About this toolkit

Palliative and End of Life Care
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About this toolkit

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End-of-Life-Getting to grips with the standard

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Getting people on board

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Taking stock and planning

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Putting the standard into practice

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Shared resources and learning

About this toolkit

This toolkit is to help local health and care systems implement the PRSB (Professional Record Standards Body) Palliative and End of Life Care Information Standard so that people get the best care at the end of their life. The standard will ensure that individuals are at the heart of important decision making and that the right information is available to the health and care professionals who need it, making it easier for everyone involved in a person’s care.

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The standard has been developed alongside patients, carers, families and health and care professionals

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The standard represents best practice and is endorsed by key professional bodies.

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The standard is for use across the whole of the United Kingdom

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The standard can be embedded into any care record system.

This toolkit will help with:

  • Clinical user experience (what information should be collected)
  • Information modelling for incorporating into local systems design
  • Interoperability and sharing of data with other settings and systems
  • Building support and engagement with local staff who will be affected by the change. 

This toolkit is for:

Health and care professionals

Transformation
 leads

Commissioners

Project and programme managers

Digital leaders such as CIO’s, CCIO’s, and CNIO’s

 

System suppliers

Technical staff

Information and data quality champions

The toolkit is divided into sections that address each stage of the change management process needed to adopt standards. 

It is intended to help all professionals, whatever their role in digital transformation. However, depending on your role in the change management process you may find certain sections more relevant to your needs. 

It is vital to remember that successful change programmes often require several iterations of the sections in this toolkit. These stages are the lifecycle of a standard adoption programme from the first iteration through to completion and can be repeated at any point in your implementation programme.

The sections in the toolkit are:

Getting to grips with the standard

Describes the standard, how and when to use it . This section is useful for health and care professionals, commissioners, transformation managers and leaders, technical staff and IT leads as well as system suppliers.

Getting people on board

Sets out how to create a vision, enlist leaders and build a team to deliver change and its benefits. Transformation managers, project managers, digital leaders and champions may find this section particularly useful.

Taking stock and planning

Describes how to baseline the current position and design a roadmap for the change programme. This section is particularly relevant to project managers, transformation managers, commissioners, technical staff and digital leaders and champions, though others may also find it useful.

Putting the standard into practice

Sets out how to commission the changes, address training needs, ensure standards meet safety requirements and plan an evaluation programme. This section is useful for commissioners, transformation and project managers, as well as health and care professionals, digital leaders and champions.

Shared learning and resources

Will feature case studies, lessons learned, resources, links and details of how to join communities of interest. Users could include anyone involved in the change management project.

Before you start

Before you get started you may want to read our Standards explainer which describes what information record standards are, why they are needed, and how they support better care.

  • Standards explained
    The Standards explainer describes what information record standards are, why they are needed, and how they support better care.

 

Successful transformational change

To succeed transformation, programmes need to be built on strong foundations with clear goals in mind, the right leadership and an engaged coalition of staff and stakeholders. Done well, they result in new, more efficient and effective ways of working that deliver better services and care. As such they require planning, committed leaders and project management.

If you’re adopting this standard it may be useful to think of doing so in terms of a change management approach. This toolkit presumes that your organisation and partners in the local health and care economy will have processes and people in place who can support the change management programme. To get you started, you may find our information on transformational change useful.

 

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About this toolkit
What does it include?
How to use the toolkit
Before you start

PRSB Standards Explained

Why we need standards to record our health and care information in a consistent way so that it can be made available whenever it is needed.

Read More

Making change happen

Transformation programmes need clear goals, the right leadership and engaged staff and stakeholders. Get started by reading our information on transformational change.

Read More

PRSB Support Available

If you have a question for PRSB, please contact our support team. We have an expert team who can help you find the answer, or direct you to the right place.

Read More

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.