What level of support do you get from palliative care teams?

I didn’t manage to use the palliative care team in the end as my husband was in hospital, but as this is anonymous I can say that I was terribly disappointed in our local hospice. I didn’t find our initial nurse contact very caring and on one visit I felt she was distracted and only interested in completing his DNR and sorting out medication. Then when he was at the end of his life and needed a bed, as was his wish, they were full. I know they can’t legislate for when they are full, but there wasn’t a lot of help or sympathy. I feel bad writing this but it’s true.

I hope you can get the help you need. Call them whenever you want and ask I guess.

So sorry to hear of your loss and experience, it’s very upsetting when you feel the care is not quite there at a time it’s so desperately needed. I hope you are finding a way through it all x

Hi GeorgieP. We found it difficult to initiate getting any palliative care for my dad whilst at hospital and then in the community. The referral pathway wasn’t clear and no one wanted to take responsibility for my dad’s care. We eventually found out that when hospital treatment stopped that his care needs were now to be managed through our GP service. We were told that it was our responsibility to contact our GP to ask for palliative care. The community palliative care team are now involved but in terms of their involvement it’s weekly phone calls to ask if Dad is comfortable or in any pain and in need of a syringe driver. I’ve found the district nurse to be the best offer of support for us as a family. She has helped set up a care package to provide practical care to my dad and to support my mum so that he can be cared for at home. The district nurse visits twice a week to see my dad and to check in on my mum to see if she needs anything. It’s been a rollercoaster and a battle to  get the right support in place which shouldn’t have had to happen at such a difficult time.

Oh golly, this sounds dreadful.  So sorry to hear what you went through with your husband in his last days, and the lack of support when you most needed it. I am glad you have at least had an opportunity to say on here how you feel about his and your care/support (or lack of it).  

I spent a lot of time on these forums searching for advice or help for our family, so feel it’s only fair to share any knowledge I have from this awful time. Sadly, shortly after my post, my Dad passed away which whilst we expected it somewhat, we could never have been prepared. If you are searching posts for advice and are wondering how you can access more support, all I can say is keep shouting for it, I called MacMillan a number of times and they were excellent in helping me navigate what to say to ensure we would get some help in time of need. As another poster above says - we shouldn’t have to but sadly this is the state of the nhs. Am sorry to anyone else going through it.