Look After The Pennies And The Patients Can Look After Themselves!

So there we were. Mid 1980s - Hari was about two, not growing as she should do and with no diagnosis for that. There were constant implications and allegations that I didn't feed her enough and an attitude from some hospital staff that disabled children should be left to die. I was learning fast - and aware that if Hari was ever going to get the health care she needed I was the only one who was going to be prepared to fight her corner.

The situation with the ITP was ongoing. The treatment used was following a predicted path of being less effective as time went on. Eventually it was stopped completely - although I felt it was stopped too soon.

The system they had devised for keeping track of Hari's platelet levels had worked well. On the way to physio each week would go to A&E, the blood test would be done and the results were ready by the time we left physio. Even without the treatment the tests were beneficial to Hari; if her levels were low then at least I was aware of it and could be extra careful with her to avoid bruising and bleeding.

Then they decided that this was about to change - without consulting me at all.

As usual the blood was taken before physio and we returned to A&E afterwards to get the results. The nurse who spoke to me was usually lively and engaged in a little bit of banter. On this last occasion she was rude and abrupt and refused to tell me the results! She announced that they had the results and that the doctor (a lesser god) was certainly not going to tell me what they were!

I was shocked at her attitude as it was unacceptable and unlike her - but I realised that she was acting on instructions and very uncomfortable about this situation.

I went back to physio and used one of their phones to bleep the doctor concerned - cheeky I know but I was not simply going to walk away. I needed to know what was going on and Hari needed me to do this.

When this lesser god answered his bleep he was equally rude and initially refused to tell me the result. After a little persuasion he did reveal the result but what followed was unbelievable. He announced that there would be no more blood tests and told me that I was abusing the lab service!

Now Excuse Me!

All I had done was follow instructions from the medical team - I had been told to attend with Hari for the blood tests and I had done so. Clearly I was not abusing the lab service at all - I was simply doing what I had been told to do - indeed if I hadn't done so I would have been criticised for that.

It soon transpired that at the end of the previous week there had been a multi-department meeting to find ways of saving money as they were way above budget - Hari was simply a budget cut. Despite the fact that her platelet levels could become dangerously low and despite the fact that her disability made it difficult to spot the symptoms until they were very low (she did not move around like children her age so warning bruising at low but acceptable levels was unlikely), Hari's needs were to be ignored in order to save a few bob on the budget.

Nothing new there then!