Parkinson’s Awareness Week 2023 11th – 16th April. “Pep In Your Step 4 Parkinson’s” Date – Tuesday…
Minister Anne Rabbitte, TD, launches the Parkinson’s Association of Ireland’s new website
On Wednesday, Minister Anne Rabbitte, TD, launches the Parkinson’s Association of Ireland’s new website at Raheen Woods Hotel, Athenry, Galway
The new website, unveiled today (www.parkinsons.ie), is the result of several months’ work to develop an easy-to-use digital experience for users. The website showcases what Parkinson’s Association of Ireland has to offer people living with Parkinson’s Disease, their families and carers, health professionals and other interested people.
www.parkinsons.ie can often be the first port of call when someone receives a diagnosis of Parkinson’s Disease in Ireland and at the fore of the redesign was developing simple navigation tools so that users can access information as easily and efficiently as possible. This ensures that people are kept up-to-date with the latest research and medical developments in the treatment of the disease. It provides a safe space for people with Parkinson’s to find the answers to their questions and offers advice and guidance on improving quality of life (body and mind). There is currently no cure for Parkinson’s Disease.
Anne Rabbitte TD (Minister of State at the Department of Children, Equality, Disability, Integration and Youth and at the Department of Health) attended the launch today and met with members of the Galway/Roscommon Branch of the Association following their exercise class run locally by volunteers. Speaking at the event, Minister Rabbitte said:
“I’m delighted to be here today at the Galway/Roscommon Branch of Parkinson’s Association of Ireland. It’s wonderful to meet everyone and see how this community supports one another. I’d like to congratulate the Association on its new website – it is very easy to use and I can see a lot of work and thought has gone into making it accessible and informative for people living with Parkinson’s.”
David Power, Director at Parkinson’s Association of Ireland, also in attendance at the launch, commented:
“It was essential for us to ensure that users of the site could access the information both on their desktop computers and on mobile devices. As part of the process we had great feedback from a number of our staff, members and affiliates to help us with what we delivered. Among the new features of the site are pages to online classes, a dedicated nurse helpline page and an FAQ page.
We are very grateful to our partner www.ilikecake.ie for all the help during the process.”
A recent nationally representative survey of people living with PD in Ireland showed that almost 80% of patients reported never having any level of access to a Parkinson’s Disease Nurse Specialist (PDNS), since their diagnosis (O’ Shea et al. 2022). This level of patient self-reported access closely correlates with the level of current PDNS provision in Ireland (6 existing posts), signalling the high validity of the survey findings.
The most frequent response regarding priorities for improved PD care for patients and families, was having access to a PDNS. In the absence of a cure for this neurodegenerative condition, significant long-term investment is needed to support capacity development and sustainability for PD services.
In response to this, Parkinson’s Association of Ireland employs a full time PD Nurse to support the growing demand for this service. People living with Parkinson’s and their families can contact the Nurse through the support line at 1800 359359 and via the website.
Speaking at the event, Paula Gilmore, CEO of Parkinson’s Association of Ireland commented:
“According to latest figures, there are approximately 15,000 people with Parkinson’s Disease (PD) in Ireland. PD prevalence is continuously rising and is projected to double by 2040, primarily because of population ageing – this is according to research undertaken in part by the Michael J Fox foundation.
We believe that there has not been sufficient investment made in healthcare services to improve PD care capacity, in line with the rapidly growing population-level need. Under-staffing is a core problem within PD services and remains below recommended levels according to the Neurology Model of Care.
We hope that with the help of this new website we can offer the support needed to people affected with the disease and allow easy access for them to connect with our network of branches and our full-time Parkinson’s Disease Specialist Nurse.”
Parkinson’s Association of Ireland provides a listening ear and information on any aspect of living with Parkinson’s Disease through its national head office and its network of nationwide branches.