3The quality and availability of adult services, and the transition from child to adult services
Box 2: PHSO Recommendation Two
The Department of Health and NHS England should review the existing quality and availability of adult eating disorder services to achieve parity with child and adolescent services.
Source: Ignoring the Alarms: How NHS eating disorder service are failing patients, Parliamentary and Health Service Ombudsman, December 2017, p 16
Background to the recommendation
33.The PHSO’s report indicated that “moving between services is a particularly challenging time for people with eating disorders” and that, “there also needs to be greater availability of good quality adult eating disorder services, which are currently subject to significant geographical variation meaning access to specialist support can be hugely divergent.” It notes that child and adolescent services have “received specific focus in recent years” in terms of funding and development of guidance to improve services and establish and maintain community eating disorder services. The report suggested that the Department of Health should consider developing benchmarking guidance for adult eating disorder services and appropriate measures for monitoring the success of such guidance.36
34.Evidence to this inquiry was consistent; it described adults’ access to eating disorder services as geographically variable. Beat, Miss Hope Virgo and participants in our informal seminar described such access as a “postcode lottery”.37 Beat further stated that waiting times for adult community services varied but were “long in many areas”.38 The Royal College of Psychiatrists echoed this, saying that “the experience of Miss E, in the PHSO report, with no apparent access to specialist services, is not unusual” but suggested that “solving this problem is not simply a matter of money. There is a shortage of specialist staff and many Trusts find it difficult to fill vacancies across the professions.”39 The people we spoke to with lived experience confirmed that they had experienced very long waiting times and, in some cases, complete lack of access to specialist treatment. Nic Hart, Averil Hart’s father, highlighted in a written submission a number of vacancies currently in the Norwich Clinical Commissioning Group, which helps demonstrate the staff shortages currently affecting services.40
35.Dr Nicholls told us in oral evidence that the pressure on adult mental health services was “probably about six times that on child and adolescent services” and that:
The reasons for investing in child and adolescent eating disorders were very clear at the time. We were spending a huge amount of money on inpatient treatment for adolescents at a time when we could and should have been intervening in a home environment with families. The evidence for that was very clear. The evidence in adults was less clear and, therefore, I think there was a strong rationale for investing in child and adolescent services at the time. However, what that has now created is a cliff edge at the age of 18 for people who are trying to access services.41
36.In our round table discussions, we heard from people with lived experience about a stark difference in the level of care when they or those they cared for moved from child and adolescent to adult services. The cut off at 18 years old was particularly difficult as this often coincided with a move to university, as was the case for Averil Hart. They, therefore, advocated extending child and adolescent services to ensure a smoother transition. A number of participants also noted the difference in the approach of medical professionals to parental involvement which was sometimes no longer welcomed.
37.Specific concern was raised in written evidence to us about the availability of services for people who have autism. Autistica explained that one in five women with anorexia in eating disorder services are autistic and they “face worse outcomes than their non-autistic peers, with reduced levels of recovery and more persistent difficulties with their wider mental health, social skills and employment.”42 An anonymous contributor to our inquiry, A1, explained that in their family’s experience “eating disorder services are not equipped to deal with autistic people who develop eating disorders and NHS staff are unwilling to have their expertise challenged.”43
Progress made on the recommendation
38.When asked about progress against this recommendation, NHS England described a number of steps they have taken:
- In 2017, NHS England commissioned NHS Benchmarking to collect data on the levels of provision across community and inpatient services for adults with an eating disorder in 2016/17. The outputs on provision, investment and workforce were reported to NHS England in March and June 2018. The outputs of this data collection informed a modelling exercise to establish the baseline, understand the geographical variation, and the cost and workforce required to achieve parity with children and young people’s eating disorder services.
- In 2018, NHS England established an Adult Eating Disorder Expert Reference Group, chaired by Professor Tim Kendall and Jess Griffiths, an expert by experience, to help review the data and modelling for the NHS Long Term Plan.
- NHS England commissioned the National Collaborating Centre for Mental Health at the Royal College of Psychiatrists to work with the Adult Eating Disorder Expert Reference Group to:
- develop guidance and helpful resources on effective models and costs of delivery;
- establish the staffing skill-mix required; and
- define quality measures and data metrics to demonstrate outcomes and test potential waiting time standards that will address inequity and create parity with children and young people eating disorder services.44
There is also a commitment in the NHS long term plan to trial four-week waiting times for adult and older adult community mental health teams,45 although we note this is not specific to eating disorders.
39.One of the primary responses to the PHSO’s report was the setting up of a working group, the PHSO Delivery Group. The Group was established by NHS England and chaired Professor Tim Kendall, the NHS England and NHS Improvement National Clinical Director for Mental Health. The Group’s objectives were to:
- support and inform the delivery and implementation of each recommendation;
- help coordinate and support stakeholders’ work streams to deliver the recommendations and implementation plans;
- provide timely and relevant data and reporting products to inform the PHSO and stakeholder programme boards on progress;
- ensure alignment between this programme of work and other relevant work programmes across the stakeholder organisations; and
- receive the operational elements of developed programme proposals for discussion and approval prior to sign off by Mental Health and Parity of Esteem Programme Board.46
The Group is comprised of representatives of the following organisations:
Table 1: The PHSO Delivery Group
|
Organisation |
Job title |
|
Department of Health and Social Care |
Programme Lead: Mental Health Delivery |
|
National Institute of Clinical Excellence (NICE) |
Implementation Manager–System Support for Implementation |
|
Health Education England |
Programme Manager |
|
NHS England–Mental Health Policy |
National Clinical Director for Mental Health; Programme Manager; Business support officer |
|
NHS Improvement |
Deputy Director of Patient Safety (Policy and Strategy) |
|
General Medical Council (GMC) |
Head of Policy (Education) |
|
Implementation partners |
|
|
Care Quality Commission |
Head of Mental Health Policy |
|
Royal College of Psychiatrists |
Chair of the Eating Disorder Faculty |
|
NHS England–Primary Care |
Director of Primary Care Commissioning |
|
NHS England–Diabetes |
National Clinical Director for Diabetes and Obesity at NHS E and Strategic Clinical Network Lead |
|
NHS England–Specialised Commissioning (inpatient care) |
Mental Health Programme of Care Senior Manager |
|
Expert by Experience |
Student and co-chair of clinical network for eating disorders in East of England. |
Source: Department of Health and Social Care, Health Education England and the National Institute for Care Excellence, IDF0017
40.The Government’s written evidence described this recommendation as having been “implemented”.47 No other witnesses to our inquiry suggested this was the case.48
41.Professor Tim Kendall accepted that there is a ‘postcode lottery’ in terms of access to specialist services.49 When we asked what was being done to remedy this, he pointed to two “major pieces of work”:
- Repatriating the investment in eating disorder in-patient beds and asking localities to reinvest that money into community eating disorders services; and
- Refining the long-term plan to develop community-based services “covering all the main serious mental illnesses”, which included eating disorders.50
42.Repatriating investment from inpatient care to community services has the potential to deliver value for money. Mr Radford argued that community services are as effective as inpatient care and much cheaper to provide.51 Beat’s research has suggested that providing treatment to people as soon as possible can provide benefit to patients and families as well as delivering “significant cost savings” for the NHS.52 Specifically the research suggested a relatively short inpatient stay can cost over £40,000 more than intensive community-based treatment. The report concluded:
While outcomes cannot be guaranteed, early intervention will always have a better chance of achieving a positive outcome than delayed intervention, and always at lower cost to the NHS.53
43.As part of the NHS Long Term Plan, mental health will receive a growing share of the NHS budget “worth in real terms at least a further £2.3 billion a year by 2023/24.”54 Professor Kendall explained that a “sizeable” part of this will be devoted to community mental health and would include eating disorders, although the exact figures had not yet been decided.55
44.People with lived experience of eating disorders described a “cliff edge” in relation to the transition from inpatient care to community care. One attendee to our informal seminar said there was an “almost farcical” difference in the provision between inpatient care and community care. Another agreed there was a “massive problem” with community services - their level of provision varied greatly between areas. It was stressed to us that it was vital that there were proper “step down” services to support a person’s transition from inpatient to community care to help patients from relapsing. We were further told that many people are discharged from inpatient care based on their weight and that a person’s physical recovery did not guarantee that they had also mentally recovered.
45.We welcome the increased funding for mental health within the NHS long term plan but we recommend that NHS England set out how much of this funding will be specifically allocated to adult eating disorder services.
46.We support NHS England’s plans to transfer investment from inpatient services to community care which has the potential to deliver greater value for money. Better community service provision is essential not only to help prevent people from becoming so ill that they need hospitalisation but also to support people who are discharged from hospital, to avoid relapsing and therefore requiring further hospitalisation. Although we accordingly welcome greater funding for community services, NHS England must also ensure that there is adequate inpatient capacity.
47.In our informal seminar with people who had lived experience of eating disorders, we were told there was potential for more involvement of family or carer support in adult eating disorder services. Though we recognise this is a complicated matter, such support can be extremely important for people with eating disorders.
48.The PHSO in its written evidence welcomed “the leadership” NHS England had shown in response to the report and expressed that “this will set the groundwork for achieving tangible improvements in the quality and availability of adult eating disorder services.”56
49.We welcome the steps that have already been taken and that the NHS is piloting the introduction of a four-week waiting time target for adult and older adult community mental health teams, which has the potential to improve the provision of services for patients. We hope this will be transformed from a pilot to an appropriately funded business as usual target.
50.Although there are a number of welcome ambitions to improve quality and availability of adult eating disorder services, it is clear that there has not yet been delivery of substantive improvements in that provision. Accordingly we find it disturbing that the Government claims that the PHSO’s recommendation on achieving parity of adult eating disorder services with child and adolescent services has been implemented, when this it is clear that this is not the case. This work must be done and this should be championed by the PHSO Delivery Group. As part of its work under this PHSO recommendation, we recommend the NHS have particular regard to ensuring the needs of autistic patients are met.
51.We asked Dr Kendall in oral evidence about when the work of the Expert Reference Group would be published, in his answer he gave further details on the work that Group had done:
I am not 100% sure when it will be published, but I am pretty sure we will be publishing it over the next few months. The work we have done is basically to get a group of experts of different kinds—research, practice, experts by experience—to take the NICE guidelines, the NICE quality standards, which a number of us were involved in producing, and look at how we can get this into practice at the same time as finding out what the gap was between where we are and where we need to be. That has meant doing quite a lot of work around workforce: what sort of workforce are we going to need and how will we get that workforce in the face of the difficulties that Sir Bernard has already referred to? It is quite a complex piece of work, and we do want to get it right. I anticipate that over the coming months we will publish something from that work that will be helpful to the system. That is the key thing, that it will be helpful to the system, rather like a recipe would be helpful to a cook.57
52.Dr Nicholls in oral evidence told us that the expert reference group’s work to develop commissioning guidance for adult eating disorder services was completed and the report was currently with NHS England awaiting release.58
53.NHS England established an Adult Eating Disorder Expert Reference Group, chaired by Professor Tim Kendall and Jess Griffiths, an expert by experience, to help review the data and modelling for the NHS Long Term Plan. We Commend NHS England for establishing the Adult Eating Disorder Expert Reference Group to help review data and modelling for the NHS Long Term Plan but the Government must publish the Expert Reference Group’s report as soon as possible. If the Group’s report has not been published by the time the Government publishes its response to our report, the Government should provide a timeline for the publication of the Expert Reference’s Group’s report in that response.
Prevalence of eating disorders
54.The appropriate level of provision of eating disorder services is further complicated by the fact that information on the prevalence of eating disorders is imprecise. In its evidence to us, the Government cited a 2015 report commissioned by Beat, suggesting the number of patients with eating disorders is between 600,000 and 725,000.59 Beat has more recently estimated the figure to be 1.25 million.60 The Government’s written evidence noted that SCOFF, the eating disorder screening tool, will be added to the 2019 Health Survey England, to improve information about the prevalence of eating disorders.61
55.In oral evidence, Dr Nicholls told us that the “prevalence data are not as good as we would like”62 and that a national clinical audit would be needed to fully understand the picture.63 Andrew Radford, suggested that even the 1.25 million figure was “almost certainly” an underestimate, which in turn causes under-resourcing.64 Professor Kendall explained there was contradictory information but the best estimate, in view of the Expert Reference Group, was that “over a lifetime 6% of people will develop an eating disorder.”65
56.The lack of information about the prevalence of eating disorders is made even more serious by the fact that we were told, in our roundtable discussions, that eating disorders have the highest mortality rate of mental illnesses. We were also told by attendees that eating disorders “thrive in secrecy” and therefore go undiagnosed which further makes it difficult to measure their prevalence and that estimates of the number of people with eating disorders were very likely to be underestimates.
57.A lack of precise information on the prevalence of eating disorders is shocking, given the claims that up to 1.25m people are suffering from eating disorders and the fact that eating disorders have the highest mortality rate of mental illnesses. This vagueness limits the ability of NHS commissioners to gauge what services need to be provided and encourages them to devote resources to better recorded diseases and conditions. We welcome the inclusion of SCOFF (the eating disorder screening tool) in the 2019 Health Survey England to improve this information about the prevalence of eating disorders but recommend as a matter for urgent action that NHS England commissions a national population-based study to accurately assess the number of people who have eating disorders. It is essential such research does not simply look at the numbers of people who have been diagnosed with eating disorders, the evidence we have heard suggests that eating disorders are under-reported and are inherently secretive conditions.
36 Ignoring the Alarms: How NHS eating disorder service are failing patients, Parliamentary and Health Service Ombudsman, December 2017, p 15
44 Department of Health and Social Care, Health Education England and the National Institute for Care Excellence, IDF0017
45 The NHS Long Term Plan, January 2019, p 69
46 Department of Health and Social Care, Health Education England and the National Institute for Care Excellence, IDF0017
47 Department of Health and Social Care, Health Education England and the National Institute for Care Excellence, IDF0017
48 See for example: Parliamentary and Health Service Ombudsman, IDF0010; Royal College of Psychiatrists, IDF0011
52 Delaying for years, denied for months: The health, emotional and financial impact on sufferers, families and the NHS of delaying treatment for eating disorders in England, Beat, November 2017
54 NHS Long Term Plan, NHS, January 2019, p 68
59 Department of Health and Social Care, Health Education England and the National Institute for Care Excellence, IDF0017
Published: 18 June 2019