Why I am still up and on the computer? I was really tired earlier today but I had an espresso at 9.30 which might not have been a great idea. Dinner was lovely. I had a prawn salad to start, then roast coley (lovely white fish which I'd not tried before) on a bed of piperade, spinach and butterbeans. All quite healthy until I ordered the sticky toffee pudding . Then I came home and had an espresso and large Tia Maria.
I had to laugh at myself eating butterbeans. I always had a total revulsion of them as a kid... I would practically be in tears whenever my mum served them up to us (only about once a month, I have to say). Tonight when I saw the menu, the child in me went "ugh" and then the adult said "hang on, you like beans, and that's all they are". I was quite impressed with them, actually.
I finished the Nigel Slater book (Toast) this morning. What a great read... I had to agree with how he described so much of the food he writes about. Is there a follow up? I'd like to hear the next part of the story........
From PCUK:
We're in pretty much the same situation with my dad (felt ill from mid-January, in hospital 6 weeks, diagnosed 8th March, no treatment offered). My dad is 68. We also wonder about "when" as it isn't something that anybody has been very specific about with us. The closest we got was one Registrar who said that because my dad's cancer had started to spread (into his stomach lining) then it was likely he would deteriorate rapidly and probably had "months".
For this reason they decided not to refer my dad to the Regional specialist, and didn't offer any treatment locally. I read into that months meant the short term rather than almost a year! My major issue when my dad left hospital having being told he was terminally ill and that they would arrange for his palliative care, is that nobody actually explained to us what "palliative care" is. So, over the course of the 2 weeks after his discharge, we were in a bit of confusion about who would come out, when, for how long and who did what.
However, what I did manage to establish is:
- The patients GP is responsible for his care when he is at home
- The "palliative care" team consists of: the GP, District Nurses, Home Carers and Macmillan Nurse
- The District Nurse Team Leader seems to be the person who co-ordinates everything for us (equipment, carer visits etc). He deals with Social Services on our behalf.
- Various other people can be involved (physio/occupational therapists, alternative therapies provided by volunteers for Macmillan etc). You can arrange that via the Macmillan Nurse.
- Home care can do a certain amount (e.g. my dad has a stoma bag covering a laparoscopy wound and Home care will change and empty it) but there is a line where they have to stop and District Nurses take over. (E.g. my dad has dressings on his pressure sores, and Home Care are not allowed to touch that). They can also give out medication but only if it is prescribed in day-labelled packaging.
When my dad was discharged, the lady from Home Care told us (well, we asked when we saw reference to 6 weeks in a leaflet) that they are attached to the local GP area covering my dad and are there to provide short term support on discharge (for 6 weeks). But then she said what normally happens is that after 6 weeks, patients requiring more care are handed over to an Agency care team. She also advised us that in end-of-life cases, they usually kept the same care team throughout so as to avoid disruption and distress for the patient. It may be different in various parts of the country, though? We're in Widnes.We've been very fortunate in that my dad's GP is fantastic (she's given mum her personal mobile number if we ever need it) and came to see Dad within days of his discharge to check what care he needed and to make sure that he was getting it.
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