Eating Disorders Awareness Week

Thursday 29th February 2024 Westminster Hall

[Mr Philip Hollobone in the Chair]

15:00

[Wera Hobhouse (Bath) (LD)]

I beg to move,

That this House has considered Eating Disorders Awareness Week 2024.

It is a pleasure to serve with you in the Chair, Mr Hollobone. Across the UK, 1.25 million people have eating disorders, which include binge eating disorder, bulimia, anorexia, other specified feeding or eating disorders, and avoidant/restrictive food intake disorder.

Left undiagnosed and untreated, eating disorders can be silent killers. Anorexia has the highest mortality rate of any mental illness, and results from one study have shown that a third of people with binge eating disorder are at risk of suicide. For too long, sufferers have been left feeling trapped and alone. Urgent action is needed to tackle this rising epidemic.

The theme for Eating Disorders Awareness Week 2024 is avoidant/restrictive food intake disorder, or ARFID. The condition is characterised by a limited range of food intake. Sufferers may eat only “safe” foods, and can avoid entire food types. That means that they have difficulty meeting their nutritional and energy needs, and can experience weight loss and health problems.

ARFID can come from sensory sensitivity and fear of negative consequences from eating. Beliefs about weight and shape do not necessarily contribute. Be Body Positive, an NHS-backed psychoeducation website, has shared a story of what life can be like with this condition. Tahlia was diagnosed with ARFID when she was 20. She was initially misdiagnosed as a fussy eater before eventually being misdiagnosed with anorexia as a teenager as a result of her significant weight loss. Because she was misdiagnosed, she missed out on early vital treatment. In her own words:

“Growing up, I felt misunderstood and isolated because of my eating habits…Knowing that ARFID exists has been a validating experience, connecting me with a community of people who share similar challenges.”

The helpline run by Beat received more than 2,000 phone calls from people looking for support for ARFID last year—2,000 only last year! However, awareness of ARFID is still very limited. Misperceptions that it is just fussy eating leave sufferers like Tahlia feeling alone. There is no solid data on how many people in the UK have ARFID; it could be anywhere from less than 1% of the child and adolescent population to over 15%.

Because of those perceptions, accessing specialist treatment can be a lottery. There is a lack of standardised treatment pathways for ARFID, and it is hard to find out what support is available. A recent survey of NHS websites found that only six of the 55 NHS providers of eating-disorder services for children and young people explicitly stated that they provided treatment for ARFID, and only one of the 49 NHS providers of adult eating-disorder services said the same—one out of 49!

Rigid stereotypes of eating disorders persist in other areas. Despite their high prevalence, eating disorders are frequently misunderstood and viewed as a lifestyle choice. Contrary to popular belief, eating disorders are most common among people with severe obesity. I have been appalled by stories of people being turned away from treatment because their body mass index was too high, and have long supported Hope Virgo’s “Dump the Scales” campaign to change that.

National Institute for Health and Care Excellence guidelines state that single measures such as BMI should not be used to determine whether someone receives treatment. However, those guidelines are not being uniformly implemented. Some services are still using those barriers due to severe mismatch between demand and capacity in chronically underfunded services.

It is not uncommon for patients to get to a worryingly low BMI before they are considered appropriate for an in-patient bed. That requires investment, but eating disorder treatment is cost-effective at any stage. We know that early diagnosis is critical: the earlier someone receives intervention for their eating disorder, the more likely they are to make a full recovery. The longer symptoms are left untreated, the more difficult it is for someone to recover. Healthcare should focus on prevention before cure. Access to the right treatment and early support is life changing. If we want to save money, prevent hospital admissions, save lives and improve outcomes for all sufferers, we need to ensure full implementation of clinical guidance around diagnosis.

There are many wonderful organisations working up and down the country to get people the help they need. I pay tribute to SWEDA, previously known as the Somerset and Wessex Eating Disorders Association, which provides invaluable support to so many families across my local area and is expanding its operations this year. Last year, SWEDA told me that it saw a 150% increase in people attending support and guidance appointments for eating disorders compared with pre-pandemic figures. Its children’s service was overwhelmed with young people and their parents desperately seeking help.

Eating disorders wipe out adolescence. Young people suffering from eating disorders miss out on so many educational and social opportunities. Those years are stolen from them—not to mention the potentially irreversible effect on their physical health. I welcome the access and waiting time standards already set for children and young people’s services. However, those targets have still not been met; 6,000 children and young people are stuck on the NHS waiting list for treatment. In two thirds of those cases, patients have been waiting for over three months, despite the standard stating that for routine cases, treatment should start within a month. Between 2022 and 2023, fewer than three quarters of children’s urgent cases started treatment within one week—well below the 95% standard. If we have standards, the Government must provide the resources to meet them.

For adults, there are not even targets in place. Adult eating disorder services in England are severely under-resourced, especially now that demand has risen to even higher levels as a result of the pandemic. Those services typically have either long waiting lists or strict referral criteria. That means that many adults are unable to access the treatment they need until they have become very ill. On average, people wait almost three and a half years to get treatment for their eating disorder, and adults wait twice as long. Shockingly, sufferers are reaching the point of emergency hospitalisation before they can access care.

Delays have deadly consequences. In 2017, the parliamentary health and service ombudsman published a damning report into the failings that led to the death of 19-year-old Averil Hart from anorexia and that of two other adults with an eating disorder. Last February, the Health Service Journal identified at least 19 adults with eating disorders whose death sparked concerns from coroners about their care. At least 15 of those were deemed avoidable and resulted in formal warnings being issued to mental health chiefs. We can never allow that to happen again. We must remember that eating disorders are treatable.

Targets are crucial if we are to tackle this epidemic. An access and waiting time standard for adults would provoke significant extra funding and focus. If we want to encourage people to seek help, we need to give them a guarantee that they will be seen. Having clear standards can facilitate service improvement. They enhance the experience for patients and drive up health outcomes. Although there is still a way to go, the standards introduced for waiting times for children and young people’s eating disorder services have driven some crucial service improvements. We need to see the same for adults.

Our health service is simply neither equipped nor empowered to deal with eating disorders. I was disappointed that the Government decided against publishing a 10-year cross-Government mental health and wellbeing plan for England; instead, they developed and published a major conditions strategy, which included mental health alongside cancer, cardiovascular disease and dementia. We need targeted and varied strategies for targeted and varied issues.

I again point the Government towards Hope Virgo’s eating disorders manifesto. It calls for the Government to implement an evidence-based national eating disorders strategy, with a plan outlining how they will tackle the huge rise in the number of people affected by eating disorders. I would also like to see the appointment of an eating disorders prevention champion to co-ordinate the Government response.

The strategy should integrate obesity and eating disorder prevention plans, because there are so many overlapping factors between the two. The Government should also consider reforming treatment approaches. For example, an Oxford University study found that using the integrated CBT-E or enhanced cognitive behaviour therapy approach rather than the current in-patient approach reduced readmission rates for people with anorexia by 70% over the course of a year.

We should also consider the other available options. The all-party parliamentary group on eating disorders, which I chair, is currently conducting an inquiry into intensive out-patient treatment. Such programmes are designed to support people with severe eating disorders for whom traditional out-patient treatment is not working. Patients go home in the evening and at the weekends, and have access to increased meal support and therapy. They can be treated in a familiar community-based setting. Such programmes are recognised as an effective and less expensive alternative to in-patient care. Importantly, both patients and their loved ones often find this form of treatment far preferable to other forms of treatment.

However, intensive out-patient treatment is not widely available across the country and there is no up-to-date information about exactly how many services are providing it. Again, we return to the importance of appropriate early intervention. Universal access to intensive out-patient services could minimise the need for disruptive in-patient stays. I hope to hear comments from the Minister about investment in such treatments.

Much of what I am talking about comes back to resources. The Government funding needs to reach frontline services, but the APPG on eating disorders found that 90% of the additional NHS funding given to clinical commissioning groups for children’s services did not reach the frontline. The Government must ensure that their funding pledges are not empty words and that money gets to where it is needed. A one-off boost is not enough. Soaring demand for underfunded services will leave people missing out on care when they need it most.

To tackle eating disorders, we also need to understand them fully. From 2015 to 2019, eating disorders accounted for just 1% of the UK’s already severely limited mental health research funding. The APPG on eating disorders previously conducted an inquiry into eating disorder research funding, which found that a historic lack of investment has led to a vicious cycle of underfunding. The APPG also emphasised that we need to diversify the research agenda.

Certain eating disorders and patient groups have not been served by current research. That is a real barrier when it comes to efforts to improve care. We cannot identify the obstacles that exist without having more information. Some progress is being made. It has been encouraging to see some increased investment into eating disorder research and a commitment to actively involve people with lived experience in emerging research collaborations. We now need to see targeted investment and ringfenced funding.

Eating disorder sufferers are being abandoned. We are well aware that the NHS is in crisis. However, although we have heard harrowing stories about delays in ambulance services and accident and emergency departments, the impact on mental health services has received little attention. Eating disorders are an epidemic and the sooner we realise that, the sooner we can treat them with the attention they deserve. No one should be condemned to a life of illness and nor should anyone die of an eating disorder in 2024.

[Mr Philip Hollobone (in the Chair)]

This debate can last until 4.30 pm. I am obliged to call the Front Benchers no later than 3.57 pm and the guideline limits are 10 minutes for the SNP, 10 minutes for His Majesty’s Opposition and 10 minutes for the Minister. Then the mover of the motion will have two or three minutes at the end to sum up the debate. In the meantime, it is Back-Bench time. I call Olivia Blake to speak.

15:09

[Olivia Blake (Sheffield, Hallam) (Lab)]

I thank hon. Members across the House for their support in this debate, and I thank the hon. Member for Bath (Wera Hobhouse) for securing it. All the work that the APPG on eating disorders does is very much appreciated, and it rightly puts this issue back in front of us to discuss during each and every Eating Disorders Awareness Week. I also thank the Backbench Business Committee for granting us time to debate this issue.

Like many serious mental illnesses, eating disorders are often endured in silence. That means symptoms can go unnoticed, resulting in devastating consequences. Without diagnosis and treatment, eating disorders can be deadly. They have the biggest mortality rate of any mental health condition.

Around 1.25 million people in the UK live with disordered eating—a number that has inevitably been made worse by the pandemic. Although younger women are especially at risk of suffering from eating disorders, it is vital to remember that eating disorders can and do affect all people regardless of age, gender, ethnicity or background. So the general topic of today’s debate—Eating Disorders Awareness Week—is an important one, and it is especially important to one of my constituents.

I want to talk about someone I have been supporting for the past two years, who has shared her deeply distressing experience as an in-patient on a mental health ward. She spoke about the way in which she was

“reduced to numbers before receiving help.”

Despite not being able to eat, drink or take medication for five full days on the ward, and after asking for medical help, she was told she would only be referred once she had reached a specific blood pressure and blood sugar reading.

During my constituent’s ordeal, she was not provided with any support at mealtimes and, eventually, staff stopped asking if she wanted any food or drink. That resulted in her being transferred to another hospital in a critical condition and requiring emergency medical treatment in the ambulance on the way. As my constituent rightly told me,

“no one should ever be left to the point of medical emergency before needing help.”

It is right that we acknowledge the hard work of eating disorder specialist NHS workers and campaigners in my constituency and across the country, such as Hope Virgo, whom we have heard about, and many others. Specialist frontline workers continue to provide vital life-saving care in increasingly difficult circumstances and with increasingly scarce resources. We also need much more training in eating disorders for all frontline staff so that they understand how to treat patients in their care.

We know that eating disorder services are at breaking point. Demand is going up, cases are becoming more critical, training and resources are scarce, and the availability of support is a postcode lottery. This means that unacceptable cases such as this are inevitably becoming more and more common. The current system is failing. As I said last year, we face a crisis with terrible human consequences.

The specific theme of this year’s Eating Disorders Awareness Week is avoidant/restrictive food intake disorder. Anyone can have ARFID; it can affect children, teenagers and adults. Although it is a little known and often misunderstood condition, it can have serious consequences for health if left untreated. Too often, misconceptions about picky or fussy eating trivialise this serious condition. The stigma and fear of judgment means that those with ARFID and their carers often suffer in silence. The charity, Beat, has reported an increase in calls to its helpline from people affected by ARFID. In 2018, it received 295 inquiries about the disorder. By 2023, that had ballooned to 2,054 calls.

[Wera Hobhouse]

Does the hon. Member agree that this is also about the carers, care givers and the parents who need to know about the condition? They are often worried to death when they see a child or a young adolescent in such a condition and they do not know what to do.

[Olivia Blake]

I absolutely agree. I have had carers contacting me to ask where they can find guidance because of the limits locally, which I will go on to in a bit. That is probably why we have seen the increase in calls for support for carers.

Carers are hearing time and again that people are struggling to get the help that they desperately need. That is partly due to limited awareness, limited research on the condition and a lack of standardised treatment pathways. Today’s debate plays an important role in tackling the misconceptions in the system and raises awareness of a serious condition that can have fatal consequences if left untreated, due to malnutrition and other issues.

Another part of the problem is under-resourcing in the system. Since 2011, hospital admissions for eating disorders have nearly doubled in England, going from 2,287 to 4,462 last year, after peaking at 5,559 cases in the year 2021-22. Currently, 12.5% of 17 to 19-year-olds are estimated to suffer from disordered eating. Shockingly, an NHS England survey found that 59.4% of 17 to 19-year-olds exhibited behaviours that suggested it was possible that they had an eating disorder. Among girls, the figure rises to just over three quarters, at 77%.

While Ministers promised more funding, the scale of response simply is not matching the alarming level of demand. The waiting time targets for specialist eating disorder services for children and young people are consistently not met, even though they have only recently been put in place, while the lists have simply been growing longer and longer. As a bare minimum, there should be an action plan to address the backlog, and a similar target must be put in place for adults seeking help. That was part of a previous plan, but it has clearly been dropped in the major conditions strategy, which the hon. Member for Bath mentioned. Without a clear plan in place to meet those targets, it is really important that we make sure that care is available to people. All children and adults with an eating disorder should be able to get access to the care that they need.

It is not good enough to address the in-patient figures alone. We know that early intervention is the right treatment. The devastating consequences of eating disorders can be prevented, yet the Government have done very little to move us in the right direction towards preventive care.

Due to the delays in identification, referral and waiting times, those able to access treatment are waiting on average three and a half years between onset and start of treatment. That is far too long, when we know that the earlier we get to people, the better their chances. The delay is potentially fatal to many, with recovery being far more likely for patients who receive medical intervention early, when behaviour can be adapted before it becomes too ingrained. For ARFID, we need an NHS-commissioned treatment pathway and trained NHS staff so that people do not go undiagnosed or untreated, or sit in treatment pathways that are not suitable for their needs.

It is seven years since the Parliamentary and Health Service Ombudsman report, which has been mentioned. That report was damning. It concluded that patients had been failed by NHS eating disorder services. It is shameful that we cannot point to more progress in this area and that, since then, the ombudsman has felt the need to reiterate the findings of that report to try to get more action.

This crisis should be an opportunity to rethink our approach to how we support and treat people in the UK who suffer from an eating disorder. I urge the Minister to look at the transformative work that groups such as South Yorkshire Eating Disorder Association are doing to help build an alternative framework for care nationally. It is time that we acknowledged the crisis and committed the training and resources necessary to fix it.

15:23

[John McDonnell (Hayes and Harlington) (Lab)]

I congratulate the hon. Member for Bath (Wera Hobhouse) not just on securing this debate, but on her dogged pursuit of this issue over the years. The Minister should be aware that the all-party parliamentary group on eating disorders is one of the most active and effective in Parliament, as a result of her work. She has collected around her hon. Members, such as my hon. Friend the Member for Sheffield, Hallam (Olivia Blake), who are extremely committed in representing their constituents.

We all come to this issue as a result of dealing with our constituents and the hardships that they have faced. I thank Hope Virgo for her work, her campaign and the book she has written. If it was not for her, I do not think we would have been on this agenda as effectively as we have been in recent years.

I thank the Government as well because, early on, they recognised that there was an issue and brought forward some resources. I am grateful for that, but this is one of those issues where things are moving so rapidly in terms of the scale of the problem. We will have to come back to the Government regularly to look at how we top up those resources.

Much has been said about the statistics. I heard the figure of 1.25 million people mentioned and others have said 1.6 million, but it seems like a bottomless pit. The health survey was really interesting. If I remember rightly, it looked at those who had the potential for an eating disorder, so it was trying to get ahead of the numbers, and it said that 16% of the population—19% of women and 13% of men—could be at risk. One of the issues that the APPG has been really good at breaking through on is that this is not just about women; a large number of men are also affected by this problem, and that needs to be addressed.

In all these debates, we try to get across the impact and, to a certain extent, highlight to our constituents that we understand how their lives are affected. Of course, the mental health issues are fundamental. There have been suicides and deaths, but there has also been an outbreak of self-harm among people suffering from this condition. People have reported that there has been an impact on their ability to work, meet socially and engage in a full life. What has worried me most is the huge increase in the numbers being admitted to hospital—I think there has been a fourfold increase in recent years.

As has been said, this is the mental health condition with the highest mortality rate. Part of that is because there is a mismatch between the scale of the problem and the resources available, and that includes the number of hospital beds. I understand that there are only 450 specialist beds, but the admission rate is about 20,000, so there is a startling difference between what is needed and what has been provided.

[Wera Hobhouse]

Does the right hon. Gentleman agree that the biggest problem is that for too long, this condition has been seen as a lifestyle choice rather than an illness? We still need to make a breakthrough on that.

[John McDonnell]

Thanks to the work that the hon. Lady, the campaigners and others have done, the media reporting of this issue has, to a certain extent, changed dramatically, but that has taken years to achieve. I agree that this is still seen as a lifestyle choice. It is not seen as serious; people do not relate deaths to this condition, but we all know from dealing with our constituents that that is what happens.

The other issue about the access to hospitals and clinics is that we have all had to map out, across the country, where constituents can go. Often, what happens is that they are discharged from one unit and it is then almost impossible to get them into another, particularly if there are specialist concerns.

The issues that we are reiterating today include the fact that the funding needs reviewing again, because the situation has moved on since we last discussed funding with the Government. There is also a lack of clarity, so we need a concrete action plan for the coming period. One of the issues is how we bring people together. There is a real concern about the lack of monitoring. One of the proposals, which I think Hope Virgo first raised, is to have a discussion about how we are monitoring this situation, both in terms of incidents and the effectiveness of different treatments. A proposal from one of the discussions we had is that it is time to bring together again those with experience of the condition and the key clinicians in the field, so that we can stand back and objectively look at where we are at. When we have dealt with homicides and suicides in other fields, we have set up independent inquiries because of the seriousness of the matter. In some instances, I feel that we need some form of inquiry to see where we are at and what is needed in the future.

The hon. Member for Bath and my hon. Friend the Member for Sheffield, Hallam mentioned the staff. The impression I get from the discussions I have is that, because of the increasing demand, staff are experiencing a level of exhaustion and a morale issue about simply being able to cope with the numbers and severity of the conditions they are dealing with. One thing we can do today, as others have, is to acknowledge the commitment and dedication of those staff, while recognising that they need greater support, in terms of both numbers and pay, to demonstrate just how valued they are.

The issue around the NICE guidelines has already been raised, and my experience is the same as others’, really. It is hit or miss; there is a postcode lottery in the provision of treatment under the guidelines. The Dump the Scales campaign by Hope Virgo and others has been effective at moving the debate on from just talking about BMI, so that a wider range of discussions are now taking place, which I really welcome. However, there is still no recognition across services that eating disorders are a mental health issue, and that therefore mental health practices that have been effective elsewhere need to be applied here. I argue very strongly for the need to fund cognitive behavioural therapy, which has a success rate of 70%, I think. It has also reduced readmission rates down to about 15%, so it is a huge money saver for the NHS. Again, we need to look at the levels of investment, both in training staff for that and in ensuring access.

I want to mention another issue that has been raised before. We have found too many examples of the provision of palliative care to eating disorder sufferers, which we are hoping will end. Palliative care should be offered only if there is another life-threatening condition; it should not be offered just because of this condition. We hope that that has now been ended, but it needs monitoring again to ensure that the message is out there. Our overall view is that, with the right support and early enough intervention, people’s lives can be saved, and that their lives can be transformed as a result, but it does need adequate funding.

The hon. Member for Bath mentioned the ringfenced fund that is needed for research. At this stage, it is time to stand back, bring together sufferers and clinicians, and look at what the strategy should be. We need an adequately funded, concrete strategy that we can all sign up to. This is a cross-party issue; it is not party political. As I say, I welcome what the Government have done so far. We are now at the stage where we know so much more about the escalation of the problem and the need for therapeutic interventions, and about what works and what does not.

My final point is to pay tribute, as others have done, to all the campaigners who have put this issue on the agenda and provided support throughout. I pay tribute to all the clinicians, of course, and to one group in particular, which is the school nurses—Members may recall that we held a session with them. They brought forward their programme for how they would provide advice and assistance to pupils, which proved to be incredibly effective. Of course, I also pay tribute to all those who have supported the all-party parliamentary group of the hon. Member for Bath with such expert advice, as well as consistent nagging.

[Mr Philip Hollobone (in the Chair)]

We now come to the Front Benchers, the first of whom will be Patricia Gibson for the SNP.

15:33

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

I wish to begin, as others have, by congratulating the hon. Member for Bath (Wera Hobhouse) on bringing forward this debate in Eating Disorders Awareness Week. I am very glad to once again participate in this debate, as I have done in the past. When I have spoken in this debate previously, I have always begun by pointing out that I first became aware of eating disorder conditions in the 1980s, when Karen Carpenter died, and then again in 1999, when Lena Zavaroni died. Both women had struggled with eating disorders for a number of years and sadly succumbed to them, when they ought to have had so many years ahead of them.

An estimated 1.25 million people across the UK face a similar struggle. Eating disorders, as we have heard, do not respect age, ethnicity, gender or background. Indeed, a quarter of those with eating disorders are men.

The mortality rate is high, especially for those with anorexia, which has the highest mortality rate of any mental illness, and one in six people with binge eating disorder attempt to end their lives. Other mental health challenges can often accompany eating disorders, such as depression, self-harm, anxiety and obsessive behaviours. Eating is fundamental to survival, so those with eating disorders typically develop severe physical health problems. Yet we know that, with the right support and treatment, we can change lives, and early intervention provides the best chance for recovery.

Eating Disorders Awareness Week this year seeks to highlight avoidant/restrictive food intake disorder, or ARFID, which is a relatively new term. It is different from other restrictive eating disorders in that it describes a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity. Sometimes those with it eat very small amounts. Avoidant and restrictive eating is not related to a lack of available food, cultural norms or even fasting for religious reasons, and it is not related to a person’s view of their body shape or a specific purpose, such as losing weight. Nor does it feature some of the other behaviours that can be associated with anorexia or bulimia, such as over-exercising. ARFID is often dismissed as picky eating, but the crucial difference between what we might call a picky eater and a child with ARFID is that a picky eater will not starve themselves to death. A child with ARFID very well might.

While the exact causes of ARFID are unknown, it is thought that people who develop it do so because of sensory sensitivity, fear of negative consequences or a lack of interest in eating. For example, they might be very sensitive to the taste, texture or appearance of certain types of food, or have had a distressing experience with food, such as choking, vomiting, infant acid reflex or other gastrointestinal conditions. That may cause the person to develop feelings of fear and anxiety around food, leading them to avoid it. It does not discriminate; it can affect anyone of any age, including even babies, and can be diagnosed in children as young as three.

Researchers know much less about what puts someone at risk of developing ARFID, but it has been discovered that people with autism spectrum conditions are much more likely to develop the condition, as are those with attention deficit hyperactivity disorder and intellectual disabilities. In addition, children who do not outgrow what we might call “normal picky eating”, or in whom picky eating is severe, appear to be more likely to develop ARFID. Many children with ARFID have a co-occurring anxiety disorder, and they are also at high risk for other psychiatric disorders.

According to Beat, the UK’s largest eating disorder charity,

“There has been a sevenfold increase in calls to our Helpline”

related specifically to ARFID over the past five years. The variable service provision for the condition is due partly to the lack of research into treatment. The Scottish Government have provided Beat with more than £600,000 to provide a range of support for those affected by an eating disorder, but performance still varies across health boards. There must be no complacency. To help tackle that, a consultation was undertaken on the draft national specification for the care and treatment of eating disorders in Scotland to ensure that support and services meet the needs of those living with an eating disorder, wherever and whoever they are in Scotland. The responses to the consultation will be considered carefully.

When a person has an eating disorder of any kind, they need compassionate support with their mental and physical health. Their loved ones also need support, because this is a condition that affects whole families and not just individuals. Indeed, very often, it is close loved ones who are the first to pick up on the fact that their beloved family member has an eating disorder. There is nothing worse for them than watching their loved one’s mental and physical health deteriorate before their eyes from a condition that is often not well understood and, sadly, not always sufficiently supported through prompt and sensitive treatment.

I am glad that we are once again having this important debate on this condition in Eating Disorders Awareness Week and taking the opportunity to raise awareness of eating disorders in general and, this year, of avoidant/restrictive food intake disorder. Much more research needs to be done into that, and I confess that I knew almost nothing about it before I started preparing for the debate. I hope debates like this one will help those living with an eating disorder and their loved ones to feel less alone, because it can be an isolating illness for individuals and their families, which can only compound the pain and fear that this condition often generates.

15:40

[Abena Oppong-Asare (Erith and Thamesmead) (Lab)]

It is a pleasure to serve with you in the Chair, Mr Hollobone. I want to start by praising the hon. Member for Bath (Wera Hobhouse) and my hon. Friend the Member for Sheffield, Hallam (Olivia Blake). They are true champions of those suffering from eating disorders or mental health issues, especially our children and young people. I congratulate them on securing the debate and on their excellent contributions, as well as their continued work through the APPG on eating disorders to help champion this issue. They have put this issue on the national radar and have worked effectively cross-party to try to eradicate the epidemic of eating disorders.

I also thank my right hon. Friend the Member for Hayes and Harlington (John McDonnell), who talked passionately about the impact that eating disorders have on individuals and highlighted the fact that we need to understand the impact they have on people’s lives, including at work. He also talked about the huge spike in hospitalisation figures.

I want to touch on some of the points mentioned by the hon. Member for Bath, who used powerful statistics to make the growing problem of eating disorders hit home. She highlighted the disparity between areas in how high up the agenda the issue is—it is not always high up the agenda—and talked about the importance of carers and parents knowing more about the condition so they can help to address it. That was echoed by my hon. Friend the Member for Sheffield, Hallam, who talked passionately about her constituent, who said she was “reduced to numbers” before receiving help. She also highlighted something that hit home with me when she spoke about how her constituent had said that no one should be “left to a medical emergency” before getting help, and that there should be standardised treatment for this particular matter.

I am pleased to speak on behalf of the Opposition to mark Eating Disorders Awareness Week. As many people in the room will be aware, eating disorders are serious mental illnesses that can have severe consequences. It is estimated that over 1 million people in the UK live with an eating disorder, and the reality is that for far too long, those suffering have been ignored. Eating disorders are responsible for more loss of life than any other mental health condition, as has been said. Unfortunately, as we have seen with the statistics raised in the debate, it is increasingly becoming quite common. The sooner someone receives treatment, the better their chances for making a full and sustained recovery, yet that is often not the case. It is a credit to the many campaigners and parliamentary colleagues in this room who have been working on this, along with vital charities, such as Beat, that we can say progress has been made in awareness and support. However, as we continue to face the severe consequences of the pandemic, we see a mental health crisis across our country. We all know that so much more urgently needs to be done.

The NHS figures suggest that the proportion of those aged 17 to 19 with an eating disorder stands at 12%, which is up from just 0.8% six years ago. Hospital admissions are double what they were a decade ago, and last year the awareness week focused on the specific challenges for men.

I also want to quickly echo the point made my hon. Friend the Member for Sheffield, Hallam, as well as other Members, on the importance of recognising that eating disorders do not discriminate. They affect any age, ethnicity, gender or socioeconomic background. It is important to highlight those facts when continuing to break down the stigmas and stereotypes that prevent so many people from reaching out and receiving much needed help.

This year, Beat has focused its attention on another important issue that has often been overlooked—avoidant/restrictive food intake disorder. It can affect anyone of any age, and Beat has estimated that the number of people with that disorder in the UK could be over 200,000. It can be very difficult to diagnose, and as Beat has highlighted, the information available to those seeking help can be very limited, which echoes what has been said by hon. Members today about parents and carers not having sufficient information on how to address these issues. For example, it has been highlighted that eight in 10 eating disorder service providers do not state on their website whether they offer ARFID care.

The data clearly shows that such cases, like all eating disorders, have surged in recent years across the UK. However, as cases have risen, services have struggled to match the demand, which means more waiting in anguish for longer. In 2015, the Government introduced new waiting times and access standards for community-based eating disorder services for children and young people. That included targets for one-week urgent treatment and four-week routine treatment, but those targets have never been met. I would be grateful if the Minister could tell us what will be done to address that failure. Meeting those targets is much needed. Instead of meeting those targets last year, one in five patients with non-urgent referrals were not seen within four weeks, and one in three patients with urgent referrals were not seen within a week. When children and young people with urgent cases of eating disorders wait more than 12 weeks to start treatment, the severity of the current crisis cannot be overlooked.

I also want to raise the important issue of providing adequate care to adults. As highlighted by the HSJ report last year, the deaths of 19 eating disorder patients, with at least 15 of those being deemed avoidable, demonstrated an urgent need to improve eating disorder provision. What more are the Government doing to address those concerns and ensure that all those patients receive the quality of care that they deserve?

I also want to touch on some of the points mentioned by my right hon. Friend the Member for Hayes and Harlington, my hon. Friend the Member for Sheffield, Hallam, and the hon. Member for Bath. They mentioned the lack of monitoring of the effectiveness of treatment being provided. Is the Minister aware that the Royal College of Psychiatrists has published guidance for healthcare professionals to support the development of specialist skills and knowledge to assess and treat people with eating disorders? What are the Government doing to ensure that that guidance is embedded in primary care and emergency departments? The Opposition recognise that, when it comes to eating disorders and all mental health issues, prevention is so important, and early prevention provides the best chance of recovery. Too many people, especially our children and young people, are stuck on mental health waiting lists for months or years instead of receiving the urgent care that they need.

We face a mental health crisis in this country, and we must have a Government that acknowledge that and will take urgent action. That is why Labour have committed to a child health action plan, with a bold ambition for this to be the healthiest generation of children ever. We will recruit thousands more mental health staff to cut waiting lists and ensure that more people can access treatment. We will focus on prevention, early diagnosis, early intervention and timely treatment near where people live.

To do that, we will put an open-access mental health hub for children and young people in every community, and a mental health specialist in every school. That will be paid for by abolishing tax loopholes for private equity fund managers and tax breaks for private schools. We cannot continue to lurch from crisis to crisis, which is what is currently happening. We must look at how we can build a new, solid, long-term foundation for a resilient health and care system, with an NHS that is truly fit for the future.

15:50

[The Minister for Health and Secondary Care (Andrew Stephenson)]

It is a pleasure to see you in the Chair, Mr Hollobone. I start by paying tribute to the hon. Member for Bath (Wera Hobhouse) for securing an important debate on an important topic. I know that both as an MP and as the chair of the all-party parliamentary group she has long been a champion for those living with eating disorders. She has worked with the hon. Member for Sheffield, Hallam (Olivia Blake) and others on the APPG to ensure that eating disorders are kept high on the political agenda.

I share the passion for this issue expressed by all the hon. and right hon. Members who have spoken in this debate. As the right hon. Member for Hayes and Harlington (John McDonnell) said, one thing that unites everybody in the Chamber today is that we have all tried to help a constituent, or the family of a constituent, who is suffering from an eating disorder. I have certainly done so in my 13 years as the MP for Pendle, and those cases that I have dealt with are some of the most difficult and emotional to have come across my desk in my surgery.

Improving eating disorder services is a key priority for the Government and a vital part of our work to improve mental health services. As we have heard, this week is national Eating Disorders Awareness Week, and raising awareness is essential to making progress on this important issue. I am grateful for the work of Beat and other charities across the whole sector; they have shone a light on eating disorders and they support people who are struggling.

We know that having an eating disorder can so often be utterly devastating for those with the condition, as well as for those around them. As I think has been said by pretty much every hon. Member who spoke today, we know that eating disorders can affect people of any age, gender, ethnicity or background. However, we do know that recovery is possible, and that access to the right treatment and support can be life changing. Early intervention is vital, and we want to ensure that children and young people with eating disorders get swift access to support.

Since 2016, investment in children and young people’s eating disorder community services has risen every year; £53 million was invested per year in 2021-22, and that figure rose to £54 million in 2023-24. As part of the £500 million covid-19 mental health recovery action plan, we invested an extra £79 million to significantly expand young people’s mental health services—enabling 2,000 more children and young people to access eating disorder services. We have also introduced a waiting time standard for children and young people with eating disorders. Our aim is for 95% of children to receive treatment within one week for urgent cases, and within four weeks for routine cases.

[Abena Oppong-Asare]

On the Minister’s point about getting waiting time targets down to one week, those targets were implemented in 2015, and they are yet to be met. Could the Minister explain what work is being done to address that, because he just mentioned those same targets again?

[Andrew Stephenson]

I completely recognise the shadow Minister’s challenge on that point and the concern that she has—I will set out what we are doing to address it. She also mentioned the Royal College of Psychiatrists, which published a report on this today. It is worth putting on record that we very much welcome that and that we look forward to working with it and other stakeholders. Waits are not as short as we would like, and the Government are determined to meet our waiting-time standards for children and young people with eating disorders. Extra investment is going into the services to meet increased demands and reduce waits, so hopefully we will start to see progress made towards meeting those targets. However, we acknowledge that, while there has been record investment and progress in improving access to eating disorder services and improving quality, there has also been a significant increase in demand for those services over the past few years. That was especially true during the pandemic, with increased demand outstripping the planned growth in capacity.

Children and young people’s eating disorder services are treating 47% more children and young people than before the pandemic, with almost 12,000 children and young people starting routine or urgent treatment in 2022-23, compared with just over 8,000 in 2019-20. That surge in demand has made meeting our waiting-time targets more challenging, and waits are not as short as we would like them to be. However, I am proud that our services and clinicians, backed by new funding, are supporting more children and young people than ever before. Those services are changing and saving lives.

We also know that even earlier intervention is critical to prevent eating disorders from developing. Community-based early mental health and wellbeing support hubs for children and young people aged 11 to 25 can play a key role in providing that support. In October 2023, we announced that £4.92 million from the Treasury’s shared outcomes fund would be available to support hubs, and an evaluation to build the evidence base underpinning those services.

[Wera Hobhouse]

Can the Minister perhaps comment on what I said about intensive out-patient units, in that we really do not have any information on how widely spread they are and where they are being provided? They are a very good alternative way of treatment, and we really need more information about where they are available.

[Andrew Stephenson]

We do need more information on that, and I will come to that point. The next point that I wanted to make was on an announcement that I know the hon. Lady will already be aware of, but other hon. Members may not be. Following the evaluation of some excellent commercial tenders from hubs across the country, the Government announced just this week that we are now providing an additional £3 million, which means that total of 24 hubs will receive a share of almost £8 million in 2024-25. That is more than double our original target of funding 10 hubs, and organisations across England—from Gateshead to Truro—will now benefit.

I appreciate that there is still a bit of a postcode lottery around the country, but we are looking to strengthen services, working with different partners across England, to ensure that we are improving services—enhancing existing services—or developing new services where they have not been provided in the past.

[Abena Oppong-Asare]

I just want to add to the point made by the hon. Member for Bath (Wera Hobhouse) about hubs. What work will be done to ensure that the data is captured to see how the growing problem of eating disorders can be addressed and what effective treatments could slow the increase?

[Andrew Stephenson]

We are working very closely with NHS England and partners to ensure that that data is captured. We are also working with the charities involved in this sector and with others.

I know that the Minister with responsibility for mental health, my hon. Friend the Member for Lewes (Maria Caulfield), has been doing a lot of work on this and has met with various stakeholders. I perhaps should have said at the start of the debate that the reason my hon. Friend is not here and hon. Members have me instead is, of course, that the International Women’s Day debate in the Chamber was still going when this debate started —so, unfortunately, there was an unavoidable clash.

However, I know that this is a topic very close to my hon. Friend’s heart, and getting the data right is really important for us to ensure that the gaps that currently exist in services are being addressed. I will certainly ensure that the shadow Minister’s issue is raised with my hon. Friend; if I may, I will ask her to write to the hon. Lady on that.

We know that eating disorders can have devastating effects on adults too. Under the NHS long term plan, by 2023-24 we are investing almost £1 billion extra in community mental health care for adults with severe mental illness, including eating disorders. That extra funding will help to enhance the capacity of new or improved community eating disorder teams covering the whole of the country. As part of funding provided in 2021-22 in response to pressures created by the pandemic, we also provided £58 million to support the expansion of community mental health services for adults, including those relating to eating disorders.

Many hon. Members in their contributions raised avoidant/restrictive food intake disorder, or ARFID. I share their ambition to improve support for people living with this under-recognised condition. In 2019-20, NHS England funded seven community eating disorder teams for children and young people, one in each region of England, in a pilot programme to improve access, assessment and treatment for children presenting with ARFID. The pilots ran from September 2019 to March 2020 and included training to support the adaption of each service’s existing care pathways, assessments and treatment interventions for children and young people with ARFID. The training from those pilots is now available for local areas to commission for their community children and young people’s eating disorders services. In 2021, NHS England also commissioned ARFID training for staff delivering treatment in inpatient children and young people’s mental health services.

We recognise that more needs to be done. We know that the earlier treatment is provided, the greater the chance of recovery. NHS England continues to work with eating disorders services and local commissioners to improve access to treatment for all children and young people with a suspected eating disorder, including those presenting with ARFID.

Several hon. and right hon. Members raised the issue of BMI and the Dump the Scales campaign. NHS England continues to emphasise to systems and services that BMI should not be used as a single measure to determine access to treatment within either adult or children and young people’s eating disorders services. That is in line with NICE recommendations and is included in the national published guidance, as well as in the recent community mental health framework. NHS England is also in the process of updating the children and young person’s guidance, which will also state that BMI should not be used as a single measure.

The hon. Member for Bath asked whether we would consider appointing an eating disorder champion who could help to galvanise action and support for people living with those conditions. As she may know, the Government do not currently have plans to appoint a specific champion role, but I can assure her that the Department of Health and Social Care and NHS England already work closely with stakeholders advocating for better care, such as Beat. We are also very grateful for the work of Dr Alex George in his role as the Government’s ambassador for children and young people’s mental health, which includes championing the needs of those with eating disorders.

The right hon. Member for Hayes and Harlington raised the issue of palliative care pathways. I want to assure him and other hon. Members that people with eating disorders should not be routinely placed on palliative care pathways, including those with severe, complex or enduring eating disorders. The NHS is clear that all those with severe, complex or enduring eating disorders should have access to evidence-based treatments focused on helping people recover, including hospital-based care if appropriate. Staff involved in the care of people with complex and severe eating disorders must adhere to the legal frameworks that safeguard their best interests, and NHS England will work with patient groups and stakeholders to develop further guidance on that.

The hon. Members for Bath and for North Ayrshire and Arran (Patricia Gibson) raised the issue of suicide. It is critical that we all do all we can for those affected by eating disorders before they reach that point. That is why the Government published a suicide prevention strategy in September of last year, which aims to reduce suicide over the next five years. I want to reassure right hon. and hon. Members that people in contact with mental health services, including those with eating disorders, are a priority group for the strategy.

In closing, I extend my thanks once again to the hon. Member for Bath for securing the debate, and to all the hon. and right hon. Members here today for their thoughtful contributions and questions.

16:04

[Wera Hobhouse]

I want to thank everybody who took part in today’s debate on Eating Disorders Awareness Week. It was an opportunity for all of us to learn more about ARFID, or avoidant/restrictive food intake disorder —it has a long and difficult name, but it is a very severe condition and it is important we understand more about it, as it now affects many young people and their families. I am therefore glad that Beat chose that particular theme for this year’s Eating Disorders Awareness Week.

We have heard about the many different forms that eating disorders take. Many aspects of those different forms are still not entirely known, and that includes ARFID. We need a lot more research into the condition. Most of all, we must increase awareness of support for sufferers and caregivers, urgently increase access to services and especially provide access in a timely manner. We have heard several times that we have targets for children and young people, but they are not being met, and we certainly need targets for adult services. While we have made progress, there is still much more to do.

I want to thank Beat, the many other eating disorder charities and those working in eating disorders services for their sterling work. They are all doing amazing work. Last but not least, I want to pay tribute to the indefatigable Hope Virgo. Without her tireless campaigning, we would not be here today. However, there is still a lot to do. I know the Government are listening and I hope for and look forward to further co-operation.

Question put and agreed to.

Resolved,

That this House has considered Eating Disorders Awareness Week 2024.

16:06

Sitting adjourned.