A PENSIONER is being forced to work as an unpaid carer for his ill mum after a cash strapped NHS Ayrshire and Arran struggles to care for Parkinson’s patients.
Gerald Kennedy believes his 82-year-old mother’s quality of life would plummet if he couldn’t help her after taking care of Selina Kennedy for two years.
The 62-year-old thinks the local health board has been stretched too thin after his mum’s appointments were repeatedly cancelled.
It comes after Parkinson’s Uk Slammed NHS Ayrshire and Arran for not having enough specialist nurses in the area and for their long waiting times.
Between finding out what benefits she is entitled to and helping her stay as independent as possible, he feels like it he is the only person his mum can rely on for support.
Gerald now dreads to think about think about what her life would be like if she didn’t have someone to take on the responsibility, or other sufferers who don’t have a relative that can take on the job.
Now he is calling for NHS Ayrshire and Arran, the council, and charities to team up and give better help to those who have the disease.
He said:“It all came out about two years ago but I suspect she had it long before that because it takes so long to get diagnosed. It was hard going, I looked around the area to see if there was any kind of facilities or information about the disease so I could help my mum. We were pretty much left to our own devices.
“I had to figure out how to get her a wet room, what benefits she needed, what support groups were available, how to apply for home helpers, I had to look into it all myself with no help.
“It would be really good if the council and NHS and Parkinson’s UK all joined together to share information about facilities. It could take so much pressure off them individually if there was a way they could all link up so people could get the help they need much faster and more efficiently.
“I don’t want to be overly critical I think everyone does a great job and tries their best, but there just isn’t enough resources to be stretched out. My mum has had several appointments cancelled which she relies on to get the help she needs.
“We are in a good position because I am able to work for free to help her, I can do the research and figure out what we need. Not everyone is so lucky, some people might not have a support system like that or be able to help as much.
“It has changed quite a bit since the first two years she was diagnosed, you can see it going in a different direction and resources become thinner. My mum was originally getting appointments on a weekly basis with someone always coming to attend her problems.
“But as her disease developed and she couldn’t go out on her own as much so there was no need for someone to come along and teach her how to get about independently. There was no follow up.I just think it would have been better if instead of stopping the visits they were just adapted. I could still have used the information and support and my mum still needed help.
“Someone should have said this isn’t the end it just means some changes are needed and tell us where to go from there. We had been seeing the Parkinson’s specialist every about six months but since my mum has gotten sicker appointments are further apart.”
Annie Macleod, Scotland Director at Parkinson’s UK, says: “This is the first time that we’ve shone such a searching spotlight on Parkinson’s services in every part of Scotland.
"We recognise that people providing Parkinson’s care are doing an incredible job, but we’ve been challenged by people with Parkinson’s to discover whether their individual experiences are unique or part of a bigger and worrying picture.
"Sadly, we’ve found problems and failings are not isolated incidents but are part of a Scotland-wide under-provision of services for people with Parkinson’s.
“All but one Health Board - Western Isles - has inadequate specialist Parkinson’s nurse provision. Across Scotland there should be at least 40 Parkinson’s nurses, instead we have less than 30. Ayrshire has the equivalent of 2 nurses, it should have 3.3."
The local Health Board said: “NHS Ayrshire & Arran has approximately 700 people living in Ayrshire with a diagnosis of Parkinson’s disease and associated disorders. NHS Ayrshire & Arran currently employ a dedicated Consultant who specialises in Parkinson’s Disease and two Parkinson’s Nurse Specialists. People with Parkinson’s also receive support from Consultant Neurologists, where their condition requires this.There are increasing numbers of people being diagnosed with Parkinson’s Disease across Scotland and, in addition, recruiting Consultants with this interest and experience is challenging. However in Ayrshire and Arran, the majority of new people referred are seen by the specialist team within the 18 week waiting time target.”
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