Survey of women’s health in the North East and North Cumbria - a chance to share experience of thyroid health care

[Slowrunner1208]

Hi all, if you live in the North East or North Cumbria our local integrated care system (NENC) is conducting a survey on women’s health. One of the options on things important to you is ‘Thyroid’ There are also free text boxes that have been useful to complete - around experience of health care, I mentioned gas-lighting. The link to the survey is below ⬇️ f anyone is interested (hope the pasting of the link works)!

smartsurvey.co.uk/s/womensh...

[Hurtlocker]

Thank you slow runner...have filled in survey...your link does work.

[annnsandell]

Thank you, I'll have a look and spread the word locally.

[TaraJR]

Thank you for this. I'll share on my Facebook groups. This includes Newcastle, and I know there are some strong feelings about thyroid care there.

[arTistapple in reply to TaraJR]

Yes TaraJR you are so right. I never thought about how to keep an eye on this. Great you are so we don’t miss anything. It could potentially be very good considering the National Guidelines have enormous input by eminent endo here in the North East.

I really hope everyone on the Forum who is from the area covered puts in their pennies worth.

I hope a public display of our ire, particularly in this region, could have a good knock on effect to other areas of the country too. Such is the destructive and widespread influence of this particular eminence.

[arTistapple]

Yup already done it. A rather disappointing routine answer from the BBC though. However no doubt (hopefully) this must all be collated first.

[Slowrunner1208 in reply to arTistapple]

Hi TaraJR and arTistapple we’ll be too late for this year but wouldn’t it be great if we could get local Healthwatch to adopt thyroid healthcare as an annual priority to look into patient experience.

[TaraJR in reply to Slowrunner1208]

Each county's Healthwatch organisation was set up differently, so each one is run differently. Healthwatch Norfolk is absolutely fantastic and helped us win our Norfolk campaign to reinstate T3 on the formulary. But it's certainly worthwhile people contacting their local one, explaining the situation, and asking for their support. ALSO... contact Healthwatch England .. request they're look at this as a national scandal. I believe it is, as hundreds of thousands of patients (mostly women) are let down, or being harmed, by woeful diagnosis and treatment.

[arTistapple]

And to TaraJR . Feeling thoroughly ignorant about Healthwatch. Thank you both for highlighting this. I will check it out!

[arTistapple]

Wondering (in moments of feeling more able) whether everyone answering this from the area affected should be somehow forming a group, using  TaraJR guidance. There is some form of group already in existence in this area which I will be visiting come October. This was suggested to me by another Forumite. I need to check her tag to inform her and acknowledge her. I will add it when I find it.

Divine1990

[TaraJR in reply to arTistapple]

For my group ITT Improve Thyroid Treatment, I compiled a "Norfolk T3 Toolkit & Tracker" giving others an idea of how to fight in their area, as we did in Norfolk. It was only 2 of us women patients fighting! But we won, with the support of Healthwatch Norfolk in the background. Not sure how I can share the Toolkit on here though, as it's a Word document

[arTistapple in reply to TaraJR]

I will PM you with my email address if that’s OK.

[TaraJR in reply to arTistapple]

Yes of course 😀

[Slowrunner1208]

I’d be interested in a group in NE too

[TaraJR in reply to Slowrunner1208]

If you send me your email address by private message I can send you the 'Norfolk Toolkit'