Let's return to the letters from Sue Jones, Assistant Chief Nurse/Head of Nursing at the adult hospital.
In her letter dated October 9th 2008, Sue Jones stated: '...it is important that we have a second opinion regarding your concerns for Har's undiagnosed endocrine problems.'
Well that's was a first - they'd been telling me up to now that the symptoms weren't possible!
Sue Jones also stressed that such an appointment would not mean a transfer of care.
In my response I stated, in relation to this issue:
'The offer of a second endocrine opinion seems rather vague in intention. At this point in time we cannot be sure that the undiagnosed problems are endocrine in origin. (Unless a diagnosis has already been ascertained and deliberately withheld by the trust!) This suggests a limitation on the process should no endocrine cause be found. Clearly this is not in Hari's best interests as the diagnosis must be identified, whatever the origin.'
In her letter dated 27th October 2008, Sue Jones informed me that she had made the appointment for November 5th 2008.
The irony of the date has not escaped us - Fireworks Night indeed!!!!!
Hari did not want to attend this appointment - she felt, as I did, that this was just part of the deceptive process of pushing her health care into the adult hospital. However, after some persuasion from me, including various promises about what could and couldn't happen at the appointment and my assurance that, as Sue Jones had stressed that this was not a transfer of care, we would only be attending to discuss the undiagnosed problem, she agreed to attend.
We also realised that, in the light of the previous false allegation that Hari was a vulnerable adult not attending appointments and the events surrounding the secret appointment in August which nobody had notified us of, this was a hoop which we needed to jump through for our own protection.
A short recap of the missing endocrine link reveals:
1) Tom Hilliard recorded in Hari's notes: '...I strongly feel that this is not an issue that we need to investigate.' and: '...this does not represent a significant medical issue at present and that it can be followed up by endocrine(Dr. Crowne)' He told me that Liz Crowne could consider this problem at Hari's outpatient appointment at the Children's Hospital, which took place less than a week after Hari's discharge from the ward in February 2008. (See 'The eviction')
2) Liz Crowne told me that Stafford Lightman could consider this issue in the adult hospital as fluid balance is his interest within endocrinology.
3) Geraldine Johnston stated in her letter that this issue could be assessed under the adult endocrine team.
So what of the oracle Stafford Lightman?
I quote..."It's not my speciality."
So much for the missing endocrine link!
We are not surprised!
He told us that he knew of no condition related to sodium/potassium intake that would cause pain. His plan, he claims, is to talk to his colleagues to find somebody who will be interested.
Well we've heard that one before!
Are Hari's chances of diagnosis totally dependent on somebody being interested?
Nothing new there then!
We will wait for the location of an interested doctor - but not too patiently - as we have no reason to believe that anybody will be interested - after all - nobody else has been interested so far!