I would like to see this site, so active in helping patients struggle with their failing health, to take the fight further to the NHS.
Recently, a proposed merger/closure of Lewisham hospital clinics were stopped by legal action.
A QC took the issue on as a single price case- and won.Minister J. Hunt had to back down pretty swiftly.
If all those on Thyroid UK that can afford the price of a months supplements- say a £10 single subscription to a fighting fund and Admin could administer this, I would be the first to put in.
PayPal is an easy way to collect anonymously.
I really think the time has come to follow up on the Scots Petition, and we don't have an English setup similar to give us an equal hearing.
Even the req'd UK parliament 100,000 signature petition could be easily ignored-.so action is needed.
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tegz
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Hi tegz, as this site is actually run by the charity Thyroid UK, I believe we would need their participation / input / agreement, before anything like this could get off the ground here. Especially bearing in mind the following posting guideline: 19. Any Post, Question or Comment which appears to be asking for money, except for fundraising for Thyroid UK, will be edited and/or deleted at the discretion of the Admin team.
I would suggest therefore, that you put your ideas and proposals directly to Thyroid UK via this contact form on their website:
Will do that- but hope that discussion can carry on here about the concept- as that is what is is at the moment. After all the RCP is a Charity -and they have a lot of clout notwithstanding!
I believe discussion is fine, as long as no actual 'fundraising' is involved in such discussion, and everyone is mindful of the fact that this support group would not even exist if it were not for Thyroid UK
I would ask for Thyroid UK to take it on from my proposal and support it. If there are reasons to deny it ,and there may be many I would accept that ,and look elsewhere.
A single shot approach would focus efforts and be simple to execute once set up.
The lawyers would have to earn our money, after all.
meanwhile let me add i am in full support and if this site does not do it i shall try myself to fight, i am scottish but lived here south england over 30 years and look on in admiration what the ladies in scotland have done we must do it here too
Count me in please, whatever is agreed. We need persuasive orators to put our case, with strong scientific evidence, plus doctors on our side who will refute the inevitable evidence from the NHS that Levothyroxine works for everyone,
You know what makes me really mad? These bloomin' well-paid GPs who ignore patients. These are the very people who should be fighting for us!
The only way I got anybody to listen to me was to write letters of complaints concerning 4 GPs at 2 different surgeries. As a taxpayer it makes me ANGRY.
Would really appreciate a link to the Lewisham case anyway to hear what was done.
I belong to 38 degrees and thyroid support sites -so will chase that option as Lyn Mynott has not been able to add Thyroid UK support due to lack of resources for this size of project.
I hope you get a good idea from these cuttings how easy it can be to get powers used wrongly to be challenged successfully.
Hi Tegz.....so good to be back ....PC down for a whole week ...needed a new router Whatever did we do without them!
I am wholly behind you,what ever it takes.
I do though realise the position that Thyroid UK are in and I thoroughly appreciate all that they do for us.I also applaud all that the Scottish ladies are doing to further our cause.
Reading regularly on this site of the suffering of people with thyroid problems who are desperate for help and support but are not being properly treated, I am continually asking myself What can we do ? Where can we go? Is it to the National Press? ..The Government? How can we get genuinely listened to in this country?
Why do we have to get 100,000 signatures to get listened to? To do that we have to ask people to support us who don't actually know where their thyroid is or what it does!
6,710 of us chipped in to fund the court case. People power 1 – 0 Jeremy Hunt.
Note the numbers- we have more again so we will have to find another lever to pull on this tack of facing the problem on level terms- ie: in a courtroom, not a surgery & when ill.
The fact that Elaine Smith, MSP, is a sufferer and obviously involved in the Scottish petition may mean it could be taken seriously in the UK. It doesn't look as though a 'conclusion' will be reached any time soon in Edinburgh unfortunately.
Any high-profile thyroid sufferers that could be approached for publicity?
Hi tegz I also belong to 38 degrees and sign there petitions to help save hospitals and other good causes. But it is about time someone were signing a petition to help us get what we need. And we need strong leaders like you to start it. Sorry I am a follower. Go on Tegz, what have we got to lose.
I like your idea but unless there is scientific evidence (of the type that endocrinologists favour eg. randomised controlled trials published in peer-reviewed journals) then I can't see how any legal action can stand a chance.
It's the same problem that I think the Scottish petition will face - they will dismiss patient accounts of poor treatment as anecdata (the plural of anecdotes) and proclaim that the science supports the RCP's guidelines.
I know that people with ME/CFS have tried to go down the legal route (the NICE guidelines for ME are appalling saying that psychosocial therapies eg. CBT are the only ones that should be offered by the NHS) and they lost their cases as it's all argued on the scientific evidence.
In my mind were two tracks - one on the Diagnosis includung levls used for being ill but still in range being masked by the average 90 percentile curve being good enough in isolation.
If a patient has adrenal deficiencies,Hormornal problems, previous head injury etc then the ball park figure just isn't good enough. The RCP cover themselves in retrospect by having the GP take account of the symptoms additional to tests- but we know this doesn't get done in many cases.
GPs are dazzled by the allure of headlight figures and assure you they do care about your health, but hands are tied,Blah Blah...
This is what I refer to as a 3 card trick -where ill people just can't get past the multiple blocks on treatment.
Secondly, on the treatment regimes- I think that earlier decades of successful treatment using NDT [admittedly not useful in every case] has been rubbished to make life easier for the medics, rule writers and insurers. Modern drugs are well known for their power profile with Drs. who rarely admit the multiple and often under-reported side effects. Use with other meds is so varied many issues get missed.Studies are needed to see just how good Levo is in practice.
My experience is that GPs and Endos deny that even side effects listed on patient leaflets occur.
That historical good record over decades of doctor mediated care at the personal level just doesn't match todays management style- which could actually deliver, if clinical excellence was applied adequately.
That's where I think the thrust of any legal claim would be- ie:
Why do most EU and USA have a limit of 3 for TSH and we are always lagging behind in changes to this keeping paople ill?
The partitioning of T4 and T3 treatments between GPs and Endos makes what the body needs into a black art. Scare stories abound -and we know where they come from.
Is there a disproportionate focus on Diabetes treatment?- £1Bn is used for this alone in NHS and 90% of the resources of Endo Clinics.
I do feel the thyroid case for fair treatment has been sidelined for decades and the establishment is fighting a rearguard action to keep the lid on by denying any move forward for patients affected by their policies.
One idea that I did have though was to campaign for organisations that make decisions about the public's health to be held accountable under the Freedom of Information Act. As it stands, the RCP can act in secrecy. If they were forced to hand over their documentation, it would be a good thing for us.
There is a campaign for organisations that do public sector work to be under the FOI Act. See for example this recent interview on The Daily Politics...
Good point, Juliet. I'm sure the above situation I opine is partly due to the protective cover of internal networking decisions over eons. I doubt if even the medics involved know where the truth of the thyroid mess lies as it's buried in history and the silence of sufferers..
Any legal course would have to take a measured view of the law, that's one given, but information is power and things just have to change away from the cosy denial current in the thyroid treatment world..
I , or anyone else, could no doubt make a legal point or two with enough private funds poured in- but the law would be quickly changed to circumvent any short term technical point won, as may well happen over Lewisham Hospital case, eventually.
A group with many members like T-Uk and more importantly working knowledge and history of the problems people face would be a stronger base, as well as having less individual exposure to financial loss.
If the RCP can hide behind charity status- then so can others!
Further- getting exposure on a major site will attract legal beavers who want to earn their spurs on a landmark case. That can still happen here- and other outfits may well get involved then on the management and fund raising side if and when the ball starts to roll.
I don't think Thyroid UK can get involved as they are a charity.
I saw recent post here about the trials earlier done on evaluating the use of T3 and finding it no help in thyroid cases over T4 and showing that it was a fraudulent approach[ selective data] - usual stuff, really.
That may be a lever to use for a legal challenge, even though some time back. It's still holds good for the medics!
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