Sharing this Norfolk info on fighting your ICB. Hope it inspires people to form local groups.

[TaraJR]

Some members may have heard of Thyroid Support Group Norfolk (TSGN). We're a Facebook group, formed in summer 2017 to support patients in Norfolk or near just across the boundaries.

In 2017 we took on the 5 Norfolk & Waveney CCGs, fighting for T3 to be reinstated on the Norfolk formulary. It was 3 years of hard work, but we won! We got 7 articles into the regional newspaper which may also have helped! edp24.co.uk/search/?search=...

I even found myself doing a local radio interview - aagh!

We had tremendous support from Healthwatch Norfolk HWN - the CEO and deputy CEO are fantastic. I did a short video piece for their AGM in 2019 to say how supportive they were. Very scary, but I had to 'take a hit for the team'!!

youtu.be/0cZO5eOjWMg(Not working as expected?)

This week HWN's AGM mentioned us again as part of their 10 year anniversary! At 19 minutes.

youtu.be/Q922gYrqGEo(Not working as expected?)

What I'm saying is - this can be done!! It was only my Norwich friend and I - she says "If two little old ladies like us can do it, so can anyone else". All the national guidance is out there now saying T3 can be prescribed if T4 does not work. Parliamentary statements back this up, The price of T3 has come down over 80%. None of this was there when we started, and we still won!!

There's power in campaigning as a local group, even if it's a small one.

[ Edited by admin to allow the YouTube links to work. ]

[amala57]

Well done Tara & Tracy, we are so grateful. Thank you.

[TaraJR in reply to amala57]

Thanks. But you actually started the ball rolling in Norfolk! Brilliant idea, and we made it in the end!

[Star13]

Well Done! I did it too but its so draining!

[TaraJR in reply to Star13]

Whereabouts are you?

[Star13 in reply to TaraJR]

SW London

[Star13 in reply to TaraJR]

I did it by getting my MP involved to help secure an IFR. The consultant said he would treat me providing I had one because his particular hospital didn’t prescribe so it was up to me to get funding first. I then had to get my GP to agree to prescribe as the IFR had to go to his prescribing budget. Took about 3 years in all to get all the red tape sorted. I was constantly having to jump through hoops to prove I needed the medication which was difficult given I’ve had a TSH of 0.01 for about 30 years. Finally the Consultant has written to GP saying that it’s not helpful to dose me on TSH results!

[Alanna012]

Can't get the video link to work!

[TaraJR in reply to Alanna012]

helvella has kindly edited the links to make them work

[Alanna012 in reply to TaraJR]

Thanks! Great work you did! Brave. Healthwatch Norfolk seem very proactive.

[TaraJR in reply to Alanna012]

Healthwatch Norfolk is brilliant! Each HW org was set up in different ways; there wasn't a set format. So I couldn't guarantee they'll all be this good.

But forming a local group, however small, looks more powerful than an individual challenging the status quo. And all the back up guidance etc is all out there now (with or without your own HW!)

[Essexlil]

Hi, brilliant! Here in Essex I’m afraid I’ve just had to pay £282 for three months supply of T3. My GP said it’s not on their formulary. I’ve written to our MP -Priti Patel complaining bitterly about the unfairness about the fact that if I lived 20 minutes away in Suffolk the NHS would’ve provided it on a prescription from the same endo! I’ve given permission for her to contact people on my behalf and her office say it’ll be taken up urgently - do you think I’ll get anywhere as I can’t afford to keep funding this and it’s unfair to say the least!

[TaraJR]

Essex seems to say people can have it, from an endo. A GP can't initiate it, but that's country-wide.

ipswichandeastsuffolkformul...

If you're on Facebook, do join ITT Improve Thyroid Treatment group. We have template letters with details of all the national guidance and parliamentary statements on T3 that should be being followed.

[tattybogle in reply to TaraJR]

i think essexlil is midessex

midandsouthessexformulary.n...

where its (red) hospital only medicine ~ needs Individual Funding Request from endo , and has to stay with endo/ hospital prescribing not be transfered to GP

" New Patients: To initiate an IFR is required. New patient prescribing should remain with the hospital specialist. Primary care prescribers should not initiate for any new patient"

[TaraJR in reply to tattybogle]

Thank you. Their links don't all work...

Ridiculous that areas next to each other are so different. But we're used to 'ridiculous'...

[linda96 in reply to tattybogle]

Hiya, the NHS have said that an IFR is NOT required. That was about 3 years ago. And if your Endo agrees to you receiving T3 and as it is now only £42 per pkt it’s unreasonable for an IFR to be raised.

Go to your ICB and ask if an IFR is necessary as the cost has reduced.

[tattybogle in reply to linda96]

Essexlil see the reply above from linda96.... about individual funding requests

[Imaaan]

Bravo to everyone involved and may it inspire others around the globe.

[TaraJR]

I'd say that anyone could do this. We're only 2 ladies in Norfolk. Get the press involved. Remain polite, even though it's sometimes hard, and stay professional.