'Big Brother' has got nothing on us!
Hari entered the hospital in January 2008 as a result of a chest infection.
In the A&E department we had the usual fuss about her age. There was clearly some dispute amongst the staff in the hospital about which hospital she should be admitted to. Eventually, after about eight hours in A&E and the attached observation ward, she was admitted to the adolescent ward of Bristol Children's Hospital.
Within a few days it became apparent that there was something going on, something that we were not being kept informed about. There were repeated attempts to offer us 'support' at home - 'support' that we neither wanted or needed - and we found this rather strange. We now know that the underlying plan was to completely discharge Hari from paediatric care; the aforementioned 'support' was being suggested in order to cover their backs should anything go wrong.
As Hari was not eating, due to her illness, a dietician became involved and she recommended pre-prepared nutritional feeds. It was necessary to explain to her and the doctors that the potassium and sodium content of these feeds might cause problems. I also informed them that we had been unable to get any sense out of the GPs on this matter (why are we not surprised!) and, therefore, had no diagnosis. Obviously some nutrition had to be organised but a feed with a slightly lower sodium content was selected.
Hari's sodium levels were low as a result of her chest infection. This is something that has happened before and is known as Syndrome of Inappropriate Antidiuretic Hormone. (SIADH.)
Over the weekend Hari improved again and as she was now eating I had no real concerns about her nutrition. (In fact I was pleasantly surprised that she was beginning to eat again so quickly.) I was confident that her oral, nutritional, intake would continue to improve.
However, the problems with the medical team got worse and it was clear that the allegations against me were continuing. I repeatedly asked for advice regarding the undiagnosed problem but no immediate explanation was suggested. Instead of making plans to investigate the problem, the medical team continued with their allegations to the point where Tom Hilliard recorded this in Hari's notes. He also recorded his reluctance to continue her care. He told me on more than one occasion that she should transfer to the adult hospital as the 'legal issues' were different. It seems that the plan was to use the Mental Capacity Act to override my input. The MCA does not actually apply to Hari, as she is not incapacitated under the terms of the act, to try to use it in this way would clearly be an abuse of the act itself.
Imagine the damage that this plan would have done to Hari! They would have used the act to insist on giving her the pre-prepared nutritional feeds that worsen the symptoms and cause her so much pain.
I found the attitude of the medical team to be increasingly upsetting. Tom Hilliard even accused me of not wanting Hari home! They appeared to be more concerned with their false allegations and transferring Hari's care to the adult hospital than with Hari's immediate needs. They didn't seem to notice that Hari's health, including the undiagnosed problem, should be their first concern and that ignoring an obvious medical problem does not demonstrate a patient centred approach.
Did they really want her left in constant pain - with the risk of the undiagnosed problem worsening?
All of this was complicated by the involvement of Judith Armstrong, Modern Matron. (May the saints preserve us from Modern Matrons!!) She seemed to always be involved, not giving us any real information, not improving Hari's care - as is the remit of the Modern Matron, yet contributing greatly to the problems that were arising. She recorded in Hari's notes that I was being obstructive and uncooperative. What is obstructive and uncooperative about asking for an undiagnosed problem to be diagnosed is unexplained!
The notes are something of a mine of information - a sort of 'diary room' for the medics!
I should not be surprised at the malicious tactics that were employed at Hari's expense. I should not be surprised that Hari's health takes second place to politics and policies. We have experienced this type of situation before, but had honestly believed that it was now a thing of the past - obviously not!
Eventually Hari was discharged from the hospital, although we did not feel that she was really well enough for this to happen. Her outpatients appointment was brought forward to the following week.
I had expressed concerns that, once she was discharged, nobody at the hospital would give any consideration to the undiagnosed medical problem. Tom Hilliard assured me that it would be considered at the outpatient appointment the following week - but he and I both know now that he wasn't telling me the truth!
The outpatient appointment was the eviction announcement!
Hari's medical care within paediatrics was brought to an abrupt end and no follow up had been arranged.