Fighting for our Parkinson's nurses

Changes to the NHS are still being debated in Parliament and so there is huge uncertainty over commissioning arrangements in parts of the UK.

However, what there's no uncertainty about is the massive difference Parkinson's nurses make to the lives of people with the condition.

This week members of our Worthing and District Branch (pictured right) presented their 1,267 signature-strong petition to the GP consortia to demand a specialist Parkinson's nurse to support the 600 people with Parkinson's, and their families and carers, in southern West Sussex. This is a position which had previously been agreed by the Primary Care Trust.

Our chief executive Steve Ford was also there to support the campaign and champion the vital role of Parkinson's nurses.

This is the culmination of weeks of hard work and campaigning, with Lucy McGrath, our South East influence and service development officer, starting conversations about appointing a nurse for the Coastal West Sussex area back in 2009. 2 Parkinson's nurses covering the whole of the county were agreed by the PCT but in September 2010, the new GP consortia declined to support the post in the south.

The difference a nurse would make to people in West Sussex is just immeasurable. And we know there are many other areas where people with Parkinson's do not have access to one of the UK's 310 Parkinson's nurses.

That's why we are working across the country to make sure everyone has access to this vital service - wherever they live in the UK.

Do you have a Parkinson's nurse where you live? If not, what difference would it make to your life? Or do you have a nurse who you couldn't do without?

Tell us your stories. Email or leave a comment below.


Anonymous said...

I live in north Hampshire, and I do have access to a Parkinson's Nurse. She's been a great help - there to answer questions, to make suggestions, to help me make difficult decisions about medication. She is part of a team that includes a dedicated physiotherapist (and I do mean dedicated, in both senses), who has also been invaluable. Without these two ladies, I would have felt much more isolated and would have missed out on a great deal of brilliant advice.

Parkinson's UK said...

Thanks for your comment zalamanderuk. If you're interested (or if anybody else reading this is interested) we're looking for people willing to share their story with the media. This could either be people who do have a Parkinson's nurse and think they're great - or people who don't have access to a nurse.

If anyone's interested in doing this please email

Some general info here - - about sharing your story with the media.

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