Diabetes: Tailored Prevention Messaging

George Howarth Excerpts

Thursday 24th October 2019 Westminster Hall

[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.

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairwomanship, Ms Buck. I am grateful to the hon. Member for Strangford (Jim Shannon) for bringing this important debate to the Chamber today and for his comprehensive introduction to the subject, which included his own personal experience. I speak in my capacity as co-secretary of the all-party parliamentary group for diabetes, and I recognise the hon. Gentleman’s active role as vice-chair of the group.

My interest in diabetes comes from my background as an NHS clinical scientist, as well as the major health issues presented to our communities by the prevalence of diabetes. My constituency has a higher than average incidence of diabetes—8.5% of the population compared with 6.7% overall in England—so I am always interested in what steps can be taken to improve control of the condition and what preventive measures can be taken to lessen the risk of type 2 diabetes developing.

I want to draw attention to the difference between type 1 and type 2 diabetes, and I sometimes think it would be helpful if we considered them to be two completely separate and distinct diseases. I stress that while being overweight or obese is a major risk factor in type 2 diabetes, type 1 is caused by the body not being able to produce enough insulin and is an autoimmune disease. Although diet and exercise have a role to play in type 1 diabetes management, they cannot reverse the disease or eliminate the need for insulin. It is important to stress that, because of the number of times I have stood in this Chamber and listened to MPs saying, “If only people would lose weight their diabetes would be cured.” It is misleading, and it is unfair to people who are unfortunate enough to suffer from type 1 diabetes.

[Sir George Howarth]

I am grateful that my hon. Friend made that point. She knows that I, too, insist that we deal with them as two separate diseases. There are consequences to the myth that everyone’s diabetes is lifestyle-related. In some cases children are bullied at school for having an autoimmune condition that they have no control over. Yet people believe they have caused it themselves.

[Liz McInnes]

My right hon. Friend is absolutely right. There is an unfortunate blame culture and children can be quite cruel to each other at times; we, as adults, must be careful about the language that we use about diabetes. If I achieve one thing in this place, I would like to get people to understand the difference between type 1 and type 2 diabetes—then I would feel as though I had achieved something.

Despite the growing public pressures associated with both type 1 and type 2 diabetes, a person living with diabetes only spends, on average, three hours a year with a clinician. People with diabetes are often put under a great deal of stress, because of the challenges and complexity in managing the condition and the multiple day-to-day decisions they have to make. In order to allow them to develop the necessary skills to manage their own condition, further support is required—including, but by no means limited to, weight management support.

This debate is very timely and follows a meeting we held in parliament in June of this year, which was attended by the hon. Member for Strangford and my right hon. Friend the Member for Knowsley (Sir George Howarth), among other MPs. The meeting was about realising the potential of health coaches in diabetes care, which the hon. Member for Strangford has already mentioned, and it was supported by Roche Diabetes Care—although of course I have to say that other diagnostic companies are available.

The meeting heard from health coaches about how they support participants in a lifestyle management programme, using their professional expertise as qualified nutritionists to support people to better manage their weight.

--- Later in debate ---

[Jo Churchill]

I certainly agree that good data and evidence lie at the heart of delivering good patient-centred programmes. I will take that issue away to look at it and write to him on it.

[Sir George Howarth]

Further to the points made by my right hon. Friend the Member for Leicester East (Keith Vaz), I tried to get information about waiting times in clinics and hospitals for various kinds of appointments related to diabetes out of the Minister’s Department, but I was unable to. When she looks at my right hon. Friend’s list, will she look at mine too?

[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.

Genetic Haemochromatosis

George Howarth Excerpts

Wednesday 3rd July 2019 Westminster Hall

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

It is an honour to serve under your chairmanship, Mr Sharma. I thank the hon. Member for Rugby (Mark Pawsey) for securing this important debate, and for his excellent and detailed speech, which set the scene. I congratulate him on establishing the all-party parliamentary group on genetic haemochromatosis earlier this year. I have set up a number of all-party parliamentary groups and am a big believer in them. I know how important they are in getting things one, cross-party, in this House. I am pleased that he was able to bring the condition to the House’s attention.

I thank all hon. Members who have spoken in the debate—in particular my hon. Friend the Member for Heywood and Middleton (Liz McInnes) and the hon. Members for West Dunbartonshire (Martin Docherty-Hughes), for Ceredigion (Ben Lake), and for Paisley and Renfrewshire North (Gavin Newlands)—as well as my hon. Friends who made helpful interventions.

As we have heard, GH is a genetic disorder that causes the body to absorb excessive amounts of iron from the diet. Iron overload occurs in one in every 200 people and is now recognised as the most common genetic disorder. Although GH cannot be prevented, its symptoms and health implications can. When untreated, GH can cause serious health problems, including fatigue, weight loss, irregular periods, type 2 diabetes, early menopause and depression.

GH was previously thought to be a low-level health risk, but a study by the University of Exeter found that the genetic condition usually quadruples the risk of liver disease and doubles the risk of arthritis and frailty in older age groups. As hon. Members have already said, treatment of those conditions comes at a huge cost to the NHS, so it is important to ensure that symptoms are prevented by diagnosing GH early and advising on how to avoid iron overload.

[Sir George Howarth (Knowsley) (Lab)]

My hon. Friend must have extra-sensory perception because I was going to ask if she agreed with everybody else who stressed the importance of early diagnosis, and she just did.

[Mrs Hodgson]

Excellent. If something is worth saying, it is worth saying more than once.

With early diagnosis in mind, I have a number of questions for the Minister; I will rattle through them quickly. What assessment has she made of the diagnosis pathway for patients suspected of having GH? How early are patients diagnosed after presenting with symptoms, and which diagnosis route is the most successful and least painful and invasive for patients? Is that diagnosis route available across NHS trusts and clinical commissioning groups? When someone is diagnosed, is it routine for their family to be tested and treated?

GH can be aggravated by environmental and lifestyle factors, so can the Minister assure the House that patients with GH are clearly advised on how to care for themselves if they have the disorder? Are patients given direct advice on their diet and on alcohol and tobacco consumption? As we have heard, that can make the condition easier to manage, if the advice is taken on board, of course—often people do not want to hear what is good for them, myself included. Where necessary, is support available to help patients reduce their alcohol consumption and to quit smoking?

As we know, diet, alcohol and tobacco consumption have huge health implications for all society and cost the NHS millions in treatment. It is therefore crucial that public health services are available to everyone to allow them to live heathier lives, especially patients with GH, who are more susceptible to health problems relating to the heart and liver.

I never miss an opportunity to call on the Minister once again—if she can; it might be above her pay grade—to reverse the public health budget cuts that have decimated our vital public health services. I also urge her to ensure that when the prevention Green Paper is published—I have heard rumours that it could be as early as Monday—patients with any existing conditions are also taken into consideration for prevention, so that their symptoms can be controlled, too. I look forward to her response.

Cystic Fibrosis Drugs: Orkambi

George Howarth Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

My hon. Friend is absolutely right.

[Sir George Howarth (Knowsley) (Lab)]

The hon. Gentleman is making a very powerful case that we all accept. A moment or two ago, he mentioned somebody he met earlier today who suffers not only from diabetes but from cystic fibrosis. Could we imagine a situation in which someone who has type 1 diabetes and needs insulin to survive has it taken away? Although the two conditions are completely different, is there not some equivalence between the two?

[Paul Scully]

The right hon. Gentleman is absolutely right; that is a really good point. Actually, the diabetes came from the cystic fibrosis, but he is right to talk about the medication in that way.

Hormone Pregnancy Tests

George Howarth Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Yasmin Qureshi]

My hon. Friend is absolutely right and I come on to explain how other bodies use meta-analysis to carry out assessment.

Does the Minister understand why we are asking why the data was not even properly assessed? When I tabled a parliamentary question to inquire whether the meta-analysis of the studies had been carried out, I was told that it had not. Can the Minister explain why not? One of the experts on the panel, Professor Stephen Evans, recently made a poor defence of meta-analysis not being used in the review, by relying heavily on a paper called, “Meta-analysis. Schemata analysis”, which was published 25 years ago. The expert working group seems not to have considered meta-analysis an appropriate way in which to assess the data. Why not? Why did it refuse to take an evidence-based approach?

Neither the Minister nor I is a scientist, but she is aware that meta-analysis is the statistical procedure that combines data from multiple studies. When treatment effect is consistent from one study to the next, as with Primodos, it is completely appropriate and evidence-based to use a meta-analysis to assess the data. Pharmaceutical companies use it to approve new drugs. The US Food and Drug Administration uses it. The European Medicines Agency uses it for the approval of drugs, and clinicians and researchers in medicine, education and the criminal justice system use it to determine whether a treatment works. The National Institute for Health and Care Excellence uses meta-analysis, and it is the cornerstone of Cochrane—previously known as the Cochrane Collaboration. The only group that discounts meta-analysis is the MHRA. Why? To say that meta-analysis was not the appropriate method is completely incompatible with an evidence-based approach.

Let me take up the matter of the independence of the expert working group. We have been told several times, by a number of Ministers, that the entire process was completely independent. It is my view that the Government are not well served by their current processes, the lack of independence and the lack of impartiality. What is in doubt is the question of whether the Government have the independent expertise required to hold Government bodies such as the MHRA to account and provide us with independent evidence with which to make informed decisions.

As the Minister is aware, in February 2018, Baroness Cumberlege began a joint non-scientific review into Primodos, sodium valproate and mesh implants, and we expect it to conclude in the next few months. Baroness Cumberlege invited the expert working group to give oral evidence to the review team, and this is how Ailsa Gebbie, the group’s chair, described herself at the beginning of an evidence session:

“I’m also the chair of the MHRA and the expert working group on hormones and women’s health that reviews all products and medicines and drugs related to women”.

What does independent mean if the chair describes herself in that way?

In 2015, the Commission on Human Medicines agreed to establish an expert working group to review the available data on a possible association between the hormone pregnancy test, Primodos, and adverse outcomes in pregnancy, and to make a recommendation. The commission appears to have commissioned the MHRA to do an independent review. Perhaps the independence of the MHRA can be summed up in its response to Marie Lyon, who in conversation with the agency had reminded it of its responsibility to the public interest. She was immediately corrected:

“No, the job of the MHRA is to represent Pharma”.

Of course, the agency is correct—it is substantially funded by the pharmaceutical industry and cannot be considered independent by any stretch of the imagination. Can the Minister explain why we are expected to have confidence in the independence of a review that was run by an organisation part-funded by pharma? How can we be expected to trust claims that Bayer, the manufacturer of Primodos, has no links to the MHRA? Yes, we had a review, but I am not sure we can call it independent. Will the Minister do the right thing and withdraw the expert working group report?

If the Minister needs any further evidence, perhaps I can point her to the testimony of Sandra Malcolm, a recent whistleblower. Mrs Malcolm worked for the manufacturer of Primodos, which is now owned by Bayer. While at the company in 1971, she discovered she was pregnant and spoke to colleagues:

“I was in reception one day and there were two guys there. One may have been a medical rep and he said to me ‘you want a dose of Primodos’ and the other said ‘I think it’s been taken off the market’, and the other one said ‘no, you can get it’. So with that information I went upstairs to see one of the doctors. I said ‘I’m a week overdue and can I have some Primodos?’ And he said ‘I can’t give it to you because it may not work and it may cause deformities’, so I thought that was a definite no.”

Mrs Malcolm said that after the conversation she decided not to take the drug “for obvious reasons” and that she assumed it was no longer on the market. However, many years later, when she saw a report about Primodos causing deformities, she was shocked to discover it had remained on the market for many years after problems had been listed.

Vast swathes of evidence clearly point to a cover-up by the drug company and the Government regulators at the time. It is utterly disgraceful that until this day the evidence has been ignored, as it was by the expert working group review.

[Mr George Howarth (Knowsley) (Lab)]

I am grateful to my hon. Friend, not just for securing the debate and for the way in which she has conducted it, but for her leadership on the issue over a long period. One of the more modern—I say modern; I think it was in the 19th century —versions of the Hippocratic oath is the principle, “Do no harm”. Does she agree—and she has made a powerful case for this—that as harm has been done we should acknowledge the consequences and deal with them appropriately?

[Yasmin Qureshi]

I thank my right hon. Friend for that intervention, and I absolutely agree with him. He may have realised what the ending of my speech was going to be, because that was a point I was going to make.

Not once did the expert working group mention the historical evidence in its review; not once did it look at those documents and acknowledge that there are questions to be answered. Primodos has been the cause of devastating effects, and much of the current suffering is the result of ongoing uncertainty. We must accept that we cannot achieve certainty in all things, but we can admit our failings. Victims of Primodos need an acknowledgement of liability, and it is time that we gave them an apology. When will the Government stop wasting time and public money by setting up these so-called independent ad hoc expert working groups each time scientific evidence clearly shows that the use of Primodos caused birth defects, just so they can dismiss the evidence and continue to cover up what one lawyer has called the biggest medical and legal cover-up of the 20th century?

On behalf of my four constituents and their families, and on behalf of thousands of families across the country and over 130 members of the all-party parliamentary group on hormone pregnancy tests, I urge the Minister to listen to these concerns, as well as those of other Members present. I urge her to be brave, and to have the courage to say “Enough is enough.” From today, let us stop putting our heads in the sand. Let us look at the evidence that Professor Heneghan has presented, and give Primodos victims the justice they deserve.

Services for People with Autism

George Howarth Excerpts

Thursday 21st March 2019 Commons Chamber

[Stephen Twigg]

My hon. Friend makes an excellent point, and I shall refer later in my speech to the Abbotts Lea special school in Liverpool, which is a shining example of the very best practice that exists in our education system.

Delays in diagnosing autism mean that many autistic people do not receive the support that they need, which can really harm their life chances. For too many families, securing the right support for their child at school is a hugely difficult task, and can become an all-consuming battle. The passport to receiving this extra support is an education, health and care—or EHC—plan, which is intended to bring together a child’s different needs in education, health and social care. Autism is the most common type of special need for school pupils who have an EHC plan. However, as budgets have been reduced, local councils often struggle to respond to demand, leading to EHC plans being refused or delayed well beyond the 20-week cut-off date by which a decision on whether to approve an EHC plan should be made.

[Mr George Howarth (Knowsley) (Lab)]

My hon. Friend is making an important point. In my experience—and, I suspect, that of others—the delays in getting an assessment are resulting in some parents having to pay between £2,000 and £3,000 out of their own pocket because they cannot afford to wait such a long time for their children to be assessed.

[Stephen Twigg]

My right hon. Friend makes an important point. This is one of the many aspects of this challenge that makes life very difficult for the families of children with autism, and we really need to do better by them.

Even those families who do get a plan are often not given the support they need. A report published by the all-party parliamentary group on autism found that only one in 10 parents was very satisfied with the process of agreeing an EHC plan for their child, with 60% saying that they was dissatisfied. In Liverpool, a recent Ofsted inspection into how Liverpool City Council and the local clinical commissioning group catered for children with special educational needs and disabilities found “significant concerns” and “long-standing issues” in local practice. In particular, the inspection found serious weaknesses in the EHC planning process as well as in the quality of the plans that were being made. In response to these concerns, the city council is required to submit a written statement of action to explain how Liverpool will tackle the areas of significant weakness identified.

I am pleased that the council is responding with the urgency that that report demands. It has responded positively, but we know that Liverpool is far from unique. In fact, a majority—more than 50%—of the SEND area inspections nationally have resulted in the requirement for a statement of written action. This is a huge national challenge.



Across the country, devastating cuts in local government funding have contributed to a crisis in funding for children with special education needs and councils are struggling to meet their statutory duties for children with autism. Data from freedom of information requests and council reports show that councils are overspending massively. Overspending on SEND has trebled in the past three years, and it is continuing to increase, with councils having to raid their overall schools budget for millions to respond to demand. Cuts to local authority budgets have further reduced the kind of support that used to be in place for social activities for children with autism and additional support for their families.

Despite this challenging environment, there are brilliant examples across the country of great support for autistic children and their families. In Liverpool, we have some truly outstanding special schools, and it is not just me saying that: Ofsted says that they are truly outstanding, too. They include three in my constituency—Redbridge, Bank View and Ernest Cookson—which serve children with autism.

I want to focus on Abbot’s Lea School, which is in fact in the constituency of my hon. Friend the Member for Garston and Halewood (Maria Eagle). The school caters for over 250 students from three to 19 years old, and its philosophy of education is the ASD model. I pay tribute to headteacher Ania Hildrey, who told me this week that she focuses equally on academic progress, specialist therapeutic support and development of life skills. She has transformed its curriculum, and she unapologetically aspires to be the best special school in the world.

Like so many other specialist schools, however, Abbot’s Lea is being held back from being able to provide the very best service, because local government funding does not go far enough to meet the demand for specialist placements or mainstream support. Ania told me that some of the welcome reforms in the Children and Families Act 2014 have not been implemented as planned, leading to poor school planning and a lack of joint commissioning. Delays in autism diagnosis often mean that schools receive referrals much later than they would like, and that limits schools’ ability to transform pupils’ lives.

Abbot’s Lea is keen to engage with both Government and the local authority to help shape the provision of education for children and young people with autism. I urge the Minister and her colleagues in the Department for Education to listen and engage with the concerns of brilliant headteachers such as Ania and with families in Liverpool and elsewhere and to work on a cross-Government basis to improve outcomes for children with autism. We urgently need to improve the quality of services provided to children, young people and their families, but that can be achieved only with proper resourcing and by ensuring that the barriers that still exist between our health and education systems are broken down. If we are truly going to make the progress that we all want to see, it is incumbent on us to listen to children and young people with autism, to their parents and families and to professionals, such as Ania Hildrey, who are working so hard to deliver the best in schools in Liverpool and around the country.

Diabetes

George Howarth Excerpts

Wednesday 9th January 2019 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

I congratulate the right hon. Member for South Holland and The Deepings (Sir John Hayes) on giving us the opportunity to debate this subject, and on the comprehensive way he introduced it. He rightly spoke about the potential of technology—I will say more about that in a moment—and about the distinction between those who deal with type 1 diabetes and those with type 2 diabetes. It is important always to make that distinction, because type 1 diabetes is an autoimmune condition over which the person involved has no control. It is not a lifestyle-related problem; someone is born with a predisposition to diabetes and something—we do not really understand what—will trigger it at some point in their life, often at a young age. There is also increasing incidence of people developing type 1 diabetes at an older age, which is a relatively new phenomenon. I will confine my remarks to type 1 diabetes and consider what can be done to help people better to manage their condition.

The Juvenile Diabetes Research Foundation is working with Cambridge University to develop an artificial pancreas. The problem with type 1 diabetes is that the pancreas does not work to produce the required levels of insulin—indeed, in most cases it produces no insulin at all. Currently, a person can have a device for continuous blood glucose monitoring, and if it is judged that the condition is not being managed satisfactorily, they can also have an insulin pump. Those are two separate devices; the beauty of the artificial pancreas is that through an algorithm the two are linked, so while the person receives continuous blood glucose level monitoring, the algorithm also enables the insulin pump to respond to a requirement for additional insulin, depending on the blood glucose level. The potential is enormous, and I commend the Juvenile Diabetes Research Foundation for its work. The technology the right hon. Gentleman referred to is now close to being so good that type 1 diabetes will become much easier to manage, which is important.

Before Christmas, I secured an Adjournment debate on the development of the artificial pancreas in which I mentioned the fact that people are now devising their own artificial pancreases. It seems mostly to involve young people who, in some cases, are technologically savvy enough to devise their own algorithms and link a blood glucose monitoring device to a pump. They are devising those devices in their bedrooms or other normal settings. Someone who is a bit older contacted me after the debate and said, “I didn’t devise this in my bedroom. I’m an engineer and I did it on the kitchen table.” The point is that people are capable of doing such things. I am not saying that that is the way forward, because although many of those devices work and people are pleased with the results of the things they have devised, it cannot be right that they are being left to create such devices on their own without them being quality assured and tested by people who are competent to do so. It shows, however, the potential of what people can do for themselves.

We should not fool ourselves into believing that technology will resolve all the problems, because the situation is difficult, particularly for some young people. Think about when we were teenagers: no matter how well disciplined or well behaved people are, the lifestyle of a teenager does not easily lend itself to monitoring a diabetic condition. Going out with a group of friends for a meal or drink and having to adjust one’s insulin level with an injection can be awkward. Young people also face challenges with the way their condition is perceived by their peer group. In some instances, people confuse type 1 and type 2 diabetes and young people in school get bullied on the basis that they have brought their diabetes on themselves because they eat too much sugar. I have seen examples of that. An autoimmune condition is not triggered by one’s lifestyle at all, yet people get bullied on that basis and it is important that they receive the necessary support.

One of my worries—I hope the Minister will try to address this when he responds to the debate—is that there is often a need for psychological, or even in some cases psychiatric, support because the challenges of being a young diabetic are such that people need other support. Schools, by the way, need better training in supporting pupils with diabetes. There have been examples of young people becoming hypoglycaemic and, when they have tried to raise their need to deal with it with the teacher, being told off and humiliated because they happen to have that condition at that time.

[Luke Graham]

The right hon. Gentleman makes a valid point. I have friends and family members with diabetes, and there are tell-tale signs. At the moment there is a great schools initiative to encourage teachers and students to do CPR and first aid; perhaps spotting the tell-tale signs of a hypo could be included in that package, and promoted in schools. Will he join me in supporting that?

[Mr Howarth]

Yes. I will not labour the point, but the hon. Gentleman is right. I would add that quite often teachers are left with such responsibilities, although they have enough challenges in their working life, but there is a need for someone in the school to have the expertise and to be trained to deal with young people with type 1 diabetes.

I know that I assured you, Mr Robertson, that I would try to be briefer than I have been, but I am coming to the end of my remarks, and the matter is important. I join the right hon. Member for South Holland and The Deepings in saying that it would be useful to have a meeting with the Minister to discuss the matter in more depth and get his thoughts on how to move forward. There is much that we can do to make people’s lives better. I hope that the debate will inform that process, and that we will be able to move forward on the basis of consensus across the House. The Minister faces challenges, and Members of this House will want to share the burden of them.

[Mr Laurence Robertson (in the Chair)]

I am looking to call the Scottish National party spokesman at 10.28, and we have two more hon. Members wanting to speak, so please bear that in mind.

Cancer Workforce and Early Diagnosis

George Howarth Excerpts

Tuesday 8th January 2019 Westminster Hall

[Several hon. Members rose—]

[Mr George Howarth (in the Chair)]

Order. This is an important subject and many Members have signified that they wish to speak in the debate. I will not impose a time limit straight away. I will see how it goes. If hon. Members co-operate, I am sure that everybody will be able to speak.

--- Later in debate ---

[Several hon. Members rose—]

[Mr George Howarth (in the Chair)]

I call Grahame Morris.

--- Later in debate ---

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

It is a pleasure to serve under your chairmanship, Mr Howarth. In case anyone wonders why I am shivering a bit, I have to say it is a bit cold in here.

[Mr George Howarth (in the Chair)]

But it is a very warm atmosphere.

[Mrs Hodgson]

Oh, good—we do try.

I start by congratulating my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) on securing this important and timely debate and on his excellent speech. I wonder whether he has a crystal ball and knew something that we did not; I am sure if he does, it will be much in demand, because we have an important vote next week and somebody might want to have a borrow. I thank all the other hon. Members who have spoken this morning—the hon. Members for Westmorland and Lonsdale (Tim Farron), for Eastbourne (Stephen Lloyd), for Strangford (Jim Shannon) and for Central Ayrshire (Dr Whitford), and my hon. Friends the Members for Easington (Grahame Morris), for Bristol West (Thangam Debbonaire), for Scunthorpe (Nic Dakin) and for Enfield, Southgate (Bambos Charalambous)—for their excellent contributions to the debate.

As we know, the long-term plan was launched yesterday. We had waited several months for it to be published, but I am pleased that, after a few setbacks and delays, we now have it and are able to move forward. I was also pleased to see that cancer is a key priority in the plan; I am sure the Minister played a large part in that. Cancer is important, but it is an emotive issue. One in two of us will face a cancer diagnosis in our lifetime, which is a sobering thought, and many of us in this Chamber will know someone who has been affected by cancer. Some of us, I know, have been affected by cancer individually, and no doubt some of us will have lost someone to cancer.

What led me initially to join the all-party parliamentary group on breast cancer as a new MP was losing my mother-in-law to breast cancer over 20 years ago. I notice that in this debate there is a gathering of former co-chairs of the all-party parliamentary group on breast cancer, as well as the current co-chairs of that group and the current chair of the all-party parliamentary group on cancer. Once this subject takes hold and catches our interest, it stays with us for the whole of our parliamentary career—as it should, because it is so important.

It is estimated that by 2035, one person every minute will be diagnosed with cancer. That is why cancer diagnosis, treatment and care and their workforces should play an important role in our NHS now and in the future. The Prime Minister set out in her conference speech last September the Government’s ambition to see three in four cancer patients diagnosed at an early stage within the next decade. Currently, just more than half of the people diagnosed with cancer are diagnosed early in England, so the Government have a long way to go to achieve that welcome ambition.

Early diagnosis improves the likelihood of survival, as we all know. For example, if bowel cancer is diagnosed at an early stage, nine in 10 people will survive, but if it is diagnosed late, at stage 4, only one in 10 will survive. Early diagnosis also increases the likelihood of responding well to treatment. Target Ovarian Cancer, which I am proud to say I am the chair of the all-party parliamentary group for, found that as many as one in every five women in England are too ill to treat by the time they receive their ovarian cancer diagnosis. Awareness and screening programmes are crucial to early diagnosis, but breast screening uptake, for example, is the lowest it has been in 10 years, with stark variations across the country. The percentage of women taking up their screening invitation within six months fell from 71.1% in 2016-17 to 70.5% in 2017-18. Some might say that is only 0.6%, but analysis by Breast Cancer Now has found that upward of 1,200 additional deaths could be prevented per annual cohort of eligible women if we were to increase screening uptake to the current target of 80% for individual breast cancer screening units. With 500,000 people projected to be diagnosed with cancer in 2035, it is clear that we must do more to ensure that cancer is diagnosed early so that it can be treated effectively.

The long-term plan, as I am sure everyone has read and the Minister will be aware, says:

“We will build on work to raise greater awareness of symptoms of cancer, lower the threshold for referral by GPs, accelerate access to diagnosis and treatment and maximise the number of cancers that we identify through screening. This includes the use of personalised and risk stratified screening and beginning to test the family members of cancer patients where they are at increased risk of cancer.”

That is all great, but the Government cannot make those improvements without improving the workforce, and they must not be complacent about the role our NHS workforce have to play in this. As we all know, that workforce do a wonderful job every day, treating, caring for and supporting us and our loved ones, as those who have witnessed it at first hand will attest. Unfortunately, the cancer workforce is at breaking point and already struggles to keep up with increasing demand. There are chronic staff shortages across the NHS, with vacancies for 102,000 staff, including nearly 41,000 nurses. As anyone who has ever worked somewhere with staff shortages will know, the pressure that places on an individual is huge. I cannot imagine what it is like for the NHS staff who work day in, day out under those pressures, when so much depends on their being able to do their job properly.

Cancer Research UK has pointed to chronic shortages in the diagnostic workforce, with more than one in 10 positions unfilled nationally. According to Breast Cancer Now, for every three breast radiologists who retire over the next five years, only two are expected to replace them. I know that others have already stated a lot of these facts, but they are worth stating twice. There is a similar problem with breast cancer clinical nurse specialists; Breast Cancer Care states that they are an ageing part of the workforce, with 45% of breast cancer clinical nurse specialists aged 50 or above. The Royal College of Radiologists has warned of a shortage of cancer doctors, with 5% of clinical oncologist posts vacant during the course of last year, up from a 3% vacancy rate in 2015. The Royal College of Nursing also warns that in England there are nearly 41,000 vacant registered nursing posts, and it predicts a dangerous increase to almost 48,000 by 2023 if the Government fail to take urgent action now.

The Government must take the issue of the cancer workforce incredibly seriously, as nearly every person who has spoken so far in the debate has said. Will the Minister provide a progress report on Health Education England’s cancer workforce plan, which was published just over a year ago? Additionally, will he please provide us with a date for when he expects the second workforce plan to be published? As others have said, “soon” is not good enough. The NHS long-term plan makes it clear that the funding available for additional investment in the workforce, in the form of training, education and continuing professional development through the Health Education England budget, has yet to be set by the Government. Can the Minister assure us that any workforce plan will be properly funded, so that the workforce gap can be filled as a matter of urgency?

The NHS long-term plan says:

“We will complete the £130 million upgrade of radiotherapy machines across England and commission the NHS new state-of-the-art Proton Beam facilities in London and Manchester”,

but staff will need to be trained on both how to use those new facilities and how to read the results. Education and training must be high on the agenda for the second workforce plan, including the reinstatement of the training bursary, removing any financial burdens and barriers so that we can recruit the nurses that we need for the future. It also means offering further training opportunities once qualified, so that staff can keep up to date with technological advances.

Our NHS should be the most attractive employer in the country, but without the financial backing and support from the Government we are failing to recruit and retain our hard-working NHS staff. Of course, as the Secretary of State continues to say, prevention is better than cure, but £96 million has been cut from public health budgets this financial year.

[Mr George Howarth (in the Chair)]

Order. I call the Minister.

--- Later in debate ---

[Steve Brine]

Yes. That is why the House gave all upper-tier local authorities the power to be effective public health authorities with ring-fenced public health budgets—£16 billion during this spending review period. Decisions will obviously be made about that going forward. One reason why we did that was our belief that, for example, my right hon. Friend’s borough will have different priorities and demographics from mine in Hampshire.

It is a statement of fact that I will clearly not be able to respond to every Member’s points in the short time that we have left. I will respond to everybody in writing, as I always assiduously do. I will try to take a few themes in the minutes that I have.

The hon. Members for Easington (Grahame Morris) and for Westmorland and Lonsdale (Tim Farron) touched on radiotherapy. I very much enjoyed our meeting, and I thank them again for their work. I will send the hon. Member for Easington a note with more detail on his point on tariffs, because I know that he and the hon. Member for Westmorland and Lonsdale are concerned about it.

The hon. Gentlemen also talked about the manifesto response. We await the publication of the new radiotherapy specification before we respond. It is an excellent piece of work that will address many of the recommendations made, and we expect it to be published very shortly. I am afraid to say that the long-term plan makes no commitment to a one-off investment. However, it commits to improving access to safer and more precise medicines, including advanced radiotherapy. That document is not the final word. It is a living document that I will work on while listening to all-party parliamentary groups such as their own.

The hon. Member for Westmorland and Lonsdale also talked about the radiotherapy review. There was a phenomenal response to NHS England’s consultation, not surprisingly—a lot of those were from the west country of England. The NHS will plough through that. I am putting great pressure on it to publish its report in response to that, which I am hoping, and am told, will be in early 2019.

The hon. Member for Central Ayrshire (Dr Whitford), otherwise known as the Member for the Irish sea a body of water, talked about prevention and smoking and child obesity and humour. I loved her reference to “poo in the post”. There is a great charity that talks about men’s bits called It’s in the Bag, which is good at promoting awareness of testicular cancer. She is right to talk about prevention. I am the Minister for Public Health and Primary Care, looking at prevention. The Secretary of State has made prevention one of his top three priorities, and she knows that it is key for me.

Smoking is still the biggest preventable killer in our country today, as I said in the House last night in the statutory instrument debate. We have published a world-leading plan on child obesity. We will consult very shortly. I try to be honest with the House at all times, and I hoped to get it out before Christmas, but there is an awful lot else going on and there is only so much I can get out the door at one time. However, I will get the 9 pm watershed consultation out the door. It is damned important that we do that. We said that we will, so we will.

The hon. Lady is absolutely right that prevention is better than cure, which is why the child obesity plan and Cancer Research UK’s work in that space has been very helpful.

[Mr George Howarth (in the Chair)]

I remind the Minister that he ought to leave a little bit of time for the mover of the motion to speak.

Diabetes: Artificial Pancreas

George Howarth Excerpts

Wednesday 12th December 2018 Commons Chamber

[Mr George Howarth (Knowsley) (Lab)]

I would like to begin with some acknowledgements to those who contributed towards the material that I will be using today, so let me place on record my thanks to Dr Jacq Allan from Birkbeck University and the charity Diabetics with Eating Disorders; Sandie Atkinson-Goulding; Dr Weston and Dr Zaidi from the Royal Liverpool University Hospital; the Juvenile Diabetes Research Foundation; Incisive Health; and Diabetes UK. I thank them all for sharing their expertise, briefing notes and academic work with me.

I intend to highlight the technology that is available for people with type 1 diabetes, point out some issues surrounding access to technologies and say a few words about the lack of structured education and psychological support available for type 1 diabetics. To conclude, I will make some suggestions to the Minister on what the Government can do to progress towards artificial pancreas systems.

Type 1 diabetes is an autoimmune condition, where an individual cannot naturally produce insulin. According to JDRF, this condition affects 400,000 people in the UK, of whom 29,000 are children. JDRF is leading on and funding the design of an artificial pancreas, which will change the lives of those affected by type 1 diabetes considerably. The artificial pancreas is in advanced human trials and the work in the UK is being led by Professor Roman Hovorka at the University of Cambridge, with funding from JDRF. Artificial pancreas systems automate blood-sugar management, dramatically reducing type 1 diabetes-related risks and improving the lives of people who have the condition. The artificial pancreas consists of a continuous glucose monitor, a computer programme and an insulin pump that work together to automatically control background insulin levels. These artificial pancreas systems, which may be a combination of existing or newly developed continuous glucose monitoring systems and insulin pump technology, have been termed the “artificial pancreas” because they monitor and adjust insulin levels just as the pancreas does in people who do not suffer from diabetes. Artificial pancreas systems have the potential to transform lives, particularly for those who find it difficult to maintain good blood-glucose control.

[Sandy Martin (Ipswich) (Lab)]

Does my right hon. Friend agree that simple continuous glucose monitors that are already available—I believe the Prime Minister wears one—are still not being allowed to children and young people who would benefit from them because some clinical commissioning groups do not prescribe them? When I asked the Secretary of State about this affair, I was told that the Department has no intention of monitoring what CCGs measure. Does my right hon. Friend agree that that is not a satisfactory state of affairs?

[Mr Howarth]

I am grateful to my hon. Friend for that intervention. He is right in what he says, and I will be covering precisely that point later in my speech.

A recent JDRF-funded trial found that the artificial pancreas is better at helping people to manage their glucose levels than the best currently available technology. People who used the artificial pancreas spent 65% of time with glucose levels in range, which compares with 54% of time for people using a continuous glucose monitor and an insulin pump. Unfortunately, as my hon. Friend mentioned, there are significant regional variations in access to existing diabetes technologies, such as insulin pumps, in many parts of the country. The most recent national diabetes audit, published in July 2018, shows that although the overall uptake of insulin pumps has increased, the proportion of people with type 1 diabetes attending specialist services who are treated with pumps varies from a pitiful 5% to 40% at best.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I do not know whether my right hon. Friend is familiar with a group called #WeAreNotWaiting. They are people who are developing their own equipment, pumps, monitoring system and computers, because they are not prepared to wait for technology that could be made available to help them.

As my right hon. Friend says, the pumps are available but not widely available on the NHS, despite being a leading British technology. Of course, the other problem is that there is no push from the Government for concerted commercial development of these systems in this country.

[Mr Howarth]

I am grateful to my hon. Friend for that intervention. I am aware of the #WeAreNotWaiting group and as recently as earlier today I had an email from one of them. I will not name them, because I do not have permission to do so.

[Jim Shannon (Strangford) (DUP)]

Will the right hon. Gentleman give way?

[Mr Howarth]

I will give way in a moment. I just want to finish answering the point made by my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe).

The email reads:

“As someone who has built an artificial pancreas using the open artificial pancreas system and is reaping the rewards from this technology, I just wanted to wish you good luck with this evening’s Adjournment debate. Having been a type 1 for 38 years, I can confirm that this is truly life-changing.”

Before I give way to the hon. Member for Strangford (Jim Shannon), I want to say a word about those who are manufacturing their own artificial pancreases. In some respects, we should celebrate that there are so many young people out there who have the ability to build what is in effect an artificial pancreas, while, at the same time, writing their own algorithms to link them together. That is truly amazing.

I have a background—this is a long time ago—in engineering and I cannot even conceive of doing that, so it is very encouraging that people are doing it. On the other hand, I worry. I have spoken to clinicians and one said to me, “I’ve looked at some of them and they are viable devices, but I worry about people building something that is not reliable and then relying upon it. There could be serious consequences down the line.” But this does show what is possible when people—in their bedrooms or in their mum and dad’s garage—are effectively able to control their own diabetes.

[Jim Shannon]

I congratulate the right hon. Gentleman on securing this debate on using modern technology to deal with diabetes. I declare an interest as a type 2 diabetic. I know other Members in the Chamber have similar ailments.

Northern Ireland has some of the highest levels of diabetes in the whole of the United Kingdom. We have the highest level of type 1 diabetics among children in the whole of the United Kingdom per head of population. That gives an idea of the importance of this debate.

I am very interested in the success of the artificial pancreas given to a teenager in Leeds. Does the right hon. Gentleman agree that this revolutionises both treatment and quality of life, but that it must be available throughout the whole of the United Kingdom of Great Britain and Northern Ireland? It must not be a postcode lottery. This must be available as a matter of course for those who fit the protocol. Will the Minister tell us how we can do that across the whole of the United Kingdom of Great Britain—Scotland, Wales, England—and Northern Ireland?

[Mr Howarth]

I am grateful to the hon. Gentleman, who must be psychic, because that is the very next point I was going to make.

There have been, as the hon. Gentleman says, postcode lottery-style problems with accessing the technology. For example, with FreeStyle Libre, a flash glucose monitoring device, patients in Liverpool are able to get it on prescription if they meet the criteria. That is very welcome, but many patients from outside the area cannot get one, as up to 30% of CCGs do not fund them. There needs to be more work done on that and I know the Government have made an announcement, which I will refer to in a moment.

Thanks to Diabetes UK’s campaign on 14 November, World Diabetes Day, NHS England announced that from April 2019 the FreeStyle Libre will be made available to all who meet the clinical criteria regardless of where they live. That is a very welcome development. I do not think it will apply to Northern Ireland, but I hope a similar policy is adopted in Northern Ireland. Innovation in diabetes technology is evolving rapidly in exciting ways.

[Liz McInnes (Heywood and Middleton) (Lab)]

I thank my right hon. Friend for giving way. To go back to the postcode lottery of funding, I wonder whether the Minister will talk in her winding-up speech about the work of the Scottish diabetes technology improvement plan, which was supported by £12 million of funding and has resulted in increased insulin pump usage in Scotland. I wonder whether we might emulate that scheme.

[Mr Howarth]

The common-sense approach is to look at what is going on elsewhere—in Scotland and in other parts of the world—to get the best of what is available and use it in the most effective way. My hon. Friend is quite right about that.

It is pointless giving type 1 diabetics the latest technologies, such as an artificial pancreas system, if they are not given structured education to support them to use the technology that is available. The limited uptake of educational programmes is a matter of great concern, and I hope the Minister shares that concern. Despite guidance from the National Institute for Health and Care Excellence, in 2014-15 only 2% of people newly diagnosed with type 1 diabetes were recorded as having attended structured education courses. For some, that lack of knowledge of the key principles of self-management is a major barrier to the use of technology, because without sufficient education, type 1 diabetics are not equipped to get the best results from the technology available.

[Sir Mike Penning (Hemel Hempstead) (Con)]

This is a very important debate and I am pleased we have time to listen to it. I will have to go and listen to my leader at 5 o’clock, so I apologise if I leave in the middle of the debate. With type 1 and type 2 diabetes, it is crucial to diagnose as early as possible. With type 1, which is very different from type 2, it is possible to diagnose very early on in the life of that person. Perhaps the right hon. Gentleman will allude to the differences between lifestyle issues and something that a person normally has when they are born. Surely the answer is testing early, so people can find out and have their educational needs met, and hopefully the product can be available across this great nation of ours.

[Mr Howarth]

I am glad that the right hon. Gentleman, who has a background in these matters, has drawn attention to the distinction between type 1 and type 2 diabetes. That is not to say that one is superior to the other, but they are two entirely different conditions brought about by entirely different circumstances. As I said in opening my speech, type 1 diabetes is an auto-immune condition. Nobody is entirely sure what triggers it in some people, but those in whom it is triggered have some predisposition towards the condition.

[Keith Vaz (Leicester East) (Lab)]

Will my right hon. Friend give way?

[Mr Howarth]

I have not quite finished answering the right hon. Member for Hemel Hempstead (Sir Mike Penning). It is particularly important to draw the distinction for young people because, often, young people with type 1 diabetes are bullied very cruelly on the basis that their peers in school accuse them of having brought it on themselves by eating too many sweets or too much sugar. Of course, that is complete nonsense, but that does not stop that kind of bullying taking place.

[Keith Vaz]

I congratulate my right hon. Friend on securing the debate and on being a champion for those with diabetes throughout his parliamentary career. Can I take him back to the issue of structured education, which is one of the great pillars of diabetes care? We do not do it well enough and we do not give those with type 1 diabetes enough support. Does he agree that it is important to ensure that all CCGs give proper consideration to who delivers that kind of education? It should not be delivered by anyone other than those with the expertise to deliver it.

[Mr Howarth]

Yes. I pay tribute to my right hon. Friend, who does a massive amount of work as chair of the all-party group on diabetes. He is very knowledgeable on the subject and the issues involved, and he is of course right. I think I had already said more or less the same thing as he just said, but obviously I agree with myself and with my right hon. Friend.

Let me move on to the digital solutions, such as apps, which could offer platforms to deliver education in a convenient and personalised format. I should add the rider that mobile apps need to be safe, reliable and accredited to be clinically safe. It worries me that some apps out there are produced commercially but do not contain wholly accurate information. It is unsafe to rely on apps that are not properly accredited and that have not been assessed and evaluated by experts who know what they are talking about.

In addition to the low uptake of structured education, the number of specialists working in diabetes care is falling. Between 2010 and 2012, there was a 3% fall in the number of NHS sites that employ any diabetes specialist nurses. Anyone who has any experience of dealing with young people with diabetes will know that nurse specialists are often the very best possible source of advice.

In the light of this shortage, a national network of centres—possibly between eight and 10 expert diabetes technology centres, supported by virtual clinics—could well be a potential platform for the development of more effective structured education for patients, and for professionals as well. I shall say more about that in a moment. Such a network would be helpful for training future generations of diabetes clinicians effectively to provide artificial pancreases, and in the development and evaluation of new technologies.

One of the problems that type 1 diabetes sufferers tell me that they experience is the merry-go-round of different services that they have to access. They may have a problem with neuropathy, or a foot or eye problem, but they cannot access all those services in one place. Many diabetologists, although brilliant at dealing with the diabetes side of the problem, are not equipped to deal with young people who have, for example, psychological problems. All the services need to be better integrated.

[Sir Mike Penning]

I do apologise, Madam Deputy Speaker, but I will have to slip away straight after this intervention.

One group of people the right hon. Gentleman missed out, although it was not intentional, was parents. When a child is diagnosed with type 1 diabetes, there is a journey for the parents as well as the child, so there needs to be support for them. I completely agree with the right hon. Gentleman that diabetes does not pick on certain people from certain areas; it just picks on an individual. Sometimes it is hereditary—a lot of work is being done around the hereditary route—but it is not a choice; it is something that comes on to the family, rather than just the individual.

[Mr Howarth]

The right hon. Gentleman is right, and it was an omission on my part not to have acknowledged that. Any parent of a diabetic child has to experience the disease—at second hand, but in very important ways. The younger the child, the more responsibility parents have to take, so that is important. By the way, training and other support for parents needs to be built into the system.

[Jim Shannon]

I just want to reinforce what we do for diabetics in Northern Ireland. The surgery that I belong to, in Cuan in Kircubbin, holds diabetic classes twice a year. The staff there do tests on all the diabetics—type 1 and type 2—including for their blood pressure, feet, eyes and all the other things they need to test in the clinics. The surgery then reports back on those tests. For instance, patients will get an eyesight test a month after they have been to the clinic. That shows that there are ways of dealing with this. I am not sure whether surgeries on the United Kingdom mainland do something just as good, but perhaps they should.

[Mr Howarth]

There are centres where people can access a lot of services in one place in a similar way to what the hon. Gentleman describes as happening in Northern Ireland.

I attended an interesting conference in Vancouver three or four years ago. I found out—the Minister or one of her colleagues might want to investigate this a bit further—that some of the smaller island states tend to provide all the services in one place because they do not have the capacity or resources to do anything else. It is an accident of geography that they are forced to do that, but it seems to work very well, particularly in some of the Pacific island areas, where there is a massive problem with type 2 diabetes.

[Mr Jim Cunningham (Coventry South) (Lab)]

I apologise for coming to the debate a bit late. My right hon. Friend may have touched on this; the issue affects not only families, but schools, which need to have a bigger appreciation of the difficulties that kids experience not only with diabetes, but in other areas. I had a private Member’s Bill some years ago that proposed a cluster of schools having a specialist who could spot early problems with children, including diabetes and all sorts of mental health problems. Does he agree that would be helpful?

[Mr Howarth]

My hon. Friend may have been late, but he is never behind. Of course I agree with him.

In October, I tabled a written parliamentary question to the Secretary of State for Health and Social Care, asking how many patients with type 1 diabetes had been referred for psychological support, psychiatric support, and treatment for an eating disorder or diabulimia in the last 12 months. I was told that the information is not held centrally. I then took the matter up with Knowsley clinical commissioning group, but it turns out that it does not hold that information either.

The lack of psychological support for adults and young people with type 1 diabetes is a real and important issue. It was one of the key points in the national service framework for diabetes when that was first brought into being. Most patients on Merseyside, which is my part of the world, still cannot get the support that they need.

Diabulimia, which is a syndrome, rather than a condition, is an eating disorder present among those with type 1 diabetes. It involves the omission of insulin doses, which leads to high blood glucose levels and the body’s cells being deprived of oxygen and energy. The available research suggests that around 40% of females between the ages of 15 and 30 with type 1 diabetes deliberately induce hyperglycaemia and diabetic ketoacidosis in order to bring about weight loss. Anyone can go on the internet and quite easily find out that if they omit to use their insulin, they can probably lose half a stone in a week, but of course the risks in involved in doing so, including damage to vital organs, should not be taken at all.

According to the charity Diabetics with Eating Disorders, 60% of all females with type 1 diabetes will have experienced a clinically diagnosable eating disorder by the age of 25, and new research suggests that 11% of adolescent males also engage in insulin omission for weight loss. I just want to pause at this point and say a word: although I am describing something that affects type 1 diabetics, it is all part of a wider problem of body image and an obsession with a particular type of weight range. Although diabetics, because of their condition, have a different means of achieving that weight loss, it is an issue that has to be addressed nationally. I know that the fashion industry, for example, has started to make some moves in that direction, but it is a national problem, particularly for many young women who feel that they have to look a certain way to be acceptable. That is, of course, nonsensical, but, nevertheless, it is the way that some of them feel.

Sandie Atkinson, a PhD candidate at Liverpool John Moores University, believes that there is a lot more that clinics can do to reduce the psychological impact of type 1 diabetes and, as a consequence, reduce the prevalence of diabulimia. She says:

“By being empathetic to the issues that impact blood glucose level outside of the realm of an individual’s ability to manage and having realistic expectations of them in light of these uncontrollable factors, individuals might feel less inclined to hide their true condition from Healthcare Professionals.  The likelihood of them being more open would undoubtedly be in the best interest of the patients and the NHS at large.”

While conducting her research, those whom Sandie spoke to described the problems that they had in accessing support in clinics. One participant said:

“Eating disorders thrive on secrecy and yet people feel with diabetes they can’t be honest about the expectations of where they are with control so there’s two lots of secrecy there that really does a lot more damage”.

A second interviewee said:

“There’s something about the way that we treat diabetes and I don’t know if it’s maybe because there is some internal stigma, but there’s something needs to be done…I just kind of feel like we’ve got it all wrong…right from the off you should have a psychologist…at least for the first year. I mean the research is all there, suicide risk goes up, self-harm risk goes up, mental health declines…We know this but we’re like, ‘oh yeah, we’ll see you in six months’ time’.”

To progress towards artificial pancreas systems, there are a number of things that the Government must do. The NHS needs to establish a new national framework that encourages innovation. The framework could include some of the following elements: first, a national strategy, with allocated funding, for diabetes technology, allowing all people with type 1 diabetes to self-manage their condition by considering individual medical need and the potential to improve quality of life and psychological aspects of care.

[Steve McCabe]

If the NHS were to develop that approach, would it not, as well as giving people much more freedom, autonomy and control over their life, produce massively more data—the strongest commodity in the NHS at the moment—which would mean that we could predict this condition, and look at other possible methods of controlling or treating it?

--- Later in debate ---

[Mr Howarth]

My hon. Friend is right, and I did highlight earlier that I was unable to get statistics, either centrally or at CCG level. It is important that we collect more data, interpret it properly, and use it to inform policy.

Secondly, there should be mandatory funding accompanying any positive guidance from the National Institute for Health and Care Excellence as part of a technology appraisal, and a national clinical consensus pathway that covers artificial pancreas technology, with NICE incorporating that into commissioning guidance. That sounds very bureaucratic, but if it was taken seriously, it could have a major positive impact.

Thirdly, there should be progressive procurement policies that recognise the value, within the foundations of artificial pancreas policy, of innovations such as continuous glucose monitoring and insulin pump therapy. We should encourage continuous glucose monitoring with integration capacity, and insulin pumps that have artificial pancreas potential. I would also encourage continued innovation in diabetes technology. If we are to progress towards an artificial pancreas, the foundations need to be better established across the country; that is in addition to the changes I have highlighted. A 2018 audit of the use of insulin pumps showed a positive increase in usage, but also highlighted a wide disparity between specialist services, which we have already mentioned.

[Sandy Martin]

Is it not the case that in CCG areas where specialist pumps and continuous glucose monitors are prescribed regularly, the amount of emergency care needed for people with type 1 diabetes is reduced? Not investing in those things makes no financial sense whatever.

[Mr Howarth]

My hon. Friend is right. This is not just about technology, important though that is. Anyone with diabetes who manages it well—and technology will help to do that—will have fewer hospital emergency admittances. I do not have the statistics to hand—I am not even sure they exist—but those people will clearly have fewer hospital admittances and fewer complications with their diabetes, and therefore cost the NHS less. As I am sure the Minister will acknowledge, however, the NHS is not very good at doing cost-benefit analysis. It needs to get smarter at it, because the point that my hon. Friend makes is right, not only as regards the support we give to people with type 1 diabetes, but about the cost to the NHS of dealing with the consequences.

[Liz McInnes]

I want to echo the point about cost-benefit analyses and how bad the NHS is at joining up different departments’ budgets. It really needs to get better at being able to identify that spend in one area leads to a huge reduction in spending in another.

[Mr Howarth]

My hon. Friend makes the point more clearly and eloquently than I did.

A new device that takes us closer to the artificial pancreas has been developed by Medtronic: the MiniMed 670G. A number of people with type 1 diabetes have started using the system in the UK in a pilot phase before it is rolled out more widely across the country. However, only 15.6% of those with type 1 diabetes are using insulin pumps, and it is potentially a concern that healthcare professionals would be unlikely to recommend an artificial pancreas if someone was not already using a pump and continuous glucose monitoring. If the issues to do with NHS access to today’s type 1 diabetes technology can be addressed, a path can be cleared towards adoption of the artificial pancreas.

We need to ensure that people living with diabetes are equipped with the skills to self-manage. That would support patients in using current technologies effectively, and ultimately in using artificial pancreas systems. Structured education is central to enabling people living with type 1 diabetes to best manage their condition through effective use of monitors and insulin pumps. The NHS can support type 1 diabetics to do that by increasing the provision and uptake of diabetes education. To do that, it needs to make diabetes education courses more accessible and convenient, possibly through digital solutions.

A recent survey by Dexcom revealed that more than three quarters of people with diabetes suffer from stress, anxiety attacks or bouts of deep depression. While healthcare teams help, and teach people how to manage their blood glucose levels, type 1 diabetes is largely a self-managed condition. The NHS needs to ensure that the resources and community support that people with type 1 diabetes require are well advertised, well recognised, well understood and well invested in. I believe we are on the threshold of being able to make type 1 diabetes not a thing of the past, but a thing that can be well and easily managed, and I hope the Minister will take these words seriously and do everything she can to advance that day.

NHS: Hysteroscopies

George Howarth Excerpts

Tuesday 11th December 2018 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Mr Howarth. It is an even bigger pleasure to respond to the hon. Member for West Ham (Lyn Brown). I pay tribute to the work she has done to highlight this issue, which has affected many women over many years who have been left to suffer in silence.

As the hon. Lady said, there were 47,000 signatures on the campaign petition, which is an indication of just how many women have been badly affected by what is actually a common procedure. It does not matter that it is only one in four, which is probably the most generous estimate. It could be as low as one in 10; it does not matter. We are talking about individuals who have been badly affected and who have been traumatised to the point where it effects their ability to look after themselves in the future. Frankly, it is no value to the NHS to leave those women suffering in silence, and I am very grateful to the hon. Lady for sharing the experiences of the women who have been brave enough to come forward.

The hon. Lady set me a challenge. She is quite right to demand swift action, because this has been going on for many years. She had four asks. On the first two, I will work with her and the campaign to make sure we can deliver them. They are extremely reasonable, to be brutally frank. On her third ask, we need to make sure that we have sufficient resource to enable women to exercise genuine, informed choice about how they take this procedure. On the fourth ask, about the tariff, notwithstanding the guidance about what might be best practice in most cases, we need to make sure that the tariff does not encourage perverse incentives that will disadvantage women. At the heart of all this, we need to ensure that running through every piece of treatment for women with gynaecological conditions is the ability to make informed and empowered choices—genuine choices. In that respect, I see the hon. Lady as a strong ally in working towards far better treatment for all women at the hands of the NHS.

The hon. Lady has given a great voice to people who have been through such terrible experiences. She again shared some of the distressing accounts of women for whom current practice has not been good enough. She is right that in the past not enough attention has been paid to a common procedure that generates harm to far too many women. I hope that the very fact of our debate today will shine a light on the situation, because the more we can do to spread awareness, the more women are empowered to look after themselves when facing treatment in the NHS. I hope that she will take some reassurance from the fact that I will continue to work with her to improve women’s health outcomes.

I also want to put something else on the record: the hon. Lady talked about a complete lack of humanity in how those women were treated. I would not be the first to say this—I have spoken to many female colleagues across the House as well—but we often feel that, when our reproductive organs are not being used for the purpose of having children, they are just an inconvenience. The NHS needs to do better. She mentioned my women’s health taskforce, and it is very much at the heart of that. As we go through life, the virtue of having our reproductive organs brings morbidities which are not always treated well in the NHS. We need to do better.

Hysteroscopy, as the hon. Lady explained, is a useful tool in the diagnosis and treatment of a number of conditions, such as the investigation of heavy menstrual bleeding, which affects as many as one in four women between the ages of 15 and 50. That gives some indication of just how many women might consider the procedure. Hysteroscopy is also used to treat fibroids and polyps, which are conditions that can cause long-term symptoms of pain and discomfort. The procedure is without doubt useful in treating women, so hysteroscopies have a role, but as she illustrated beautifully, they can be invasive and traumatic. We need only think about what the procedure involves to understand how traumatic it can be when it becomes painful.

Women’s least expectation of going through the procedure—this is crucial—is that they should be treated with sympathy and respect. They should also have full understanding before undertaking such an experience. As the hon. Lady explained, however, often women find themselves in profound shock at what is happening, and it does not always take place in the most appropriate setting. We clearly need to do better. Information is crucial in that regard: we need to ensure that nothing comes as a surprise.

I encourage women to access the NHS webpage on hysteroscopy, which includes information on what the procedure involves, the likely recovery period and the alternative procedures available. It notes that experiences of pain during a hysteroscopy can vary considerably from one woman to another but—the hon. Lady highlighted this point—I do not think that it properly reflects that, for women who have never had children, the pain can be particularly acute. We should consider the question whether it is ever appropriate for women who have not had children to have the procedure. Clearly, from the evidence she has presented to me, that is where the highest risk is.

I also feel strongly that merely giving information is not enough. Not only is this about providing clarity about what will happen and whether there are decision points for patients—some women will experience little or no pain, but for others it can be severe. We should also remember that for some women the hysteroscopy might be a first encounter with gynaecological services and that some might need to confront past pain or trauma. The hon. Lady has illustrated that well today. It is concerning when medical professionals do not prepare patients for the treatment in a sensitive way.

I fully agree with the hon. Lady that when a woman is clearly suffering during the procedure, it should be stopped. In any case, consent means that at any point people should be able to request that a procedure is stopped. It horrified me to read some of the accounts that she shared, such as women being held down and told, in essence, “You’ve got to continue this treatment or it will be worse for you.” That sort of conversation does not belong in 21st-century Britain in our fantastic NHS. I think we would all agree, women need to be treated better in that regard.

I also agree that we need better training on pain relief and managing women who are to have what can be a traumatic procedure. For practitioners, gynaecological procedures might be an everyday thing, but us women who present ourselves for such a procedure might have to have an out-of-body experience to go through it, because it is not comfortable—[Interruption]—excuse me—to have people engaged in that. We need more sensitivity—[Interruption.] Excuse me, Chair, I have a terrible cold.

The Royal College of Obstetricians and Gynaecologists has produced a guideline to provide clinicians with evidence-based information regarding outpatient hysteroscopy—[Interruption.] Excuse me—[Interruption.]

[Mr George Howarth (in the Chair)]

Order. The Minister is clearly in some distress. She must feel that she has more to say, but it would be perfectly in order if she wished to conclude the debate at this point. How can I put this? In these troubled times, it is really nice to see the amount of co-operation taking place across the Chamber. We have established that there is a consensus, so if she feels that she is still in some distress, it is perfectly acceptable if she wishes me to put the question, or we can continue—it is her choice.

[Jackie Doyle-Price]

I give way to the hon. Member for West Ham.

Phenylketonuria: Treatment and Support

George Howarth Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Twist]

I certainly do join the hon. Lady in that wish. I too have met BioMarin, which says it is prepared to negotiate significantly on the price, but we need to get in there and ensure that it happens quickly.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate my hon. Friend not only on securing this debate, but on the knowledgeable and passionate way in which she is putting the case. Does she agree that this is an example of the way that we in this country are very bad at dealing with rare conditions and potential therapies or treatments for them? Does she believe that, while this needs to be hurried up, the whole process needs to be streamlined and sped up?

[Liz Twist]

I certainly agree with my right hon. Friend. It has become clear, as we have looked into the issue, that there is a very complex way of assessing drugs. Clearly, we want to get the process right, but there needs to be a rigorous look at that process, not just for Kuvan, but for other treatments for rare diseases. PKU perhaps falls between the cracks, because it is not quite rare enough to be in that group, but it is still very rare, and will be pushed to the back of the queue if it goes into a more general group.

For those whom Kuvan will not help, and who still need to manage their diet carefully, there is another issue that must be addressed: access to low-protein foods, which help to maintain the diet. Individuals may be advised through their dietician and their specialist centre that they need a particular level of foodstuff supplies, such as the low-protein flour I mentioned, which I am told can be used in many ways to try to make the diet more palatable. General practitioners, however, may not have a complete understanding of the condition or the dietary needs, and may feel that patients are just trying to get food on the cheap, and they may limit or deny prescriptions for those foodstuffs. They may feel that they are like gluten-free foods, which can be bought at supermarkets.

The fact is that those foods and supplements cannot be bought; they are available only on prescription, and the absence of them creates a real injury to those affected. It is not just that they are not there; it is actually damaging if they are not available. It would be good if the Minister could address how we can ensure that GPs prescribe the specialist foodstuffs that form part of the treatment that those with PKU need, and how we can close the gap between the specialist services, clinical commissioning groups and GPs.