All Party Parliamentary Group - call to action

[Wired123]

Hi All,

We Thyroid disease sufferers seem to be woefully neglected by our government, especially those who need Liothyronin/T3. Even those who only need Levothyroxine/T4 are often under treated and testing by GPs is minimal - often going by TSH alone.

Getting a referral to an Endocrinologist is challenging and from this forum we see Endos seem to be reluctant to treat or have their hands tied due to cost.

All in all not a good state of play in the UK.

Seems to me we have lots of different campaigns going on, people are writing to MPs/Lords, Thyroid UK is doing their bit and some doctors publish decent papers/YouTube lectures.

However it’s all falling on deaf ears from what we can see on this forum.

I think we need to bring everything together in an All Party Parliamentary Group. This is a regular forum that takes place in the Palace of Westminster and will be attended by MPs, Lords, Patient Groups (like Thyroid UK), patients, doctors and representatives of the relevant pharma companies.

I have attended one session of the APPG for Diabetes once and I saw prominent campaigners like Tom Watson MP and Dr Aseem Malhotra really lend weight to the argument as well as hearing first hand patient experiences.

By having all interested parties in one place and on a regular basis, the voices can be heard loud and clear. Collectively the APPG can really then use the members’ resources/political connections to really get the ball rolling on change.

The first stage is then to form an APPG for Thyroid Disease.

If there’s any member on this forum that would like to take the lead in getting this setup then I would be happy to support and guide you in this as much as I can.

I would do it myself but I have a few pressing personal issues on top of my full time job that will not allow me enough time to push this through.

Perhaps there is a retired or non-working member on this forum that is looking for a project and can see this through to completion.

If you can all like this post then it will be seen by more and more people and perhaps picked up by someone who is willing to take on the project.

[Wired123]

Some further information on APPGs is available on the following website:

parliament.uk/about/mps-and...

[Wired123 in reply to Wired123]

All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities.

[waveylines]

Anything that raises the plight of the appalling treatment of patients with hypothyroidism.....both getting diagnosed and getting optimal treatment has to be a good idea. The situation in the uk worsens by the year. You wouldve got far better treatment over 50years ago then you do now. Shame on the medics and those that develop the protocols.

[Wired123 in reply to waveylines]

Totally agree, hence we need to set up the APPG! We are being short changed by the government due to lack of treatment and also exploited by the pharma companies who overcharge for what is a generic that should be costing pennies!

[diogenes Remembering]

I'm not trying to be a wet blanket on this suggestion which, if the world was a logical place, would have a very good chance of influencing the medical world. The problem in my eyes is this (excluding the easy get-outs of cost and so on): the medical world is largely oblivious to and dismissive of, outside opinion and pressure. Their response to any such action would be to say " there is insufficient evidence that----" (classical kicking the can down the road). What do they mean by "insufficient evidence" and who decides? They mean that no matter how many times their stance is criticised and shown to be wrong, if the right people in the positions of medical supremacy haven't done the work and taken its implications for themselves, then if they won't move, nobody else will. The medical world is a self-congratulatory, defensive clique of so-called top experts who because they are settled in their beliefs, impose them on everyone else. For an example Ionnadis has shown that probably less than 4% of trials and meta-analyses in medicine are properly designed. And yet the nonsense continues without anyone asking questions. Truly Planck's dictum of "opinion won't change until the opinion-formers are retired or dead" is the regrettable. nay lamentable, state of affairs.

[Wired123 in reply to diogenes]

Well then isn’t the solution to this the APPG where we have a range of stakeholders who will challenge the medical establishment with the inclusion of “rebel” doctors who question the status quo.

The thyroid treatment issue is not just a medical issue as there are plenty of doctors who will treat adequately. There is also the funding issue that needs political will which is where the MPs and Lords come in. Tom Watson for example is a passionate campaigner for diabetes and obesity which helps get publicity and traction. Same with doctors like Aseem Malhotra and the inimitable David Unwin.

I have a dream... that all UK citizens will have access to adequate testing and treatment for Thyroid Disease.

[diogenes Remembering in reply to Wired123]

So do I: but guidelines today are not advisory but obligatory. "Rebel" doctors are either silenced or brought before a board which if they persist, will strike them off.

[Wired123 in reply to diogenes]

Doing nothing is not an option, we need to create a movement. We cannot just sit back and accept mediocrity and inertia.

We must fight back, this is a democracy!

[shaws in reply to Wired123]

diogenes is correct in that 'good' doctors are pursued i.e. Dr Skinner or Dr Peatfield were the last of the 'properly educated doctors' for treating patients as they were taught as junior doctors or researchers.

Both doctors in particular faced the GMC much more than a few times and always found not to be doing anything that would harm patients and it caused Dr P to resign his licence rather than be banned so that he could advise patients privately.

The stress/strain of Dr Skinner appearing before the GMC most of his patients and staff believe it caused his early demise.

Since then, they have spent many months collating all of the research documents that Dr S and his staff collated. (He appeared so many times before the GMC and it certainly was not his patients who were complaining - WHO put forward the complaints???? ). I think we'd all like to know an answer to that question.

[Wired123 in reply to shaws]

Plenty of good doctors on the Thyroid UK list of private and NHS doctors prescribing T3. Plenty of these doctors are flying against the guidelines yet have happy patients.

We should seek inspiration and support from them.

[marigold22 in reply to Wired123]

Unable to add a Like for some reason

[Wired123]

Still waiting to see if anyone is prepared to volunteer for the project. We need a forum at government level to champion the case for better thyroid treatment in the UK.

Doing nothing and airing our frustrations on Health Unlocked is not going to change things.

We need to make this happen and create change over time. It won’t be overnight but we must fight.

[Wired123]

Please also see my other post where I am trying to gather some info to get the ball rolling:

healthunlocked.com/thyroidu...

Turns out the APPG can only be setup by people in parliament so we need to get some MPs and Lords on board (from both government and opposition).

[Wired123]

This is interesting, from 2005 however. Things are still dire!

edm.parliament.uk/early-day...

[lynmynott Partner Thyroid UK]

Thank you for bringing up this topic Dk123. Thyroid UK has tried to get an APPG going in the past but unfortunately, a lot of MPs were not interested.

I brought it up in my meetings with Lord Philip Hunt and he didn't think it was a good idea.

Running an APPG means a lot of work as the charity has to organise everything and also pay for various things too so it's not as easy as it seems, I'm afraid. Unfortunately, we don't have the capacity to do this at present but perhaps in the future we could try again but we would need to fundraise and to make sure that we had the time to work on this. It's not just organising meetings, it's finding the time to attend, organise the taking and writing of the minutes and any actions that come from those minutes.

At the moment, MPs are very busy with Covid and Boris so I doubt if they would be interested to add to their workload.

It is frustrating, I know.

[Wired123 in reply to lynmynott]

Thanks for coming back to me, it’s great that you’ve thought about it.

Let’s start the ball rolling at least, we have the other post where I’m trying to collate some info about who’s who? Perhaps we might strike gold and track down someone who can champion our cause.

[waveylines in reply to lynmynott]

Thanks Lyn. I know how hard you have and others do work to try to change the plight of sufferers. I do agree that whilst the pandemic rules with the nhs sinking like a stone we are unlikely to get support from MPs. They are also dealing with thousands of people in serious poverty who go hungry and cold and the horrendous housing situation & increase in people being made homeless.

No one will look at this presently. We do need consider timings if we hope to have any chance of sucess.

[Wired123 in reply to waveylines]

I have to respectfully disagree.

We need to get organised and campaigning, doing this repeatedly until we get somewhere.

Sitting back and doing nothing is a great disservice to those in need.

Yes there are competing priorities but there always will be something more important (cancer, heart disease, mental health, diabetes) that take priority over thyroid.

[Marz in reply to Wired123]

I read yesterday of two people who tried to phone their respective surgeries to make on-line appointments. They were confronted with a list of available services including tests that were to be paid for. No warning to patients it just happened. I don't think we need to be a rocket scientist to understand what is afoot and this I believe explains the apathy that abounds in not giving people the treatment they deserve. One caller was a GP and totally unaware of the new system. Not everywhere - yet !

[Wired123 in reply to Marz]

That’s strange, GP surgeries should not routinely be directing patients to private services

[Marz in reply to Wired123]

I will try and find the piece !

[Marz in reply to Wired123]

opendemocracy.net/en/ournhs...

Link relating to appointments ...

[waveylines in reply to Marz]

Oh dear Martz that is really not good. I think the heart went out of GP Services when they chopped the consultation time in half, created a 9-5 Monday to Friday working week, tied all diagnosis treatments to protocols on their screens and then allowed them to effectively shut their doors to face to face consultations with patients for nearly 2 years. They are at best a signpost service & very little else. Frankly the former part these days consists of paperwork referral because they don't see you. Its very very sad and worrying.

[Marz in reply to waveylines]

I agree with you. We so often read criticisms of GP's not seeing patients but I cannot help feeling they are being instructed from above. Preparing us for a medical world of artificial intelligence no doubt ! 😪

[Marz in reply to waveylines]

opendemocracy.net/en/ournhs...

Link above relating to appointments.

[waveylines in reply to Marz]

OMG....words fail me. Thats awful!

My GP Surgery switched off the ability to make online app bookings at the beginning of the pandemic......& they've never come back. U have to ring them at 9am - theyre not open before then.... & then sit in a very long queue as people scrabble for a few phone apps -clearly they have no idea that people have other commitments. For repeat prescription u have to ring between 10.30-11.30am & 2.30-3.30pm. Really difficult to do if at work.....I have to alarm my phone as its easy to forget & then whoops uve missed the time window! Even if u do ring in that time window they often don't answer the phone. And they refuse to group my meds to occur on one day but won't order them unless requested on the date they set. It feels like they're just trying to make it really hard for their patients!

[Marz in reply to waveylines]

Sounds awful ... 😖 Hope we can all help each other to stay well enough to cope with ever increasing hurdles .... 🌻

[waveylines in reply to Marz]

Thanx Martz. Hope we all can. I dont understand the mentality behind it all tbh. Xx

[birkie]

Hi wired123

I've just come across this post, and thank you for posting it, 👍 can I tell you my experience, I have been ill on and off since 2004 when I became really ill bedridden, gp diagnosed uti with no urine test.. 8/9weeks later and over a stone lighter my mum made the gp do a blood test the gp came to my home and told me I was diagnosed with hyperparathiyroidism, anyway that's a long story, I left that surgery because I was not getting anywhere the new surgery sent me to Newcastle where I got a diagnosis of ME/fibro/cfs.... Flash forward to 2015 admission to hospital passing blood from backpassage and vomiting blood, diagnosed with reactive colitis, forward to the end of 2016 when I developed server sweating with a slight tremor, felt more exhausted than normal, felt like I'd ran a marathon everyday, went to my gp, after me complaining for months he eventually did a blood test, it was normal, OK just became more ill in 2017 tremor up a notch sweating off the scale exhausted all the time my bowles were now running fast, I was constipated before, I also noticed my voice had changed sounded like I'd smoked 50 cigarettes a day never smoked.. He took blood again,.. Normal !! any way this went on till 2018 again I went bk to my gp did bloods,, normal, think that was either may or June 2018.. in the sep 2018 I collapsed at home my son took me to the doctors saw a diffrent gp she immediately said I know what's wrong with you" you have an overactive thyroid " yes I did indeed, I lost it in 2019 due to it being so toxic,(graves) I requested my medical records last Nov 2020 and looked at the blood work my gp did on my thyroid, first he only did TSH... which on some were in range... Whatever that means and on one it said short suppressed... And some were below range... I can't find one T3 or T4 done in connection with the TSH my gp did.. It beggers belife how my gp missed my symptoms alone, never mind the TSH blood test, if you have an auto immune thyroid illness you are obviously attacking your thyroid making it go over or under active also in hashimotos to.. Surely if a gp sees a TSH below range or short suppressed or suppressed that could indicate the thyroid is struggling to function but they don't seem to bother, my gp obviously didn't, but now my thyroid bloods are looking OK but my TSH is 0.05....and he is bothered... I have no thiyroid on T3 medication that is a good level for me.. You couldn't make it up... 🙄🙄🙄🙄🙄

[Wired123 in reply to birkie]

Sounds horrible, you’ve really been through the ringer. We need to get this kind of story in front of MPs so they can see the suffering and implement simple solutions which cost very little in relation to how much they improve patients’ lives.

We simply cannot in good conscience have so many people suffering when the solutions are there.

The government talks about levelling up, in my opinion this also applies to providing everyone with the medical care they deserve.

[birkie in reply to Wired123]

Hi wired123💗I'm so angry still how I was treated in trying to get diagnosed with hyperthyroidism (graves) my gp was useless he kept harping on about it being the menupause, I actually started going through the menupause at 45 after a hysterectomy so I already knew those symptoms they were very mild at best never bothered me, these new symptoms I developed however did, you certainly don't get tremors when your menupausal, yes you can sweat but my sweating was every day and night absolutely no let up, told my gp at least 12 months before I finally got my hyper diagnosis that it was my thyroid that was the problem not the menupause, it's actually in my records, "Karen thinks all these symptoms are due to her thyroid, they are not they are menupausal symptoms, 12 months later I was on the operating table having a thyroidectomy because my thyroid had gone thyrotoxic 😤 I would like to inform my local mp of how we are treated as thyroid sufferes, and how we fight to try to get better, and how some of us have to source our own medicines, why do we pay national insurance stamps if we have to source our own medication, also I read so many story's of how people pay to see specialist, and pay for blood tests,, and I don't blame them for doing that, I would if I could afford to.. But we shouldn't have to, that's why the nhs was set up in the first place, as you say this needs to get out, to say your only a bit over range so your OK is a joke, would they say your only a bit diabetic, 🙄🙄🙄🙄

[Wired123 in reply to birkie]

I hear you and your frustrations.

Let’s channel our energies and anger into positive action against the decision makers in government.

Let’s make this happen!

[linda96]

Is now the time?

We’re coming out of covid - could this now be how we tackle thyroid diagnosis and treatment issues? Thyroid APPG sounds really good?

[Wired123]

we tried to get this off the ground but had to stop as things got in the way. I do think an APPG is required.