I feel angry with the hospice - do I say anything?

[oneofsuesylvesterscheerios]

My dad died 4 weeks ago. He had a condition very similar to motor neurone disease but it was never actually diagnosed. This caused some stress for us as we were never able to trigger any 'official' help from any organisatiuons which I think could have helped us with advice, information , support etc.

However, our GP referred to us to the local hospice who were brilliant. Dad was assigned a nurse who got to know him really well and who visited him and/or me, and who phoned me regularly. I guess we used to see or speak to her at least twice a month. She was sort of 'generic' nurse (i.e. not specialising in any particular terminal illness). We'd been seeing her since last summer.

However, in Jan/Feb she told us she was being assigned to different patients and that we would be having a new named nurse who specialised in neurological and muscular conditions like dad's. She came to see dad in early March to introduce herself and she gave us some advice about getting some more tests done.

However, that was all we saw of her. I rang her a few times to see if she could pop in to see dad like the other nurse used to but she never got back to me. The nursing home he was in tried to contact her too but no joy. I do know she had a very big caseload and limited time, but now the initial shock of his death is wearing off I actually feel very let down.

The hospice has been brilliant in every other way - I'm actually going there tomorrow for some counselling from their family support team. And therefore it seems awful for me to complain in any way... especially as there's no point for us now he's dead . I just can't understand why they had to change his nurse. The 'old' one actually rang me as I sat at dad's deathbed, to chat and offer support, even though he wasn't on her casebook anymore. And the owrse thing is that dad was quite fearful in those last few weeks - he had chest infections and he knew that that could be fatal for him. I think he would have really appreciated seeing the nurse who knew him well and who could give him honest advice and listen to his fears. I know he didn't want to upset us by saying he was frightened (one of his carers told me this).

Is it worth saying how I feel when I go tomorrow?

[giraffesCantZumba]

Yes.

I have limited hospice experience (am a volunteer in a childrens hospice) but from what I know then they would welcome ways to make things easier for others and realise errors. Also important for you to be able to chat through (maybe with the counsellor) how that made you feel.

[giraffesCantZumba]

Oh and sorry about your dad x

[saltyseadog]

OP, really sorry to hear about your Dad.

In response to your question, yes. We use a childrens hospice for dd, and I know that they actively welcome this sort of feedback. If it can make life better for another family down the line then its worth saying.

[ohmeohmy]

Sorry about your dad and agree with others, the feedback will help in the long run. If it is because her caseload is too large then that it something they can address,if it is something else they need to find out what. Do say, constructive criticism is valuable.

[ThumbsNoseAtSnapewitch]

Very sorry to hear about your Dad and yes, do say something. The hospice need to be aware, if they are not already, how that change affected you because from what I know of hospices, they will not be happy that this has happened.

So sad that your Dad had that bad experience but it will be cathartic for you to tell them how badly you and he were let down by the administrative process (and, in reality, the overworked neurology nurse) - it will help you to feel that you are getting, not justice exactly, but understanding for what your Dad went through and that you are still fighting his corner, even though he's already gone.

[yellowkiwi]

We were sent a form from the hospice asking us to give feedback and although I was very positive I did include one thing that I thought they could have done better. Feedback is so important to improving services and you could be helping someone who is in a similar position.

Sorry to hear about your Dad.

[OmbudsmanAdvice]

Sorry to hear about your Dad.

I would write a letter and calmly outline your experience. If you try and accept it was not personal (either the nurse involved or the hospice) it will help you complain in a constructive way and I agree that the hospice would like to know this.

If you stop another family experiencing this it will be worth it.

Basically hospice in their wisdom think knowledgeable nurse best for you. That nurse too busy too see you. Therefore a less knowledgeable nurse as backup after initial advice from the wise one would be a better option?