Mapping Parkinson’s Disease needs and services in Ireland to inform service planning

Research

A number of members have asked for an update on the Mapping Parkinson’s Disease project. Please see below the information that was shared with EOPD.ie.

In July 2017, the Health Research Board (HRB) was contacted by the Medical Council with a request for assistance in utilising funds from a bequest (€567,106.70) to support research into Parkinson’s Disease. The HRB Board agreed to provide additional co-funding to bring the overall funding for an open call to €750,000 and this issued in September 2017.

The overarching aim of the Patrick Quinn Awards for Parkinson’s Research scheme was to support high-quality applied research projects where academic researchers, knowledge users, and PPI contributors come together to focus on themes/questions developed in consultation with people affected by Parkinson’s. The focus of these health research projects was to improve health outcomes, as well as deliver benefits and improvements to the lives of people with Parkinson’s, their families, and carers in Ireland.

Following a competitive application and peer review process, the HRB co-funded two awards. The first is the project referenced in this question, full details of which can be found below. The second, which is entitled, “Examining the interplay of the immune system with brain cells in Parkinson’s disease”, led by Professor Maeve Caldwell in TCD, has a completion date of January 2024. As these projects were supported through a bequest and one is still underway, there are currently no plans to update these studies.

Reference PQA-2019-002

Title Mapping Parkinson’s Disease needs and services in Ireland to inform service planning

Lead Applicant Researcher Dr Suzanne Timmons, Centre for Gerontology and Rehabilitation, University College Cork

Lead Applicant Knowledge User Professor Orla Hardiman

Lead Applicant PPI Contributor Ms Paula Gilmore

Other Co-Applicants

  • Professor Tim Lynch
  • Dr Geraldine Foley
  • Dr Siobhan Fox
  • Professor Kathleen Bennett
  • Dr Diarmuid O’Shea
  • Mr Patrick Browne
  • Dr Eilis O’Reilly
  • Mr Tony Wilkinson


Host Institution University College Cork

Project Abstract: Although the National Clinical Programme (NCP) for Neurology’s Model of Care included a pathway for Parkinson’s Disease (PD), and the number of people with Parkinson’s (PwP’s) is increasing significantly annually (it will double globally from 2015 to 2040), services for PwP’s have not had any significant healthcare investment in recent years. Anecdotally, Irish PD services fall well below internationally recommended standards for staffing resources. This not only affects the quality of life of PwP’s, it also leads to avoidable hospital admissions, with high associated costs and morbidity. The Parkinson’s Association of Ireland has lobbied to improve PD services in Ireland. However, there is no reliable estimate of the current prevalence of PD in Ireland, and of either the services available to PwP’s or the quality/user-appraisal of these services.

This research project aims to support national and local PD service planning by three linked work packages. The first maps the prevalence of PD and service availability for PwP’s, across each of the nine Community Healthcare Organisation regions in Ireland, to highlight mismatches between population needs and service provision. The second develops quality indicators for Irish PD services and assesses existing services against these indicators, to demonstrate where extra resources (e.g. education/training, staff numbers or mix, etc) are needed to provide a quality service. The final work package explores the experience of PwP’s with respect to services they receive, and their priorities for service provision. The applicant team involves key stakeholders in the Health Service Executive (HSE), advocacy/support groups, and service users and providers.

Together, this data will support the Department of Health/HSE to plan future PD services in Ireland, on a region-by-region basis. It will support local PD services to improve the quality of their service and will support ongoing advocacy for health care that meets the needs of PwP’s in Ireland.

Timeline

The Project started at end 2019 and originally had a duration of 24 months. With Covid-related delays, the project concluded in Q3 2022. All fieldwork was completed at grant end date and work was underway to compile the results of the audit and to finalise the national reports and related infographics.

Outputs and knowledge translation

This is the link to the project webpage, where non-confidential outputs are housed, under easy-to-follow headings:

Work Package 1: Population needs and service availability


Work Package 2: Quality of services


Work Package 3: User Experience

Note:

  • The audit report based on using this tool in 10/14 clinics nationally in 2022/2023 is not yet signed off by the National Clinical Programme of Neurology (knowledge user) but will be made publicly available once finalised.
  • The national report is not yet finalised.


Pathway to impact:

  • Two policy briefs based on combined survey/interview data were presented by the Parkinson’s Association of Ireland (PAI) the Neurological Alliance of Ireland (NAI) at a meeting with my Department and other Government Ministers in June/July 2022.

https://www.ucc.ie/en/media/academic/anatomy/pdrc/MapPDPDNurseSpecialistpolicybrief26.06.22.pdf

https://www.ucc.ie/en/media/academic/anatomy/pdrc/MapPDHSCPpolicybrief22.06.22.pdf

https://www.ucc.ie/en/media/academic/anatomy/pdrc/PAINewsletter-Summer-2022.pdf

Facebook
Twitter
LinkedIn