The practice of involving service users with mental health needs in the improvement and planning of services is well developed nationally and also locally within Sheffield Health and Social Care NHS Foundation Trust (SHSC). A number of forums and methods of engaging people with mental health needs and learning disabilities in a range of ways as become established; the same cannot be said for the involvement of people who have dementia.
The recognition that people with dementia should receive the same rights of involvement is reflected through policy and literature; considerable guidance on the processes and methods through which this aim might be achieved is reported. The reality remains that people with dementia, particularly more frail people with more advanced dementia are still largely excluded from the ‘service user involvement’ agenda (Thornton 2000; Cantleyet al. 2005). This is perhaps not out of a wish to exclude but more out of lack of understanding how best to include. It is unclear the precise range of ways that people with dementia are involved in a range of ways in SHSC, in other Trusts in Sheffield and at a City Wide level.
Aim and Objectives
To explore and enhance the processes and the range of methods by which people who have dementia may be involved with service improvement and planning within SHSC. More specifically the project will seek to:
- Interrogate evidence on the involvement of people who have dementia in health and social care service improvement and planning.
- Undertake this work in collaboration with people who have dementia, their family carers and key stakeholders across SHSC and Sheffield.
- Map out current involvement of people who have dementia across a matrix of involvement types and involvement levels within SHSC services and Governance systems. Look for examples of good practice.
- Establish what good practices exist within Sheffield beyond SHSC.
- Make recommendations based on the literature search and mapping exercise for relevant processes to be implemented to enhance the involvement of people who have dementia
- Disseminate learning across the CLAHRC partnership organisations and to facilitate its uptake into undergraduate nursing, medical, allied health professional curricula and continuing professional development.
Approach and Evaluation of Process and Outcomes
A participatory and reflexive approach will be taken to the implementation of this project. The knowledge to action cycle (Graham et al 2006) will guide the project process. A multi-faceted approach to evaluation will be used to consider both the process of development and staff, patient and team outcomes arising from the development.
The evaluation comprises several phases. These are:
- Identification of the key stakeholders including people who have dementia and their carers
- Scoping of current involvement activities across the City in order to:
- Establish a baseline of current practice
- Identify good practice and initiative
- Identify gaps
- Identify potential barriers
- Begin to raise awareness of involving people with dementia
- Contact with organisations who are known for involving people who have dementia across the UK
- Share scoping findings with stakeholder, including people who have dementia from existing forums, for example, Alzheimer’s Society; SHSC Memory Services; City Wide dementia Cafés; Darnall Dementia Group
- Recommending a range of processes, methods and products or ‘tools’ following analysis of literature, scoping and good practice
- Trialling one of these methods and evaluating its implementation
- Evaluating the project
- Disseminating the findings
The 18 month project will be completed by August 2013.