Recent Survey Highlights Gaps in Services for People with Parkinson’s

Overview: The Neurological Alliance of Ireland (NAI) commissioned a survey in 2024 of people living with neurological conditions across the country. Parkinson’s Ireland (PI) has analysed the Parkinson’s specific results in the survey.   

Symptoms: Respondents were asked what symptoms they frequently experience due to their neurological condition. People living with Parkinson’s reported a wide variety of symptoms, including tremor, bladder and bowel issues, hearing and vision impairment, and difficulty eating and swallowing. Four symptoms stood out as having the biggest impact: pain, insomnia (sleeping difficulties), fatigue, and cognitive issues (thinking and memory problems).  

Parkinson’s Ireland has a wide variety of resources available to support people living with Parkinson’s and their families for each of the over 40 symptoms associated with the condition. These are available on our website as pdf files, or you can call 1800 359 359 and we can post a physical copy to you. Additionally, we have three Parkinson’s specialist nurses who you can organise a call-back with if you would like support in navigating any symptoms. To schedule a call back, you can also call our helpline number on 1800 359 359.  

Neurologists: The survey asked respondents about their experience with numerous medical services. 66% of people with Parkinson’s reported that their experience with a Neurologist met their needs, with 1 in 4 saying that it did not. A further 8% reported that they could not access a neurologist.  

In a very worrying statistic, 59% of respondents had to wait more than one year for a diagnosis after symptom onset. Additional neurologists in regional hospitals is a key ask in the PI 2026 pre-budget submission. It is also clear that for many years, Ireland has been towards the bottom of the table in the EU with the number of neurologists per 100,000 people. This needs to change urgently, as the number of people with Parkinson’s is expected to double by 2050 according to the British Medical Journal. 

Dietitian: 43% of people had a positive experience when engaging with a dietician regarding Parkinson’s. Worryingly, 55% of people could not access a dietician. 

Parkinson’s Ireland has a dedicated dietician callback service. Our Dietician, Richelle Flanagan, operates the dietician callback service on a part-time basis. Richelle is a registered dietician who lives with Parkinson’s, and she can talk you through any queries you may have regarding diet, health, and nutrition. You can call 1800 359 359 to schedule a call back for you or your loved one. We also updated our ‘Eating Well with Parkinson’s Disease’ booklet, which was written alongside Richelle and the Irish Nutrition and Dietetic Institute. Please click here to download the PDF version or call 1800 359359 and we can post a physical copy to you.  

Counselling: Almost 3 out of 4 people with Parkinson’s could not access a counselling service, and of the 27% who did, 1 in 3 reported that it did not meet their needs. In our Pre-Budget 2026 Submission, Parkinsons Ireland are requesting state funding to set up a dedicated counselling service in 2026. We will continue to update our members in our weekly newsletter on our progress towards this goal. This request is further backed up by the fact that three quarters of respondents said that having Parkinson’s has an impact on their mental health.  

Mental health also emerged as a key area of concern in the full survey across all conditions. There is a lack of awareness of the prevalence and burden of mental health challenges for people with neurological conditions and their care partners. The important conclusion is that mental health care should be integrated as a core component of neurological care, rather than treating it as an add-on

Services in hospitals: The survey also explored the use of hospital services among people with Parkinson’s and found that 3 in 4 people had a planned hospital visit in the last 12 months, while a further third of people had an emergency visit. Parkinson’s Ireland is continuously advocating for better quality services for those with the condition and their families to ensure that no matter the situation, people with Parkinsons can receive the care they require.  

Parkinson’s Ireland will be sharing further insights into the results from the survey in our newsletter, which is sent to our members on a weekly basis. Parkinson’s Ireland would like to thank the NAI for commissioning the survey and for providing us with Parkinson’s disease specific results for our own research and advocacy. PI will also be issuing a survey to its own members and service users over the coming months. 

This information, which arises from the lived experience of people with neurological conditions and their care partners, provides a valuable evidence base to inform our work and our advocacy efforts.