“I felt I needed to be good enough at my eating disorder to get help”: London’s eating disorder treatment services struggling to cope with sharp increase in referrals.
The London Assembly Health Committee is calling on the Mayor of London to advocate for improvements in the provision of the capital’s eating disorder treatment services, amid concerns that services are struggling to cope with demand, and reportedly going against clinical guidance by solely using body mass index (BMI) to determine who should and shouldn’t get treatment.
The London Assembly Health Committee report “Eating Disorders in London”, published today, finds extensive work is needed to provide consistent access to the best care possible for all Londoners. The Committee notes excellent care is available in parts of London, but that this is not consistent across NHS Trusts. Eating disorders have a devastating impact on families and, for some people on waiting lists, there is little or no support provided.
Key findings
Referrals to specialist eating disorder services in London have increased significantly amongst both children and adults in recent years.
Adults
Freedom of Information (FOI) data obtained by the Committee from London mental health trusts showed a 56 per cent increase in adult referrals between 2016-17 and 2022-23. The Committee’s analysis found that, in 2022-23, 61 per cent of adults started treatment within in four weeks or less compared to 43 per cent in 2019/20.
The Committee’s analysis of information, provided by Trusts and published by the NHS, found that in 2022-23, 18 per cent of adults waited 12 weeks or more. A number of Trusts provided information which showed the longest waiting for an adult patient was over a year for treatment, including one Trust that reported their longest waiting time for treatment in 2022/23 as 1,216 days.
Children and adolescents
FOI data obtained from London mental health trusts showed there was a 158 per cent increase in child and adolescent referrals between 2016-17 and 2022-23. Data from NHS England shows that, when analysed across quarters, in 2021-22 64 per cent of urgent child and adolescent referrals started treatment within one week against a target of 95 per cent. For routine referrals 65 per cent of referrals started treatment within four weeks against a target of 95 per cent. This represents a fall from 2019-20 when these figures were 96 per cent and 91 per cent respectively.
A Committee survey of 112 Londoners with experience of an eating disorder, or of supporting someone with an eating disorder, highlighted how a person’s health can dangerously deteriorate while waiting, unsupported, for treatment to begin. One respondent said that “In the period of waiting for an assessment and then waiting for treatment my symptoms and weight drastically worsened. Waiting for an assessment and treatment made my eating disorder worse. I felt I needed to be good enough at my eating disorder to get help / be taken seriously”.
The Committee heard evidence that some GPs may lack knowledge or training around eating disorders, with some Londoners finding their doctor to be ill-informed and failing to make necessary referrals to specialist services. One survey respondent said their “GP brushed it off, said the numbers don’t add up and that I have a healthy BMI now and accused me of not telling the truth. This was after so long of trying to bring the courage to reach out”.
There are concerns that certain groups may face additional barriers in seeking support and their symptoms being recognised, with suggestions that there was an inaccurate but prevalent stereotype that eating disorders only affected “young, white females”, “middle class white women”, or “silly teenage girls”. One respondent stated: “I strongly feel my race (black) means I am overlooked and not fitting in narrow definitions of who has an ED (eating disorder)”. Another stated that it was considered strange to be a man in his 30s suffering from an eating disorder. The Committee also heard that there is particular concern around unmet need amongst people in London with autism.
The investigation
Alongside its FOI request and survey, the Committee held two formal meetings with expert guests including the charity BEAT, clinicians, people with experience of living with an eating disorder, and representatives from the Greater London Authority and NHS England. It also held a private session with people with lived experience of being affected by an eating disorder.
Recommendations
The Committee has published 12 recommendations for change including;
The Mayor should work with NHS England (London), including through the London Health Board, to advocate for the adoption of training on eating disorders across all GP practices in London.
The Mayor should request that NHS England (London) explores the feasibility of establishing self-referral routes for adult eating disorder services across London and the likely number of referrals that would be generated, so that the service set up can meet the needs of the patients self-referring.
The GLA Health Team should work with NHS trusts across London to ensure that: (1) all people on waiting lists for eating disorder services are provided with clear information and resources and, (2) additional interim support is commissioned for those on waiting lists who are at higher risk.
The Mayor should lobby NHS England (London) to ensure that health services are not rejecting nor prioritising patients for treatment for an eating disorder on the sole basis of BMI, as stipulated in NICE guidelines.
The GLA Health Team should work with NHS England (London) to conduct an audit across London of available eating disorder services to identify and address any gaps in provision for particular eating disorders, such as binge eating disorder and avoidant/ restrictive food intake disorder.
The Mayor should request that NHS England (London) supports the roll-out of specialist care pathways across NHS trusts in London for people with autism suffering from an eating disorder.
The Mayor and the GLA Public Health Unit should design and deliver a public awareness campaign on eating disorders across London, with the aim of addressing stigma and improving signposting to support services.
