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.