There we were waiting patiently, for the notes and complaint file to be sent to the Healthcare Commission, when we came home one day to find a strange message on the answerphone.
The Assistant Chief Nurse at the adult hospital, Sue Jones, happily announced that she remembered us from when she had worked at the Children's Hospital. (We have no idea who she is!) She claimed that they had always been pleased to see us coming in because of my sense of humour.
Now that is extremely strange!
Any of my friends will tell you that my sense of humour is seriously warped - many of them can give testament to the fact that they have been on the receiving end of some very strange practical jokes!
The message continued. According to Sue Jones the Healthcare Commission had asked for another attempt at local resolution.
Now excuse me - but hadn't we been there before?
I telephoned Ian Howe, reached his voicemail and left a message.
Ian called me back and his explanation was that he hadn't asked for further local resolution. His explanation was that UBHT/University Hospital Bristol NHS Foundation Trust had misunderstood his request for the notes and complaint file. We did discuss the possibility of further local resolution but concluded that the independent review by the Healthcare Commission should go ahead.
I left the matter with Ian and so did not return Sue Jones's call.
A few days later Sue Jones left another message on the answerphone, in which she stated that she would write to me.
Sue Jones's letter was written on October 9th 2008, still claiming that the plan was for local resolution.
Firstly, she suggested another meeting that would include Anne Berry.
Now we very definitely had been here before - and it had failed!
In fact, we had been so unimpressed with, and offended by, Anne Berry's attitude and actions that we would not contemplate meeting her again.
Secondly, Sue Jones suggested that Hari should have an appointment with Stafford Lightman, endocrine consultant at the adult hospital, in order to get his opinion on the undiagnosed problem. She stressed that such an appointment would not mean a transfer of care.
Hari and I were both concerned with a further aspect of the letter. Sue Jones stated that she had '...corporate responsibility for patients with learning disabilities.' and the proposed meeting was to include a '...Learning Disabilities Specialist Nurse.'
Hari does NOT have learning disabilities!
But there they were, pigeonholing Hari into a learning disability category, simply because she has a physical disability which results in her using a wheelchair. This type of discrimination is unacceptable from what is supposed to be a professional organisation. With this attitude there is little hope that they will be able to consider the issues appropriately or adequately.
Ian Howe had outlined to me, the agenda for the proposed meeting. The focus, yet again, was to be transfer of care. There appeared to be no plan to discuss health care that was safe and appropriate for Hari.
We responded to Sue Jones's letter, explaining all our concerns and outlining two proposals, that we know are both reasonable and appropriate for Hari.
This strange event had begun to unfold at a particularly inconvenient time for us. Sue Jones' letter had arrived just as the Cheltenham festival of literature was beginning.
The festival is our 'annual pilgrimage' - we spend ten days whizzing back and forth to Cheltenham, relaxing and enjoying the numerous events - and Hari also hits the shops! After all the hassle of the previous nine months we were desperately looking forward to this break.
So over the first weekend of the festival, when all the other festival goers were laid on the grass in the gardens, relaxing and soaking up the sun between events, we were sat amongst them composing the response to Sue Jones's letter.
We couldn't enjoy the festival as much as we should have done. The stress and worry of the whole situation prevented us from relaxing and enjoying any of the events as much as we usually would.
So much for our desperately needed break!