New investigations body

[Geniler]

There is a new organisation call Healthcare Safety Investigations Branch that looks into system wide healthcare issues. I wonder if everyone on this site were to contact them we could get an investigation into how poorly the U.K. healthcare system (NHS) treats people (mainly women) with thyroid disfunction? And get recommendations to upskill GPs and Endos as well as getting more options for medication. Access to NDT for some of us would make such a huge difference. I’ve spent thousands of ££ to get myself well.

[shaws Administrator]

I think you have a point there. Not everyone who has hypo is diagnosed when they should be - neither is a blood test taken to exclude hypo/hyper. It used to be done through our clinical symptoms but nowadays few doctors know symptoms at all.

We should also be allowed to trial options instead of being given the cheapest plus extras to control remaining symptoms.

[Geniler in reply to shaws]

If there is enough support from people on this forum we can submit a referral for an investigation. It would be great to submit some of the hundreds of stories I have read on this forum that clearly demonstrates we are being failed miserably by the NHS and may be costing the system millions of ££’s in misdiagnosis, unnecessary drugs and surgeries and the lost of employment and quality of life for patients. The NHS constitution should guarantee us better care than we are currently receiving. If interested in pursuing let me know in this forum.

[shaws Administrator in reply to Geniler]

We are under the 'umbrella' of Thyroiduk.org.uk who are at the forefront trying to change attitudes and at present all their efforts are about T3 which was withdrawn from many a few months ago. They also met with Lord Hunt in the House of Lords. I shall give you a link. If you are not a member of TUK you can also become a member.

They do an immense amount of work for only three people in the office and I suspect their families join in when there are 'things going on'.

healthunlocked.com/search/l...

I have just looked at your link at they are funded by the NHS so will the Endocrinoloigsts wish to listen to us? Not so sure.

First of all they withdrew NDT's (natural dessicated thyroid hormones - in use in various forms from 1892 and very successful as no blood tests then only the doctors brilliant expertise in knowing clinical symptoms. Then just recently we've also had T3 withdraw - disaster for many.

[Baobabs]

I think this is a great idea. Not sure where the idea goes from here. I don't live in UK or partake of the NHS but some proactivity on this issue is a wonderful idea.

[humanbean]

hsib.org.uk/

I have never heard of them before, but the link above is to their website.

[Angel_of_the_North]

I suspect they'd be more likely to tell you that T3 is dangerous and so are most vitamins. Government funded bodies are there to back up policy while looking as though something is being done for the good of the voters.

[Geniler in reply to Angel_of_the_North]

But an investigation that looks beyond the U.K. and involves patients stories as part of the evidence may be able to start a national conversation about how poorly we are treated by the NHS and how little GP’s and endo’s know about how to treat us.

[SlowDragon Administrator]

Will link lynmynott and LouiseRoberts in to this post

They may know about it already.

If not, it's yet another lobbying aspect to consider

[nightingale-56]

This sounds a really good organisation. Do you know if they are anything to do with Government. If they are, I wonder if they would have any more 'tooth' than the Health Ombudsman's Office. Like you Geniler , I have spent a lot in an endeavour to get better health than at present.

[Geniler in reply to nightingale-56]

There is a draft Bill to make HSIB a truly independent organisation. A report was released today and can be read on the parliament U.K. website under the draft Bill section.

[nightingale-56 in reply to Geniler]

Thank you for letting me know. I will have a look later.