About the Survey

I got invited to take part in a HU survey here today and I'd like to make a comment about it if I may... The questions betray a barely disguised desire designed it appears to test our responses to the idea of paying for NHS services. If so, I think it's an underhanded attempt.

[Hidden]

We already pay for the nhs through taxes

[Hidden]

Manage my own healthcare budget? you gotta be kidding!!! This sounds like more phony 'choice' aka the market and other Tory/Labour BS?

[Hidden]

reallyfedup123:

If this is indeed the case then why not state it outright? Worse still, it assumes that we all know what 'managing your own healthcare' really entails! Isn't the NHS f***** up enough already!

[Hidden in reply to Hidden]

Yes. What concerns me most is that this sort of 'hype" has been raised a few years back as well. So... May we ask who actually got their own pot of budget/a pot of cash replacing traditional GP AKA gatekeeper AKA the exact source of our stress and humiliation whilst we are still struggling along health-wise? This sort of research is really a waste of money unless there IS a concrete plan to create the health budget which I doubt there will be anyway.

[crimple]

I completed it but was extremely cynical. You will probably only be able to manage your own treatment budget if you don't ask for silly tests such as Ferritin, folate, VitD, B12 and Iron and especially not ask for T3 and T4!! Oh, nearly forgot and you must stay on levo and keep your TSH at suboptimal levels!!

[LouiseRoberts]

Can I make it clear that this is a survey being funded by Institute for Public Policy Research (IPPR) and implemented in partnership with HealthUnlocked.

It has no connection whatsoever with Thyroid UK, either in it's support group form (here on HU) or with Thyroid UK the charity...

Louise

x

[Hidden in reply to LouiseRoberts]

That's fine Louise, I'm not criticising Thyroid UK at all, or HU for that matter.

[LouiseRoberts in reply to Hidden]

phew!

I think maybe the bit of your query that got lost might have helped!

*sigh*

I have reported the new glitch...!

xxx

[Hidden in reply to LouiseRoberts]

What got lost?

[Fruitandnutcase in reply to LouiseRoberts]

I noticed the same problem with someone else's post yesterday. I think it did it with one of mine too but when I couldn't see what I had written I redid it.

[Hidden in reply to Hidden]

IPPR have passed a poorly worded survey through to HU. If those budgetary questions weren't about paying for one's own care, then they could've been rather more clearly worded. And the survey was aimed at people who spend quite a lot of time in hospital. Which I'm guessing the majority of thyroidys don't? So one wonders what their agenda is.

[Hidden in reply to Hidden]

As I said above, I think it's designed to ascertain how we would react to paying for NHS services under the guise of 'choice'. I don't think it has anything to do with either thyroid or heart conditions. Elsewhere, somebody pointed out that IPPR is a Labour Party 'think tank', thus this survey is clearly a politically motivated one and not particularly good one at that.

[Hidden]

It's as I suspected from the nature of the questions. How on earth is an individual to figure out what is the 'best treatment? I suspect that there's another outsourcing contract at the end of this particular capitalist rainbow.

[Hidden]

PS:It asks for to add tags but there's nowhere to actually input them

[lola1956]

That's what I done ..tell them we want to try other meds not just thyroxine

[Clutter]

I informed the CMO of HU that I took issue slightly with the question about how many GP and clinical visits I had which was followed by how could I self manage my condition better and make fewer clinical appts. With the exception of one GP visit, all my GP and endo appts have been at the clinicians request to discuss meds and blood tests.

I suggested (on the survey) titrating my dose according to symptoms and requesting blood tests to monitor TFT and vitamins would cut out GP appts. Discussion of meds/results, if required, could be by phone. It's GP who wants face to face, not me.

[crimple in reply to Clutter]

I said something similar re vitamin tests etc just about to pay for some tests privately

[Hidden in reply to Clutter]

These communication can be done over email too. GP's work isn't anything high level (they know nothing anyway) - qualified nurses can do if they wanted to cut the costs /reduce pressures to hire more GPs.

[Taffhamster]

I said I rarely make any visits to my GP practice because I've pretty much lost faith in them. But I agree with Clutter – most of the time when I go in, it's because they've asked to see me, and they'll pretty much hold any test results to "ransom" until I agree to an appointment. I asked to be sent mine so I could go through them and run them past the forum before seeing the GP, but was told I couldn't have access to them until after I'd seen the GP – they did eventually relent when I kicked up a fuss, but that suggests their policy is arbitrary and not that their hands are tied by strict rules. Needless to say, that entire appointment was a waste of time – spent with the GP fixating on a rise in my cholesterol (which I'd only had tested at her insistence), and refusing to discuss the results I wanted to talk about.

I did try to make some constructive comments on the survey about how treatment might be improved, however – largely involving doctors listening to their patients.

[Hidden in reply to Taffhamster]

Fixating on your cholesterol? OF COURSE. They/GPs had become pharmaceutical representatives to push drugs to patients which are toxic.

[Taffhamster in reply to Hidden]

Sad but true. She wanted to put me on statins. I said no. Then she said I could try to reduce my cholesterol (not a concern of mine – see Kendrick et al) by changing my diet. It later occurred to me that we hadn't even discussed my current diet, so she'd just made assumptions about my eating habits because I'm overweight. When I got home, it took me all of 10 minutes of Googling to find links between low Vitamin D (which she wasn't bothered about, even though my score was just 3 points above "significant insufficiency") and raised cholesterol, and also hypo and raised cholesterol. But no, they'd rather have everyone on statins because it ticks the little boxes that earn them money, and the situation will only get worse as the threshold for cholesterol is lowered for no good reason, and people who trust their GPs go along with their advice.

I know that sounds negative, but what scared me was how casual she was about prescribing statins. I can't say for sure that we wouldn't have had a discussion about the possible side effects had I agreed to try them, but given that I was already there complaining about brain fog and aching muscles, I'm guessing she wasn't too au fait with those!

[Angel_of_the_North]

But I'd be quite happy if the NHS gave me money directly to buy my T3, blood tests (and alternative therapies) instead of having to use my own money - then I wouldn't see the GP at all. If it would pay for my biohrt and private doc, I'd be ecstatic (and much richer).

[HarryE in reply to Angel_of_the_North]

Me too! Maybe we could earn credits too, for healthy diet, excercise etc? Because of course, if we were self medicating, we would be well enough to achieve those things

[Hidden in reply to Angel_of_the_North]

I feel the same. I already pay private health this and that..for the sheer uselessness of GPs: wish I could get some money back from NHS which are supposed to provide some of that, at least.

[normajean643]

I only had one question on the front page & the survey for me was over so---- I don't know what the rest of it was & why I only had the first question to answer.

[Hidden]

I completed the survey. I would be quite happy to manage my own healthcare budget should the need arise as I would then be in control of the services I felt I needed and who knows may be able to barter to reduce cost. To be frank, many healthcare professionals such as nursing staff have less knowledge than me on many health issues. The survey asked whether I would be willing to accept advice from different staff and I would not. Others would - we are all different but unfortunately the NHS brings everything down to the lowest denominator. I think the more that is done for people to take control of their own health the better. In other countries one collects X Rays, reports etc etc. the NHS is too paternalistic for me and I would hope this eventually shifts. I am after all a taxpayer paying for the service.

[Hidden]

Yes - I agree completely. I answered every one of those budgetary questions with 'I am on a low income and cannot afford this'.

[Reykua]

With the move to cut public spending as much as possible. It is inconceivable to me that any government would want to provide individual budgets to patients with long term health conditions that would give them financial access to services and medications that are more expensive than the ones they currently receive through their GP's without the individual being forced to put their hands into their own pockets.

Of course, I'm extremely cynical and I think rightly so. Having received training in the introduction of Personal Budgets for elderly people requiring care in their homes, I have to say that it has been a real struggle for many of them, (as well as their loved ones) to ensure they receive the quantity and quality of care they require without maxing out their budgets.

I'm really concerned that many less able and confident people with long term health conditions will struggle to manage individual budgets and may find themselves substantially worse off financially, emotionally, mentally and possibly physically. There could be quite serious implications to this suggestion for many - especially if, like the current welfare benefits discussion, they decide to cap the budgets at any time.