IPFR application: Hi has anyone come across this... - Thyroid UK

Thyroid UK
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IPFR application

ElizaMaye
ElizaMaye

Hi has anyone come across this? I’ve never heard of it!

I can’t believe this is happening, after 9 years of being ill I finally got referred to an endo. I have had a letter back today saying that after careful consideration of tests I would be a candidate for a trial of T3 (all I ever wanted to hear!) but that it would require an IFPR application that they expect will be rejected. What the hell am I supposed to do now? I’m trying so hard not to cry right now because I know I won’t stop 😢

16 Replies
oldestnewest

I don't know about the IFPR application but ifyou have the energy I would copy the letter you've received to MP and find out who to send it to in House of Lords who have shown an interest in the plight of thyroid patients. I know it won't help short term though.

ElizaMaye
ElizaMaye
in reply to Nanaedake

Yes I saw something yesterday about a group wanting letters so I’ll look into that.

helvella
helvellaAdministrator

Is this in Wales? All I could readily find applies to Wales:

Individual Patient Funding Requests

Every year Aneurin Bevan University Health Board receives an NHS budget allocated to us by the Welsh Government to pay for our local population’s health services.

In addition, the Welsh Health Specialised Services Committee (WHSSC) plan and provide specialised and tertiary services on behalf of Health Board in Wales to reduce duplication and ensure consistency.

Unfortunately the demand for NHS services is always greater than the money available, so we have to prioritise the use of funds carefully as it is not possible to fund every available treatment.

Whilst the vast majority of treatment and services that patients need are offered routinely on the NHS, there may be some cases where a decision has been taken not to routinely provide the treatment. This may be because there is limited evidence for how well the treatment works in those patients or because the treatment is very expensive and doesn’t offer good value for money for the NHS.

There will also be instances where a treatment is still very new and a decision hasn’t been taken yet on whether it should be offered routinely on the NHS in Wales.

Your GP or hospital consultant can ask us, on your behalf, to fund a treatment that we would not normally provide for you on the NHS in Wales. The NHS Wales Policy, Making Decisions on Individual Patient Funding Requests (IPFR), clearly sets out how these requests are dealt with, and how an application can be made;

IPFR Policy

IPFR Application form

IPFR Request for a review application form

wales.nhs.uk/sitesplus/866/...

ElizaMaye
ElizaMaye
in reply to helvella

Yes it is in Wales, thanks I’d also found this and had a quick read but don’t know exactly what it means for me.

lynmynott
lynmynottAdministrator

In England they are simply called Individual Funding Requests. You still have to prove to the CCG that you fit the criteria of "exceptional". Gather together any evidence in the form of test results, signs and symptoms and reports from GP/Endo. Best of luck.

ElizaMaye
ElizaMaye
in reply to lynmynott

Thanks, it will be the endo making the request so i don’t think there’s much else for me to do in terms of that.

It is different in every county I guess as I have just started a trial of T3 last week and I haven't had to put together anything. I am not sure if my consultant did but in my letter it did state that I now fall in to the criteria for a trial of T3 under the NHS England conditions. I believe that as long as they can prove you have done everything to try an alleviate your symptoms but your consultants cannot keep your results steady or that they fell that you are not converting well due to your blood results then that should be enough for the trial. But I am not a Dr or a person that reviews these IPFRs so I may be completely wrong.

I really do hope they put your case through strongly for you to be given T3 as it can make all the difference to our lives.

MCP x

ElizaMaye
ElizaMaye
in reply to MCP80

Thanks, that’s so lucky, I’m glad for you. They’ve made it pretty clear that they don’t think I’ll get it.

MCP80
MCP80
in reply to ElizaMaye

Until they actually say no there is hope. If they do reject it forward to your MP for their help.

ElizaMaye
ElizaMaye
in reply to MCP80

Thank you I was just wondering about doing that. Ill try and find out if anyone has had success with that.

shaws
shawsAdministrator

To offer some success to one hand and then withdraw from the other is quite horrible. Hope dashed. They automatically believe it will be rejected, even before the apply.

I have just posted the following elsewhere and I do wish Endocrinologists - at the very least - should be willing to find out why patient isn't recovering. Maybe give a copy of each to Endo and your GP.

hormonerestoration.com/file...

hormonerestoration.com/

frontiersin.org/journals/en...

ElizaMaye
ElizaMaye
in reply to shaws

Thank you I will have a look at those :)

SlowDragon
SlowDragonAdministrator

If an NHS endocrinologist says you have clinical need you should get funding

It's ridiculous these hoops to jump through.

Could your endo give you private prescription, if funding is refused

EU T3 from Germany is very cheap, available by prescription only

I just don’t see the point in what I went through going to see them! I’m going to go and speak with my gp tomorrow as I was wondering about a private prescription. My mum lives in France and can get me euthyral with an English prescription, I’ve never heard of that though and I’m not sure if it’s any good but I’d be willing to try it!

shaws
shawsAdministrator
in reply to ElizaMaye

It should be fine as it is a combination of T4/T3 which suits many.

drugs.com/international/eut...

ElizaMaye
ElizaMaye
in reply to shaws

Thank you, I think I will look into paying for it.

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