Help with IFR

[efm2022]

Has anyone completed an IFR (individual funding request) for Hashi/hypo with the NHS? My doctor has told me I need to complete the questions I’ve attached. Any help doing this would be appreciated x

[Jaydee1507 Administrator]

Can you tell us for what reason you are being asked to complete this form?

[efm2022 in reply to Jaydee1507]

It’s for t3 which I currently pay for

[Jaydee1507 Administrator in reply to efm2022]

If Endo is refusing to complete the form then perhaps you could contact your local ICB and ask them about it.

[efm2022 in reply to Jaydee1507]

They haven’t refused but I know they won’t complete it as they refused me the t3 trial. It was suggested to try this route by my pharmacist/gp. What is ICB please?

[Jaydee1507 Administrator in reply to efm2022]

Ah so they haven't yet recommended or prescribed T3.

Is there a different Endo you could try thats on the Thyroid uk list? Email: [e-mail]

Pick one or two who might be suitable and then make a post asking for feedback on them. Try and get referred to one that has good feedback.

Which general area do you live in?

It sounds t me like they are sending you around the houses.

ICB is Integrated Care Board who are the area managers of health care, sort of.

[Starseed56 in reply to efm2022]

ICB as Jaydee says is the integrated Care Board. They used to be called the CCG - Clinical Commissioning Group who basically decide what drugs are allowed etc (all about money of course!) I was lucky that my last GP sat on the then CCG, as I’d moved and switched doctors there was some question as to whether I’d be allowed to continue taking pregabilin (prescribed for Fibro), lucky for me I think that GP liked me and put forward my card and agreed the funding. Some areas prefer to use gabapentin which isn’t such a “clean” drug.

I think it’s appalling you’d have to complete that form for a drug that’s so vital to your body’s functioning.

I’m awaiting an endo appointment, not been seen for maybe 15 years!! I plan to ask if I can be prescribed Levo and T3 (liothyronine) instead of ERFA which costs me a chunk of money each month. If they refuse, I’ll go to the ICB to argue the case (nothing to lose!)

if you do have to complete the form maybe take the genetic test with Blue Horizon which may show you’re a poor converter from T4-3 and therefore need it to be prescribed?

good luck! 💜

[efm2022 in reply to Starseed56]

I’m sorry for the late reply. I didn’t get alerted weirdly! Can you tell me what the genetic test is? Does it have a specific name?

I do feel like I’m going round in circles. I am Lancashire based and managed to find an endo in Liverpool but they refused my appointment. I haven tried anymore since that. My doctor is trying to help but admits she doesn’t know what to do. I will go back to the list and see if I can be referred to any others that will prescribe it for me.

Thank you everyone again x

[SlowDragon Administrator]

usually an IFR is done by your endocrinologist (assuming it’s for prescription of T3)

[efm2022]

my doctor has told me to fill it in for her. My endo told me lio is black listed in this country so I know he won’t help complete it.

[Fluffysheep]

I had a right to do with my GP surgery over this. They were insistent that my endo do it. My endo, who is in a different county and therefore different ICB point blank refused and said it wasn't his job to do it. He then phoned me having a bit of a rant and telling me to tell my GP to stop sending him emails (not sure what he thought I could do about it, but there we go!).

This had been going on for a few months, and after the phone call I finally lost the plot, and spent hours and hours constructing an email of complaint to the practice manager. I basically detailed my whole thyroid diagnosis timeline, including when I first started self-medicating with T3 right up until receiving a prescription for T3 from my NHS endo and asking why they were refusing to fulfil it. I talked about my symptoms, and linked to evidence based medical studies to highlight some of my points.

It took me about 6 hours to do this, and I cried at the end - I think the whole thing had been such an emotional drama, and laying it all out on paper was just the final straw.

Anyway, I then got a text whilst on holiday asking if they could use my complaint as evidence towards the IFR. I replied of course they could. A week later, I noticed that T3 medication had been added to my prescription list. I couldn't believe it to be honest!

Once I was home, I had a call from the surgery a couple of weeks later confirming that the IFR had been successful.

My endo and I have an 'interesting' relationship! He didn't/doesn't seem to know the process surrounding liothyronine - when I first visited he said he would write to my GP asking them to prescribe it, but that he couldn't prescribe it himself. Obviously I explained that wouldn't work as the process needed to be that it came from him first for 3 months, but he didn't listen.

However, for all his faults, he did eventually come up with a prescription for liothyronine, which he has increased, and however much we argue he does write supportive letters to my GP about my need to say on T3 medication.

[TaraJR]

You should NOT be required to go through an IFR process. This was even brought up as a question in the House of Lords. This is included in a template letter that ITT Improve Thyroid Treatment has. (See us on Facebook)

November 2019 - Baroness Blackwood (Parliamentary under Secretary of State for Health & Social Care) stated in a House of Lords written answer that “an Individual Funding request (IFR) is not intended to be used for rationing treatments, such as liothyronine.”

theyworkforyou.com/wrans/?i...

[efm2022 in reply to TaraJR]

Thank you for this. I will look into it. I just wish I had a supporting doctor/endo/nhs without having to go through all this just to get what I need. It’s devastating as a single parent that I have to use what little money I have spare, to keep myself well for my children.

[arTistapple in reply to efm2022]

Efm it’s an absolute disgrace. I am furious on your behalf. No-one seems to understand the vulnerability this condition brings on so many levels. And you are a single parent! It’s appalling. Do look into what TaraJR suggests, she has worked hard for her group with great success. A chat with your CAB might throw up some welfare advocacy in your area who might be able to guide you too. These roads are far from easy.