Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 29th October 2019 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for the response so far. Will she outline what discussions have taken place with independent groups such as Specsavers, which does excellent work providing wider access to NHS-funded tests and hearing aids, with special reference to more rural areas?

[Caroline Dinenage]

The hon. Gentleman is right to raise this. As I said in my first answer, it is important that we can work collaboratively with organisations in the private sector and across the NHS to make sure that patients, wherever they are in the country, in urban or rural areas, can access the right care and support when they need it.

Diabetes: Tailored Prevention Messaging

Jim Shannon Excerpts

Thursday 24th October 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered tailored prevention messaging for diabetes.

It is a pleasure to serve under your chairmanship, Ms Buck. It is good to see a group of MPs here who have made the effort and taken the time to come to a Thursday afternoon debate. I am pleased to see the Minister in her place. As she knows, I am particularly fond of her as a Minister and look forward to her response. I have given her a copy of my speech, so we can perhaps get some helpful answers. I thank her in advance for that. I am also pleased to see the shadow Minister, the hon. Member for Washington and Sunderland West (Mrs Hodgson), who is always here, and other right hon. and hon. Members who regularly come to diabetes debates.

I am particularly glad to see the right hon. Member for Leicester East (Keith Vaz), who chairs the all-party parliamentary group for diabetes, of which I am the vice-chair. We have many things in common. Not only are we both type 2 diabetic—I make that clear at the beginning—but we are faithful fans of Leicester City football club. We have followed it for years, and it is third in the premier league. Tomorrow night, as I understand, it plays Southampton away, where I hope Brendan Rodgers will do the best for us again.

We are here to discuss diabetes. I have been a type 2 diabetic for 12 to 14 years or thereabouts. I was a big fat pudding, to tell the truth—I was 17 stone and getting bigger. I enjoyed my Chinese and my two bottles of Coke five nights a week. I was probably diabetic for at least 12 months before I knew I was. When I look back, I can see the symptoms, but I never knew then what the symptoms were—I was not even sure what a diabetic was. When the doctor told me that I was a diabetic, he said that there were two things to know. They always tell people the good news and the bad news, so I said, “Give us the good news first.” He said, “The good news is that you can sort this out. The bad news is that you’re a diabetic.”

I went on diet control and stayed on it for four years. When I talked to my doctor again, he told me that the disease would get progressively worse. Even after four years of diet control and dropping down to 13 stone—about the weight I am now, although I am a wee bit lighter at the moment, because of not being that well for the last couple of months—I went on to metformin tablets. A few years later, they were no longer working, so he increased the dosage. He also said, as doctors often do, “You might have a wee bit of bother with your blood pressure. You don’t really need a blood pressure tablet, but take one just in case.” I said, “Well, if that’s the way it is, that’s the way it is”, but he said, “By the way, when you take it, you can’t stop it”, so it was not just about blood pressure.

I say all that because diabetes is about more than just sugar level control. It affects the arteries, blood, kidneys, circulation, eyesight and many other parts of the body. If people do not control it and do not look after it, it is a disease that will take them out of this world. That is the fact of diabetes.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate my hon. Friend on securing the debate. He is an assiduous attender; he attends so much that I think the Speaker of the House said on one occasion that he thought my hon. Friend actually slept in the Chamber. He is alluding to his personal circumstances, but I and other hon. Members have raised the issue of juveniles and underage individuals who have an obesity problem that, over time, begins the process of type 2 diabetes. Although we need to tackle the problems in adulthood that he is raising, we also need to tackle them among children.

[Jim Shannon]

My hon. Friend is absolutely right. The figures that he and I have indicate that almost 100,000 people over the age of 17 live with diabetes in Northern Ireland, out of a population of over-17s of 1.6 million. We know it is more than that and that there are a lot of diabetics under 17, so he is right to bring that up. Northern Ireland has more children who are type 1 diabetic in comparison with the population than anywhere else in the United Kingdom.

[David Simpson (Upper Bann) (DUP)]

I congratulate my hon. Friend on securing the debate. He referred to having been a big fat pudding; well, I probably am, but we will not go there. Importantly, we have young children in schools who need insulin, but there is a difficulty with teachers and classroom assistants giving it to them. What more can we do about that? How can we encourage the education people to do it?

[Jim Shannon]

I know the Minister will reply to that, because that is one of the questions that I had hoped to get an answer on.

On the Monday before last, we had a diabetes event in the House. Before I came over, some of my constituents said, “Will you go along to this event about diabetes? It is really important, because some great things are being done in some parts of England and we would like to know about them.” When I got there, the people were most helpful and informed me that Northern Ireland has one of the better type 1 diabetes schemes, which is reaching out to 70% of people. As we often do in Northern Ireland, in this case we have a scheme in place that is almost voluntary. We have an un-functioning Assembly, which is disappointing, but we have a system whereby that scheme is working. Some of the things that we are doing, we are doing quite well.

There are 4.7 million people living with diabetes across the UK, each of whom should be treated as an individual. In Northern Ireland, we have 100,000 people with diabetes in that 17-plus bracket, but obviously it is more than that when it is all added up. Every day across the United Kingdom of Great Britain and Northern Ireland, 700 people are diagnosed with diabetes; that is one person every two minutes.

I had a good friend—he is not in this world any more, but that is not because of diabetes—who was a type 1 diabetic. He ate whatever he wanted and I always said to him, “You cannot eat all those things.” He said, “Oh, I can. All I do is take an extra shot of insulin.” I said, “That’s not how it works!” I do not know how many times I told him that. My three hon. Friends—my hon. Friends the Members for East Londonderry (Mr Campbell), for South Antrim (Paul Girvan) and for Upper Bann (David Simpson)—will know who it is, so I will not mention his name. He was very flippant about the control of his diabetes, but it seemed to work for him. I could never get my head around the idea that an extra shot of insulin seemed to cure the problem.

[Paul Girvan (South Antrim) (DUP)]

I thank my hon. Friend for bringing this important debate to the Chamber. My wife is a type 1 diabetic who is insulin-dependent. She has already—she is a bit younger than me—lost a kidney, because of lack of control, which can cause problems. That needs to be identified: control is vital, and it is important for people to monitor regularly. New technology is available that can actually give readings constantly, as people go. It is important that people start to use the available technology, so they do not have to take more insulin than they need, but can take it only when it is needed.

[Jim Shannon]

Like my hon. Friend, my wife is younger than me. It must be a Northern Ireland DUP MP thing—we look for younger wives to keep us young. I am not sure if that is right or wrong, or if it is politically correct to say that, but my wife is nine years younger than me. She understands the issue of me and diabetes.

Some 10% of people with diabetes have type 1 and 90% have type 2. I will refer to both throughout my speech, and I encourage hon. Members to do the same and to acknowledge the different factors at play with each. We can manage type 2 with medication, provided we control what we eat and what we put in our bodies. Of those living with diabetes, we have the broadest cross-section of society. The condition affects all genders, ages, ethnicities and financial situations. However, too often I see that policy makers and clinicians fall into the trap of treating people with type 1 or type 2 diabetes as homogenous groups that will respond to the same approach and message, but they respond in different ways.

During this debate I want to focus on four things: the primary prevention of type 2 diabetes; the need to offer different messaging to ensure that the support is appropriate for each individual living with diabetes; the necessity of preventing the complications of all forms of diabetes; and innovations in technology—there is marvellous technology —and patient pathways that can improve outcomes for people living both type 1 and type 2 diabetes. I wish that I had known 12 months before I was diagnosed that the way I was living—the lifestyle, the stress—was putting me at risk. We all need a bit of stress; it is good and keeps us sharp, but high stress levels with the wrong eating and living habits is harmful. I do not drink fizzy lemonade any more because it was one of the things pushing me over the edge. That was probably why I lost most of the weight fairly quickly.

Let us talk about prevention. Today more than 12 million people are at increased risk of type 2 diabetes across the UK. More than half of all cases of type 2 diabetes could be prevented or delayed. If I had known a year before my diagnosis, I could have stopped the downward trend in my health, but I did not know, and I wish that I had done. Many in this House offer leadership on type 2 diabetes prevention; the right hon. Member for Leicester East is certainly one of them. England is a world leader on this front, having recently committed to doubling its national diabetes prevention programme.

I was pleased to attend a roundtable discussion last summer, chaired by the hon. Member for Enfield, Southgate (Bambos Charalambous), at which we considered the link between obesity and diabetes and the importance of tailored messaging for the different subsets of the population. During the discussion I met the inimitable Professor Valabhji, the national clinical director for obesity and diabetes at NHS England, whose leadership in this space should be celebrated. I put that on the record because his knowledge and help for those around him, and his research into and development of how we deal with diabetes, are incredible.

For people with type 2 diabetes, there is the additional aspiration of achieving remission. I echo colleagues’ congratulations to the deputy leader of the Labour party, the hon. Member for West Bromwich East (Tom Watson). We watched him almost shrink. One day I stopped him and said, “Tom, is everything all right?” He was losing so much weight, but it was his choice to diet as he did. He is an inspiration for many people because of what he has done, and I commend him for it. The concept of remission can be alienating, however, because it is not possible for every person with type 2 diabetes.

Central to the effectiveness of all types of support for the individual and the wider population is the messaging used, which is what this debate is about. Tailored messaging should be developed for the sub-groups most at risk of type 2 diabetes. For example, those in the most deprived areas of the country are nearly 50% more likely to be obese and have type 2 diabetes than those in the most affluent areas: there is type 2 diabetes in areas where people do not have the same standard of living.

Obesity is responsible for around 85% of someone’s risk of developing type 2 diabetes. Additionally, south Asians are six times more likely to develop type 2 diabetes than Europeans are. It is a well-known cliché that men are not so open or proactive—I can say this is true—about their health needs, and men are 26% more likely than women to develop type 2 diabetes. I am willing to speculate, as one who fell into that category, that that is in part due to messaging not being in a format that reaches men. I did not know what it was, did not know what it meant, did not know what the symptoms were, but it was happening.

We need to focus some of the messaging on the importance of prevention and the risk of type 2 diabetes for men. Will the Minister commit to ensuring that all messaging to support those with type 1 and type 2 diabetes, as well as for type 2 diabetes prevention, is tailored to the relevant sections of our society?

I have to manage my diabetes every day. I take my tablets in the morning and at night. I am careful about what I eat. By and large, I manage it. I check my sugar levels every morning. The doctor tells me to check and I do it every day so that I know where I am. I am a creature of habit; I do it all the time so that I know exactly where I am. Some days it is out of kilter, probably because I transgressed and had a cream bun when I knew it was the wrong thing to have. None the less, we do such things.

On self-management, the average person with diabetes will spend just three hours a year with a healthcare professional. That means that they will spend most of their time managing the condition themselves and will need appropriate education. The right hon. Member for Leicester East chairs the all-party parliamentary group on diabetes. He organised a seminar where we looked at healthcare professionals and how people manage their own condition and therefore need appropriate education. The current delivery of structured education does not reflect the varying needs of each individual living with diabetes. We are all different.

The best efforts of healthcare professionals and those who provide education often focus on perfect self-management or no self-management at all. In reality, the daily struggle of living with a long-term condition means that every marginal improvement should be seen as a true achievement. We have to manage it and encourage ourselves as we move forward. We have to make sure that by moving a step forward we can then move forward again. There has been an admirable drive to increase the uptake of education, but education alone will not help an individual manage the ups and downs of living with the condition. They need the tools and confidence, as well as the education, necessary to manage their condition.

When I speak to people in my constituency who live with diabetes, they often highlight the feeling of isolation. I am sure we can all agree today that there is a need to provide each of those individuals with the support they need to take away the isolation. Being a diabetic can be lonely if someone does not know how to manage it. They might think they are doing the right thing when they are not. Issues have been highlighted to me about the delivery and format of education programmes. Digital solutions and coaching services should be explored. The Minister referred to that in a conversation that we had prior to this debate. I look forward to her response. We always get something positive from her, and we will certainly get something positive today.

Will the Minister commit to ensuring that the delivery, format and content of structured education programmes is improved through the use of digital solutions, and that national guidelines are adapted to accommodate that? Health apps could also be used to refine and augment diabetes training programmes by enabling clinicians to learn from patients about what motivates them and therefore what support to provide.

I want to congratulate the hon. Member for Wolverhampton South West (Eleanor Smith) on her leadership on how health apps can be used to improve care and patient self-management. Many MPs in this House are diabetic or have an interest in diabetes. That is why we are here today. We are either diabetic or interested in the matter and here to make a contribution. I commend and thank right hon. and hon. Members for their commitment.

Will the Minister commit to undertaking an extensive public engagement and education programme, using digital platforms where appropriate, to showcase effective and evidence-based health apps and encourage their wider usage? Support needs to be tailored to individuals’ particular needs, in recognition that no single solution works in self-management for everyone. Everybody’s needs are different. I was the first diabetic in my family. When the doctor diagnosed me as a diabetic he asked me about my mum and dad and my wife’s mum and dad, and whether there was anybody in my family tree with the condition, but there was no one there. Unfortunately, my condition was caused by my diet and my lifestyle, so I created the problem. It was not hereditary, but it is how we deal with such things and tailor our responses that matters.

I have recently been convinced that health coaches—the Minister will comment on this—can play a key role in this space. Coaches can bring a distinct non-clinical skillset that poses questions for patients to help them devise the solutions that work for them, to help build their self-confidence and self-motivation—in stark contrast to the more prescriptive approach taken in clinical settings. Coaching needs to be clearly defined, and the full range of support that coaches can provide to support tailored prevention messaging needs to be identified. I look to the Minister’s response, because I believe it will have some positivity in relation to what we seek and what will happen.

It has been brought to my attention that the health service may ultimately need to decide whether to adopt a population-based approach to support improved outcomes across the entire population, or a more targeted approach aimed at those facing the greatest barriers to effective self-management. Will the Minister ensure that the health system explores the full range of ways in which health coaches can support people living with long-term health conditions, as well as carers and family members, through the development of an NHS definition of health coaching? Does she agree with me—and I hope with others in the House—that the UK has an opportunity to be an exemplar in the use of health coaches? It is an excellent opportunity and I hope that through the Minister we can make those changes.

I want finally to discuss the potential of innovations and technology in addressing issues related to self-management. That is what I do—I self-manage my diabetes. A flexible approach to the provision of structured education is vital to support self-management. Once equipped with the information and skills necessary to self-manage, people must have access to, and choice from, a range of proven technologies to help them manage their condition in everyday life. There has been a big investment in technology recently in the NHS.

We welcome the Government’s commitment to the extra spend on health, which we talk about regularly. All us in the House are particularly appreciative of the Government commitment. People with type 2 diabetes are now provided with glucose monitors; my hon. Friend the Member for South Antrim (Paul Girvan) referred to those in an intervention. However, people are offered little education on how to use them appropriately. There may be something more that we can do about that. It is good to have the technology, and to be taking steps forward, but it is also good for people to understand how to use it appropriately for management.

The level of investment in innovative hardware for people with type 1 diabetes is substantial and should be commended. However, individuals can be left lost if timely support is not available to help them to interpret and utilise those tools as a means of preventing complications. Many people with type 1 diabetes choose not to access the technologies now available to them. Why is that? I do not know the reason, but it is a question we must ask. I believe that it is partly because of a lack of individual awareness. In the case of my diabetes, that would be right. It could, potentially, be linked to a lack of information. If information is not being provided, I should hope that something could be done about that.

Later in the month an event is being held in Parliament, chaired by the right hon. Member for Knowsley (Sir George Howarth). The event, held in partnership with the type 1 diabetes charity JDRF, is to do with the development of a new report on access to technology for people with type 1 diabetes, “Pathway to Choice”. I look forward to reading the report when it is published, and I know the Minister will be keen to read it.

All of us with an interest in diabetes—and that is why Members are here for the debate—will be interested to read it. Can the Minister inform colleagues here today what measure will be introduced to ensure that all people living with either type 1 or type 2 diabetes can access the latest proven technologies that are right for their situation?

[Sir George Howarth (Knowsley) (Lab)]

The hon. Gentleman has highlighted two important themes: self-management and knowing how to go about it properly; and the more recent theme of the potential of technology to achieve good control. He knows I am keen on both. However, does he accept that artificial intelligence can never replace the human element of having someone to talk to, who can give good, accurate information about how to deal with the condition?

[Jim Shannon]

The right hon. Gentleman is absolutely right. Artificial intelligence is beneficial: it can help where it can help. However, it is better for people to have the chance to talk to someone who can instruct them. I think probably we all want to talk to someone face to face, so we can understand the issues better.

An event that I attended here—with the hon. Member for Heywood and Middleton (Liz McInnes), I think—was about diabetes and also bariatric surgery. It may have been in the Thames Pavilion. I mention it because sometimes bariatric surgery may be the only way to reduce weight and enable someone to get to the other side, to address the issue of diabetes. That, as the right hon. Member for Knowsley said in his intervention, is something that people need to talk about. It needs to be discussed so they know what the options are. It is not for everyone, but it is for some people. A number of my constituents over the years have had that surgery and it has always been successful. It has reduced their weight in such a way as to control their diabetes. They are fortunate. Not everyone would have been able to have that surgical operation, but bariatric surgery is important.

To conclude, there is no one solution to diabetes prevention or management. Sometimes, no matter how well informed we are, diabetes can present new and potentially insurmountable challenges. I have some recommendations for the Minister. Primary prevention of type 2 diabetes should take a broad population approach, while ensuring that there is a range of programmes, including digital ones, so that no groups are excluded. There should be someone to speak to—access to someone to converse with who can advise and take things forward. Messaging should be varied and regularly re-evaluated, to ensure that there is engagement from those subsets of the population at the highest risk of type 2 diabetes. We cannot ignore the issue of obesity and diabetes. That was referred to at business questions and will probably be referred to during Health questions on Tuesday.

Finally, a holistic approach should be taken to diabetes care both to ensure value for the individual and to maximise the benefits to the NHS. When we are dealing with the NHS we must look at the money we have to spend, and how to spend it better. Prevention and early diagnosis are among the ways to do that, and the area of type 1 diabetes technology is important. Over the years I have had a number of constituents under the age of 10 who had early-onset type 1 diabetes. I can picture some of their faces, as I speak. They will always have to manage their diabetes. Mine came about through bad diet and bad management, but for some people it is hereditary. I ask the Minister to ensure that the Department for Health and Social Care will continue to focus on the important issue of messaging, in relation to diabetes.

--- Later in debate ---

[Keith Vaz (Leicester East) (Lab)]

It is a pleasure and honour to serve under your chairmanship, Ms Buck—for the first time, I think. I thank the hon. Member for Strangford (Jim Shannon) for securing this debate, not only as vice-chair of the all-party parliamentary group on diabetes, but as a fellow Fox—a supporter of Leicester City Football Club. As we heard from the hon. Member for South Antrim (Paul Girvan), he is also probably one of the most assiduous Members of this House.

I am pleased to see the Minister in her place and congratulate her on her appointment. I hope she will last longer than the last three diabetes Ministers—I am not one of those who wants a general election tomorrow, and we would like to see her build herself into her portfolio. I hope she will last as long as the shadow Minister, who has been there a while and so has been through many Ministers. We hope they will be able to share information. Let us keep the Minister in her place for some time—until the election, of course.

I declare my interest as a type 2 diabetic and chair of the all-party parliamentary group on diabetes. I have a family history: my mother, Merlyn, and my maternal grandmother both had diabetes, which gave me a 4% higher than average chance of getting diabetes. Added to my south Asian heritage, that makes me six times more likely than my European counterparts to be someone who would get type 2.

We have heard some amazing statistics. We should all just sit down, as if we were sitting in the Supreme Court, and say, “We agree with the hon. Member for Strangford,” because we agree with practically everything that he and my hon. Friend the Member for Heywood and Middleton (Liz McInnes) have said. However, it would not, of course, be the nature of Parliament if we all just agreed with the speech of the person before us, so I will plough on; I apologise if I repeat some of the things already mentioned.

As we know, every two minutes someone is diagnosed with diabetes. In my own city of Leicester, a higher than average number of people have diabetes—8.9% compared with 6.4% nationally—and that is expected to rise to 12% of the city’s population by 2025. That is due to the higher proportion of black and minority ethnic residents compared with the UK national average—BAME communities are genetically more likely to get diabetes.

In the time that I have spent as a type 2 diabetic, which is about 10 years, and as the chair of the APPG, I have come to the conclusion that there are five pillars of diabetes care, and I want to talk briefly about each one. The first is putting consumers first: we must put diabetics at the heart of diabetes care. There are meetings, seminars and events—a whole industry around diabetes care. We need new technology, experts and so forth, but we must never forget that it is the consumers—the diabetics—who should be put at the forefront of the debate on diabetes. Sometimes we forget the user: the people at the end of the process.

As we have heard, we need better technology. Members of the APPG and I visited the Abbott site in Witney in July 2019. I was first invited to go there by the former Prime Minister, in whose former constituency Abbott is based, because we wanted to look at the company that produced flash glucose monitoring devices, which have transformed the lives of so many people with type 1 diabetes. We went there because there are shortages of the equipment. In the past, one could go on the website and take one’s own device. There has been a shortage since the Government very kindly decided that everyone with type 1 diabetes would be able to get a machine on World Diabetes Day last year, so we went to talk to the chief executive about it. I know the company is working hard to ensure that the situation is reversed—I suppose we win the lottery by being able to provide the machines, but then we find that we do not have enough machines. I hope that this is going to improve.

I would like to show you my fingers, Ms Buck, so you can see the holes from my twice-daily finger pricking—I am surprised that I have any blood left. I use my GlucoRX device in the morning and am shocked at the reading in the evening, but I just carry on. I would love to have a flash glucose monitoring device—I cannot get it on prescription, because it would probably bankrupt the NHS if all type 2 diabetics received it, but it is a very important device.

My hon. Friend the Member for Heywood and Middleton, who is an assiduous member of the APPG, reminds us of the importance of diabetes specialist nurses such as Debbie Hicks in Enfield and Jill Hill, who have both given evidence to the APPG at one of our meetings. They have an incredible amount of knowledge. To go back to what the hon. Member for South Antrim said, we know that doctors are gods—they have a better reputation than MPs, anyway. Who wants to listen to an MP when they can listen to their local GP? However, they do not have the time. From our constituents, we all know that doctors are unable to see all their patients and spend sufficient time with them talking about diabetes. The point that has been made about diabetes specialist nurses is very important: we need to ensure that we have more of them.

The second pillar of diabetes care, after the need to put consumers first, is awareness. We all know that diabetes is a ticking timebomb. There are 4.6 million people with diabetes in the country, but an additional 1.1 million people, which is equivalent to the entire population of Birmingham—imagine the whole of Birmingham suddenly getting diabetes overnight—are undiagnosed. We therefore need to support awareness campaigns, which have been led very much by the private sector but supported by the Government, because that is the best way to tell whether people have type 2 diabetes and whether they can change their lifestyle.

We have heard from the former Chinese-meal eating, lemonade and fizzy drink-drinking hon. Member for Strangford how he changed his lifestyle. If only he had been told before, he might have changed it earlier. I remember that when my mother had type 2 diabetes, I had just been appointed Minister for Europe by Tony Blair and had no time to look after my mother. I was flying around Europe trying to enlarge the European Union by bringing in Poland and Hungary—as we are about to leave the European Union, I will not start another debate about that. The fact is that I did not spend enough time with my mum, which is a source of great guilt for me personally—finding out about diabetes, how she got it, what she was doing about it, and why she was still eating chocolate when she was a type 1 diabetic. Looking back at it, it seems amazing. It is important that we diagnose earlier, because then we can take our medication.

[Jim Shannon]

The right hon. Gentleman is absolutely right, and I thank him for putting forward his own personal story. The Government have taken some steps in the right direction on the sugar tax. Does he think we should be looking at things such as a soft drinks levy; trying obesity reduction through sugar in schools, in food and in the standards that are put forward; addressing the issue of takeaway food and restaurants, where the level of sugar in meals is incredibly high; introducing a 9 pm watershed for junk food advertising; banning multibuy offers; and providing clearer labelling? Those six things would be a step in the right direction.

[Keith Vaz]

I say yes to the hon. Gentleman on all those points—I agree with them all. I will come to the sugar tax later, but I can take a chunk out of my speech by saying that I agree with all those six points. His shopping list is fine with me, and I will happily copy it.

However, campaigns are extremely important. Very soon, we will have World Diabetes Day. Diabetes UK writes to everyone, asking them to turn buildings in their constituency blue. That is in just 26 days’ time. As chair of the APPG, I have written to mayors across the country, asking them to turn their landmark buildings blue. I ask the Minister to turn the Department of Health and Social Care blue on the outside—it may well be blue on the inside—on World Diabetes Day. I say to the hon. Member for Strangford that he should turn the Castle Ward or the statue of St Patrick blue in his constituency to raise awareness. Of course, one day we will have a statue to the hon. Gentleman himself in Strangford, next to the one of Jamie Vardy, and we will turn them both blue.

We in the all-party parliamentary group, of which we have so many members here—one could call them the usual suspects, but I call them the all-stars—meet every month. We produce reports, one of the most important of which is on mental health and diabetes, something that diabetics are simply not aware of when they get diabetes. I certainly was not aware of it. Support for mental health and wellbeing is critically important to people who have type 2 diabetes. It is an ongoing thing; people do not know why they have depression or why their lifestyle has changed, but it is to do with diabetes. I pay tribute to Diabetes UK, to Chris Askew, and to Nycolle Diniz for the work she does for the APPG.

It is not only specialist nurses who can help us, but other professionals, such as pharmacists. Everyone knows that pharmacies and pharmacists have great expertise in diabetes. My mum—I go back to talking about my mum—could spend more time with her pharmacist in Evington in Leicester talking about her condition than she ever did with her doctor. Maybe the Government should run the awareness campaigns through the pharmacies. That would mean reducing the money going to the doctors a little, and they will quaff around and complain—but if we fund pharmacies to do the testing, we will save so much money in the end. Pharmacists such as our APPG ambassador, Jimmy Desai in Ilford, have done an amazing job. Let us empower them to do things.

The third pillar is prevention, which we have all talked about, and reversal if possible. The hon. Member for Strangford has changed in terms of his weight; we have heard from people such as Dr David Unwin, another of our ambassadors at the all-party parliamentary group, that around 60% of cases of type 2 diabetes can be delayed or prevented by making those lifestyle changes and having a healthy, balanced diet.

At the Health Hub in Doha, which I recommend the Minister visits—although obviously not if there is a crucial vote, as the Government will need her here; I am happy to pair with her and we can go together—if a doctor says, “You are borderline diabetic,” they do not give the patient tablets. Rather, they say, “Here is a prescription to go to the gym downstairs. Start doing your gym work, and don’t see me again until you get your lifestyle sorted out,” because lifestyle makes a great deal of difference. Some of us have our watches connected to our phones—I do not know whether my right hon. Friend the Member for Knowsley (Sir George Howarth) does—so we know about our steps. I very rarely hit 10,000, but at least there is a willingness to try to do more exercise, and walking round the Palace is a way to make sure we do that.

As we have heard, obesity is a killer. Obesity-related conditions cost the NHS—cost the Minister—£6.1 billion a year. I adopt as my own the shopping list of the hon. Member for Strangford: the six things he has asked for, from the watershed to multiple offers in supermarkets. We should all do that and say, “Let’s do it.” The private sector has done its bit. Kellogg’s has put traffic light labelling on most of its cereal packs sold in the United Kingdom since 2018—well done to it!

--- Later in debate ---

[Jim Shannon]

Will the right hon. Gentleman give way?

[Keith Vaz]

I think Ms Buck might object.

[Keith Vaz]

No, she will allow it.

[Jim Shannon]

In my GP surgery, and I think across the whole of Northern Ireland, GPs have classes for diabetics. They bring them in and do all those things: they do their feet, check their blood, check their eyes, talk about their health and check them over physically. They send those tests away, and they are brought back to make sure they are clear. Things are often done in other parts of the United Kingdom of Great Britain and Northern Ireland that could be used as examples here. The right hon. Gentleman is talking about what is happening in Leicester, and it is good to hear that, but we are very fortunate to have that in my clinic and other clinics across Northern Ireland, where we get those checks twice a year.

[Keith Vaz]

Could I have just one minute, Ms Buck, given that the hon. Gentleman intervened?

--- Later in debate ---

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Buck. In my long tenure as shadow Minister for Public Health, it has been a pleasure to speak in many debates with the hon. Member for Strangford (Jim Shannon), on all sorts of health issues. I congratulate him on securing this debate and on his excellent speech. I know that diabetes is an important issue to him and I thank him for speaking so honestly about his own journey with diabetes. In the past, I have spoken about my own journey, but I do not plan to dwell on that too much today.

I thank other hon. Members for their excellent contributions: my hon. Friend the Member for Heywood and Middleton (Liz McInnes), my right hon. Friend the Member for Leicester East (Keith Vaz) and the SNP spokesperson, the hon. Member for Linlithgow and East Falkirk (Martyn Day). Although there are not many of us in attendance, we have heard some excellent contributions and the debate has been full, detailed and excellent. I also thank charities such as Diabetes UK for the work that they do, both to support people with diabetes and to prevent diabetes.

Like the Secretary of State and, I am sure, the Minister, we all believe that prevention is better than cure. We all say that, and I honestly think that we all believe it. As hon. Members have said, however, the Government repeat that mantra but have cut public health funding to the tune of £700 million since 2013. Those cuts have had a serious impact on the nation’s health, but they have hit those in low-income areas the most, as we have heard. That is particularly concerning, given that children and adults living in deprived areas are substantially more likely to be obese, and obesity is a risk factor for diabetes—particularly type 2 diabetes, as my hon. Friend the Member for Heywood and Middleton made clear.

According to NHS Digital, one quarter of people living with type 2 diabetes in England are from the most deprived fifth of society, compared with 15% from the least deprived. We have had that knowledge for a long time, so it really is time that the Government used the knowledge and took action to tackle both the obesity and the diabetes epidemic, both of which disproportionately affect those in the most deprived areas.

Opposition Members have been clear that there is no silver bullet to fix the issue. However, we support the proposal to introduce a 9 pm watershed on the advertising of food that is high in fat, salt and sugar. We also support a restriction on the sale of energy drinks to under-16s and clearer labelling on food and drink—that would help us all. Those are all policies on which the Government have consulted, but we have yet to see anything from the Government setting out whether they will be implemented. Can the Minister update us on the consultations when she responds?

[Jim Shannon]

I congratulate the hon. Lady on her contribution and her comments. I was sitting here thinking about families and diabetes. In a family of four or five, there may be one diabetic member of the household. I believe that the whole family—mum and dad, brothers and sisters; whoever it may be—need to give consideration to the person with diabetes to ensure that their battle with diabetes is one that the whole family fights together. That is difficult to do, but it is important that families realise that they have a job to do.

[Mrs Hodgson]

I am not sure whether there is a hereditary aspect to it, but I am aware that sometimes there can be a number of people with diabetes in the same family. I am the only one I know of in my family with the condition, but then again I do not know my father’s side. My mam always says that I take after my dad with regard to my size, so perhaps there is a link and I am just not aware of it. The eating habits of members of a family can be very similar. If eating habits have led someone to get diabetes, the condition could have affected others in the same family, so the hon. Gentleman makes a valid point.

The evidence shows that the policies proposed by the Government, if they are fully and quickly implemented, could help us to make real progress towards reducing childhood obesity by 2030. Will the Minister tell us what the delay is? Instead of just window-dressing with the childhood obesity plan chapters 1 and 2 and the former chief medical officer’s special report on childhood obesity, which we had in the past couple of weeks, the Government must now take bold action and implement all the policies in the reports. The time for reports and consultations is over. We all know what needs to be done, and now we need urgent action.

According to NHS England, managing the growing incidence of diabetes in England is set to become one of the major clinical challenges of the 21st century, as we have heard expressed clearly in this debate. Estimates suggest that the number of people with diabetes is expected to rise to 4.2 million by 2030, affecting almost 9% of the population, with all the associated costs.

More than half of all cases of type 2 diabetes could be prevented or delayed. The hon. Member for Strangford and my right hon. Friend the Member for Leicester East both spoke about that in detail. By reducing the number of people who are overweight or obese, we can reduce the number of people who develop type 2 diabetes and live with the life-changing complications that are associated with it. Like the hon. Gentleman, I wish I had known much sooner the irreversible damage that I was doing to myself. I have done a detailed blog post about it, which is available online, if anyone is interested in my thoughts—I will go into them no further in this debate. Steps that the Government take today will benefit people greatly tomorrow, so will the Minister please outline the Government’s plans to prevent further incidence of diabetes?

There is no one-size-fits-all approach to diabetes, which is why targeted messaging and support is so important, alongside societal and environmental changes to tackle obesity, as I have mentioned. Interventions such as NHS health checks, weight management programmes and the NHS diabetes prevention programme should therefore be offered and taken up more often in order to identify risk and to prevent diabetes. Many people who are eligible for the NHS health checks are not invited to them or do not attend.

What will the Government do to encourage people to attend their NHS health check and to ensure that everyone who is eligible is definitely invited for a check? About 1 million people live with undiagnosed type 2 diabetes, and one in three people already have diabetes complications by the time they are diagnosed with type 2 diabetes, so that service could be invaluable in preventing further incidence of diabetes and of the complications that sufferers experience.

Those who have diabetes know that it is possible to put type 2 diabetes into remission through substantial weight loss. As the hon. Member for Strangford mentioned, my hon. Friend the Member for West Bromwich East (Tom Watson) has been incredibly vocal about his very visible journey. He has been an inspiration to many. We need to make sure that when people go into diabetes remission, they continue to get support, access to diabetes monitoring and, where necessary, care, because, as I was told, “You are never cured.” Even if someone with diabetes is in remission through diet, they will still forever be a diabetic—we have broken our bodies, basically.

People who wish to go into remission must have continued support. There is still a need for more research to understand the long-term impact of remission on reducing complications, but for now the future in that regard looks positive. This debate has been excellent, and it has demonstrated that there are clearly steps that the Government can and should take to prevent diabetes. I hope that the Minister will take them on board. I look forward to her response.

In closing, I thank and congratulate—on behalf of all us who are living with diabetes—Professor Ian Shanks, the inventor of the blood glucose monitor some 40 years ago. I was so pleased to hear the news overnight that he is to be paid a small award. I say “small” because, although it is £2 million, I understand that most of it will be eaten up by the legal costs of a 13-year battle. He might not be a rich man after he has paid all his legal bills, but he will be rich in terms of gratitude for the millions of lives he has saved, and no doubt improved, with his invention.

--- Later in debate ---

[Jo Churchill]

I truly will. That brings me to the hon. Member for Heywood and Middleton, who wrote to me about the meeting she mentioned. I have written back to say I would really appreciate the chance to meet her to discuss the various challenges. Having already had an obesity roundtable and a Green Paper roundtable, I know there is an awful lot of overlap in these areas. I feel we could work on that. If she will forgive me, I will get back to answering the hon. Member for Strangford.

Over 2018 and 2019, the diabetes prevention programme achieved full national roll-out, making England the first country in the world to achieve full geographic coverage, which is a great achievement. There is strong international evidence demonstrating how behavioural interventions that support people to maintain a healthy weight and be more active can significantly reduce their risk of developing the condition in the first place, which I think the hon. Member for Washington and Sunderland West referred to. The programme identifies those at high risk and refers them on to behaviour change programmes, which, as we know, is very much more likely to lead to positive results than sending someone away and telling them, “Get on with it yourself.”

The NHS long-term plan commits to doubling the capacity of the diabetes prevention programme to up to 200,000 people per year by 2023-24 to address the higher than expected demand and specifically to target inequalities. Furthermore, NHS England and NHS Improvement have enabled digital routes to access the programme, which will support individuals of working age in particular. As the hon. Member for Strangford pointed out, it is important that people can get information where it is most accessible. Those digital routes went live across nearly half the country in August 2019, and full digital coverage is expected in the next year.

The hon. Members for East Londonderry (Mr Campbell) and for Upper Bann (David Simpson) spoke about children. That is where the prevention Green Paper, “Advancing our health: prevention in the 2020s”, targeted support, tailored lifestyle advice and personalised care using new technologies will all have an effect. I take on board the point that there have been a lot of consultations and so on in this area. We received an awful lot of responses to the Green Paper and we are considering them, but I will make announcements shortly, particularly on ending the sale of energy drinks, on promotions and on one or two of the other areas the hon. Member for Strangford mentioned, so watch this space. I have been in position for only 12 weeks, but this whole area is of huge importance to the nation’s health. I hope that, if we can target children and young people through their lifetime, we can stop problems later on.

[Jim Shannon]

I am very encouraged—I think we all are—by the Minister’s response on that point. When she brings recommendations and legislation forward, I think she will find that Members across the House will be very supportive of them. I am greatly encouraged by what she says.

[Jo Churchill]

I thank the hon. Gentleman. I hope Members noticed that yesterday we launched the National Academy for Social Prescribing. I think Members across the House understand that people do not always need a tablet when they go to the doctor. The hon. Gentleman spoke about the importance of mental health support, referral to exercise classes and various other things for people with diabetes. I was lucky enough to go to Charlton Athletic yesterday and see some brilliant things being put into practice in the community, where the messaging was much better received. Twenty-six per cent less men feel able to go and talk to their doctor, so perhaps we can give them the message at their football club, their rugby club or just their workplace. That applies to women too, now they have much busier lives and many more of them work. Targeting people appropriately so we can get messages to them in the right places about how they can look after themselves better has to be the right way to go.

A dedicated Type 2 Diabetes Prevention Week campaign was launched in 2018. The campaign aims to raise awareness among healthcare staff in primary care about the causes, complications and groups at risk of type 2 diabetes, which I think was mentioned, and the services available to manage patient health. Following the success of the last two years, the campaign will be rolled out again in 2020.

The hon. Member for Strangford mentioned the importance of ensuring that messaging to support those with diabetes is tailored to relevant sectors of society. In June 2018, Language Matters was launched to encourage positive interactions with people living with diabetes, to ensure tailored messaging to relevant sectors of society and to expand routes into the prevention programme. It is a little like health checks: people have to know about it, and know how to use it, in order to access it.

In 2017-18, and again in 2018-19, an additional £5 million per year was made available for diabetes specialist nurses. There is a need to beef up support in that area. Diabetes UK, which I have already met—I happen to be lucky enough to have known its chief executive for some time, and it was at the obesity roundtable, as was Cancer Research UK—does a fantastic job in helping to spread that message and to provide information. Another message that has come out is “think pharmacy first” to empower pharmacists. The 11,500 pharmacists on our high streets are a resource that is just waiting to be used, and I hope the new pharmacy contract will be the start of that relationship.

We will do more in the future to support those with type 2 diabetes. There are a range of apps in the NHS app store to further overcome many of the issues people currently face with traditional, face-to-face structured education. NHS England and NHS Improvement are developing online self-management support tools called Healthy Living for people with type 2 diabetes. Many in the Chamber will be familiar with DAFNE and DESMOND—dose adjustment for normal eating, and diabetes education and self-management for ongoing and newly diagnosed—as well as other programmes for those living with diabetes.

Healthy Living will consist of a structured education course with additional content focused on maintaining a healthy lifestyle, including content on weight management, alcohol reduction and cognitive behavioural therapy for diabetes-related distress. Once the course has been developed, NHSE hopes to commence its roll-out from January 2020. It will have universal availability, it will be free to users and local commissioners, and it is intended as an online resource to supplement other quality assured digital coaching programmes that can be commissioned in local health economies. However, it will be in addition to face-to-face support, because everyone has a preferred method of getting information.

As the right hon. Member for Leicester East said, the risk of developing type 2 diabetes is higher in black, Asian and minority ethnic communities. I am pleased to say that NHS England and NHS Improvement are working with the Cultural Intelligence Hub to deliver an insight project to support future communications and improve engagement with those communities. The aim is to support an increase in available places on the NHS diabetes prevention programme and the take-up of those places; to raise awareness of type 2 diabetes, its risk factors and complications, and ways to prevent it; and to promote messages.

NHS England and NHS Improvement have invested £39 million in each year of transformation funding. That funding is key to improving structured education, reducing variation and helping with foot care for diabetic foot disease.

I agree that new technology is key to the management of diabetes. I hope the shortage in the supply of flash monitors will be overcome shortly, but what fantastic news it is that so many people, including many of our colleagues in this place, now have access to those monitors. I know how much difference they can make to people’s lives, and that is only to be welcomed.

I thank the hon. Member for Strangford for highlighting this issue. I look forward to meeting the all-party parliamentary group and working further with it on these messages. I hope I have demonstrated that we are working hard so people can receive the treatment and support they need to live longer but enjoy quality of life.

[Jim Shannon]

I thank the right hon Members for Leicester East (Keith Vaz) and for Knowsley (Sir George Howarth); the hon. Members for Heywood and Middleton (Liz McInnes) and for Linlithgow and East Falkirk (Martyn Day); the shadow Minister, the hon. Member for Washington and Sunderland West (Mrs Hodgson); and my hon. Friends the Members for East Londonderry (Mr Campbell), for Upper Bann (David Simpson) and for South Antrim (Paul Girvan). Most of all, I thank the Minister. We are all greatly encouraged by what she said and look forward to working with her to deliver a good, effective, positive and evidential diabetes strategy that can make lives better. All of us here are committed to that. Let’s do it together.

Question put and agreed to.

Resolved,

That this House has considered tailored prevention messaging for diabetes.

The National Health Service

Jim Shannon Excerpts

Wednesday 23rd October 2019 Commons Chamber

[Eleanor Smith (Wolverhampton South West) (Lab)]

I am pleased to follow the amazing speech from the hon. Member for Telford (Lucy Allan). In the Queen’s Speech, the Government did not mention the long-awaited social care Green Paper or lay down any plans for how they would tackle the social care crisis. Instead, they simply said that they would

“bring forward proposals to reform adult social care in England to ensure dignity in old age”,

failing to mention working-age adults, people with mental illness and carers, who also rely on care. Everyone in this House knows that the current social care system is in crisis. It faces serious challenges as more people need care, but chronic underfunding means that fewer people receive it, and for those who need it, every day is a struggle.

Recently, the Care & Support Alliance conducted a survey of more than 3,000 people with social care needs. It found that one in five respondents went without meals due to lack of care and support; one in four struggled without basic support to do things such as get out of bed in the morning, get dressed or go to the toilet; and more than one in three felt lonely and isolated because of the lack of care and support.

Social care plays an important part in managing hospital admissions for people with mental illness. According to the independent review of the Mental Health Act 1983, around half of all delayed discharges from mental health wards are the result of difficulties in securing appropriate housing and care packages.

[Jim Shannon (Strangford) (DUP)]

I wonder whether the hon. Lady is aware of the figures that I have received. Some 850,000 children and young people have a clinically significant mental health problem; one in 10 children between the ages of five and 16—three in every classroom—has a diagnosable mental health problem; and 75% of mental health trusts do not have enough in their budget to look after them. Does she agree that in his response the Minister should deal with the massive issue of children’s mental health? It needs to be addressed.

[Eleanor Smith]

I do agree with that. The Royal College of Psychiatrists would back up the hon. Gentleman as well.

Organisations such as the Royal College of Psychiatrists have said that the ambition in the long-term plan to reduce the length of stay in adult acute in-patient mental health settings cannot be achieved without improved social care.

It is important to acknowledge the role of carers in supporting people with social care needs. Their own mental health can be at stake due to the pressure, the lack of support and the lack of information. According to a report by Rethink Mental Illness, only one in four carers—23%—feels well informed and respected as a partner in care. A similar proportion, 24%, receive no carer’s assessment, despite it being mandated under the Care Act 2014.

When the social care of patients is not met, not only does their independence suffer; so too does their health, which has a detrimental effect on the NHS. If the NHS is to deliver the ambitions of the long-term plan, a stable and effective social care system is needed. That is why we need to join up services from home to hospital and have a properly integrated NHS and social care service. It is a fact that if the integration of health and social care services did take place, more would be achieved and money would be saved, as the resources would be used jointly. That would ease the access and workforce pressures that continue to present significant challenges across all care sectors.

If the Government really want to tackle this crisis, they must reinstate the levels of access to care that we had before 2010 under the last Labour Administration.

[Neil O’Brien (Harborough) (Con)]

I thank Ministers and everybody at University Hospitals of Leicester for the role they played in securing the fantastic £450 million investment in our local hospitals that was announced the other day. I also thank Ministers for the role they have played in today’s announcement that there will be a new £46 million investment in an urgent care hub at Kettering General. That means that constituents at both ends of my constituency will benefit from huge new investments. I am incredibly grateful.

Those are not the only pieces of good news my constituency has had recently. We have the gleaming new treatment centre at St Luke’s in Market Harborough. We have had the wonderful news that we will be keeping the world-leading children’s heart unit at Glenfield—a service that is not just brilliant for everybody in this country, but through the charity Healing Little Hearts provides help for people across the entire world. We also have the futuristic new A&E at Leicester Royal Infirmary. Those things are all great, but the investment we are about to receive will be even more transformational.

The Secretary of State came to the Royal Infirmary the other day. As we walked around, we heard about both the challenges and the opportunities that we have locally. We saw the difficulty of working in maternity when it is split across two sites. When my son was born just two weeks ago, I saw how having two different sites meant that the staff had to work all day without breaks to fit us in. Their lives and patients’ lives will be much better when we have a single new maternity hospital. As we walked around with the Secretary of State, we saw the brilliance of our intensive care staff, but we also saw that they were working in fundamentally out-of-date facilities. We saw the brilliant work that the A&E team were doing, particularly in enhancing data to improve services, but we also saw the incredible growth in demand for those services.

The investment we are about to get means a new maternity hospital, a new children’s hospital, two super-intensive care units with 100 beds in total and a planned new major treatment centre at Glenfield Hospital, as well as modernised wards, new operating theatres, new imaging facilities and, brilliantly, new additional car parking. Anybody who has ever tried to park at Leicester Royal Infirmary will realise that that is a huge boon. These local improvements are part of a wider series of improvements we are making across the NHS. It is great that we now have a long-term plan for the NHS, with a long-term budget for the NHS that allows NHS managers and staff to plan for the future.

[Jim Shannon]

I very much welcome the Government’s commitment and the money they have set aside, but is the hon. Gentleman aware that 16 million people in England live with the pain of a musculoskeletal condition? How will the Government ensure that people with arthritis are able to access the interventions that need to be in place—from joint replacement operations to physiotherapy—in a timely fashion? I think there is an opportunity to address those issues. I have the same problems in my constituency, but it is a devolved matter. I have been made aware of this issue in England. Does he agree that it is time for that?

[Neil O’Brien]

The hon. Gentleman raises an important point, and I was about to come on to it. It is great that we are making record investment in services such as mental health and spending more than we did before. It is great that we are introducing new targets, such as basic standards for help with eating disorders. It is great that we have more doctors, more nurses and more money. However, we are conscious, as we speak to people in the NHS, that unless we can deal with the sources of demand, fundamentally we will never be able to spend enough on all the priorities, including musculoskeletal services.

What do we need to tackle those causes of demand? We of course need the long-term plan for social care. The Minister needs to stick to his guns on public health: the sugar tax has worked. Things like the campaign against the anti-vaxxers and their pseudo-science are incredibly important, as is action on preventive social care. We should keep going with things such as the migrant health charge, which is raising money for the NHS; we could increase it. We should keep going on technology. It is so important for Ministers to help GPs to upgrade their telephone triage facilities, which would make the experience of using primary care so much better and reduce the burden.

Some of the things in the Queen’s Speech are incredibly important to help deal with these growing burdens. We need new technologies, which is why it is important to get more clinical trials going more quickly. That is why I welcome the measures in the Queen’s Speech. This is about building on the life sciences review—the Bell review—and it is very important to build on the work that the academic health science networks are doing. The potential advantage of our NHS is that it should be one of the best places in the world to do clinical trials—we have the scale—but at the moment there are too many gatekeepers and too many things stopping them.

Last but not least, there is the wonderful improvement in the NHS safety body that we are creating. From personal experience, I can say that when my daughter was born some things went wrong. We had a wonderful junior registrar who did lots of things right, but a few things went wrong, and my wife gave birth without anaesthetic. After that, unfortunately, her placenta did not deliver and the consultant—we never found out who this was—removed the placenta manually with no anaesthetic, and it was incredibly painful for my wife.

It is important, as my hon. Friend the Member for Harwich and North Essex (Sir Bernard Jenkin) said, that we learn lessons in the NHS without attributing blame. Not attributing blame was one of the fundamental recommendations following the Mid Staffs inquiry: we have got to be able to learn lessons. When we started to complain about what happened to my wife, people closed ranks. My wife is a doctor, and we would never in a million years have sued the NHS, but they did not know that. We never even found out who the consultant was who had got things wrong, so I do not know whether the lessons were learned from that mistake; I hope they were.

Having a no-blame culture, having this new body and learning from the experiences of painful things such as the Bawa-Garba case are the ways in which we can have truth and reconciliation, with a system that learns. One of the most important things we could ever do to improve the NHS is to make it a self-improving system that is constantly learning and constantly getting better.

Baby Loss Awareness Week

Jim Shannon Excerpts

Tuesday 8th October 2019 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for Care, the hon. Member for Gosport (Caroline Dinenage), in her absence, for moving the motion. It is always a pleasure to follow the hon. Member for Rotherham (Sarah Champion).

We have heard some marvellous speeches today about personal experiences, and every one of them has been very poignant and has encapsulated what this is all about. I have spoken to previous motions on baby loss, and I am happy to continue doing so in remembrance of those little lives lost.

The fact of the matter is that, since last year, more hearts have been broken, more arms have been left empty and more grief has entered homes throughout the United Kingdom of Great Britain and Northern Ireland. That deserves recognition in the House this year and every year, as the hon. Member for Banbury (Victoria Prentis) said.

This does not take away from anyone else who has contributed to the debate, but I would particularly like to mention the hon. Members for Thirsk and Malton (Kevin Hollinrake), for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince). In our debates in this House they have told us their personal stories and have helped us to understand exactly what it means to lose a child. One thing that came out of those Adjournment debates and those contributions in this House was the need to have a separate room in hospital where people can grieve and have privacy, and the hon. Member for Brigg and Goole (Andrew Percy) talked about the one in his constituency. [Interruption.] I hope Members excuse me; I have a bit of a chest infection and am trying to keep it off if I can.

I mentioned the next thing to the hon. Member for Colchester and he can probably remember it: the importance of having faith involved, as people can use that to help get to the other side of the grieving process. Where there are rooms where people can have privacy, it is important that they can call upon someone of faith to come to give support. The hon. Member for Rotherham spoke about how important it is to have someone to speak to, relate to and understand.

Most miscarriages happen in the first 12 weeks, which is known as “early pregnancy”, and an estimated one in four pregnancies ends in miscarriage—it is one in five if we only count women who realise and report the miscarriage. About 11 in 1,000 pregnancies are ectopic. About one in 100 women in the UK experience recurrent miscarriages—three or more in a row—and more than six in 10 women who have a recurrent miscarriage go on to have a successful pregnancy. The risk of miscarriage greatly reduces in the second trimester—miscarriages then are called “late miscarriage”. My mother miscarried on three occasions, and seven in our family have had this happen; my sister also miscarried on three occasions. The girl who is, in effect, my Parliamentary Private Secretary and writes my speeches in this House—she is a very busy girl, as people would understand, given the contributions that are made—has also had two miscarriages.

[Paul Girvan (South Antrim) (DUP)]

On the number of people who have had difficulties, the problem we have perhaps relates to the level of focus on care, aftercare and counselling. I am not saying this is inevitable and will always be the case, but we do not have the necessary focus on counselling for the individuals and families who have gone through this traumatic experience. Unfortunately the fear of what they have been through sometimes means that they do not want to have another child and go through this again, so they are denied the opportunity to have a family because of what they have experienced; a lack of counselling means that that can sometimes be a fear.

[Jim Shannon]

I thank my hon. Friend for that intervention and I can relate it to my constituency and the people I have spoken to. The thing that sustained my sister, my mother and my PPS was their faith, which is why I come back to the importance of having faith, as I said to the hon. Member for Colchester. In the past year, I have known of two women in my constituency who knew that their baby would not live for more than a couple of hours after the birth yet they carried their baby to its full nine months and enjoyed those few hours together. I am a member of many organisations, one of which is the Royal Black Preceptory. We helped the father of a young child who was lost with a charity event at the bowling club in Ballywater to raise money for this issue, and we raised some £1,000.

I wanted to say all that because it is important, as everyone deals with things in their own way. About one to two in 100 women have a miscarriage in the second trimester. According to one study, once a pregnancy gets past six to seven weeks and there is a heartbeat, the risk of having a miscarriage drops to about 10%. Those are the facts and they are worthy of noting, but they cannot begin to deal with the process of grief that is suffered. It may sound comforting for people to understand that one in four pregnancies ends in a loss and so they are not alone, but, as one lady said, “I don’t want to be the one in four, I want to be the three who live their life as normal and don’t have this emptiness inside.”

It is important to note the facts, but it is more important to acknowledge the grief and the right to grieve. Long gone are the days of, “Just don’t talk about your loss.” We have learned that for those who wish to express themselves it is healing to do so. Some people need to talk about it, but some decide that they may not. Of course many women will never talk of their loss, and that too is part of their process and is to be respected. For others, the symbolism of a balloon release or the lighting of a candle is a way of acknowledging a life that did not blossom but was most definitely there.

We do not understand why many miscarriages take place, but with an NHS under such pressure—I say that really gently, because we have a wonderful NHS that does great work—we do not investigate until the third miscarriage. That in itself is incredibly difficult. I know of one lady whose parents, after encouragement by the midwife after her second miscarriage, paid for private care and for private tests and all the rest, to learn that taking baby aspirin would increase her chance of keeping the next little one. A baby aspirin once a day saw her have a beautiful baby girl. There could well have been another miscarriage had she not been able to seek private advice. When it comes to that example of how that lady dealt with a miscarriage and then had a child, I wonder whether the necessary advice is there in the system and throughout the process. I have said it before and I shall say it again: three miscarriages but no investigation is too much. I sincerely urge change in the NHS procedure. Perhaps the Minister will be able to respond to that point or give me some idea of where we are.

This debate cannot solve the issue of baby loss and grief, but it can validate the fact that a miscarriage was a loss. It happened and should be remembered, and we as a nation should mourn. The fact that a death certificate cannot be issued until 24 weeks must be reviewed. I find that quite incredible. It does not mean that it is not widely understood that someone has suffered through a death. And it is not simply the mother who suffers, but the father and the would-be grandparents, too. The hon. Member for Eddisbury referred to it, and although the hon. Member for Colchester has not spoken today, I remember his previous contributions. The wider family suffer as well. It is like throwing a stone into a pond: the ripples go right to the edge—they touch everyone in the family circle and all the friends. Everyone should remember that.

We must do more to recognise and support those who suffer from a miscarriage. A pamphlet in a cold, sterile procedure room is not enough. I read a little quote that touched my heart. This lady said:

“I carried you for every second of your life—and I will love you for every second of mine…Let sweet Jesus hold you until mummy and daddy can hold you”—[Interruption.]

--- Later in debate ---

[Hon. Members]

Hear, hear!

[Jim Shannon]

I thank the right hon. Lady for that intervention.

Let me read those words again:

“I carried you for every second of your life—and I will love you for every second of mine…Let sweet Jesus hold you until mummy and daddy can hold you—you have just reached heaven before I do.”

[Madam Deputy Speaker (Dame Eleanor Laing)]

I thank the hon. Gentleman for his excellent speech. The whole Chamber agrees with every word that he has just said and appreciates the way in which he said them.

Hypermobility Syndromes: Healthwatch Calderdale’s Report

Jim Shannon Excerpts

Monday 7th October 2019 Commons Chamber

[Craig Whittaker (Calder Valley) (Con)]

Healthwatch in Calderdale, like Healthwatch organisations across England, is the voice of people in its area on health and social care matters. It tells NHS service providers and commissioners about patients’ experience of care and holds them to account, and has a say in how local services are delivered and designed.

As a very rough rule and guide at Healthwatch Calderdale, a trigger to indicate that there is a particular issue in an area of health or social care is when it receives about three complaints on the same issue at the same time. Hon. Members can therefore imagine the concern when Healthwatch Calderdale began to hear of difficult NHS experiences from a large number of adults with hypermobility syndromes, both at events and via its telephone advice service. The level of concern was so great that, for the first time since its inception, a joint piece of work was undertaken between all local Healthwatch areas across Yorkshire and Humber, with Healthwatch Calderdale taking the lead. Approximately 250 adults with hypermobility syndromes took part in the project—all relating stories of difficult NHS care. I will speak more about the findings of the report shortly, but first I want to give the House an outline of what hypermobility syndromes are.

Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement—something that I have not been able to do for many, many years. Joint hypermobility is common in the general population, especially in childhood and adolescence, in females, and in people of Asian and African-Caribbean descent. In many people, joint hypermobility is not problematic at all. It can even be a bonus, especially for sportsmen or sportswomen. However, this debate is neither about athletics, nor is it about party tricks. It is about problematic hypermobility linked to chronic ill health. It is about people who experience symptomatic hypermobility that not only affects the joints, but also causes very challenging symptoms in many other body systems including the digestive system, the nervous system, the skin, the bladder, the cardiovascular system, the teeth and the immune system. It is these people who are described as having a hypermobility syndrome.

The most common of these syndromes is hypermobility spectrum disorder. Other conditions include heritable disorders of connective tissue such as Ehlers-Danlos syndrome, Marfan syndrome, osteogenesis imperfecta and Stickler syndrome. Although these are all conditions in their own rights, they are all complex, chronic conditions that are frequently associated with co-morbidities that require multi-disciplinary healthcare teams to diagnose, treat and manage.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and for bringing this matter to the House for consideration. People suffering from hypermobility syndrome feel that they have to fight to be believed, fight to be seen, fight to be diagnosed and fight to receive treatment—they are tired of simply fighting. Does he agree that the NHS in Calderdale and further afield must do better and must believe and treat these people?

[Craig Whittaker]

The hon. Gentleman is right in a lot of what he says, but the thing about hypermobility syndromes is that they are incredibly complex. As I said earlier, things like the digestive system, the immune system and teeth can all be factors. It is not like when someone goes to hospital with a broken leg, and we know what the problem is. There are multiple complexities around this disorder, so it is difficult from a professional point of view, which I will speak about later, but he is right in much of what he says.

From the Healthwatch work on the subject, it is clear that many people—specifically those with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder—are not receiving the appropriate NHS care, as the hon. Member for Strangford (Jim Shannon) indicated. It is not clear how many people in the United Kingdom are affected by hypermobility syndromes. Hypermobility is often misdiagnosed as fibromyalgia, osteoarthritis, seronegative arthropathy, psychogenic rheumatism, depression or chronic fatigue syndrome. I do not know about you, Madam Deputy Speaker, but after that description, I need to lie down in a darkened room. So imagine how patients with hypermobility-related problems feel when they have to battle alone with immense health problems, often for years before obtaining a diagnosis, only then to face immense difficulties in accessing appropriate NHS healthcare to manage their complex and multi-system disorders and conditions. These patients describe feelings of being let down by the system, as well as huge frustration at both the widespread lack of understanding about their condition from medical professionals and the lack of appropriate care for their condition.

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[Craig Whittaker]

My hon. Friend and neighbour is right. Because there is a lack of understanding about this syndrome and because, not only at GP level but in some specialist areas, areas that do particularly well on this issue are now having to close the list to outsiders because they are becoming over-subscribed. She is absolutely right; that is one of the issues. When I get to the end of my speech, one of my recommendations, which the Minister can hopefully address, is having a regional centre for this condition.

Healthwatch’s report was published in July this year, and it focuses primarily on patient experiences. It presents the overwhelming negative NHS experiences of adults with hypermobility syndromes, and it makes for challenging reading. It is 70-odd pages, and it is not a pleasant read at all. The report took evidence from 252 people via focus groups and a questionnaire. Approximately 86% of the participants had a diagnosis of hypermobile Ehlers-Danlos syndrome, or what would now be termed hypermobility spectrum disorder. A further 13% had other diagnoses linked to hypermobility syndromes. It is precisely those people who are presently excluded from NHS specialised rheumatology services, and it is those people on whom I would like to focus this evening.

The report identifies problems with NHS care in many different areas. It highlights that people are experiencing difficulties obtaining a diagnosis: 76% of respondents indicated that obtaining a diagnosis had been challenging; 22% described the process as difficult; and a staggering 54% stated that it had been very difficult. Frequently, people described the diagnostic process as leaving them feeling depressed, alone and isolated as a consequence of the lack of understanding that appeared to be the norm among professionals. This and the level of disbelief by professionals, as the hon. Member for Strangford pointed out, have led to people doubting themselves, despite their symptoms and, of course, their experiences.

Common terms used to describe how the diagnostic process made people feel included being angry, belittled, desperate, and feeling like a liar or a fraud, and some even said they were feeling as though they were going a little crazy. By contrast, obtaining a diagnosis generated feelings of hope and reassurance, and the feeling that they had been vindicated or were relieved at having an explanation of their difficulties.

On the road to diagnosis, many tests and procedures were commonly performed—sometimes repeatedly, sometimes in isolation and sometimes in conjunction with others. Many people reported that they had had many blood tests, scans and X-rays. A number of respondents spoke of being tested exhaustively over many years. For some people, this extensive testing was a route to an eventual diagnosis and, in some cases, supported interventions, but for others, this resulted in delaying the diagnosis, misdiagnosis and delayed support. A pathway would not only be beneficial to patients, but would also reduce the costs and associated wastage to the NHS of all the unnecessary tests, which are often carried out on a repetitive basis, as they are not giving the anticipated results at the time.

Participants reported that between one and six health professionals were involved in the diagnosis. One significant theme of the responses generally was the failure of medical professionals to link together the variety of symptoms and health issues being reported and a focus on the presenting symptom only. Perhaps unsurprisingly, many participants said that they had received other diagnoses, rather than a diagnosis of hypermobility syndrome. Altogether, a staggering 62 other conditions were named during the process.

The complex and diverse symptoms resulting from hypermobility syndromes have led to many people being misdiagnosed. They were told, for example, that their symptoms were related to mental health issues or mental illness, such as depression, anxiety or stress, and this resulted in subsequent referrals to mental health services, as health professionals could not find a physical cause of the symptoms. People also reported that health professionals had ascribed the symptoms to excess weight, clumsiness or lack of physical exercise. Misdiagnosis, partial diagnosis or stereotyping left people feeling upset and patronised by health officials and led to feelings of anger, frustration, rejection and defeat.

Inadequate knowledge among health professionals was another key theme of the report, and that also emerged from the data. The majority of the respondents referred to health professionals as not aware of, not knowing about or not believing in the wide-ranging symptoms and the health and life impact of hypermobility syndromes on the patients. GPs were specifically mentioned in this regard, and rheumatologists and physiotherapists also received mixed feedback about their knowledge. Some people who had a diagnosis also talked of medical professionals disbelieving the conditions, with some being told, “It’s all in your head,” or assuming that people were just after drugs, rather than genuinely being in pain, despite the diagnosis.

Another key theme that emerges from the data is poor communication between health professionals, both between departments in the same service and between one medical facility and another. Communication between professionals is by no means consistent. Communication failures occur frequently and conversations are repeated at consultation. Again, this experience is described as exhausting and demoralising. A number of participants also reported difficulties in persuading GPs to refer them to consultants. Most people who responded to the survey said that they had either no NHS care or inadequate NHS care. The life impact of these difficult NHS experiences is significant, with people having to give up work, experiencing difficulties in education, having problems with social relationships, the breakdown of families and financial problems, too.

[Jim Shannon]

I thank the hon. Gentleman for giving way again. He outlines the case for people physically, emotionally and mentally, but it is also about the follow-on. If people cannot work, they need benefits and help. If doctors do not understand the intricacies of the health condition, how can they back up constituents’ claims for benefits? Does the hon. Gentleman sometimes become bewildered with the system?

[Craig Whittaker]

It is not I who become bewildered with the system, but the patients who are incredibly frustrated at the whole process. As the hon. Gentleman says, not just with pre-diagnosis but post-diagnosis, there is a lack of professional understanding. Unless someone has a good consultant or GP who understands the system, the things we have talked about—the frustration, pain, stress and anxiety—go on for years. The hon. Gentleman is, again, absolutely right.

Ironically, people feel that they have to manage their own cases entirely without medical support and sometimes without fully understanding it themselves, researching the condition so that they can then ask for what they think they might need. This was often stressful for the respondents, with the stress causing further problems. Some people spoke of having some NHS care, but for some people the only care they received was pain management, often without review. There are several examples of respondents being prescribed opium or strong medications, but they said it was without adequate medical support or review. In the few cases where people reported having good experiences of NHS care—there were some—this appeared to be generally after moving around the country, changing GPs or hospital specialists. This usually occurred over a long period.

It should be noted that not many people commented on social care experiences and this in itself may—there is no evidence—reflect the lack of involvement and awareness of the issues among social care staff. A few people have received some care or support via social care. The most frequently reported were aids and adaptations for the home. Some people have also been given additional support for personal care and social support.

The report details exactly what actions all the local Healthwatch organisations in Yorkshire and the Humber will take to raise the issues with local NHS service providers and commissioners. What is it that those who have experienced this poor level of care are asking for from the Government, NHS England and our strategic health authorities? I have gone through the common asks, but I have come up with five that I and the authors of the report think are probably the most important.

First, we are asking for improved knowledge and awareness of hypermobility syndromes and the related conditions among health professionals across the whole of the NHS. Secondly, we are asking for a dedicated care pathway with faster referrals and a specialist service of some form, such as a specific regional specialist centre. People felt that that would help to address the current fragmented care that many are receiving. Thirdly, we are asking for the ability to access medical support where needed for services such as physiotherapy, without the need for a new referral. Each time a course of physiotherapy is required, people currently have to go back through the process to be referred for it. Fourthly, we would like to see the use of technology, such as video or telephone appointments, to access medical professionals. This would help people to better manage fatigue by removing the requirement to be physically present at the appointment. Finally, we would like improved communication, co-ordination and information sharing between health and social care, either as part of a specialist service, as we have discussed, or simply just as good practice.

Some of those suggestions regarding better care, such as digitalisation and integrated care, fit very well with the NHS long-term plan. It is very clear, however, that other additional actions are required to improve NHS care for this group of patients. It is important to remember that the vast majority of people who responded to the Healthwatch hypermobility syndromes survey are not those who are referred to the specialised rheumatology services, which are commissioned by NHS England. They have hypermobile Ehlers-Danlos syndrome or what is known as hypermobility spectrum disorder. They are specifically excluded from the Ehlers-Danlos national diagnostic service and, at present, have very poor experiences of that NHS care, which, they report, impacts incredibly negatively on their lives.

Thank you, Madam Deputy Speaker, for your time this evening, and I look forward to hearing my hon. Friend the Minister’s response.

Community Pharmacies

Jim Shannon Excerpts

Wednesday 2nd October 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you, Sir David; it is a pleasure to speak in this debate. I congratulate the hon. Member for Halifax (Holly Lynch) on securing the debate and thank her for doing so. Community pharmacies are an important issue in my constituency, as they are in hers, and indeed in the constituencies of everyone who is here to contribute. Elected representatives who keep their ear close to the ground will know that community pharmacies have a critical role to play, why is why I wish to touch on them here.

It is a pleasure to see the Minister in her new post. This is only her second debate in Westminster Hall, and the first in which she is going to have to answer some hard questions, but I have no doubt that she is up to it.

I have spoken numerous times about the importance of community pharmacy funding, especially in rural areas, because it is absolutely essential. For people who are rurally isolated or ill, knowing that their local pharmacy will collect their prescription and have it ready to collect—or even deliver it, as they often do in my constituency—is very important. That point cannot be emphasised enough. It makes all the difference to an ill person and it is critical that we have that system in place.

I agree with the NHS protocol that does not allow GPs to prescribe annually, but I also know the strain that it puts people under to undertake to have a new prescription allocated, collected, left at the pharmacy and then further collected. It is time-consuming and means a lot of effort for those who are ill and rely on public transport. Community pharmacies take much of the legwork and stress out of this.

We all know the problems of getting community transport in rural areas, whether buses, taxis or even getting friends to help with collecting prescriptions. They are as important to our ill and vulnerable people as any other NHS service, and the funding cuts have put too much pressure on that service already.

I assume that all the elected representatives here today have received letters similar to those that I have received outlining the difficulties facing community pharmacies in Northern Ireland. I will highlight those that frighten me the most—I use the word “frighten” because that is exactly what they did. They hail from a rural constituency with stretched service provision. One such letter states:

“The results illustrate the cumulative impact of the funding and the workforce crisis as stark.”—

these are strong words—

“Aside from pharmacy staff leaving by choice, a significant proportion of pharmacy owners, 39%, have been forced to reduce their workforce as they can no longer afford to cover the salary costs. To try to compensate for staff losses, 95% of pharmacy owners have increased their own working hours”.

In other words, they are now working longer hours just to ensure that their pharmacies cope. Some report regularly working 80 to 100 hours a week, which I suggest is above and beyond the call of duty. In addition, the letter states that

“93% of contractors report being forced to reduce the level of additional services they can offer, with 41% reducing or applying to reduce their pharmacy opening hours.”

Those figures illustrate the issues: 30% of staff are leaving by choice; 41% of pharmacies are reducing their staff; and those in charge of the pharmacies are working almost 100 hours a week. Against this demonstrable crisis in workforce, the core workload continues to increase. Dispensing activity over the past nine years has risen by almost 40%—again, pharmacies are doing more work with fewer staff, which compounds the issue—to a level of around 55 million dispensing episodes in 2018-19 alone. That is a colossal number of prescriptions handled and dispensing episodes.

Over the same period dispensing fees have been reduced by around 30%, which is an example of marked underinvestment in an essential service, where safety and accuracy are critical to the public and the health service. I am not saying for one minute that things are going wrong, but we want to ensure that the general public’s safety is always at the forefront. For that to happen, pharmacies need to be assisted financially, and they must have the opportunity to get the staff they need.

The community pharmacy workforce survey contains a number of recommendations for turning things around in the sector. I have no doubt that the Minister’s response will help make these things happen before it is too late. I ask her to be cognisant of the recommendations, because if they are applicable to Northern Ireland, then they are applicable to the UK mainland. The thrust of the recommendations is that there must be better communication. How often do we say that there should be better communication? There must be better communication between Government Departments, elected representatives and their constituents on new legislation coming through. It is critical that we have better communication between the Department and pharmacies, because they need to know what is happening. The Government and the Department need to be responsible to them too.

We have TV campaigns outlining when it is appropriate to seek a pharmacist’s attention, rather than to see a GP. That is all good stuff. People can now visit their pharmacist to ask about minor ailments, taking some of the pressure off A&E departments. That is part of what they are trying to achieve over the next period of time. Yet the information about what can be treated and how to get that help is not communicated. Better communications are a way of doing things just that wee bit better.

Over the years I have suggested to Government Departments, including the Department of Health in Northern Ireland—health is a devolved matter—and to Health Ministers here that we could perhaps do things a lot better. For example, we could let pharmacies take on responsibility for some minor things, such as checking for glaucoma or diabetes. It would be helpful if those things could be checked for in pharmacies.

In conclusion, with this body of trained professionals we have the potential to ease the burden on GPs and enable better surgery efficiency, yet that has not been tapped into. We have the potential to make people’s lives a lot simpler with an appropriately funded community pharmacy. By not doing that, we are losing highly trained professionals and adding more strain to an already overburdened GP system. If we do not help the pharmacies, we do not help the GPs or the A&E departments. This needs an overhaul, and who better to feed into that than those operating the service at present? I look forward to hearing the Minister’s response and, hopefully, some positive replies.

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[Marion Fellows (Motherwell and Wishaw) (SNP)]

It is a pleasure to serve under your chairmanship, Sir David, and I congratulate the hon. Member for Halifax (Holly Lynch) on bringing forward this important debate. I do not want to spend too much time summing up and repeating what has already been said by other Members—I have a list of them here—because I want to leave time for the hon. Member for Washington and Sunderland West (Mrs Hodgson) to make her case and for the Minister to answer the many questions that have been asked—I know she will appreciate that.

As everyone here should know, the NHS operates differently in Scotland. There are many plus points to being a patient and a user of community pharmacies in Scotland, not least of which are free prescriptions for all and the way the Scottish Government value and support local pharmacies. As we are all aware, pharmacists are in a unique position to improve medication safety. They have the time and clinical expertise to make a difference to how patients manage chronic conditions, for which they might be taking multiple medications.

For many patients, it is probably much easier to consult a pharmacist than a GP. The community pharmacy often becomes the de facto community health centre, and most of us know the value of what those centres do. They can be the first point of care, and how many of us here have just popped into the chemist for a bit of advice when we did not feel well, taking some strain off our GPs?

I pay tribute to my local pharmacy, because I could not have managed the last year and a half of my husband’s life without the help and support of its staff. They provided help, advice and reassurance in equal measure and took a real interest in how I was doing. I saw them do exactly the same for other people who visited what is an invaluable point of help.

In Scotland, pharmacists already play an active role in coaching patients on the potential side effects of medication, going out of their way to say why it is important to take medicines exactly as prescribed. Unfortunately, due to this Tory Government’s disastrous handling of Brexit, there is a real possibility that community pharmacies and their customers will be left without an adequate supply of medicines. The Operation Yellowhammer documents gave us a real insight into how that will affect our communities. The threat remains significant and, with just 30 days to go until the Brexit deadline, information about medicine supplies and stockpiling is lacking. Pharmaceutical companies tried to stockpile for the 29 March deadline, but warehousing space is much reduced at this time of year, especially as warehouses fill up with Christmas goods.

Of the 12,300 medicines licensed for use in the UK, around 7,000 come to Britain either from or through the EU. According to the Government’s reasonable worst- case scenario, the flow of goods could be cut by 40% to 60% on day one following a no-deal break, taking a year to recover. As we have already heard, that would play havoc with our local community pharmacies, because they are very much on the frontline. They are where our communities turn when they need help with medication.

[Jim Shannon]

I declare an interest as a type 2 diabetic who is on tablet medication. Over the past few weeks, I have been contacted by type 1 diabetics who depend on insulin. The hon. Lady refers to the need to ensure that medication such as insulin is available after Brexit. I understand from my discussions with the Government that they have assured us that it will be. Does she agree that it is important for the public record that we say that in this Chamber today?

[Marion Fellows]

I thank the hon. Gentleman for his intervention. I am not standing here to cause panic; I have spent a long time not trying to cause panic, but I have been wondering what will happen if the medications that people rely on do not arrive, because that really is a critical concern for lots of people. I know that community pharmacies and pharmaceutical companies are doing their very best to make sure that it does not happen.

Because the NHS in Scotland is different, I have had my eyes opened to a number of things that I did not realise were happening. I had assumed that what happens in my own country would happen in England, but it very much does not; I have had that experience in my dealings with Vertex Pharmaceuticals with respect to cystic fibrosis drugs as well.

I have to say that the SNP Scottish Government really do recognise the importance of community pharmacies and are taking action to ensure that they remain properly resourced. In April, the Scottish Government announced that community pharmacies will receive an extra £2.6 million in funding this financial year. We must compare that with the cuts in spending that this UK Tory Government have made to community pharmacies’ funding over a number of years, with absolutely no provision being made for inflation, as we have heard.

The package announced by the Scottish Government includes confirmation that the Pharmacy First scheme has been integrated with the national Minor Ailment Service, so there is a real drive for people to consult their pharmacist first. People who can register with the Minor Ailment Service, such as those who are over 60 or in full-time education up to the age of 19, can see a pharmacist and be given medication there and then without having to see their GP. The scheme has recently been extended; it now covers not just things such as diarrhoea, but treatment for uncomplicated urinary tract infections and impetigo. All those things reduce the strain on GP services—we know that across the country, with its ageing population, they are under strain.

The increases in funding have been welcomed by the Royal Pharmaceutical Society in Scotland, which states:

“The RPS supports the Scottish government’s vision for more people to use their community pharmacy as a first port of call.”

The Scottish Government have reviewed pharmaceutical care of patients, and they really want to understand how community pharmacies can be better supported. They are putting their money where their mouth is.

I do not always get to stand here and tell an even better story, but in Scotland we care about how our communities can be better treated and have better health outcomes. To my knowledge—I need to verify this—a local pharmacy in Scotland does not charge for delivery to patients because, as the hon. Member for Heywood and Middleton (Liz McInnes) pointed out, people who qualify for a free prescription service are really hammered if they then have to pay for the delivery of their drugs. I ask the Minister to look at that. As hon. Members all know, I frequently stand here and say, “Can you look at how things are done in Scotland and see whether that can be adapted for better use here?” I plead with the Minister to look at that again.

The Scottish Government really do recognise the vital role that community pharmacies play in Scotland, in rural and in urban areas. I will sit down now and leave the hon. Member for Washington and Sunderland West to sum up for the Opposition.

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[Jo Churchill]

On the matter of reimbursement, which was also raised by the hon. Members for York Central and for Westmorland and Lonsdale, we seek to ensure a fairer system of reimbursement for pharmacy contractors and value for money for the NHS. I am sure we would all agree that that is the challenge that we face the whole time. That is why, in July, we launched a consultation on community pharmacy drug reimbursement. We have engaged widely with pharmacy stakeholders and have had an excellent response. We will consider all those responses fully and set out plans for the fairer system in due course. I appreciate that the response will be, “But it’s needed now,” but a pharmacy is a private business, and reimbursement is not pharmacies’ only form of income. What I am talking about will take a shift. There is an acknowledgment that that shift—that transition—will need to be assisted. There is also an independent funding stream from the flu vaccine, for example. I would like to see—and have been discussing with officials—whether a broader vaccine programme could be rolled out through pharmacies as well, and reimbursed. We know we need to do better.

[Jim Shannon]

The Minister has so far given a comprehensive response to our concerns. I suggested in the debate that, when it comes to medical attention, pharmacies could do more to oversee small things such as the flu vaccination that she referred to and diabetes and glaucoma. As other hon. Members have mentioned, there are small things that pharmacists could do to take the pressure off GPs. Is that something the Government would consider—giving more responsibility to the pharmacist and taking pressure off GPs and accident and emergency?

[Jo Churchill]

If the hon. Gentleman will just bear with me for a second, he will hear me largely repeating what the right hon. Member for Rother Valley said when he so beautifully laid out the skills and expertise that lie in the pharmacy sector, and how they can be utilised better.

As I said, the deal sets out a programme of work we shall be working on. Our aim is that collaborative working across the system will deliver an integrated and accessible community health service for all. I want to name-check the hon. Member for Strangford here because, as he articulated, communication lies at the centre of this issue. One instance might be the digital expertise that the hon. Member for Washington and Sunderland West said exists in Gateshead, where people’s greater readiness to get services from pharmacists, and the fact that pharmacists can do more, is having a positive effect for patients.

First, pharmacists told us that we must utilise and unlock the potential of the highly skilled pharmacy teams that are embedded in communities throughout the country, including in the constituency of the hon. Member for Halifax, with everyone celebrating what pharmacists can deliver. That is why the settlement aims to deliver more fulfilling, patient-facing careers for community pharmacists and technicians, as highly valued members of the NHS team. Additionally, populations will be helped by much better services.

Secondly, pharmacists told us that they wanted continuity. The settlement funding over five years gives certainty, and gives community pharmacists the confidence to invest in their business. However, there is no one size fits all. Being in the centre of a town is not the same as being in a rural village. Looking at these things in the round is why we want this to be collaborative.

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.

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.

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.

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.