Andy Woodhead is a lecturer, former lawyer, and is living with dementia. Andy is a Dementia Voice for a number of organisations, helping raise awareness of his experience of living with dementia. Andy is a committee member of the PCRS.
Working together with people who have lived experience of a terminal illness, their carers and supporters, and building cross-boundary relationships to deliver integrated, effective care, is vital to successful research. Their perspectives offer valuable insights that would otherwise be unavailable. I have personally been involved with and co-authored many research projects published internationally on subjects such as dementia, patient-centred care, community health services, allied health care, and palliative care, providing insights based on my lived experience.
Most importantly, when working with colleagues who are carrying out research in their field of expertise, I engage as an equal partner in my role as a Patient and Public Involvement (PPI) member of the research community.
Lived Experience in Practice: Why It is Important
One personal example is my involvement working in a research group looking at the value of PPI and coproduction in improving the Welsh Government’s Dementia Care Pathway, which sets standards for dementia care from early diagnosis to the end of life.
People living with dementia and their carers are the experts in their care. Scoping work in developing the framework has shown that there are excellent examples of coproduction within Allied Health Professional (AHP) teams and services happening across Wales, with some highlighted in this framework. Robust and meaningful coproduction means that services meet the real needs of the community that they support, based on users’ experiences of ‘what good care looks like.’ Many AHPs told us that although they have been keen to engage in coproduction with people with lived experience of dementia, they feel that they do not yet have the skills or resources to do so meaningfully. AHPs have shown a strong desire to develop these skills and move beyond tokenistic engagement toward equal partnerships.
“Nothing about us without us” encapsulates the need for services to authentically include the voice of people living with dementia in every aspect of service design and delivery. People living with dementia should be involved in decision-making about their care and placed at the centre of the work that AHPs carry out, with services tailored to their individual needs. If a person cannot engage in making choices independently, a carer or supporter, relative or someone who knows the person well should be consulted as an expert in their care. Efforts should also be made to include people with more advanced dementia using creative methods, for example, non-verbal communication.
To deliver holistic and effective care that is tailored to the person, AHPs must work in integrated, multi-agency teams. People living with dementia, together with clinicians, told us that there is too often a disconnect between services across health, social care and third sector organisations. This causes delays in accessing help, breakdowns in communication, and a lack of accountability and organisation in a person’s care.
The PPI involvement in this Research and Evaluation Study resulted in a ‘Call to Action’:
1) All AHPs should cultivate authentic, reciprocal relationships with people living with dementia and their carers and supporters to learn and understand ‘what good coproduction looks like.’ This now happens in local spaces as well as through national organisations, ensuring the ‘dementia voice’ is heard in service design, delivery and evaluation.
2) The AHP Dementia Network for Wales now collates and develops resources and guides outlining principles and practical steps for coproduction with people living with dementia, and their carers and supporters. Quarterly AHP Dementia Network meetings now provide a forum to share best practices and examples of effective coproduction in service and intervention development.
3) Relationships between local, regional and national services have been strengthened to ensure AHP care and support are integrated and collaborative.
4) Resources to support meaningful coproduction have been developed and shared by the AHP Dementia Network for Wales.
This is just one example of how PPI input and lived experience are just as important as any other datasets, such as scientific, clinical and social data, in carrying out research. As funders increasingly look for evidence of meaningful PPI and coproduction in research proposals, we must continue to embed meaningful PPI at every stage of research.
Links to further research with examples of essential & successful PPI and Coproduction:
Title: Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales
Research Report (Published & funded by Marie Curie)
Authors: Therese Johansson, Sophie Pask, Joanna Goodrich, Lucy Budd, Ikumi Okamoto, Rashmi Kumar, Lynn Laidlaw, Cara Ghiglieri, Andy Woodhead, Rachel L Chambers, Joanna Davies, Anna E Bone, Irene J Higginson, Stephen Barclay, Fliss E M Murtagh, Katherine E Sleeman
Title: Telephone advice lines available out-of-hours to people with palliative and end-of-life care needs: A qualitative interview study with professionals and development of a practical framework to improve services (Published in Journal of Palliative Care 2024)
Authors: Sophie Pask, Allen Omoruyi, Ahmed Mohamed, Rachel L. Chambers, Phillippa G. McFarlane, Therese Johansson, Rashmi Kumar, Andy Woodhead, Ikumi Okamoto, Stephen Barclay, Irene J. Higginson, Katherine E. Sleeman, and Fliss E. M. Murtagh
You can follow Andy on LinkedIn. The Palliative Care Research Society was set up to provide a forum for palliative care research and to enable researchers to learn from each other to promote high-quality research. Visit pcrs.org.uk to find out more.