Carrying on directly from the last entry .... Mark spent some time in his wheelchair on Tuesday with no immediate problem. Through that night he was back on Morphine every 2 hours for the pain. Wednesday in pain most of the day and when the Physio came to get him up, he was in too much pain to try.
Thursday morning and finally a visit from the Consultant in charge of Mark while he's in BRI. Mark was supposed to discuss his sending Marks notes to the expert on syrinx in Birmingham, but the conversation got railroaded with talking about sending him home. Somehow, don't ask me how, I wasn't there, they got onto the subject of more Physio at Pinderfields. Well that got some action, Mr Taggart (BRI consultant) rushed off determined to get him back into Pinderfields. Think Mark was left a bit open mouthed, he's not used to not having the last word!
Thursday afternoon he had another visit from the Psychologist, she had just arrived before me at visiting time. We discussed the difficulty of getting Mark referred for further investigation, particularly Mr Raza's reluctance to refer him to a specialist in Birmingham who is 'the man' for anything to do with syrinx. She understood there could be professional rivalry or ego involved, yet again the patient is not at the centre of any decisions needing to be made.
Thursday afternoon. The Physio came back to try and get him up again and Mark agreed. It's not like he wants to be lying in bed day after day, week after week. So they get him up in his chair. He was in less than 5 minutes when it happened again. Excruciating pain in his back. This time with medical professional witnesses. They poked around his back and they all concluded it was coming from exactly where Mark has been saying all along and that's in the area at the bottom of his fixture. However much I was upset that Mark was in pain again, I had to see this as a good thing, someone who couldn't be ignored had now witnessed it and documented it. More morphine for poor Mark.
Behind the scenes, Paul Smith, CEO of Spinal Injuries Association had a long chat with Mr Raza (Pinderfields consultant) while they were both at houses of Parliament, trying to argue against the closure of Pinderfields Spinal Unit. Although Mr Raza is not altering his opinion on getting a second opinion about his syrinx, he is very much aware there are a lot of people now watching how Mark is treated as a spinally injured person. Maybe, just maybe it might have a positive outcome as to how others are treated when this is all sorted. It patently clear getting anything other than basic help in our NHS is not working. With the changes now coming in, it's only going to get worse as everyone protects their own little fiefdom.
8.45 last night he was packed up and sent off to Pinderfields, one of the ambulance guys took him from Airedale(where he was in ICU) to Pinderfields, another was on duty, taking him from Hewenden to BRI TWICE. We did have a giggle about that. He was finally settled in bed just after midnight.
Will be interesting to see what happens now that Mark is in front of Mr Raza and Mr Raza knows there are a lot of people watching the outcome.
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