When there have been petitions done about better use / availability of multiple thyroid medications, what is the biggest number of signature that this kind of petition has attracted in the past?
And have petitions been a useful tool for a) raising awareness and b) effecting change?
You can search for open, closed & rejected petitions on this link.
petition.parliament.uk/peti...
Requires 10000 signature for government to debate.Eg
“More support for thyroid conditions including opening t3 and NDT for wider use” did not meet petition standards & was rejected - UK Government or Parliament is not directly responsible for it.
There was also petitions for medEx for hyperthyroid. Support was nowhere near target.
Thanks Purple Nails.
Do you know why it was rejected?
Separate but related question: can anyone here who has successfully built up a local thyroid network please write a short guide to how they succeeded in doing this, to show the rest of us how to replicate it?
Are there thyroid patient chapters for each U.K. county? Are there (if not) local thyroid patient groups for some of them? I live in London and am not aware of any thriving local groups and would like to find out about any so that I can eg. Share petitions and find out local variances / progress with / from them.
The reason for rejection is noted - very brief eg. Unclear whats it about / nothing to do with parliament / similar petition running.
@taraJr may have advice re local groups.
I do know there was a debate re lio and guidance not being followed & you could submit a vote regarding was a if the response was acceptable. I just can’t remember the details.
PurpleNails HowNowWhatNow I help to run Thyroid Support Group Norfolk (a Facebook private group) We've had a few meet ups but since before Covid started.
I also help to run ITT Improve Thyroid Treatment (on Facebook too) We have encouraged people to join up into local groups like we did in Norfolk. There are a few, including one in Devon.
I think Thyroid UK has a list of local groups? I'm not certain but it may be worth contacting their office.
In Norfolk, we campaigned against our CCG under our group name. We got T3 reinstated by being well informed, very professional (even when we were angry and upset) and persistent. It can be done!
There are only 3 results on the government petitions page that a search for “thyroid” brings up.
No results for “hypothyroid”.
None for “T3”.
Two results - of the above 3 - for “hyperthyroid”.
The Med Ex petition has the biggest number of signatures, of these 3, and that was 1,320 signatures.
Are there other recent thyroid petitions about access to T3 that come up with a different search word in the engine?
Is there something else I’m missing?
I got 11 for All petitions - (thyroid) & 2 for T3
All petitions (43,426)
There are separate sections for (all subjects)
Open petitions (1,213)
Closed petitions (8,678)
Rejected petitions (33,535)
Awaiting government response (6)
Government responses (742)
Awaiting a debate in Parliament (12)
Debated in Parliament (142)
Not debated in Parliament (17)
I saw those other ones too (three of which are about adding fluoride to tap water (or not) but - as far as I can make out - these others were all rejected and so didn’t get past the first hurdle.
The three I mentioned are the only ones that weren’t.
There are around 700,000 autistic adults and children in the U.K. and 114 petitions that include the world “autism”.
The most successful of these petitions with autism in the title attracted over 20,000 signatures.
Can anyone summarise why the vast majority of petitions on the government website relating to the thyroid were rejected?
Why are they so readily saying that they aren’t responsible for access to thyroid treatments?
I am asking this and other questions to be clearer on what a successful thyroid petition looks like. There must be public affairs and government relations employees in thyroid charities who can help us to draft one that has a good chance of not being rejected.
And thanks PurpleNails for answering the question about reasons for rejecting. Is that a decision that would have been made by people involved solely in petitions, or would the Department for Health have been involved, too?
I never hear, here, about what the Department for Health thinks of the thyroid patient movement in the U.K..
Are they at all reactive, is thyroid of any interest to health ministers and therefore to the Ministry, or is the NHS in such disarray that it’s a case of all man the decks and be very careful you don’t go overboard?
I think that ultimate responsibility for the health of UK citizens used to rest with the Secreatary of State for Health. But the government divested itself of that responsibility way back in 2012 or thereabouts as a result of the Health & Social Care Act 2012.
It removed responsibility for the health of citizens from the Secretary of State for Health, which the post had carried since the inception of the NHS in 1948.]
Source : en.wikipedia.org/wiki/Healt...
Whether this has anything to do with the problem of thyroid petitions going nowhere I really don't know.
Who is responsible for the health of citizens now?
And why does divestment for the responsibility for health mean they can’t also supervise health and take an interest in funds being well-spent?
Who is responsible for the health of citizens now?
I don't know. I assumed the NHS was responsible for itself and answered to itself.
Thank you I have just spent the afternoon reading up about the new NHS bodies, ICBs and ICPs and individual ICPs. A questionnaire was rolled out for opinions but ended 28th November (today). I have witnessed stuff like this more than I care to remember. It’s going to take a minimum of a year to sort out just the basics. I can only assume that the local CCGs are going to hold on to their role of refusing (sorry should say monitoring) T3 and other treatment for quite a while yet. For anyone who is interested in my area, Newcastle and Gateshead which will soon encompass Cumbria, Northumberland, South Tyneside and Durham. 3 million souls and the worst health figures in the UK. This means a likelihood of at least 60 to 120,000 hypothyroid patients. If as they say, up to 20% of thyroid patients are dissatisfied with treatment that means up to 24,000 people could be disabled by hypothyroidism. Women are 6 times more likely to have the condition than men. Whilst this condition does affect both men and women I would say as it’s associated mainly with women, it’s why it is overlooked. However this state of affairs means that up to 24,000 families are blighted by the condition in this area alone. This sounds like a lot of people affected and a lot of discrimination. The economics of this are actually overwhelming. There will be a huge amount of money spent on health, and welfare and a lack of economic investment in peoples own lives, their communities etc etc. Hospitals will be dealing with serious avoidable health issues. (Costs?) All because a few powerful individuals don’t allow patients who have paid into the tax system of this country, access to “the deluxe organic stem ginger cookies”. Quote from Twitter from The British Thyroid Association - a doctor led organisation. I think this is a very significant minority of people, many of whose lives are at best on hold. Its my understanding it’s a condition not a disease as such. It’s not a condition brought about by undermining one’s own health as far as we know but we know the prejudices held against people with hypothyroidism are many. As we have seen from Twitter/The British Thyroid Association and others. “You are obviously not ill” A quote from a consultant I received in A&E.
✊ this is awesome... just saying.. x
agreed ... arTistapple , that is a brilliant piece.
Its interesting to put your mind to something when you are pinned to the couch. It’s rough figures only because it looked like from the ‘map’ that 4% of the population here is hypothyroid. So the figures may be under rather than over. Thanks for reading it and the feedback!
agree. Can we please get this into an august journal.
I would have to very much check it for accuracy. The point I was attempting to make was how many lives our famous endo here, potentially has, to make so many people’s lives a misery. It’s a truly misunderstood condition (especially by medics) and sooo much power invested in someone who makes no move to acknowledge or take part in up to date research. This endo has the power to keep a tight hold on who gets T3 or anything in this area, but unfortunately he is in such a position of influence that England, Scotland, Wales and Northern Ireland are also likely ‘influenced’. In a free country this just should not be the case, when so many people are needlessly suffering.
LOL! Giving the NHS responsibility for people's health is a sure fire recipe for disaster! (Apols for laughing. If I didn't laugh I'd be crying...)
thank you - v useful to know
Why are they so readily saying that they aren’t responsible for access to thyroid treatments?
This is something that comes up again and again. Because the decisions about ‘clinical’ need lies totally in the hands of medics (whether or not they are fit for the job). Remember COVID? A big deal was made of the differences between the scientific advice and the political decisions informed by said scientific advice. The level of power allowed to medics is actually open to corruption, if those handling are unfit to do so. This is in many ways why they are not open to public investigation. It’s why so many complaints turn into personal legal situations and ‘ambulance chasers’ abound, I think. Patients complaining about medics don’t have much support otherwise. Our position with thyroid conditions is particularly awkward and it would seem simple. All that has to happen is one doctor high enough in the pecking order says “No” and that’s it! I am always referring to the benign dictatorship of medicine. Again fine if the patients needs really are being taken into account but it only needs a ‘rogue’ dictator for the whole ‘benign’ part to become something else. This is why also, that when a genuine complaint which is far reaching, like the Twitter/Facebook issue in the last few days should be followed through as far as possible. That falls into a more public domain.
So very well said. Though I'm not sure I'd include the word 'benign'! The power that doctors have is not only unnecessary but also too often injurious to patients.
Thank you Levojunkie. I guess I was using it kind of tongue in cheek. There is no such thing as a benign dictatorship! Your observations are very much noted and I totally agree. I will remember in future to be much clearer (if I can). It’s so difficult writing everything down. The forum allows us to treat everyone as our friends and I made an assumption here that I definitely should not for this explanation! Thank you!
From what you - PurpleNails - are telling me, government website petitions have not been at all helpful for thyroid patients so far. Going by the publicly available info on the petitions site.
77 mentions of liothyronine in questions in Parliament
theyworkforyou.com/search/?...
Did you notice that under each question you can vote with your take on whether the answer responds sufficiently to the question. I didn’t see one response that does this. And so the vote count is pretty shaming - if Boris Johnson hadn’t ensured that the Tory Party employs only the shameless and overpromoted.
Lord Borwick seems a good person to know. On our side. And has Grave’s disease. Hadn’t heard of him before.
What about pursuing the mental health argument for under treatment of Thyroid issues,especially the so callee Subclinical Hypothyroidisn ? Mental Health seems to be a bit f a media thing and for those if us under the cosh , it makes life barely worth living . Suicides are up and mentioned in newspapers most days , low thyroxine ( even a bit low ,is associated with mood disorders .Might save govt some money is properly treated . As we know Budget implications is the one and only reason for NHS turning their backs on us .So if doctors were paid £1000 for every patient they successfully treated for Hypothyroidism /Hashimoto I bet the treatment figures would escalate
the BTA provides some kind of fellowship for early profession medics.
Are there any patient friendly experts who do the same thing?
What I’d like to know more about is what that business school academic from Aberdeen researched, which is the loss to the economy of not *properly* treating patients or of not diagnosing them.
Yes ..converting failure to treat to £££ after all that is why they treated Covid .
In all my years of research/reporting on various highways and byways of the NHS, I can honestly say that I've never encountered a case history which involves the GP/consultant showing any interest in the patient's swift recovery so they can go back to work and earning....it began to seem like the opposite intent to me.
What do you thinknthey get out of bed for? I just don't know is it the pay?
Well, I notice that GPs are wanting to work even fewer hours , which is obviously a hidden pay rise for most. I think, like most people, they started off all bright-eyed and bushy-tailed wanting to really help people. Then, bit by bit, they get battered and crushed by the system. In the UK, they have few options for employment so I can imagine they could feel trapped. Then it becomes all about power and status for many of them?
The hours GPs used to do worked when they were the main breadwinner and their wife’s working hours (am being sexist because this is just how it was) were smaller. Now it’s often women who are GPs - as it should be - and they, as everyone, prize an element of flexibility. 6 shifts is now a normal week - which works out at 3 long days.
In the late 90s along came Tony Blair. Who, on this occasion, gave us a really bad deal. GPs no longer needed to work evening shifts as part of the job.
I don’t know what the solution is.
heard a GP being interviewed on radio a few days ago .. said that 6 shifts ie. 3 days , then involves another "2 and a bit days" of paperwork for them ( dealing with the workload generated from those 6 shifts) .. no idea of the truth of this statement .. or whether it applies to most GP's, as i don't know any GP's personally to ask ...but we can't assume that '3 days' means they are having the rest of the week 'off'.
Interesting comment tattybogle, re the paperwork generated. I used to be a teacher...working day 8.45am (min) to 3.30/4.00pm min.....but that working day did not include the hours for preparation, nor marking.....all of that was done in "own time", and unpaid. Long holidays and secure work were seen as being "pay back"...despite the long holidays often including preparation and marking 
as well as recovering. Teaching was seen as a vocation....and often ran alongside raising ones own children and running your home.
I was told by a friend who is a GP that 8 shifts means 8 shifts of 4 hours (4 days) and he gets the paper work done on those days.
I have another friend who is a GP, and now a partner in her GP practice. When she signed up to work there she worked 5 days a week, and all the partners she worked for there worked 4 or fewer days. Now she is a partner, she only works 3 and does another job on the other days.
She said to me - at the start of her career - that one of the problems with part time work is keeping up with all the new learning and medical understanding, as it comes out. When you reduce the number of days - she said at the time - you lose your edge.
All of which is hearsay. Am sure different GPs might say differently!
thanks .. always interesting to glimpse the inside view , even if it's second hand
Thanks for the reportage. I just hadn't thought about P/T GPs and their continuing professional education. I guess I would have assumed they'd catch up with reading and day courses on their days off. But it seems that some don't take days off because they have another P/T job. I wonder, could this go some way to explaining why they're not always as knowledgeable as we'd like them to be?
You're absolutely right! Not sexist at all, that's how life used to work. (And, frankly, now that I have many decades of life to look back on and evaluate, I think life worked better in many, many people-friendly ways - childcare is a full time activity and either parent can do it...)
Yes. I remember what bliar did - wasn't his big thing 'Modern Medical Careers' or something like that? No evenings so they had to see more patients during the day... It's all gone off the rails now. I have a number of thoughts about solutions but I can't see it happening.
The other day I watched that superficial, grandiose SKY programme, The Great Debate. It was about nurses wanting payrises and the lack of medical/nursing staff etc. Felt like throwing a brick at the screen when the NHS top banana manager came on and gave his solution: ramping up the NHS's digital connections across the country. Completely out of touch with actual people and all our various needs. Plus, of course, the NHS has an absolutely dire , eye-wateringly expensive, wasteful track record with anything to do with digital connectivity. Perhaps things would be much better if these top bananas treated staff like human beings and not robot tools to slot in to their digital fantasy..?
I have often been asked by doctors what job I do.
It seems - after being asked it so many times - that the question is asked for them to divine what my social status is. The higher the patient’s status.. the more thorough their treatment?
Yes, that's a good question. From all I've seen, I would say their first priority is self-protection, which may well result in more thorough treatment (though I've seen the reverse too). My former GPs were clueless about what I did. Simply because, in their bubble, they had no idea that there are people like me doing what I did! (Sorry to be vague - it's a public forum! Happy to go PM). The GPs I vaguely have now always acted like they would rather I wasn't there. So did I to be honest!
In the late 1990's when I worked as an aromatherapist in a medium secure acute mental health clinic, there was a young man patient confined in there, with nurses and doctors present on the wards. I saw him... and his eyes were bulging....so alarm bells rang for me, if not the medics, and I asked if his thyroid had been checked? It hadn't. It was subsequently checked, ..... he was diagnosed as hyperthyroid, and discharged into his GP's care. How many other patients ...sorry, "clients" (shaking my head here) are in a mental health clinic, or having mental health treatment, when what they actually need is thyroid treatment?
Probably most people have physiological and/ or environmental causes for their 'mental health problems'. (See eg. British Psychological Society's 'Understanding Depression' report, downloadable from their website. They're trying to break it gently to the NHS that they've got it wrong. That's for starters. So much more research out there.) In 10-20 years time we'll all accept that we were sold a pig in a poke about 'mental health' and 'it's all in your mind - here have some pills'.) Nowadays, I wonder why anyone would trust the NHS with their mental health.
When we did our training we were taught to "see the whole person", listen to what had brought them to us, and anything else they felt they needed to say. We also took note of any medications they were already taking, and looked them all up to check for contraindications.....sometimes (well, fairly often) one prescribed medicine would cause the symptoms caused by another medicine.
I don’t know about not trusting the NHS with mental health, I don’t trust them with thyroid health.
I would think it's pretty much of a muchness! Last time I checked, trainee docs got 16 weeks on a psychiatry rotation (which is 3 weeks less learning than Freud got.) Psychiatry is not like psychology which is more in line with what people actually need. How many weeks training do docs get on thryroid? Is it perhaps a week or two in a 16 week endocrine system rotation?!
who knows but whatever they get, it’s not enough.
You did him an extremely good turn - well done.
Thank you Geogeor.... the worrying thing is that the medics themselves hadn't picked it up.
That’s because they don’t recognise the signs and symptoms of thyroid dysfunction. That’s the biggest scandal of all. GPs simply don’t get enough training in this field.
Agreed, from what I know/experience.....yet it very much also includes those higher in their fields than GP's. The prof endocrinology I saw back in 2013 very clearly seemed unaware...even very nearly completely unaware...of thyroid symptoms.
Once again, more than likely a diabetes specialist. The whole of the medical profession appears to think a tiny little pill is all that’s required for hypothyroidism and once your TSH is in range, all other symptoms have got to be something else.
Spot on Gingernut44...diabetes specialist....I looked him up yesterday. Sadly, so was the next one I saw privately......only discovered this today. No wonder neither of them seemed to know what they were doing, and most certainly didn't help me.
What a great favour you did that young man... 🏆
I don't think NHS HCPs do any routine T testing do they? Like, once a year? I've never had any before my health collapsed. And even then it was months until they got round to it. Wouldn't it make sense to routine test people for a range of common conditions - catch them early, prevention etc?
I don't like any of the names we're called by public services! Wonder if anything would change for the better if they called us 'Taxpayer'?!
Thank you Levojunkie. I do hope he managed to live a more productive life than being medically "coshed" or detained for his own safety. Worrying how many may be just that?
How I agree with you 1tuppence...! I hope the T meds helped to sort things out for him. You did a really good thing there.
The misuse and abuse of psychotropics (anti depressants, anti psychotics, anxiolytics etc) is really disturbing . Slowly we're coming out of that awful period of what I'd call 'neo-mediaeval psychiatry' - in vivo experimenting on hapless taxpayers and/or kwikfix coshing them to keep 'the problem' quiet. I think there are many, many millions across the western world who've been affected (I remember one of my son's teachers used to run a survivors' group for women coming off these drugs - it was affiliated to a national UK network I believe.)
Funding for Thyroid Research - Petition Map
Who would like better Thyroid treatments available or at least a choice?
Government e-petition about thyroid treatment
Petition to demand better care by endocrinologists
Thyroid Petition at the Scottish Parliament update
