NICE - patients should be more 'pushy'

[Fruitandnutcase]

Heard that on the radio as I woke up this morning. I could hardly believe it so I Googled and found this article - sure enough - seems we should be more pushy.

To quite from the article

"He said the rationing body was carrying out work to examine why so many patients are not being prescribed medications, even though they have been endorsed by NICE – meaning local NHS organisations should not refuse to fund them.

But he said individual patients should become more knowledgeable about their health conditions, and tell their doctors if they believed they were missing out on treatment which could help them.

The former GP said: “The fundamental point is it’s your body - and the more you understand about the drugs you are taking, or what you might be able to have, the better you are able to work with your doctor.”

telegraph.co.uk/health/nhs/...

[HarryE]

Yes I just saw it in the paper. I will be taking a copy to my next appt!!

[nobodysdriving]

thank you!

only 2 days ago I was 'politely arguing' with my GP that I was never diagnosed nor treated properly for my pernicious anaemia with neurological symptoms, arguing I need B12 injections weekly and not 3 monthly (but they would not even give them 2 monthly!) and she 'almost' kicked me out of the surgery saying that the 'doctor patient relationship had broken down'.

I said to her: 'it's all ok when a patient takes what he/she's given, goes home and shuts up, but the minute we get educated, question our treatment or ask for answers or demand better treatment then the 'relationship' has broken down!! I see...this is a ONE WAY RELATIONSHIP'.

she said 'oh no, it's not like that'

I said 'YES ITS EXACTLY LIKE THAT'

[Fruitandnutcase in reply to nobodysdriving]

Good for you. The article goes against so much of what you read in here. Maybe we all ought to copy and laminate it then carry it with us for back up.

[nobodysdriving in reply to Fruitandnutcase]

well, I will keep a copy of this article as if I get one more letter telling me the 'doctor patient relationship has broken down' and wanting to 'boot me' (as the hospital team did) I will complain to GMC and quote the article. GMC guidelines on 'good medical practice' state they cannot 'get rid of you' only because the patient disagrees on your opinion/treatment or complains about it.

[Hidden in reply to nobodysdriving]

Good luck with complaining to the GMC. See my new thread above!

[roslin in reply to nobodysdriving]

i went to ny dr yesterday with B12 symptoms and she said she has only treated one pt with B12 deficiency because she kept falling down. I am comming to realise that they know bugger all about it and it is frightning. I am being sent to a neurologist now, probably another 3 mts wait. My GP does listen though and is not thretened by my knowledge which is something I guess.

Roslin

[nobodysdriving in reply to roslin]

well, at least you've been referred to a neurologist...I have been diagnosed in 2011 with pernicious anaemia, never referred to a neurologist or haematologist, 2 years of me arguing and 'fighting' to get better treatment and I am STILL waiting to be referred to a haematologist! don't 'give up the fight' x

[Hidden]

Nobodysdriving

Link please!!! I recently saw an eye doc. I'm one of the few patients whose eyes get affected by Hypo (my hypothyroidism is also undiagnosed despite my high antibodies etc) I was treated privately but this is getting ridiculous.

This eye consultant refused to print out my recent test results whilst I was politely asking him to offer me a copy. He started to get argumentative giving me excuses for not doing so and he got himself agitated and he had a classic bad bedside manner. I calmly told him I am a patient and I am not here to receive his anger. Incidentally, I mentioned GMC for the degree of his aggression.

I'm currently considering to take it further. (I have other reasons why)

Have a nice weekend.

[helvella in reply to Hidden]

If you had said that few hypothyroid people have eye issues recognised as being relate to thyroid, I'd completely agree. But I actually believe that a large proportion of hypos have their eyes affected to some extent. Certainly me. And the nearest person I know with thyroid disease. And numerous posters here. Whether it is lessened ability to cope with oncoming headlamps, reduced focussing ability, tiredness, dryness, discomfort, floaters, reduced colour vision, or many other aspects.

If you are referring to Thyroid Eye Disease (by any of its names) then, yes, it does seem to be less common in hypos than hypers. But quite clearly, it can occur in people at any point on the spectrum of thyroid hormone levels including "euthyroidism" with no known thyroid issues.

Not being willing to give you your results seems a fundamental issue. Why not? And even if he has a reason in his view, it needs to be one of the very few approved reasons to allow refusal.

Rod

[Hidden in reply to helvella]

Hi

Many thanks for your helpful reply. I remember Dr S knew about hypo and vision issues. Whenever I looked online by "thyroid and eye issues", it is only Grave's that pops up, nothing about hypo and vision issues. Then I also have high thyroid auto antibodies which seem to go b****ers attacking tissues of all sorts.

Yes. I decided to contact GMC. The eye consultant who makes loads of cash..he was simply uninterested in his job and his patients. He probably had some anger issues too which I have no time for. I'm not his shrink...x

[helvella in reply to Hidden]

Very glad if it does help you or anyone.

You just might find some of the older posts here of interest. Maybe use the search function? And these links:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

I know there have been quite a few others but I have notes of these!

[nobodysdriving in reply to Hidden]

gmc-uk.org/guidance/good_me...

gmc-uk.org/guidance/ethical...

[Hidden in reply to nobodysdriving]

Hi

Sorry for the bother.

I just finished complaining to GMC. I rarely do this unless I am forced to this afternoon myself (not about an endo). Bad doctors.

You had some issues with hospital consultant as well? That doesn't surprise me. Is that a local hospital or a tertiary service if you don't mind me asking this. Please feel free to PM me at any time.

[nobodysdriving in reply to Hidden]

it was a major tertiary hospital Omega. I complained about a surgeon lying in his letter to my GP, never got anywhere! they ALWAYS do what they please, the only time a complaint is half taken seriously is when someone dies (mind I am saying 'half' here, even then I wonder how much it is taken seriously )

[Hidden]

Has Armour been approved by NICE?

[helvella in reply to Hidden]

It and the other desiccated thyroid products are not licensed in the UK.

It would be unusual for NICE to endorse an unlicensed product though it can happen.

[Hidden]

I can answer my own question it hasnt been approved.

[helvella]

These are the CCGs that consist, to a significant degree, of GPs and other doctors?

Yes - GPs are in a difficult place.

[Hidden]

Yes .....bought this paper this morning as heard it on the news.....guessed it would surface here.I shall be cutting this article out for sure.....most definitely something to be armed with and to refer to.

[Clutter]

Prof. Haslam is sh*t stirring. All he will accomplish is a fallout between patients and their GPs.

It's the CCGs that need reforming. They control the budgets and fob patients off with 3rd rate generics instead of drugs which effectively treat illnesses and are well tolerated by users.

[Hidden in reply to Clutter]

I agree that the CCGs need reforming, however there are also GPs who fail to understand that patients should be partners in their treatment.

Too often I hear of GPs making assumptions, such as 'your weight gain has nothing to do with your thyroid issues'. This has very little to do with CCGs and a lot to do with the attitude some GPs have towards their patients.

My experience did not cause a fall-out, in fact it improved the GP-patient relationship.

[Clutter in reply to Hidden]

My point is that non-partner and salaried GPs are being hamstrung by dictats from CCGs instructing that TSH testing solus and T4 monotherapy are the protocols for hypothyroid diagnosis and treatment.

I agree with you completely about the assumptions some GPs make and their poor attitude. I've experienced poor attitude from one GP at my practice and my sister from her's. She was informed over the telephone, by a GP she had never seen, that her cholesterol was high and she needed to eat less and exercise more, ie she's fat and lazy. My sister has gained 8lb in two years since becoming surgically hypothyroid post Graves and is very happy with her weight. Aside from being a sexist pig, the arrogant fool was unable to distinguish between good & bad cholesterol.

[Hidden in reply to Clutter]

yes - it's a valid point. The hardworking and conscientious GPs are stuck between a rock and a hard place and an overhaul is long due... lets hope for a brighter, more honest and intelligent approach for us all.

[Jackie]

Hi I tried this when very ill in the hospital, in the summer. All a consultants fault. I asked for a last resort drug, recommended by NIce and the European commission. He told me it did not exist. Changed cardios and living for a bit longer.

Moral, it does not always work ,so be prepared for a battle, but worth it!

Best wishes,

Jackie

[Hidden]

Great find!

I wrote into my surgery a year ago with some 'concerns' over how my hypothyroid issues had been handled and was told that these issues would be raised at the next centre meeting. I have had need to visit my GP on several occasions since then and can honestly say that the patient-doctor relationship has never been better. I am listened to and asked questions where my responses are respected.

The issues I've had are not as complex as many I read about on here in that I don't have vitamin deficiencies or conversion problems... however, it seems to me that being assertive ('more pushy') has enabled me to be heard.

However it also takes the medical centre and GPs to be prepared to listen and understand the concept of patients being partners. This is perhaps where many medical experts fail.

[Fruitandnutcase in reply to Hidden]

Hopefully that is what this will lead to. I remember my wonderful, overworked GP saying to me many years ago when my son was a baby that even though things looked alright to him, I was his mother and knew my baby and if I felt he was showing symptoms of yet another ear infection then that was good enough for him with which he prescribed the much needed antibiotics. He was one lovely doctor.

[hairyfairy]

The trouble with doctors nowadays is that they can throw you off their list if you give them trouble.

[Hidden]

Wondering whether it's worth e-mailing him to let him know about thyroid sufferers. I've personally been 'pushy' with GPs and it's got me nowhere.

I find them to be disinterested, lazy, lacking in knowledge and a waste of tax-payers money!

[Hidden]

See my post elsewhere about nhs gps being the root of all evil. Pushy does not help. Gps have too much power. How could any reliable figures be known about how many of us have gps who ignore specialist recommendations and simply refuse to prescribe meds we are entitled to ?? There is no one to report to

[fiona]

Yes that's what I'm sure we've all had to do, to try and get adequate thyroid medication that works. I'd call it assertive not pushy though. Pushy is when you are at the end of your tether and you know you won't set foot in that clinic again.