The struggle to gain access to good Parkinson’s care | Letters

I was both intrigued and appalled by Katy Wright’s letter describing the impressive care she has received for Parkinson’s disease (April 17). 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 assigned a Parkinson’s nurse, who was brilliant, but she moved away, and as a result I haven’t seen anyone since November 2022.

Before she left, she wrote a letter to my GP advising me to see a Parkinson’s nurse every six months. My attempts to find a nurse have been unsuccessful so I wrote to my MP, Maria Caulfield, whose response ends: “I hope you find this response reassuring that the necessary work is being done to ensure that care for Parkinson’s remains at a high level. standard.” No, I don’t – my situation remains the same.
Anthony J Lester
Seaford, East Sussex

I also share Jeremy Paxman’s gloomy view of Parkinson’s, but fortunately not always. I am fortunate to have the love, care and support of a wonderful woman and some good friends, and to live in an area with good support services. I realize that many people don’t do that.

I think the gloom and possibly anger of many people 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 for it.
Barry Norman
Drighlington, West Yorkshire