Today I received several missed calls from Steve at about 12:00 and a couple of text messages that only I could decipher. I took them (and was correct) to mean "get over the hospital asap as the "Doctor wants to talk to you about what you WANT for my discharge" (I went to visit him at my normal time).
I have been brought up very well, and to be respectful to those in authority. Police, Doctors, Bank Managers ...
In this instance I have no respect for these ward Doctors. Just a few day ago I was told that Steve is fit for discharge immediately and is in fact faking his level of immobility due to the fact that when the Doctor went to see him, he was playing on his "games machine".
Steve does not have and never has had a games machine. He could quite likely have been trying to send a text message to me saying "get me out of this hell hole", but he wasn't successful in that.
Every day, these ward Doctors go and see him, they tell him he has no clinical need to be there (hoisted on a ratio of 3:1, oral morphine every 2 hours in addition to the other 3 types of muscle relaxants he's on - among other things, inability to even assist in putting a t-shirt on or to drink a cup of tea without assistance or accident does clearly not constitute a clinical need) and they put him under pressure to leave. Immediately. Nothing would please him more, but as I keep explaining to Steve, it's not reasonable, fair or right that I have so much unsupported responsibility in taking him home without the prior agreement of multiple agencies.
Then, when he transfers this pressure on to me, it inevitably ends in tension for us. It appears to Steve that it is ME keeping him in hospital It's very frustrating and very unhelpful.
Also, my big beef at the moment is that there is only one thing known about Steve's condition. It is caused by areas of swelling in the brain - Encephalitis, I believe they call it. Despite this being the only knowledge they have of his condition, he has not been MRI scanned or CT scanned for a year.
Another thing that happened today , other than grovelly email back from the complaints people at Aneurin Bevan Health Board saying it will be escalated, essentially, was an email back from the London NHS Neurological Hospital. They say that Steve does NOT need a second opinion locally (we've been waiting 4 months for an appointment for a 2nd opinion from a Neurologist in Cardiff called Trevor something - we don't even have an appointment yet) but that simply the G.P. can refer Steve to them.
If this turns out to be the case I may have to consider legal action for not telling us the correct information and keeping him waiting until he is so gravely ill.
On the plus side, he had 2 visitors today, he was relatively lucid - his PTSD is playing up and confusing him (he's severely depressed but no one's paying any attention to that) and when he wakes in the night he thinks he's at a field hospital in Bosnia. The source of his PTSD.
I left the Senior Nurses a note to pass on to the Doctor. I told him that regardless of the fact that in HIS diary there was no record of it, on Tuesday at 13.30, there is a MDM (Multi disciplinary meeting - we (social worker and I) arranged one 2 or more weeks ago, and no clinical staff bothered to turn up) to discuss the plans and requirements for his discharge. Until then I'll be discussing it with no one.
More to follow, lots of ideas for campaigning and raising awareness going on. I look forward to telling you about it shortly.