Tackling poor services - Jim Henry's story

Jim Henry, 66, talks about the lack of Parkinson's services in Northern Ireland and what he's doing to combat this.

Lack of local Parkinson's specialists

"I've had problems with my treatment for Parkinson's ever since I was diagnosed 4 years ago.

"Normally after diagnosis you see a specialist nurse to talk over what to expect. I was told the nurse in my area was on maternity leave, and there was no replacement.

"My wife and I were left totally confused and bewildered. It was obviously an upsetting time, and the lack of support made it worse.

"It wasn't until we spoke to a friend whose husband has Parkinson's, and she put us in touch with Parkinson's UK, that we got any help at all.

Help and support from Parkinson's UK

"Someone from the charity came to my home and talked everything through with me, explaining what help I could get and what benefits I might be entitled to. It was excellent - so helpful.

"I also started going along to my local support group. If it wasn't for Parkinson's UK I wouldn't have had any advice at all.

"I've never seen a specialist nurse. I had some physiotherapy in the beginning, which helped me greatly. However, any physiotherapy since has been organised by Parkinson's UK.

The charity also provided speech therapy for me when my voice weakened. I don't know what I would have done without them.

Campaigning for better services

"I'm now chair of the Lisburn Branch of Parkinson's UK. We're campaigning to improve local services for people with Parkinson's.

"We've met with our local health services committee, and our MP is behind us.

"Northern Ireland has particularly bad Parkinson's care, and that needs to change. The resources for Parkinson's are dismal."

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