In her letter of June 24th 2008, Geraldine Johnston states that I had based 'my' decision not to accept Hari moving to adult services on a failed endoscopy at our local hospital.
The endoscopy attempt had occurred in an adult hospital but that was not the reason for any decision. This event had been used as an example of how things could and would go wrong, or be unmanageable, for Hari within an adult hospital.
Let's expand on the details.
In 2006 I had to take Hari to A&E at the local hospital as large amounts of blood were being aspirated from her NG tube. One doctor there said that she would have to be admitted to have an endoscopy. This was overruled by another doctor who sent her home promising to have the endoscopy arranged as an outpatient.
We chased it up. It was suggested to me that she didn't really need the endoscopy at all but it was finally arranged after I stood my ground.
The whole attempt at the procedure was problematic. It had been arranged without anaesthetic and it was clear that nothing could be achieved without the whole team and myself holding Hari down! They did not have an appropriately sized mouthpiece so Hari had a mouthpiece that was too large forced into her mouth, which was easily squashed as Hari's muscle tone increased due to the awful experience they were putting her through. The problems were worsened by the spray they had used on her throat.
I was amazed that the doctor doing the procedure seemed to be more concerned with his speed record than the need for a thorough investigation!
Eventually he gave up and announced that Hari would need to have the procedure under anaesthetic on another occasion.(In all honesty he really shouldn't have attempted to do it under these circumstances in the first place!)
I queried where the second attempt would take place and initially he insisted that it would happen at the same hospital - I was horrified! This hospital had no suitable back up for Hari should anything go wrong under anaesthetic and in such a situation she would have to be moved miles to a different hospital - if they could actually find anywhere willing to take her. The doctor swiftly realised that this was not an option!
Hari was again referred to the children's hospital where the endoscopy was safely performed under anaesthetic and severe oesophagitis was diagnosed. There were ulcers the full length of her oesophagus, ulcers that bled as soon as the endoscope came anywhere near them. I would load the pictures here for you to see but some of you may be squeamish and there is a lot of blood!
So much for the earlier claim by the local hospital that she didn't really need the procedure!
So there is clear evidence that Hari's care cannot be safely managed in an adult hospital.
There is also clear evidence that attempting procedures in an adult hospital causes distress and risk to Hari, with unacceptable delays as Hari has to wait to be referred back to the children's hospital when the adult hospital fails her.
Effectively Hari has to wait twice!
But I'm forgetting something! They won't actually see Hari at the children's hospital any more so she would only have to wait once - when the adult hospital fails her there is nowhere else for her to go!