Thanks to the efforts of our campaigners we’ve seen our campaigns have some real impact. We've seen changes to medical school curricula, national reviews of services, increased funding for children and young people’s eating disorder services and changes to how eating disorder treatment is funded locally.
Children and Young People’s Access and Waiting Time Standards in England
2016 saw the introduction of the first ever waiting times targets for NHS community-based eating disorders treatment for under 18-year-olds in England. They promised evidence-based treatment for every child and young person within four weeks for ‘routine’ cases and one week for ‘urgent cases’ after referral to specialist eating disorder treatment.
Beat had been a consistent voice in lobbying for early intervention and more investment in specialist treatment prior to 2015, and we were delighted to have our Chief Executive on the expert reference group responsible for drafting the guidelines. These changes have meant that many more children and young people in England have been able to access evidence-based treatment for their eating disorder.
We will continue to campaign for these targets to be maintained, and for services to have the staffing and funding they need to meet them fully.
The standards have helped pave the way for the introduction of pilot targets for adults in England, as well as being part of Beat’s call for the introduction of targets in Scotland and Wales.
Mental Health Implementation plan – announcement of joint budgets
Before 2019 funding for inpatient and community eating disorder treatment in England came from different budgets, making it more difficult to prioritise early intervention.
In 2019 the NHS Mental Health Implementation Plan was published, setting out how the NHS would change things at the local level to help meet their national targets.
One of the key highlights for Beat and eating disorders was that the management of inpatient eating disorder budgets moved to NHS-led groups of local service providers.
This will be rolled out across England by 2024, creating greater incentives for investment in early intervention.
Welsh government supports changes to eating disorder services
In 2017, Beat launched a campaign calling for fully funded access and waiting time targets for all ages to be introduced in Wales. This was designed to match, and go one step further than the targets in England, which require services to see under 18s within four weeks for routine referrals and one week in urgent cases, supporting our case for early intervention.
We launched a petition, and campaigners sent letters about the campaign to their Assembly Members. Hundreds of our supporters in Wales supported the campaign, and ensured that our voices on this were heard.
In 2018, the Cabinet Secretary for Health and Social Services, Vaughan Gething announced that the Government would be commissioning a review of eating disorder services in Wales. The review would look at all eating disorder services across Wales for people of all ages and cover all types of eating disorder.
In his letter announcing the review, Vaughan Gething said that he had asked that it considers whether maximum waiting times for eating disorders treatment should be introduced in Wales, specifically mentioning Beat’s campaign.
“You will be aware that the Beat charity is also currently campaigning to implement eating disorder waiting time standards in Wales, similar to those proposed for England. Assembly Members have contacted me on this issue and I have asked the review to consider the need, if any, for specific eating disorder targets.”
In 2019, the Eating Disorder Service Review was published with 22 recommendations made, including that waiting time targets for people of all ages were introduced in Wales. The Welsh Government have accepted some of these recommendations . A fantastic result for our campaigners in Wales and for all those individuals who will be able to access treatment more quickly in the future.
Our Campaigner Emily had this to say about her involvement in the review:
“My experience of living with an eating disorder has made me incredibly passionate about helping others who are struggling, and driven to play a role in improving the help and support networks available in Wales. Campaigns such as this one are so important yet easy to get involved with, and give the lay public an opportunity for their voices to be heard. It’s amazing to see that the efforts of Beat and all the campaigners involved have been worthwhile, and that these changes will now improve the future eating disorder services in Wales.”
Four years on from the review, however, progress has been uneven, and slow in places, and we’re still waiting for a plan to achieve the full vision across Wales. We're still campaigning for this vision to become a reality for everyone in Wales. Welsh Eating Disorder Service Review - 3 Years On
Eating Disorder Service Review in Scotland
In 2017, Beat launched a campaign calling for fully funded access and waiting time targets for all ages to be introduced in Scotland. This was designed to match, and go one step further than the targets in England, which require services to see under 18s within four weeks for routine referrals and one week in urgent cases, supporting our case for early intervention.
We launched a petition, and supporters sent letters about the campaign to their Members of Scottish Parliament. Hundreds of our campaigners in Scotland supported the campaign, and worked hard to get our voices on this heard.
With the eating disorder service review in Wales providing many valuable recommendations and a springboard to the introduction of access and waiting time targets, in May 2019 we began specifically calling for the Scottish Government to complete a similar review in Scotland. In March 2020, the Scottish Government announced an eating disorder service review, with recommendations published June 2021.
Work is ongoing to make the vision of the review a reality across Scotland.
Huge strides forward for adult treatment in England
Since 2017 we have been calling for the Access and Waiting Time Standards for Children and Young People to be replicated for adults. Beat campaigners did phenomenal work to put the need for fast access to specialist treatment in the spotlight and in 2019 a few new announcements showed that our voices were being heard.
NHS England announced trials in selected local areas of four-week waiting times for adult and older adult community mental health services, including for adult eating disorder services - one step closer to shorter waiting times for all.
The NHS Mental Health Implementation Plan 2019/20 – 2023/24 (for England) said that across the next five years we’ll see significant extra investment in adult community mental health services (including adult eating disorder services).
For the first time, NHS England published guidance about what people with eating disorders and those supporting them should be able to expect from adult eating disorder services. This is a vital tool to help campaigners hold the Government and the NHS to account going forward.
We continue to campaign on this. End the Wait
We believe that Government-backed public health measures should do no harm to people vulnerable to or currently living with an eating disorder. In June 2020 the UK Government launched a new ‘obesity strategy’ which contained several concerning proposals, including a weight loss app and mandatory calorie labelling on menus.
Better health app
Beat raised concerns with Public Health England that whilst the app informed people under 18 and people living with a low BMI that it was not suitable for them, it went no further in blocking their access, which we felt was insufficient. We were pleased that Public Health England introduced new safeguarding measures which removed the option for people with a low BMI to access the weight loss app and have introduced clear guidance to under 18s that “this product is only suitable for adults.”
We are continuing to call for a wider review of the app to ensure that it does not pose risks to anyone affected by an eating disorder, including people living with obesity and an eating disorder.
Calorie labelling on menus
We know that calorie information on menus can be harmful to those affected by eating disorders, and our supporters told us how much this concerned them. We fought hard against legislation making this labelling mandatory in all cafes and restaurants over 250 employees in England. Thousands of supporters sent letters to Members of Parliament to raise the issue, and we managed to reach nearly every MP. Though the legislation passed, we were successful in ensuring that calorie free menus can be made available, and that the legislation is not mandatory in schools.
We continue to seek opportunities to challenge this legislation in England and are campaigning in Wales, Scotland and Northern Ireland to stop this legislation from passing.
In recognition of this issue, and the lack of research around the impact of this legislation, in 2022 the National Institute for Health and Care Research (NIHR) put out a funding call to ensure that there is more research to help us to understand the impact more fully.
All Party Parliamentary Group (APPG) – UK Parliament
The All Party Parliamentary group on eating disorders was formed in 2019, with ongoing support provided by Beat. Since the group began it has been bringing together MPs from across UK Parliament to improve policy, in particular improving access and treatment for people affected by eating disorders and measures that support prevention and early intervention. In 2021 we collaborated with the APPG to carry out an inquiry into research funding in the UK, which resulted in a significant new investment in research (see below).
Cross Party Group on Eating Disorders – The Senedd
Beat took over providing the ongoing support for the group in 2019. The group was created to encourage co-operation between all parties on issues relating to eating disorders in Wales. Seeking to raise and maintain the profile of eating disorders within the Senedd, influence the Government to ensure that parity of esteem is given to eating disorders and strengthen links between Members of Senedd (MSs) and service users, carers, health professionals, medical schools, research funding bodies and third sector organisations. The group also discusses and takes action in response to policy and legislation that could impact on people with experience of eating disorders.
In December 2017 the Parliamentary and Health Service Ombudsmen (PHSO) published their report ‘Ignoring the Alarms: How NHS eating disorder services are failing patients’. The investigation found multiple failings in patient care, and concluded that there were serious issues that required national attention. The PHSO gave five recommendations for improvement, including highlighting the need for improvements in the training of doctors and other medical professionals about eating disorders.
18 months on from the publication of the ‘Ignoring the Alarms’ report, the Public Administration and Constitutional Affairs Committee (PACAC) who oversee the PHSO, felt that the ‘Ignoring the Alarms’ report raised issues of wider concern so launched an inquiry to highlight the report’s findings and investigate what progress had been made in implementing the PHSO’s recommendations. As a result of this inquiry, Beat have collaborated with Health Education England and the Royal College of Psychiatrists to create an education package that we can provide for free to all medical schools and foundation training programmes, to ensure that every new doctor has basic levels of knowledge and skills in the identification and safe management of patients with eating disorders.
Back in early 2019, before the PACAC inquiry, Beat Campaigner Emily was also successful in her lobbying of UCL medical school to increase its eating disorders teaching, with them now running an hour-long specialist lecture on eating disorders that is repeated throughout the academic year, and available online, to maximise the number of students able to access the content. She said of her success:
"I can’t tell you how much this win means to me. Knowing that my work will lead to more trained doctors, and therefore more early diagnoses, is a point of immense personal satisfaction – and makes me even more motivated to tackle the next medical school on my list!"
In 2021, Beat supported the All-Party Parliamentary Group (APPG) on Eating Disorders to carry out an inquiry into research funding in the UK. Evidence was received from funders, academics, clinicians, professional bodies, charities and campaigners with lived experience.
The inquiry found that eating disorder research receives very little funding and that there are serious inequities within eating disorder research, with certain groups often overlooked.
Research is crucial as there is an urgent need to improve our understanding around what causes eating disorders, how best to treat them and how to prevent them developing. Without this, eating disorders will continue to cause pain and suffering to the lives of millions.
In 2022, recognising the need to do more to support eating disorder research, the Medical Research Council (MRC) brought together several funders and academics, along with Beat to discuss the best ways to support eating disorder research in the UK.
As a result, a group of research funders, led by the Medical Research Council (MRC), announced a significant new investment of over £4m to help the field grow by strengthening collaboration between researchers — including with those that usually focus on other conditions.
This is a fantastic result, and one that we hope will be the start of a long term increase in funding in this area.
The steps we’ve seen over the last few years are promising, but we need your help to make sure that all the guidance, plans, and reports are more than just words, and create real change for people with eating disorders, of all ages and across the UK. Let us know if you'd like to get more involved in our campaigning.