Introduction
Early Onset Parkinson’s Disease (EOPD.ie) is a completely voluntary registered not for profit, providing peer Parkinson’s support all over Ireland. We are a small but committed team with big plans for the future of the organisation.
Our aim is to assist people with Parkinson’s, their families and carers, health professionals and other interested people by offering support, a listening ear and information on any aspect of living with Early Onset Parkinson’s. Over 18,000 people in Ireland have Parkinson’s Disease. Our plans highlight the fantastic work that is done, on a voluntary basis across the country. This work is done by volunteers, many of whom have Parkinson’s or have a family member or a loved one with Parkinson’s often family members are also working in caring roles.
Key challenges for the EOPD.ie community
EOPD.ie 2022 BUDGET PROPOSAL
Our five budget proposals are based on the principle that we need the right care, at the right time, in the right place, and from the right person. EOPD.ie is asking the State to provide a complementary suite of supports in each main hospital to support neurologists as part of an Integrated Pathway in Parkinson’s care in line with best practice.
The importance of Speech and Language Therapy
There are currently only 26 Speech and Language Therapists providing the LSVT loud (Lee Silverman Voice Treatment) programme which is an effective speech treatment for People living with Parkinson’s. We would request that 9 additional Speech and Language Therapists who are trained in LSVT are funded and recruited by the HSE for 2022.
Estimated Cost 9 x €65,000 = €585,000
The importance of physical exercise
There are currently only 12 LSVT Big trained Physical and Occupation Therapists in the county. We would request that an additional 9 LSVT trained Physical, and Occupation Therapists are funded and recruited by the HSE for 2022.
Estimated Cost 9 x €40,000 = €540,000
Enhance the number of Parkinson’s nurses in Ireland
There are currently only 6 Parkinson’s nurses in the country. The last STRATEGIC REVIEW OF NEUROLOGY AND CLINICAL NEUROPHYSIOLOGY SERVICES 2009 recommended that Ireland needs 27 Parkinson’s nurses to meet the 2009 demand, notwithstanding, the European Neurological Alliance view that neurological conditions will increase from 1 million in 2020 to 3 million by 2030. EOPD.ie are requesting that 9 Parkinson’s nurses are immediately recruited to meet the needs of the PD community going forward. This is the first step required in developing a broader multidisciplinary approach for people living with Parkinson’s.
Estimated Cost 9 x €55,000 = €495,000
Green book/Medical card issue
The call from us at EOPD.ie is to introduce a medical card to replace the green book. This would simplify and reduce the anxiety and stress that is caused when People living with Parkinson’s are prescribed drugs that are not covered under the green book. Our community is then required to pay the additional cost. We are not calling for a free medical card but we would recommend that an annual cap of €140 be placed on the new medical card.
Positive impact of Technology
Due to Covid-19, the requirement to deliver classes and telehealth to our community requires that a countrywide broadband service is urgently required. This will help to reduce geographical isolation for our community. The cost of technology is a major impairment, and we are also calling for a vat rebate on communications technology that will enhance the lives of our PD community and their carers.
CONCLUSION
We would welcome an opportunity to discuss any questions on this pre-budget submission.
Mary Casserly
Chairperson