Challenging the decisions.....

[Lindylanka]

Is there no way to challenge the decisionns our GPs make? If they decide against treating us aren't they withholding treatment, and shouldn't there be some kind of protocol for asking why, whether it is collectively or as individuals?

[Poppet11]

There are processes but they are not effective.

The ones which are in place are based on the principle of 'customer complaint'.

So, someone who is having essential medication withheld goes through the same process as someone who is complaining about a receptionist being rude.

The NHS has designed a system which is founded in the principle of not believing the patient and getting the patient to 'prove' they have justifiable reason for challenging a GPs decision.

It is based on protectionism, not on the progression of improving clinical practices.

You can see this reflected in the wording used by staff from the out-set.

Responses to 'complaints' will incorporate wording such as "If you FEEL you could not make an appointment for 4 weeks," or "If you BELIEVE the surgeon removed the wrong leg," it's right there at the start, the 'art' of making the patient defend their position.

They will also respond that they have procedures in place - like Suggestions books placed on reception. or practice complaints procedures. All totally worthless.

In the case of b12 deficiency it's even worse, because whereas another doctor might be slightly miffed by one of his colleagues bringing the profession into disrepute by missing a patient with diabetes, most doctors 'believed' (my turn!) they understood the condition. They thought it was a done deal. So, even if you go for a second opinion or whatever to get your 'evidence' the second doctor will be just as big a numpty as the first one. They side with the first doctor and the case against you strengthens. Because it is a case against you - the system attempts to put the patient in the position of permanent defence.

I've argued for a while that we should have a different system which I'm not going to go into here, but while the protectionist parasites infest the NHS and continue to drain it of all resources whilst simultaneously restricting medical development, then it will continue to decline at all levels.

[Lindylanka in reply to Poppet11]

Thank you. This is my experience too. There is lipservice to patient partnership, the reality is far from. My GP is apparently ok with me going downhill and having no proper life, but sees no cause for concern, because if she did something about it I might have and adverse event and then she would be liable, but somehow she's not liable for the adverse effect of failure to treat me or to even follow up the mysterious decline I am in!

Every time I read of another person going through this I wonder how it can be changed. I'm horribly aware that it isn't just us, but could potentially be people who've never had a low b12 test and who now have other labels.

[Poppet11 in reply to Lindylanka]

You can, in a way, sum up the position both from the clinicians and from the administrators and that is to 'deflect challenge.'

They do this at all costs - even to the cost of medical advancement.

Even, presumably, to the cost of their own health and the health of their children.

The guidelines which are in place are followed in accordance with procedure but fail to apply the specifics. So, you might have a situation whereby a complaint prodecure is followed in practice and a second party is brought in - but that second party fails to examine evidence and fails to provide a detailed response, only providing an outright denial.

So, doctors, particularly in the UK, know they are going to be protected from their short-comings being highlighted all the way down the line.

Which makes me wonder why they are really in the job and if they are fit to be doing it in the first place?

[Lindylanka]

Have just heard that the tree month trial my Neuro requested nearly 8 weeks ago has been agreed on in principle, but in practice they need to have his personal assurance that he will see me frequently during that time and monitorme to see whether ha can observe any clinical changes. Time estimated to get a reply, at least 2 weeks. My guess is I'll get nothing till new year. Bang go both Christmas, and any chance of real progress by the time I am due to go away in early Feb. My last shot barely touched the fatigue and balance issues, I'm back to where I was a year a da half ago, but worse.

I'd self inject but don't think I'd manage it without help.

This is perhaps the most dis empowering experience of my life. NHS newspeak doesn't help.

[Hidden]

Self injecting gets you out of this madness, people have found even vets to help them, it is mad that one has to go that far just for a vitamin injection, to much does no harm but to little causes so much harm. Put all your efforts into finding some one to help you inject, apparently subcutain is not that difficult and it is easy to get supplies. Yes it will cost more, as you have to pay for it, but its not terribly expensive. Or try other options see:

pernicious-anaemia-society....

Tell your GP you are now being forced to try other routes to feel well, make it his/ her responsibility.

[Gambit62 Administrator in reply to Hidden]

I totally agree with you Marre. For me one of the worst aspects of where I was back at the start of the year was feeling totally at the mercy of my GP - who though they were very caring was also woefully ignorant. I really wasn't in a place to tackle the ignorance - and just needed to get better ... and actually feeling back in control of my life because I am treating myself and not reliant up my GP has been such a relief.

There is so little information being given to people about what they can do to treat themselves by GPs - probably because they are totally unaware that there are alternatives to injections and some people respond really well to these.

I had an interview for a job yesterday and one of the questions I was asked is what puts you in a bad mood - answered it, as intended in the context of work situations (being ignored ... ironic that is probably the same with docs and B12 :)) but actually the single thing that is most likely to put me in a bad mood is my B12 levels getting low - generally think at some point in the day 'why am I feeling irritated?' and then realise that the nasal spray is feeling a bit lonely.

[Frodo]

I think I asked a similar question somewhere else. With my previous GP I asked if I'd had a particular blood test (just asked, not challenging, not complaining) because she had told me I had had 'ALL the blood tests' and 'did not have cancer' (By the way I never thought I had cancer and she had not told me that was her suspicion). She had to admit I had not in fact had 'all' the blood tests (I didn't know at that stage about the B12 inaccuracy either, or the thyroid tests being controversial) but then she absolutely flipped, telling me I was 'making up things I had seen on the internet', and was suffering only from stress. I don't seem able to get past that - the first thing my new GP did was to offer counselling. It's really difficult that they have to rely on tests known to be an inaccurate reflection of conditions, signs and symptoms, or which have a high chance of inaccuracy. I also came across this in pregnancy with a false chromosome abnormality test, when I was told throughout my baby was likely to be born dead or severely disabled. My grandmother was told she just had an infection and was sent home from hospital when she had terminal cancer. My father saw a consultant who said he was fine, just slightly high blood pressure: next day a terminal stroke. Sorry, I've veered off topic somewhat. But yes, it seems impossible to get past a wrong decision or diagnosis or get another opinion.

[Chancery]

I challenged my neurologist by formal complaint, as in I made one, through the formal channels, in writing, and asked to be given a new neurologist. I got what I wanted, but the answer I received to my complaint would be funny if it wasn't so desperately wrong.

In essence, they gave my complaint to the neurologist in question, she denied all the things I'd said about her behaviour and they simply cut and pasted it into their 'reply' to me. It even had all her quirks of language and grammatical errors (she was Argentinian). I really couldn't see the point in giving a complaint about someone to the person themself and asking them to answer it. It's a bit like asking Charles Manson to judge whether what he did was wrong and decide whether he should go to prison. Guess what he's going to say?

At the time, I felt like pushing it further when they sent this farcical reply to me - no, it bloody wasn't 'satisfactory' - but the NHS is very much a 'pick your battles' organisation. You really can't fight every fight with them - you'd die of exhaustion. You really have to go into any consultation knowing what you want beforehand and then doing everything you can to get it. Only fight for what matters, and then REALLY fight for that. Otherwise let it go. The NHS is a many-headed hydra and you can't possibly fight it all.