Eating Disorders Awareness Week

Philip Hollobone 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.

--- Later in debate ---

[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.