Maraviroc and Progressive Multifocal Leukoencephalopathy

Jim Shannon Excerpts

Monday 30th September 2019 Commons Chamber

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

I am glad to be able to discuss an issue that I have been working on closely with my constituent, Ms Amarjit Rai. This is an urgent matter and I believe it is important to put this issue on public record and to seek greater flexibility in NHS policy on the commissioning of the drug Maraviroc to treat Natalizumab-induced progressive multifocal leukoencephalopathy, and in NHS England’s approach to individual funding requests. I thank Amarjit, her advocate, Kartik, her consultants and Mary Jo Bishop and Neha Soni in my office, as well as the House of Commons Library, for their assistance with this debate.

In my work on this case, I have been struck by parallels with the campaigns by the late Dame Tessa Jowell on the more experimental use of drugs for very rare conditions, for which there will never be the sample sizes in one country, or potentially across the world, for a full clinical trial, but for which the anecdotal evidence is positive and the patient voice should be heard. Some of my contribution today will be slightly technical, but I hope it will be clear.

Ms Rai was sadly diagnosed with multiple sclerosis in 2013 aged 34. She was prescribed Natalizumab, but sadly as a consequence she contracted PML, a highly rare and often fatal viral disease that affects only a handful of people across the UK. She has since been rendered disabled with no functional use of her right arm. She has other debilitating effects. PML affects the brain by damaging the nerves. The symptoms include muscle weakness, visual disturbance, impaired speech and cognitive difficulty.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House. Does she agree that the treatment of this often fatal viral infection of the brain must be focused on survival rates and that, given that survival rates are better with Maraviroc, it must be available where clinically determined? If it is key to making lives better and halting this disease, we must do everything we can to make it available.

[Seema Malhotra]

The hon. Gentleman makes a point that I will come on to about how the decisions need to be made on the medical evidence and with the voice of the consultants being clearly heard by those making the decisions.

There is no cure for this condition, but two years ago my consultant’s neurologist advised that Maraviroc had had a positive effect on patients suffering from PML in relation to her condition, immune reconstitution inflammatory syndrome in multiple sclerosis. An individual funding request was submitted by my constituent’s consultant, national expert Professor Ciccarelli at the National Hospital for Neurology and Neurosurgery. The application was refused and a subsequent appeal was also unsuccessful—this process went on through 2017 and 2018—seemingly on the same basis as was given to me in writing in October by NHS England, which was that the

“use of Maraviroc for this condition is currently seen as experimental as the current evidence is limited to very small observational studies. NHS England has concluded that there is not sufficient evidence to support the routine commissioning of this treatment for the indications listed.”

The effect on Amarjit was heartbreaking. I met Amarjit and her friend and advocate Kartik. She had a wheelchair and a walking stick, and even the most basic activities were a struggle. She had decided to fund the drug privately from her savings. Maraviroc had remarkable results for her—importantly, that was also the opinion of her consultants—without any side effects. Other treatments that the NHS had sought to prescribe, such as MRIs and monthly steroids, were not just neutral but net negative. Amarjit and Kartik explained the impact that Maraviroc had had on Amarjit’s health and quality of life. I was just staggered when she told me:

“I can talk. I can walk. I can go to the bathroom on my own”—

things that we take for granted. Clinically, the PML lesion appeared inactive and there was a reduction in the inflammation around her brain.

The drug costs around £480 a month, but by the end of June this year Ms Rai could no longer afford to pay for it herself, so she has since been without it. Although her health has been stable so far, such is the condition that it could dramatically change at any time.

Aside from the issue of funding, I have been surprised over the past year by inconsistencies in NHS policy and advice. We all believe in an NHS that is free at the point of need. This is a situation where the patient, leading neurologists and all involved in her care agree that she should have the drug. In November 2018, consultant neurologist Dr Michael Gross, who was also supporting Amarjit’s care as an expert advocate, wrote to Kartik:

“Thank you for confirming further information about Amarjit Rai... Professors Johnson and Ciccarelli agree that this is the appropriate treatment for Amarjit. Long term steroids have already generated severe osteoporosis in 2016 and are not her choice.

You will have already proved in what is an N=1 trial that her treatment would appear to be effective. There will almost certainly never be the size of trials in this rare disorder that would allow a definitive statement by a funding organisation.

I think we have to ask who is making the decision, given that there are now three senior consultants confirming this is the right decision… Quite frankly I am appalled by the lack of humanity that is being demonstrated here.”

In November 2018 I wrote again to the Minister. I received a response from Lord O’Shaughnessy in the other place, who helpfully said the following:

“Maraviroc is not licenced for the treatment of symptoms of PML. There are clinical situations when the use of unlicensed medicines or use of medicines outside the terms of the licence, known as off-label, may be judged by the prescriber to be in the best interest of the patient on the basis of available evidence. The responsibility for that falls on healthcare professionals.”

Sadly, this made no difference.

Following the lack of progress, I wrote again to the Secretary of State in March 2019. I quoted the helpful response that I had received from Lord O’Shaughnessy. The Health Minister in the other place, Baroness Blackwood, responded in May and referred again to the individual funding request process. She stated that the IFR can be considered only if the patient can be demonstrated to be clinically exceptional. She said that

“an IFR can only be considered if the patient can be demonstrated to be clinically exceptional compared to the wider group of patients and is likely to derive greater benefit from the treatment.”

At face value, all of this would appear to be true for my constituent, but the use of Maraviroc is an area where policy appears to be in some confusion.

In response to a parliamentary question I asked in July about the assessment that NHS England has made of the availability of Maraviroc to patients with PML, a third Health Minister, the hon. Member for South Ribble (Seema Kennedy), wrote:

“We are informed by NHS England and NHS Improvement that it does not commission Maraviroc for progressive multifocal leukoencephalopathy… NHS England and NHS Improvement have published a do not commission policy for ‘Natalizumab-induced progressive multifocal leukoencephalopathy in relation to immune reconstitution inflammatory syndrome in multiple sclerosis.’”

That response seems to contradict earlier responses and advice. First, “does not routinely commission” is different from “does not commission”. Secondly, it made no reference to the IFR process, which two Ministers had previously mentioned.

I tabled a further parliamentary question last week to ask what assessment the Secretary of State had made of the effectiveness of Maraviroc in patients with PML. A fourth Health Minister, the Under-Secretary of State for Health and Social Care, the hon. Member for Mid Bedfordshire (Ms Dorries), responded to my question. The response I received today was mind-boggling:

“Maraviroc is currently authorised for the treatment of patients who are infected with HIV type 1. The Medicines and Healthcare Products Regulatory Agency which is responsible for the regulation of medicines in the UK is not aware of any application for use in patients with PML and therefore cannot comment on the efficacy of this drug in patients with PML.”

It might be helpful if I highlight for the Minister findings from wider medical journals that the House of Commons Library has helped me to compile. In December 2016, the American Academy of Neurology published an article entitled “Severe early natalizumab-associated PML in MS: Effective control of PML-IRIS with maraviroc”. A summary of a case involving a 55-year-old Caucasian HIV-negative man diagnosed with relapsing, remitting MS in 2013 shows that that led to a subsequent diagnosis of PML. Clinically, the patient deteriorated rapidly, according to the article. Oral Maraviroc was initiated six days after his admission. Eight days after Maraviroc initiation, MRI follow-up revealed stable PML lesion size. Over the following weeks, the patient improved continuously. After 25 weeks of Maraviroc treatment, the John Cunningham virus DNA was no longer detectable. Maraviroc was continued and well tolerated at a stable dose. The patient survived both PML and IRIS.

A subsequent article was published by the American Academy of Neurology entitled “Maraviroc as possible treatment for PML-IRIS in natalizumab-treated patients with MS” in December 2016. It cited a 34-year-old man treated with Natalizumab for three years without previous immuno-suppression. After a period of time, the patient was admitted with seizures, headaches, and impaired memory, and an MRI scan subsequently confirmed PML. Twelve months after diagnosis with PML and six months after the start of Mariviroc, PML-IRIS lesions were resolved, and no new MS disease activity was detectable.

An article in 2017 by Steiner and Benninger published by the American Academy of Neurology built the medical explanation for why Maraviroc had been effective in cases of PML in MS sufferers. In summary, the condition for which the cause is believed to be the John Cunningham virus, which infects the central nervous system in patients with low immune conditions, became more prevalent and was observed in around 5% of patients with HIV prior to the availability of highly active antiretroviral therapy, or HAART. The article goes on to describe how the era of

“monoclonal antibodies for immune-mediated conditions such as Natalizumab for MS and Crohn disease heralded another context for PML. As of November 2016, there have been 698 reported cases of PML under natalizumab.”

The research goes on, and it is true that some research such as that published in The Journal of the Neurological Sciences in July 2017 confirms that it does not work in all circumstances, and steroids may be more effective in some patients. However, an article in Neurology Times in January 2018 states that in PML treatment options are limited. Maraviroc has been used successfully in some PML patients to avoid IRIS, although not all patients respond to Maraviroc. It recommends further research and testing in identifying patients at risk of IRIS and tailoring treatments accordingly.

In that context, let me make reference to the urgent clinical commissioning policy statement on Natalizumab-induced PML, which was published by NHS England in March 2018. It said:

“It has been assessed that the development of a full policy is not needed at this time as there is currently little evidence into its effectiveness for this indication”.

I do not believe that that policy statement takes account of all the research available or indeed that which has appeared subsequent to its publication. The research is more nuanced, the medical benefits for my constituent are undeniably clear, and the denial of funding is inexplicable to her and renowned experts in the country.

Maraviroc, or Celsentri, as defined by the European Medicines Agency—formerly in London, it is now based elsewhere in the European Union—is a medicine that is routinely prescribed for HIV. Although it does not cure HIV infection or AIDS, it may hold off the damage to the immune system and the development of other infections and diseases.

Medical research has identified that the JCV most associated with HIV patients with low immunity has found another context in patients with PML. My constituent’s condition is incredibly rare, affecting, potentially, 10 or fewer people in the country. Given that very few options are available, she is not the only patient for whom, in anecdotal studies, the drug Maraviroc has shown remarkable results. With no other options available, my very ill constituent has been paying £500 a month privately for the past year to fund Maraviroc herself, but she can no longer afford to do so. Amarjit’s consultant neurologist and other specialists support her receiving the treatment. There is an irony in the fact that more is potentially being spent by the NHS in a month on treatment and tests that do not benefit her as much, and have damaging side-effects. The IFR system in the NHS should be able to review and respond to that situation on the basis of medical need, and I cannot see how that has been done in this case.

Will the Minister tell me how her Department liaises with and challenges NHS England on cases such as this, and how well-researched the Department’s responses to me have been? Will she tell me with what medical advice the treatment has been refused, although three of the leading experts in the country support it in this rare case, and whether their advice can be shared with my constituent and her consultant, Professor Ciccarelli? Will she also agree to a meeting with me, my constituent and her consultant, and a senior member from NHS England to discuss the IFR process?

This is a matter of £500 a month, and of demonstrable medical benefits to my constituent. I should be grateful for the Minister’s response, and her advice on how we can move forward.

--- Later in debate ---

[Jo Churchill]

I thank the hon. Lady, but I return to the fact that it is a judgment for clinicians to make; it is not one for me to make at the Dispatch Box.

My colleague Baroness Blackwood rightly said this summer that we need a national conversation on rare diseases to identify the big areas on which we need to focus so that we can offer the best possible care for rare disease patients and their families, who are often affected by what their loved ones are going through. I could not agree more so, starting this autumn, we will be engaging with patients, researchers and clinicians to gather evidence and identify the major challenges faced in this field.

[Jim Shannon]

I am pleased to see the Minister in her place. I offer her congratulations; it is well deserved.

Will money be set aside at the end of the consultation to address the medicines that are needed for those rare diseases? If money is not set aside, it will not go anywhere.

[Jo Churchill]

I am not in a position to say. Although each cohort is small, the overall rare disease community is large. That is why such debates make an important contribution to the broader conversation. I am grateful for how they raise awareness of the rare disease community, which comprises some 3.5 million people in this country.

Health Infrastructure Plan

Jim Shannon Excerpts

Monday 30th September 2019 Commons Chamber

[Edward Argar]

I am happy to tell the hon. Gentleman that the announcements we are making today are for new money.

[Jim Shannon (Strangford) (DUP)]

I welcome this statement on the commitment to the selected six hospitals in this year and 34 others over a period. I had occasion on Friday past to visit the Royal Victoria Hospital in Belfast, which is well aware of the squeeze on staffing, resources and equipment, with theatres lying vacant because there are not the people to be there. The Government have to understand that hospitals in every area need investment, and the NHS needs to be sustained with block funding. Under the Barnett formula, how much will hospitals in Northern Ireland benefit from this money?

[Edward Argar]

I am grateful to the hon. Gentleman. As I said to the hon. Members for Ogmore (Chris Elmore) and for Linlithgow and East Falkirk (Martyn Day), I am happy to write detailing the process, and I am happy to include the hon. Gentleman and his hon. and right hon. Friends in that.

Hernia Mesh in Men

Jim Shannon Excerpts

Thursday 5th September 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered hernia mesh in men.

I have brought this issue to the House because, to be truthful, I was not aware of this problem among men. I am well aware of the hernia mesh issue for women, and have represented their viewpoint for a number of years in this House and back home, where the Northern Ireland health service has responsibility. I asked for this debate after a number of gentlemen came to see me some months ago—I will give a little background on that in a few minutes.

I thank the Backbench Business Committee for selecting this topic for debate. Back in July I accepted its offer of this first Thursday back, even though I know it is the graveyard shift, unless there is a three-line Whip in the main Chamber. Given today’s one-line Whip, many Members have returned home after everything that has happened in the last two days. None the less, I am very pleased to bring this matter to Westminster Hall. I am also pleased to see the Minister in her place. This will be a hat-trick of debates for her—one yesterday and two today. I look forward to her response.

I raised this issue after a meeting I had with some men in Northern Ireland. My party colleague and health spokesperson in the Northern Ireland Assembly, Paula Bradley, who represents North Belfast, initially made me aware of the issue. My hon. Friend the Member for Upper Bann (David Simpson) also brought it to my attention, as he had met constituents to discuss the matter. It is only over the past nine months that I have been aware of it. The men I met that day were aged between 30 and about 55. I understand that in Northern Ireland some 400 men have had problems, and the number across Great Britain will be even higher. They outlined their experiences and the difficulties that they attributed to hernia mesh. I thought that their problems should be considered in this place, as those problems have been replicated throughout the United Kingdom.

The matter has been brought to the attention of the Department of Health and Social Care. The hon. Member for Linlithgow and East Falkirk (Martyn Day), the Scots nats spokesperson, is aware of the issue and will offer his experience. I will not steal his speech, but I understand he will tell us a wee bit about what he has experienced personally and about the health service in Scotland. I am also pleased to see the shadow spokesperson, the hon. Member for Washington and Sunderland West (Mrs Hodgson), in her place.

I urge that serious consideration be given to an investigation, on the same scale as the Australian investigation, and that action be taken after the findings are collated. Australia took action, and I hope the Minister will assure me that the Government will do the same. I promised my constituents and those 400 men across Northern Ireland who have had problems with hernia mesh that I would raise awareness in this House because, unfortunately, we do not have a functioning Northern Ireland Assembly so cannot raise the issue there.

In November 2018, the Health Issues Centre undertook social research to investigate adverse health experiences among Australian men and women who had undergone a medical device implant. The research was product non-specific, to identify any devices that demonstrated a pattern of failure. Many hernia operations are successful. In our job as elective representatives, people do not tell us how good things are; they tell us their complaints. Therefore, we do not always hear about the successful hernia mesh implants, but we certainly hear about the problems.

The issue was highlighted on the “Victoria Derbyshire” programme on 26 December 2018. A spokesperson from the Royal College of Surgeons said that hernia mesh complications “affect more than 100,000” people. They went on to say:

“It is clearly tragic if even a single patient suffers horrible complications from any type of surgery, not just hernia operations. Unfortunately the nature of surgery in general, not just mesh surgery, carries with it an inherent risk of complications which surgeons will always seek to assess, and will discuss with patients according to their individual clinical circumstances before surgery takes place.

It is important to make a distinction between groin hernia, the most commonly carried out repair and other forms of abdominal wall repair where a hernia has arisen, for example, in an incision or scar after a previous operation. These are more difficult and the complications rates are much higher.

A recent 2018 study found that both mesh and non-mesh hernia repairs were effective for patients and are not associated with different rates of chronic pain. The Victoria Derbyshire programme is right to point out how a minority of hernia mesh operations are associated with complications. However, it is also important to stress that such complications range dramatically from minor and correctable irritations to the more serious complications highlighted in its programme. Complications can also occur with non-mesh hernia repairs, and by not operating on a hernia at all. It is extremely important that patients are given the full picture by surgeons, regulators, and the media.”

A large number of studies have looked at the available treatments, but unfortunately we do not have all the appropriate information. The spokesperson continued:

“There have already been a number of scientific studies looking at the use of different types of mesh in hernia and we should continue to review the evidence and patients’ experiences to make sure the right advice is given and the right action is taken. Along with the regulatory authorities, we will continue to listen to patients’ experiences. Patients suffering complications or pain need help, not silence.”

That is very important and we must underline that point. They continued:

“There must also be an ongoing review of the data to make sure that previous studies have not missed any serious, widespread issue. It remains vital that surgeons continue to make patients aware of all the possible side effects associated with performing a hernia repair.”

Those gentlemen who came to see me earlier this year to ld me that they were not aware of the complications. I will give an example a little later. I do not want to criticise surgeons because they are under incredible pressure, but people have told me that they were not aware of the ins and outs and relevant information, so I believe there is a case to answer.

The Health Issues Centre inquiry specifically focused on people who had suffered a hernia, to better understand the nature and the impact of adverse outcomes. Over a period of four weeks, 183 respondents reported hernia mesh-related injury across a range of brands and of categories of hernia. Several serious problems with hernia mesh implants arose, too. It is hard sometimes to explain the physical, emotional and mental effect. The people I met were very clear that in the vast numbers of cases that they knew of, there were several serious problems. The vast majority of respondents—87% of them—did not feel that they were given enough information before their treatment to give informed consent. Indeed, they were never told about the risks and the impacts. They were not aware of any problems.

A senior member of the Conservative party—I will not mention his name—told me yesterday, “I have had a hernia mesh implant, but mine was successful.” Many are successful, but we should highlight those that are not. Some 91% of respondents suffer ongoing post-operative chronic pain as well as other health impacts. For example, some of the men who spoke to me have had serious bouts of depression and allergic reactions. Only 8.7% of respondents said that they had had successful treatment to address the problematic outcome of the operation.

Past cases of mine have involved women who have had mesh operations, which are intimate operations. I have had cases of ladies who have been unable to work or keep relationships going. They have been unable to cope with life, so the impacts of hernia mesh when it goes wrong are very real.

Men represented some 70% of the respondents to the survey. Those figures are from Australia, of course, but I just want to illustrate the matter. I will move on to the United Kingdom, but those figures are relevant.

Years ago in Northern Ireland a man developed a limp four years after surgery. People told him, “We have experienced pain as a result of similar surgery.” Damien Murtagh, who lives in Banbridge and has given me permission to tell his story, has been left with a limp as a result of his operation six years ago. He said:

“For years no one could tell me what is causing this pain. I can no longer ride my bike, go fishing, I work part-time”,

because of the chronic pain and the effect it has had on his lifestyle. He continued:

“The pain in the lower stomach and groin area makes me feel physically sick. I have no private life.”

It has been difficult for him to maintain relationships with other people. The issues caused off the back of the surgery are genuine and life changing.

I find it odd that this surgery can create such problems. I am not a medical professional. I can make no judgment about the operations, but I can ask whether they should continue without the assurance that every possible investigation has been carried out into the prolonged side effects. The patients should know, at every stage, the potential implications if the operation does not go as planned.

Figures specific to the United Kingdom also outline the problem. In a survey of 653 people, 18.8% said that they had developed antibiotic-resistant infections as a result of mesh complications. A person’s general health can go down dramatically. Some 40% of respondents described their pain levels at worst to be 10 out of 10. Usually, 10 out of 10 means someone is doing well, but in this case it means they are not and that they are in severe pain. In addition, 85.6% of respondents said that they could not sleep because of the pain. The men told me that their sleep patterns had been destroyed. They are in constant, nagging pain that never leaves them. When it gets to that stage and someone’s personal life is so affected, we have to look very seriously at the issue.

The problems of lack of information are not specific to Australia. Some 91.7% of respondents were not even told that they would be getting a mesh implant. Some did not even know what was happening. They went for the operation and knew there would be a repair job; they accepted that, but they were not aware of the implications. Some 96.2% said they were not shown the mesh implant that they were about to be given, while 91.7% were not told that the mesh implant was made of plastic, and 98% said they were not told the size of the mesh implant. When it comes to serious operations—in most cases it is probably a minor operation, but it has the potential to change lives—we need to make sure that patients are aware of such things.

Patients feel that they are not being told the risks of the surgery and the potential issues. We understand that that is partly because a decision is made when the patient is open and the need dictates the method; sometimes a decision has to be taken when the operation is at an advanced stage and it might not be possible to let the person know. I understand the pressures that surgeons and their staff are under, but I feel that an essential part of the care is an understanding of what to expect, and that can make a difference to the outcome. It would certainly have made a difference to the 400 men in Northern Ireland who have experienced problems. It would certainly have changed their lives if they had known about the implications for them. None the less, we find ourselves in a very difficult position, and they find themselves physically, mentally and emotionally changed. For some of them, their relationships have broken down as well.

Informed consent is fundamental to any surgery. I had three minor operations in 2017 and, to be honest, I would have signed any paper just to get the operations over because the pain was so extreme. At the end of the day, you sign the paper and you understand. In my case, it was a straightforward operation on the three occasions.

I mentioned Damien from Banbridge earlier. Outlining his case could help people make the all-important decision to go ahead with surgery, knowing that there could possibly be some serious downsides, although not in every case. That would be a more ideal situation for the patients, rather than being struck with post-operation issues without having been aware of the risks. At least they would know that they had taken the risk, not the surgeon, who they might feel had hidden the risk from them. It is a natural reaction. It is not pointing the finger or judgmental. I stress again that in no way can I ever accuse surgical teams of deliberately withholding information from their patients.

In an ideal world, post-operative problems would not exist and the NHS and private hospitals, which some patients are transferred to, would be able to shape the surgery in such a way that the pain that many patients cite would not occur. Problems created by surgery have knock-on effects. Physical problems quickly become mental problems. If Members had heard the stories of the gentlemen I met, they would understand where the mental problems come from. The pain is absolutely unbearable. Many experience depression as a result of surgery. They all cite anxiety, panic attacks and nightmares, and—this is serious—some people hear things that are not there. It clearly affects them mentally.

I congratulate and thank the men for making their information and backgrounds known. I also thank my colleagues from my own party who took the time to let me know about their individual cases. When we hear their stories, we clearly see how their lives have been changed.

In the United Kingdom study, 27.6% of respondents had been formally diagnosed with a mental health condition such as PTSD, which can affect people in many different ways, and 4.7% said that they had self-harmed because of mesh complications. That is probably off the back of the depression and the pain that becomes almost unbearable. I never realised just how much pain can affect people. I met a lady who had a problem following an operation—it was nothing to do with hernia mesh. The pain was so bad that she asked for her right knee to be taken off to remove the pain. Doing that removed the pain, because that is where the pain was, but it was a dramatic step to take, so when people start to self-harm, as some have said they have, because of the mesh complications, we must take serious cognizance of what has happened.

Some 24.3% of respondents had psychotherapy or counselling as a result of mesh complications. Again, the counselling was to try to stop them self-harming, and to help them to deal with a physical, surgical problem that would be long-term. Almost half of respondents—43.6%—revealed that they had suicidal thoughts, which underlines their clear anxiety and the importance of doing something; and 4.7% had tried to take their own lives. Unfortunately, nearly every day of the week we elected representatives deal, in our offices, with people suffering depression and anxiety, whatever the reasons may be. We understand what drives people to the brink of despair. It can be money issues, marital problems, family issues or a physical problem, as in the case we are considering. The figures reveal the dark reality of post-operation life for many of the respondents, and reinforce the urgency of the issue, which needs to be addressed as soon as possible. That is why I have brought the matter to the House for consideration, and it is why the Backbench Business Committee was pleased to provide an opportunity to highlight it. Many complications surround the issue of hernia mesh surgery, and there is a need to give urgent attention to solving them. The figures more than reinforce that point.

I mentioned the effect on families. The gentlemen who came to see me and my colleague, Paula Bradley MLA, on the occasion I spoke of, were able to tell me something about that. More often than not, when someone is sick or ill or having problems they are not the only one travelling that road; their wife or partner and family travel it with them, so there are also family issues. Post-operation care is prevalent among the issues, and 33.1% of respondents in the UK survey said that their partner was now their carer. When we get married we know it is for better or for worse—and sometimes a partner becomes a carer. Clearly that is a great responsibility for them. Three per cent. of respondents said that they had to put their parents into a retirement home as a result of mesh complications and problems with the surgery. People would obviously have loyalty and feel a duty to try to look after them, so that tells me, and should tell everyone present in the Chamber, that clearly the problem affects all the family. If one suffers, all suffer.

I have been told that there are clear problems associated with mesh implants that need to be addressed. We are dealing with issues, following the surgery, that people believe are related to it. They include adverse mental health issues and the fact that 78.4% of people experience depression—more than three quarters of the people in question. For the people I met, depression was clearly now a part of life. Some had stopped work altogether. Family relationships had broken down; they were no longer able to hold them together. Some 40.7% of respondents said that their child acted as a temporary carer. I know the good things that many children do for parents and perhaps siblings, but whenever a child, growing up, who should be enjoying childhood and focusing on their education, must be a temporary carer, there are clearly issues to address. Some men cannot have children after surgery, as some of the men I met told me. That is another issue that means we need to hasten an investigation.

There is also a need to address the issue of post-operative pain that lasts many years. I understand that what I have said is perhaps topical and anecdotal. The hon. Member for Linlithgow and East Falkirk will tell the House about some of the cases, but it is clear to me from meeting the men I have mentioned, and from the evidence that I have seen, that some hernia mesh operations in men have led to serious physical problems. That is why I have brought the matter forward today for consideration. It is the reason for this debate in Westminster Hall today.

We need a governmental investigation, and there must be a directive to do that, and funding to enable it to happen. That is why I look to the Minister. I hope that we will get a helpful response. I hope that in the future all the post-operation issues with hernia mesh surgery can be resolved. I hope that the NHS will receive appropriate funding to tackle mental health issues caused by the surgery. I am very pleased that in the Chancellor’s statement yesterday he reaffirmed the commitment to spending on health—I think it was £34 billion. Is the Minister in a position to suggest that some of that money could be focused on enabling the investigation to happen, and getting the data to try to address the issue? The mental health issues can never be ignored, any more than the physical ones. Perhaps the NHS will be able to improve the surgery process so that patients will not have to cope with being left in serious pain for years and perhaps for ever afterwards.

Now that the issue has been raised it is important that it gets the attention that it deserves and that the problems are tackled. I again ask the Minister—and she knows I do so respectfully and sincerely—whether we can start the process of answering the questions and providing empirical data on the side effects of hernia mesh in the United Kingdom. I know that her responsibility is to the mainland, but the inquiry will have to start somewhere, and I hope that it starts here.

[David Hanson (in the Chair)]

The hon. Member for Strangford (Jim Shannon) has summarised the case very succinctly. We move seamlessly to Front-Bench responses. I call Mr Martyn Day.

--- Later in debate ---

[Jim Shannon]

To follow on from the shadow spokesperson’s question, has it been possible within the investigation and review to understand why the vast majority of people can have the operation without any side effects, while a large number of people do? There were 400 such people in Northern Ireland. If we take that population across the whole country, that means about 24,000 people across the rest of the United Kingdom, so the figures show a large number of people who have had problems. Is it possible to say why, or to investigate and ascertain why those problems take place, as they did in Australia?

[Ms Dorries]

We will take that question away. I will come back to the hon. Gentleman, because that is a detailed question with more complexity in it than I could answer today. For those people who suffer from pain, is it alleviated by the steroid and local anaesthetic injection? Are those numbers just people who present back once with pain, or do they go on to have chronic long-term pain, and, as the hon. Member for Washington and Sunderland West says, come back three or four years later? Some drilling down into that data is needed.

Work is under way both within and independent of Government to improve safety and how we listen to patients, in order to gather the information to work with. In July, we launched the patient safety strategy, which sets out the direction of travel for future patient safety. It was developed through speaking to not just staff and senior leaders but, importantly, patients from across the country. As much as it looks at system improvements, such as digital developments and new technologies, it also looks at culture, so that the NHS becomes ever more an organisation with a just culture of openness to concerns, whether they are raised by patients, family members or staff. Concerns of all kinds should be welcomed, valued and acted on appropriately.

We are also waiting to hear back from the independent medicines and medical devices safety review, which is led by Baroness Cumberlege. The review examines how the healthcare system has responded to concerns raised by patients and families around three medical interventions, one of which is vaginal mesh. To do so, the review has focused on meetings with a broad range of stakeholder groups; I think the hon. Member for Washington and Sunderland West may have attended one of those with her mother.

I close by acknowledging just how difficult the subject matter is. No one should suffer from chronic long-term pain without every effort being made to reduce it and find out why it occurs in the first place. This is not an easy subject for men who are suffering from ongoing pain to speak about. We know that men are always very reluctant to come forward and go to the doctors about anything. I pay tribute to the many impassioned contributions of the brave men who have allowed their stories to be told, who have visited their MPs and contributed, because men are not good at sharing information when it comes to their health.

As I mentioned earlier, however, it is vital that the use of mesh to treat hernias continues. It remains the best course of action for patients where the appropriate treatment pathway leads to surgery. As with all treatment, shared decision making should be central to this process. It is vital that we continually examine the evidence together on the best means of treatment. Decisions in healthcare are often about weighing potential benefits against risks, and I thank those in our healthcare system who strive always to offer us the best treatment possible.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

Thank you very much, Mr Hanson. I will certainly take no longer than three minutes. I had that advantage earlier on—I may have taken advantage of it, but there we are. Three minutes is more than enough.

First, I thank the hon. Member for Linlithgow and East Falkirk for his contribution. If we wanted a headline for the hon. Gentleman, it would be “More mesh than man” because of the number of operations he has had, if he does not mind me saying so.

[Martyn Day]

I have said it.

[Jim Shannon]

It was the hon. Gentleman’s quotation, so I am just quoting him again. He has personal knowledge of what has taken place. Again, to be fair, his operation has been successful. The shadow spokesperson, the hon. Member for Washington and Sunderland West, brought a lot of information to the debate. The problems are really real.

We set out two subjects in this debate: No. 1 was awareness, which is important, but No. 2 was that everyone should understand, before they have the operation, what the implications could be. That does not mean that they will not go ahead with the operation, but it ensures that they understand it. The hon. Lady referred to the “devastating” effect that this can have on lives. It is not a quick or cheap procedure, either, and patient safety is critical.

I thank the Minister for her response. She first confirmed in her contribution that we are raising awareness, and secondly referred to a safety review. I appreciate that and understand why. That does not in any way dismiss—no one can dismiss—those problems that have arisen out of the hernia mesh operations in men as not real. I ask her, if she has the opportunity, to perhaps look at the Australian investigation, although maybe she has already done so.

[Ms Dorries]

indicated assent.

[Jim Shannon]

There we are; the Minister is ahead of me there. Well done. That investigation might give us some ideas for what we could do here as well.

I also thank the hon. Member for Burton (Andrew Griffiths), as always when he turns up, for his contribution. I know many people who have had the operation successfully, but my job here is to bring to the attention of the Minister and this House the many others who live with the mental, physical and emotional problems. That is what this debate is about. I thank everyone for their contributions, and I thank you, Mr Hanson, for chairing the meeting admirably, as you always do.

Question put and agreed to.

Resolved,

That this House has considered hernia mesh in men.

Artificial Intelligence in Healthcare

Jim Shannon Excerpts

Thursday 5th September 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I apologise to the Minister and all hon. Members for not being here on time. I was in the main Chamber, as I had a business question that I wanted to ask the Leader of the House. I apologise for my late arrival. I hope that everyone will be happy with me speaking, having arrived more than 10 minutes late.

It is a pleasure to speak on this matter. I thank the hon. Member for Crawley (Henry Smith) for bringing forward an issue on which he and I are much in tandem in thought, deed and speech, as so often; today is another one of those occasions. It is also nice to see the Minister in her place. I promise not to ask any questions that will throw her off guard, as I did yesterday. That was not intentional, by the way; I just wanted to add to the debate. I hope to get a response on that question at some time in the future. No doubt, if we have the opportunity to have debates in Westminster Hall, the Minister will be in a position to answer many of my questions. I also thank the hon. Members for Cambridge (Daniel Zeichner) and for North East Derbyshire (Lee Rowley), as well as those who will follow me, for their contributions.

Mr Paisley, you know that I am not au fait with computer technology. I honestly cannot use a computer. My children can, and my grandchildren can, but this auld boy cannot. It is one of those things. When someone relies on the staff in their office to do all the computer work, perhaps they do not have to. It is only in the last few years that my colleague and hon. Friend the Member for Belfast East (Gavin Robinson), in this very Chamber, taught me how to text; I learned to text just over two years ago. So I have advanced greatly in my aspirations, although I suspect that others will say that if that is all I have done, I have not done very much!

I am not all that au fait with computers, but the presence of modern technology in science and medicine has saved billions of lives and can only be lauded, especially when it is matched with the brilliance of the human mind and human hands—the skill of the surgeon, the knowledge of the doctor and the care of the nurses. All those things coming together are a very important combination. Putting patients at the heart of artificial intelligence is what we are discussing.

The background information on the debate we received pointed out in its news section various articles in the media where the NHS and all those with health problems can see the benefits of artificial intelligence and healthcare. As the hon. Member for Cambridge mentioned, it can be used to tackle staff shortages. We can also use it to address and help those with kidney problems. That is an issue very close to my heart: my nephew had a kidney transplant, so the issue of kidney problems is real for me and my family.

Other articles note that artificial intelligence could “restore the care” in healthcare, that scientists claim to have developed the world’s first AI vaccine, and that smart tech can help people with dementia. How real that issue is in my constituency. Over this last period of time, I have noticed that many more people with issues with dementia and Alzheimer’s are coming forward to make me aware of their problems. It is a terrible disease to watch, as it greatly changes lives.

The role of technology is ongoing and vital to a vibrant NHS, but we can never be in the position whereby it overtakes a doctor who can act on experience hand in hand with their medical knowledge. We need to have both the human element and the artificial intelligence aspect working together as we move forward.

I welcomed the Government’s announcement of 8 August 2019, in which they outlined some £250 million of investment to help establish a national AI laboratory, which would sit within NHSX. That money is incredible. They also purposefully set aside money within that; the Office for Life Sciences has established five centres of excellence in digital pathology and radiology with artificial intelligence, supported by an initial £50 million industrial strategy challenge fund investment and a further £50 million to scale up funding from the Department of Health and Social Care.

The centres are working with NHS and industry partners. We cannot do anything if we do not have partnerships, one of which I will give as an example later on. Those partners include innovative small and medium-sized enterprises, and they are working to develop pioneering artificial intelligence-enabled pathology and radiology tools. We need the NHS and partnerships with universities and business to ensure that we can move forward and that we can all benefit.

I read an interesting article that highlighted the fact that medical imaging—where AI can be trained on thousands of scans—has led the charge. This is marvellous technology; clinical trials have proven that it is as good as leading doctors at spotting lung cancer, skin cancer, and more than 50 eye conditions from scans.

If we can advance medical expertise and knowledge, let us do that and encourage it. It has the potential to allow doctors to focus on the most urgent cases and rule out those who do not need treatment immediately, or identify where a minor treatment would do. Other tools have been developed that can predict ovarian cancer survival rates and help to choose which treatment could and should be given.

Diagnosis is, of course, important. Artificial intelligence has the potential to transform the delivery of healthcare in the NHS, from streamlining workflow processes to improving the accuracy of diagnosis and personalising treatment, as well as helping staff to work more efficiently and effectively. With modern AI, a mix of human and artificial intelligences can be developed across discipline boundaries to generate a greater collective intelligence.

I laid an early-day motion this week—I am not sure whether hon. Members have had a chance to look at it; I would encourage them to sign it. Mr Paisley, hailing from Northern Ireland, as I do, will understand its importance. It is about Queen’s University in Belfast, which is doing some fantastic work addressing cancer issues. The EDM says:

“That this House congratulates all of those involved at Queens University, Belfast for its breakthrough early research findings on discovering a biomarker panel for ovarian cancer that may be able to detect epithelial ovarian cancer two years earlier than existing testing methods; thanks those who work so tirelessly to bring about such a difference to lives of people throughout the globe; and expresses pride in one of the foremost medical research universities in the world.”

Queen’s University is doing tremendous work, as are other universities. A number of my friends over the years have had ovarian cancer—I am sure others here will have also had that experience. Unfortunately, the diagnosis of ovarian cancer is often, “Go home and get your affairs in order.” There is a limited time to live. That work will hopefully predict ovarian cancer two years in advance of what we are able to do now, and is a fantastic, tremendous breakthrough. We welcome it. It shows that partnerships between the health service, universities and big business can make things happen.

As I said, I want to ensure that there is hands-on, human co-operation with AI methods of diagnosis, and another concern I have is safeguarding information. It is important that we protect people in the process. There are people who pride themselves on hacking information from Government services, just for the joy of knowing they have outsmarted them. There are also those who do it to garner information for nefarious use. We had a breach of information in this place that led to my staff’s home details being leaked, which we took very seriously. How much more serious would that be for vulnerable, ill people?

Any investment in AI within the NHS can go hand in hand only with top-level data protection and cyber-security, especially when we bear in mind that in May 2017—it will be real to many of us in the House, and indeed to almost everyone in Westminster Hall—the NHS was hit by a large-scale cyber-attack that disrupted hospital and GP appointments. It was high level, very disruptive and clearly down to someone intentionally disrupting what took place. It is a tight rope that we walk, and I believe that it can be walked. I ask the Minister to assure us that security is a priority in any use and sharing of patient data that is essential to the use of artificial intelligence in the NHS.

I believe we must move with the times and use all tools at our disposal to diagnose early, which allows more effective treatment, and we also need to ensure that our medically trained professionals are on hand and using the tools, and that they are not being replaced by such tools. In some of the futuristic films that we see—I am not sure whether anyone watches them—the robots take over. Everything happens. That is not a society that I particularly want to see. I want to see us working hand in hand with AI, and I want to see the human input into that. Finally, we need to ensure that all information is safely shared.

We recognise the investment by the Government. Let us not be churlish—the Government have made significant progress on this issue, which I welcome, but I also want to ensure that some of the things that hon. Members and I have brought to the Minister’s attention are responded to. I believe the investment by the Government will be money well spent, if we safeguard each aspect of it.

Department of Health and Social Care: Treasury Funding

Jim Shannon Excerpts

Wednesday 4th September 2019 Commons Chamber

[Robert Halfon (Harlow) (Con)]

It is a huge pleasure to see you, Madam Deputy Speaker, in the Chair this evening, not just because you are my constituency neighbour as the Member for Epping Forest, but because you have worked so hard alongside me to get a vital new hospital health campus in Harlow at the Princess Alexandra Hospital. I am hugely grateful to you for being here today. I am grateful to the Speaker for granting this debate, my fifth, on capital funding for the Health Department, particularly for new hospital projects. I strongly welcome the extra £34 billion that is going into the NHS over the next few years. The Government are rightly making the NHS a priority in their spending plan. In doing so, they are helping to create certainty for our hospitals, future-proofing them for the challenges ahead. However, this day-to-day funding does not account for bigger-scale capital funding projects, such as new hospitals. The Health Service Journal suggests that in the past two years NHS providers have requested about £8.7 billion of capital funding in more than 360 formal bids.

The Prime Minister’s announcement of an £850 million cash boost for 20 new hospital upgrades is a step in the right direction, but we risk a healthcare crisis in this country if we do not act quickly. Many of our hospitals in England were built in the 1960s and 1970s and, while our model of care has modernised, the infrastructure has fallen behind. Many of our NHS hospitals are no longer fit for the 21st century, sadly none more so than the Princess Alexandra Hospital NHS Trust in Harlow.

You will no doubt understand the frustration of our constituents, Madam Deputy Speaker, and those of our neighbours, particularly those who work at the Princess Alexandra, that our Harlow hospital was not included in the hospital upgrade programme announced by the Prime Minister. As well as the numerous letters and conversations with colleagues, I have raised on no fewer than 30 occasions during questions in the Chamber the need for a new hospital health campus to serve west Essex. I mentioned that this is my fifth debate. I have also tabled 11 Commons motions. I am pleased to see a number of right hon. and hon. Members here who have also championed the case for increased hospital funding. Six local MPs, including you, Madam Deputy Speaker, helped significantly in writing to the Health Secretary in May last year, pledging their support for a new hospital and acknowledging its importance to

“the vitality of community and also to the economy of the entire region.”

Our passion and determination for a new health campus is founded in the desperate situation that we find ourselves in.

[Jim Shannon (Strangford) (DUP)]

Will the right hon. Gentleman give way?

[Robert Halfon]

Of course. It is impossible not to give way to the hon. Gentleman—my hon. Friend, I should say.

--- Later in debate ---

[Jim Shannon]

I did seek the right hon. Gentleman’s permission earlier today, before the Adjournment debate, to make an intervention. Does he not agree that it is tremendous to see the Government today, through the Chancellor’s statement, listening to need and allocating additional funding for other things, such as policing, Northern Ireland and education, as well as some £1 billion, I understand, for health and social care? However, we do need a standard increase in the block budget under the Barnett formula for Northern Ireland. I suggest that that needs to be ring-fenced to provide frontline services that are also underfunded and on which there has to be a focus. I fully support his request to the Government, because across the whole of the United Kingdom of Great Britain and Northern Ireland there are pressures on health and social care. It is important that everybody in the United Kingdom of Great Britain and Northern Ireland sees the benefits.

[Robert Halfon]

I thank my hon. Friend. He has attended every debate I have secured on the Princess Alexandra Hospital in Harlow. That shows that there is not just support across Essex and Hertfordshire, but from as far afield as his constituency of Strangford and across Northern Ireland. His question, in essence, is about important funding for devolution and fair funding across the board. I completely agree with him and I thank him again for coming, on this fifth occasion, to support my campaign for a new hospital in Harlow.

We need a new hospital for four substantive reasons. First, and there are no two ways about it, the hospital estate is falling down. It is crumbling around staff, patients and visitors, so much so that it is inhibiting the work of our hardworking NHS staff who brought the hospital out of special measures in 2018. The Health Secretary himself, having visited the hospital at the start of this year, stated in this Chamber that:

“the basement of Harlow hospital is in a worse state of disrepair than the basement of this building.”—[Official Report, 1 July 2019; Vol. 662, c. 941.]

That is saying something, Madam Deputy Speaker.

Given that the Palace of Westminster has been promised a £3 billion restoration, I ask the Minister: when will the Treasury prioritise the crumbling basement of our NHS hospital in Harlow? Whenever I visit Princess Alexandra Hospital—as a patient, visitor, or in my capacity as an MP—I am genuinely astounded by the quality of care and exceptional service that is delivered, as was the Health Secretary on his visit. Following a comprehensive tour, he said:

“I’m incredibly impressed with how much the staff are managing to do in the current facilities.”

My inbox, however, is filled with the anxieties of constituents about the pressure on A&E and the condition of the estate. The doctors, nurses and specialists are working in extremely tight spaces, in an immensely pressurised environment. Staff simply cannot be expected to make service improvements, nor to meet NHS waiting time guidelines. I ask the Minister: how can we expect our NHS staff to deliver the high standards that we demand when they do not have the physical space, bed capacity or modern equipment to carry out their jobs?

In no other working environment would we expect as much in the 21st century. The remarkable hospital staff —everyone from the cleaners, porters, ancillary staff, nurses, doctors and consultants to the management team, led by a very special chief executive, Lance McCarthy —have progressed in leaps and bounds. I am particularly grateful to the chief executive for his decision to keep domestic services in-house, protecting the jobs and livelihoods of many Harlow residents.

In July, I was delighted to welcome Kathy Gibbs into Westminster for the NHS parliamentary awards. She was a finalist for the lifetime achievement award after dedicating her entire career to Princess Alexandra Hospital in Harlow. The neonatal unit has received a number of accolades for its dedicated care and has recently been shortlisted as a finalist to receive the Bliss neonatal excellence team award. Should the Minister wish to see at first hand the brilliant work that is done in the busy maternity ward, I encourage him to catch up with the latest series of W Channel’s documentary following TV personality Emma Willis as she joined our Harlow hospital team to train as a maternity care assistant.

All across the hospital, there is a collective effort to raise standards. The entire catering team at the hospital’s restaurant were celebrating recently, having again been awarded a five-star food hygiene rating from environmental health officers. Despite the challenges that they face, Princess Alexandra NHS staff are making progress beyond expectations. In the light of their hard work and proven capabilities, does the Minister agree that our NHS staff are some of the most deserving of a new hospital and place of work that is fit for purpose? They have shown us what they can do in an outdated, difficult working environment—just imagine what they could achieve if they were given the tools to succeed.

Our population is growing at an extraordinary rate, placing enormous strain on local healthcare resources. Our hospital, and town, was built in the 1950s to serve a population of approximately 90,000. Since then, Harlow has seen considerable change, going from strength to strength. We have a thriving enterprise hub—Kao Park—which is home to a state-of-the-art data centre and international businesses such as Pearson and Raytheon, offering unparalleled employment opportunities to thousands of residents. Thousands of new housing developments are under construction to accommodate our fast-growing population and help first-time buyers to get on the ladder of opportunity.

Yet, with this extraordinary population growth, there is unbearable pressure on staff at the Princess Alexandra. Our hospital is struggling to cope with healthcare demands from around 350,000 people, exacerbated by the closure of nearby A&E units at Chase Farm Hospital and the Queen Elizabeth II Hospital. We have one of the busiest A&E units in the country and this trajectory of growth is only set to continue. Soon, Harlow will become home to Public Health England, and we have the chance to become the public health science capital of the world, offering employment to hundreds of people and bringing in many new residents. The near completion of junction 7A on the M11 will improve accessibility to our town, encouraging investment and prospects for business expansion. Given this faster-than-average population growth, does my hon. Friend the Minister agree that we cannot expect our NHS staff to bear the brunt of such demand without giving them the proper resource—a new health campus—to do so?

It is not only about numbers. The third challenge that Harlow faces has been caused by out-of-area placements into large-scale, commercial-to-residential conversions. Permitted development rights legislation has been a disaster for our town. Many of the families placed in temporary accommodation in Harlow by London councils have additional healthcare needs and come to our hospital for medical support, yet neither our local council nor the Princess Alexandra Hospital are given any extra funding to provide this. We face unique pressures on our health and social care resources in Harlow. Does the Minister not agree that a healthcare campus would help to alleviate these pressures as well as offering space for further expansion?

Fourthly, as a champion of skills and the ladder of opportunity, which I know the Minister in his previous role cared deeply about, we need this health campus to create a hub for learning, skills, training, research and development in Essex. Already, the Princess Alexandra Hospital is winning awards for its high-quality training, mentoring and career progression. Fair Train, a national organisation championing work-based learning, awarded our Harlow hospital the gold rating—the top rating—for its workplace opportunities.

That said, the hospital faces immense challenges with recruiting and maintaining qualified professionals, in part due to the appeal of London hospitals and private practices just 40 minutes away. The new health campus would bring with it exciting opportunities for scientific research collaborations with Public Health England and local enterprises. Apprenticeships and unrivalled training courses with Harlow College would help to upskill our workforce and give Essex residents new opportunities to further their life chances.

The new healthcare campus in Harlow could lead the way in health science education and training. Does the Minister recognise the wider benefits that the new healthcare campus would have in upskilling people of all ages in Essex and Hertfordshire, creating employment and research opportunities and boosting our economic prospects? Will he help to make Harlow the health science capital of the world by granting the capital funding to make that a reality?

As the steady stream of investment into our Harlow hospital shows, the Government are aware of the unique pressures that the Princess Alexandra Hospital faces. At the start of this year, I was privileged to open the Charnley ward, a desperately needed £3.3 million development constructed in just four months. Last December, we received £9.5 million to provide additional bed capacity, and in the autumn there was a £2 million investment to make preparations for the busy winter period ahead. Does the Minister not agree, however, that it is the Conservative way to consider what is best value for money for the taxpayer and that, while short-term cash investment provides much-needed relief, it does not go to the heart of the problem?

Suicide Risk Assessment Tools in the NHS

Jim Shannon Excerpts

Wednesday 4th September 2019 Westminster Hall

[Kevin Hollinrake (Thirsk and Malton) (Con)]

I beg to move,

That this House has considered the use of suicide risk assessment tools in the NHS.

It is a pleasure to serve under your chairmanship, Sir Christopher.

According to a detailed study carried out by Manchester University, in one year alone 636 people who were deemed by clinicians to be at low or no immediate risk of suicide went on to take their lives within the next three months. Of course, 636 is just a fleeting fact, one of myriad statistics about the NHS that we can cite every minute of the day, but every one of those 636 deaths is a tragedy—it is a brother, a friend, a partner, a child. One of those 636 people whose lives were lost in that year was the son of two of my constituents, a young man called Andrew Bellerby.

It may break the heart of any parent in this Chamber to see this photograph of young Andrew in his blazer as he went to school some years earlier. As one who proudly took my own children to their new school only this week, it is shocking to think that at some point one might lose one’s child in such circumstances. On 10 July 2015, many years after the photograph was taken, and in the same year as the study that I just mentioned, Andrew took his own life. The loss of Andrew’s life and the devastating impact that it had on his loved ones was, in all likelihood, totally needless. According to an expert witness who represented the Bellerby family, on a balance of probabilities Andrew would be alive today had the NHS trust that was entrusted with his care looked after him properly.

At this point, I would like to play tribute to Andrew’s family, particularly his father, Richard Bellerby. I understand that Richard’s brother is with us today in the Public Gallery; Richard could not be here himself, but I think that he is watching this debate via a parliamentary link. It was only due to his tireless efforts, his determination and his commitment to make sure that others do not suffer the same fate that we are debating this issue today.

Not only did the Bellerby family have to cope with unimaginable grief and loss, but they then had to fight a two-year battle with the Sheffield Health and Social Care NHS Foundation Trust to establish the truth. The truth, which the trust finally and begrudgingly apologised for, was that there had been a simple but fatal series of errors. Andrew’s state of mind was assessed by untrained nurses using an assessment tool—a checklist, for want of a better word—that was not fit for purpose. As a direct consequence, they made an incorrect diagnosis, without even taking into account his past behaviour.

[Jim Shannon (Strangford) (DUP)]

First of all, I congratulate the hon. Gentleman on bringing this matter forward. In Northern Ireland, the figure for suicide is 20% higher than for the rest of the United Kingdom. Does he agree that it has come to the point that all frontline medical staff, from pharmacists to treatment room nurses, should be trained in appropriate suicide risk assessment, especially taking into consideration the high rate of suicide across the whole of the United Kingdom, and in particular in Northern Ireland?

[Kevin Hollinrake]

The hon. Gentleman is absolutely right. That is one key component of three: training nurses; using a proper, validated tool; and taking into account the past behaviour of the individual and the context of the situation. None of those three things was in place for Andrew. As a consequence, 48 hours after being admitted to hospital in an ambulance, Andrew took his own life.

--- Later in debate ---

[Ms Dorries]

I am delighted to inform the hon. Lady that just this week, NHS England has written to all mental health trusts to make clear that they should be adhering to NICE guidelines on the use of risk assessment tools. My hon. Friend the Member for Thirsk and Malton mentioned a trust that is still using the old method. As a result of this debate, we have ensured that the letter is going out to tell NHS trusts that they should not be using the tools any longer and should be implementing the NHS guidelines.

[Jim Shannon]

I congratulate the Minister on her appointment. When intervening on the hon. Member for Thirsk and Malton (Kevin Hollinrake), I referred to the 20% increase in suicides in Northern Ireland. I did so because it is factually correct, and because in Northern Ireland we have a policy and strategy in place to address those issues. Has the Minister, in her short time in her role, had the opportunity to discuss those matters with, for instance, the Northern Ireland Department of Health?

[Ms Dorries]

I am afraid I must disappoint the hon. Gentleman. This is my third day in, and I have not yet had a chance to discuss Northern Ireland in detail, but as a result of his intervention I will ensure that we do that, and it will be on tomorrow’s agenda.

The letter that NHS England sent out highlights the report from the University of Manchester on “The assessment of clinical risk in mental health services”, and asks trusts to ensure that their risk assessment policies reflect the latest evidence from the university, as well as best practice. I am pleased that NHS England and NHS Improvement have committed to working with trusts to improve risk assessment and safety planning as part of future quality and safety work on crisis care and suicide prevention.

My hon. Friend the Member for Thirsk and Malton asked specifically about the role of the Care Quality Commission in ensuring that trusts are adopting best practice in respect of risk management processes. The CQC has assured me that risk management processes are a key feature of every CQC inspection. I hope that that assurance from the CQC, along with the letter that NHS England sent out this week, will go some way to reassure my hon. Friend.

Kettering General Hospital Urgent Care Hub

Jim Shannon Excerpts

Tuesday 3rd September 2019 Westminster Hall

[Mr Philip Hollobone (Kettering) (Con)]

I beg to move,

That this House has considered the urgent care hub at Kettering General Hospital.

May I say what an unexpected pleasure it is to see you in the Chair, Mr Bone. I am sure that we will all benefit from your wise guidance and counsel. I thank the Speaker for granting me this debate and welcome the Minister to his place. We are joined today by Mr Simon Weldon, the outstanding chief executive of Kettering General Hospital, our very popular local hospital. Of course, you will know him as well as I do, Mr Bone.

Kettering General Hospital is an extremely popular and well-liked local hospital. It is 122 years old this year, and still occupies the site that it first occupied in 1897. There cannot be many hospitals in the country that are still based almost entirely in their original locations from more than a century ago.

Today, we are talking about the urgent need for an urgent care hub on the Kettering General Hospital site. We need the urgent care hub because the hospital is such a popular one that it simply cannot cope with the number of patients admitted to A&E at the moment. Everyone—all the local NHS professionals in every NHS organisation in Northamptonshire—agrees that the best solution to the challenges the hospital faces is £49 million for the development of an urgent care hub on the site, which the hospital needs.

An urgent care hub would basically be a one-stop shop for GP services and out-of-hours-care, an onsite pharmacy, a minor injuries unit, facilities for social services and mental health care, access to community care services for the frail elderly, and a replacement for our A&E department. The most crucial aspect of that is the A&E department, which was built 25 years ago in 1994 to cope with 40,000 attendances each year. Last year, 91,200 patients came through that very same A&E. This year, we are on track to pass the 100,000-mark for patient attendances, which is well over 150% of the department’s capacity. By 2045, 170,000 attendances are expected at the same site

[Jim Shannon (Strangford) (DUP)]

It is not only Kettering General Hospital—A&Es across many constituencies suffer from similar problems. Does the hon. Gentleman agree that we would all benefit if, in A&Es—particularly that of Kettering General Hospital, which the debate is about—there were better patient care and a better working environment for health professionals? In A&Es, it is important that health professionals are happy in their work and feel that they can move forward in what is possibly the most stressful specialty. In the long run, the investment to which the hon. Gentleman referred will pay for itself in better patient outcomes and better staffing capacity.

[Mr Hollobone]

I am most grateful for that unexpected contribution from Northern Ireland—it is always a delight to see the hon. Gentleman in his place, and I thank him for his support. Of course, I agree that A&E facilities across the country are under pressure, but that pressure is particularly acute in Kettering, not least due to the number of houses that are being built locally, the increase in the local population and the fact that—thank goodness—we are all living longer. In Northamptonshire, there has been a particular increase in the number of elderly patients who are served by the local hospital. I thank the hon. Gentleman for attending and for his support.

In 2016, Dr Kevin Reynard of the national NHS emergency care improvement programme visited Kettering’s A&E and concluded that:

“The current emergency department is the most cramped and limiting emergency department I have ever come across in the UK, USA, Australia or India. I cannot see how the team, irrespective of crowding, can deliver a safe, modern emergency medicine service within the current footprint.”

Simon Weldon is also extremely concerned about patient safety. He said to me that unless we get the situation sorted, sooner or later there would be a patient death in Kettering’s A&E.

An impact of the incredibly cramped department is that staff do not have clear lines of sight on some of the most unwell patients to monitor their conditions appropriately. Privacy and dignity for patients cannot be maintained due to overcrowding and cramped spaces. Patients wait longer than the national limits, as there is physically not enough space to treat the numbers coming through the door. Children have to wait in open corridors and go through adult areas to receive treatment. A lack of space to offload ambulances often results in long queues and inhibits ambulance response times to 999 calls. The A&E rooms do not comply with many current health building standards and there is a lack of natural daylight.

The Care Quality Commission and other inspections have consistently raised multiple concerns, for both adult and paediatric patients, about the size and limitations of the estate. Most importantly, as I have described, the number of patients has now reached a critical point and staff need to manage safety daily, patient by patient. For health professionals who take pride in their job, the challenges of working in Kettering A&E are becoming unbearable.

In the next 10 years, local population growth is expected to far exceed the national average and our catchment includes the fastest growing borough outside London, in our neighbouring constituency of Corby. In the last census, out of 348 districts across the country, Kettering was sixth for growth in the number of households and 31st for population increase, while Corby has the country’s highest birth rate. Our local area has been included as part of the Cambridge-Milton Keynes-Oxford corridor, in which there is a commitment to build 35,000 new homes in the next 10 years.

Kettering General Hospital expects a 21% increase in over-80s and 10,000 more A&E attendances in the next five years alone. Despite some temporary modifications over recent years, including moving other patient services off the hospital site to accommodate delivering safe emergency care, detailed surveys show that there now remain no further opportunities to extend the current department and that a new building is required on the site.

Following those safety reviews and surveys, the hospital has developed a business case for a fit-for-purpose emergency care facility that will meet local population growth for the next 30 years. It was developed with all health and social care partners across Northamptonshire, so that patients can get a local urgent care service that meets all government guidance on good practice, ensuring that they get the care they need to keep them safely outside of hospital and that they are cared for by the right clinician at the right time, first time.

The urgent care hub would be a central cog in a whole-system approach to delivering urgent care services to meet the needs of the population, and it would work alongside GP, mental health, community and social care services. The hub continues to be identified as the highest clinical safety priority across the whole of the county by Northamptonshire sustainability and transformation partnership. It was also approved by the NHS Improvement midlands and east regional team as the highest priority submission for central capital funding.

We are talking about £49 million and about Northamptonshire being the only one of all 44 STP areas in the country not to receive any capital funding at all in the past four waves of such funding from the Department. Why is that the case? If the Minister were to agree to the urgent hub proposal, he would put that wrong right. The trust can access only £3.5 million annual capital through its own funding, and the county, Northamptonshire, has only £20 million, but that is used simply to maintain essential equipment and to repair heating and lighting systems. Kettering General Hospital therefore requires central funding or some form of private financing to build the facility.

A bid has been submitted as the highest clinical priority for funding across the whole of the NHS in Northamptonshire, and for NHS Improvement regionally, but Government capital allocation announcements over the past few weeks have not included the urgent care hub, nor any other moneys for Northampton or our local region. I simply do not understand why Kettering General Hospital has been missed off the list. The national NHS Improvement team has indicated that no further STP capital funding will be announced until spring 2020, although I understand that the Government are now reviewing all spending allocations across all Departments in the comprehensive spending review expected later this week. Local people will be very surprised if Kettering General Hospital is not included somewhere in that review.

Given the clear patient safety concerns at Kettering that have been recognised locally, regionally and nationally by NHS experts, what process did the Government follow to award schemes the central NHS capital allocations in recent weeks? Why was Kettering not included? Why were some awards made to areas with no apparent clear and worked-up business case, when Kettering has such a case? Given the lack of access to further NHS capital funding, what are the alternatives for Kettering General Hospital without a central grant of funding from the Department of Health? Furthermore, how are the Government correlating healthcare decisions with the locations of planned growth in housing?

I do my humble best as the local elected representative to express such concerns. The chief executive of the hospital, Simon Weldon, would have made a far better job in this debate than me, but I will quote some of the dedicated healthcare professionals in our local hospital. They will outline the challenges that they face far better than anyone else.

The head of children’s safeguarding at the hospital, Tabby Tantawi-Basra, said:

“Children have to wait in corridors alongside seriously unwell, drunk or mentally unwell adults. This causes a serious safeguarding concern as our staff are not always able to have line of sight on them.”

Sarah Parry, who is a nurse in end-of-life care at the hospital, said:

“When a patient is brought into A&E dying or already passed away, there is no space where relatives can sit quietly to receive the news and grieve. We can’t even make them a cup of tea—they have to share a facility with the staff room!”

Jacquie Barker, the head of adult safeguarding, said:

“We know from the Winterbourne View scandal that the lack of privacy and dignity for vulnerable adults seriously impacts their mental wellbeing. Sadly our facilities mean even our most vulnerable adults are looked after in very cramped conditions, sometimes next to disruptive or aggressive other adult patients.”

Claire Beattie, the head of nursing medicine at the hospital, said:

“Our staff work tirelessly to keep patients safe under the most difficult of conditions. The way the treatment areas are configured means they struggle to easily communicate or ask for help, and if patients are deteriorating then it isn’t always easy to see that quickly and give the urgent help they need.”

Leanne Hackshall, the director of nursing, said:

“Patients are so close together they can almost hold hands. And if someone is being sick or coughing badly in the next space then every other patient worries about who they are so close to.”

Polly Grimmett, the director of strategy, said:

“As Director on call in August, we had over 100 patients in the department for most of the night and it’s only safely meant to fit 40—there were 10 ambulances with patients queuing. This is meant to be our quietest month so who knows how bad it will be in December!”

Nicola Briggs, the director of finance, said:

“If we stopped spending any money at all on necessary things like replacing light bulbs or fixing equipment, then it would still take us nearly 15 years to save up enough money ourselves.”

The urgent care hub is, as far I am concerned, the No. 1 priority for local people in Kettering. The general hospital is much loved, and we need more investment to cope with the growth in the local population and to care for our increasingly aged population. I invite the Minister to visit the hospital and to see the A&E department for himself. If he does so, he will follow in the footsteps of two previous Ministers with responsibility for hospitals and the previous Secretary of State.

The problems are well known in the Department of Health, and I simply do not understand why £49 million—not very much in the context of the size of the whole NHS budget—cannot be allocated to fund the badly needed urgent care hub at Kettering General Hospital. All the local NHS bodies agrees that the hub is the answer to the difficulties and challenges faced by the hospital.

More patients are being treated at Kettering General Hospital than ever before. Their treatment is increasingly world-class, and I thank all the dedicated NHS professionals in our local hospital for their magnificent work. In order to help them face the challenges ahead, we urgently require £49 million from the Government for this badly needed urgent care hub facility.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Jackie Doyle-Price]

The hon. Gentleman, as usual, raises a very important issue indeed. Of course, people with special educational needs will be at risk of mental ill health more than any other cohort of children. I am having regular meetings with the Under-Secretary of State for Education, my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi), who has responsibility for children and families, about this very vulnerable group. Having targeted mental health provision across mainstream schooling generally and put in such investment, we now really need to home in on the groups at highest risk.

[Jim Shannon (Strangford) (DUP)]

Will the Minister outline what discussions have taken place with the devolved Administrations to ensure that best practice and best results are implemented UK-wide, especially considering that Northern Ireland has the highest level of mental health issues pro rata in the whole of the United Kingdom of Great Britain and Northern Ireland?

[Jackie Doyle-Price]

As usual, the hon. Gentleman raises an extremely important point. Of course, health is a devolved matter, but that is not to say that all four nations cannot learn more from best practice in each place. I am pleased to say that we are now increasing our contact with representatives of the devolved Governments, and we will very much be sharing such best practice.

Lower Limb Wound Care

Jim Shannon Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Ann Clwyd (Cynon Valley) (Lab)]

As you know, Madam Deputy Speaker, I do not normally sit when I speak in this place, but half an hour ago I was in a hospital bed on the 12th floor of St Thomas’s when I heard that this debate was coming early, rather than later. There was a big rush to get me here, and there are very good doctors and nurses in the Gallery who helped me to get here, because I thought it was tremendously important to speak. I had secured this debate, for which I am very grateful, and I particularly wanted to talk on this subject. I was pleased to get it before the recess, and I was not going to miss it for anything. After we finish, I shall be returning, I hope, to the 12th floor of St Thomas’s and to very good care.

The subject of this debate was brought to my attention by Lord Hunt, our colleague in the House of Lords, where they had a debate not long ago about what plans the Government have to develop a strategy for improving the standards of wound care in the NHS. As somebody who needs wound care right at this moment, I know what a big subject it is. I did not know before—I was totally ignorant—but I have discovered what a challenging subject it is for so many people.

As a patient myself, I can talk about the subject with some feeling. I have to say that it is the most painful thing I have ever come across, and I had no idea that people suffered this kind of pain. A week ago, when I had to be taken to a local hospital in Merthyr Tydfil, I was asked by an ambulance driver what level of pain I was in, on a scale of one to 10, and I said, “Nine.” I do not usually exaggerate; it was that painful. I am grateful to everybody who has helped me, and I want to make sure that the service develops and people get all the help they need in such circumstances.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Member for Cynon Valley (Ann Clwyd) on securing the debate. She often features in Adjournment debates in this House. We are very pleased to see her in her place, and we thank her for all that she does. Does she agree that many people fear that the NHS neglects leg ulcers and the required treatment is not being given? The latest statistics, according to Dr Adderley’s speech at the Health Service Journal patient safety congress, show that leg ulcers account for 40% of chronic wounds but only 7% of the chronic wounds that are treated. There is quite clearly an anomaly.

[Ann Clwyd]

I am grateful to the hon. Gentleman for making my speech for me. I am sure we will be in total agreement as my speech develops.

Some interesting points were made during the debate in the other place, including the point that wound care is a massive challenge to the NHS, but it currently lacks priority, investment and direction. I want to push the Government, if they need pushing, on the need for urgent action and the development of a strategy across care providers to improve the standard of wound care.

A staggering 2 million patients are treated for wounds every year, at a cost of more than £5 billion and rising. While 60% of all wounds heal within a year, a huge resource has to be committed to managing untreated wounds. The NHS response is very variable. Healing takes far too long; diagnosis is not good enough; and inadequate commissioning of services by clinical commissioning groups compounds the problem, with under-trained staff and a lack of suitable dressings and bandages.

There has also been a very worrying drop in the number of district nurses, whose role in ensuring safe and effective wound care in the community is crucial. I was shocked when I talked to a friend in Cardiff about the problem of putting on surgical stockings, and her experience highlights the need for district nurses. My friend had had a serious operation, and she could not bend to pull on the stockings. I asked her what she did, because she is a widow who lives on her own. She said, “I go out in the street and ask somebody to help me.” I am sure that people are very ready to help, but no one should be in that situation. I think we would all agree that the drop in the number of district nurses is very worrying.

I am told that, ideally, 70% of venous leg ulcerations should heal within 12 to 16 weeks, and 98% in 24 weeks. In reality, however, research shows that healing rates at six months have been reported as low as 9%, with infection rates as high as 58%. Patients suffer, and the cost of not healing wounds swiftly and effectively can lead to more serious health problems, such as sepsis, which is often the result of an infected injury. We also know that foot ulcers on diabetics can unfortunately lead to amputations if they are not dealt with properly.

In the other place they talked about the Bradford study, and there is a very good summary of it in the House of Lords Library. It underlines the importance of evidence-based care, with nearly one third of patients interviewed in the study failing to receive an accurate diagnosis for their wound. As the study puts it:

“Wound care should be seen as a specialist segment of healthcare that requires clinicians with specialist training to diagnose and manage…There is no doubt that better diagnosis and treatment and effective prevention of wound complications would help minimise treatment costs”.

We learn most of all from our own experience. My experience is that when I first developed a farthing-sized spot on my leg, I did not know what it was. I asked my chiropodist, who looked at it a few times and said, “I think you had better go and see your GP.” I went to see my GP—a very good GP—who did not know what it was either. Eventually, I was referred to a skin specialist—this is some weeks ago, now—who looked at it and said, “I don’t know what it is, but why don’t you try putting Vaseline on it?” Now, I do not think the experts up there in the Gallery would think that that was a very good idea, but I did put Vaseline on it and I do not know whether that did me any harm or not. You do worry a lot when something like that happens, whether you have knocked your leg or injured yourself in some other way, and you wonder what on earth it could be.

I think that maybe diagnosis is difficult, but rapid diagnosis is absolutely essential. I am sure the Government would agree that we need to get to grips with a nationally driven strategy. Without it, patients will receive worse care for their injuries and the financial burden on other parts of the NHS will continue to increase, because patients develop chronic wounds or catch an infection that could lead to life-threatening illness.

During the course of my journey, I have met many interesting people. For instance, I did not know there was an all-party group on vascular and venous disease. I just happened to see it in the all-party notices the day after I had been in St Thomas’s. I rang up the chair, the hon. Member for St Ives (Derek Thomas), and asked him if I could come along to a meeting. He said that I was welcome to. I went along and, apart from the chair, I think I was the only MP there. There was a fascinating mixture of people, who were all involved in this problem in some way.

There was somebody who runs a leg clinic, who had a lot of stories to tell. In fact, she sent me a whole pile of patient stories—there is not time to read them out today, but they are very interesting. I realised how difficult it is for patients to get the right diagnosis and the right treatment. I took a list of all the people—they are mainly consultants—and I know that some people in St Thomas’s would have come along if they had known of the existence of such a group. It introduced me to the Lindsay Leg Club Foundation, which is run by Ellie Lindsay OBE, who is the president. There are leg clubs in many towns and cities around the country. She was very encouraging—I say that as somebody who was a bit afraid when they realised what they had. She rang me up several times, and her patient stories were fascinating.

--- Later in debate ---

[Caroline Dinenage]

I do apologise—I went to university in Wales, so I should get that right.

I must congratulate the right hon. Lady, first, on securing the debate, and, secondly, on making such mammoth, gargantuan efforts to be here. She did that with some help from her friends on the 12th floor of St Thomas’s, the experts in the Gallery—I am going to have to be careful what I say. She is nothing short of an inspiration to all of us, both as a long-standing Member of Parliament who is greatly respected in this place and as a human being. We are so grateful for the fact that she has made it here today, and we wish her a very speedy recovery. We look forward to her being back here to monitor every development that the Department can bring about in the context of wound care and how we look after people in hospital more generally. She is a great inspiration to all of us, and I thank her so much for raising this issue in the House.

I think we all recognise the importance of ensuring that patients have access to high-quality lower limb wound care. As a Government, we are absolutely committed to ensuring that people receive the right care in the right place at the right time, whether through acute services, a local GP or services based in the local community. As the right hon. Lady knows, wound care treatment is a vital service which, during the initial period, is predominantly provided by a community nurse. That crucial provision offers relief to those with leg ulcerations or diabetic foot ulcerations and pressure ulcers.

As Members will know, venous disease is the most common type of leg ulceration, and can cause great distress and suffering to patients and their families. The right hon. Lady spoke powerfully of the pain that she has suffered, and that others suffer, as a result of the condition. I think it is important to keep that in mind because of the side effects that having to live with enduring pain for long periods can have on a person’s emotional and mental health and wellbeing.

Our priority is for leg ulcers of this type to be treated early and in the community when that is possible, without the need for further hospital admissions or GP appointments. I think that that preventative approach is right for patients and for the system. It is key for wound care to be delivered effectively and efficiently. Good wound care not only saves patients from distress and suffering, but gives nurses more time to deliver other important services, and alleviates pressure on acute services. That is why NHS England and NHS Improvement have commissioned the Academic Health Science Network to develop and deliver a national wound care strategy programme for England, which aims to improve the quality of wound care provision. It is a comprehensive programme, which covers improving prevention of pressure ulcers, wound care of the lower leg, and management of surgical wounds.

The programme’s work will be informed by the following priorities. First, it will improve patient experience and outcomes by developing national clinical standards of care and a more data-driven approach. I know that the right hon. Lady is very keen on that. Secondly, it will work with industry to ensure that the right wound care products are reaching patients at the right time through the development of a much more robust supply, delivery and distribution model. Thirdly, it will aim to improve the current patchy provision of wound care training—of which I know the right hon. Lady is well aware—and the inconsistencies in the availability and quality of educational resources. As well as improving the care provided by healthcare professionals, that will allow patients to become more capable in self-care.

The right hon. Lady raised several issues that I should like to follow up. Let me first pay tribute to the work done by the Lindsay Leg Club Foundation in relation to community-based leg ulcer care. I am pleased that the committee of the lower limb clinical workstream of the national wound care strategy programme includes members of the foundation. As the right hon. Lady said, leg clubs are organised by the local community rather than health providers, but leg club nursing teams are employed by NHS local provider services, clinical commissioning groups and GPs. That is why it is so important for everyone to work together to support people as much as they can in the community. I can imagine that when this condition starts it is so painful that people can feel extremely alone and isolated, and the provision of leg clubs and other support mechanisms in the community, to offer the information, advice and support that they need, can help them to stop feeling that isolation and fear.

I also join the right hon. Lady in welcoming the all-party parliamentary group on vascular and venous disease. It is important for us to have all-party parliamentary groups which really recognise conditions of this kind, and which are doing their best to push the Government, and us in the Department of Health and Social Care, to do everything we can to support people who suffer from them.

The programme that I was talking about started its work in late 2018, and since then has brought together a range of experts. It has recruited over 500 stakeholders from a very broad range of private and public sector organisations to its stakeholder forum, and it is important that we have people with real experience from across the country taking part in this and influencing the decisionmaking. They aim to deliver their recommendations by the end of the 2019-20 financial year. We look forward to receiving them and the positive impact that they will have on patients’ lives. This is just for England, but NHS England is in communication with wound care leads in the three other devolved nations to ensure that they are sharing this learning across the piece.

The research in this area is also very important. The Department funds research into all aspects of human health through the National Institute for Health Research at the level of about £1 billion a year, and the NIHR has funded a number of studies focusing on lower limb wound care, including venous leg ulcers and vascular problems. A five-year funded programme on complex wounds comprised 11 new and updated reviews of the existing literature, a survey and interviews with people with complex wounds, their carers and health care professionals. There has also been a series of venous leg ulcer studies using randomised control trials to investigate the clinical and cost effectiveness of new versus traditional venous leg ulcer treatments from types of compression bandage through to compression hosiery to larval therapy.

The right hon. Lady also spoke about the importance of having the right staff, expertise and medically trained people to be able to deliver the care, and it is no secret that community nurses are a fundamental part of our health system; they provide vital services that ensure patients are treated where they are most comfortable, which often is in their own home, and that they are supported to manage their conditions and to live independently. To help deliver our vision for community services, we are investing an extra £4.5 billion a year to spend on primary medical and community health services by 2023-24. The key to delivering the long-term plans and vision is ensuring that we have the right nursing numbers, particularly in the community, and that is why the interim NHS people plan is prioritising taking urgent accelerated action to tackle some of the community nursing vacancies. That will be done in a range of different ways, including increasing supply through under- graduate nursing degrees, clearer pathways into the profession through the nursing associate qualification and apprenticeships, and tackling some of the misconceptions about the role of community nurses, which sometimes deter people from entering the profession. In addition, in May 2018 we announced £10 million for incentives to postgraduate students to go on to work in some of the areas that we care very passionately about and where we want to recruit the best people, such as mental health, learning disability and district community nursing roles.

[Jim Shannon]

I am pleased to hear this very positive response from the Minister. In Northern Ireland we have a very good community nursing programme that is delivered through the social care services. It cares for those who need care and a change of dressing for their wounds every day. The Minister referred to contact with the regions and devolved Administrations; will she contact the Northern Ireland Assembly and the permanent secretary of the Department of Health, Richard Pengelly, so they can give some idea of what we do there?

[Caroline Dinenage]

The hon. Gentleman is always full of brilliant ideas and we will only move forward as a nation if we share best practice and the expertise gained from different parts of our country. So I would be very keen to speak to his colleagues at the Northern Ireland Assembly and see if we can gain any learning from that.

Batten Disease

Jim Shannon Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

[Jim Shannon (Strangford) (DUP)]

Less than half of all available rare disease treatments licensed by the European Medicines Agency are reimbursed in the UK for patients to access freely through the NHS, compared with 93% in Germany and 81% in France. With respect, Minister, the parents of those young children with Batten disease have seen those figures as well. They are desperate for the medication for their loved ones, so will she agree to an urgent review of the funding for such treatments for UK citizens?

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.