After the farce with Tim Chambers and his refusal to investigate Hari's lack of growth, we had to find another option.
I read an article about a doctor, Michael(GM) Besser, at Barts in London. Our GP agreed to do a referral and Hari was seen at his outpatients clinic. This was a joint clinic with Martin Savage and they seemed to be promising us the earth and more. They were unimpressed with the care Hari had received in Bristol and proposed taking over all her care. The plan they put forward was that they would get her notes from Bristol and then admit her to the Queen Elizabeth children's hospital in Hackney to investigate her problems.
We waited.
And we waited.
Eventually I decided to chase things up and on speaking to Martin Savage realised that he didn't seem so keen now he had 'spoken to Bristol'. However, he did still agree to see Hari and we set off for what turned out to be a six week stay in London.
They ran a series of tests but strangely enough there was one test that they refused to do - being adamant that it couldn't possibly be that.
They told me that the heart surgery she needed would be done before she went home - then changed their minds and refused to do it.
At the end of the admission I was assured that we would be sent a follow up appointment. The appointment was never arranged. Hari was left with no health care besides the GP.
Clearly they didn't want Hari as a patient - well their enthusiasm had dwindled after they 'spoke to Bristol' - so we were not really surprised - we were getting used to being fobbed off by people - and getting the message that people didn't think Hari was worth bothering with.
Seems to be a familiar pattern from some quarters with regards to disabled children.
Plenty more on that subject later!
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