There's a slight lull in proceedings right now as we wait patiently for a few things to happen.
We're waiting for Loraine Darcy's response to the further questions we have submitted regarding the telephone calls between Anne Berry and the Healthcare Commission.
We're waiting for the independent review by the Healthcare Commission to happen!
The copies of Hari's notes and the complaint file should have been sent to the Healthcare Commission, by UBHT/University Hospitals Bristol NHS Foundation Trust, by last Friday. Nobody has contacted us to tell us whether or not these papers have actually arrived.
We're still waiting for the diagnosis!
Well, in reality, we're waiting to hear anything at all from the oracle, Stafford Lightman. Has he managed to find a doctor who is interested enough to be bothered to investigate the undiagnosed?
So whilst we wait, it seems an appropriate time to tie up a few lose ends.
When Hari was an inpatient and I had to tell the dieticians and doctors about the undiagnosed problem, I told them that we had been unable to get any sense out of the GPs on this issue.
Let's expand on that then!
In August 2007, having realised that there may be a connection between Hari's sodium intake and the urinary problems and pain, I took Hari to the GP. We saw Ashraf Yousef and he decided that he had no idea what the problem was.
Now then - when a GP is unable to diagnose or treat a problem it is his/her job, indeed their duty, to ensure that the patient is referred to somebody who can do what they can't. Instead of referring her to a specialist Ashraf Yousef insisted on writing to Liz Crowne, Hari's existing endocrine consultant, to ask her to see Hari earlier than the planned appointment in November 2007.
Hari's notes record that this letter was sent on 3rd September 2007.
We then had a series of phone calls from the endocrine team - lesser gods of course!
I explained to them, repeatedly, that as we had gained substantial improvement by reducing Hari's sodium intake I was not about to make things worse and cause her pain by increasing it again for the sake of a food diary.
They did not appear to be listening!
Nothing new there then!
I then received the standard 'back covering' letter from James Bursell outlining what he thought was the content and result of the last telephone conversation. Apparently he thought I wouldn't talk to him on the phone - actually I'd hung up in total exasperation! Heavens - did he carry on talking to an unconnected phone and think I was listening to him in silence without responding? I wasn't there at all!
He sent a similar letter to our GP. He told our GP that he had not brought the appointment forward.
Nobody told us that!
The letter to me concluded with: '...please do not hesitate in seeking medical advice if you have any acute concerns about Hari's health.' I copied the letter, underlined the last sentence, wrote 'precisely what do you think I've been trying to do?' and sent it back to him.
I received no response!
During the November 2007 appointment the issue was mentioned vaguely but it clearly did not fit the main agenda and was taken no further.
Although there was a great improvement, due to reducing Hari's sodium intake, there were still some glitches but there was no real indication as to why these glitches occurred.
On one occasion the glitch was quite severe and I realised that Hari's fresh juice, at the health food cafe, that morning had contained significantly more apple than usual. The only thing I could think of that might have caused this glitch was the high potassium content of the apples. (When I told the dietician about this she immediately suggested that it was the potassium!)
So the situation seemed to be that increased sodium intake reduced the urine output and caused pain, whilst increased potassium intake stopped the urine output completely (sometimes for over 12 hours) and caused even more pain.
As our request for a referral had already been turned down at the GP surgery I decided to e-mail the practice manager and ask him to ensure that somebody made the referral. We felt that we had better things to do with our time than sit in the waiting room for ages - only to be refused again!
It turned out that the practice manager was away but his stand-in contacted me and suggested a telephone consultation with one of the GPs.
As a result of this I spoke on the telephone with Annette Bradley and I explained what had been happening with regard to the sodium/potassium intake. She said that she would make the referral.
Eventually we realised that the referral had not been made and the practice manager agreed to chase it up.
The referral has NEVER been made!