A qualitative investigation of the Bristol Parkinson’s Disease Hub
Research type
Research Study
Full title
A qualitative investigation of a novel Parkinson’s Disease Hub: an integrated multidisciplinary service for patients with Parkinson’s and related disorders with rapidly declining condition or unmet palliative needs
IRAS ID
328748
Contact name
Elisabeth (Lis) Grey
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 4 months, 27 days
Research summary
Standard NHS care for people with Parkinson’s disease (PD) has been criticised for detecting worsening condition too late. This can result in patients having to go to hospital for long stays when, had they been seen by a specialist sooner, their condition would not have become so bad as to need in-patient hospital care. A new service in North Bristol NHS Trust – the PD Hub - aims to ensure that people with PD whose condition rapidly gets worse are seen quickly by specialists and receive appropriate treatment, so that they do not need to be admitted to hospital.
People with rapidly worsening symptoms are referred to the Hub and seen within a week. Each patient is discussed by a multidisciplinary team (MDT), who make a treatment plan that is then started immediately. Having input from different specialists in the MDT can help to ensure that the complex symptoms of each patient are appropriately treated. Patients are able to stay at home and their cases are reviewed four weeks later.
There is a risk that some people may miss out on the Hub if they are less able to ask for help. This is a particular concern for the high proportion of the Parkinson’s population who also have mild cognitive impairment (MCI) or dementia (approx. 60% of PD population), as well as people from minority ethnic communities.
This study aims to understand how the PD Hub is experienced by people with PD, their informal carers and service providers. We will conduct interviews and observations of the Hub to look at how it delivers care to people with PD, PD-dementia (PDD) and PD-MCI, and the barriers and facilitators to this. The findings from this study will inform recommendations for future integrated care for PD and other neurodegenerative disorders.REC name
London - Harrow Research Ethics Committee
REC reference
23/LO/0775
Date of REC Opinion
30 Oct 2023
REC opinion
Further Information Favourable Opinion