The struggle to access good Parkinson’s care

I was both intrigued and dismayed by Katy Wright’s letter describing the impressive care she has received for Parkinson’s disease (17 April). I live in Seaford, 11 miles from Lewes, where she lives, and my experience is very different.

I was diagnosed with Parkinson’s in 2017 and the last neurological appointment I had was in 2018. I was allotted a Parkinson’s nurse, who was brilliant, but she moved, with the result that I have seen nobody since November 2022.

Before she left, she wrote to my GP recommending I see a Parkinson’s nurse every six months. My efforts to find a nurse have failed, so I wrote to my MP, Maria Caulfield, whose reply ends: “I hope you find this response reassuring that the necessary work is being done to ensure that Parkinson’s care will continue to remain at a high standard.” No, I do not – my situation remains the same.
Anthony J Lester
Seaford, East Sussex

• I too share Jeremy Paxman’s bleak take on Parkinson’s, but thankfully not all the time. I am lucky in that I have the love, care and support of a great wife and some good friends, and I live in an area with good support services. I realise that many people don’t.

I think a lot of people’s bleakness and possibly anger stems from the fact that it is exactly 200 years since the death of the physician James Parkinson, and despite great efforts, we still do not know the cause or have a cure.
Barry Norman
Drighlington, West Yorkshire

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