My campaigning work was born out of wanting to fight the injustices that so many people affected by eating disorders go through.

Having lived with anorexia from the age of 12-17 before being admitted to a mental health hospital where I began my journey to recovery, I know first-hand just how awful eating disorders are. I have spent huge amounts of life feeling frustrated by how many people get turned away from services for not having that “particular stereotypical look” and with how much neglect is taking place in treatment across the UK. 

Patient safety concerns

Often people still think someone with an eating disorder will be underweight or have been labelled with anorexia. Eating disorders are so much more than that. During my campaign work and the APPG evidence sessions, I’ve met hundreds of people who have been denied treatment for not looking that way.

We have spoken to parents who have children with avoidant restrictive food intake disorder (ARFID), who have not been able to access treatment and support. The reality is, there is a postcode lottery and a lot of children and their families aren’t being given the best chance of life. 

Many carers also tell me how often their concerns are dismissed as silly worries. This cultural dismissiveness across eating disorder services and the lack of training and funding, is leading  to huge issues for patient safety. It is causing people to die.

It can feel so hard to speak up when support is so limited, but as a parent or carer, learning to push for support is crucial. I’d also recommend looking at the amazing resources for carers produced by the organisation FEAST.

Stigma, misunderstanding and dangerous narratives

Eating disorders are an illness that is massively stigmatised and misunderstood.

Contrary to many assumptions, people with an eating disorder:

• are not making a lifestyle choice
• are not being difficult 
• are not all white females.

Eating disorders can impact people of any age, size, gender or race.

Stigma and misunderstanding leads to so many people being denied treatment for an eating disorder. 

Marked as ‘untreatable’

One narrative that we have seen in the last two years is an increasing amount of people with eating disorders being marked as untreatable, too complex and in some cases as terminal and moved to palliative care. This dangerous narrative is causing many people to be discharged from services too soon and given inadequate care. If they are discharged prematurely and still have a malnourished brain they are not being given the chance for it to fully rewire - leading them at high risk of relapse.

Time for change

For too long eating disorders have been stigmatised and underfunded, with very little specific staff training. For children’s services, whilst there has been some investment, it has been very limited. 

Five key changes to support patient safety

The APPG published a report in January 2025 calling on the government for five key things:

1. Develop a national strategy for eating disorders.
2. Provide additional funding for eating disorder services. This funding should address the demand for both adult and children’s services.
3. Launch a confidential inquiry into all eating disorder deaths.
4. Increase research funding for eating disorders: The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders.
5. Ensure non-executive director oversight for adult and children's eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK.

Recovery

When you have an eating disorder, it completely consumes you. It takes over every area of your life. And it consumes your family life too. The research shows that people can and do recover at any age, severity of illness or length of illness. So why are we allowing so many to remain stuck living with an eating disorder and denying them the care they need?

Over the last few years. we have seen pockets of good practice in services from the development of integrated enhanced cognitive behavioural (I-CBTE) therapy, to areas where GPs have quickly referred patients or supported families to recover. With the right support and treatment in place for people with eating disorders we will not only save lives but also money. Through early intervention we can prevent hospital admissions and prevent begin becoming more malnourished thus leading to quicker recovery times.

Final thoughts

Eating disorders are a serious mental health issue. They have the highest mortality rate of any other psychiatric illness yet are often hidden in plain sight. It doesn’t have to be this way. People with eating disorders can and do make full recoveries, we just need to do better to enable this to happen.

This growing epidemic can only be reversed by investing into prevention, early intervention, and timely, high-quality treatment. Access to services needs to be free from discriminating criteria and bias. The current inpatient treatment approach results in poor outcomes and 40-50 percent relapse rates.

Without a cultural shift and a complete reformation of services nothing is going to change. Campaigners, clinicians and others need to work together to make this change happen.

March with us

On 21 June, 2025, we’ll be taking to the streets of London for the third consecutive year to march for those we love, for those we have lost, and for the future generations affected by eating disorders. This march is not just a walk — it’s a statement to demand better services and put an end to the neglect faced by those struggling with eating disorders across the UK. Find out how you can join.

Compared to last year, there have been some areas of progress: fewer children’s referrals are being closed before treatment, and investment in CYPMHS has increased in real terms and when adjusted for inflation. However, figures continue to highlight some concerning trends:

• Many children were still experiencing long waits to access mental health services, and the number of children with active referrals who were still waiting for treatment to begin at the end of the year has increased by almost 50,000 children from 270,300 in 2022-23 to 320,000 in 2023- 24.
• Almost half of those referred for being ‘in crisis’ have their referrals closed or were still waiting for their second contact at the end of the year.
• There has been an uptick in children being referred for suspected and diagnosed neurodevelopmental conditions; these conditions are associated with some of the longest waits.
• The accessibility of mental health services in England continues to vary widely from one ICB area to another, leading to a postcode lottery in children’s access to suitable support for their mental health conditions.

The Office of the Children's Commissioner promotes the rights, views and interests of children in policies or decisions affecting their lives. They particularly represent children who are vulnerable or who find it hard to make their views known. The Office of the Children's Commissioner is an executive non-departmental public body, sponsored by the Department for Education.

Report findings

This report outlines its main findings in understanding children’s access to mental health services in England in financial year 2021-22 as follows:

• Of the 1.4 million children estimated to have a mental health disorder, less than half (48%) received at least 1 contact with Children and young people’s mental health services (CYPMHS) and 34% received at least 2 contacts with CYPMHS.
• The percentage of children who had their referrals closed before treatment has increased for the first time in years. In 2021-22, 32% of children who were referred did not receive treatment compared to lower numbers in 2020-21 (24%), 2019-20 (27%) and 2018-19 (36%). There remains wide variation across the country in how many children’s referrals were closed without treatment, from as low as 5% of referrals in NHS East Sussex to 50% in NHS North Cumbria.
• The average waiting time between a child being referred to CYPMHS and starting treatment increased from 32 days in 2020-21 to 40 days in 2021-22. The average waiting time for children to enter treatment (defined as having two contacts with CYPMHS) varies widely by CCG from as quick as 13 days in NHS Leicester City to as long as 80 days in NHS Sunderland.
• Spending on children’s mental health services has increased every year, after adjusting for inflation, since 2017-18. CCGs spent £927 million on CYPMHS in 2021-22, equal to 1% of the total budget allocated to them. This compares to £869 million in 2020-21 – an increase of 7% in real terms. The share of CCGs spending over 1% of their total budget increased from 30% in 2020- 21 to 45% in 2021-22.
• The number of children admitted to inpatient mental health wards continues to fall, as does the number of detentions of children under the Mental Health Act each year. Of the 869 detentions of children under the Mental Health Act in 2021-22, 71% were of girls
• An increasing number of children, many of whom have mental health difficulties but are not admitted to hospital, are being deprived of their liberty in other settings. These children are hidden from view as they do not appear in any official statistics, but research suggests that over ten times as many children are being deprived of liberty in this way in 2023 as in 2017-18.
• Children in inpatient mental health settings who we spoke to wanted more, earlier intervention to prevent crisis admissions – sometimes children are presenting multiple times at A&E before an inpatient admission is considered.
• Much more can be done to make inpatient mental health wards feel safe and familial. Children reported a huge variation in the quality of relationships they had with staff. For example, while some children felt they knew staff genuinely cared about them, one child described how staff would only refer to children by their initials, rather than their name. There appears to be a particularly acute issue with the quality of night staff.
• Education was viewed very positively by most of the children spoken to for this report, and highlights the importance of high-quality education in these settings for children’s recovery as well as their learning.
• The data collected on children in inpatient settings, including demographic information and information about key safeguards for children, is patchy and makes it harder to improve quality.

1. One in four teenagers aged 17-19 have a mental health difficulty, an increase from one in six in 2021.
2. Poverty continues to have a strong link to young people’s poor mental health.
3. Reversed patterns of probable mental health difficulty for boys/young men and girls/young women highlights the need for specific gender-specific approaches.
4. Young people with a mental health difficulty are more likely to have negative experience of social media.
5. Young people with a mental health difficulty are more likely to miss school and feel unsafe while at school.

• Report commissioned by Look Ahead Care and Support finds increasing demand for children and young people’s crisis mental health services amidst challenges with existing services.
• Yet researchers heard from professionals, service users and their families and carers found that you “had to have attempted suicide multiple times to be offered inpatient support".
• Interviewees say A&E departments have become an ‘accidental hub’ for children and young people experiencing crisis but are ill equipped to offer the treatment required.  
• Private sector providers now deliver the majority of support for hospitalised young people with mental health difficulties at “exceptionally high” cost.  
• Report recommends alternative community crisis services, including supported housing away from hospital settings to reduce pressure on A&E and reduce costs by more than 50%  

• What is infant mental health?
• Why does infant mental health matter?
• What are specialised parent-infant relationships teams?
• What infant mental health provision exists in the UK?
• Who needs infant mental health support?
• What impact has COVID-19 had on infant mental health?

• Nationally, spending on specialist NHS mental health services for children has increased for the fourth consecutive year across the majority of CCGs.
• Half of CCGs spend at least 1% of their budget on CYPMHS.
• The number of children referred (for example by their GP or teacher) to NHS children’s mental health services has decreased for the first time in four years. In 2020/21, 497,502 children were referred, a decrease from 539,000 the previous year. This could be due to disruption caused by the pandemic. The percentage of children being referred nationally has also decreased. Referral rates have dropped from 4.5% to 4% of the under-18 population.
• More children have been struggling with their mental health since 2017 – which covers the pandemic period. One in six children have a probable mental health disorder. This is up from one in nine children with a probable mental health disorder in 2017. While progress has been made to reduce the treatment gap between those who need treatment and what is provided, this increase in need has made this more challenging.
• Overall, progress has been made across all indicators: on waiting times and a reduction in the number of children and the number of children able to access treatment.
• For those children who are accepted into mental health treatment services, average waiting times have decreased substantially from last year. The waiting times have decreased from 43 days in 2019/20 to 32 days in 2020/21.
• However, over a third (37%) of children accepted onto waiting lists are still waiting for their treatment to begin. 

The Report notes that half of mental health conditions become established before the age of 14, while data from NHS Digital showed that in 2020 potentially one in six young people had a diagnosable mental health disorder up from one in nine three years earlier, placing a huge additional strain on already stretched children and young people's mental health services.

New Mental Health Support Teams in schools offered a valuable opportunity to identify those beginning to experience problems with their mental health. However MPs note there was no funding to roll them out nationally in the recent Spending Review settlement and that current plans lack ambition.

The Report also found that too many children and young people were placed in inpatient units far from home, without adequate understanding of their rights, and subject to restrictive interventions.

1. The Secretary of State for Health and Social Care should make sure there is joint action across government to make children and young people’s mental health a national priority, working with ministers in health, social care, education, housing and local government
2. Local organisations must work together to deliver a clear ‘local offer’ of the care and support available to children and young people
3. Government, employers and schools should make sure that everyone that works, volunteers or cares for children and young people are trained to encourage good mental health and offer basic mental health support
4. Ofsted should look at what schools are doing to support children and young people’s mental health when they inspect

The CQC have followed up what action has been taken at a local level in response to their recommendations.

They found that the recommendations from the 2018 report were being implemented to varying degrees. For example, while there was stronger prevalence of joint commissioning, almost one in five local health and wellbeing boards reported back that there was no joint commissioning of support for teenagers and young people as they moved to adult services.

The report concludes that continued improvements are needed to make sure the CQC's local recommendations are being acted on.