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The end of life experience for people with Parkinson's disease

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Claire Morris, Northumbria Healthcare NHS Foundation TrustNorthumbria Healthcare NHS Foundation Trust
The end of life experience for people with Parkinson's disease

Hello, my name is Claire Morris and I am a research doctor working in Northumbria, based with the Parkinson’s team at Northumbria Healthcare NHS Foundation Trust.

I am carrying out a research study to try to find ways of improving the end of life experience for people with Parkinson’s.

To do this I am hoping to gather the views of carers or relatives who have lost a loved one who had Parkinson’s and I have developed a private internet forum with Newcastle University where views can be shared and discussed. I understand if you have lost someone close to you this might be a very difficult time for you, but if you do think you could help with this research project, either now or in the future it would be gratefully appreciated. If you are interested in taking part please have a look at the forum and share your experiences of caring for a loved one with Parkinson’s at the end stages of life.  The forum will be open for around six to nine months and you can contribute as much, or as little as you would like to the discussion.
You can access the forum via this link  http://openlab.ncl.ac.uk/publicweb/pdforum/

If you click to register, further information about the project will be provided. No personal details will be taken unless you have read the description and have consented to join the forum; all that is required to join is an e-mail address. You are under no obligation to take part. If you know anyone else who might be able to help please do direct them to the forum link.

If you have any questions about this research project, please e-mail me on [email protected] or alternatively you can contact me by telephone on 07745302325

Keld

I just joined this forum and noted your name alongside mine! My mother died August 2013 and I supported her closely through end-stage PD. I will definitely support your research! I have been involved in other end-of-life research into PD and also with Marie Curie end of life so have hopefully lots to contribute that will be helpful to you.

Claire Morris, Northumbria Healthcare NHS Foundation TrustNorthumbria Healthcare NHS Foundation Trust

Hi Keld,

Thank you so much for your response. I look forward to hearing your views.

Claire

Keld

posted a response on your forum

Keld

I know this is a difficult topic but one that is important. I supported my mother and talking with her about what she wanted and helping her make plans enabled her to feel less worried about what would happen and that she would always have her voice - through me when necessary. I had the reassurance that I knew what she wanted. Hard to do but made things better and easier to cope with. So far I am the only person who had joined this dialogue with Claire the researcher...so she is not getting a very broad response base! The quality of the end of life experience for those with Parkinson's and their carers is important and is often not as it should be.

goldengirl

Perhaps the problem is that many carers stop looking at the forum when their loved one dies and so don't see the plea for responses.

GG

Claire Morris, Northumbria Healthcare NHS Foundation TrustNorthumbria Healthcare NHS Foundation Trust

Thanks for your comment goldengirl, I think that could well be the reason too. Parkinson's UK are looking into other ways they might be able to get the message to former carers as well, so hopefully over time other people can share their experiences too. This should help build a picture of what makes for good and bad experiences and allow us to see ways things could be improved. 

Keld

I agree to some extent, I joined the forum when I joined the Research Support Network, as all RSN members are encouraged to do.

So hopefully others in my position will find your posting Claire through the research section of the forum and feel able to contribute to your valuable research.

K