Can anybody translate this into English, please?

I have shot to pieces all the arguments offered by my CCG for me not being given NDT on an NHS prescription. They have now retreated into a hole, have failed to offer me any apology for lying to me, no explanation as to why, when both NDT and levothyroxine have never been subjected to medical trials, the former is blacklisted, the latter greenlisted, and assorted other mysteries.

They now tell me, when I apply for a review of their decision to refuse me NDT that:

"....desiccated thyroid is not suitable to be considered via the Individual Funding Request (IFR) route as it is not a Payment By Results (PBR) excluded drug and there is no funding mechanism to recharge it back to the......CCG".

If true and relevant, this would, of course, render NDT impossible to get by way of IFR in ANY CCG in the UK (incl Scotland?) and perhaps make every excuse given by the BTA, NICE and others totally unnecessary.

Translation of above quote required and your own ideas on this, please.

I am trying to see my MP, but, like me, he also does not understand gobbledygook.

[Lalatoot]

I don't think they prescribe NDT in Scotland as it does not have a UK licence.

[london81]

“desiccated thyroid is not suitable to be considered via the Individual Funding Request (IFR) route as it is not a Payment By Results (PBR) excluded drug and there is no funding mechanism to recharge it back to the......CCG’”

I understand this to mean we won’t pay for this drug because it’s not on our list of approved medication. and too expensive. ridiculous when you think of the drugs and resources being given to people suffering on levothyroxine and not getting enough t3 ( my father is a prime example - undiagnosed hashimotos all his life now on shed loads of mental health and other drugs, CPN, GP, psych, etc..., and deficient in all kinds too).

I’m on NDT and starting along the route of testing my DOI2 gene and requesting t3. my understanding is there is insufficient science to force the CCGs to allow t3 or ndt but t3 is allowed in limited cases ( and its hard enough even then). in my opinion, we all need to make as much noise as possible- i’ve written to my former MP ( a doctor) and woman’s hour at radio 4, etc etc- i throw in the appalling treatment of thyroid and hashis patients at every opportunity, to anyone who will listen.

I am following this issue closely and having already raised the general issue with my former MP i plan to bring a more personal and specific issue up with new MP when i’m refused t3.

ask your MP to raise the issue of thyroid patients sub optimal treatment by nhs, and refer him to thyroid uk if he wants material or research. as for your personal case i can only suggest you try to find research that backs up the use of NDT and resubmit this with details of your improvements while self funding NDT. complain as much as possible and ask your MP to do the same if they can.

[humanbean in reply to london81]

my understanding is there is insufficient science to force the CCGs to allow t3 or ndt

The problem with the science is that so much of the research which is done is of very poor quality.

For example, imagine research being done on hypothyroid people to see how they react to T3. People are deemed to be suitable as subjects for this research if they are on 100mcg of Levo and their TSH is in range and they are aged between 40 and 70.

The research involves swapping out various amounts of T4 for various amounts of T3.

Problems that arise from this kind of stupid design...

1) The subjects may have a TSH anywhere in range and someone with a TSH 95% through the range is considered to be just as useful as a subject and just as healthy as someone with a TSH which is 20% of the way through the range.

2) Some subjects may be on Levo because they have had their thyroid removed or because they have idiopathic hypothyroidism (no known cause), or they might have Hashi's and hence fluctuating results, or they may have central hypothyroidism or... How can they do research on such a diverse array of people, and expect to make sensible decisions on the results? Hypothyroid people are effectively treated as clones of each other - the cause of their condition is deemed to be irrelevant.

3) In the reading I've done on historical research into T3 the researchers have no idea how much T4 to remove and how much T3 to give in return. So someone could have 100mcg reduced to 50mcg and be given 5mcg of T3 in return. I also read one old paper where people had 20mcg of T4 taken away from their existing dose and had this replaced with 20mcg of T3. Not surprisingly some people ended up with palpitations and tachycardia and T3 was deemed to be "dangerous".

All of the things which are bad about treatment as it currently stands is often carried over to research. Under-treating patients is fine. TSH of 4.5 is fine if the range is 0.5 - 4.5, for example. And then they play silly games with people's doses and make them worse. Case closed, T3 is dangerous.

Fairly recently, there was some "research" which carefully controlled the dose of elderly patients with subclinical hypothyroidism to make sure that their TSH stayed close to the top of the range (i.e. under-treated the patients), the patients didn't get much or any benefit from their treatment and so it was decided that elderly people in this scenario don't need treating at all.

nejm.org/doi/full/10.1056/N...

mdedge.com/endocrinology/ar...

Calling for more research is all well and good, but the research has to be well-designed. But instead it is so often (usually?) absolute crap.

[london81 in reply to humanbean]

this is fantastic thank you. i have screen shot to read it in more detail later, so that I can really digest what it says and think about how i can help i. our long standing fight for good science!

[humanbean in reply to london81]

Are you aware of the Scottish petition set up by Lorraine Cleaver? One of the documents that was sent by the government to support the standard approach to T3 prescription is this one which describes the "evidence" that T3 (and NDT? I can't remember) shouldn't be prescribed :

parliament.scot/S4_PublicPe...

It was linked from this page :

parliament.scot/GettingInvo...

Page through Annex A and at least some of Annex B.

I had a look through some of the reference papers and although some didn't seem to be too bad there were several which were awful.

[london81 in reply to humanbean]

i’m not actually but i did see elaine smith msp brilliant speech. will have a look at the links you provided, thank you x

[TaraJR]

What did you put in the search box for NDT? I don't know the brand names!

[sazzle2680]

I work for a CCG....PBR is the method by which hospitals charge the CCG for your care. In essence every hospital appointment/attendance or admission to hospital/procedure or operation/hospital prescribed drug/hospital diagnostic (scan, blood test, ECG etc) all have an associated PBR code and price (tariff). It would be the equivalent of a barcode for a product in a supermarket. If there isn’t a PBR code for something the hospital is unable to charge your care to the CCG. The same way that a supermarket wouldn’t be able to ring the item through the till. The PBR codes are set nationally by NHS England for all CCGs, it’s not something the CCG picks or chooses. This is to stop a postcode lottery.

The only route for an individual to receive care that falls outside of PBR charging (like overriding the barcode at the till) is IFR but your request isn’t suitable to be considered under this route. Again with IFR there is nationally set criteria that the CCG needs to follow.

I don’t want it to sound like I’m making excuses, but in the majority of situations the CCGs hands are tied by NHS England as their regulator. Sadly CCGs also have very limited resources and therefore can’t be everything to everyone. Every year the CCG plan how their entire budget is spent at the start of the year. If something new comes up then the CCG need to decide what they’re going to stop paying for in order to pay for the new thing. To ensure fairness and prove value for tax payers money CCGs must heavily rely on clinical guidance from organisations like NICE and BNF. If NICE don’t approve something and/or it’s not licensed in the UK then the CCGs can’t make a case to spend money on it.

Sorry, I appreciate this must be so frustrating. As a fellow Hashimotos sufferer (which has destroyed my fertility - I can’t get either my Hashi’s properly stabilised nor am I eligible for IVF on the NHS) I do feel your pain.

[StitchFairy in reply to sazzle2680]

An interesting insight, thanks for explaining.

[london81 in reply to sazzle2680]

i appreciate you explaining this.

The thing is- as you probably know- the nhs is spending way more on treating symptoms of untreated hashis/thyroid disease. my father wasn’t diagnosed until his 60’s at which point he was psychotic, had been sectioned three times, had a lifetime of bacterial infections, eye issues, depression, therapy etc. now he’s under the care of GP,CPN, endo ( well he’s seen them once...), and his GP throws medication at him when he attends at his surgery. he’s past the point of return and can’t even understand what NDT is - he’s also on PIP and was on ESA so another cost. i’m the one in our family who has done the research and leg work, and genetic testing and i’m very confident that treating him with ndt or t3 in his 30’s would have helped with a lot of this! sorry for the rant i’m just thinking out loud about the short term attitude of thyroid treatment and funding!

sorry to hear about your fertility issues too, i think that’s also more common than known!

x

[sazzle2680 in reply to london81]

I completely get what you are saying london81. I was ill for 5years after having been prescribed roaccutane for several months by a hospital consultant. They didn’t know what was wrong with me...I had a long list of all the conditions/diseases I was tested for and I didn’t have. Was discharged with no diagnosis and told to come back if I got any new symptoms. A month later my periods stopped. I was then diagnosed with Hashimotos. I was so worried that my periods stopping was going to affect my fertility but was told that it would all be fine and not to worry. The doctor was very wrong! I tried to conceive naturally for the next two years before finding out I had no eggs left. Similarly to your Dad...If it had been picked up years earlier, I may be in a completely different position now.

This is my personal view and from my own experience...the NHS is very good at treating the masses with the less complex issues. When an issue is complex people tend to end up being bounced around the system with no one really taking ownership. Its costly both to the individual concerned in terms of personal impact as well as to the NHS for all the pointless appointments repeating yourself over and over and still getting nowhere. Its people like yourself and myself who invest time and energy into working out for ourselves what’s wrong and what treatment is out there to help. We then stumble into issues of treatments not having sufficient UK based research studies to warrant approval/licensing in the UK or not fitting “criteria” to receive it even if it is approved/licensed. I’ve had to take things into my own hands and have been paying privately abroad for IVF and taking on huge debt as a consequence.

The NHS is not a perfect beast, it’s far from it, but I was glad it was there when my sister needed emergency spinal decompression surgery a couple months ago....and when one of my best friends dad needed palliative care last month for his final weeks of life. Their care is prioritised over my desire to try and have a family. It’s a bitter pill to swallow but I can see the rationale in the prioritisation decision.x

[Hillwoman in reply to sazzle2680]

Thanks for the inside view of this issue.

This is a minor point, but I was struck by your phrase, "the NHS is very good at treating the masses with the less complex issues". The incidence of hypothyroidism is increasing. It's a common disorder, but a complex one. One could say the same of type 2 diabetes, where there is much more attention given to individualising treatment. I'm not claiming the treatment of T2D is perfect by any means, but I do wonder why, given the sheer numbers affected, the same standards do not apply to hypothyroidism.

[Angelic69 in reply to sazzle2680]

All this sounds to me that those in powerful positions have gone out there way and profited from the creation of their products and in so doing have replenished our environmental and food stores with rubbish and junk that pollutes our bodies and minds, and for a lot of us resulted in thyroid disease. Thyroid disease puts us all at a great disadvantage via brain fog, fatigue, eye disease, chronic constipation, dry brittle hair, nails skin and many more issues. We can not compete with the fully functional anymore, we are no longer a threat to there welfare in this condition. Many of us have lost our voices due to incorrect medications which have left some of us with retardation. Do you think it would be counter productive and ridiculous for them to put us right by giving us restorative, function medications. Would we again find our voices and speak out for equality and good practice and shout out about those profiting from disease and oppression. In this state we are easy to bully and confuse and are not a threat why would they want to fix us.

[Angel_of_the_North]

The NHS would probably have a lot more money to spend on medications if it got rid of the CCGs and took out a whole layer of unnecessary admin and managers

[sazzle2680 in reply to Angel_of_the_North]

It would also save a lot of money if people used services appropriately, like their GPs rather than turning up in A&E....or if everyone turned up to their booked appointments, or called sufficiently in advance to cancel if they can’t make it.....or stopped asking for paracetamol/antihistamines/ibuprofen to be prescribed. It costs pence to buy over the counter and £35 for a pharmacy to dispense an NHS prescription before the actual cost of the drugs.

There is a huge reform underway in health and social care. CCGs will likely cease to exist in the next 2 years, however a lot of the functions a CCG performs will still need to be done. It’s not all bureaucracy and certainly not unnecessary. CCGs currently are there to make sure you have all of the statutory services in your area....there is GP for your postcode, an ambulance service, a hospital, a community nurse, a physio etc to look after you....and that the service they provide are of good quality (or work with the providers to improve it if it’s not).

[Polski in reply to sazzle2680]

Thank you for explaining the system. I've often wondered how it all worked.

If we all thought '£35' every time we walked into a pharmacist with one of those pieces of paper, we might all be a lot more careful!

[helvella in reply to sazzle2680]

£35 per prescription makes a nonsense of 28-day prescribing for long-term, stable conditions - such as my hypothyroidism.

As the medicine itself is of the order of £2, it seems crazy not to prescribe and dispense for a minimum period of three months.

[StitchFairy in reply to helvella]

On the other hand, if a pharmacy charges £35 to deal with a prescription, it's no wonder they kick up a fuss with surgeries for prescribing more than 28 days worth at a time!

[sazzle2680 in reply to StitchFairy]

Pharmacies are private independent businesses...so there could be something in that. There may also be dispensing guidelines that stipulate it...I’m not close enough to know for sure.

[sazzle2680 in reply to helvella]

Couldn’t agree with you more Helvella!

I’m not close enough to medicines management in my role to properly understand the reasoning behind it. I can only guess and speculate that it’s a combination of a blanket rule on all prescribing for safety reasons and potentially the cost associated with medicines waste...people stockpiling drugs they never end up using.

[StitchFairy in reply to sazzle2680]

I didn't think GPs were supposed to prescribe paracetamol or other over the counter pain relievers nowadays, so if patients are asking for them and getting them prescribed, then surely that's the GP at fault! As for antihistamines, there are some that are not available without a prescription.

[Angel_of_the_North in reply to sazzle2680]

Pfft! You can't even book an appt in advance at my GP, so useless for people who need to give notice of absence to work or who can't take a phone into work and keep phoning until there's a free appt. That's why people go to A&E instead. And all GP does most of the time is refer to hospital for tests and more tests, so why not just bypass GP? System worked better when GP surgeries more or less ran themselves before the Thatcher-era "quality controls". You could even get home visits then and knew who your GP was and they knew you. But many people will be too young to remember that. I suspect most of what CCGs do does not need to be done outside the surgery. All the services might exist in my post code - but you can't actually get them, and quality seems to mean box ticking, not effectiveness. Bah humbug. The reason why pharmacies really, really want to check your meds is because that's one of the few ways they can get more money (I used to do procedures training for xxx pharmacy). I pay enough tax to want a better service. I've delivered training to many govt depts and they all brainwash their staff into believing that the current way (or their way) is the only/best way. NHS might not be as bad as, say, DWP, but their IT has always been a disaster area (used to do NHS hospital IT audits - horrifying)

[sazzle2680 in reply to Angel_of_the_North]

I think we would all love for the NHS to be how it was back in the good old days...the problem now is that people are living longer with more complex conditions that previously would have ended their lives. A GP now looks after a list size which is humungous compared to back then. Things have had to change to compensate for that.

My previous GP surgery was terrible and I couldn’t get an appointment. I voted with my feet and reregistered at a different practice and they are excellent. It may be worth looking at NHS choices at the GP Surgeries in your area and finding somewhere new.

It’s a misconception that A&E will bypass the GP. They won’t. They’ll only treat urgent things. They’ll send you back to your GP to be seen for anything else. It would be a wasted trip...you’ll be waiting probably around 4 hours and cost your CCG £200+ for your attendance.

You suspect wrong about a surgery being able to do the CCG work because a CCG is actually a GP membership organisation - the CCG are employees of a group of GP practices....doing all the commissioning and contracting work on the practices behalf.

[Angelic69 in reply to sazzle2680]

I think we should ask why the NHS is allowing themselves to be charged £35. 00 for things that cost pence over the counter. To me surely this is evidence enough that proves without a doubt that it is ran by monkeys and not fit for purpose. If the managers can not get the same deal as me and you at the chemist give us the cash so we can get more. Isnt that obvious.

[sazzle2680 in reply to Angelic69]

Angelic69 - read my post properly. It’s the cost of the pharmacist to dispense. NOT the cost of the drug.

I find this offensive. I am no monkey.

[Angelic69 in reply to sazzle2680]

Please break down the £35.00. Are you saying each dispensed prescription is charged an additional fee of £35.00. so aspirin would cost the NHS £1.00 for patients and £35.00 for staff. And patients are getting the blame for the £1.00 spent. I was not aware you were management or a monkey.

[sazzle2680 in reply to Angelic69]

Yes Angelic69 - every time your GP issues you a green form the pharmacy charges £35 for the pharmacist to dispense a prescription. This is how pharmacies make money....costs them money to hire pharmacists and open a building...these things aren’t free funny enough.

The cost of the drug is then also on top of the green form.

[MichelleHarris]

I have been wondering about this as started on Levothyroxine last year and Endocrinologist says it caused me to have a Sjogrens flare. I recovered my health on NDT. Endo says he would have given me a combination of T3 & T4 now but by starting NDT he cant evidence it. I didnt ask him for T3 & T4. Surely I need NDT. And should get it on the NHS x

[silverfox7]

Strange to read that NDT is not well thought of when it stopped patients dying in 1892! I’ve read that kept going until the 1950’s when it was phased out but that makes a strange reading aswell as I was prescribed it on the NHS in 1980’s and despite what Big Pharma says and these important experts have to say I’ve gone back to taking it and my 5 month Anniversary will be soon upon us. So now I’m reading about various solutions and can only conclude that nothing much has changed over the years. Confused patients-yes, confused doctors -yes and discord-definitely! Lots of doctors don’t/can’t make the effort to learn but then moan and shuddered when we take charge and make things happen. Yet we can see them time and tune again but often come away confused and frustrated. I’ve often though if we can pick up the basics and get a good reasoning then why can’t our trained medics.

Makes me thankful time and time again for everything we learn on here and continue to learn whether giving the info or receiving it. It’s so sad the NHS can’t run a simple forum for the GP’s to ask and dare I say answer questions. I’m sure they would learn more and understand our frustrations if they did. Having a new treatment doesn’t mean it must be better but having one that works is a Godsend!

[Hidden]

It would seem then that because there is no established way of recharging the CCG for the cost of NDT, then it cannot be prescribed?

In that case why is there a note at the bottom of the sheet that the CCG seems to be relying on ( panmerseyapc.nhs.uk/media/1... ) to say that it IS possible to get an IFR for NDT??????

If the above allegation is true then surely it is not possible for any GP to prescribe anything that is not on the list of approved medicines and that IFR simply does not exist any more.