Using the About Me standard to understand people's preferences and promote person centred care

A guest blog from Chris Graham, Chief Executive at Picker.

Picker is a charity with a vision of “the highest quality person centred care for all, always”: It is this vision that has fuelled our work, ensuring patients and service users remain at the heart of care services.

Our late founder, Harvey Picker, has been credited with popularising the phrase “no decision about me without me” . That phrase became a centrepiece of UK government policy on health and social care from 2010, when it was adopted and amplified by the then Secretary of State for Health, Andrew Lansley.

Despite policy commitments and a growing body of research that highlights the overwhelming benefits of shared decision-making, the reality doesn’t reflect the demand. Recent major surveys have revealed patients and service users continue to experience care that is not person centred. Hospital inpatients discharged in November 2020 were asked in a CQC survey how much the staff looking after them involved them in decisions about their care and treatment. Almost one in five (18%), said “not very much” or “not at all”. NHS England’s 2021 Cancer Patient Experience Survey produced similar results. More than 20% were not “definitely” involved as much as they wanted to be in decisions about their treatment.

A lack of involvement is not just a question of shared decision-making. It also speaks to the extent to which health care services orientate themselves – or fail to orientate themselves – around their users. Where practice remains paternalistic, it can reflect an implicit assumption that clinicians know what patients want and what matters to them – or worse, that understanding individuals’ preferences is not a priority.

One of the fundamental tenets of person centredness is “involvement in decisions and respect for preferences”: this is one of the eight domains of Picker’s Principles of Person Centred Care. To be able to respect people’s preferences, providers and professionals must first understand what matters to them as individuals. Eliciting this information is an important skill – but it can be impractical and tiresome for patients to have to repeat their preferences at every interaction. A documented and shared record of people’s preferences would allow staff to enter conversations with patients with an understanding of them as individuals. This is particularly crucial where, as is increasingly the case, care needs to be coordinated across multiple professionals and providers.

This is why we support PRSB’s ‘About Me’ standard. It provides a platform for patients and service users to use their voice and share what matters most to them in their own words. Using this information, providers can create and share a powerful, portable and personalised record of individuals’ needs and preferences. The adoption of the About Me standard will also help providers access the types of information needed to be able to address many of the Picker Principles. For example, understanding how people prefer to communicate and receive information supports the principle of “clear information, communication, and support for self-care”, whilst recording ‘who [is] important to me’ encourages appropriate “involvement and support for family and carers”. We particularly welcome the standard’s focus on capturing the most important things that individuals want to be known about them: this is a true embodiment of person centredness.

We encourage all providers to adopt and use the About Me standard as part of their approach to care. Doing this will help elevate and amplify people’s individual voices in health and social care practice, support a better understanding of the things that matter most to them, and promote person centred care for all, always.

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Personalised care and support planning for people with severe mental illness

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.

Moving to a single holistic plan

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.