Widespread deficits in Parkinson’s disease care in Ireland, according to survey

Recent data published by University College Cork (UCC) have highlighted an array of unmet needs among people suffering from Parkinson’s disease (PD) in Ireland, despite a notably growing prevalence of the condition in recent years. A total of 1,402 people affected by PD participated in the cross-sectional survey that aimed to explore PD patients’ experiences of service access, availability, and utilisation.

Researchers uncovered high rates of delayed diagnosis, infrequent follow-up, poor access to multidisciplinary support, and several other negative experiences among respondents. The national survey was co-led by Prof Suzanne Timmons and Dr Emma O’Shea, from the Centre for Gerontology and Rehabilitation, UCC, and is part of a wider project to understand more about the needs of patients with PD and their families.

“Our survey had a tremendous response from people living with Parkinson’s disease across the country,” Dr O’Shea told Update. “These findings are nationally representative.”

The team gathered information on sociodemographic characteristics; experiences of health service access; diagnosis; medical management; multidisciplinary input; and perspectives on improving PD care. All of the respondents were adults that had a diagnosis of PD, and were ordinarily resident in Ireland.

Summary of findings

The survey findings showed that one-in-five respondents said that diagnosis was delayed by more than 12 months, with those in the private system more likely to be diagnosed within three months than those in the public sector. Most respondents had been diagnosed by neurologists (84 per cent), with GPs (8 per cent) and geriatricians (7 per cent) diagnosing the vast majority of the remaining participants. Around 22 per cent reported that the way in which diagnosis was relayed was unacceptable, and those diagnosed by geriatricians were most likely to report acceptable disclosure.

A total of 43 per cent of respondents only attended a consultant either once per year or less. Over one-third of privately diagnosed patients transitioned to the public healthcare system for ongoing care following diagnosis, however, those that continued to attend a private consultant were seen significantly more frequently. Perceived care quality was largely positive among respondents, with the majority reporting they had enough time with their doctor, that they felt involved in decision-making and listened to during consultations. Those with early onset PD and those in the public sector were less likely to report positive experiences than those attending private care. Findings also suggest that psychological symptoms such as anxiety and depression are not well managed. A total of 97 per cent of respondents were taking PD medications, however, just over half felt they were effective.

A lack of access to multidisciplinary professionals, such as PD nurse specialists and social care, was a primary theme uncovered by the study. Those in the public system were more likely to have access to a PD nurse, speech and language therapy, and occupational therapy than private patients. Overall, participants in rural areas were more underserved than those in urban areas.

Commenting on the results, Dr O’Shea said: “The findings clearly illustrate deficits in terms of service provision and capacity, which people with PD experience via lengthy waiting times for initial and follow-up visits, non-holistic care, and lack of access to the range of multidisciplinary services, including PD nurse specialists. We know that psychosocial needs in particular are not well probed or managed, which is unsurprising given the especially poor levels of access to PD nurse specialists, psychology and/or social work.”

Recommendations from the research team include a reconfigured model of PD care to accommodate the growing need for specialist, integrated care, as well as more PD nurse specialists.

“Senior decision-makers within the Department of Health and HSE need to plan future service provision, taking into account the current level of unmet need, as well as the impending surge in PD prevalence,” Dr O’Shea added.