Navigating Care is like your worst train journey that never happened.


This simple ongoing concern

Is becoming a painful and pointless return
The things that they're sick of
They're scared to be rid of
All I know is we've lost control he said
I lay no blame but it's not the same she says
Neds Atomic Dustbin. Trust.

10am. Monday 19th October. 
My care plan states any phone calls regarding my care should be to my wife, Amanda. My mobile rings. Call I.D. Unknown. Amanda’s mobile then rings. It’s the Community Mental Health Team. Today’s appointment with my new Consultant Psychiatrist has been cancelled due to unforeseen circumstances. 
No explanation as to what may happen next, will we get another appointment through the post? Is there someone else available to review my medication and prescribe the additional anti depressant my Community Mental Health Nurse recommended after her visit last Tuesday? Nothing. Just cancelled.
Feel totally deflated. It would have been my first appointment with the person who will be overseeing my care and treatment for the foreseeable. I’d started preparing for it over the weekend. A mix of hope, in being able to feedback being able to spend time on my own over the weekend, for the first time this year, and discussing the potential of having a personal trainer. Coupled with anxiety, at knowing I would have to retell my story and revisit for the 23rd time, since September 3rd, some very very dark times. 
Not the first appointment to ever be cancelled by the NHS and by no means the last. I hope the Consultant is okay and there’s no serious reason behind the cancellation. 
But. It just feels at each and every step so far, anything that could go wrong, has gone wrong. I’ve documented much of my journey through these blogs and have spoken with various senior managers and governors of TEWV. They must be at the point of wincing when I tag them again in the blog. Sorry! But I can only say how it is.
 It’s exhausting, not just for me, but my wife too who has to juggle her responsibilities between working full time from home and representing me as my advocate or carer at various appointments.
We can only sit and wait to see how quickly a new appointment can be made or whether there is a plan to get another professional to review and prescribe medication. 
Meantime I’ll look forward to Gary Numan’s live Q&A tonight. Hopefully my planned attendance online won’t jeopardise it happening!
Sigh.
Love and tier 1 hugs.
Blot x



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