Objective: To conduct a nationwide online survey of Parkinson’s disease nurse specialists (PDNS) and Parkinson’s UK information staff to gain insight into current models of care and understand their experiences of people with Parkinson’s in care homes.

Background: An estimated 18,000 people with Parkinson’s disease (PD) live in a care home in the UK. People with PD (PwP), who enter a care home are known to have poor outcomes and may be underserved by existing care models. Within our service, community follow up of a PwP in a care home is often performed by the PDNS, but other models of service delivery exist. We believe that other Parkinson’s teams/services in the UK may have alternative ways of managing PwP in care homes, yet this experience is not widely shared.

Methods: As part of the Care Needs Project online surveys were developed following focus groups with PDNS and Parkinson’s UK staff. The PDNS survey was distributed via Parkinson’s UK and the PDNS Association to all known PDNS in the UK. Parkinson’s UK distributed a survey to all appropriate staff.

Results: Preliminary analysis of 227 responses (158 PDNS, 69 Parkinson’s UK) was conducted. Over 95% of PDNS did not discharge PwP when they moved into a care home. Each PDNS typically covered 20-40 different care homes, with average of 2-3 PwP per home. 84% of PDNS were able to review PwP in their care home (51% reviewing 6 monthly and 21% only as required) and 11% reviewed the PwP via the phone. Multiple barriers to managing this group of PwP were also identified along with some good examples of practice. 28% of Parkinson’s UK staff often/frequently spoke to someone who had never received support, and 15% had often spoken to someone who no longer received support from a PD specialist service. 38% often or frequently had requests to recommend care homes but were unable to do this. The use of individualised care plans, greater access to therapy services and signposting for social care was recommended to improve care quality.

Conclusions: Although many PDNS reported that they did not discharge PwP when they went into a care home setting there are still large numbers of PwP who do not receive support from a specialist service. Multiple barriers to managing this group of PwP were identified with no clear standard model of care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/are-people-with-parkinsons-disease-living-in-care-homes-in-the-uk-underserved-identifying-models-of-care-and-barriers-to-care-access/