However UrsaP recommended I write my own post on this massive subject.
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Edited : Apologies UrsaP for hijacking your post. Perhaps I should write a separate post ?
I will make my announcement here and now. I got my medical records last June (paid £50); they are all horrendous reading right back to when I was diagnosed hypothyroid in 1981. I remember vividly GPs telling me - all blood tests are fine; or your TSH is too low, we will reduce your T3 med. Now I see that my TSH was 11, 17, 22 etc. I had to sell my house in 2006 to live off the equity as GPs said Nothing wrong with me, therefore I couldn't receive any type of benefit. I very soon became destitute, now many years down the line, could very easily become homeless, battling with vile landlords who continually increase rents as I use my energy & any spare money to improve their property so it's comfortable to live in - short term.
I am in ranting battling mode now - having discovered I have Hashimoto's via a private blood test in January 2017. I have discovered something called Pro Bono, where QCs or barristers give their time and efforts free of charge - If they consider a case to be worthy; if they fancy a good honest battle, to improve their CV etc. I have in the past consulted with ordinary law firms which a case would have had to be on a No win, No fee basis. They were not willing to risk it. I myself have studied 2 years of law before I collapsed in a heap & got carted off to a psychiatric unit with Myxodema Madness. So I know what a case involves; I did ironically work temping for a law firm in Birmingham which primarily fought cases brought against the NHS. They worked in chaos.
If one tries to put their case out there to be considered for Pro Bono, it has to be sent to a "pool" for the lawyers to pick & choose the cases they fancy. I contacted a law firm in London having googled Pro Bono Lawyers, but after a few days I was told I would have to send my case to the "pool".
I've had a mega traumatic few months as I got a revenge eviction after 8 years of living in that property; had to move quickly, the new propety is filthy, gas boiler 18 years old & got condemned, no requisite gas certificate (landlord could be fined up to £10k), only heating is a broken down gas fire - have to light it with a match & the fire blows up in my face, immersion heater was turned right down to zero & I couldn't alter it (took an electrician). So I went over a week with no hot water and no heating. To say I am now exhausted with adrenal fatigue, furious, cold, in debt, (what is there worth living for except my beautiful 8 year old grandson); BUT I made up my mind a few months ago to try for a Pro Bono Lawyer.
Any assistance in this mega lonely place gratefully accepted. I will probably need reams of actual facts about how the thyroid works ?? .....I have learnt a massive amount from this amazing forum but don't know as much as some here. I can't even think straight right now about what will actually be needed. But to get a Pro Bono paper accepted in the first place, I will have to catch their eye with something incredibly punchy & shocking. On my laptop I have saved & rubbished about six draft papers, all of which are much too in-depth and no doubt the reader will lose interest with the vast number of medical facts. It needs to be something like "Want a fight with the NHS?" IF I happened to win a case, it would set a precedent for others to follow. There are probably thousands of people (mainly women) who have been left to rot by the NHS.
Please do not tell me not to bother. I have absolutely nothing to lose, except perhaps my sanity. I feel certain that on my deathbed I will say "why did I not at least have a go?" I am desperate for a warm, dry home with no vicious, arrogant, selfish, money grabbing landlord, to have my dignity back, to feel safe and secure in the knowledge that no vile person can evict me at the drop of a hat. I have been failed continuously by the NHS for 36 years (1981 until 2017) and lost my whole life in the process.
Reply from UrsaP ---No worry's about hijacking but see what advice you get, if not getting much might be worth copying it to a separate post. Just so it gets seen. good luck. My husband constantly says legal the only way to go!
My reply to Ursa P..... Thank you UrsaP . I've been in court a few times previously.... 2 ex husbands and one longterm relationship, regarding finances; I "won" all of them, except of course you never get what you deserve financially. Also my son's father fought me for custody of my son (disgusting ex); I got full custody of my son. I feel in my bones that if a decent civilised judge hears the evidence, it will swing in my/our favour. But - massive amount of work (and tears no doubt)
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marigold22
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This is about me... about my personal case. I have pieces of paper showing categorically that I was horrendously under medicated for decades. A TSH of 22 and being told nothing wrong with me. That is not about the BMA, the BTA etc. That is gross negligence. It is very easy to mix up a personal case file with the politics of T3, TSH levels etc etc, as stated by the Bodies. But I have black & white evidence that I was grossly under medicated. Is that not medical negligence? Is that not going against the hippocratic oath? I am PRO T3, and find the current situation regarding the non prescribing of T3 inhumane and against all human rights.
To my mind, it most certainly is. I'm so sorry to hear of all your troubles, you really have had a nightmare of a time. I only wish I knew more about the law.
Thank you greygoose . I worked within law for around 8 years, and managed to study for two years before having to quit due to adrenal exhaustion. I know a lot about how it works, have 'met' a few judges. What has become fairly clear to me is that if there is an inequitable situation, the legal system does recognise that inequity. However anything to do with thyroid is extremely complicated.
However, if one of the measures is that much over-range, surely that shows negligence. After all, what are ranges for? Not to be ignored to that extent, surely. Or am I being naive?
Your thoughts make me wonder if there is more than one lawsuit involved here. Does working for the NHS absolve doctors from responsibility for negligence in the UK? I hope not.😊
We are a very 'sue-happy' country so lawyers advertise big-time and solicit business ( ads on TV, newspapers, billboards etc.) and encourage people to 'not take the law in their own hands but settle in court.' Lawyers very often take cases and don't charge up front but take a (large) percentage if they win a settlement for you. Not very flattering but lawyers are sometime called 'ambulance chasers' as they really solicit accident cases and wrongful death (!) cases big-time. Doctors are very afraid of being sued and so practice 'defensive medicine' which doesn't always work for the patient's benefit. Often unnecessary tests and procedures are done (read expensive-but don't worry, insurance pays) to help healthcaregivers 'cover their #$ %.' Sort of a leave no stone unturned approach. And the consent forms we have to sign are an artform in themselves. Before a recent TEE/TOE I was on the table and the cardiologist came in and went through the litany of what could happen including death. Actually he was very kind and good but it's the way to insure the patient is giving an informed consent.
In spite of these practices there are many good caring docs but they have to work within a very money-making system. I've gotten excellent care but the way to do this is to be informed and be a good patient advocate for yourself and don't be afraid to say no to procedures that don't seem necessary. And find doctors you feel you can trust. Well, enough about the US legal system.😯
The table in the image in link (1) came from link (3). Look at Table 3 on the fourth page of link (3).
The information in the graph and the table tells us that people with no obvious thyroid disease have a TSH around 1.25.
If medical treatment is supposed to return people to good health, then surely their TSH should be within a reasonable distance of the TSH of healthy people. And note that the graph doesn't go above a TSH of 6!
Be aware that the NHS has very deep pockets - they effectively have the entire treasury to call on if the government ever feels that winning is absolutely 100% essential. If you were to win your case the NHS will probably appeal. If you were to win an appeal then they could well appeal again. This is how they keep people and patients under control. They never willingly admit wrongdoing, and they keep on appealing until the complainant runs out of money or stamina or both. Another possible outcome is that the NHS might try and settle out of court by suggesting that they give you £50 or something equally insulting.
Although this isn't the same situation as you are in - it's about whistleblowers - this link might be enlightening :
The link was first published in November 2011, so is quite old now, but I still think it is a worthwhile read for anyone interested in how the NHS conducts itself in court.
I do know all of this. This is the only reason I would go along the route of Pro Bono. I do know it would still be exhausting but I now have nothing to lose. To be honest, I feel suicidal with all my problems that have mounted up over the last 36 years. Something very drastic has to happen. What are the quotes ? ... Until and unless one person takes the leap ....
I agree that the odds are stacked. I'm having problems with my senior living and I know I will probably get knocked around from here to Washington DC. But I'm 74 and I'm going to stand up for my rights. Even if I lose I can feel like I stood up to the establishment before I finally move on to a better universe. That's worth a lot to me. Sorry for the tear but the incident in question happened yesterday with our male CEO who is also in his 70's and still has peculiar ideas about a woman's place in the world. What a $#@&! I'm still so angry I could spit. Thanks for listening to this diatribe.😡😠 irina
marigold22 - I wish you all the best. I also tried 'No win, no fee' solicitors, but they wouldn't touch my case because I had nobody in authority to back me up. The GMC had defended the ignorant, arrogant GP who didn't diagnose me, treating me only with psychotropic drugs. Because my brain was so badly affected by the thyroid disease he did no blood tests, just kept saying my physical symptoms were 'all psychological', causing me to completely lose 6 years of my life. I also lost an enormous amount of money due to being taken advantage of by relatives. It was only recently that I got my life back together again.
I didn't know about Pro Bono when I wanted to sue in 2013 - I hope it works for you and you get your life back too.
Hi Trixie. I'm so sorry you had to go through all you did at the hands of disinterested, uncaring healthcaregivers. I'm happy to hear you are finally on the other side of the mountain. Take care. xx 🐱 irina
Your tsh levels left untreated surely are medical negligence.
Are you getting the correct treatment now on the nhs??
I would definitely make this a case of personal negligence rather than about the t3 politics as you said. It is more likely they won’t fight it as much if they think there is less of a political agenda and more of a case of individual negligence.
What outcome do you want for this? Financial settlement? Better treatment for yourself? Or for them to admit they were wrong. Each of those may require a different approach but I wish you luck!! Hopefully someone will help with the pro bono case.
The main and most urgent outcome I need is financial recompense. If anything improves for T3 users from any legal case it would be a bonus but it's money I desperately need. I used to own a house with a £25k mortgage but couldn't work any longer & in 2006 sold it to live off the equity. Now have homelessness knocking at my door.
I’m so sorry to hear that. Have you contacted thyroid uk directly to ask for any medical/scientific assistance to back you up. Also your local CItizen advice bureau and MP?
I contacted a 'no fee, unless win' lawyer firm who specialised in medical fault etc. about sueing NHS/ surgeon/Trust when a routine gall stone removal from bile duct procedure gave me acute pancreatic, sepsis, septic shock resulting in a life-long need for insulin injections. Most of the medical notes which I had seen on my hospital bed while transferred to Intensive Care went missing, and the lawyers said it would be difficult to prove negligence etc, so they wouldn't take the case. Some time lately the local newspaper reported on a coroner's inquest about a women the month before, at the same hospital, who had had the same procedure but died from her sepsis etc. The hospital was supposed to have learnt their lesson and patients were to be put on a course of antibiotics before such procedures to limit complications. I wasn't , so the lesson had not been learnt!
It seems that medical notes which could lead to the NHS being sued are constantly going missing. I was re-reading a post by Mamapea1 yesterday where her notes had gone missing. I too have notes missing - around the time I lost a premature baby.
Thanks, mamapea1's story is horrible. I had a GP many years ago who wrote in huge letters on the front of my file in a nasty manner 'father is a doctor' after still feeling ill a year after a twin pregnancy, and my father thought I should have some blood tests to see why. He never did more than some basics and never found out what was wrong ( with hindsight perhaps thyroid related or /and vitamins). Changed doctors of course.
Would being in the press get me a home with the deeds in my own name? Where would any money come from? A celebrity? A billionaire? Sorry to be so cynical...... I'm worn out
Hi marigold ~ my iPad is back in the world of wifi!👍. I wouldn't dismiss the idea of publicity too quickly ~ if handled correctly, it could open many doors. Also, there are many of us caught up in this thyroid fiasco and we could all come out of our closets in solidarity. Well, I would for one! As Mandela once said ~ "it's impossible until it's done" ~ or something like that (I have v bad brain fog today)💭.
There are many on here who have lost years of their life/babies/homes etc, and are still being discredited by medics who continue to view them as malingerers or time wasters ~ how long can it continue? It's a hard nut to crack, I know, especially as many of us have barely the strength to walk out of the front door, but it must be worth a shot?🎯
When Jeremy Corbyn brought up the T3 question in PMs question time recently (sent in by a member of TUK), he raised it as 'why was Hilary paying for her thyroid meds' ~ more a question as to the unfairness of having to pay for drugs previously available on NHS ~ it could just as easily have been sunscreen or gluten free biscuits 😳 there was sadly no understanding of the potentially life saving/changing effects of the drug, or the cloak and dagger behaviour of Big Pharma and the NHS.
Not that I blame JC for not knowing, I had no idea of the extent of it myself until recently, and it happened to me!!
This is the point ~ people don't really know unless it has happened to them, even then, they may spend years of their life thinking they're a hypochondriac, or crazy and depressed ~ their Drs confirming these conclusions in their medical notes, which get passed around ad infinitum until the untruths are firmly ingrained on that persons record.
In years gone by, we would have been in the workhouse or asylum ~ today we get to stay in our own sub standard homes (if we're lucky) and are forced to live on poverty levels of income via the now ruthless benefit system, ~ treated like the undeserving poor, and having to jump through various hoops to prove our 'imaginary' illnesses.
This is surely unacceptable in a first world country in the modern day. Of course, some of us are fortunate that this condition came to us late in life, giving us the advantage of savings, pensions or partners, or we have family to help us, but even in these circumstances,we still have to suffer the loss of independence, good health and our careers ~ to say nothing of the stress involved with having to deal with disbelieving, uneducated GPs, and their inane scribblings!
If people don't understand the scale of the problem, or indeed that there even IS a problem, how will we ever get support? The Windrush scandal has been going on for years (I'm making no comparison here to levels of suffering) and I knew of someone it had happened to, but, even though they knew others had the same, terrible issues with citizenship, they were ignored and unheard, until the mainstream media decided to take up the story. Now, it's quite rightly, a national scandal and the powers that be are bending over backwards to help!
I think the key is choosing the media outlet VERY carefully, and with deep consideration on how to handle it ~ preferably with advice from someone who understands the pitfalls of mainstream journalism. It seems that little bits and pieces of the thyroid debacle have come to light over the years, but have never made the 'big time'.
The poor women with the vaginal mesh suffered unheard for many years, and now we have women left unscreened for breast cancer ~ there's always something going on ~ why not us? Why don't thousands of us write to Victoria Derbyshire ~ has that been tried? Not really my thing, but legal routes seem hopeless without media backing in this country ~ true justice is sadly lacking here!
Anyway, marigold, I wish you the best of luck with it all, and now I'm up and running again (read hobbling lol!), I'll PM you later. 💕xx PS. Sorry for long, soapbox rant.🙏 x
Mamapea1 This is why ITT set up, to try to get us all actually standing together to do something. We all know and hear so many horrendous stories everyday about what is happening. We talk on here, and yes, it is a great place for information, help and support, and to be able to vent our frustrations. And many have found help for their own situation. Please do not think I am in any way knocking that. It is vital to us all. However, it is not changing things.
ITT formed in the hope of bringing us all together, to act. To come together to do something about it. It may be too late for may of us to experience any great change in our lifetime, but we have to act for future generations.
We all know how difficult it can be to get the right medication, and even the we have it, keeping it stable is another battle. We cannot all be well enough all the time to do anything, and many are unable to find the health to fight at all. So those of us who can have to do what we can, when we can.
I know that there are people behind TUK who have been working for many years to try to be heard. Sadly it seems that as far as the NHS is concerned understanding of thyroid conditions and needs is in remission! It seems to many of us that no one is hearing us.
I know I spent the most part of 30 years, being made to feel that I was the only one complaining that T4 didn't work - so there must have been something else to blame, i.e, my lifestyle/mental health, etc - the same so many of us!
ITT TUK, TAUK and other thyroid groups are working very hard to be heard.
ITT formed to try to get us all working together to be heard. One voice is easily lost, and it is too easy to dismiss us on an individual basic but if we can truly come together and show the extent of the issues, just how many people this does involve, than how can they ignore us?
IMO, governments are too powerful. I grew up having absolute faith in our Constitution(US) but now for the first time in our history our ICIC (illustrious commander-in-chief) is finding new and creative ways to poke holes in it and our legal system. Very scary. Can a dictatorship be far behind?
You never know. In the states we have something called "Go Fund Me." Google it and I believe the concept is worthwhile. Someone starts a gofundme page for someone in need. Anyone can start the page.Any need from work, funeral/hospital bills/ money to live on when so much has been lost. The donations don't seem to come from one rich person but many people like ourselves who have had hard times, had help and want to pay it forward. I believe the best way to get started is to find a sympathetic, well known journalist who will put the story out. I also think even if you are in another country CNN would be a good place to start. I like Anderson Cooper myself. But there are others who can generate interest if hardship stories. Your medical problems are universal and I think help would not be confined to one country. There are a lot of empathetic people out there and I wouldn't worry about 'accepting charity'. You may be in a position someday to be of real help to others because of your experience. One of my (MANY) sayings has to do with "Why would people help me?" My belief is " The Universe) always stands still for the photographer it has chosen ."(anonymous). Just some thoughts. Take care xx irina
Thanks Hidden for your idea about Go Fund Me. I did take a look about a year ago and it all seemed to be linked to FBook; which I have now unsubscribed from. A person asking for funds had to link in to their friends & family on FB first. Well I don't have any friends & family on FB!!
I'm sorry it isn't a viable choice. I don't use FB either and wasn't aware of the details. Take care. xx irina It seems so many forms of help sooner or later have a gimmick attached.
Being in the press will likely result in the NHS contacting you instead of you chasing them around. If their worried enough you would be surprised what they will do to shut you up! 😜
Thanks rosserk , I hadn't thought of it that way round. I have in the past spoken (in some manner, can't remember in which form - email/phone?) to Billy Kenber of The Times. He's an excellent investigative journalist who has in the past highlighted the T3 fiasco. I am going to contact him. Many thanks to everyone again.
I would also advised writing to your CCG and advising them what you’re about to do. I would email and CC your local MP. Also blind copy yourself all correspondence for your records. No court in the land will come down in favour of a litigant who didn’t contact the respondents and give them a chance to resolve the issue first. Also if you are left with no option other than to go through the courts you are looking at 3-5 years before your case is heard so it’s in your best interest to seek a resolution first. Good luck with the media 😜
I moved county in early March this year due to a 'revenge eviction' after 8 years of living in that property. I haven't yet managed to change GP surgery. So in theory, two CCG's involved, although my CCG for the last 8 years has been probably the best out of all of them presumably as I myself knew thyroid facts from this amazing forum. Also two MP's. I never went to my MP in my old area as we had a 'spat' over dogs off leads in parks after my 2 year old grandson had been pinned up against railings by a dog off its lead.
My NHS T3 prescription from endo in Birmingham could actually be stopped if they realise what I'm doing. One feels very vulnerable and insignificant with Big Brother taking command.
I am presuming that NHS England would be the correct place to write to informing them of my intention to go to the press with my personal story. And copies to GMC & BMA.
When Liothyronine was too expensive for the NHS to pay for & the fiasco that followed, I wrote to so many Bodies and individuals but never received a civilised reply. Admittedly my correspondence then was not about my personal story but I distinctly got the feeling that no body or assocation intended to budge. I even wrote to Jeremy Hunt & Sarah Wollaston in her capacity as Chair of the Health Select Committee..... no replies that made any sense from either of those two.
Yes! A certain section of the 'media' 🌞 put them there for all those years, and then another section brought them back, albeit too late!!! The corruption uncovered was disgusting ~ nothing changes in this country, despite the political pretence! x
I’ve just googled medical negligence solicitors and hypothyroid and quite a lot of information has come up. These would be good firms to approach. Local solicitors you need to pass on - big city lawyers are your best bet as they have plenty of keen trainee solicitors who would, if they took on your case, be doing all of the leg work.
What I would do @marigold22 is give them a call and determine what information they would need from you.Keep it succinct - condense down to one page of A4. A lot of solicitors will provide a free 30 minute consultation with you.
Citizens Advice can be good if you are in London eg if the top law firms are quiet they will send their associates down to Citizens Advice to provide pro bono work and advise you on how to move forward.
Gather all of your information together and ensure it is well organised. Facts and figures is all a lawyer is concerned with.
The medical profession are renowned for sticking together . Lawyers know this.
I wish you well and admire you for doing this, You deserve some justice. I noticed someone suggested setting up a go fund me page, that is a good idea . I also had to sell my house. I wish I could help you, but I am also pretty broke. Also what about going on something like This Morning? I know there have been people on there telling their story. Diane Holmes was on it. I also think contacting the local press is a good idea , if you are on the local news, or newspaper somebody somewhere will help you.
Lots of good suggestions. I believe Publicity is the best. There are a lot of generous people but they rely on national/international news sources to let them know who needs help. When you research charitable organizations, it is amazing how much is skimmed off the top by the 'volunteers' who collect the money.So please don't be afraid of putting yourself out there. I also think a lot of people are like me; we would rather help a specific individual who we know will receive our help without large amounts of our donations being taken by well paid corporate CEO's with relatively little of the financial pie actually making its way to those who need the help. Good luck. irina1975
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