Motor Neurone Disease Research: Government Funding

Chris Evans Excerpts

Tuesday 13th December 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I begin by thanking the hon. Member for Kingston upon Hull East (Karl Turner) for securing this debate. I too pay tribute to Doddie Weir, an incredible man who sadly passed away at the end of November. My thoughts are with his wife Kathy, and their sons, Hamish, Angus and Ben.

I had the good fortune to meet Doddie during an online roundtable—online because it was during the pandemic—and I was inspired by his campaign for a brighter future for people living with MND. His charity, the My Name’5 Doddie Foundation, works tirelessly to raise funds for research and provide grants to people living with this cruel condition.

During the pandemic, and again since, I also met with my Mid-Kent MNDA branch as a constituency MP. Those meetings are vivid in my mind. The first call I had with them had literally everybody on the call in tears, as we talked about the experiences of those suffering with MND and their carers—usually family members—and how they were seeing their loved ones losing a bit of themselves day by day to MND. It is such a cruel disease, as the hon. Gentleman said. I am thankful to him and to several other Members of Parliament who have campaigned for research funding and actively lobbied me and other Ministers on that point.

[Chris Evans (Islwyn) (Lab/Co-op)]

I refer Members to my entry in the Register of Members’ Financial Interests, and I am a biographer of Don Revie. This is an important debate, because Don, who played for Hull City during his playing career, passed away from motor neurone disease in 1989. Like Doddie Weir and Rob Burrow, he played sport at a high level. If the Government are going to invest in research, will they look at the fact that sportsmen seem to be more likely than the rest of the population to develop motor neurone disease?

Secondly, I urge the Minister to tell GPs to ensure that people are tested for motor neurone disease early in their journey, because the problem is that it is one of the last things people test for. In the case of Don, he believed that the pain in his back was caused by slipped discs—tragically, it was motor neurone disease. I ask the Minister to look into those two asks.

[Helen Whately]

The hon. Member makes two really important points. As he says, several prominent sportsmen who have been effective campaigners have sadly been affected by the disease, and there is a potential relationship with head injuries. He also made a point about the challenge of diagnosis, which I will take away.

The hon. Member for Kingston upon Hull East rightly talked about the tenacity of campaigners such as Rob Burrow and how effective their visible campaigning has been at raising awareness of MND. The disease affects a significant number of people, with around 5,000 suffering from it right now. Sadly, we know that people do not live very long with MND, so a really significant number of people across the country are being affected over time. It is incredibly cruel for the individuals who suffer.

I heard the request of the hon. Member for Kingston upon Hull East for a meeting, and I will come to some of the plans to address his calls in a moment. As I said, MND has a huge impact on those who have been diagnosed, and it is devastating for them and their families. We have made real progress in research, but we are yet to learn why motor neurones die off. There is still no cure for the disease and only one drug is licensed in the UK to treat MND, which is why the Government committed back in November 2021 to make at least £50 million available for MND research over the next five years.

Before I go into more about research, I want to say something about how we are supporting people living with MND, which is a degenerative condition—often rapidly so—that requires complex and anticipatory care. For that reason, the majority of services for people with MND are specialised and commissioned nationally in the 25 neurological treatment centres across England. In the absence of a cure, we want to make sure that people with MND have access to the best health and care support available to meet their complex needs. It is really important for people suffering from MND and their carers to have specialised and targeted support, including devices to help people with MND to be able to continue to communicate effectively for as long as possible, as well as other types of care.

Since November 2021, we have invested £790 million in the National Institute for Health and Care Research biomedical research centres, which bring together experts to translate scientific breakthroughs into treatments for patients. At the Sheffield centre, researchers have already pioneered evidence-based interventions to manage the symptoms of MND. In September, the Sheffield researchers published promising clinical trial results for the drug tofersen. Professor Dame Pamela Shaw, the director of the NIHR Sheffield BRC, said:

“I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function.”

I want to emphasise that because, until now, it has been very hard to be optimistic about developing a cure for MND or even effective treatment. The trial is, in fact, grounds for optimism against this cruel disease.

In June, the Government and charity partners invested in a £4.25 million collaborative partnership on MND, which includes LifeArc, the MND Association, the My Name’5 Doddie Foundation and MND Scotland. The Government are supporting groundbreaking research undertaken by the UK Dementia Research Institute. Seven of its 50 research programmes are dedicated specifically to MND, with world experts undertaking discovery science, translational and clinical research to drive medical progress.

There has already been work going on to invest in MND research, but I heard the impatience of the hon. Member for Kingston upon Hull East and have heard from other hon. Members. Indeed, my hon. Friend the Member for Northampton South (Andrew Lewer), who is here today, has also lobbied me and other Ministers on the desire for greater pace and so that money goes towards research quicker and then translates more quickly into treatments.

To that point, yesterday, we announced at the Department of Health and Social Care, together with the Secretary of State for BEIS, how we will deliver the full £50 million research commitment, which will build on our existing investments and successes to more rapidly fund MND research. In that regard, £30 million of Government funding will be invested immediately through specialist research centres and partnerships with leading researchers. That will include £12.5 million to the UK Dementia Research Institute to support groundbreaking research specifically into MND, a further £8 million investment into early-phase clinical research for MND via the NIHR biomedical research centres and £6 million for a translational accelerator that connects the DRI capabilities with those of the Francis Crick Institute, the Laboratory of Molecular Biology and the new MND collaborative partnership. We are investing a further £2 million in the MND collaborative partnership, which will specifically focus on data for MND research.

Childhood Cancers: Research

Chris Evans Excerpts

Monday 7th December 2020 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

I thank my hon. Friend the Member for Gower (Tonia Antoniazzi), a fellow member of the Petitions Committee, for introducing the debate. There is no greater champion of families affected by cancer, and I thank her for all the hard work that she does for them, week in, week out. In the short time available, I will tell the story of Izzy Withers, a constituent of mine who tragically passed away last year due to childhood cancer. Her mother Tracey shared their experience in the hope that it would highlight the desperate need in this country for more funding for childhood cancer treatment.

In August 2018, 16-year-old Izzy fell ill, and in September that year she received the devastating news that she had DIPG and a stage 4 brain tumour. DIPG is a highly malignant childhood brain cancer that disables the nervous system, and the prognosis is grim—fewer than 10% of children diagnosed survive longer than 18 months. That meant that Izzy was effectively handed a death sentence. DIPG is very resistant to chemotherapy; it is extremely difficult to treat. Tracey Withers described the tumour as like sand in grass. The treatment of Izzy, like that of Karen Armstrong, Neil Armstrong’s daughter, therefore consisted of radiotherapy, which in turn destroyed their healthy brain tissue. The radiotherapy affected Izzy’s ability to walk and use the left side of her body. She eventually lost all capacity to walk. After seven weeks at the Royal Gwent Hospital and two weeks at the Teenage Cancer Trust in Cardiff, Izzy and her mother spent 13 weeks living at Tŷ Hafan hospice. Tracey described Izzy’s illness and the effects of the treatment as a bit like locked-in syndrome. Her body shut down and she lost the ability to walk and move, and eventually she struggled to swallow. Children with DIPG die a protracted, painful and horrendous death. That is why more funding is needed for research to ensure that, in the future, children diagnosed with childhood cancers with a low survival rate and their families have more options.

For children such as Izzy, care is inadequate, and other, more practical factors increased the problems that Izzy and Tracey came up against in trying to get access to treatment. As Izzy was 16, she was not classed as a paediatric patient or an adult. That put her in administrative limbo. Hospitals were unaware of where she should be treated, who should treat her and who would foot the bill. That left Tracey with the extra burden of chasing hospitals for treatment and looking for counselling and other support. Tracey was often the one who had to find out where Izzy could receive care and what sort of care she could receive. That was yet another stress that she should not have had to deal with.

It goes without saying that caring for a child with cancer is phenomenally tough. Those parents care for their children emotionally and practically while trying to come to terms with the intricacies of their illnesses, all the while having to process that themselves and realising that they face what every parent dreads more than anything: outliving their own children. They should not be faced with added stresses and tasks because their children fall into the limbo between paediatric and adult care. That was also frustrating for the senior clinicians in charge of Izzy’s case, who felt that they were going round in circles over who would treat her.

Tracey received invaluable support from the Teenage Cancer Trust, CLIC Sargent and the Tŷ Hafan hospice. Those charities do incredible work for children with cancer, helping children and their families to navigate the medical and emotional sides of their illnesses. Without those charities, families such as Izzy’s would be completely lost. That is a failure on the part of the state to provide adequate care and funding for children with cancer. Izzy was given a dignified death thanks to the Tŷ Hafan hospice, which relies entirely on charity.

I say this to the Minister: three children died last week from DIPG alone. That is three families who now face a Christmas of grief. We must do more. The ring-fenced funding is not enough for a country that prides itself on scientific research. We could be leading the way, but we have failed to do enough. Some things go beyond politics, and this should be one of them. Few of us can imagine what Izzy’s family have gone through, but we must do more to stop others experiencing the same.

I want to end by thanking Izzy’s mother, Tracey, for allowing me to share her story, for her bravery and, above all, for her desire to ensure that no other family goes through what hers have been through. She said that she is praying that this is the start of a change that gives hope to families such as hers. I hope the Government listen and bring about real change.

Eating Disorders Awareness Week

Chris Evans Excerpts

Wednesday 27th February 2019 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Bailey. I congratulate the hon. Member for Angus (Kirstene Hair) on having secured this debate, especially during this important week—Eating Disorders Awareness Week. Last month, we had a debate on eating disorders, during which I revealed my own struggle with body dysmorphia when I was a teenager. Since then, I have gone on a journey. My mother spoke to me after that debate and asked, “Why didn’t you say anything?” I said, “Well, it was normal. That was how I thought everybody acted. I wanted to look that way, and it was normal and personal.” My mother said, “The only thing I noticed about you during that period was that you were a little bit obsessive and compulsive about things”, but that was a symptom of what I was going through.

I am one of the lucky ones, because my body dysmorphia went away on its own. I feel that I have gone on a journey since our previous debate. So many people have contacted me, including people I know or I have met through my job as a Member of Parliament, and talked about their personal struggles with eating disorders. Those I thought of as confident, or those I looked up to, have said to me that they struggled with the problem of an eating disorder. For them, it was a personal and private battle, as it was for me. I pay tribute to those people for the courage that they have shown in admitting that they had a problem.

I also pay tribute to Beat for all the work it does to ensure that people feel they have a safe space in which to talk about the problems they are going through. As the hon. Member for North Ayrshire and Arran (Patricia Gibson) has said, such a space did not exist when I was suffering from body dysmorphia in the 1990s, but it is there now. Another thing I learned when I met Hope Virgo and her fantastic Dump The Scales campaign team was that eating disorders are not necessarily about weight. So many people go to their GP, but get turned away because they are not light enough. They do not get help, so they turn to other mechanisms to cope.

A number of Members have talked about social media. I want to make it clear that in many respects, social media is a force for good. However, as the hon. Member for Angus said, there is so much pro-ana and pro-mia content, and it is widespread on social media. Instagram has made progress on banning images that contain suicide or self-harm. It has banned certain hashtags, but that does not stop people from going into them. It is a real problem. Some websites I have looked at are helpful and provide the type of support that sufferers of eating disorders need. People are allowed to post a diary. They meet a community that is there to help them, but other websites mask their communities. They start off by saying, “Yes, there is help for you”, but then it suddenly moves on to, “How to hide your eating disorder from your parent”, “How to hide your eating disorder from your school”, and “Anorexia and bulimia are normal.” I should make it clear that if someone does not have an eating disorder, those images of eating disorder will not bring one about. However, such images do affect the most vulnerable in society.

A recent BBC investigation in 2018 led to Instagram placing more harmful hashtags relating to eating disorders on an “unsearchable” list; if somebody enters one of those terms, no results will appear in the search box. Instagram now has more terms—including alternative spellings of “suicide” or “anorexia”, using “1” instead of “I”—that, when searched for, direct people to help and health warnings. One search term had 38 alternative spellings that could still be used by users to access harmful images. It is all very well Instagram using warm words to the Government about banning those harmful images, but it does not have moderators. It is self-moderated. If someone proactively searches for content that is against the rules, there is a good chance they will find it.

I do not want to eat into others’ time. I pay tribute to the hon. Member for Bath (Wera Hobhouse) for the work she has done in bringing eating disorders to the fore. I spoke in her earlier debate, too, so I will bring my remarks to a close. The Government have to be careful when they regulate social media. The content could simply be driven underground into WhatsApp groups or the dark web. I raised this issue with the Prime Minister a couple of weeks ago at Prime Minister’s questions. She agreed to the Minister for Digital and the Creative Industries meeting me, Beat and Hope Virgo, who has her Dump the Scales campaign, to talk about how we can bring about a system that discourages eating disorders and provides the support that people need. I make one advertisement for Hope’s campaign: if people have not signed her petition, please do so. She is up to 68,000 signatures this morning. She needs 100,000 for the petition to be debated here, so that we can bring about a serious debate on eating disorders.

I say this to anyone suffering from an eating disorder: you are not alone. Look at the people around this room—not just the MPs, but the people in the Public Gallery. There is support there for you. This is personal and private, but when you find the courage to talk about it, there are people there for you. I urge anyone with an eating disorder to find it in themselves to talk to someone.

Oral Answers to Questions

Chris Evans Excerpts

Tuesday 27th November 2018 Commons Chamber

[Chris Evans (Islwyn) (Lab/Co-op)]

22. Many children who are referred for treatment with problems related to being overweight might be suffering from eating disorders. Eating disorders come in all shapes and sizes, from anorexia right through to body dysmorphia. However, a recent ombudsman report says many people are facing longer waiting times and not receiving the help they need. Will the Government now prioritise ensuring people with eating disorders get the treatment they need?

[Steve Brine]

Through our work on parity of esteem for physical and mental health, we take eating disorders very seriously. That is not directly related to the child obesity plan, but we are absolutely determined to tackle weight challenges at either end of the scale, because I know that they affect a lot of people.

Terminal Illnesses: Continuing Healthcare

Chris Evans Excerpts

Wednesday 13th June 2018 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

I beg to move,

That this House has considered the Government’s policy on continuing healthcare for people with terminal illnesses.

It is a pleasure to serve under your chairmanship, Ms McDonagh, in this important debate this afternoon.

I rise to speak today as a member of the Public Accounts Committee, which in November last year held an inquiry into the National Audit Office’s report on NHS continuing healthcare funding. Although this particular issue concerns health policy in England and I am, of course, an MP for a Welsh constituency—you can probably tell that from my accent, Ms McDonagh—I secured this debate in my capacity as the secretary for the all-party parliamentary group on motor neurone disease, in which I have worked closely with the Continuing Healthcare Alliance, an organisation comprised of 17 different charities, including the Motor Neurone Disease Association and Parkinson’s UK.

Many of those charities’ long-held concerns were addressed in both the NAO report and the PAC inquiry, and we were all hopeful that the Government would finally address the many issues surrounding continuing healthcare, and rectify them to make the lives of those who suffer from ongoing or terminal illnesses that little bit easier. However, I am saddened to be standing here today to say that, judging by the Government’s response to the PAC report, that was wishful thinking. The PAC set out a number of recommendations for the Government with regard to continuing healthcare, which the Government have yet to fully take on board. That is disappointing, but unfortunately—I am sad to say—not surprising.

One of the key issues highlighted by the NAO and the PAC was how the clinical commissioning groups—CCGs for short; they are responsible for administering and approving eligibility for continuing healthcare—are not being held to account for delays in assessments and eligibility decisions. In 2015 and 2016, a third of patients had to wait for longer than 28 days for a decision on their eligibility for continuing healthcare. The Government said in their response to the PAC report that 80% of assessments are conducted within 28 days, and that they will regularly monitor the effectiveness of the assessment procedure. That percentage—80%—sounds huge, but I wonder and worry about the other 20% of patients who are not receiving such assessments.

However, the NAO report demonstrated that existing mechanisms are not effective in addressing CCG performance. Across the CCGs, the percentage of patients judged as eligible for continuing healthcare, or CHC, ranged from 41% to 86%, which suggests there are differences in the way each CCG interprets the national framework for eligibility. The Government are yet to address this variance and provide more concrete proposals for changes to the process.

What is more, the Government seem more concerned with hitting the 28-day decision target rather than with assessing whether judgments are accurate and in line with the national framework. They must be careful to ensure that the quality and accuracy of decisions are not compromised by the drive to meet targets. Although it is important to ensure that patients are not kept waiting too long for a decision on their eligibility, we must make sure that those in need of help are not deemed ineligible, so as to hit waiting time targets.

The PAC also recommended that the NHS and the Department of Health and Social Care do more to raise awareness of the availability of CHC among patients, their families, and health and social care specialists. According to the CHC Alliance, two thirds of people do not find out about CHC until very late in their journey in the health and social care system. Furthermore, a 2016 survey of MND patients found that although 30% of respondents were receiving CHC, 33% were not aware that it existed. As many will know, motor neurone disease is particularly cruel; most people who are diagnosed will pass away within 18 months of diagnosis.

The Committee asked the Government to update it on how awareness of CHC has been raised among the relevant groups. The Government have said they will carry out joint work with the NHS to understand awareness gaps and how the process for determining CHC eligibility is understood, with a plan of action ready by summer 2018. As of this month, June, patient organisations are still waiting to be approached regarding levels of CHC awareness.

Another area in which the Committee required more clarification from the Government was on how they plan to improve the quality of the assessment tools and staff and assessor training. The Committee has also asked the Government to be clear on how they plan to monitor the impact of changes in reducing variations in eligibility rates between CCGs. Rather than give a detailed response, the Government instead chose to refer to the recent changes made to the national framework. They also said they would carry out the work providing more insight into CCG variations by autumn 2018, but it remains to be seen whether they will keep to that deadline.

The CHC Alliance has reservations about the changes. The eligibility assessment tools include the decision support tool, which is a checklist for eligibility. That tool lies at the root of the eligibility issues with CHC, yet only minor cosmetic changes have been made to it. There are also issues with the definitions of severe and priority conditions in some care domains. They can lead to the impression that CHC eligibility is for terminally or morbidly ill patients only, which is simply not the case. Such misinterpretations of the framework contribute to the very low conversion rate between the checklist and those receiving eligibility. The rate was only 29% across 2015 and 2016, according to the NAO report.

There are further concerns surrounding the Government’s proposals to stop CHC eligibility decisions being made in acute or specialised hospitals. That will seriously disadvantage those patients in need of long-term care in such settings. For example, a spinal injury patient in a specialised spinal hospital could be at risk of losing out on CHC funding if the Government choose to remove eligibility assessments and decisions from those institutions. I urge the Government to seriously reconsider that proposal, as it does nothing to help those in desperate need of CHC funding and causes unnecessary worry and concern for their families, friends and carers.

I mentioned the inconsistency of approval rates for eligibility across CCGs. The Committee recommended that the NHS should establish some sort of oversight process to ensure that eligibility decisions are made consistently within and across CCGs, as well as setting out criteria to identify and investigate outliers in eligibility decisions so as to generate a greater understanding of the variance in eligibility outcomes.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate. There is no guiding framework for continuing healthcare in Northern Ireland, which makes getting a CHC assessment particularly challenging. It is unlikely to be offered or mentioned by someone’s local health or social care team, but it is definitely available. Does the hon. Gentleman agree that we need a UK-wide change in how CHC is managed for those who are terminally ill, instead of expecting phenomenal charities such as Macmillan to stand in the breach?

[Chris Evans]

I thank the hon. Gentleman for his intervention; he is always insightful. My experience is the same as his. Most people do not know about CHC. That is not just an issue for the Northern Irish, Scottish or Welsh Governments or whoever; it is a UK-wide issue. We are dealing with people who are near the end of their time on this earth, and we have a duty not just as politicians, but as human beings, to ensure that their time is as comfortable as humanly possible. I think the whole House would support us on that.

The Government’s response has been to try to dodge responsibility by saying that the NHS already has assurance mechanisms to hold non-compliant CCGs to account. Those are mechanisms that the NAO report demonstrated are not effective in eliminating unwarranted variation when it comes to eligibility decisions. The NHS has not been addressing CCGs’ non-compliance with the national framework. The Government need to help and encourage them to do so to ensure that accurate decisions are made and that people in need of help are not left struggling without it.

Perhaps most concerning of all, there has been little substantive stakeholder engagement with patient organisations representing those affected by inconsistencies and variation in eligibility outcomes. In my discussions with a range of organisations, that is the No. 1 problem. They do not believe they have been asked what they think of how the present system is working. The Government did not lead a full public consultation for the national framework revision, and the closed engagement process has left patient groups feeling unhappy, ignored and out of the loop. The revision was conducted over a very short period, with a very select group of consultees. It is little wonder that the changes made to the framework are so unsatisfactory given that those in receipt of care have not been consulted on what changes need to be made.

All the pledges to improve the framework and the eligibility process mean nothing if the changes are not properly funded, so it was disappointing to see the Government provide such a vague breakdown of the costing of efficiency savings in their response to the PAC inquiry. They expect to reduce spending by £855 million, yet no details are provided as to how those large cost savings will be achieved without limiting either eligibility or the support provided. The Government believe they can save £122 million by improving the commissioning of care packages and a further £293 million by allowing CCGs to locally deliver improvement initiatives. However, those savings in practice may refer to cuts to care packages. We need further assurance from the Government that care packages and support will not be sacrificed to save money. Sometimes, there are issues wider than saving money.

Overall, the Government’s response to the NAO report and the Committee inquiry is disappointing and lacklustre. As with many aspects of the Government’s health policy, it seems that they view the revisions to the framework as a money-saving project, rather than considering the detrimental impacts the changes may have on the patients and their families who are in desperate need of CHC funding. It feels as though the Government have learned nothing from the report and have taken none of the recommendations on board. I am sad to say that that seems typical of the Government in so many areas.

The response was not good enough. Further clarity is needed on the issues. I have mentioned that the changes need to be set in concrete. Through my role on the all-party parliamentary group for MND, I have met several MND patients. I have to pay tribute to the bravery of those who are suffering with MND, as well as their families. I pay tribute to their passion to help others. If anyone wants to see humanity in action, I ask them to go along to a Motor Neurone Disease Association meeting. What strikes me is that it is not about them or the sufferer; it is about the people who come after them.

All my life, I have counted myself as a socialist in the belief that I have as much responsibility for the person sitting next to me as I have for myself. I honestly believe that I see that all the time in the Motor Neurone Disease Association. I can only pay tribute to those people from the bottom of my heart for the work they do for families and for carers. Even after the ones they loved have gone, there are still people out there fighting for those with MND. I know the Minister is compassionate; I have often been very impressed with her work in this Department and as a Minister for Justice in a previous life, and I know she cares. I hope that today she will show that the Government she represents really care about these people.

Bowel Cancer Screening

Chris Evans Excerpts

Tuesday 1st May 2018 Westminster Hall

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman about the need for an optimal screening programme—I will come to that in a moment.

In Wales around 2,200 people are diagnosed with bowel cancer each year. Nearly half of those are diagnosed at a late stage. Approximately 900 people in Wales will die from bowel cancer every year, but 78% of patients will survive for one year or more, and 58% for five years or more. These figures are not mere statistics; every single extra day with the people we love is a great joy.

I lost my own mother, Pamela Symonds, to bowel cancer on new year’s day this year. She lived just under two years after her formal—too late, I am afraid—diagnosis. She was one of the 10,000 people diagnosed annually at the late stage of bowel cancer. I know only too well the impact that bowel cancer has on families.

[Chris Evans (Islwyn) (Lab/Co-op)]

I pass on my condolences to my hon. Friend. With all candour, I know what he is going through: I lost my father in 2003 to bowel cancer. He was just 51. Does my hon. Friend agree that we need to start screening people for bowel cancer at the age of 50?

[Nick Thomas-Symonds]

I absolutely agree with my hon. Friend and I pass on my condolences to him, even though the loss of his father was some time ago.

Along with my father Jeff, my wife Rebecca and my mother’s many friends, I supported her through three arduous rounds of chemotherapy, helping her to achieve her goal of living long enough to meet her grandson, my son William, who was born some three months after she was diagnosed. Owing to the care and treatment she received, her inspirational bravery and her sheer determination, she lived not only to see him born but to see him reach his first birthday in September 2017, and to see her beloved granddaughters, Matilda and Florence, reach the ages of eight and five—precious moments that are now my precious memories.

For families dealing with cancer, time is everything. Those who are diagnosed with bowel cancer have the best chance of surviving—and of surviving for much longer—if they are diagnosed at the earliest stage. This is why screening is so important.

Oral Answers to Questions

Chris Evans Excerpts

Tuesday 5th July 2016 Commons Chamber

[Jane Ellison]

Public Health England is doing a huge amount of work on this. There has been a very welcome drop in prescribing in the last year and that appears in the data available for this year. That gives us encouragement. Of course, 79% of antibiotic prescribing occurs outside hospital, so my hon. Friend is right to highlight general practices. I draw his attention to Public Health England’s Fingertips portal, which allows both providers and commissioners to assess how they are doing compared with other areas locally. That is allowing us to see where we have particular problems. It varies around the country and Public Health England is leading the action being taken in that regard.

[Chris Evans (Islwyn) (Lab/Co-op)]

The growth of antibiotic resistance is a massive problem worldwide, as the Minister knows. No new antibiotics have been classified for more than 25 years. This is a real problem, as antibiotic resistance increases. What are the Government doing to address the issue?

[Jane Ellison]

As I have said, it was our Prime Minister who commissioned the independent O’Neill review, showing astonishing foresight, and that review is now galvanising the discussion. I was at the World Health Assembly in Geneva in May, and the review was the talk of Geneva. Lord O’Neill presented it to many delegations from around the world and we now need to move forward. As well as working on human health, we are also looking to work with animal health organisations, as we take forward the very important recommendations on prescribing and the use of antibiotics as growth stimulators.

Diabetes-related Complications

Chris Evans Excerpts

Tuesday 7th June 2016 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

It is an honour to serve under your chairmanship, Mr Pritchard. I, too, congratulate my hon. Friend the Member for Dewsbury (Paula Sherriff) on securing this debate on diabetes-related complications. Diabetes is a huge public health issue in highly developed countries such as ours, and the complications of diabetes, if left unchecked, can be life-changing and, ultimately, fatal.

Approximately 4 million people live with diabetes in the UK—that is one in 16 of us—and more than half a million of those are undiagnosed and unaware that they have a potentially life-threatening condition. About 700 people are diagnosed with diabetes every day and it is estimated that, by 2025, 5 million people will have the disease.

Although we are not quite sure what causes type 1 diabetes, which affects approximately 10% of those with the disease, we know that the far more common type 2 diabetes can be caused by lifestyle factors. In 2014, Public Health England said that 90% of adults with type 2 diabetes are overweight or obese, and that men are five times more likely to develop type 2 diabetes if they have a waistline of more than 40.2 inches, while women with a waistline of more than 34.7 inches are three times more likely to develop the disease.

The link between unhealthy lifestyles and a higher risk of diabetes is clear and very well established. Is it any wonder that diabetes is on the rise when it is easier to live a sedentary lifestyle and eat unhealthily? We have more temptations, in terms of food, than ever before. The principle that prevention is always better than cure is particularly apt when we are thinking about diabetes and the serious complications that can arise from the disease.

In the first instance, it is imperative that everything that can be done is done to ensure that children and young people who have not yet developed the disease or become overweight are encouraged to lead healthy lifestyles. Schools have a very important part to play in that. They must ensure that pupils and parents are made aware of diabetes, including the causes of the disease and what might happen if they develop it. Sport in school is a fantastic way to get young people active, yet a University College London study in 2013 found that, of the 6,500 seven-year-olds included in the study, only 51% achieved the recommended hour of physical activity every day. That situation simply has to improve.

Although physical education lessons in schools often focus on competitive sports such as football, hockey, rugby and netball, they should also put emphasis on general fitness training. Schools should also be given the tools and resources that they need to encourage after-school sports clubs in addition to community-run sports clubs. The Rhymney Valley athletics club, based in my constituency, is a fantastic example of a community-run sports club for children and young people. On the occasions when I have had the opportunity to visit it, I have always been impressed by the enthusiasm of the coaches and the positive atmosphere that they create, which is impressed on the children. The number of children taking part is growing quickly, simply because they enjoy going. Whether they know it or not, by taking part in physical activity, they will be reducing their risk of type 2 diabetes and, more importantly, having fun along the way.

However, parents must bear much of the responsibility for ensuring that children lead a healthy and active lifestyle. It may be easier for parents to allow children and teenagers to eat sugary, high-fat treats with low nutritional value and drink sugary pop, but that puts their health at risk in the long term. The new tax on high-sugar drinks that was announced in March is a welcome step in the direction of tackling child obesity, and I hope that parents will take the message on board by encouraging children and teenagers to drink and eat more healthily. One of the most important skills taught to me by my mother was the ability to cook my own food—not to rely on ready meals, a takeaway or the fish shop, but to go home of a night and make myself a meal.

If young people do not develop a healthy lifestyle while they are at school, it is reasonable to expect that they will find it much harder to do so once they have left. If we make a serious effort to point children in a healthy direction from an early age, we will give them the best possible chance to avoid becoming overweight. It follows that, if they do not become overweight, they are less likely to develop diabetes and, as a result, less likely to suffer health complications caused by the disease.

Adult obesity in the United Kingdom is showing a sustained upwards trend. By 2014, more than 28% of adults were considered clinically obese, and that is expected to rise to one third by 2020. Overall, 62% of adults in the UK—a significant majority—are classed as overweight or obese. That is the third highest level in western Europe, and it is not a league table we particularly want to be at the top of. It is clear that, if we are to tackle excess weight and obesity to tackle diabetes, radical public action must be taken to reduce the UK’s average waistline.

A key reason for increasingly sedentary lifestyles is the rapid growth of office and desk work during the past few decades. Employees stuck behind a computer screen for most of the day do not get the opportunity to exercise, which we know is vital to maintaining a healthy weight. Perhaps great benefit would be gained if employers were incentivised to incorporate physical activity into office work or to set aside time during the working day for the desk-bound to exercise. The expansion of accessible after-work exercise clubs for all would also be a huge and radical step forward.

Incentives should be given for healthy eating. When living on a budget, as so many people are, it is often cheaper to eat unhealthily than healthily. That extraordinary situation must be turned on its head. Equally, disincentives such as the sugar tax should be used to discourage unhealthy eating. Only once we as a country have truly got to grips with our weight and obesity problem will we be able to prevent the very serious health complications caused by diabetes.

--- Later in debate ---

[Justin Madders (Ellesmere Port and Neston) (Lab)]

I congratulate my hon. Friend the Member for Dewsbury (Paula Sherriff) on securing this important debate and on the eloquent and powerful way she set out the issues in her opening speech. Several hon. Members have echoed what she said, and I will no doubt repeat it to an extent. After just a year as an MP she has established herself as one of the most effective campaigners in this place, and she is a passionate advocate on a range of issues—particularly public health matters. She spoke of her visit to King’s College with my hon. Friend the Member for Heywood and Middleton (Liz McInnes), and described the excellent care there, as well as mentioning the fact that, sadly, that experience is not replicated throughout the country. She highlighted the cost of diabetes and described education as a missed opportunity to reduce complications. That is a theme that has come through in several of the contributions today.

I also want to mention the contribution from the hon. Member for St Ives (Derek Thomas), who made a powerful point about what kind of future the next generation is heading towards, if we do not put more focus on the issue now. He gave us constituency-specific figures on amputations. I wonder whether all hon. Members would be interested to find out the specific figures for their constituencies. They really bring the issue home. I agree with the hon. Gentleman that the matter should not just be left to CCGs, and that there is a need for more co-ordinated national support. He was also right to say that we should aim to reach the point where amputation is seen as a failure and an exception.

My hon. Friend the Member for Islwyn (Chris Evans)—I hope that is the right pronunciation of his constituency—

[Chris Evans]

Someone once said it as “insulin”.

[Justin Madders]

We could have been forgiven for making that error today, but we will talk more about pronunciation afterwards. My hon. Friend spoke with great sincerity about the benefits for children of taking part in sport, and about how once they get into it they can enjoy the physical activity. I know from experience that dragging kids off the Xbox can be a difficult challenge, but once they actually get out there they enjoy themselves, and that contributes to a healthier lifestyle. He also made a valuable point about the world of work, in that so many more jobs are now sedentary in their nature. Of course, a healthy workforce is a more productive one, and productivity is a challenge for the whole country.

My hon. Friend the Member for Heywood and Middleton spoke with great experience of health. It was great to hear that she had been inspired by her visit to King’s College. She spoke about the national diabetes audit, and the importance of using the data collected to drive improvements. Again, she highlighted the need for more education. It was interesting to hear that some of her constituents have difficulty attending some education courses because employers are not agreeing to give them the time off. It will be interesting to hear the Minister’s reflections on that and it comes back to the point about a healthy workforce being a more productive one. We really need to get that message across to employers.

The hon. Member for Inverclyde (Ronnie Cowan) spoke about his family’s experience and gave us a useful personal insight into the everyday challenges faced. We can all reel off the figures but hearing from someone who has had a close relationship with the condition for a considerable length of time brings home some of the practical challenges that people face.

There is a consensus, as the hon. Member for Linlithgow and East Falkirk (Martyn Day) said. All hon. Members acknowledge that diabetes is one of the most significant healthcare challenges, given the impact that it has on NHS resources and, more importantly, the impact it has on people. We heard very powerful details of that today.

To put the condition in perspective statistically, 45 people in the UK will have been diagnosed with diabetes in the time it takes to complete today’s debate. In that time, one person will have undergone a diabetes-related amputation and four people will have died prematurely due to diabetes-related complications. According to figures produced by Diabetes UK, there are currently 4 million people living with diabetes in the UK, of whom 549,000 are undiagnosed.

The number of people with diabetes is increasing, as various hon. Members have said, and it has more than doubled since 1996. More than doubling the number of people with any condition in 20 years is bound to lead to serious questions about how our society is operating. Indeed, several hon. Members have given some good examples of the challenges we face. Part of our role is to question and support, where possible, how the Government respond to those challenges, particularly when we are talking about something that can be preventable. The level of interest shown by hon. Members today shows that there is at least recognition and agreement that the issue demands significant attention.

The number of people with a diagnosis is huge, as is the cost to the health service. The NHS now spends about £10 billion on diabetes each year, which is equivalent to about 10% of its budget, and £8 billion of that is estimated to be spent on complications, which, as we have discussed, are largely avoidable. Diabetes is an important issue to tackle at any time but, when we have such financial pressures on the NHS, it becomes even more pressing to really get on top of trying to avoid the complications it can cause.

At the heart of the issue are the people involved. Although many are able to manage their diabetes effectively, it is still a life-changing condition that has an impact on those living with it on a daily basis. We heard from the hon. Member for Inverclyde about how it really has an impact not only on the individual, but on their family. For somebody with type 2 diabetes, managing their condition means learning how to treat it with diet and exercise, and possibility coming to terms with the need to take medication and insulin. For someone with type 1 diabetes, it means constant diet management and carefully working out the correct amount of insulin to take. However, for everyone living with diabetes, it means being aware of the potential complications that can occur, and keeping a careful watch not only on blood glucose levels, but on cholesterol, weight, blood pressure and the conditions of eyes and feet.

Put simply, living with diabetes means becoming an expert on the condition. Despite that, less than 2% of newly diagnosed individuals with type 1 diabetes, and just 5.9% of those newly diagnosed with type 2 diabetes, attend a diabetes education course, which is a theme that has been mentioned by various hon. Members. Those figures alone are disappointing, but they are even more so given that there is clear evidence that the courses reduce the risk of individuals developing complications, and given the fact that a worrying 69% of people say that they do not fully understand their diabetes. The very nature of the condition means that self-management is the only practical way to reduce the risk of complications.

We welcome the publication of the Government’s new improvement and assessment framework for CCGs, which will assess CCGs on the attendance of structured education schemes and on the NICE recommended treatment targets. Will the Minister tell us what steps the Government are taking to improve access to diabetes self-management education, what steps she envisages taking against CCGs that perform poorly in the improvement assessment framework, and what support will be available to those identified as poor performers in order to bring them up to what is considered best practice?

Crohn’s and Colitis Treatment: England

Chris Evans Excerpts

Wednesday 24th February 2016 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

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

I, too, congratulate the hon. Member for St Albans (Mrs Main) on her outstanding speech and on bringing this important topic to the fore. I am delighted that we have had so many contributors today. I remember that when I held a debate in 2012 on employment opportunities for those with Crohn’s and colitis, I was the only speaker who was responded to by the Minister. I am glad that this issue has moved up the agenda somewhat since then.

Those with Crohn’s and colitis are often mixed up with those with irritable bowel syndrome—in fact, I admit that when I first heard of Crohn’s and colitis, I thought they were the same thing. I did not realise how debilitating and disabling they were, and how many people suffered in silence, and I really believed that it was time to shine a light on those things.

A recent Crohn’s and Colitis UK survey of pre-employed young people with inflammatory bowel disease showed that the prospect of gaining their first job was regarded as a daunting challenge. Employability emerged as their overriding concern, and when they found themselves in work, they found that they were often too embarrassed or scared to tell their employers about their needs. When I secured that debate—four years ago, nearly—I said that all we were calling for from employers was some understanding and some respect. However, with the welfare reform changes that lay ahead, I was deeply concerned that that was not going to be the case. That is why I am disappointed that the report found that 69% of the young people interviewed felt that their IBD had prevented them not only from reaching their full educational potential, but from having any chance of employment, with over half ruling out some sort of career option.

Back in January 2014, I took on an intern for three months who has Crohn’s disease. She completed her internship and I was very impressed by her work. There was an opening in my office and I offered her a job as my parliamentary research assistant, and she has been with me ever since—although I will say that in some parts of this speech she has written “irritable bowel disease” rather than “inflammatory bowel disease”, even though she herself suffers from the condition, but I will forgive her that. I was keen to take part in the internship programme, as I valued the idea of giving a younger member of the public an incredible career experience, while also teaching politicians such as myself about inflammatory bowel disease—she has written “irritable bowel disease” again, Sir Roger.

In January 2015, I hosted the parliamentary launch of the Work Foundation’s report on IBD and employment, alongside Crohn’s and Colitis UK—I am delighted they are here today, as the hon. Member for St Albans mentioned. In the UK, at least 300,000 people, or one in 210 people, have Crohn’s disease or ulcerative colitis, which are both known as inflammatory bowel disease. That equates to roughly around 460 people in each parliamentary constituency across the UK. These are incurable and relapsing chronic long-term conditions. The symptoms can be present at any age, but most commonly in the teens and twenties.

People with IBD are high users of health services, with 50% of patients with Crohn’s disease requiring surgery during their lifetime. I know this first hand, as my parliamentary researcher, who has Crohn’s disease, as I have mentioned, has had four operations in the two years she has been working in my office. In saying that, I pay tribute to Laura for her bravery, because, for something as private and embarrassing as some of the symptoms she has suffered from, she has not been afraid to bring that to the fore. We need more people like her, not only in politics but throughout working life.

Medical treatment will often include corticosteroids and immunosuppressants, including the biological therapies that are the latest treatments offered for inflammatory bowel disease. These conditions can have a devastating and life-stopping impact on a person’s life, due to the unpredictable nature of flare-ups, together with sleep deprivation, pain and fatigue, and they can severely affect an individual’s self-esteem.

There appears to be a low level of awareness of inflammatory bowel disease among the public, policy makers and clinicians. Public awareness of IBD is lower than it is for Parkinson’s and multiple sclerosis, as the hon. Member for St Albans mentioned, despite more people being affected by IBD than by both these conditions combined. The lack of public awareness is exacerbated by the stigma attached to the symptoms of IBD and the fact that it is a hidden illness.

Four years ago, I called for some understanding from employers. With debates such as this and events we have had in Parliament, I hope that understanding can come to the fore. If there is a message that should emerge from today’s debate from sufferers of IBD such as my hon. Friend the Member for Great Grimsby (Melanie Onn) and my parliamentary researcher, it is that there is no point in hiding IBD away. If someone is suffering, they should ask their employer for help. Most people I meet—I was a trade union official—are understanding. I have tried to be an understanding employer myself. Once people overcome that barrier, they will find that they can have a working life that is fruitful and that can lead to some great opportunities.

I had wanted to say more, Sir Roger, but I understand that there is a time limit. However, I will say this to anybody who suffers from Crohn’s or colitis: please do not hide away. If you are suffering, then speak to your employer. Speak to your teacher. Tell them what you are suffering from and they will be understanding. I genuinely believe that Crohn’s and colitis is as much of a problem for this country as dementia, whereas it is not mentioned because it is embarrassing—it is not something that we talk about. Crohn’s should be pushed up the political agenda, and I hope that with today’s debate we will do that.

Oral Answers to Questions

Chris Evans Excerpts

Tuesday 22nd November 2011 Commons Chamber

[Chris Evans (Islwyn) (Lab/Co-op)]

Is not there a danger that health and wellbeing boards will simply be a talking shop for bureaucrats?

[Paul Burstow]

No.