🪧 How can I help campaign for change? 🪧

I think all of us here know the injustice of poor healthcare and knowledge but I'm wondering what I can practically do to help change things?

Is anyone able to point me in the right direction please?

[Alanna012]

I think there are some groups that actively campaign for change in a more direct manner. I think some are on Facebook.

[Hidden in reply to Alanna012]

Ah, I'm not on social media! I'll see if I can get my husband to have a look and report back to me. 😂

[helvella Administrator in reply to Hidden]

Don't feel forced to join facebook - I haven't and won't join it.

Although it can be a pain, you can do things without. But I'm not trying to persuade you either way. It is, absolutely, your choice.

[Hidden in reply to helvella]

I deleted all my social media over a year ago. I can't say I've missed it but it is frustrating not to have it at times like this.

[Alanna012 in reply to Hidden]

I agree with that sentiment. I'm on it purely because I had to be for a school saving campaign and I hate it. Why on earth do I have to have 'suggestions' of people I've never met before? I'm not impressed with the hegemony of these companies, that said they can be utilised for driving campaigns. They can do good in that sense.

[Lora7again]

You could write to your local MP and complain about your care I did and you can see the response I got if you scroll down my threads on my profile page. I wish I could say it helped me but it didn't.

Here is the link

healthunlocked.com/thyroidu...

[Lotika in reply to Lora7again]

I also did this, my MP sent my letter to the dept of health and social care, who are likely a bit busy at the moment, so we await a response. When it comes, I expect it will be a copy and paste of the response Lora7again received! In all seriousness, before they messed with my dosage, I really wanted to start come kind of pressure group and had some ideas of how I might go about it, even... But I am currently busy in being in a dosage-change fug, this time because I couldn’t get them to listen to me. On this occasion, I can give them a bit of leeway for COVID, but it doesn’t forgive the last 3-5 years of not being listened to, don’t get me started! The not being listened to part is probably a separate issue; my main gripe is the NICE guidelines for hypothyroid, which as I see it, whilst recognising that some people do not do well on T4 only, offers no other outcome for those patients other than systemic gaslighting, as nowhere does it suggest testing T3 levels.

I think there are more problems than that, but it is the one I’d seek to change first as I think it is specific and achievable and would make a big difference.

[Hidden in reply to Lora7again]

As poor as I think my care has been, compared to most on here my care has been exemplary! I will see what I can do to become bothersome to my MP.

[helvella Administrator]

There are thousands of ways of helping to encourage change.

I have written many emails to all sorts of organisations and individuals expressing opinions, pointing out mistakes, making suggestions.

Sometimes they get ignored. Sometimes not. And, I am quite sure, often acknowledged then ignored.

Contacted the people who manage information in the NHS and pointed out that Armour is not a T4-only medicine. It contains T4 and T3. Next release of statistics, that had been corrected. Difference? Next to nothing in importance but it corrected an inaccuracy.

Raised questions over advice on liothyronine - to disperse tablet in liquid and throw away what isn't used. Still in progress but I don't wish to push the MHRA when they have rather a lot else on their hands at present.

Raised prescription quantities with local people. Argued that, given MHRA report, we should get it prescribed in three-month quantities. Although they did not fully agree, they had no argument against - and that is what I got.

Signed a number of petitions.

These are just simple examples and only meant to point out that there are opportunities for many of us to make differences - even if very small. But I do hope others put forward lots of ideas and all who read can pick one or more they feel comfortable doing.

[Hidden in reply to helvella]

Thank you, helvella.

I thought there would be lots of things I can do, I just had no clue where to start!