PSP Association
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District nurse

Just thought I would see if anyone else has experienced this we had a visit from the nurse from Isobel hospice she is so lovely, she said she had been in touch with the district nurse and had they been to visit, I said no she said I will ring them, which she did and asked them if George had been referred, she said yes, the nurse asked them when we're they going to visit, she said they were coming the next day, we had no letter from the, no phone call, I don't think the Isobel hospice lady was very pleased, she asked them for a time, they could not give one, but would ring us before they come, what would of happened if we were not home? Feeling really disappointed, up to now no one has come, we could off gone out, it is such a lovely day, feeling so let down, can't explain how much, and feeling so down, grandchildren came around for an hour makes you feel so much better when they cuddle you and kiss you and say how much they love you. Well I hope everyone is enjoying this lovely weather. Love to all Yvonne xxxxxxxx

8 Replies

I phoned the district nurse yesterday as my husband has an open sore on his bottom. The district nurse for our area wasn't in so I was told she would ring when she arrived. I'd promised to ring a friend yesterday but couldn't as I was awaiting the call. She rang late afternoon and said she will come today. I asked her to make it after 2.30 as I have a sitter until then and needed to go out. She said 2.30 would be too late. She couldn't give me a time. Instead of going out I worked in the garden without having to worry about what Colin was doing. She arrived at 1.45 and left at 2.05 which gave me just enough time to shoot out an get a prescription before the sitter left at 2.30 pm. I hope yours arrived eventually. I agree with you about the grandchildren. One of ours came to stay at the weekend. A 3 year old can raise everyone's spirits.

Sending you a big hug x


Thank you she arrived at 3.30 I was told she was coming to do the continuation care, but she said she knew nothing about it, she would have to get someone else to come in and do that, she said more than likely the matron, I asked her if they could let me know when, she said she would ask them to ring, also she said she would get some convenes she then phoned me up to say George needs to be measured someone will come and do that, I must say she was very nice, but not really on the ball with things, she said she would also get George some banana drinks to build him up, and when she phoned she said that we were on the system we would not be forgotten. She also said she would get some physio set up, hopefully it will all come together, and that we would get a visit once a week, let's see love to you all NannaB, hope Colin's sore gets better soon Yvonne xxxxxx


Surprise surprise! Another district nurse turned up today without warning. She was yesterday's supervisor. She is going to get Colin a better cushion. He is on an air cushion at the moment but she said they were really only for short term use. She looked at the sore, told me I was doing all I should be and said she would come back next Thursday. Again she couldn't give me a time but said if it is a nice day and I want to go out, just ring her and she will come another day.

A very positive visit.



Hey Yvonne - it's annoying how sometimes these things take time - calling, waiting... but hopefully they will now organise things for you - wasn't the weather gorgeous yesterday! We're lucky to get a (private) nurse coming round every day (prescribed by the GP so reimbursed by medical insurance here in Belgium). My dad has swollen feet/legs so they come to put stretchy bandages on. The good things is, every time we have another (little) issue, they quickly take care of it too, even if it's not (yet) on the careplan. Once one arrived just as my dad had had a fall and helped us get him up. He says the bandages don't really help but just to keep the nurses coming every morning, it's worth to keep it going... Have a wonderful day everyone - I may not comment much but I read your stories and it really is such a wonderful support.

Lieve x


Hi Yvonne, our Hospice got in touch with our District Nurse, as she said we needed to be in touch with her. Well, she phoned and really, I was left with the impression that we should have been in contact with her! Told me, she was for end of life care and as we didn't need that, phone when we did!!! Not impressed at all! Nice lady, very polite, just didn't want to know!!!

Lots of love



Hi Yvonne. It sounds as though you are having a difficult time. You may find it helpful to speak with Jan Wilderspin, who is the Specialist Care Adviser for your area (based on the fact that your husband's nurse comes from Isobel Hospice).

If you call the Helpline on Tel 0300 011 0122, they can put you through to Jan.

I do hope this helps.

Very best wishes



Thank you very much Liz will give them a ring yes the nurse from Isobel hospice was lovely and helpful, so will ring the number you gave me to see about the district nurses xxxxx


I have experienced that and worse. The system doesnt work and those who work for the system have lost the ability to care


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