Professor Iain Carpenter
Date: May 2020
I saw him shortly after and was called again at 10pm to be told that he had been taken to hospital. I went straight to the hospital emergency department, where patients filled the beds, the waiting room and trolleys, crammed into the corridors. With the Emergency Medicine Physician, I asked Bob if he would like to go back to the care home – of course he said yes, so we went, arriving back at 11.15pm. His admission had been inappropriate. It brought to mind a quote from David Oliver, recent RCP Vice President : ‘’Few doctors working in acute medicine get through an on-take shift without seeing patients brought by ambulance from care homes. If it’s distressing for us to witness, it’s much more so for them.” (David Oliver in the BMJ).
The paramedics had followed their protocols based on NICE guidance. They hadn’t asked him if he wanted to be taken to hospital.
The rationale for admission, was that he had hit his head and might be suffering from intracranial bleeding, a diagnosis that requires a CT head scan. However very frail very old people do very badly if they are treated aggressively in this situation. Had he been in hospital, he would have been observed overnight and the situation reviewed in the morning. Was there any reason why he couldn’t have been kept under observation in the care home and reviewed in the morning, by the GP if necessary?
So what does this story have to do with Coronavirus? There has been a lot of discussion about people’s wishes for their care during the pandemic, and differences of opinion about whether frail elderly people at the end of life should be admitted to hospital with coronavirus or made comfortable in their own room in a care home. We need to ensure that everyone feels safe, secure and comfortable with equal access to good care and that care reflects a person’s health, needs and wishes.
The issues here are about consent, now called shared decision making, the context in which the paramedics’ protocols and NICE guidance were being applied and finally the degree to which care homes are properly resourced to do the work that is demanded of them, by their residents and their relatives.
The Supreme Court Montgomery Judgement clarified the importance of giving appropriate recognition to patients as decision makers . Bob should have been asked whether he wanted to go to hospital. There should have been no assumption that he would be unable to consent without a formal assessment of competence. And what of the older people with COVID-19? What was their choice, did they have one?
[1] The PRSB are developing an evidence and consensus based care record standard for informing and supporting support shared decision making
A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with.
1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?
Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example.
Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.
A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.
A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.
The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;
1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?
The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.
