Improving post-diagnostic support
Optimising post-diagnostic support and service delivery for person-centred, co-ordinated care for people living with dementia and neurodegenerative conditions from diagnosis to end of life
What are we trying to find out?
Once someone is diagnosed with a neurodegenerative condition, they will need different types of services and support to enable them to have a good quality of life. This is called post-diagnostic support. What people want or need from post-diagnostic support changes over time. We want to understand three things:
- What do national policy and practice guidelines recommend is offered in terms of post-diagnostic support for dementia and neurodegenerative conditions, from diagnosis through to end of life?
- How could we add to these recommendations by i) sharing learning between conditions, and ii) considering specific ways of working such as care co-ordination and case management?
- What do people living with (or supporting people who live with) dementia or a neurodegenerative condition think about what evidence suggests are the best models for post-diagnostic care and services?
Why is this important?
Everybody should be supported to live with dementia or a long-term neurodegenerative condition, but this support is not always designed for the best experience. The NHS emphasises that people living with these conditions should receive person-centred, joined-up care from diagnosis to end of life and as close to their homes as possible. Sharing good practice of how to integrate community care across different conditions could help reduce hospital admissions and A&E attendance, and improve a person’s lived experience.
People’s care should be evidence-based and follow National Institute of Health and Care Excellence (NICE) guidelines. However, NICE guidelines focus on a single condition and there can be long intervals between updates. NICE guidelines on post-diagnostic support vary between conditions. While this may be reasonable in view of the different characteristics of the conditions, there may be aspects of good practice for one condition which could be useful across others. A named lead professional to help co-ordinate care is recommended for dementia, but specialist multidisciplinary clinics for Motor Neurone Disease (MND). There is as yet no NICE guideline for Huntington’s Disease.
Recent research shows that despite national recommendations, people have very different experiences of post-diagnostic support. We need to reduce these inequalities and ensure that everyone has the same experience, regardless of their age, sex, ethnicity or where they live.
How are we going to do it?
- Scoping search: We will explore the evidence that already exists in policy documents and clinical guidelines to understand what the current recommendations for post-diagnostic care and support for people living with dementia and neurodegenerative conditions.
- Patient, public and professional involvement (coproduction): At key stages, for example completion of 1) above, we will explore the views of people living with dementia and neurodegenerative conditions, their family carers and professionals. We will do this using workshops where we share key evidence and project findings, to find out peoples’ views on our findings to date and their thoughts on future work. This will be repeated throughout the project to ensure recommendations are co-produced.
- Additional evidence searches: We will further analyse the information gathered, and seek additional information if needed, for example focusing on the clinical and cost effectiveness of different models of care. We will use all our findings to develop methods to identify the best model(s) of post-diagnostic care and support. We will focus on both what the data and people’s experiences tell us about how well these models work and how possible it is to introduce them.
Who is involved?
Professor Louise Robinson (Newcastle University) is leading the project, alongside colleagues Professor Martin Knapp (LSE) and Professor Linda Clare (University of Exeter). This project will involve collaborators from DeNPRU QMUL: Dr Karen Harrison Dening (Dementia UK) and Professor Greta Rait (UCL).
There will be two experts by experience as part of the project team. They will link the project with our broader Involvement Network.
How will we share our findings?
We will
- Prepare a report and a policy brief
- Prepare condition-specific reports in partnership with organisations like Parkinson’s UK
- Present the findings in a webinar
- Provide key findings in an accessible format for different stakeholder groups
- Publish scientific journal articles.