Tuesday, April 14, 2009

The Current Situation.

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 Now that seems to have been rescinded and Hari appears to have become the victim of the internal politics.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!

1 comment:

Anonymous said...

my son who is now 33 was born with twisted high arched severely clawed toes.i fought with doctors for most of his childhood knowing that there was something seriously wrong with him but i never knew there was a connection to his feet with all the symptoms.when we moved up to scotland i decided to try see if i couldreach the brain of a new doctor. he accussed my 10 yrs old of deliberately clawing up his feet and told me he would refer me to a psychiatrist as i obviously had muncheuses syndrom by proxy. i had to go home and look it up.one year later a relative with the same feet told the specialist that she couldnt go through any more operations to straighten her deformed feet that she was finished with hospitals. her specialist got in touch to ask her to come in that he'd accidentally stumbled across a then little known genetic disease and the feet were a major characteristic.it was a nerve and muscle wasting disease.after referals to the duncan guthery genetic institute he was diagnosed along with several other relatives.NEVER DID I GET AN APOLOGY FROM THE ARROGANT DOCTOR OR THE SOCIAL SERVICES.i hate the medical profession and social workers with an anger that won't go.i feel so deeply for you as i read your story. i turned to raw food vegetarianism and and for my own condition too and especially pain have never looked back.the amount of stuff from diabetes to athsma to the symptoms from all this disease has been improved to about 80% in a year and my diabetes has gone .green juices are a staple now. check out mike adams an investigative journalist at naturalnews.com. you and hari are such strong people . take great care of one another and my thoughts are with you