Parkinson's Nurse


#1
My Grandmother has Parkinson's and is currently in Gloucester hospital. There was a brilliant Parkinson's nurse for her area, but she left. Is there a new nurse that covers Gloucestershire? I'm struggling to get the nurses and doctors to understand what's going on - I could really do with some help from a professional that they will listen to!

#2
Hi thatshallot, I will speak to colleagues and find out the latest situation in Gloucestershire for you. If you need to talk to somebody in the meantime, please do call our helpline on 0808 800 0303 and talk to one of our nurses or trained advisers.

#3
Welcome to the forum Thatshallot.

I'm afraid I cannot answer your question regarding a Parkinson's nurse for Gloucestershire. However I suggest you ring the PUK helpline. You will find it at the top of the page, on the left hand side. I'm sure they will be able to help you.

I know from experience with my husband that hospital staff can be extremely ignorant about Parkinson's, it's effects and the necessity for meds to be taken on time. My husband also has dementia which also seems to be an unknown quantity for most general nursing staff.

I wish you all the best in trying to get appropriate care for your grandmother.

Keep us posted.

Worrals

#4
Hi thatsshallot

Hi and welcome. if your Grandmother is in GRH , ask the ward to refer to Claire Pollock PD nurse based at GRH, if she had a community PD nurse call 08456598109 they are based at Edward Jenner Court at Brockworth there are a few nurses in the Community Team.

hope that helps

Regards x

#5
Thank you all so much. I'm on my way now to see her and will find out the latest from the nursing staff...

#6
sorry being nosy thatshallot but was wodering how your grandmother is and how did you get on with getting support for her.


Best wishes xxx

#7
Sorry it's so delayed, but the answer is that Nan is now back home and doing very well. They decided she had delirium, brought on by an infection. She spent 3 weeks in hospital and has now been home for 2.

But, they lowered her madopar in hospital from 3 x 3 times a day to 2 x 3 times a day and she's now finding it difficult to get around. She's phoned the hospital Parkinson's nurse several times - as I did whilst she was in hospital - with no result. We will try the nurse at Brockworth and see if we can get a visit from her to see if there would be any harm in going back up to 3 x 3 daily.

Thank you all for your help and advice, it was very much appreciated.

#8
I thought I'd post an update on my grandmother incase it triggers a 'lightbulb moment' for someone else...

Nan was in and out of hospital from June '12 to January this year. Every time, the doctors would try to fight her water infection with different antibiotics and they would change her madopar and sleeping tablets too. Every time she came home, she was not quite as well as before she had gone in, but the doctors told us this was normal and she probably wouldn't fully recover every time.

To cut a long story short, she was admitted again in January and found to be resistant to both types of antibiotic they had been trying, so they stopped giving her anything and sent her home. We were very disappointed at the treatment she received and wrote a letter of complaint about the lack of communication from the hospital, but, surprisingly this has turned out to have worked in our favour.

As they have left her alone and not tried to treat her with anything else she has got better! She is now only taking her madopar and is as well as she was before this all started last June. It turns out that the antibiotics were causing her confusion, not her infection at all.

Spending so much time in a hospital bed does seem to have taken it's toll on her mobility, but she is bright, cheerful, well and fully switched on!

#9
Hi thatshallot

Thank you for update glad to hear things have improved ... Anti biotics are great but sometimes they are more of a hinderence


Best wishes x

#10
Glad to hear that things are better.

#11

I hope your Gran is Improving ,the story you have told is a familiar one, Parkinsons Nurses are In big demand and are like hens teeth,I consider myself very lucky as the team of Senior Neurologists and Nurse Consultants and Specialists are first class and I cannot fault their care, they have pulled me from the brink on many occasions, I can only show my appreciation by going in and giving talks to young people entering the NHS  trying to instil a curiosity about PD hopefully some of these bright youngsters will one day be on side in the fight against PD

                                     Best wishes       Fed