Update – no news!

I haven’t been blogging much lately for a number of reasons. Firstly I feel a bit worse, the fatigue is maddening and making day to day life troublesome. I am getting help getting the kids to school and with the general ferrying around but all the normal household and parent stuff is still down to me alone – treading water here!

Secondly there seems little to say at the moment. I have my date for the op so no need to be venting my frustration on here at any lack of progress or stupid delays. It’s just about counting down the days right now. I am allowing myself to make plans, to imagine how post op might be and what I can do again once fixed and back to some normality. I had planned to ignore those thoughts as a kind of self protection in case the op didn’t work but I am only human. That notorious light at the end of the tunnel is getting bigger and no harm in a bit of positive thinking now is there?!

I have been keeping busy with some bits of work on the better days and it’s been good to think of other things for a change now the ‘battle’ has temporarily ceased.

However, I have started the ball rolling with a formal complaint to my local hospital about my treatment there. I have no appetite for a legal battle and seek no compensation but I don’t want someone else to suffer the same mistakes in care that I experienced. In my mind it is very simple:

• The Endo there insisted my symptoms had no connection with any endocrinological condition that I had been diagnosed with – I have that in writing from him.
• He had diagnosed me with Primary Hyperparathyroidism and then did nothing to treat it apart from faff around with vit D for a while – and he made a mess of that. National guidelines are for a patient to have DEXA scans to check for bone damage and urine and blood tests to check for kidney damage plus scans to see if the problem parathyroid could be located – he did not arrange to do any of these.
• The guidelines are also very clear that any patient under 50 should be operated on – he told me it wouldn’t be in my interest to have an operation as the risks were ‘too high that it would make me permanently hypocalcemic’.
• His insistence that my symptoms (which are textbook for this condition) were not linked to having Primary Hyperparathyroidism resulted in unnecessary neurological tests and my GP’s conclusion that it must be down to ‘depression or stress’ and therefore caused a considerable delay in my treatment.

Am I right to complain? This is a man who has trained to be an endocrinologist and should know how to treat my illness – if I can google it and work it out for myself then it should not be beyond him to get it right. He should be up to date on national guidelines on treatment and there is no excuse for the mistakes – I have very clear test results and symptoms, I am a very straightforward case.

Why complain? As I say, this is to stop this happening again to the next patient – maybe someone who doesn’t waste too many hours on their computer looking things up (my GP’s comment) and accepts what they are being told because a doctor couldn’t be that wrong.

I don’t relish it, I’m not one for confrontations and I have no wish to get somebody into trouble – but what other choice have I got?

Thank you all again for the messages and comments you send, forgive me for not always replying or taking forever to get back to you. I do read them all and it is good to hear all your news and progress too – my fuzzy head stops me from keeping on top of basic day to day stuff so sometimes I just don’t get round  to replying or simply forget you got in touch – huge apologies.

Chin up everyone still on their path to treatment and cure – we’ll get there xx

Advertisement