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

13. Outcome 9: Shared and Supported Decision-making

This chapter presents the analysis of Q32 to Q34 about Outcome 9.

The vast majority (95%) of those answering Q32 agreed to some extent that Outcome 9 will improve the experiences of people accessing eating disorder treatment; 49% strongly agreed and 46% agreed. At least nine in ten of those in each sub-group agreed to some extent, with between 45% and 50% of each group strongly agreeing.

Very high levels of total agreement (92%) that Outcome 9 will improve the outcomes of people accessing eating disorder treatment were also recorded; 43% strongly agreed and 49% agreed. All other organisations who answered agreed, as did 91% of healthcare respondents and individuals. Strong agreement was slightly lower among individuals (36%).

Q34. Reading the “Outcome in Action”, which is intended to describe how “Outcome 9 - Shared and supported decision-making" will be delivered, do you have any other comments about the Outcome?

Two fifths of respondents provided an open comment at Q34. Most commonly, they agreed with recommendations at Outcome 9 or noted the benefits of inclusive information to facilitate shared and supportive decision-making.

“Structure, inclusion, and transparent information on timings/delays etc. will help those receiving treatment feel included and supported, as opposed to treatment being forced upon them with little to no agency, which can help in a sense of feeling like they are actively involved in their treatment.” – Individual

A small number emphasised the importance of developing collaborative care plans, and ensuring a person-centred approach to care, underpinned by individual choice. See Me shared that their volunteers suggested the Specification includes a standard such as “I will have a choice in what service I am referred to”. They felt individuals who disengage from a service should be offered another assessment or referred alternative support. See Me argued that this suggestion aligns with the Health and Social Care Alliance Scotland and VOX Scotland’s Access Standard report which calls for empowering patients to choose and access the right services at the right time based on their needs. A few respondents also requested that families and carers be included in shared decision-making – with explicit reference to advocacy support here.

“Our past experience is of variable consultation with family, it is essential that the views of those closest to the patient are fully addressed. It is only due to the tenacity of my wife that our daughter has a good outcome. Not all patients are as fortunate.” – Individual

“Make sure we have access to all our care plans and they are worked on with us.” – Individual

A small number of healthcare respondents and professional/academic organisations outlined caveats to shared decision-making. These included:

• That eating disorders may impact people’s decision-making capacity.
• The need for individual’s inclusion in decision-making to be proportionate and balanced against the severity of risk.
• Recognition that some with severe eating disorders may have to be detained, against their will, under the Mental Health Act.
• To attend to the principles of Realistic Medicine alongside those of collaborative care planning.
• Calls for further detail within the Specification on who will update people on anticipated timelines and delays, give that this often falls to general practice and is an additional workload for an already overstretched workforce.

The format of information provided was mentioned in two comments. One individual questioned whether this would be standardised but with local customisation. See Me urged consideration of accessibility issues when sharing care plans. They noted that digital documents usually are most accessible in Word rather than PDF format – particularly for screen readers. They also felt pictures and diagrams should be accompanied by text descriptions and paper copies should be available to ensure inclusivity for those with trouble accessing technology.

A few respondents expressed scepticism about achieving Outcome 9 recommendations. SupportED queried how adherence to the recommendations would be ensured. They noted that services currently claim to be following such guidelines, but anecdotal evidence suggests this is not always the case. They also suggested that third-sector organisations could bridge the gap in waiting time support and felt this should be explicitly referenced.

“I believe this will be empty but well-intentioned talk. I have rarely felt I have had any say in decisions. Either resources have determined decisions made, or it has saved time to make decisions without patient involvement or the patient is informed but not consulted with any chance to influence the decision.” – Individual