- 1140 people living with Parkinson’s in Ireland responded to this survey, representing one of the largest single surveys of its kind ever carried out in this country
- 65% of respondents with Parkinson’s disease were over 65 years of age, coming from the most rapidly growing demographic in the country, which expected to triple in size by 2046
- 32% of all respondents had been hospitalised in the past 12 months and of these 34% had difficulty getting their medication on time and 23% felt their condition was adversely affected as a result of this
- Less than half of all respondents are seen twice yearly by their specialist. The study identifies the need for immediate planning to deal with current and future challenges in management of this increasingly common neurodegenerative disorder
- Just 3% had received treatment with deep brain stimulation through referral abroad to other centres. Results obtained would suggest that up to 200 additional patients nationwide may benefit from this and other advanced therapies in Parkinson’s disease.
April 12th 2016. A nationwide observational study carried out by a team in Tallaght Hospital under the leadership of Consultant Neurologist Dr Richard Walsh has provided important insights into the experiences of people with Parkinson’s disease in Ireland. The study was performed with the assistance of the two largest support groups for Parkinson’s disease in the country, the Parkinson’s Association of Ireland and Move4Parkinsons. The findings of the survey-based study, “Treating Parkinson’s 2015”, are being released to coincide with Parkinson’s Awareness week.
Parkinson’s disease is the second most common neurodegenerative disorder after Alzheimer’s disease, and will account for an increasing proportion of health expenditure over the next 20 years as the changing age profile of the Irish population gives rise to a doubling of the numbers affected from over 9,000 to approximately 20,000. The principal aim of the survey was to determine how successful we are when it comes to the management of disability in Parkinson’s disease with current therapies and to identify the quality of life currently experienced by people of all ages living with the disease.
As predicted for a condition associated with advancing years, 65% of those who responded were older than 65, a rapidly growing age group in Ireland as what has been a largely younger population grows older. Furthermore, 12% of respondents were over 80 years of age, reflecting improvements in life expectancy which is another important factor that will give rise to greater numbers living with Parkinson’s disease. 22% of respondents reported that they had to retire early or were unable to work because of their Parkinson’s disease, however, 18% were still at work, either in the home caring for family or outside the home.
Significantly, 32%of the 1140 respondents had been admitted to hospital over the previous 12 month period, a quarter of whom felt their condition was adversely affected by difficulty receiving their time-critical medication in the way it is prescribed. 20% of respondents admitted to missing a dose of medication every week while at home, and 5% missed a dose every day.
Only 17% of those hospitalised met a Parkinson’s disease nurse specialist during their hospital stay, missing an opportunity to improve medication adherence in hospital and at home. Less than half met a neurologist or geriatrician while in hospital, highlighting key deficits in specialist staffing in our hospitals.
Of further concern was that 29% of respondents had a fall in the previous 30 days, a hallmark of advancing disease and important source of morbidity including hip fractures and head injuries. 15% had fallen more than once in that period of time. 42% of those responding had relied on a carer in the previous 12 months. Despite this significant reported disability, less than half of those surveyed reported that they are being seen by their specialist in an outpatient’s clinic every six months or less in accordance with international best practice
Just 3% of respondents had been treated with deep brain stimulation, a surgical approach for advanced Parkinson’s disease. If the study findings are generalised to the whole population it suggest that as many as 200 patients being treated with oral medication in Ireland could be eligible for deep brain stimulation or other advanced therapies to improve their mobility and quality of life. Deep brain stimulation is not currently available in the Republic of Ireland and for which patients must travel to the UK. This finding reflects a general under-utilisation of this well-established technology and further emphasises the importance of improving access to specialist Parkinson’s disease clinics.
Responding to the publication of his findings, Dr Richard Walsh, Consultant Neurologist at Tallaght Hospital said: “Parkinson’s is not rare and most people will have experience of an affected relative or friend. Treating Parkinson’s 2015 has provided us with a huge amount of data about our successes and failures in the management of this complex and challenging disease. I have to thank the enormous effort from the people with Parkinson’s and their carers who contributed to make the study a success. The results indicate that for some people with Parkinson’s Disease in Ireland day-to-day function is adequate and allows a good quality of life. There are some findings however that demonstrate room for improvement, particularly around access to specialty care, hospitalisation and advanced therapies. This is going to be of critical importance as we face into the well signposted challenges of a growing elderly population in Ireland and an increased incidence and prevalence of Parkinson’s disease.”
David Slevin, CEO, Tallaght Hospital commented: “We are very proud of the work carried out by Dr Walsh, and his colleagues and all those involved in this very significant study. Tallaght Hospital has a tradition in patient-focused research and in particular research in the field of neuroscience. The success of carrying out this study attests to this.
About Dr. Richard Walsh – Neurologist & Acting Lead in Neurology in Tallaght Hospital
Dr. Richard Walsh joined Tallaght Hospital in 2012 following completion of his specialty training which included a Clinical Fellowship in Movement Disorders with a focus on dystonia and its management with botulinum toxin. From 2010 to 2012, Dr. Walsh completed two further clinical fellowships in Parkinson’s disease and Deep Brain Stimulation in Movement Disorders, when working with Professor Anthony Lang and Dr. Elena Moro in Toronto Western Hospital as the Parkinson Society Canada Fellow and Edmund J Saffra Fellow in Movement Disorders respectively.
Dr. Walsh established the Movement Disorders Unit in 2013, for which he has secured funding for a Parkinson’s disease Nurse Specialist and a Clinical Fellow in Movement Disorders. Dr. Walsh is the co-director of the National Ataxia Clinic with his consultant colleague Dr. Sinead Murphy. Dr. Walsh’s main research interest is the management motor fluctuations in advanced Parkinson’s disease and the role of deep brain stimulation in Parkinson’s disease and other movement disorders. He is currently the only Irish member of the DBS-Links group, a group of neurologists in southern England and the Channel Islands who provide a satellite deep brain stimulation management service for patients undergoing deep brain stimulation procedures in London. This service is aimed at maximising the potential for Irish patients to avail of deep brain stimulation in the UK and minimising the inconvenience of travel involved in the process.
About Tallaght Hospital
Tallaght Hospital is one of Ireland’s largest acute teaching hospitals, providing child-health, adult, psychiatric and age-related healthcare on one site. The hospital has 495 adult beds and 67 paediatric bed with 2,600 people on staff. The Hospital is a provider of local, regional and national specialities. It is also a national urology centre, the second largest provider of dialysis services in the country and a regional orthopaedic trauma centre.
Tallaght Hospital is one of two main teaching hospitals of Trinity College Dublin - specialising in the training and professional development of staff in areas such as nursing, health and social care professionals, emergency medicine and surgery, amongst many others. Tallaght Hospital is part of the Dublin Midlands Hospital Group which serves a population of over 1.2 million across seven counties.
A new satellite centre is to be built at Tallaght Hospital as part of the National Children’s Hospital project as a key element of an integrated clinical network for paediatric services nationally.
The hospital’s Emergency Departments catered for 44,640 Adult ED Attendances and 31,934 Paediatric Attendances in 2014. A further 263,929 patients were treated through the hospital’s outpatient clinics in 2014. The hospital’s operations are supported by a community of 200 general practitioners in surrounding communities.