The Changes We Are Campaigning For

Eating disorders are appropriately taught and assessed at all medical schools and all junior doctors gain clinical experience during their Foundation training.

Doctors of the future must have a good understanding of eating disorders so they can help patients access treatment at the earliest opportunity and manage their care safely. All trainee doctors should leave medical school with basic levels of knowledge and skills in the identification, safe management and referral of patients with eating disorders. All junior doctors should gain clinical experience in eating disorders through their Foundation training.

Improved teaching, assessment and clinical experience in eating disorders during medical training would also be likely to increase the number of trainees choosing to specialise in eating disorders.

The Parliamentary and Health Service Ombudsman’s (PHSO) 2017 report found that low levels of knowledge among doctors and other health professionals was among several failings that led to the death of 19-year-old Averil Hart and two others and that there is not enough training for tomorrow’s doctors on eating disorders.

On average, under two hours is spent on teaching about eating disorders in UK medical schools, with one in five medical schools providing no teaching at all. Some provide only theoretical teaching, and no clinical skills training. Many medical schools do not include a question about eating disorders in their final exams. Overall, the data suggests that education and training on eating disorders is a low priority at many UK medical schools.

A 2017 Beat survey of over 1,100 people found that three out of ten did not receive a referral to a mental health service from the first GP they sought help from, despite clinical guidance that stresses the importance of immediate referral. Only 45% felt that their GP emphasised the importance of accessing treatment as soon as possible and when asked to rate the quality of care they received from this GP 48% rated it either ‘good’ or ‘very good’, with 52% rating it ‘poor’ or ‘very poor’.

Academic research suggests that most non-specialist doctors lack confidence and knowledge in how to help patients with eating disorders and that this leads to delays in treatment and inappropriate management.

The severe impacts of eating disorders on physical health mean that they are relevant to a wide range of medical specialisms. However, opportunities to learn about their treatment in greater depth through specialist clinical placements are extremely limited. Only around half of UK junior doctors have a psychiatry placement during their Foundation training, and not all of these include exposure to patients with eating disorders.

You can find out more and get involved with this campaign here.

Significant increase in funding for research into eating disorders

While some high quality research is underway and effective therapies have been developed, we still don’t have a full understanding of what causes eating disorders or how best to treat them. This is not surprising considering the way that research funding is allocated in the UK.

The UK and devolved Governments are a major funder of health research and have significant influence over other research funders. All four Governments have committed to ensuring that mental health conditions are treated with the same level of importance as physical health conditions. This principle must be applied to the allocation of research funding. A significant increase in the funding provided for eating disorder research is required to reflect the number of people affected and the severity of these conditions.

Analysis by the mental health research charity MQ found that UK-based funders spend just £9 per person affected on mental health research per year, and just 96p per person affected on eating disorder research. We can see the major breakthroughs in diagnosis and treatment that increased funding has brought about with other illnesses – with spending on vital cancer research having risen to around £228 each year per person affected, survival rates have doubled in the last forty years.

Those living with, or vulnerable to, eating disorders are protected from harmful pro-eating disorder content online. 

Algorithms are targeting those with eating disorders with content and advertisements that encourage harmful behaviours and impact their recovery. Online platforms are being allowed to profit from such content.

The UK Parliament is currently developing an Online Safety Bill – a new set of regulations that aim to make the UK a safer place to be online. The Bill seeks to introduce new rules for firms which host images, videos and comments generated by users, such as social media sites, message boards, forums, video sharing sites and search engines. They will have legal duties to minimise harmful content presented to users. Platforms which fail to protect people could face fines or even be blocked.

In 2022 we surveyed people with lived experience of eating disorders to understand more about their experiences online. The results were concerning: 91% of people with lived experience of having an eating disorder had encountered content which was harmful in the context of their eating disorder. Those surveyed described being ‘bombarded’ with triggering content, imagery and advertisements which could ‘fuel’ eating disorder thoughts and behaviours.

That’s why we want to ensure that content and issues specific to eating disorders are fully considered and incorporated into the bill. We have written a briefing and shared with MPs and Lords. The briefing outlines our concerns and presents the evidence we have collated on the impact the online world can have on those with eating disorders and their loved ones.

As the Bill moves through Parliament, we are working closely with MPs and Peers to ensure that our concerns are raised, and the experiences of those with eating disorders are considered.

You can find out more about the bill and what we’re calling for here.

Ensuring that UK and devolved Governments’ legislation and campaigns to address obesity do not pose risks to people with eating disorders

In June 2020, the UK Government announced their plans for a range of measures to encourage weight loss. In March 2021, further measures were announced, including an incentive and reward approach to encourage healthy behaviours and the introduction of calorie labelling in restaurants, cafes and takeaways with more than 250 employees. Despite campaigning tirelessly to stop calories on menus being introduced, the legislation came into effect in April 2022 in England.

In Scotland, we have had positive conversations with Public Health Scotland and are working with them on a weight stigma training resource. We have also been working with the Scottish Government to ensure that the voices of our beneficiaries in Scotland are heard. In May 2023, the Scottish Government announced that the decision on whether to introduce mandatory calorie labelling on menus would be paused until further evidence has been gathered on the impact of the proposed legislation.

In Wales, our campaigning includes working to  ensure that any public health campaigns emerging from the Healthy Weight Healthy Wales 10 year anti-obesity strategy use appropriate messaging. We are also working with the Welsh Assembly and Public Health Wales amplify the voices of people with lived experience of eating disorders in Wales. In June 2023, the Welsh Government also announced that the decision on whether to enforce calories on menus in Wales would be paused until further evidence is gathered, including how the proposed legislation could harm people with eating disorders.

More broadly, previous Government campaigns been ineffective in reducing obesity and have also increased stigma and put those vulnerable to developing an eating disorder or those currently experiencing an eating disorder at risk. It is vital that the public are not shamed about their weight. This approach oversimplifies obesity, reducing people’s weight to a matter of individual choice and ignoring the many complex factors involved, which may include eating disorders. Beat calls on all Governments to ensure that campaigns and legislation take a holistic approach, rather than stigmatising weight, viewing obesity as a choice or encouraging restrictive eating patterns. We are continuing to campaign to ensure that public health campaigns addressing obesity are informed by eating disorder experts and by experience to ensure that messaging and legislation doesn’t cause distress to people at risk of developing an eating disorder or exacerbate eating disorder behaviours in those already diagnosed.

In England there is an urgent need for major improvement in access to evidence-based treatment for adults, and achievement of national standards for children and young people’s eating disorder services in every area. We are also calling for all medical students and junior doctors to have proper training on eating disorders, and campaigning for eating disorder research to be properly funded. The Government's campaigns to address obesity are a source of concern for the wellbeing of those vulnerable to or currently experiencing an eating disorder, we are urging the Government to reconsider their approach.

Introduction of a fully funded ‘Access and Waiting Time Standard for Adults with an Eating Disorder’

Right now, there are no national waiting time targets for adults who need eating disorder treatment.

Adults with eating disorders face a postcode lottery in trying to access specialist treatment. In some areas, access to treatment is restricted on the basis of Body Mass Index (BMI) or other single measures, contradicting the clinical guidance published by NICE. Some adult eating disorder services do not offer treatment for patients with Binge Eating Disorder, despite it being a serious illness that many people suffer from. Only 26% of adult patients started treatment at a specialist service within four weeks in 2017/2018. On average patients waited nine weeks, although this varied widely, with an average wait at one service provider of five-and-a-half months.

Access to specialist treatment for children and adolescents has significantly improved since 2016. However, under the current mental health system, many of these patients must transfer to an adult service when they reach 18. The limited capacity of adult services can mean that these patients face long delays or are denied treatment altogether. This risks losing progress made in their recovery.

Some areas do not have a specialist eating disorder service for adults. In 2016/2017, 2,682 people over 19 (in England) were referred to non-specialist mental health services for eating disorder treatment. These services often do not have the capacity and expertise to assess and treat eating disorders.

The Parliamentary and Health Service Ombudsman (PHSO) – the final arbiter of NHS complaints in England – has expressed alarm at failures to coordinate care and the postcode lottery adults with eating disorders face when trying to access quality treatment. The PHSO has shown that these problems lead to lives being lost and that achieving parity with services for children and young people is essential in order to prevent further tragedies.

Achievement of the Access and Waiting Time Standard for Children and Young People with an Eating Disorder, in every area.

An access and waiting time standard for children and young people was published in 2015, with implementation beginning the following year. For the first time, this set clear expectations around the maximum time children and young people should be waiting to access to evidence-based treatment – one week in urgent cases or four weeks in all other cases. Crucially the Government and NHS England are continuing to provide significant additional funding. This has led to a major improvement in service provision for children and young people. However, some areas of the country are being left behind.

There are major differences in waiting times both between and within regions. In 2018/2019 92% of non-urgent (‘routine’) referrals in the London NHS region started treatment within the target of four weeks, in contrast to 75% in the South East. At the more local level, the most recent 12 months of data available (up to end of Quarter 3 2019/2020) shows that some Clinical Commissioning Group (CCG) areas have a lot of work to do to begin meeting the targets. Among CCGs that had over 15 urgent referrals, 100% of those referred began treatment within the target time at best, while just 22% began within the target time at worst. Among CCGs with over 40 routine referrals, the number who began treatment within the four-week target ranged from 47% – 100%.

NHS England has stated that children and young people in every area should be able to self-refer to specialist treatment by 2020/2021, as a key step to improving access to treatment. Despite this approaching deadline, few services are advertising the option of self-referral on their website.

For each of the last three years NHS England has allocated significant additional funding for the treatment of children and young people with an eating disorder to CCGs. However, there are concerns about the level of funding reaching frontline services, and the ability of these services to recruit and retain the staff they need, as the number of referrals continues to rise. In 2018/2019 spending varied widely between areas. Two CCGs spent just 17p per person on community eating disorder services for children and young people, whereas one CCG spent £5.55 per person. In 2018/2019, 28% of CCGs spent less on these services than they had planned to at the start of the year, and some spent less than half. One CCG planned to spend £455.000 but only spent £137,000, while another planned to spend £275,000 but actually spent £137,000.

In Wales we are campaigning for full implementation of the recommendations made by the Government-commissioned Eating Disorder Service Review 2018. Campaigning will be crucial to securing enough funding, staff and training to realise the review’s ambition of world-class treatment and support across the whole of Wales. We are calling for all Wales-based medical students and junior doctors to be properly trained on eating disorders and campaigning for eating disorder research to be properly funded.

Full implementation of the Welsh Eating Disorder Service Review’s recommendations

The Welsh Government commissioned the Welsh Eating Disorder Service Review in 2018, led by Dr Jacinta Tan (Consultant Child and Adolescent Psychiatrist at Aneurin Bevan University Health Board) and developed through close collaboration with experts by experience.

It found that the current system in Wales is based on reacting to patients who are already severely ill, rather than intervening early, and that there is a postcode lottery in the level and quality of treatment.

It made a series of ambitious recommendations for improvement, prioritising early detection of eating disorders, rapid access to treatment, and equitable provision of evidence-based treatment nationwide. Its recommendations include the introduction of a waiting time targets for patients of all ages, which with the right safeguards and monitoring would make a huge difference to people with eating disorders across Wales. It also recommends that patients and their carers are fully involved in the development of services, and that families and other carers receive the information and support they need.

The Welsh Government has published the Executive summary of the review and asked health boards to begin implementing its recommendations. However, there are questions as to whether sufficient funding, workforce and staff training will be provided to realise the review’s ambition of world-class treatment and support across the whole of Wales.

Access to Tier 3 specialist eating disorder services in Wales varies widely between areas. At 31 March 2018, after accounting for differences in population sizes, there was a two-fold difference between the health board with the biggest caseload (number of patients) and the health board with the smallest. At 31 March 2018 the health board with the most staff had three times more than the lowest after accounting for differences in population sizes. In proportion to the number of patients treated, the service with the most staff had four times more than the lowest.

People with eating disorders often face barriers to securing a referral to treatment. The review recommended that services should accept referrals from all sources, including self-referral. In 2018, none of the seven health boards reported accepting self-referral at their Child and Adolescent Mental Health Service (CAMHS).

In most areas, if a patient needs more intensive support than outpatient care, but they do not meet the threshold to access inpatient treatment, then there is nothing available. A Beat Freedom of Information (FOI) request found that only one health board in Wales provides suitably intensive day- or home-based treatment.

Families and carers are often key to recovery. However, the service review confirmed that in Wales they often do not receive the information and support they need.

Ensuring that Government campaigns to address obesity do not pose risks to people with eating disorders

We are campaigning to ensure that public health campaigns tackling obesity in Wales are informed by eating disorder experts and by experience to ensure that messaging doesn’t cause distress to people at risk of developing an eating disorder or exacerbate eating disorder behaviours in those already diagnosed.

Our campaigning is including working to ensure that any public health campaigns emerging from the Healthy Weight Healthy Wales 10 year anti-obesity strategy use appropriate messaging. We are also working with the Welsh Assembly and Public Health Wales to ensure the voices of our beneficiaries in Wales don’t go unheard.

In Northern Ireland, we are campaigning for full implementation of the recommendations made by the 2015 RQIA Review of Eating Disorder Services. We are calling for all Northern Ireland-based medical students and junior doctors to be properly trained on eating disorders and campaigning for eating disorder research to be properly funded.

Full implementation of the Regulation and Quality Improvement Authority (RQIA) 2015 ‘Review of Eating Disorder Services in Northern Ireland’ recommendations, enabled by sufficient funding, workforce and staff training

In the years leading up to the collapse of the Northern Irish Executive, there was significant progress in reviewing eating disorder service provision, and a care pathway was published setting out what should be provided for patients. In the absence of a working Government that progress stalled.

The new power-sharing Government must make it a priority to act on the recommendations made by the RQIA’s ‘Review of Eating Disorder Services in Northern Ireland’. Implementation of these recommendations will be critical to ensuring that patients can benefit from early intervention and access to evidence-based treatment as close to home as possible, and that families and friends get the information and support they need.

Often opportunities to identify and refer people with eating disorders are missed at the primary care level in Northern Ireland, and physical health monitoring including the completion and analysis of blood tests is not carried out, posing serious risks to the safety of patients. Some GPs who do carry out blood tests are unable to access advice to help them understand the results.

Due to insufficient funding, the capacity of adult eating disorder services and specialist provision within Child and Adolescent Mental Health Services (CAMHS) is extremely limited. In some areas patients must travel long distances to attend appointments. Most adult patients are treated within their local Community Mental Health Teams (CMHTs), with treatment from a specialist service usually reserved for severely ill patients. The number of eating disorder specialists varies significantly between Health and Social Care (HSC) Trusts, along with the mix of professional backgrounds and skills. None of the adult eating disorder services employ a Clinical Psychologist, and the numbers of Occupational Therapy and Social work staff in eating disorders are very low.

Patients are often unable to access the full range of evidence-based psychological therapies.

In most areas, if a patient needs more intensive support than outpatient care, but they do not meet the threshold to access inpatient treatment, then there is nothing available. A Beat Freedom of Information (FOI) request found that none of the Health and Social Care (HSC) Trusts in Northern Ireland provide a suitably intensive day- or home-based treatment.

Information and advice about sources of support is not consistently provided to families and friends.

You can find out more about our current work on this here.

In Scotland, we are campaigning to ensure that the forthcoming national review of eating disorder services is based on the experiences of people affected by eating disorders and clinical experts, and for the review to produce a series of recommendations that can lead to real change. We are also calling for all Scotland-based medical students and junior doctors to have proper training on eating disorders, and campaigning for eating disorder research to be properly funded.

The national review into treatment and support for eating disorders is guided by the expertise of people with lived experience and clinicians

During Eating Disorders Awareness Week (EDAW) 2020, the Scottish Government announced that it would commission a review of eating disorder services across Scotland. Beat and others have long called for this as an important first step towards ensuring that everyone in Scotland, wherever they live, is able to access timely, safe and effective treatment.

The Scottish ten-year Mental Health Strategy commits the Government and NHS to delivering on the principle of ‘ask once, get help fast’. Yet this is far from a reality for many people in Scotland with an eating disorder. A 2017 Beat survey of 125 people who lived in Scotland when they were first referred to eating disorder treatment, found a mean average wait of seven months from seeking help from their GP to starting treatment. In 2017/2018 the median (average) waiting time from referral to starting treatment at a specialist adult eating disorder service in one health board was 37 weeks, and 14 weeks in another health board.

People with eating disorders often face barriers to securing a referral to treatment and in such cases the option of self-referral can be crucial. In a Freedom of Information (FOI) request submitted by Beat in 2018, only one of the seventeen Child and Adolescent Mental Health Services (CAMHS) in Scotland that responded reported accepting self-referral.

In some areas, if a patient needs more intensive support than outpatient care, but they do not meet the threshold to access inpatient treatment, then there is nothing available. A Beat FOI found that three of the eleven mainland health boards in Scotland do not provide suitably intensive day- or home-based treatment.

There is wide variation between health boards in staffing levels at adult eating disorder services. At 31 March 2018, the health board with the most staff had three times more than the lowest, after accounting for population sizes. The psychology workforce in adult eating disorders in Scotland was lower at 31 December 2018 than it was at 31 December 2013. Some adult eating disorder services have no psychology input at all. According to the Royal College of Psychiatrists in Scotland there is also wide variation in terms of staff training.