Whew! What a long post title – but it’s the official name of the meeting. I know; I have the agenda in front of me.
I was invited along to this meeting held by Parkinson’s UK in Reading, last Wednesday evening. It was part of a larger event (a national board meeting held, this year, in the South region); this was the introductory meeting, to which a number of People with Parkinson’s were invited. I was one of them. I’m aware that I was part of a token presence – it is, after all, impossible to invite everyone – and I suspect that one of the reasons I was invited was to help represent the younger Parkie. But I think we were positive sorts of tokens.
To be honest, it was kind of nice to get out of the house in the evening and focus on being with other adults, although I must confess that, when asked my job title, I said “Mum” (concise and true). I suspect that my age and appearance may have implied that I may have had a professional, as opposed to personal, interest.
We were treated to a lovely buffet, during which I met some of the charity’s directors and staff, and then we had a series of talks designed to illustrate the current level of services and the imagined future. Inevitable concern was expressed regarding potential NHS cuts – it seems that Parkinson’s, as a long term condition that rarely presents an all-out emergency, may not be top of the NHS’s list of priorities.
Finally, those of us present who suffer from Parkinson’s were asked to relate our experiences with various services received. Naturally, my tale was quickly told – my diagnosis is, after all, quite recent – and was generally satisfactory (with the possible exception of my consultant neglecting to mention the availability of a Parkinson’s Nurse; this was, fortunately, quickly remedied by the physiotherapist whom I requested access to). Most of the services I have made use of thus far involve consultation and education – some of the latter provided by the NHS, some by the charity Parkinson’s UK. It seems to me that there is a willingness for the two groups to work together.
In fact, cohesion of service was one aspect that was identified as in need of improvement. GP’s surgeries, assorted hospital departments, sometimes multiple hospitals, physiotherapists and specialist nurses – all can be involved in managing one person’s Parkinson’s and quality of life. And then, of course, there are the unpaid carers…
All in all, it was a positive meeting. It seemed like there was a lot of thought being expended on the future of services in the UK for people with Parkinson’s, and that the will was there to continue improving those services.