Then I got an independent advocate and I was finally able to feel like I had a voice about my care and what was and wasn't working.
My advocate arranged a meeting with Practice Manger of my GP surgery and it was a really positive meeting.
The Practice Manger was going to investigate a few things and I also swapped to a different GP.
"Traditionally, palliative care towards the end of life has been offered mostly to cancer patients, but must now be offered for a wider range of serious illnesses" - WHO Palliative CareBut my GP did say that he would have a look to see if there was anything out there for me and he would also read through my notes so he can familiarise himself with my case.
Unlike my old GP who just sort-of left me my new GP now want to see me every month for half-an-hour to catch-up and keep and eye on things and see how I am.
Hopefully as we get to know each other I hope I will start to feel more supported from a primary care level and it will mean I will get some care in-between my London appointments.
Complex Care Team
A long while ago I was referred to to Complex Care Team and very little happened. When my advocate got involved, like with my GP, she stated to get my care sorted and moving. After that I spoke with my key worker twice and she organised a MDT (Multidisciplinary Team) meeting. Usually with them I'm invited but today was a 'professionals only meeting'.
My advocate could only briefly update me as she had another meeting but they're going to have monthly meetings to keep my care flowing and hopefully they can arrange it so my new GP can attend the next meeting.
The GP practice is going to call me every week to see how I am and my mental health care co-ordinator is going to call me weekly too.
They're also going to keep in regular touch with he euro rehab centre in Leeds to ensure that I get an assessment for there as soon as possible and then they will mean they can start arrangements for getting me a bed (but I'm trying hard just to take things one step at a time).
Also, they're going to start arrangements for putting together an Advanced Care Plan for me, so when people like the paramedics turn up, or I go into hospital there's detailed instructions of what needs doing and how best to care for me and my care needs and wishes.