For some time now we have been aware that political infighting and internal politics have been raging, amongst doctors and managers, regarding the cut-off age for treatment at the Royal Hospital for Sick Children Bristol.
Some want a cut-off age of 16.
Some want a cut-off age of 18.
Some want exceptions to the cut-off age, some do not.
We have been told on numerous occasions that there are exceptions to the cut-off age and that Hari is one of them. Now that seems to have been rescinded and Hari appears to have become the victim of the internal politics.
Hari's health care should not be decided by ANYONE'S politics! Plans should be based on what is right for her as an individual; taking account of all her needs including, most importantly, her safety. The health trust has plans for the creation of a Young Adult Ward within the adult hospital and clearly this would be a safer option for Hari than just admitting her to general adult wards. It is incomprehensible that they are trying to transfer her care before this facility is available.
Hari currently has an undiagnosed health problem. Her life would be a lot easier if a diagnosis were made, so that appropriate treatment and/or lifestyle changes could be initiated.
The problem is this: small increases in potassium and sodium in Hari's diet, cause a dramatic reduction in urine output with associated pain levels that can make her life intolerable. However, her creatinine levels appear to be within the normal range. We are currently able to control the symptoms by carefully monitoring her diet, ensuring that potassium and sodium input is kept at a level low enough to avoid pain. However, with no diagnosis we have no official guidance on this and we are simply controlling the symptoms - not treating the cause.
Doctors have refused to investigate and diagnose this problem and employees of the health trust, University Hospitals Bristol NHS Foundation Trust (used to be United Bristol Healthcare Trust, UBHT,), have sought to blame me, referring us to Social Services, alleging that Hari is 'at risk' due to the fact that she does not have pre-prepared nutritional feeds. The truth is that the potassium and sodium levels in these feeds result in the symptoms worsening, which has an appalling effect on her life due to the pain levels involved. The doctors and other trust employees are aware of this but insist that it 'is not possible' and continue their allegations against me.
Keeping the potassium and sodium input at a reduced level has been extremely beneficial to Hari. She is now pain free for the first time in five years; her life has improved dramatically in many ways as a result of this, indeed she appears to have 'got her life back'.
With regard to the lack of diagnosis, Hari's diet and the false allegations against me - I am pleased to announce that there are a lot of people looking very stupid right now - but I'm not one of them!