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Parkinson's Care

Posted By unite

"Parkinson's Care"

About: North Cumbria Integrated Care NHS Foundation Trust

(as a service user),

I'm a person with Parkinson's and I'm also a member of the local Parkinson's support group.  As a group we don't like to complain in case our care is affected.The service in my area (North Cumbria) has gone from very bad to dismal!

We had a single consultant at Carlisle Infirmary hospital who we see for our Parkinson's who is currently not a work and one part time Parkinson's nurse. 

In my opinion the service is run on a shoe string and if one member of staff is off it seems the service struggles massively to the point of collapse.

Parkinson's is a progressive condition and we need quality care and advice to stay as well as possible. I've not had a review/been seen for 14 months.

We had a speaker from Newcastle attend one of our meetings and they told us about their service. That is the service we want and deserve.  Why should we put up with a second class service here in North Cumbria? We want to see some investment and stability in the service so it can run because it has appropriate staffing and resources.

I don't want anyone newly diagnosed to experience this. I would like to see more staff so the service can function better, more resources for the service to improve, better education for staff about living with Parkinson's. Please listen to your patients.

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Responses

Response from North Cumbria Integrated Care NHS Foundation Trust 4 years ago
North Cumbria Integrated Care NHS Foundation Trust

Submitted on 23/12/2019 at 08:18
Published on nhs.uk at 09:09

Firstly, please let me apologise for the delay in responding to your comment here on the NHS website, this was due to circumstances beyond the Trusts control. This has now been rectified to ensure that we no longer miss the vital feedback made available to us.

I am very sorry that your Parkinson’s Care is less than satisfactory and I can only imagine how upsetting this is for you.

Our PAL’s (Patient Advice and Liaison) service has been contacted by Eden Valley Parkinson Group and work is now underway to look at the service offered by the Trust. It is hoped that we can raise awareness of Parkinson’s within the community, establish a productive and ongoing conversation and link in with the Parkinson’s UK ‘get it on time’ campaign.

We do value your feedback and I will share this with the relevant senior staff so that they are aware of how you feel. All feedback helps us to identify where we can improve.

Best regards,

Alison S-D

Patient Experience

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