National Specification for the Care and Treatment of Eating Disorders in Scotland - Consultation Analysis Report

10. Outcome 6: Transitions

This chapter present the analysis of Q23 to Q25 about Outcome 6: Transitions.

Over nine in ten (92%) of those who answered Q23 agreed to some extent that Outcome 6 will improve the experiences of people accessing eating disorder treatment; 37% strongly agreed and 55% agreed. All individuals who answered agreed to some extent, as did 91% of healthcare respondents and 80% of other organisations.

Among those who answered Q24, 87% agreed to some extent that Outcome 6 will improve the outcomes of people accessing eating disorder treatment; 37% strongly agreed and 50% agreed. All individuals who answered agreed, as did 82% of healthcare respondents and 80% of other organisations.

Q25. Reading the “Outcome in Action”, which is intended to describe how the “Outcome 6 - Transitions" will be delivered, do you have any other comments about the Outcome?

Over half of respondents provided an open comment at Q25. As noted in chapter 3, positive comments were more prevalent for Outcome 6 than for other Outcomes. Respondents emphasised the need for improved transitions and described transitions as a key and achievable area for development.

“Carers also highlighted the need for smooth transitions between all services including between tiers or treatments… The outcomes, if implemented, will improve the current experience of transitions immensely.” – Edinburgh Carers Council

Transitions between health services

Support for reducing the need for re-referral and having clear transition protocols, policies and pathways between services was the second most common theme. NES felt these are essential to ensuring good communication between services and improving care. There were calls for transition protocols and pathways between a range of services and tiers including: CAMHS to adult services; specialist teams to primary care, CMHTs or adult mental health teams; inpatient to outpatient services; one inpatient service to another; to and from acute points of care, such as liaison psychiatry; and between geographical areas. The benefits of providing clear information about transitions and preparing and planning in advance, between teams and with individuals and families, were reiterated.

“Having clear transitions plans in place, where a service user receiving treatment is clearly passed between treatment teams/approaches without a gap, or getting lost in the system, is a really positive action.” – Individual

A small number raised advantages of having dedicated staff to support transitions, such as transition workers and named clinicians. One healthcare respondent, for instance, described positive feedback from individuals and families after an Adult Eating Disorder Service introduced a transitions practitioner to support transitions from CAMHS. They suggested these pathways could be replicated to support other transitions, such as between health board areas. Another felt that these roles should be developed across CAMHS, Adult and Older Adult services to support accountability and leadership during the transition process.

Some respondents shared negative experiences of transitions between child and adult services or raised the need to improve these transitions. Challenges with this transition identified in comments included: inadequate collaboration, planning and preparation for transition; delays transferring care to adult services due to long waiting lists; challenges attached to service delivery being linked to age cut-offs; young people being transferred to adult services based on service needs or chronological age rather than their best interests or developmental need; lack of alignment of treatment approaches between child and adult services -including the shift from an family-based to an individual model. One individual called for developing a hybrid child/adult transition pathway to provide a graded approach to moving between child and adult services and ensure young people who require child treatment models continue to receive this.

One healthcare respondent expressed a view that transitions are poorly managed for BED as this in not currently well recognised and treated across the age spectrum. Two respondents highlighted transition challenges and added complications within rural areas. For instance, one healthcare respondent explained that in health boards without specialist eating disorder beds there are even more points of transition and increased complexity and risks of cross board transfers. They felt that sharing electronic notes between areas would be helpful but expressed concern that health boards tend to be very siloed in their documentation processes.

“Various carers that we have spoken to have reported finding the transition from child to adult services particularly difficult due to firstly there being fewer services available for adults, and also a feeling that the carer role is minimised by services. For example the young adult may still be living at home, relying on parental support for the eating disorder, to keep appointments and manage paperwork but the carers were finding it difficult to be kept in the loop about treatment, which they felt was necessary to carry out their caring role.” – Edinburgh Carers Council

These communities have been stripped of specialised care options, such as community psychiatric nurses (CPNs) and psychiatrists, and therefore follow-up care during transition and discharge periods may be made more difficult, preventing individuals from returning home. We believe that specific mention of rural communities should be made within ‘Outcome 6’, acknowledging the added complications associated with rurality, and what alternative options may be available to increase transparency.” – The Scottish Women's Convention

Life transitions

There were mixed views about transitions to Further and Higher Education and retaining treatment where people move to a different area. See Me supported the proposal to work with University Mental Health Teams to promote consistent care. Another advocacy organisation also suggested adding the option for people to retain services within the health board they attend university, if this is where they begin treatment so they can access care during the holidays. They felt the obligation on health boards to accommodate this kind of flexibility should be made stronger within the Specification. However, others expressed concerns about the proposals on treatment retention. These included difficulties managing risk across localities, and that college/university mental health systems are often under resourced, have long waiting lists, and are under-equipped to support people with eating disorders. There were calls for education and training for staff at education institutions and to develop shared care arrangements, risk assessments and pathways between care providers so that governance and clinical responsibility is clear before any transition.

One healthcare respondent also emphasised the importance of routinely considering and being sensitive to other non-clinical transitions such as leaving home, retirement and bereavement. An advocacy organisation called for the Specification to include examples of different transition types, recognising that there are many.

“Managing a patient in secondary care in one health board whilst their GP is in another can create difficulties such as which health board should provide hospital admission if required and access to all medical information such as investigations results due to different IT systems. It can also make some risk issues difficult to manage.” – Healthcare respondent

Partnership working and collaborative transition planning

The overarching theme of the importance of partnership working was evident at Outcome 6. Additional points raised about transitions included:

• Querying the suggested transition timeframe for joint working of 6 months. It was suggested timeframes should be left open and based on individual need.
• The need for multi-agency planning, strong connections between services and sharing of information with partner organisations, to support successful transitions.
• The importance of considering existing supports e.g. third sector and not duplicating or complicating their role in supporting carers.

A small number agreed with the recommendation for collaboration and effective communication with individuals and carers about transition planning. One individual and a healthcare respondent stressed the importance of collaborative decision-making based on service-users’ best interests rather than service needs, arbitrary time frames, or age cut-offs. One healthcare respondent felt that individuals should be able to remain in a service until interventions are completed or additional interventions can be provided by the receiving service. The Edinburgh Carers Council called for more information for carers from the outset about how each tier/service works, with a diagram to help them understand and prepare for transitions. An advocacy organisation felt the ‘practical examples of evidence of achievement section’ should include carers' feedback about transitions. Finally, a view expressed in two comments was that considering and meeting individual’s human rights within the transitions process is key.

“There will always be transitions of different forms and improved communication and sharing of information with partner organisations, as well as involvement of the patients and their carers is critical to improve the experience of them.” – RCPsych. Scottish Faculty of Eating Disorders

“See Me would like to ensure that a copy of the care plan is emailed/mailed to individuals, so they have the option to access it themselves as they move forward between services. This should be provided in an accessible and clear format in their preferred language with relevant funding for translation services. NICE guidance highlights that the person’s preferences should be taken into consideration when setting treatment plans therefore we champion a process of co-production within care plans.” – See Me