Latest in my long battle to get NDT on the NHS: who do i write to next, getting confused?

Hi all

Been self medicating with NDT since aug.12. I switched GPs a couple of times following a string of service failures. The GP i am with now is not too bright (was registered here a while ago and they werent great) but there is not much to choose from in Lambeth, which the NHS itself found is one of the worst PCTs in UK.

So this one agreed to find out whether she could prescribe NDT (she knows nothing about it). I already wrote to her with a load of supporting info about the benefits.

She was going to write to the PCT as she had never heard of it being prescribed. After hearing nothing back from GP, i obtained a copy of the paperwork under the Data Protection Act. I had thought she'd be writing to Lambeth PCT's Chief Pharmacist, as I understood the funding decision lies with the PCT

I have a copy of an email where she has used the internal NHS system to email 'mediicinesmanagement' and had a response from an endo at Kings College Hospital who has made the usual ill informed statements about T3 toxicosis, etc.

I can easily write back to GP with evidence that his statements are incorrect - but i've already written her lengthy letters about NDT. Would she now need to write to the PCT about the funding? Should I write to the GP, or to the PCT's Chief Pharmacist (who has as yet had nothing from my GP). Is it right that even if she had decided to prescribe me NDT, that she would first have to write to Lambeth PCT Chief Pharmacist?

i want to make sure i am directing my efforts to the right place as this whole saga is getting tiring (i am fighting on so many different levels as i have other diseases that I am also managing myself due to NHS failures)

5 Replies

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  • I don't know for sure bluedaffodil,

    I went to see my GP last thursday following a letter from the endo to her asking to prescribe me 150mcg of T3 daily.....

    when I went to see her she said that she 'talked to the PCT prescribing lead' who said to her she can prescribe it for me 'so long that it is an established treatment and that is the only medication I need ie: the other hypothyroid medications are ineffective for me'

    that is basically 'me', I am 'established on T3 as I've been taking it for 7 months now and no other medication relieved all my symptoms, not even NDT.

    She is asking the endo to 'confirm in writing that this is the case' and then it will be added as a repeat prescription on my name.

    but as it's turning out in my favor I did not 'investigate' to find out if the GP 'has to' speak to the prescribing lead or not........she never did in the past when I was put on other meds so maybe this time she did as it would go 'over a certain budget??" (my T3 will cost them £200 a month).

  • Thanks, i guess i need to find out who the prescribing lead is for lambeth PCT

  • I'm sure if your ring the PCT they will tell you x

  • I agree -you can contact the PCT directly yourself and ask if they allow prescriptions for this in your area. However it comes down to the individual doctor themselves as it has to be prescribed on a named patient basis as Erfa and other NDT's are not listed. This I found was the stumbling block. If the PCT says they are fine with it being prescribed then you will have to shop around, first with your surgery to see if any of the docs will prescribe, and if that is not successful your best bet is to write to the GP practise managers in your area asking for it and why so that if you join their service it is on that basis.

    This is what I did bluedaffodil -and even though i have now had it on the NHS for nearly 2 years a while ago the GP in the practise I had joined withdrew his permission (and it seems they can do this at a drop of a hat!) but luckily for me another GP in the surgery agreed to prescribe it for me. it is all a huge outrage as I have been formerly diagnosed with hypothyroidism and been donw a long oad trying out the standard treaments! LOL. I found the private doctors support helpful in backing your claims but then i had to push hard to achieve it.

    I wihs you every sucess -don't allow them to say no without a written explanation and make sure that your arguement shows alongside it's benifits to your health that it wil be cheaper to treat with this med then give you a load of meds to deal with symtoms....everything as you will have found out is money driven! xx

  • The Gp is making out like it is up to the PCT. I've already written to her. I now have a copy of the advice she was given by some or other endo at Kings. I still dont have an answer so need to know who the funding decision ultimately lies with

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