Eating Disorders Awareness Week

Wera Hobhouse Excerpts

Thursday 29th February 2024 Westminster Hall

[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.

[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.

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.