[Closed] Polite request to put pen to paper ...

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Thank you very much. 🙂

Having to self fund bloods and medication seems a bit rum, how come that's the case ? Don't they believe you ? 🙂

I'm afraid that I can't go into detail due to a formal complaint lodged with the Parliamentary and Health Service Ombudsman. However, my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

CCG's have been telling GPs that they can't prescribe a particular medication even if the patient has been taking it and has regained their health.

It's madness.

Signed

You deserve better than that.

Signed.

Signed - hope you get positive outcome!

Thanks chaps. 8)

Signed 😀

Signed, I know what it's like to struggle to get the healthcare you deserve.
Good luck.

I pretty sure I signed it, although it told me I had to click a link. Which when I went back to the form I couldn't see.
Hopefully it's all gone through now.

You sign it and the system sends you a confirmation Email which has a link embedded. Click on that EMail link to confirm your signature.

allthepies - Thanks. I now have cofirmation 🙂

Signed. Good luck with it and for the future.

Signed, gotta love it when effective medicines* can't be prescribed because of industry led red tape.

*

my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

Thank you. 🙂

In Scotland there is a Petition that's been rumbling along for several years. The MP Elaine Smith has been involved, herself a sufferer.

http://www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

Signed

Signed Elaine , that sucks , do you want me to share it on FB and get some of the old gang on board ?

Done. Good luck with it

Thanks all, much appreciated 🙂

Signed Elaine , that sucks , do you want me to share it on FB and get some of the old gang on board ?

If you wouldn't mind oldfart, thank you. 8)

Just to say that I don't have a problem with funding my own meds, after all I can buy them from abroad considerably cheaper than it costs the NHS. Cost of blood tests is horrendous though, am currently needing to spend a couple of hundred on two tests.

It isn't only women that are affected by this condition, this poor chap is clearly suffering:

[img] [/img]

As others, I've signed

Signed All the very best of luck to you.

Signed. 🙂

Can't you use the results from your bi-annual thyroid blood test that you'll get from your GP as part of your standard or usual treatment offered? Making the huge assumption that you have bi-annual blood tests etc.

Can't you use the results from your bi-annual thyroid blood test that you'll get from your GP as part of your standard or usual treatment offered? Making the huge assumption that you have bi-annual blood tests etc.

I 'manage' my condition but my Consultant 'monitors' me. No GP involvement. Blood tests don't tell the whole picture, depending on what's done. It is not straight-forward!

I thought it might help with "I've had to fund my own blood tests". I ask for and get the full breakdown of my blood tests at GP's and hospital. I have no idea how to interpret the data but my wife does.
I'm intrigued though. I would be really interested (genuinely) to know how you 'manage' and your consultant 'monitors' your thyroid condition without any involvement with your GP. Not even letting your GP know what's going on with treatment? I'd love to be able to cut my GP out of my treatment plan (I also have a thyroid dysfunction along with 'the other thing which is related').

signed. I understand some of the difficulties and hope you get all of the support and help you need.

signed, hope you get the best outcome

However, my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

This is a little hard to understand.. Post code lottery on prescriptions maybe ?

As a "normal" hypothyroidismist, signed. Good luck.

Signed..
How can you tell Mick Hucknall is a sufferer?? Is one symptom an ability to create crap music?

Signed 🙂

Signed, hope you get a result.

Signed.

Good luck.

I thought Mick Hucknall's main problem, apart from tedious white soul and an ego big enough to have its own postcode was being a priapic shortass.

@ monksie - with apologies but unable to answer that. What has helped me is obtaining copies of blood test results complete with reference ranges, you're entitled to ask for this but there may be a small charge for printing. I've also read extensively and educated myself on my condition, knowledge is power.

The UK thyroid forum that I support has 20,000 members, 5,000 have joined in the last 3 months.

Everyone - thank you so much for sparing your time to sign. It is appreciated. 8)

My missus suffered with thyroid problems for a long time. Thankfully she ended up going private and getting better help. What she endured at times was properly horrendous (I'm talking about the condition she was in, not the treatment/advice she was given).

Signed.

Good luck CG. If you think it might help you to have a chat with her then let me know.

Signed, best of luck.

Mick Hucknall is hypothyroid and has recently gone on tour. I will be interested to see how much he can do as he is determined to treat his condition through diet alone. He is refusing to take drugs (lolz) but fails to realise that he needs hormone replacement meds which isn't actually drugs.

Done.

Duly signed.

Signed

So to confirm is it signing a petition to get the NHS to prescribe a non licensed drugs, that has had no clinical trials, or to get the NHS to pay for the trials?

Usually drugs companies jump at the chance to produce a drug/remedy and hence pay for clinical trials. I find it odd that clinical trials have not been completed.

I would be even more worried if the NHS would prescribe an unlicensed, un trialed drug.

I thought randomised, controlled trials comparing combination T4/T3 vs T4 alone had been conducted already?

FunkyDunc - natural dessicated thyroid has been around since I believe the early 20th century, it was the only product given to sufferers at that time as Thyroxine hadn't been developed. It was literally made up from sheep's thyroid gland and many people recovered their health. It's still the same today as it closely mimics the human thyroid, I believe porcine is used too.

So, in answer to your pertinent question, it's non-licensed and has not had clinical trials. It must be pointed out though that it has never been recalled, the same can not be said for Thyroxine.

vickypea - yes, you're correct. In an earlier post I've said that prescribing T3 is not being sanctioned by the CCG's due to cost. The Petition also refers to natural dessicated thyroid, see my reply above to FunkyDunc.