Dame Siobhain McDonagh
MP for Mitcham and Morden · Labour · United Kingdom
“Q5. In a capital city still scarred by the loss of 72 lives in the Grenfell fire, we have a second equally flammable and deadly risk. In bedrooms and corridors across London, low-paid deliverers for Deliveroo, Just Eat and Uber Eats are charging the tools of their trade: lethal lithium e-bike batteries.”
“I am therefore delighted that NHS London announced up to £57 million to expand and modernise St Helier’s emergency department. However, that cannot be the end. St Helier needs renewal. Only days later, there was an announcement that disrepair in the women’s services block meant that it would have to close.”
“The walk-in centre at the Wilson hospital in Mitcham, which once treated patients every day until midnight, even on Christmas day, has gone. Out-of-hours GP services have been reduced. Those patients have not disappeared; they now go to St Helier.”
“A number of constituents who work as nurses in the A&E department at St Helier hospital asked me to come to see for myself what they were dealing with. They asked me to come late on a Monday morning, rather than a Saturday or Sunday night as I had anticipated. What I saw was deeply troubling.”
“St Helier hospital has the fourth best maternity unit in the country, the only exclusively NHS-run assisted conception unit in south-west London, and a specialist gynaecology ward where nurses are highly trained in counselling. Yet all that is set to close next May because of the need for emergency repairs.”
“I thank the Petitions Committee and my friends from Brain Cancer Justice, who I affectionately think of as the provisional wing of the all-party parliamentary group on brain tumours. In July last year, we launched Margaret’s trial at University College London hospital.”
The complete record
Every one of 600 lines we hold for Dame Siobhain McDonagh, in date order, each linked to its source. Free to read, in full, without an account. Page 6 of 12.
“The all-party group on households in temporary accommodation will be leading a campaign in the coming Session to provide a cot to every family with a child under two living in temporary accommodation. Whether or not the Government provide desperate families with a cot, we will still need the plans and the policies to build more houses. That is why I was delighted to hear my right hon. and learned Friend the Leader of the Opposition raise in his conference speech the issue that I and many others have worked on in the past few years with Professor Paul Cheshire of the London School of Economics: building on the grey belt. Within London’s green belt alone there are enough non-green sites surrounding train stations for more than 1 million new homes.”
“The quality of temporary accommodation is almost universally poor and, shockingly, there is not even a requirement that families with children under two should have access to a cot. That is important because, after reading the data from the national child mortality database, we know that 34 homeless children died between 2019 and 2021 as a result of the temporary accommodation they were housed in—most of them were under one. The most likely cause of death is sudden infant death syndrome because of a lack of safe sleeping provision, such as cots. In the fifth largest economy in the world, children are dying due to a lack of access to a cot. Surely there was room in the King’s Speech for a commitment to ending that shameful statistic.”
“After 13 years of Tory governance, we heard a King’s Speech that ignored the real problems that many of my constituents face every day. The problem I hear about more than any other in my weekly advice surgery is the chronic lack of social housing. I see numbers of constituents evicted and placed in temporary accommodation outside London, hundreds of miles from their home. Merton may have the lowest number of families in temporary accommodation, standing at between 400 and 500 families, but that is 400% more than the norm. It is small in comparison with the neighbouring boroughs of Croydon, which has 4,000 families in temporary accommodation, and Wandsworth, which has more than 3,500. Councils across the country are threatened with bankruptcy because they simply cannot afford the temporary accommodation bill.”
“In the time between the King’s Speech last Tuesday and today’s debate, we have had not only a former Prime Minister parachuted into a new Cabinet job, but yet another Housing Minister. That is 15 Housing Ministers in the last 10 years, four more than the number of Chelsea managers over the same period. It is simply not possible to build the houses we need with that level of chop and change, and when the average life expectancy of a Housing Minister is less than nine months. What can our new Housing Minister look forward to in the next parliamentary Session? We have finally had sight of the Renters (Reform) Bill, but whether it means we will see an end to section 21 no-fault evictions is anybody’s guess, as that depends on reforming the courts.”
“Einstein famously said, “The definition of insanity is doing the same thing over and over again and expecting different results.” That is what we have been doing for the past 30 years with the treatment of glioblastoma. We can do better, and Margaret’s legacy demands nothing less.”
“The reason why there is nobody on those wards or in the research infrastructure is because nobody is required to do the training. Who can apply for the research funds if there is nobody in the field? If we do those four things, we have a chance of some hope. I have not just whisked up this four-point plan; it is the result of meeting experts in the field, including none other than Dr Paul Mulholland, Europe’s leading brain tumour oncologist. If we carry out those four steps, experts think we can drastically improve treatment for everyone diagnosed with a glioblastoma. Some have even said that we could find a cure for glioblastoma within 10 years.”
“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 doctor training to be a medical oncologist should go through a mandatory course on brain tumours. At the moment, the Royal College of Physicians requires no compulsory training. Doctors have to take two courses on bowel cancer as part of their training, but not a single course on brain tumours.”
“Secondly, the NHS should take every drug that has already been licensed to deal with other tumours and apply them to clinical trials on glioblastoma brain tumours. That has not yet happened because glioblastoma is a very small target market for the pharmaceutical industry, and such investment is not very profitable. The Government must either encourage or force the pharmaceutical companies to provide the drugs for these trials. Applying those existing drugs would be a cheap way to make a huge difference. It is sometimes the only way that makes a difference. Universities should act as partners in these trials. They should be snapping up the opportunity to carry out research in this area, instead of leaving the field untouched.”
“Member for Colchester (Will Quince), and the shadow Secretary of State for Health, my hon. Friend the Member for Ilford North (Wes Streeting). I have also met clinicians, charities, families and universities, and last week I met representatives of the top pharmaceutical companies in the UK to discuss why we are where we are. Having built up a clearer picture of where we are, I know that if we try something different, we can give people diagnosed with this deadly disease some hope. So here is something different. First, we need a target of getting 200 glioblastoma patients each year into clinical trials on drugs that have 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 could begin to understand what works and what does not.”
“In 2010, 83% of people diagnosed with breast cancer survived for five years. By 2020, 86% got to live for five years. In 2010, 58% of people diagnosed with bowel cancer survived for five years. In 2020, we managed to bring that figure up to 60%. However, for people diagnosed with a glioblastoma, there has been no progress and no hope that things will get better. In 2010, the five-year survival rate for people diagnosed with a glioblastoma was 11.9%. Ten years later, in 2020, the survival rate was almost identical: just 12.9%. Although the treatment and life expectancy of people diagnosed with a glioblastoma has not changed in 30 years, I feel more hopeful today because, since I made this speech in March, I have met the Minister for Health and Secondary Care, the hon.”
“Universities have ignored glioblastoma for years, too. Glioblastoma is not even on the research agenda. Many universities are focusing their resources on trials on mice, neglecting the 3,200 real people who are crying out for new research and clinical trials. It is a pretty grim landscape, but it has not been like this for people diagnosed with many other cancers. People with breast, bowel and lung cancers have had the hope of research, clinical trials and funding promises being kept. The Government, universities and pharmaceutical companies have come together to make a concerted effort to change things, and they did. Just look at what we have done for people with lung cancer. In 2010, only one in 10 people diagnosed with lung cancer survived for five years. By 2020, life expectancy had doubled.”
“Those who have the money travel abroad for private treatment, safe in the knowledge that the NHS has nothing to offer them. Those who have a support network but who are not rich enough, are forced to crowdfund and to fly thousands of miles to access treatment. The rest, sadly, have to accept their fate. There is no hope. They just have to wait. If they are lucky, they get to nine months. In March, when I made my first speech about glioblastoma, I felt the same way that I have always felt. I was filled with hopelessness, appalled that the disease has been ignored for so long and left at the bottom of the “too difficult” pile for 30 years. The Government have not touched the sides of the £40 million they allocated for research into glioblastoma. After five years, they have spent just £12 million, a quarter of the amount promised.”
“In fact, I will make this speech over and over again until we have turned a corner. My speech today is about glioblastoma brain tumours. It is the deadly disease that my wonderful sister, Margaret, suffered from for 18 months, and it is a deadly disease with which over 3,200 people are diagnosed every year. For every one of those 3,200 people, there was a time when a doctor sat them down in a room and gave them the bad news—the worst news. I can talk about that because, sadly, I have been in that room with Margaret. What they tell people is that there is no hope. The life expectancy for someone diagnosed with a glioblastoma is, on average, nine months and, after a basic course of treatment, the NHS leaves them to die.”
“I beg to move, That leave be given to bring in a Bill to set a target for the number of glioblastoma patients who take part in clinical trials each year; to require training for medical oncologists to include training relating to brain cancers; to provide that any drug that has been licensed for use on tumours must be trialled on people with brain tumours; to make provision in relation to neuro-oncology multidisciplinary teams in the NHS, including a requirement that each such team must include a medical oncologist; to require manufacturers of drugs licensed to treat tumours to make those drugs available in specified circumstances for clinical trials relating to brain tumours; and for connected purposes. I hope the House will hear me today, because I have made this speech before and have absolutely no doubt that I will make it again.”
“But it is not going to happen on its own, and it is certainly not going to happen if we carry on trying the same things we have been trying for the last 30 years. 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. Margaret’s life requires nothing less.”
“Unless a neuro-oncologist is in the room, we will not benefit from their ideas or expertise. Fourthly, the NHS should require that every doctor training to be a medical oncologist should go through a mandatory course on brain tumours. At the moment, the Royal College of Physicians requires 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 the brain tumour option. The reason why there is nobody on those wards and the research infrastructure is not there is that nobody is being trained or is excited to do the job. If we can do those four things, we can have some hope. I have spoken to Dr Paul Mulholland, the fantastic oncologist at University College Hospital, and he feels that he could find a cure within seven years.”
“Secondly, the NHS should repurpose every drug already licensed to deal with other tumours for clinical trials on brain tumours. That has not happened yet, because glioblastoma is a very small target market for the pharmaceutical industry. The Government must either encourage or ultimately force the pharmaceutical companies to provide the drugs for these trials. Repurposing those drugs would be a cheap way to make a huge difference. It is the only way that we can make a difference. 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.”
“I promise that this speech will get a bit brighter. I said earlier that the biggest insight I have gained through this process is that the treatment of brain tumours on the NHS has not improved in 30 years. The next thing I learned is equally important: it does not have to be this way; there are solutions, we just need to try something new. And here is my something new: my four-point plan to transform the outcomes of people diagnosed with a glioblastoma. 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.”
“You can imagine the irony with which I read that text. But it is not the same for all cancers. We know that great things have been done. For lung cancer, in 2010 the five-year survival rate was 10.3%, not dissimilar to the survival rate for glioblastoma; the difference, however, is that by 2020 the five-year survival rate for lung cancer had doubled to 21%. In 2020, the five-year survival rate for breast cancer was 85.9%. There has been a concerted effort by clinicians, charities, the Government and families to make sure that people with breast, lung and bowel cancer live longer, as they should. The sad truth is that brain cancer has been forgotten about, and because only 3,200 people are diagnosed each year it is not profitable for the pharmaceutical industry to invest in it and find a cure.”
“In my case, I took a very ill Margaret on a plane to Germany every month. Over the last decades, we have seen a transformation in hope and life expectancy in relation to some cancers, but absolutely zero progress for brain tumours. Members do not need to take my word for it; they just need to check the facts at a glance. The average life expectancy for the 3,200 people who will be diagnosed with a glioblastoma in the next year is nine months. The five-year survival rate is only 12.9%. The sad facts speak for themselves: nothing has changed; nothing has improved; and if we keep carrying on down the same path, nothing will ever improve. On Friday, I received an unsolicited text from Cancer Research UK, which told me that together we are beating cancer and powering progress, and I was to see how far we have come.”
“When a person is diagnosed with a glioblastoma, they get eight weeks’ radiotherapy, followed by as much chemotherapy with temozolomide as they can manage. That drug was introduced in 2005, and it is called the gold-standard treatment in our NHS. I can tell you that it is not gold standard; it is not even plastic standard. It does not cure anyone; it extends the life of very few people. Margaret could take only four to six weeks of it before her kidneys collapsed. What else are you offered? A lifetime of paying your taxes, working hard, doing your best, and there are no drug trials; there are no alternatives; there is no hope. Perhaps the unspoken advice is just to go home, lay down and wait to die. The only hope that does exist is in other countries. Families crowdfund and spend their life savings travelling all over the world.”
“It is now 12 weeks since my sister Margaret died of a glioblastoma brain tumour. May I thank you, Madam Deputy Speaker, for attending her funeral? Since her death, I have made it my mission to make sure that glioblastoma has a cure. I would not wish Margaret’s experience on my worst enemy. Through caring for Margaret for 19 months, I have learned a few things. Through Margaret’s treatment and campaigning on this issue, I have met industry experts, trade bodies, Ministers, charities and scientists. It is a topic that I know far more about than I would ever have wished to. And the biggest insight I have gained is this: the treatment of brain tumours in the NHS has not improved in 30 years.”
“I thank the hon. Gentleman for his offer of help. I would love to accept that offer and any help he can give in finding a cure for glioblastoma. I appreciate the problems he must have in Peterborough, and I am sure many London councils are placing homeless families there. To put the situation in context, the reason for that happening is that there are currently 104,510 homeless families, in London including 131,370 homeless children. One in 50 Londoners is homeless, and one in 23 children in London is homeless—that is one in every class. The pressure for all London councils is how to meet their legal responsibilities and find homes for people on a temporary basis, and his town is feeling the impact of that.”
“As one of the largest contributors to international aid in Pakistan, Britain has a role to consider how that investment is used. It took me a long time to get to the bottom of the fact that FCDO money was being used to produce books in schools that discriminated against Ahmadis. Will the Minister address the nature of investment in international development in Pakistan? How can he ensure that it does nothing that encourages the discrimination that exists from birth to death? The hon. Member for Carshalton and Wallington explained how that affects all levels of civil life and the community. With that, I will sit down.”
“We know about the harassment and discrimination that Ahmadis experience in Pakistan and how that percolates to other countries, including, regrettably, our own. The APPG undertook an in-depth investigation into discrimination in Pakistan. The single most depressing fact that I took from all the evidence sessions was that Ahmadis are discriminated against more strongly by younger people than by older people. Liberalism is in reverse in Pakistan, and the discrimination that the community feels is likely to be of a long-standing nature. That is in part because the Government of Pakistan have withdrawn from the responsibility to educate their young people and given the responsibility to people who hold extreme views on religion.”
“I congratulate the hon. Member for Carshalton and Wallington (Elliot Colburn) on securing this debate, and I thank you, Mr Sharma, for chairing it. I do not wish to take too long because so many people want to contribute, which gives this debate great strength. We can be assured that Governments in Pakistan, both regional and national, will know of it; they will be watching it and it will have an impact. It is great that so many people from nearly all the parties represented in our Parliament have taken the time to be here today. I have the privilege of being chair of the all-party parliamentary group for the Ahmadiyya Muslim community. It is one of the easier tasks as an APPG officer; due to the incredible lobbying of the community, we are always quorate with very little effort.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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%.”
“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.”
“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.”
“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.”
“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.”
“My constituents Mrs L and Mr M, from Hong Kong, came to the UK on a British national overseas passport. They came to see me because they had been paying into a pension for the whole of their careers and sold their home before coming to the UK, but because of their BNO visa status, their bank account was frozen at the direction of the Chinese state, in contradiction to Hong Kong law. They are not alone; the Home Office has issued BNO visas to more than 160,000 Hongkongers who have moved to the UK. Does the Home Secretary think it is right that at the behest of the Chinese communist party, BNO passport holders are being denied access to their own money, from their own bank accounts—”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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 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.”
“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.”
“In the last year, we have had 72 two-bed, 34 three-bed and two four-bed properties to let, with 10,000 families on the waiting list. That tells me that we are not building enough new homes or doing enough to encourage new developments. The dominance of huge building firms, and the decline of small and medium-sized builders, is part of that story. We need to do something different, and we need to do it now.”