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This module aims to help eating disorders professionals:
Please note that to avoid lengthy descriptions we will talk about CAEDS (Child and Adolescent ED services) and AEDS (Adult ED services), although we are aware that some such transitions may involve generic CAMHS.
In a hurry? Click the links below to jump to each of the different sections of this module:
Watch the video below to hear what young people have to say about their experiences of service transitions.
For more information about the potential pitfalls of poorly-managed transitions, you can read the Averil Hart Report. This Parlimentary and Health Service Ombudsman report details the case of a 19-year-old with anorexia nervosa who died after a number of NHS organisations failed to provide adequate care and support as she began her first year at university.
Some of the key themes in the report include:
Meera presents to her GP at age 16 ¾ with anorexia nervosa.
Meera deteriorates despite FT-AN and is referred for in-patient EDS
There is some improvement and Meera is discharged, to receive further CAEDS treatment.
Meera gradually deteriorates again. She turns 18 and is handed over to AEDS.
"When I was seen at CAEDS I was really not ready to have help, but I really liked the CAEDS therapist I had after my first admission. It really sucked having to start with the adult service, but some of the individual work there was useful. "Meera
Meera has a referral from CAEDS.
By the time outpatient therapy is available for Meera, her condition has deteriorated so much that she needs another admission.
Meera attains a normal weight post-discharge, but starts to binge eat regularly. Meera then wants to start University away from home and is referred to services there.
Meera is referred to her university service away from home. They have a long waiting list and say they do not accept people with binge eating disorder.
"As a family we have been through hell and back. Our darkest period was when Meera had come out of hospital after her first admission. She was getting worse, yet she was handed over to the adult team regardless and they took their time to spring into action, and by then Meera needed a second admission. She is a lot better now, but what if she needs help whilst at University? It seems that the system really is not set up for young people moving around."Meera's Mum
Blum et al.'s definition was designed for (and applicable to) young people with conditions that start at birth or in childhood, and potentially require life-long ongoing treatment and support.
Examples include: cystic fibrosis, T1 diabetes or neurodevelopmental disorders.
For these types of conditions, some general features tend to be relevant:
However, the typical transition scenario in relation to eating disorders (EDs) is quite different.
In the UK, most ED services are separated into CAEDS and AEDS, with service transitions at age 18, coinciding with the age of majority.
Implication: There is a lot of potential for the 5Ds to ‘kick in’ here.
Emerging adulthood, age 18-25, is increasingly recognised as a unique developmental period (Potterton et al., 2021a), with many societal factors also adding potential stresses and pressures.
The period is characterised by a strong drive for autonomy and for the first time combined with the means (legal, financial and practical) for exerting this.
However, 18 year olds will vary enormously in their capacity to steer their own ED care.
Thus, we cannot expect them to have the motivation, knowledge and skills needed to negotiate the NHS by themselves, especially as AEDS often are not resourced to accept self-referrals.
Research has shown that emerging adults in general and those with EDs specifically find help-seeking very hard (Potterton et al., 2021 b).
This has implications for service transitions, as the natural inclination of these young people may be ‘not to bother’ with another service.
(Herpertz-Dahlmann and Schmidt, 2022)
(e.g. Viljoen et al., 2022)
Why this difference?
Typically in a given area AEDS are larger than CAEDS, therefore transition patients make up a smaller proportion of their referrals.
Other Potential Contributors to the Referral Gap
What is the Diagnostic Mix of Transition Patients Referred to an AEDS Team (Belli et al., in prep):
Reflection:
Pros: Clear rules, equitable.
Cons: Not patient-centred.Pros: More patient-centred. Recommended by RCPsych guidance.
Cons: May be unduly influenced by carer-clinician relationships. Has resource implications.Pros: Goes across the peak period of onset of EDs and for many people there won’t be a need for a transition.
Cons: Does introduce a service transition at a later time point.Pros: Bypasses the need for any age-related transitions. Reduces ‘transition bureaucracy’.
Cons: Need to ensure that staff are dually trained in delivering care for younger and older patients.[Video] Interview with Sheryllin Mcneil about age integrated services (10mins)
A recent study assessed priorities of clinicians (CAEDS and AEDS), young people and parents with regards to better manage transitions (Wales et al., 2022).
All three groups highlighted:
Patients and Carers:
Clinicians:
Much has been made of the different ethos between CAEDS (more family-focused) and AEDS (more autonomy/responsibility focused).
NICE guidelines recommend family-interventions as the main treatment for young people below age 18 and individual treatments for those age 18 and over.
However these differences are increasingly becoming blurred.
Hover over the cards below to see examples.
NICE emphasise the need for AEDS to involve parents or carers in assessment and treatment, especially where there is high medical risk.
It is increasingly recognised that with adaptations, family interventions are effective in those aged 18+.
Likewise, individual therapies (adapted CBT-ED or MANTRA) are effective in those below age 18.
Bulimia Nervosa further reading: Schmidt et al., 2007; Anorexia Nervosa further reading: Eisler et al., 2016; Nyman-Carlsson et al., 2020; Dalle Grave and Calugi, 2020; Le Grange et al., 2020; Wittek et al., 2023
In line with these findings, a recent systematic review on the topic of age-related transitions highlighted that:
there are more similarities than differences between CAEDS and AEDS
there should be greater integration between these services
Watch the video below to hear Professor Tracey Wade discuss the findings from her review and their implications.