Ms Richelle Flanagan:

I can give the perspective in respect of Parkinson's disease because that is what I know best. The lack of access to care probably impacts on all people with neurological conditions. Parkinson's disease has many symptoms. People may be on medication five times a day. One woman in Letterkenny has not seen a neurologist since she was diagnosed seven years ago. She has declined in the past year. She has been seen by a geriatrician. To a certain extent, geriatricians can manage people with Parkinson's disease but ultimately she needs to be seen by the expert in her condition, which is the neurologist. There are issues with her medication. She is starting to have falls and has issues with her blood pressure. She needs to have a tilt test. There is a whole gamut of things that she needs to have but she will not get them anytime soon. She will possibly have a fall and end up in hospital. There will likely not be a neuro rehab team there. She will not be given her medications on time and will end up being frozen in the bed. She will not be able to swallow properly which will lead to other issues. It is a vicious circle.

Many people know of motor neurone disease. Progressive supranuclear palsy, PSP, is very similar to ALS but twice as many people in Ireland suffer from it. They do not get access to specialist care either. They may fall up to 20 times a day but do not get access to therapists to help manage that or to neurologists to adjust their medication.

Regarding carers, a nurse in the Parkinson's association told me of the sad case of a lady caring for her husband who has Lewy body dementia, which is another neurological condition. She felt like committing suicide because there was so much pressure on her. Carers have told me there is no access to palliative services when it reaches that advanced stage. There is nobody to guide them in how to manage that. They are trying to do it in their homes. That is a big pressure on the carers. As I have said, 90% do not have access to dieticians. They do not have access to mental health services, occupational therapy or speech and language therapy, all of which could really help not only the person with the condition but also the carers who are struggling to look after their loved ones.