Findings of first ever audit of Parkinson’s disease care in Ireland published

11 Apr 2024

• Significant delays between patient referral and their first clinic visit.
• Insufficient communication and information-sharing was evident.
• PD nurse specialists post are lacking nationwide.

On World Parkinson’s day (Thursday 11th April), the first ever national audit of Parkinson’s disease (PD) care in Ireland is published, showing both areas of good practice, along with many areas for improvement.

The aim of this audit is to provide information on how well Movement Disorder services in Ireland are delivering timely, responsive and patient centred multi-disciplinary care to patients who have Parkinson’s disease. 11 clinics across Ireland that provide Parkinson’s disease care were involved in the audit, with patient cases assessed to examine the type of care provided to those who have Parkinson’s disease.

The audit was led by Principal Investigator, Professor Suzanne Timmons (Consultant Geriatrician),at the Centre for Gerontology and Rehabilitation in University College Cork (UCC). Project partners include the National Clinical Programmes for Neurology and Older Persons, as well as Parkinson’s Ireland. The audit was performed as part of a HRB-funded project endowed by a generous bequest from Patrick Quinn.

The audit found:

Evidence of Good Practice

• Very clear documentation of current PD medications in patient healthcare records.
• Regular assessments of motor symptoms and mobility are conducted for the majority of patients.

Areas for Improvement

• There are significant delays between patient referral and their first clinic visit - less than one-third of patients are seen within 6 months.
• Insufficient communication and information-sharing was evident, especially at the time of diagnosis.
• PD nurse specialists post are lacking nationwide, with most located in Dublin.
• Multidisciplinary access was poor, especially dietetics and social work. There was evidence of unmet psychological needs, with psychology input mainly confined to a small number of cases attending neurology-led clinics.
• There is significant variability across services for many assessments.
• Poor attention to the management of bone health.
  • Blood pressure and nutritional status assessment were insufficiently recorded in neurology-led services.
  • Cognition, pain, fatigue, and saliva management were poorly recorded generally, with fatigue insufficiently assessed in geriatric-led clinics especially.
  • Under-use of appropriate standardised assessments (i.e., cognition, mobility, and activities of daily living).
  • Low rates of documented discussions on the non-medical management of PD symptoms (other than physical activity), with insufficient focus on areas such as self-management, sleep or mood.
  • Poor documentation of advance care planning.

UCC Professor Suzanne Timmons (principal investigator) said:

"International PD care guidelines indicate holistic, multidisciplinary PD care as the gold standard and we have measured how care in Ireland stacks up to those benchmarks. Medical management of motor symptoms is one of our strengths in Ireland. However, it is clear that our PD services are stretched, and without a sufficient number of nurse specialist posts and access to a range of PD-trained health and social care professionals, it simply wont be feasible to improve the non-medical management of PD care."

Professor David Bradley, Clinical lead for PD services at St James’s Hospital and joint national specialty director for Neurology training, said:

"People with PD need lifelong access to a comprehensive suite of specialist services. This important audit provides insight into the Irish situation. It is notable that 8% of patients were under 60 (low vs international estimates); early-onset patients have specific occupational, family, and reproductive health needs. There is a clear need to improve access to PD nurse specialists and multidisciplinary therapy services. Given predicted increases in disease prevalence, and evolution towards advanced diagnostics and disease-modifying therapies, we need to train increasing numbers of medical specialists."

Professor Graham Hughes, Clinical Lead HSE/RCPI National Clinical Programme for Older People and Consultant Geriatrician at St Vincent's University Hospital, Dublin said:

"I wish to congratulate Prof Timmons, Dr O'Shea and the research team at UCC for undertaking this important work. UCC have a proven track record in promoting improvements in care for people with Parkinsons disease in Ireland. The results of the survey shine a light on how services can improve against quality standards. It is our responsibility to work in a more integrated way so that people with Parkinsons have confidence we can work with them to meet their healthcare needs.  It also articulates the resources required across the healthcare professional group in order to confidently deliver the vision of Slaintecare - the right care in the right place at the right time."