March on Downing Street: I often think it would... - Thyroid UK

Thyroid UK

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March on Downing Street

Joyia profile image
32 Replies

I often think it would be extremely positive to march on Downing Street with Placards registering our disgust at NHS treatment for thyroid conditions. If only there were some of us who felt reasonably fit enough to do this. With enough people and media involvement surely our concerns would be noticed. It would take a little while to get people interested from all over the country but it is not impossible. I just wish I was younger to set the ball rolling. Noise we need to make much more Noise!

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Joyia profile image
Joyia
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32 Replies
Ansteynomad profile image
Ansteynomad

Endometriosis Awareness were marching down the Victoria Embankment in the general direction of Downing Street last Saturday afternoon.

When I saw them, I had the same thought as you.

shaws profile image
shawsAdministrator in reply to Ansteynomad

See my response below.

Treepie profile image
Treepie

After there is a new government -'if it looks like lasting ,maybe. The powers that be are complacent .All is well.

shaws profile image
shawsAdministrator in reply to Treepie

See my response below.

shaws profile image
shawsAdministrator in reply to Treepie

See my response below.

Lizzy1606 profile image
Lizzy1606

I had an idea that maybe we could write a letter or email with all the facts about thyroid treatment and what changes we would like and send it to Panarama at the BBC.As someone posted on here about a woman in the USA who is going to do a documentary maybe the BBC would be interested in doing one.They say they cannot read all their mail ,so if we heard nothing from our first letter then we could all copy it and send it out in force.

PS of course we would need someone who is good at writting letters to do this.Any thoughts on this idea .

shaws profile image
shawsAdministrator in reply to Lizzy1606

See my response below.

Beverleyb profile image
Beverleyb in reply to Lizzy1606

good idea!

shaws profile image
shawsAdministrator

Leave a comment on this page:-

healthunlocked.com/nhsengland

Afaghieh profile image
Afaghieh in reply to shaws

Hi All

The heading says NHS FOR ALL. It doesn't say depending on the post code.

We can write to BBC and ITV one of them should take an interest.

joyce59 profile image
joyce59 in reply to Afaghieh

too true seems as if its now good health care is a privilege rather than a right.

Joyia profile image
Joyia

Thanks shaws for the pointer and yes Lizzy getting Panorama involved would be hugely influencing. We definitely need much more intensive publicity for the parlous state of affairs so many are experiencing and as NHS current guidance appears to put the onus of treatment back onto our GPs it leaves an even dire situation. Years ago I would have relished campaigning but must leave it to younger people who may still have the strength to fight, I would most certainly manage to get to Downing Street though and hold up a placard! I wonder if any interest could be provoked on Facebook as they appear to attract more people than most, not just a thyroid page but a campaigning page. Once again due to age I would not know how to go about this nor have the energy, but somebody might.

The problem is the number of powerful and influential individuals who work either in or connected to the health service who are undoubtedly in receipt of brown envelopes. They will do anything to protect both their egos and their wallets.

Too many are frightened to challenge the status quo and too many don't bl**dy well care.

It won't get better, only worse particularly if the Eton mafia are voted in again.

Margo profile image
Margo in reply to

I completely agree with you cinnamon_girl, the pharmaceutical companies control the world, however I don't believe the Eton Mafia would make the situation worse, my thoughts are the other way. Whoever wins I agree with you the situation won't get better.

Polaris profile image
Polaris in reply to

"BMJ editor-in-chief Dr Fiona Godlee said pharmaceutical companies should not be able to block access to alternative drugs."

"Doctors' leaders also need to sort out the web of misinformation about drug prescribing that has been generated behind closed doors. and is costing the NHS hundreds of millions of pounds a year by scaring doctors from using cheap and effective medicines."

bbc.co.uk/news/health-3...

in reply to Polaris

Linky not working Polaris.

Joyia profile image
Joyia

We mustn't give up cinnamon, it is amazing once something gets enough publicity how that can have a knock on effect, I just wonder if we have been aiming high enough. Petitions are all very well but to even get a mention in Parliament there has to be 100,000 signatures and then it is not viable for a full debate. Perhaps we should chain ourselves to some railings are something dramatic to draw attention to the media!

in reply to Joyia

Joyia - it's not giving up but there has been plenty of publicity on thyroid disorders over the last few years in national newspapers including broadsheets.

As this is a predominantly female condition, it's far easier to label us as hypochondriacs and/or menopausal.

The very people who should be helping us are failing to do so - we have GPs with inadequate training, are incapable of thinking for themselves and would far rather treat us with contempt. And they receive a six figure salary.

Sorry, I'll stop now but will just say that I'm still fighting, am waiting to hear from the Health Ombudsman and that will not be the end of it.

helvella profile image
helvellaAdministratorThyroid UK in reply to

There has been publicity, but it looks to me as if (to take one very obvious example) diabetes mellitus is mentioned far, far more often. Further, whereas "everyone" appears to understand that treatment of diabetes requires regular testing, self-injection, with a real possibility of hypo- or hyper-glycaemia - thyroid is forever "take a little white pill every day".

As a male here, I quite often feel invisible to the medical establishment.

Joyia profile image
Joyia in reply to

I understand what you are saying cinnamon and agree there has been much publicity on the thyroid condition within articles written for various newspapers/magazines etc. over the years, this obviously hasn't been enough to gain attention and was thinking more of moving in a different direction via tv or people marching power.

Helvella you are most certainly not invisible to us, you are such a valuable human being to our thyroid world.

Spanglysplash profile image
Spanglysplash

This would be brilliant! Only I can't walk for more than 10 mins, I'd be curled up in a ball feeling awful. I wonder if this is why this hasn't been done yet, before getting ill I'd often go on protests and fund raising marches.

Spanglysplash profile image
Spanglysplash

I like the panorama idea a lot.

LuckyKat profile image
LuckyKat

Many years ago I worked in Whitehall and I know that politicians will seek advice from 'experts' with regard to any issue that needs specialist knowledge. That is why we are stuck; the medical establishment has a different view.

Did anyone notice a few months ago that the Labour party are pledging to insist all GPs follow NICE guidelines to the letter to save money? Not encouraging. We need some reforming zealots, but I'm not sure where to find them.

Perhaps we could all take out membership of the Monster Raving Lunatic Party - seems quite appropriate - and insist they campaign on thyroid issues :)

Joyia profile image
Joyia in reply to LuckyKat

Ahh that's the answer luckykat, create our own Party, there are enough of us to form a coalition!

Cal123 profile image
Cal123

The USA seem to be so far ahead of us. Groups like Stop the Thyroid Madness, the Butterfly Nation Project to name a couple. Surely there are some medics here who would raise their voices, Dr Peatfield maybe, and there must be others who've clashed with the GMC?

nightingale-56 profile image
nightingale-56 in reply to Cal123

Caring doctors need to gang together and fight for us. Most doctors would not as they are receiving quite a nice salary for keeping quite and fobbing us off.

Joyia profile image
Joyia

Trouble is the rare medics who support us place their livelihoods and reputations in jeopardy, look what happened to Dr. Skinner.

nightingale-56 profile image
nightingale-56 in reply to Joyia

I can understand their point of view, but a bit of honesty would no go amiss. How can having seen approx. 40 doctors (approx. 20 in one fell swoop at the Royal London Hospital), not have given me an answer to my skin problem soon after starting Mercury Pharma Levothyroxine. Trying the rest of the generics in UK have not resolved this problem.

Joyia profile image
Joyia

Jbee have a google for histamine intolerance, this is a subject I am looking at closely as I have many allergies, apparently it can be the cause of many health problems including skin issues but is not widely recognised by the general medical profession. I have been reading some very interesting information.

shaws profile image
shawsAdministrator

First of all, we are very, very fortunate to have Thyroiduk.org.uk started by Lyn Mynot who should be approached as none of us would be either gaining knowledge or have this forum whatsoever.

I am sure Lyn will have some good points of view as she's been at the forefront for a long time now.

If one person (originally 3 -two of whom are quite ill) took a case to the Scottish Parliament, should we be able to do so to the English Parliament?

If we aren't members of Thyroiduk.org.uk you can become one for the cost of £20 per year or £15 concession otherwise I am doubtful I, for one, would be well.

thyroiduk.org.uk/tuk/member...

Joyia profile image
Joyia

Well said shaws, so many of us are grateful for this forum and the invigilators.

Cal123 profile image
Cal123

Thyroid UK are very much appreciated, as is this forum, I'd be lost without both. In no way was I trying to undermine these when mentioning the american groups. :)

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