Finally!

[serenfach]

Back in July I had a response to a FOI, which I challenged. I sent out numerous emails to different NHS governing bodies. I met a brick wall. Today an email turned up out of the blue from my Health Board. It only took them five months.

The complaint was that the blood testing for thyroid did not follow the NICE guidelines in that if the TSH was abnormal, the T4 and T3 should be done, and to enquire who had made the decision not to test T3 and why. .The first sentence shows how thoroughly they read my complaint.

Thank you for your e-mail with regard to Thyroid stimulating hormone (TSH) testing not being available.

Brick wall, head!

The bit I need help with is this:-

As neither liothyronine monotherapy nor combined levothyroxine and liothyronine therapy are considered to be standard care (as there are no clinical trials indicating that using liothyronine is superior to levothyroxine monotherapy) there is no all Wales protocol regarding monitoring of these.

See how they twist it? I do have papers showing that combined therapy works for some, so they will get those, but because it is not considered standard care, they are not going to test it! They also repeat that TSH is the gold standard. They say they test T3 if the blood taker says the patient is taking Liothyronine, but this is not true.

We do not refuse to test patients who are prescribed liothyronine but a TSH within the reference range indicates that the dose of levothyroxine, liothyronine or combined therapy is appropriate and no further testing is indicated.

I have been refused a number of times, as I am sure you have.

So has anyone got a paper showing any patients on T3 only are well?

Not once to they mention how they patient may feel, or the quality of life! We are not a (TSH) number!

I may have to put the red wine bottle down before I respond! Cheers!

[Marymary7]

Well done you for trying. This attitude and ignorance on their part makes my blood boil! When will they come out of the medieval period! Women’s medical treatments are so sadly lacking. I’m sure someone will help with the papers you need although research is probably not that great. So many of us have to self treat in order to stay alive and to actually have any quality of life.

Good luck and thanks.

[arTistapple]

Oh yes we are supremely used to the “twist”.

After years of most patients only wanting an apology for what the NHS has done wrong, which is/was like getting blood out of a stone; now the advice is something along the lines of - “could you first please take care to couch your complaint in a way that does not offend us?”! I have been told to express my complaints as “training opportunities” for staff. The inference being that apologies can be more freely given if you handle it in this cowering manner and an expectation (if it gets that far) that an apology will be enough. Wrong! The culture has not noticeably changed from where I am standing. It’s only because the country has become more litigious that anything has changed at all - not that any outsider would notice. The NHS pays out obscene amounts every year year to people (or families of) who have been damaged by NHS treatment.

Be Kind.

One of the things I found loathsome working for the NHS bubble was watching how management handled complaints from the public, usually the families of the deceased as opposed to patients themselves, it was, shall we say being ‘kind’, incredibly small minded.

These are not the clever people I believed in for most of my life. Working in these jobs it’s all about ‘watching your back’ and if you can’t work like that, you just won’t survive. Fly or cunning are better descriptions. It works every time when patients and their families still expect honesty in their grief. We are totally wrong footed. I am a total shmuck for this myself, even although I have watched too many incidents in life.

If I ever get my brain power back ……

[Newmummy82]

I have written a letter to my GP refusing blood tests which only test TSH stating they are not fit for purpose. I get my own private tests, which is galling considering I’m paying my national insurance already.

[TSH110]

Gold standard garbage