Written evidence submitted by Beat (CYP0110)

Executive summary

Progress

The introduction in 2015 of the ‘Access and Waiting Time Standard for Children and Young People with an Eating Disorder’[i] set clear expectations regarding access to evidence-based treatment for children and young people with an eating disorder in England. The additional funding, staff recruitment and training that has accompanied this has enabled significantly more children and young people with an eating disorder to quickly access evidence-based treatment.

However, it must be recognised that progress has varied widely across England; and with demand continuing to rise - and being anticipated to rise even further due to COVID-19 - there are causes for concern that the momentum developed in the last few years could be lost.

Recommendations

Beat recommends that the committee questions the Government and NHS England/Improvement on how they will ensure that the Access and Waiting Time Standard for children and young people with an eating disorder is achieved not just at the national level, but in every area of England.
Beat recommends that the committee asks the Government and NHS England/Improvement whether there are any CCGs that have failed to commission a dedicated children and young people’s eating disorder service in line with the 2015 NHS England commissioning guidance; and if so, what actions they will take to address these gaps.
Beat recommends that the committee asks the Government and NHS England/Improvement a) whether all children and young people with an eating disorder are able to access services directly via a range of referral pathways, including self-referral, families or other carers, education, primary care and the voluntary sector; and b) what steps will be taken to close the gaps that remain.
Beat recommends that NHS England/Improvement clarifies within the Mental Health Support Teams (MHST) manual, how MHSTs will fit into the referral to treatment pathway for children and young people with an eating disorder.
Beat recommends that the Government commissions appropriate training in eating disorders for Mental Health Support Teams, Designated Senior Leads for Mental Health, teachers and other school/college staff.
Beat recommends that the Government ensures joint working between schools/colleges and children and young people’s eating disorder services is included within the work of the Mental Health Services and Schools and Colleges Link Programme, and its evaluation.

Beat recommends that the Government evaluate the mental health impacts associated with the National Childhood Measurement Programme (NCMP).
Beat recommends that NHS England/Improvement and NCAPOP commission a comprehensive all-age eating disorders clinical audit.
Beat recommends that the committee asks the Government and NHS England/Improvement how they will ensure that all CCGs/ICS treat the ‘additional funding’ they are allocated for children and young people’s community eating disorder services as intended, so that it is spent in addition to pre-existing spend.
Beat recommends that the Government commissions and fully funds a long term workforce strategy for the NHS in England that includes actions that would ensure all eating disorder services can recruit, train and retain the staff they need.

Introduction

Beat is the UK’s eating disorder charity. We exist to end the pain and suffering of eating disorders, and we are here to help anyone affected by these serious mental illnesses.

Our national Helpline exists to encourage and empower people to get help quickly, because we know the sooner someone starts treatment, the greater their chance of recovery. People can contact us online or by phone 365 days a year. We listen to them, help them to understand the illness, and support them to take positive steps towards recovery. We also support family and friends, equipping them with essential skills and advice, so they can help their loved ones recover while also looking after their own mental health.

And we campaign to increase knowledge among healthcare and other relevant professionals, and for better funding for high-quality treatment, so that when people are brave enough to take vital steps towards recovery, the right help is available to them.

We are submitting evidence to this inquiry because it is an important opportunity to support further progress in improving access to evidence-based treatment for children and young people with an eating disorder and support for families and other carers.

Access and waiting times

NHS England’s children and young people’s eating disorder programme [ii] aims to significantly expand access to treatment, whilst reducing waiting times. According to NHS England data [iii], the number of children and young people that started eating disorder treatment in 2019/20 (8,034) was 53% higher than in 2016/17 (5,243).
In 2019/20, 77% of urgent cases started treatment within the standard of 1 week from referral, and 85% of (so-called) routine referrals started treatment within the standard of 4 weeksiii. This compares to 65% of urgent cases, and 73% of routine cases starting treatment within the respective standards in 2016/17iii.
The Government and NHS England/Improvement have statedii that they are on track to meet the Access and Waiting Time Standard for children and young people with an eating disorder (at the national level) by 2020/2021. It is important to look beyond national averages to the regional and more local levels, where there is significant variation in performance against the access and waiting time standard.
In 2019/20, 94% of routine cases in the North West NHS region started treatment within the target of four weeks, in contrast to 74% in the South Eastiii. In 2019/20, the percentage of CCGs with 15 or more urgent cases starting treatment within 1 week varied from 22% to 100%, and for CCGs with 40 or more routine cases, the percentage starting treatment within 4 weeks ranged from 55% to 100%iii.
Beat recommends that the committee questions the Government and NHS England/Improvement on how they will ensure that the Access and Waiting Time Standard for children and young people with an eating disorder is achieved not just at the national level, but in every area of England.
The Access and waiting time standardi specifies access to “NICE-concordant” treatment. The NHS England commissioning guidance published in 2015 describes service models capable of enabling the NHS to deliver such treatmenti. NHS England states on its website that “Dedicated community eating disorder services improve outcomes and cost-effectiveness”ii.
Beat recommends that the committee asks the Government and NHS England/Improvement whether there are any CCGs that have failed to commission a dedicated children and young people’s eating disorder service in line with the 2015 NHS England commissioning guidance; and if so, what actions they will take to address these gaps.

Referral pathways

NHS England commissioning guidancei prescribes a service model where children and young people and their families or other carers can access services directly through self-referral, education, primary care or the voluntary sector. On self-referral the commissioning guide states that: “Young people and their parents or carers may self-refer... Each service should have clear, accessible contact details on a website, which are easy to find via main search engines, with clear instructions in appropriate languages on how to call the service, send an email or complete an online self-referral form.” (p.28). And also: “Commissioners need to ensure that there are clear self-referral routes into the CEDS-CYP, including a communication plan to ensure children and young people, their families and carers and other professionals are aware of how to access services” (p.56).
Despite the clarity of this guidance, self-referral is still not available in many areas. In January 2020 Beat found that only a third of these services were advertising self-referral as an option on their website.
Beat recommends that the committee asks the Government and NHS England/Improvement a) whether all children and young people with an eating disorder are able to access services directly via a range of referral pathways, including self-referral, families or other carers, education, primary care and the voluntary sector; and b) what steps will be taken to close the gaps that remain.

The 2017 Green paper and mental health support in schools

The 2017 Green paper [iv] stated that Mental Health Support Teams would provide interventions to address the needs of some pupils and students with “mild to moderate mental health needs”. During consultation, the Government provided assurances to mental health charities that the teams would represent “new capacity”.
NICE guidance [v] endorses the importance of specialist treatment for people with eating disorders, with recommendation 1.2.10 stating: “If an eating disorder is suspected after an initial assessment, refer immediately to a community-based, age-appropriate eating disorder service for further assessment or treatment.”
The removal of clinical/severity thresholds governing access to specialist assessment and treatment is a key principle of the Access and waiting time standard for children and young people with an eating disorderi. The introduction of Mental Health Support Teams must not be allowed to undermine progress in this area by preventing or delaying children and young people with an eating disorder from accessing specialist assessment and treatment offered by eating disorder services.
Beat recommends that NHS England/Improvement clarifies within the Mental Health Support Teams (MHST) manual [vi], how MHSTs will fit into the referral to treatment pathway for children and young people with an eating disorder.
Mental Health Support Teams (MHSTs), Designated Senior Leads for Mental Health, teachers and other school/college staff are well placed to facilitate early intervention for children and young people with eating disorders by identifying potential cases early and arranging referral for specialist assessment. To enable them to fulfil this role they must receive sufficient training in eating disorders.
Teachers and other school staff who took part in research by Dr Knightsmith and colleagues reported a lack of knowledge about eating disorders within their schools and a lack of confidence about what to do if they thought a pupil may have an eating disorder [vii]. Ninety-one percent of school staff who had not received training on eating disorders (n=316) said they would welcome the opportunityvii.
Beat recommends that the Government commissions appropriate training in eating disorders for Mental Health Support Teams, Designated Senior Leads for Mental Health, teachers and other school/college staff.
As well as training, good communication between schools/colleges and eating disorder services can enable schools/colleges to provide effective support and can ensure consistent messages and management of carei.
Beat recommends that the Government ensures joint working between schools/colleges and children and young people’s eating disorder services is included within the work of the Mental Health Services and Schools and Colleges Link Programme [viii], and its evaluation.

To achieve whole-school/college approaches to mental health it is important to consider existing risks in the school environment. For some children, the National Childhood Measurement Programme (NCMP) process currently followed in many education settings can trigger restrictive eating patterns and preoccupation with weight, which can later develop into an eating disorder [ix].

Beat recommends that the Government evaluate the mental health impacts associated with the National Childhood Measurement Programme (NCMP).

Data

Since the start of publication in 2017 statistics concerning waiting times for children and young people with an eating disorder have been designated as ‘experimental statistics’ due to concerns about the quality and completeness of the dataiii.
Providers of eating disorder services are obliged to submit significant volumes of data to the Mental Health Services Data Set (MHSDS)[x], but little of this is subsequently published. No data is published on referrals closed without starting treatment, health inequalities in access to these services, or treatment outcomes.
Only two of the 31 current National Clinical Audit and Patient Outcome Programme (NCAPOP) audits are mental health related [xi]. A national all-age eating disorders clinical audit could significantly improve the quality and quantity of data collected on children and young people’s eating disorder services.
Beat recommends that NHS England/Improvement and NCAPOP commission a comprehensive all-age eating disorders clinical audit.
Currently the statistics published by NHS England concerning waiting times for children and young people with an eating disorder and CCG spending on these services are disaggregated at the national, NHS region, STP/ICS and CCG levels (as well as by provider for the former)iii; [xii]. In light of continued CCG mergers and proposed changes to NHS commissioning structures, this and other data should be broken down in new ways such as at the ‘place’ (sub-ICS) level.

Funding

In recognition of rising referrals to children and young people’s community eating disorder services, NHS England increased the level of additional funding allocated to CCGs in 2019/20 by £11m (above the 2018/19 baseline), and by a further £11m in 2020/21ii. Clinicians have expressed concerns that, in many areas, this additional funding has not translated into increased investment from commissioners in frontline services.
In Implementing the Five Year Forward View for Mental Health, NHS England stated that “Additional funding should not be seen in isolation and should not be used to supplant existing spend or balance reductions elsewhere” (p.4)[xiii]. On its website NHS England describes such funding as being “in addition to existing resources already used to support Eating Disorders”ii.
Beat recommends that the committee asks the Government and NHS England/Improvement how they will ensure that all CCGs/ICS treat the ‘additional funding’ they are allocated for children and young people’s community eating disorder services as intended, so that it is spent in addition to pre-existing spend.

Workforce

The Royal College of Psychiatrists has highlighted shortages in psychiatric input in children and young people’s community eating disorder services [xiv]. Health Education England’s ‘Stepping Forward to 2020/2021’ mental health workforce strategy [xv] included an objective to recruit an additional 30 consultant eating disorder psychiatrists by 2020/2021.
Eating disorders are generally overlooked in UK medical training, both in terms of theoretical teaching and clinical experience [xvi]. Research suggests that most non-specialist doctors lack confidence in and knowledge of how to help patients with eating disorders, and that this leads to delays in treatment and inappropriate managementxvi.
In 2017 the Parliamentary and Health Service Ombudsman (PHSO) highlighted the urgent need to improve the coverage of eating disorders in the training of tomorrow’s doctors and other health professionals (as well as the existing workforce), as a matter of patient safety, and to support integrated care [xvii].
Meeting this need would also help encourage more trainee doctors and other health professionals to specialise in eating disorders, which is very important considering existing workforce gaps.
Beat recommends that the Government commissions and fully funds a long term workforce strategy for the NHS in England that includes actions that would ensure all eating disorder services can recruit, train and retain the staff they need.

[v] National Institute for Health and Care Excellence (NICE) (2020) Eating disorders: recognition and treatment. Available at: https://www.nice.org.uk/guidance/ng69.

[vii] Schmidt U, Sharpe H, Bartholdy S, et al. (2017) ‘Chapter 2, The development and feasibility testing of an eating disorders training programme for UK school staff (work package 1a)’. In: Schmidt U, Sharpe H, Bartholdy S, et al. Treatment of anorexia nervosa: a multimethod investigation translating experimental neuroscience into clinical practice. Southampton (UK): NIHR Journals Library (Programme Grants for Applied Research, No. 5.16.). Available from: https://www.ncbi.nlm.nih.gov/books/NBK448402/.