Reading a GP’s Twitterings made me realise that we have very different ideas about what patients should expect from GPs. GPs expect patients to fit into the numbers game (alcohol consumption, weight, blood pressure, cholesterol). Patients expect GPs to treat them as individuals. I do see both sides of the desk, being married to Dr B (who is not a GP but who does work closely with a number of excellent GPs). And having spent several years at medical school myself, perhaps I am not the best patient.
When we were preparing for Mom’s death, I looked around for a support group, of similarly terminally ill people, who didn’t want to go to hospice. Well, as far as we know none exists locally. And I think I know why. General Practice is not equipped for the emotional side of dying at home. Yes, they are a talented team of people who rally round with bed baths and pain relief but there was no emotional support. We found a hypnotherapist who worked with Mom to help her come to terms with her prognosis, and for that we are eternally grateful; but this approach was not endorsed by the GP and caused a delay in Mom starting this treatment, even though we paid privately for it.
I have recently mentioned this again, in response to a blog post about an article written by a Journalist who has recovered from breast cancer. I am so pleased for her and for the many women who do survive breast cancer, but there are so many people who do not survive cancer, and there is precious little support for those who know the battle is lost. Mom decided that hospice was not for her, and that meant we were on our own. And the point is, Mom’s story is painful, but beautiful. Mom’s story is about dying with dignity. Mom’s story needs to be told.
I have offered my services voluntarily through my GP to support the terminally ill in practical ways in our community. The response: the terminally ill should try this* group, they may not suit everyone as they are overtly Christian (or words to that effect). There could be a much better way. The District Nurses already provide a wonderful service to the community but they are stretched, short-staffed – could volunteers help in any way? Perhaps administrative, preparing information packs, ordering home equipment, filling in forms? That would free up the nurses for caring. Could volunteers be trained to talk to terminally ill people in their homes, helping them and their families through the maze of jargon and paperwork that comes with this label?
Mom’s story is close to home, mistakes were made in her treatment but we triumphed in the end. It is a powerful tribute to Mom. And it could help others. I would like to help others.