Has anyone else had a reply to 'Humphrey's' template letter and call to write to Jane Ellison through their MP ?

I today received a five page letter from Jeremy Hunt dealing with the eight points made. Unfortunately, I don't have a scanner but to give you an idea of the utter frustration and rage I am feeling at the moment, here is his reply to point 5 -Investigation into why NHS is paying exorbitant prices for T3 when the rest of Europe is not:

" The UK already has amongst the lowest prices for branded medicines in Europe and it's prices are referenced in many countries across Europe and beyond. This is shown in the most recent pharmaceutical price regulation scheme (PPRS) report to Parliament.

Under PPRS,, pharmaceutical companies may not increase the NHS list price of branded products before obtaining approval from the Department, other than an NHS list price change subsequent to the requirements on flexible pricing. Approval is based on a set of criteria under the terms of the scheme.

Within the flexible pricing provisions, companies may propose an initial price for a medicine that reflects it's value at the launch of the medicine, while retaining the freedom to increase or decrease this original price list as further evidence or new indications for the medicine emerge and change the effective value that the medicine offers to NHS patients."

The rest is in the same vein - all talk and no action !

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  • What a load of gobbledy-gook - and he still has not answered the question. So like - 'Yes Minister '.....

    Am sorry you have had such a disappointment.... I once wrote to someone doing research on obese Mothers-to-be who were going to be given Metformin to stop the babies being obese in the future. It was at the beginning of my thyroid journey and I expressed a wish that they should first be tested for Thyroid issues ( proper testing that is ) The reply was long and patronising and the last line said that mothers with an existing condition would not be included.... Well how would they know with such diabolical testing techniques.... It is such a horrid thought what may happen to those babies. It was an article in the Sunday Times....

    Keep up the good work...

  • Hubby has just reminded me how JH wormed and squirmed his way out of issues at the Murdoch Enquiry. Also I have just been told he is the richest man in the cabinet - so why would he worry about how much people are charged for T3. Finally he needs a geography lesson as Greece is in Europe - and we pay just over two euro for a pack of 30 x 25mcg.....without a prescription.

    And now I am angry too with the reply you received .... :-)

  • You were not asking him about medication in general . You were not requesting information for the lowest branded medications in general in the UK.

    You were asking WHY is liothyronine far more expensive than in other European countries. He hasn't answered your question about T3 which must definitely be the HIGHEST price in Europe. You wanted to know why the reluctance to prescribe an alternative (even on a trial) thyroid gland medication which we believe is due to the cost (most probably). The BTA/RCoP ignored a Rebuttal Dr Lowe sent to them, and they did not even have the courtesy of a reply to him, despite two or three yearly requests for an acknowledgment.

  • Thanks Marz and Shaw. I wish I could be bothered to type out the rest of it....beggars belief. Here is his reply to the last point:

    8. Lastly, and perhaps more importantly, we need an acknowledgement that current diagnosis and care is inadequate:

    " While I note your constituent's concerns, it is for NHS organisations to follow clinical guidance on the diagnosis and management of conditions. People who are unhappy with the standard of care they receive can raise their concerns with the provider or commissioner of care through the NHS complaints procedure. "

    In other words, we are being sent round in circles. I had such high hopes. It does make you wonder about the people in charge of this country....more about power and greed. What else can we do when the people at the top just fob us off and don't listen?

    On my second glass of wine!!

  • if this is not typical BUNKUM I really don't know what is ...... are you sure it was jh that replied because it seems to be definitely from 'sir humpfrey Appleby ' .....nut not nessesarily as good --- maybe he could learn from the show .......when are we going to get someone that will stand up for what they actually believe AND STICK TO IT .?????? .....alan xx

  • Thanks you all for your kind support. It has given me confidence to write back to my MP. Here is an extract :

    Jeremy Hunt has not answered the questions and I'm left feeling fobbed off with gobblygook and standard replies with no attempt to answer the questions and problems experienced by the large majority of people suffering from thyroid disease...five pages that resolve nothing.

    For example, below is an extract from Health Unlocked, Thyroid UK.

    " Following my recent blog to say I had bought T3 in Crete for 1.20 euro a box of 30 - 25 mg tablets, I wrote to my MP and asked why I can buy it for this price in Crete and Mercury Pharma charge the NHS £56.00 for a box of 28 - 20 mg tablets.

    He replied - " I understand your frustration. The UK's regulation of the drug industry is drastically different to that of Crete. In many cases only one supplier is authorised and when that single supplier encounters problems the supply falls and the price subsequently increases."

    "This seems like a typical politicians reply, there is nothing to say it could be looked at, he doesn't even seem worried about the difference in cost. No wonder the NHS has no money. Perhaps you can tell me how long the cost has been £56.00 because he seems to be implying that the cost has only recently been high due to the shortage. And I also want to know why there is only one supplier. That surely is the main reason for the high price, they have the monopoly and that has to be wrong in any industry.

    Sheila "

    Since this was written, the price of T3 has doubled to over £126, with patients, including my daughter, being told that it will not prescribed in future. Jeremy Hunt's reply does not explain why the NHS is prepared to pay this price when it is available In the rest of Europe for 1.20 euro. This is far from satisfactory and I would insist that he investigates this further.

  • We only have one supplier of T3 here in Crete - UniPharma....

  • So is Hunt your MP? [Suffering!!]

    Or has your MP passed it on to him?

    Or have all Tory MPs perhaps been issued with a range of stock answers for various common questions?

    Was reading about lobbying etc in the Grauniad. Oh Dear, I can feel my inner 'Ragged Trousered Philanthropist' rising for a fight. Had missed the original request, will try writing to mine: Sarah Wollaston

  • My MP passed it on to JH and not Jane Ellison. If it helps, below is my version based on Humphrey's original template:

    In December 2013 Mrs Caroline Spelman, Conservative MP for Meriden, raised the subject of hypothyroidism in Parliament. Here is a link to the Hansard debate, for your convenience: publications.parliament...

    A large number of people in this country with thyroid disease find that the limited treatment options available to them do not help them. Many have difficulty getting diagnosed at all. I belong to an online community where such people share their problems : Health Unlocked - Thyroid UK.

    Mrs Spelman raised the subject as a result of one of HU-Thyroid's Trustees contacting her. The Parliamentary Under-Secretary of State for Health (Jane Ellison) was present. Her response to Mrs Spelman is at 11.13 on the Hansard report linked above. This was knowledgeable, as far as it went. However, the fact that there are so many people still so unwell with thyroid problems points to some kind of failure in the current diagnosis and treatment of thyroid malfunctions (there are a number of different - sometimes very subtle - ways in which thyroids can malfunction).

    Mrs Spelman recommended setting out some of the more important changes the HU-Thyroid website members would like to see in the way the NHS treats thyroid patients. She advised that we write to Jane Ellison, via our MP, with our concerns. Below is the list of things we would very much like to see improved:

    1. More research into what is causing the epidemic of thyroid disease across the world.

    2. Better training for Endocrinologists and GPs.

    3. Investigation into a broader panel of treatments for thyroid malfunction. Many hypothyroid patients do well on Levothyroxine alone, the only drug offered by the NHS. However, a significant number do not and become desperately unwell and unable to function (my sister is one of them).

    4. A regular, broad, panel of blood tests to be carried out on thyroid patients who still exhibit symptoms, to assist in diagnosis and treatment. At present, most GPs rely on the TSH blood test alone (which varies throughout the world) and mainly disregard symptoms. A malfunctioning thyroid affects every cell and organ in the body. (In my own case, once I was on the right thyroid treatment, my heart, blood pressure and cholesterol problems were resolved and I was able to discontinue expensive drugs). This has huge implications for savings in the NHS.

    5. Investigation into why the NHS is paying exorbitant prices for T3 when the rest of Europe is not!

    6. A ban on the practice of drug companies paying commission etc to surgeries and GPs to use their more expensive drugs.

    7. Thyroid issues to be acknowledged under occupational health legislation to help safeguard individual employees, and potential employees, ensuring that the symptoms and impairments experienced are considered by NHS and employers; the current failure to do this is ethically wrong and discriminatory .

    8. Lastly, and perhaps most importantly, we need an acknowledgement that current diagnosis and care is inadequate.

    I should be most grateful if you would pass this letter on to the parliamentary under-secretary of health, Jane Ellison.

  • Thanks for this, will read Hansard etc links and copy this and add my personal details and send to SW. I think I'll send a separate copy to Jane Ellison telling SW I've done so ... and maybe asking SW not to bother sending it to Hunt as I've already seen the tripe he sends as a reply. Well done Polaris.

  • That's great GrittyReads! I have this wonderful vision of everyone on HU copying and pasting their version of Humphrey's template and bombarding their MPs and the Healthy Ministers until they finally do something!

  • Have you posted on the other sites? I only recently joined on here as I was surprised my GP wasn't testing more to do with thyroid, as I'm PBC-ish and he's supposed to keep an eye on my thyroid readings (going to see him next week) as well as liver function tests. Maybe if we posted it onto other HU sites, everyone could do a version that applied to their condition? If nothing else, maybe we could eventually query Hunt's excessive waste of paper while sending out 1000s of replies without never actually addressing the questions/issues.

  • Good points! I'm sorry you have PBC. Is it connected with Hashimoto's?

  • With a lot of auto-immune conditions you are at risk of getting others. Hashimotos is apparently one of the ones that people with PBC can get, along with Sjorgens and Lupus. My PBC diagnosis is a bugbear, as I only test +ve for Antimitochondrial antibodies [one of the 3 main diagnostic criteria for PBC - strictly speaking 2 are needed for a firm diagnosis] while I don't have abnormal 'liver function tests' (and also don't have any PBC symptoms). I was told about the AMAs 22 years ago, but wasn't freaked as never told about PBC (no internet etc too) Gp just made vague noises about arthritis type conditions and liver. After 12 years of perfect 'lfts' I was told to stop the annual tests as I would never develop anything. 6 years ago a new-to-me GP in a new area told me I'd got PBC (she didn't explain it, I googled it, worst Xmas of my life). Then the consultant she sent me to told me all was clear apart from the AMAS, but then still gave me a diagnosis of 'pre-symptomatic for PBC' which plays havoc with insurance. Plus I know plenty of people who are exactly the same, but just have to say they have annual tests. I'm still symptom-free and lfts good, so my GP is interested in us challenging my diagnosis. As I gird my loins for this, I'm trying to check that all other areas are also clear.

  • That's a good idea - copying to Jane Ellison. Both follows procedure and circumvents it at the same time ;0)

  • Apparently the correct procedure (I was told by Caroline Spelman MP when I wrote to her - she's not my MP) is to write to one's own MP for onward transmission to a minister.

  • The best of it is - I haven't heard diddly even from my own MP, let alone a health minister! [sighs] better go and poke him with a blunt stick, I suppose ... [wanders off muttering darkly]

  • Words fail me...what are they there for !!!? Mine's John Bercow - he at least appears to care and takes things further.

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