Her health care quite rightly continued beyond the age of 18 in paediatrics, due to the complexity of her needs and small size. It would have clearly been inappropriate and dangerous, indeed impossible, to transfer her health care to an adult hospital. To do so would have placed Hari at unacceptable risk for a variety of reasons; most of them insurmountable. Risks with anaesthetics, risks with dosage miscalculations, risks in relation to appropriately sized equipment being unavailable in emergencies, and the risks associated with Hari being unable to defend herself in this environment.
Currently Hari is being refused medical care in paediatrics, regardless of the fact that the risks to her in an adult hospital have not, and cannot be addressed. The outcome of this refusal to treat Hari in the event of illness, even in an emergency situation, is that she is effectively being denied appropriate health care. If she becomes ill there is no solution. Paediatrics will refuse to treat her and an adult hospital cannot treat her without unacceptable risks.
This has been the situation since February 2008 -bureaucratic wheels move slowly and are more concerned with their own rules and regulations, than the individual who's needs they are required to address!
However, we are not surprised! Her life has been a litany of mistakes and refusals to diagnose and treat her various health problems. Indeed it was such a refusal to diagnose and treat that resulted in her small stature - but I will keep that particular story for later! So having created the problem in the first place, the health trust refuses to take responsibility for a situation that is a direct result of their actions.
Hari's life, or that part of her life that lies within the NHS, is actually a reflection of how anybody's health care could be dictated by the politics and policies of managers, or indeed by the self-opinionated attitudes and egos of individual doctors. Once such decisions have been made, decisions not based on patient need, it is practically impossible to get the decision maker or any other doctor to put things right.
Hari is Hari- but her story could be yours, your child's, your grandchild's. We all need to be aware that health care provision within the NHS is not always based on patient need.
This blog is not a tirade against doctors in general. ( Although sometimes that would be tempting!) What this blog contains is a factual account of how one individual has been treated (or not!), by a system that allows managers with no medical knowledge and doctors to choose to neglect the needs of a patient due to personal opinion, politics, egotistical power trips and blatant discrimination.
Not all doctors opt to make these despicable choices. There are some good guys in the system - some of them may even get a mention - but then so will the bad guys!