About me case study – Mike’s story

About Me - Mike's story

This case study focuses on a 32-year-old Mike, diagnosed with autism and a learning disability. In 2022, Mike moved into his own bespoke home from a secure inpatient hospital where he had spent 9 years of his life. Havencare worked with his family and local authority to plan his move, find suitable accommodation with bespoke adaptions for Mike to live safely.

Using the About Me Standard via Multi Me WIKI to share timely information on how to best support Mike was key to meeting his needs and providing him with the best care experience possible.

Multi Me is a secure online platform for individuals with disabilities and the circle of people that support them in their daily lives. They have achieved conformance with ‘About Me’, which shows their commitment to standards excellence and robust information sharing, resulting in better health and care outcomes for people.

On this page

The challenge

Mike carries significant trauma from his extended stay in a secure environment where there was high use of physical interventions and very limited human interactions. 

If Mike needs to interact with unfamiliar people (especially involving physical touch) or engage in things he does not understand or be in unpredictable environments, he can become highly distressed, resulting in harming himself, others, and property.

In 2024, Mike moved to his own bespoke home and is supported 24/7 by Havencare staff. His support team started to notice that Mike was displaying signs that could be related to pain and distress, and they needed this to be further investigated. There were serious concerns that Mike could become distressed and retraumatised if he needed to visit a hospital or engage with hospital staff.

Man with learning disabilities in session with his carer

The solution - 'About Me'

Stock image of man and his carer outside

The PRSB’s About Me Standard includes most important details that a person wants to share with professionals in health and social care. This information might include how best to communicate with the person, how to help them feel at ease or details about how they like to take their medication. 

It is intended to be generic and apply to everyone, from those who have complex care and support needs to those who rarely require care and/or support. Using ‘About Me’ information has been shown to achieve huge benefits for people including supporting them through hospital appointments or other care which might not have been possible or resulted in adverse outcomes without understanding key ways to work with the person.

The process

Visual aids
Planning
Mike’s Havencare team planned how best to support him to hospital for health investigations. This involved collaborating with his Multi-Disciplinary Team (MDT), which included the Intensive Assessment and Treatment Team, a senior nurse practitioner, psychiatrist, GP, occupational therapist, and his family.

The information in the ‘About Me’ section of his support plan (Multi Me WIKI) helped with essential planning for his hospital appointment. Wikis are accessible, and easy to build personal websites. They can be used to create multimedia person-centred plans that use pictures, words, video and sound to capture the aspirations and needs of the individual.
Information sharing
Mike needed visual aids and social stories explaining the process of the appointment and expectation of procedures. His ‘About Me’ information was shared with the hospital team which enabled informed reasonable adjustments to be made. As a result of this information being shared in advance, the hospital arranged for the use of a separate room to reduce the potential for unpredictability.
Improving Mike’s care
The ‘About Me’ information enabled hospital staff to be prepared, in advance, on how best to communicate with Mike.

This included information such as what is important to him, what he likes and is interested in (to help calming with predictable conversations about familiar interests), what potential triggers of distress might be and how to avoid these.
The results
Mike successfully attended his appointment early May 2024 without any incident. This would have historically never been thought possible without sedation and a general anaesthetic.

Feedback

“Re-traumatisation can easily happen in health and social care as people are not treated with individuality or understanding of their lived experience. In Mike’s case, it is reasonable to assume that without shared 'About Me' information in Multi Me, there would have been delays and miscommunication that would have caused distress and the potential for serious incidents. I believe the PRSB's About Me Standard humanises people’s interactions with the system, offering the potential to raise the equality of access to better health outcomes for all people”.
Phil Morris
Phil Morris
Chief Executive, Havencare Homes and Support
"It has been an incredibly positive experience working with Havencare to implement the PRSB About Me Standard. Utilising a template that adheres to the 'About Me' implementation guidelines is an excellent method for gathering truly person-centred data. This approach significantly enhances the quality of care and support provided to those under Havencare's services. Multi ME, in collaboration with our partners at RIX Inclusive Research, is proud to be part of the PRSB's Standards Partnership Scheme, and we look forward to continuing our efforts to improve care standards.”
Charlie Levinson, CEO
Charlie Levinson
CEO, MULTI ME

Resources

The About Me Standard
View the full standard and supporting documentation, examples and other resources.

Conformant partners
Find out which of our PRSB Partners have successfully achieved conformance against the About Me Standard.

Support services
Proactive support for our standards and ongoing maintenance and release management of published standards. 

“If someone’s been working for a period of time, in a form of therapy, for instance, where there’s an agreed plan for the locality when they may present in an emergency situation … then it’s really important for us to be able to see that that information and be able to act appropriately according to that because, you know, there isn’t and there shouldn’t be a stock response to that. These plans are designed to be individualised and personalised.  All services should be giving that personalised approach to care wherever possible. And a standard such as [PCSP standard] definitely moves us closer towards being able to do that. [Not acting on agreed plans] is a key finding in terms of emergency responses over the years where responses have been inappropriate.” – Mental Health Nurse

“Following a particular plan that’s been put into place will result in much better outcomes and prevent the sort of poor outcome which would otherwise be leading to an unplanned hospital admission.” – General Practitioner

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.

Successful teams have the functional skills to lead a task, benefit from diversity, and are led in a way that creates time and space for reflection; the ability to take stock periodically, of the task and of the way in which the team is engaged in delivering it. Your stakeholder analysis [HYPERLINK] should help you assemble the most appropriate team and identify how the team interacts and relates to other stakeholders like sponsors, services users, etc.

The variation in the size, both in terms of population served and numbers of constituent organisations, and of complexity, between Integrated Care Systems, precludes the possibility of any prescriptive guidance on the way in which this team is assembled.

Engeström’s expansive learning cycle of learning actions explains how there are 7 stages of learning actions;