A Little Future Planning And Support - Or Not!

Hari's general health care was still something of an issue. There had been no follow up from the team in London - although this had been promised. We were in a sort of limbo - the ITP was monitored on a casual basis but there was no formal planned care at all.

During one of Hari's brief admissions associated with the ITP, the ward sister spoke to me about outpatients follow up. She wanted to know if we would turn up to appointments with Peter Fleming if these were arranged. She seemed to think that we had not turned up to his appointments in the past.

In fact this had not been the case. We had always turned up but had frequently had to leave without being seen, as his outpatients system didn't involve seeing people in order of appointment time - this resulted in people with later appointments being seen first and people with earlier appointments having to wait hours. Often the wait was so long that we had to leave in order to be home in time for my eldest daughter leaving nursery (nursery had an organised 'school run' so that she was brought home on their transport at a certain time) - did he really expect me to leave a pre-school child waiting on the doorstep - maybe 'latch key kids' were in vogue in his social circles!!!!!!!

Additionally we were unimpressed with the attitude we had encountered in Bristol regarding Hari's future - doctors didn't seem to think she had one. Apparently my expectations of any possible progress were too high and I didn't understand that she was worthless with no prospects of ever thinking for herself or achieving anything in life at all. Indeed, in his letters to our GP, Peter Fleming frequently referred to Hari as having a 'poor long-term outlook'.

Don't you just love it when- they're wrong!

So - the outpatients problem was clearly not one of us not turning up, but more about whether or not the direction of the doctors' focus was appropriate or useful for Hari.

The ward sister told me that there was no point in giving us an outpatients appointment if we were not going to turn up - but that they would organise an appointment if we would turn up.

I suggested that if Peter Fleming intended to use words like 'future' and 'potential' in reference to Hari then it would be worth going to appointments, but that if he didn't think she had any future or potential then appointments would be a waste of everybody's time. The point being, that Hari needed doctors who would not discriminate against her because of her disability and who would be supportive in providing the care and treatment she needed in order to acheive her full potential.

They NEVER arranged the outpatients appointment!!!!!

Now why didn't that surprise us!!!