Patients will decide how they spend NHS money?

[Aurealis]

Article in The Times today.

Is this the end of the NHS or the beginning of thyroid patients getting a fairer deal. Does this mean we could buy our own T3 funded by NHS? Pay for private endo appointments on NHS.? NDT funded by NHS?

thetimes.co.uk/article/pati...

[Greybeard]

The Devil will be in the detail.

[Treepie]

Clearly meant for those with considerable healthcare needs, cannot see it applying to drug addicts!

[diogenes Remembering]

However, the doctor has the last word as to whether what the patient wants will be allowed. At all levels, that doesn't seem to bode well for thyroid treatment/diagnosis decisions givne the present lack of understanding.

[Hidden in reply to diogenes]

Agreed...

[shaws Administrator in reply to diogenes]

You are correct diogenes. The stop prescribing despite patient not 100%. That should the aim, i.e. relief of all clinical symptoms and not a 'range of TSH'.

[Hidden]

Some areas will get more funds than others 🤔. Wait and see approach here methinks 🤐

[shaws Administrator]

I think this is the end of the NHS. It is couched in 'nice and sympathetic' language to entice people into thinking that 'we' would be better managers of our health care. NOT if we are restricted to a certain sum each month or year.

What would happen if we develop a heart disease/cancer or other very serious illnesses.

As for sourcing our own T3 - it has shot up in price in the UK but again would it be restricted to an 'amount' each year - the equivalent of a year's supply of levothyroxine alone.

Medications and funding the NHS is obviously getting far more expensive as the cost of keeping us alive increases and we are also living longer (I hope). There is lots of wonderful new innovations in treating people who would have died a few years ago.

I believe that due to many progresses in treatments for lots of diseases and people living longer will also increases costs.

I don't think Governments have kept up the funding needed for research or of new methods of diagnosing/curing. Those who can afford private health care will be o.k. but for those unable to work due to their illnesses or disabilities????

[humanbean]

What I want to know is what happens if I spend so much that I run out of money six months through the year.

[Aurealis]

You all make very good points. Probably not good news then. Ah well, at least we have each other...

[helvella Administrator Thyroid UK]

Let us imagine you get funded £6708 to cover two 20 microgram liothyronine tablets a day for a year. Then let us think what issues could arise:

1) You need an increase to 60 micrograms a day. You can't afford it until the next year's funding comes through.

2) The suppliers double their prices. You can't afford it until the next year's funding comes through.

3) You buy from Germany and only pay about £250. Leaving £6458 for other healthcare.

4) You forgot to get funding for blood tests. Regardless of how under- or over-dosed you feel, you cannot get tested until the next year's funding comes through.

5) After a month, you are over-dosed so you reduce to one tablet a day and your funding also gets reduced proportionally. Next month, you realise you were wrong and have to apply for more funding to cover the increase.

I can see that a patient being allowed to say whether they prefer, say, a new wheelchair or enhanced physiotherapy might be sensible. (If, of course, the person cannot have both!)

[Aurealis in reply to helvella]

Yes I’m sure you’re right there, it’s a very risky path and inconsistent with cradle to grave healthcare principle of NHS.

On a personal level, I was thinking of the numerous TSH tests I have had over 25+ years, none of which have been useful in managing my thyroid condition. I’d dispense with them. It would have been useful also to have attended a hundred or so fewer GP appointments and seen a good endocrinologist sooner :).

Would have been cost saving overall.

[helvella Administrator Thyroid UK in reply to Aurealis]

Which makes sense as you put it. But how does anyone get from "just diagnosed" to understanding sufficiently to make appropriate decisions about such things?

I know the flippant answer, come to this forum, ask and read. Trouble is that takes a lot of time and effort and all too many people would find it difficult to the point of impossibility for a host of reasons.

[Aurealis in reply to helvella]

It’s a particular problem now with the GP situation. Probably those just diagnosed now will see their GP much less frequently than I have, and have fewer tests, money already saved, but patients left with all the problems

[userotc]

I agree with Shaws that the end of the NHS is nigh. However, as I've indicated in other recent posts, so what? It is faulty and unsustainable so why keep it in its present form - just because it's free? Most comments here confirm there's much detail to be resolved, but let's embrace it's (part) privatisation before the bit that's worth keeping ie acute-condition treatment/operations, becomes as tarnished as the rest eg diagnosis and disease prevention.

[humanbean in reply to userotc]

I want the NHS to continue. I don't want to become bankrupt and homeless just because I've become ill. I accept that the NHS is failing, but I want it repaired, not thrown away.

[userotc in reply to humanbean]

I fully agree with your wishes but sadly can't see it being repaired now after 70 years. Yes more money can be thrown at it but that's likely to just keep it doing the same as it's always done. If you think it is good in all areas including diagnosis and disease prevention, I'm afraid we will have to disagree. And, from what I regularly read on this forum, most others would also disagree. Hence my personal view is to keep the parts that work public and privatise the rest which continuously fails.

[humanbean in reply to userotc]

So, if we end up with a private system doctors will suddenly start believing patients who have thyroid problems and treat them adequately and compassionately? This isn't going to happen, whatever system we have. There are problems with thyroid treatment all over the world. So I'd still prefer to have a healthcare system that doesn't involve the risk of bankruptcy and homelessness.

[userotc in reply to humanbean]

No. In brief, the diagnosis and prevention role would mainly be done by private practitioners e.g. naturopaths, who have the experience and qualifications - theyve been doing it successfully for years and it works well (whereas it doesnt with doctors). Doctors would do the acute stuff that I mentioned before and is the successful part of the NHS. It's a combination of what works now in public and private healthcare.

That's the overview - this forum has insufficient space for detail & full solutions.

[Aurealis in reply to userotc]

Do you not think that a qualified doctor is best to diagnose and take a preventative role? Most doctors I’ve encountered are very good at this. There’s just a problem with thyroid training, treatment and testing.

[userotc in reply to Aurealis]

In brief, NO. The many messages I read on HU and several other forums for other conditions - plus extensive personal and friends/family experiences - brings me to that emphatic conclusion.

[shaws Administrator in reply to Aurealis]

Not one doctor or Specialist ever diagnosed me with hypothyroidism (private or NHS) but I did get prescriptions and even an operation for something I did not have. This was over several years.

I was discharged from the A&E after an overnight stay, running on treadmill etc discharged as 'probably viral with a high cholesterol'. Once upon a time a higher cholesterol was a red flag for hypothyroidism. Now they know none. On the same day I got a blood test form (through my own request which I had phoned for whilst I was away from home). I got my own blood test and two hours later GP phoned to say, 'who gave you a blood test form' I responded "I did". "Come and get a prescription you have hypothyroidism and TSH is 100".

I had never heard of hypothyroidism in my life and if someone had mentioned it it would have meant nothing at all. I assume that is also the case with most doctors/specialists. They know no clinical symptoms.

[humanbean in reply to userotc]

I still have a problem with what you've said. People with little or no money, for whatever reason, are going to die if they can't afford to see a doctor. That, to me, is a huge problem that can't be swept under the rug and ignored.

And if you say that people can get insurance, I suspect you have never had to worry about money, and don't understand the realities of life behind the word "poor".

[userotc in reply to humanbean]

I know you have a problem because you want free NHS even where it's flawed and I realise you're not alone. Personally I don't. The risk of death should reduce not increase. As explained, doctors continue with later treatment eg operations, whilst better qualified, more experienced and dedicated practitioners do diagnosis and prevention.

Re money, it could actually still be free eg from massive pharmaceutical cost reductions. As I said, details needed.

In practice, big pharma won't allow it and they control our healthcare system. So, using your terminology, it will be swept under the rug.

Irrespective, that's my view on correcting our health system. What is yours?

[humanbean in reply to userotc]

The risk of death should reduce not increase.

If people can't afford to see a doctor when they are seriously ill there will be more deaths, not fewer.

As explained, doctors continue with later treatment eg operations, whilst better qualified, more experienced and dedicated practitioners do diagnosis and prevention.

On the basis of that statement alone I think you're mad. I was operated on by a trainee surgeon many years ago and it ruined my life. I still suffer the consequences 45 years later.

Also, where are these competent doctors going to come from? The NHS is haemorrhaging doctors as it is, and as a result of Brexit more and more of the foreign ones are leaving the UK - and who can blame them? The same is true of nurses.

And despite my belief that many doctors aren't the nice, caring, competent people they like to be portrayed as, I still have some sympathy for them having their working life micro-managed by the NHS and the government. And I think this is being done deliberately to speed up the downfall of the NHS.

I agree that the way the NHS buys the things it needs whether that is a light bulb or paracetamol or antibiotics or a tube of cream for psoriasis, is absolutely appalling, and that as a nation we are getting ripped off. But the current government certainly doesn't care, because their whole plan appears to be to destroy the NHS as soon as possible, and to institute a fee-paying system.

[userotc in reply to humanbean]

I'm afraid you are missing the key points and so not understanding the plan eg roles of naturopaths and doctors. I won't repeat what I outlined earlier, particularly as you are getting abusive. Despite disagreeing with much of your responses due to your misunderstanding, I've not chosen to use words like mad.

I'm sure we all await your alternative solution!

[humanbean in reply to userotc]

I am afraid you are missing a key point too. You haven't explained how poor people will get medical help if they have to pay for it but can't afford it.

[userotc in reply to humanbean]

I have indicated one such scenario 1h ago but you've missed that too. And your healthcare solution is?

[shaws Administrator in reply to humanbean]

I do agree with you humanbean. We do know of so many members who have lost their livelihoods due to hypo and are not able to see 'any other experts' if there are any left as Dr S is deceased and Dr P unwell.

Many on this forum may now be unemployed or retired and not have the wherewithall to pay private, so suffer even more and what happens to those who don't even have an internet connection.

Oh! I forget about the poor woman who foretold of her own death, along with a letter for the coroner to notify him/her of her reason as she could not go on any longer after years of suffering with hypo and no improvement at all.

Also a large majority on the forum have to also source their own thyroid hormones in order to have some quality of life. So are saving the NHS £££s.

[userotc in reply to shaws]

It's interesting that every time someone new posts on HU they are advised to pay for private tests - an understandable acceptance of NHS failures. Yet when I propose healthcare is overhauled by doing something similar, it is strongly opposed! As I've indicated, if done correctly, it might still be free - at cost to big pharma. Strange.

[shaws Administrator in reply to userotc]

They have to have private tests as the NHS doctors wont do the ones we feel throw a bigger picture of why they still feel very ill.

Once we are well we don't need blood tests so often. I only get one yearly test now.

In fact, in the past, not one person ever had blood tests for thyroid hormones. We were diagnosed on symptoms alone and given NDT on a trial. No blood tests needed but the skill of doctors who were knowledgeable about clinical symptoms. Much less costly and no Big Pharma benefitting from blood tests, levo alone plus medications to control symptoms.

The majority also have to buy their own thyroid hormones in order to be well as it is refused on the NHS except levothyroxine.

We are forced to do this and it is shameful that it is of necessity.

I am not saying an overhaul of the NHS is not needed but not when someone is restricted in their care due to cost: who cannot take particular medications and are told that is all that will be prescribed - like it or lump it.

I'd like to know exactly how much Big Pharma receive for blood tests and for additional prescrips to control remaining clinical symptoms of patients who don't respond to levo. It seems like a rip-off by the cost of T3 itself - the reason it has been withdrawn without notice.

[userotc in reply to shaws]

I'm glad you're not disagreeing with my suggestion (which is for all healthcare not just thyroid which you refer to).

I suspect that, if I'd simply suggested alternative treatment eg via naturopaths, is included on the NHS, there'd be little or no opposition. In reality, it is that.

But, for it to work financially, big pharma would have to suffer so its not happening anyhow.

[shaws Administrator in reply to userotc]

Making profits is fine but not astronomical ones. For instance, talking about health, many source T3 elsewhere for very reasonable cost, except in the UK where we, at one time, had only one supplier who gradually increased cost beyond belief. (this wont be accurate but I think it was about £30 per month to over £600).

We were so excited that there were two other companies making T3 which were licenced and there was great excitement amongst patients that, at last, we'd be able to source alternative T3s and to our dismay, the price of all three was nearly identical. The result was a wonderful excuse to withdraw prescribing T3 whilst leaving many patients high and dry with no alternative T3 and only levothyroxine. What a disaster. The fact too that most doctors and endos believe that levothyroxine alone is perfect and if patients are still complaining the cause is due to 'something else'. They do not link the TSH with the Frees but only TSH and T4 and if they are in range, I, for one, would be in great distress.

[Sallybones]

personal funding already exists for some patients within the NHS. It was brought in several years ago but never got rolled out properly so a lot of people never knew about it. Our local health auuthority certainly didn't really want to implement it but I do know of 2 people who got it and still get it.

Personally I don't think it's the way to go and I don't think it's a workable project.

Hey ho my two penn'orth for what they're worth.

[Hidden]

I agree that this isn't a "workable project" how much additional cost would be involved in rolling this out, and increased claims from those who think they can "milk the system" ?

The principle behind the UK benefits system is that the contributions of the many in work, are used to support the cost of those in need, when they need it. We all know that longer life expectancy and increased healthcare costs are no longer being covered by these contributions, it's simple maths, a bucket with a big hole in it that needs plugging, a sticking plaster won't do the job!!!

Changing the way the funds are distributed isn't the answer. The management of the NHS needs a total overhaul, if it were private sector the directors would have been sacked years ago!

I was telling my counsellor about the T3 campaign, and difficulty obtaining it now because the NHS was paying a ridiculous high price for T3, when it can be purchased abroad for a fraction of the cost the NHS are paying. She said it was a well known problem throughout the NHS, they're even ripped off for the costs of simple drugs like paracetamol. I can't understand this at all, local authorities use procurement principles before they can sign off contracts, so why on earth isn't this "best practise" happening in the NHS? Those in charge of "buying" must surely be guilty of misuse of public funds?