Advice on medical care: My wife qualified... - PSP Association

PSP Association

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Advice on medical care

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My wife qualified for CHC last December. Just recently there has been a shake up with the district nurses, different teams, new team leaders etc. For the first four months she was visited by the district nurses on a weekly basis, they then reduced the visits to once every two weeks although it was agreed and still is she is continuing to deteriorate. They have today cut the visits to once a month, both decisions based on their conclusion that she does not receive actual medical attention on these visits apart from them looking for bed sores which they say the carers can do. They have done this despite the fact she is on palliative care and in the latter stages of PSP with all and I mean all the horrible things that go with it, which they say are outside their remit and do not require actual medical attention. I argued till I was blue in the face about it being a progressive disease and that things change on a daily basis and that these decisions can not be right as on top of that they have also taken away the support I had. All to no avail. I would appreciate some thoughts and advice on this .Many thanks.

3 Replies

I nursed my husband for 6 years and only saw the district nurse a handful of times. She called when I reported to the district nurses that C had a pressure sore. She took a photo, prescribed medihoney recommended by the carers and called back, taking another photo a few days later and telling me to call her if I was worried. She called another couple of times after that.

She also called when I requested a saliva pump, ordered one and then gave me and two carers instructions on how to use it. I knew I could contact them if I needed to but there wasn’t really any point in them visiting unless a visit was requested as they didn’t do anything if there were no problems and if there was, others could usually sort them out. The same with the neurologist who we only saw about 3 times in 6 years. Again, I knew I could ask to see him if I felt it was needed but didn’t see the point in seeing yet more professionals if they couldn’t help.

I know how hard it is nursing someone with a progressive condition. Do you have any other support apart from the carers? Do you manage to get out? I had two lovely ladies from Crossroads who came twice a week when I could do things I wanted. There is also Carers First who others have told me are good. I had a lot of support from friends and family so I know I probably had it easier than many but don’t refuse help if it’s offered as folk will soon stop asking.

I do hope you get more support so you can cope with the future challenges.

Sending you a big hug.


Have the nurses been privatised? I was talking to one this morning who was concerned that they were being taken over by a private company who specialises on mental health whereas most of their work is among the aged. I would take it up with your GP as you are CHC funded they will have been allocated a certain amount of money to provide nursing care. For the first two or three years of our care the nurses didn't visit very often and trusted the carers to monitor bed sores etc. But they were always available at the end of the phone. I did once express my concerns to my wife's GP he said 'some are better than others ' which is very true.Mainly we had to call them out when we had catheter problems.. now we are in the latter stages two of them visit every day as we are on controlled drugs, but they are not here for much longer than half an hour, they have always been available 24 hours a day for the 5 1/2 years we have been served by them as I hope they are for you.

Our district nurses are the best always at the end of the phone if needed, I think there work loads have got so big, it is impossible for them to visit often, they will come in if needed. Yvonne xxxxx

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