"Parkinsons nurses who dont seem to care."

About: Crosshouse Hospital General practices in Ayrshire & Arran

(as a relative),

My Mother resides in North Ayrshire and prior to being moved from Southern General Hospital to Crosshouse Hospital, she was seen by a consultant every six months. My mother has had no contact with a Parkinsons consultant for three years.

In the last six months or more, my mother has lost a significant amount of weight, she is practically skin and bone. She was informed by a GP that he would refer her to a dietician.....she's still waiting. Meanwhile her medication is not working. She experiences more 'wearing off' than being 'on'. She is well for around one hour before her medication starts to wear off, resulting in no quality of life, not able to get out of the house, not able to go to the toilet, worries about not being able to swallow her medication. Her medication has not changed much at all over the years and is told by her Parkinsons nurse (when they actually bother to respond to her emails, texts, phone calls) that she's had all she can get and that's it basically. She resides alone and is terrified when she becomes unwell, which happens several times a day. When NHS 24 are called out they do nothing other than tell her to call the Parkinsons nurse. When she presses her panic alarm, the staff who respond tell her there's nothing they can do.

She is becoming increasingly frail and unwell. she fall's continually and is covered in bruises. She is only 58 years old.

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Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear Amandrd,

Firstly, may I say how awful this must be for your Mum and all the family and I am so sorry for any support your Mum has missed.

There are quite a few things in your post I am sure we can help with.

I have had a long chat with our Parkinson's Disease Specialist Nurse and she has outlined the current NHS Ayrshire and Arran situation regarding the Parkinson's service.

Very unfortunately, due to illness and staff changes, there is now only one Consultant where previously there were three. This has clearly impact on the capacity of the service and our Specialist Nurse is equally concerned about the pressure the service is facing. There is a lot of work being done to address this in an endeavour to improve the situation e.g. attracting a Nurse and Doctors with a special interest in Parkinson's to augment the current staffing and also reviewing the service to look at different ways of working.

On a practical level, we can try to get a short-notice appointment with the Consultant to review your Mum and her medication etc. And they may also be able to help speed up the dietician review.

Another aspect of your post I found very concerning. My understanding is that falls are common with Parkinson's, but maybe your Mum and her home needs reviewed by Social Care and the Occupational Therapy Service in an endeavour to maximise her safety. It may be that the accommodation can be improved to I will pass this to the appropriate teams to let them reflect on this. However, in order to address these things, I would need to know your Mum's name, date of birth and address. We would also need to be sure your Mum wants us to look at any of the above.

If your Mum is happy re the above, I can be contracted on 01563 826222 and Eunice.goodwin@aapct.scot.nhs.uk.

The specialist Nurse would be happy to chat over any further concerns you may have.

I sincerely thank you for raising the flag over our staff issues, it may be help us to recruit the staff the service clearly requires.

Best wishes,

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