checks. It is important that that group of young people, too, have the facility to have their eyes tested and to have ongoing support and supervision with glasses or whatever treatment is recommended. That recognises that children and young people in special residential schools are likely to be placed a distance from home, so the option of a high-street optician or local hospitals is almost impossible. Having residential provision is a key part of the service that we want to make progress with.

To progress that long-term plan commitment, the proof-of-concept programme started pilots in residential and day schools in many parts of the country—London, the north-west, the north-east and Yorkshire. More than 93 special schools are participating in the programme, with more than 3,000 children having received an eye test, of whom more than 1,300 required and received glasses.

Sight testing in special residential schools means that children receive their eye care in a familiar place. I am sure that that the hon. Lady appreciates that the residential setting also needs the services that the day school in her constituency has received. We are able to share a child’s visual ability and needs between parents, children and teachers, and share how that is likely to develop and impact their learning. When children need glasses, they are provided free of charge, including a spare pair, so that children are not left without glasses should they break or lose them.

Fundamentally, it is right that we evaluate the proof-of-concept model, and the hon. Lady is right that that phase is coming to an end. In July, NHS England will review the proof-of-concept model, gathering information and feedback on the experience, looking at the effectiveness of the model in residential and day schools, and listening to the stakeholders, including providers such as SeeAbility, and the teachers and staff involved. The information will be looked at and further decisions about future roll-out considered.

The hon. Lady touched on the work of SeeAbility. I saw at first hand its extensive knowledge, and how that is used in practice with children who have difficult needs in addition to any eye problems, and its full understanding of how that fits together. Given the rapport that the people at SeeAbility have with the children, they can do checks on their eyes. Without that rapport and experience, checks would be difficult. I fully appreciate and thank SeeAbility for all its work in special schools, in particular in London.

[Siobhain McDonagh]

SeeAbility is very worried that, by raising this issue, it will be seen as just trying to keep its work. It wishes the Minister to be absolutely clear that its concern is for this invaluable service to remain in the special day schools that it already exists in, and for other children and young people to get the opportunity to have that life-changing service as well.

[Maria Caulfield]

I absolutely take on board the hon. Lady’s point. There is no impression at all that SeeAbility is touting for work. In fact, I would say the opposite: it demonstrated to me the value of its work and the value that similar organisations could provide if the services were rolled out to residential schools and other day schools.

I reassure the hon. Lady that NHS England will be evaluating the proof-of-concept programme when it comes to an end in July. I very much acknowledge her point that she wants to know how long that evaluation will take and what the process after will be. I am happy to tell her that I will speak to NHS England about that. It is not something that I, the Minister, will be deciding, and nor will I be looking at the evaluation. However, having seen it for myself and having heard the hon. Lady’s words today, I am conscious that there is some uncertainty about the future of the service. I think there is certainty for residential schools, but once July comes and NHS England starts the evaluation, I am happy to keep a close eye on that and to work with the hon. Lady so she has some certainty about what will be happening.

We have local commissioners as well as national commissioners. The Health and Care Bill will provide integrated care boards that will be able to commission local services. I am not sure if the hon. Lady has spoken to any of her local commissioners about what they envisage for eye testing in day schools, but I am happy to meet her to talk through the particular options in her constituency, to see if local commissioners are looking at this and to iron out some of her points about the proof-of-concept pilot coming to an end in July, the evaluation process going forward and potential options after that.

[Siobhain McDonagh]

The Minister will be aware that the problem with these services is that they are small and difficult to set up on a local basis. Given the pressure that the NHS is under to do big things and to commission work that large numbers of people need, this sort of specialist service gets left behind, except where an individual is personally committed to it. That does not happen everywhere, not because people are bad but simply because they have so much on. It is important that NHS England takes on this service as a whole and is committed to it as a whole. Will the Minister help me, and any other Members who are interested, to secure the opportunity to speak to NHS England?

[Maria Caulfield]

I take on board the hon. Lady’s point that NHS England is responsible for the roll-out of this programme and for the evaluation of the proof of concept. I am happy to organise a meeting with her and NHS officials to discuss this, so she has some certainty that she can take back to the parents and teachers at Perseid, who value this service very much. I am happy to do that because I am keen that the hon. Lady’s questions are answered and that she has some confidence.

I reassure the hon. Lady that the service I have seen is second to none, and I have seen the difference it makes. We are committed in the long-term plan to providing that service in residential schools, but I take her point that not all children have access to residential schools and they are not available in all parts of the country. Where day schools are available, the proof of concept model seems to have made a difference.

[Siobhain McDonagh]

The Minister is being generous with her time, but I am sure she understands why I am so passionate about this service. It is not just great quality for the children, but it helps the teachers there is an easier way of learning. A parent of a child with severe special needs has a huge number of appointments to attend, as well as the demands of other children and their work. Just getting their child into a high-street or hospital eye clinic is yet another problem that takes time, is difficult to do and causes a bit of mayhem when they get there. This scheme works for everybody: the children, the schools and the hard-pressed parents.

[Maria Caulfield]

I commend the hon. Lady for her campaign. She makes her points very well. Given that the proof of concept will be re-evaluated in July, a good way forward will be for us to meet with NHS England before then, to iron out some of her questions. I hope the hon. Lady is happy with that suggestion and, with that, I bring my remarks to a close.

Question put and agreed to.

Health Inequalities: Office for Health Improvement and Disparities

Siobhain McDonagh Excerpts

Wednesday 26th January 2022 Westminster Hall

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

It is a pleasure to serve under your chairship, Mr Twigg. I congratulate my hon. Friend the Member for Bootle (Peter Dowd) on securing this particularly important debate.

The Minister will be aware of the Tudor Hart law: the areas with the best health are more likely to receive better health services. As my late mum—a lifelong nurse—would have said, “Much gets more.” There can be few greater examples of that than in south-west London, where an imminent planning application proposes to open a new hospital in healthy, wealthy Belmont, but at a cost: the downgrading, in the heart of a pandemic, of both Epsom and St Helier Hospitals. In the wild west of south London’s NHS, it is almost as if coronavirus never happened. Under those reckless plans, St Helier will lose its A&E, intensive care, children’s unit, maternity services, renal services and 62% of its beds to a wealthier area of considerably better health—so much for levelling up.

We have seen this plan on repeat. Funding is allocated and everyone pretends that three possible sites are being considered for development: Epsom, St Helier or Belmont. Evidence of widening health inequalities is presented by the bucketload, but a reason is always found to choose Belmont as the winning site. The reality is that, at the time of the latest decision, there were more than twice as many people with bad or very bad health within a mile of St Helier than within a mile of Belmont. The local population is significantly larger, with considerably more dependent children and elderly people. It is a plan that flies in the face of any supposed commitment to tackling health inequalities.

The programme points to its deprivation analysis—a document that considered deprivation by borough, rather than by proximity to each of the possible sites. Why does that matter? It matters because it disguises huge inequalities within boroughs, such as the 10-year difference in life expectancy between parts of Merton.

The true analysis of deprivation could not be clearer. Some 42 of the 51 most deprived areas in the catchment are nearest St Helier. Given that, hon. Members can surely see how ridiculous it is that the Belmont site received a higher score for supposedly tackling deprivation. Is it any wonder that health inequalities keep widening? While the programme considered old age as a decisive factor in the location of acute services, the depressing reality is that old age in Mitcham looks very different from old age in Belmont.

Health inequalities in south London are stark, and not just by geography. Black, Asian and minority ethnic residents are more likely to have underlying conditions such as diabetes, lupus and kidney failure and are at a higher risk of developing heart disease and hypertension. Black women are five times more likely to die in childbirth than white women, and are more likely to require neonatal or specialist care baby units. Such facts are of paramount importance for this hospital reconfiguration, as 64 of the 66 areas across the catchment with the highest proportion of BAME residents are nearest St Helier. Just one is nearest Belmont. Under those plans, many women will see maternity services moved further away. The programme’s solution is to encourage more women to have a home birth, which is obviously dependent on the risk to mum and baby and is currently chosen by just 3% of women in the catchment area.

The reality is that my constituents will not travel to Belmont. It is quicker from every corner of Mitcham and Morden to reach St George’s Hospital or Croydon. That is a completely terrifying prospect, because St George’s is already coping with too many women having children there, its A&E is in the bottom quartile for space standards, and the Care Quality Commission has demanded that fewer patients attend the site.

Where does this leave us? The planning application for the Belmont site is imminent, and the cost of the proposals is soaring—the latest estimate is almost £600 million. Improving St Helier would not only keep services where they are needed most, but save £161 million. I ask the Minister to take the unequivocal evidence that I have presented and, if she genuinely wants to close health inequalities under her watch, insist that these proposals are reconsidered. Stop wasting taxpayer’s money and leave these vital services at St Helier’s current site.

Oral Answers to Questions

Siobhain McDonagh Excerpts

Tuesday 23rd November 2021 Commons Chamber

[Gillian Keegan]

We know that the prevalence of children and young people with a mental health condition has increased—in some cases, it has increased massively. That is why we remain committed to increasing investment through the long-term plan. Also, we have consulted on the potential to introduce five new waiting times standards, including for children and young people and their families and carers presenting to community-based mental health services. In addition, NHS England and NHS Improvement have announced an additional £40 million to address the impact of covid on children and young people’s mental health, including for eating disorders. Since 2014, extra funding has been going into children and young people’s community eating disorder services every year, but we know that we have more to do. This extra funding will enhance the development of more than 70 new and improved community eating disorder teams, but there is no doubt that there is much to catch up on. We are also introducing services into schools for young people.

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

When the chief inspector of hospitals placed St George’s in Tooting into special measures, he warned that the

“emergency department was not large enough for the number of patients that passed through it and privacy and dignity were compromised.”

Given the report by the British Red Cross in this morning’s edition of The Times highlighting the causal link between A&E attendance and deprivation, does the Minister understand the further huge impact that moving acute services from St Helier to wealthy, healthy Belmont will have on A&E attendances at St George’s?

[The Minister for Health (Edward Argar)]

Forgive me, but I fear the hon. Lady may not have moved her tabled question.

[Siobhain McDonagh]

I was just so keen to ask my question!

[Edward Argar]

I can answer the hon. Lady’s supplementary question, but would it be in order for me to answer her tabled question and then the supplementary?

[Mr Speaker]

Yes.

[Siobhain McDonagh]

6. What recent assessment he has made of the impact of the proposed downgrade of services at St Helier hospital on the delivery of acute services at St George's hospital.

[Edward Argar]

I am grateful to the hon. Lady. To answer the tabled question, no recent assessment has been made of the changes associated with the Epsom and St Helier reconfiguration, including proposed changes to some services outside the new Sutton site. The hon. Lady will know that these proposals have been through consultation, judicial review and the independent reconfiguration panel, which all supported the plans as being in the local population’s interest. The Secretary of State agreed with their advice.

Turning to the hon. Lady’s supplementary question, I am grateful to her and I know how strongly she feels about the issue, but I take her back to the point I have just made, which is that these proposals have all been through extensive consultation and extensive legal process and been looked at by the independent reconfiguration panel. Those processes all concluded that what is proposed is in the best health interest of the population.

Covid-19 Vaccine: Take-up Rates in London

Siobhain McDonagh Excerpts

Tuesday 9th March 2021 Westminster Hall

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

May I begin by making it clear that I am not here to raise criticism for criticism’s sake? I am here because I understand how imperative it is that the vaccine programme is successful. Although I welcome the scale of the programme and the number of vaccinations delivered, I am extremely concerned about the vaccination take-up in my constituency, and the inconceivable decision to open the two new vaccination centres miles away from the NHS declared low take-up wards of concern.

Let me briefly explain the geography. The borough of Merton is split in two: Mitcham and Morden, and Wimbledon. Merton’s inequalities in health are stark, with an eight-year difference in life expectancy between parts of Mitcham and parts of Wimbledon. The Minister will be aware of Tudor Hart’s inverse care law—that the areas in the greatest health are then statistically more likely to receive better health services.

Look no further than Merton. When the state-of-the-art Nelson health centre was opened in one of the wealthiest, richest wards of Wimbledon, Mitcham received the “Wilson portacabin”. When lateral flow testing was introduced at community pharmacies, they were opened everywhere but Mitcham. When a decision was made to relocate acute hospital services—guess what? The proposals moved them miles further away from the most deprived areas, with the statistically worst health. While many of these decisions are baked into decades of inequality, the location of a vaccination centre is a decision for here and now.

Here is the state of play: there are two centres in Merton; one in Wimbledon and one in Mitcham. However, take-up of the vaccine across the borough has varied significantly and, as ever, the devil is in the detail. Merton has 25 middle and lower layer super output areas. Of the 12 with the highest vaccination take-up rates, 11 are in Wimbledon. In all 12 Wimbledon areas, over 93% of over-70s have received their first dose. Compare that with Mitcham and Morden, where seven of the 13 areas are still below 90%, and Mitcham West, where the vaccination take-up was just 81%. That means that one in five residents have been offered, but not accepted, the vaccine.

I recognise the breadth of factors as to why this could be, and that accessibility of the vaccination centre is only one. However, it is a significant one, particularly given that, of the two new large-scale vaccination centres that are set to open in Merton, both are in Wimbledon—two centres, miles away from the wards with the lowest take-up areas, which also have statistically lower levels of car ownership. Are we not supposed to be breaking down barriers, rather than throwing up even more?

I am not calling for Wimbledon to lose their services, but the Minister must surely see the absurdity of this decision.

[Sir Christopher Chope (in the Chair)]

I will have to limit the last two speakers to three minutes each. If they have not seen it, there should be a countdown clock at the top of their screens to help them keep to the time limit.

Covid-19

Siobhain McDonagh Excerpts

Monday 22nd February 2021 Commons Chamber

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

I will use my short time to emphasise the critical importance of accurate information on local surge testing. At 5 o’clock on 1 February, the Health Secretary announced that the South African variant of coronavirus had been discovered in part of my constituency and that all residents of the CR4 postcode would be tested. By 5.15 pm, my inbox was full. The actual area being tested, Pollards Hill, covers a quarter of the postcode, but residents in Mitcham, Lavender, Cricket Green, Longthornton, and even Colliers Wood and part of Tooting, all rightly expected that they too would be tested. They heard terrifying warnings that they must stay at home, using tins at the back of the cupboard, despite no additional national lockdown rules applying.

Uncertainty spread rapidly right across CR4. Schools prevented vulnerable and key worker children from attending; nurseries and childminders closed; key workers stayed at home; Hotpoint refused to visit homes and repair washing machines, and Boots in Sutton refused to do eye tests for CR4 residents. People felt they were under house arrest even though they were not in the area to be tested.

While I sincerely thank each and every Pollards Hill resident who took a test—and I am grateful for the extraordinary operation conducted thanks to local volunteers, the New Horizon Centre, the NHS and Merton Council staff—I cannot stress more strongly to the Minister the importance of clear and accurate communications from the Government.

I also say to the Minister that people will take a test only if they can afford to self-isolate. Some 70% of people who should be self-isolating are not doing so. That is not just a chink in our armour but a gaping hole in our defence. Those on low incomes and in insecure work often cannot do their job from home and, quite simply, they will not get paid unless they go to work. In order to take a test, they need to be confident that they will have the money to feed their family and pay their bills.

The more people spreading the virus, the more cases we have; the more cases we have, the more families who lose a loved one and the longer the lockdown and its consequences continue. A successful track and trace system is vital if the road map outlined today is to be met—and Minister, everybody wants it to succeed.

Covid-19

Siobhain McDonagh Excerpts

Tuesday 12th January 2021 Commons Chamber

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

I had arranged a speech about schoolchildren’s access to the internet, but as I was sitting here waiting to speak, I decided that I wanted to say to the House, to the Minister and to you, Mr Deputy Speaker, that I have become increasingly alarmed at comments from Ministers, and comments in the papers and the rest of the media in the past few days, driving the message that people are not following the rules. This has been in order to make people feel bad about themselves. However, when I look at the places in London that I know have the highest rates of coronavirus, I see a straight line to poverty. I suggest to the Minister that if we actually want to drive down rates further, we have to give more support to people to self-isolate if they are contacted by Test and Trace and told that they have been near somebody who has got coronavirus. If we want to encourage carers and support workers to take up lateral flow tests, we have to give them the support to do it. Who wants to know that they have got the virus if they cannot afford to take the time off work? If the choice is feeding three children by going to work or ignoring those uncomfortable symptoms, I suspect I know the decision that most of us would make.

The boroughs in London that have the highest rates are those with the worst housing, where there is a family in every room, where they share a bathroom with people they do not know. What do we do for those people to ensure that they are in a position to self-isolate? I understand that in New York the way they drove rates down was by providing people who did not have it with the money, the hotel room, the food—they even offered to walk their dogs!—to encourage them to self-isolate.

Rather than the siren calls against people who are doing their best, what we need to do as a Government and as a society is say to people, “Go and get the test. We will help you to have your time off work. We will help you to treat your symptoms, because we want to put an end to the virus.” No help to them means increasing rates for all of us.

--- Later in debate ---

[Jo Churchill]

I thank my hon. Friend, and I would say a couple of things. Of course I will take that away and mention it to the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi). I would also reiterate the Minister for Health’s comment to my hon. Friend during his opening speech that if at first we do not succeed, we will try, try and try again. It is really important that people feel secure, and that it is not just one hit. If someone has missed their appointment—there may be valid reasons why people cannot get there—we will keep trying over and over again to ensure that as many people can receive the vaccination in as swift a time as possible, because ultimately that is how we will be safe.

Many people mentioned how brilliant pharmacists and their teams have been. We are starting to roll out the vaccine to community pharmacists through the pharmacy network over the course of this week, and building up next week. Many people also mentioned supply. This is a process of driving more and more capacity into the system to make sure that as we build a system—from the mass vaccination sites, in one of which the mum of my hon. Friend the Member for Hazel Grove is working, cascading down through our communities and into more rural sites—those in care homes can get vaccinated without having to leave their care home. This is about making sure we are using GPs and pharmacists across our network, and mobilising the armed forces, who, as we heard in this place earlier today, have been absolutely at the forefront of making sure we get kit such as PPE to the right place, and have been out there helping with testing and helping with the vaccine roll-out. This has been a national effort and a team effort.

[Siobhain McDonagh]

Could the Minister comment on the supply of something fundamental: oxygen? I wrote to the Secretary of State on Saturday about supplies of oxygen to Epsom and St Helier trust, which had a specific problem, but it is not solely Epsom and St Helier—in London, a number of intensive care units are under great pressure and are worried about running out of oxygen.

[Jo Churchill]

I refer the hon. Lady to the in-depth answer on exactly that point that my right hon. Friend the Secretary of State gave during Health and Social Care questions this morning, when he said that there is no national shortage of oxygen in the system. He explicitly outlined the challenges and what is being done to mitigate them.

Pharmacists are being brought online, as are many other parts of our system, including all the staff working hard behind the scenes to keep vital services going and to keep people safe. I reiterate that all front-facing health and social care staff in category 2 can access vaccines, including all dentists and their teams; I think nurses and optometrists were the other professions mentioned during the course of the debate.

We are entering a critical period in our fight against this virus. As my hon. Friend the Member for Milton Keynes North (Ben Everitt) said, there are challenging days ahead—we are not there yet. We are dealing with a new, more transmissible variant of this virus that risks overwhelming our NHS, so we had to put in place these tough but vital rules to slow the spread of the virus. I know how hard these rules have been, not only for those we are asking to follow them but for most of us—it goes to our very core. We did not come into politics to stop people doing things.