Let down by Palliative care.

I lost my Dad 2 months ago. We cared for him at home, in the last 2 weeks our local hospice was contacted as he asked to go in there. They never got back to us. His last 24hours were very upsetting. He was in so much pain and we felt we were coping alone. Palliative nurse in the year after diagnosis was always reassuring Dad that he wouldn’t be in pain, as that was what he was worried about. In the end we contacted the community nurses and he was given morphine. 3 times they came to give more and it still didn’t help. I feel it’s a blessing that Dad is no longer suffering but so angry and let down. I don’t think I’ve cried properly since, I don’t know how to stop being angry. Having said that writing this is making me weep. I do feel that there should be more information about end of life and what to expect.

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Hi, thanks for your reply, that’s a good idea. Seems obvious now you’ve said it.

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Hi, I totally understand how you feel being let down by the people that should be there to support you at the most difficult time of your life. I lost my husband in September 2021 aged 51 years. Whilst he was an inpatient we were told palliative care team had reviewed his notes and he was deemed stable & not requiring palliative support. We saw this as a positive, oh how wrong we were. Once home my husband was unable to mobilise, couldn’t eat & in constant pain. I worried about the amount of medication I was giving him, which didn’t control his pain. As a family we were left totally unsupported & I looked after him 24/7, continually worrying about him. A week before he passed away he was transferred to a hospice, we had to meet with them yesterday as the care they provided was also below standard. The hospice apologised & recognised their failings & discussed measures in place to address their shortcomings. I now plan to write to the acute trust who cared for my husband and complain about the lack of care & poor patient experience. All I can say is, it’s hard to do & listening yesterday to the lead Dr admit they failed my beautiful husband & our family broke my heart but if we don’t address the issues other patients & families will suffer too.

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Thanks for your reply. I am so sorry for your loss. For many of us it’s the first time we are in this situation and we do look to the health care professionals to know best and guide us. You’re right, we have to point out to them when they have let our loved ones down, otherwise things will not change.

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Please do write to the Trust/ hospital or hospice because if you don’t complaint others woild suffer .
Here in this website i have read stories about how nhs and charities have left terminal people without the compassion pain relief.
Charities and hospitals have treat them with contempt without compation and care.
Like the person is not worth.
Don’t let treat your complaint ax a breavement because the pain your loveone suffer was not necessary.

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