Hi my dad (77) has been diagnosed with a brain tumour, it is very advanced, no treatment is being offered, and he likely has weeks left. The consultant has written to the GP surgery asking for him to be referred to palliative care.
We have had nothing from the GP other than a letter saying sorry about the diagnosis and fill out an eConsult form if you need us.
I am really angry and feel mum is being left to muddle through on her own, there is no care plan, has been no assessment of how he is doing since hospital discharge 3 weeks ago.
Can anyone advise what should be happening, what do we need to say to get things in place?
Hi Pootle, so sorry to hear the news about your Dad. Local hospice teams can be amazing once at a palliative care stage regardless of whether your Dad actually ends up in a hospice or not. Chase the GP for the referral to them either by eConsult or phone (I had to use eConsult with my GP as they never pick up the phone).
There is some guidance on the Macmillan website about end of life which you may find helpful to read. It can be a difficult read, but I think it is better to be forewarned and prepared, however just read what you are comfortable reading.
www.macmillan.org.uk/.../end-of-life
www.macmillan.org.uk/.../the-last-few-days-of-life
Sending a virtual hug and good luck with the GP,
Chris
HI Pootle36
I don't have much to add that Chris hasn't already said but thought I'd reach out. We were passed off to the palliative care team at the end of Feb 2023. People naturally panic when the word palliative is used but actually being passed into the care of the local team was the best thing that could have happened at that point.
Chase up the GP to refer you to the community nursing team and the local hospice team.
In our case, we were in the palliative care phase right through until the end of Oct 2023 but just knowing that there was someone I could call 24/7 if anything happened to G was a huge weight off my mind.
We didn't need the nurses or the community hospice team too much at the start- weekly phone calls and fortnightly visits worked fine. The key thing for me and the family was that when the time came for G to go into the hospice, we weren't dealing with strangers. We were all cared for by a team who had got to know us as a family and that really helped.
Hope you get things in place soon as I'm sure it will be a weight off your mum's mind and yours.
Sending you all love and light and strength,
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
