What case for change?

"I am a passionate supporter of our NHS, and that is why I understand the passionate debate it arouses. It is also why I resent those Opposition Members who seek to misrepresent the NHS, its current achievements and its future needs"

- Andrew Lansley, Wednesday 28 February 2012

"For example, if our cancer survival rates were at the European average, we know we would save 5,000 extra lives a year"

- Andrew Lansley, Wednesday 1 June 2011

"The cost of new medicines alone, for example, has been rising by nearly £600m a year"

- Andrew Lansley, Sunday 10 April 2011

Sooooo, my dual approach of tweeting and emailing has paid dividends. Well, to be more accurate the countless tweets have so far yielded nothing (thanks very much to those who re-tweeted, by the way), but a couple of emails to healthandsocialcarebill@dh.gsi.gov.uk resulted in a response after eight days (not too shabby at all).

Highlights of the response I received are below:

"Many thanks for your emails dated 20 and 27 February in which you asked to be provided with the sources for two lines from the Overview of the Bill factsheet, published on the Department of Health website
Saving 5,000 additional cancer patients’ lives each year by bringing England in line with the European average is based on the analysis of number of deaths that could have been avoided if England’s five-year survival rates matched the average European five-year survival rates
Further information about the study can be found on page 33 of Improving Outcomes: A Strategy for Cancer- First Annual Report 2011 on the Department's website at 
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_131690"

And yes, you guessed it, bottom of page 33 of that document says:

Abdel-Rahman et al, What if cancer survival in Britain were the same as in Europe: how many deaths are avoidable?, Br J Cancer. 2009 Dec 3; 101 Suppl 2:S115-24 www.ncbi.nlm.nih.gov/pubmed/19956155

I've since replied with the below:

"Thanks very much for your reply.

I'm incredibly interested as to why the 5,000 deaths figure is still being used, based on Abdul-Rahman et al's study, despite it being comprehensively discredited:

http://www.guardian.co.uk/commentisfree/2011/apr/16/bad-science-goldacre-nhs-statistics 

Please can you clarify whether you disagree with Dr Goldacre's analysis, and why it is deemed appropriate to continue using the figure a year on, as if it were an accurate, contemporary 'fact' (note the use of the phrase "we would save", rather than "a study based on data no later than the year 1999 estimated that")"

So far, so predictable. However, that was only one half of the response that I received. When I emailed on the 27th of February, I also requested the source for the claim that the cost of medicines is rising by over £600m per year. Here's that part of the response:

"The estimate of £600m is based on the average growth in total drugs expenditure over ten years. The table below shows the total NHS drugs expenditure from 2000-01 to 2009-10 and draws on information contained in the Department of Health Annual Accounts, Financial Returns, and Foundation Trust year-end accounts during that period. 

 

My reply concerning this was:

"And on the cost of medicines, please can you provide the relevant links to the information that forms the basis of that table. Apologies, but I can't find it in here:

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_130154.pdf"

Right, now for the interesting (ahem) bit... let's have a closer look at that table above.

Well, it covers the first 10 years of the 21st century. And it states that the cost of medicine in 2000/01 was £6,690m. Now, if as has been claimed by Factsheet A1 the cost of medicines is growing by over £600m per year, then the cost of medicines in 2009/10 must be at the very least more than £12,090m (£6,690m + 9 x £600m)... agreed? (embarrassingly I had that initially as 10 x £600m, but hopefully now have it right)

Hmmm, how strange. The bottom line of the table states that the cost of medicine in 2009/10 was £11,920m. That's more than £170m less than the absolute minimum figure necessary for the 'fact' to be correct.

So it's wrong. The 'fact' on Factsheet A1 is simply incorrect. Now, anyone who read my previous post on this (my wife, possibly rightly, thinks I'm getting obsessed, but there is a reason for my persistence... I'll get on to that at the end of this post) will know that not only does the £600m per year 'fact' get an airing on Factsheet A1 ('Overview of the Bill'), it also makes a repeat appearance on Factsheet A2 ('Case for change') in a slightly different guise. Such is the importance placed on this 'fact'!

Factsheet A2 states that the cost of medicine has been growing on average by nearly £600m a year. 'Nearly' is nice and vague... I might have to concede that 'nearly' in the context of the figures involved could cover a shortfall in excess of £170m.

But now I'm wondering why the last 10 years has been included, and why go for the average over that decade?

Let's have a look at that table again...

From 2001/02 to 2004/05 inclusive, the annual cost of medicine did rise by over £600m - the highest rise was in 2003/04, when medicines cost £916m more than in 2002/03. In 2005/06, there is what looks like an anomaly... possibly a data error, but also possibly down to an external factor? I don't know, and I await the raw data so I can dig into it, but according to the data supplied, the cost of medicine in 2005/06 was only £28m higher than the cost of medicine in 2004/05.

Now, here's the crucial bit. From 2006/07 to 2009/10 inclusive, the annual cost of medicine rose by less than £600m - the highest rise was in 2006/07 (the year after the likely data anomaly), when medicines cost £563m more than in 2005/06.

Furthermore, the percentage year on year increase in the cost of medicine is consistently lower in the most recent years.

And if you take 2004/05 as the starting point, rather than 2000/01, the average annual increase in the cost of medicine suddenly becomes £390m - bit of a difference from £600m, right? And the £390m is using the most recent five years of available data.



Now, to try and explain why I keep banging on and on about all this... it's because these are the 'facts' being repeatedly used to justify a monumental shake-up to the NHS. Of all the things that could have been chosen, these are what the Government view as the best possible justifications.

A study of cancer patients from the last century, which pre-dates the NHS Cancer Plan, isn't a compelling case for change. Nor is the rising cost of medicine, which is rising consistently lower in recent years than it was.

Please don't accept these 'facts' as justification for the Health and Social Care Bill. They're both incorrect and misleading.

If you want to learn about the performance of the NHS, take a look at this. Highlights include:

- Levels of public confidence and satisfaction in the NHS higher than any other country studied
- UK has one of the least expensive health systems among countries studied

And please don't be fooled into thinking that dismissing the Government's flimsy and erroneous case for change is akin to saying that the NHS is perfect and never needs to improve or adapt.

What worries me most is that if we're being misled about the reasons for the Health and Social Care Bill being introduced, what does that say about the actual content of the Bill and how it will be implemented? For me, it's like cowboy builders turning up at your house and telling you that your roof needs urgent repairs. If you get someone else to go up on your roof, see that the type of work they claimed needed doing so urgently is actually a con job, then how confident would you be in letting them go ahead and do the work? Do you think they'd do a good job?

Chris



P.S. If I've stuffed up any of the medicine cost analysis, I do apologise, and would be more than happy to correct.

P.P.S. Quick final one for nostalgia's sake - anyone remember "Someone in this country is twice as likely to die from a heart attack as someone in France"? Compare and contrast that often quoted justification for changes to the NHS with this from the Information Centre today...

The NHS IC‏ @NHSIC

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Heart attack patients: emergency admissions drop while death rate nearly halves in a decade:tinyurl.com/7nzl7yl

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Wordle - what do my first 12 blog posts look like?

With a whole 12 blog posts to my name, I thought I'd take a look at what words I've used the most...

Mostly as expected ('NHS', 'Health', 'data', and 'facts'), but some surprises in there ('just', 'time', 'people', and 'now').

Chris

Who's afraid of the big, bad risk register?

I'm getting towards the age now where I can start saying that things have changed since my day. Well, let me tell you, risk registers have most definitely changed since my day. In fact, they've changed since last week as far as I can see. And their transformation has been rapid, profound, and unexpected.

A risk register used to be a run of the mill project management tool. You'd identify the risks to your project, describe them, and then assign attributes to the risk - for instance, how likely is it to occur? What would be the impact if it did occur? Who's going to take ownership of the risk? What mitigating actions is the risk owner (and others) going to take to (ideally) eliminate the risk, or reduce its likelihood and/or impact?

Sensible type stuff, right? Nothing too scary. Of course in practice the quality of a risk register can vary significantly. Some of that variance is down to what sort of project it is and what sort of project manager is in charge of it. Some of it is just down to human nature - countless projects will kick off with the best intentions, initiate the full range of approved project management tools, review the risk register once and then rarely, if ever, look at it or update it again (they'll also often be poorly formatted without the requisite level of Microsoft Excel love and pastel shading, but that might say more about me than about risk registers...).

Now that's what I understand a risk register to be. Imagine my escalating surprise over the last few days as it has morphed into a necromantical nightmare, which cannot be released for fear of melting the feeble brains of us poor plebs.

Bit of background and context - on Monday 30 January 2012 early day motion 2659 was tabled in Parliament. The motion stated:

That this House expects the Government to respect the ruling by the Information Commissioner and to publish the risk register associated with the Health and Social Care Bill reforms in advance of Report Stage in the House of Lords in order to ensure that it informs that debate.

In November 2011, the Information Commissioner had ruled that "the public interest in maintaining the exemption (the exemption being 'formulation of government policy') does not outweigh the public interest in disclosure". The Commissioner therefore required that the Department of Health release the risk register that related to the Health and Social Care Bill.

The original request made for the release of the risk register was in November 2010 - the wheels, they do turn slowly!

The subsequent debate following the early day motion happened yesterday, Wednesday 22 February 2012. In my humble opinion, and with all due respect to the honourable members, none of the major parties covered themselves in glory during this debate.

We have this gem from Julian Smith MP - "Why is the right hon. Gentleman (Andy Burnham MP) such a scaremongering buffoon?"

The Deputy Speaker even felt compelled to interject - "this is easily and by some margin the worst-tempered debate that I have chaired".

The transcript of the debate is very long, but do pick out your own highlights if you get the chance. For me, it basically boiled down to quite a lot of going off the topic of the debate, so that opposing sides could make their points about why the Health and Social Care Bill is a good or a bad thing. And also quite a lot of Labour accusing the Government of hiding something that should be released, and the Government accusing Labour of hypocrisy.

Here's Andrew Lansley MP - "Frankly this is a broken bat debate...because the shadow Secretary of State (Andy Burnham MP) is trying to suggest that this Government should do something that he as a Minister and then as Secretary of State steadfastly refused to do".

Frankly Andrew, I don't care. It's totally irrelevant what previous governments have or haven't done. The fact is that the request for a specific risk register has been made now, and the request has been upheld and endorsed by the Information Commissioner. And besides, why not take this opportunity to be better than previous governments? You remember, the whole most open and transparent government in history thing.

Chris Skidmore MP threatened to inject some much needed sanity into proceedings - "Members have talked today about the risk register in apocalyptic terms, as though it were a document that should remain within the confines of MI5 or MI6". Sadly he then went on to say - "The risk register that would be released is that from the time of the White Paper, before the changes were made and before the listening exercise... If the document was released, it would be out of date, inaccurate and would scaremonger among the population".

In a superb heads I win, tails you lose manoeuvre, Mr Skidmore concluded - "The Government do not have to publish the updated registers on the basis of the Information Commissioner's verdict, which was on the autumn 2010 register... The Opposition are asking for an out-of-date document. We might as well give up and go home".

Oh would you? Please. Politicians giving up and going home... what's the worse that could happen? Maybe I should start a risk register...

So Mr Skidmore, who seemed visibly delighted with his reasoning, is simultaneously saying that the risk register isn't scary but its release would scaremonger the population, and that the Government shouldn't release an out of date risk register, but won't release the most recent version. Got that? Good.

Mr Skidmore, on fire by this point, had more to offer - "We are debating whether we should release a register that is no longer relevant and that was written in autumn 2010, at the time of the request on 29 November. The topic is completely irrelevant, as the debate has moved on. We have wasted six hours of parliamentary time today discussing an out-of-date risk register".

Chris (good name, by the way) - I've got a really good idea. Why not just release the risk register and not waste any more time? Oh, and just to point out, it's taken this long from the original request because the Department of Health and the Government have fought its release every step of the way.

Ok, that's more than enough from the debate itself. As I say, the transcript goes on and on and on, so feel free to read it for yourselves.

The final quotes in this post must go to Simon Burns MP (or #SimonBurns4SOS to give him his full title - follow Andy Cowper on Twitter, @HPIAndyCowper, for more). Here's a blog by Mr Burns posted just before yesterday's debate began.

Mr Burns says that risk registers are where civil servants "contemplate the most extreme circumstances of any major government project. They think the unthinkable to ensure that the unthinkable never happens... The consequence of this is a paper trail which details some of the most outlandish and extreme possibilities that civil servants have contemplated".

I'm sorry, what? No seriously, what? That's not a description of a risk register, that's a description of a think the unthinkable register - which incidentally doesn't exist as a thing, and is a trite contradiction anyway. Or it could be a description of an outlandish and extreme register - which again doesn't exist as a thing, and would be somewhat pointless to introduce as a new project management tool.

This is pure fantasy. It's trying to persuade us that senior civil servants sat down and detailed the most extreme and unlikely things possible to do with the Health and Social Care Bill. Right, so guys, risk number one... anyone? Here's one, aliens come down and snatch Andrew Lansley's body... ok, good, now we're cooking with gas... but hang on, is that a risk or an opportunity? Hmmm, good point. Ok, well there's that Mayan prophecy about the year 2012. Oh yeah! And there's that film that backs it up. Stick it down!

Civil servants haven't thought the unthinkable on the risk register (just to note once again, that is a truly rubbish, oxymoronic phrase). Nor have they detailed the most outlandish and extreme things possible. All they've done is document what they see as the risks associated with the Health and Social Bill. Nothing more, nothing less.

Now, to end, here's a quick Q&A:

Q: Will releasing the autumn 2010 risk register associated with the Health and Social Care Bill scare the general population?

A: No, although it would be good if the media didn't try to sensationalise anything that was within it. Risk registers are what they say on the tin - they register risks that might occur, and it is a positive and responsible thing to try to document those risks.

Q. Would releasing the autumn 2010 risk register associated with the Health and Social Care Bill now be pointless?

A. No. Things may have moved on, but it should provide an accurate picture of what were the perceived risks at that time. Again, we might need the media to be responsible and recognise that.

Q. Should the Government release the autumn 2010 risk register associated with the Health and Social Care Bill?

A. Yes. They have been instructed to do so by the Information Commissioner. If they wish to also release an up-to-date register to show how things have changed and moved on, no-one is going to stop them.

Q. Should politicians pack up and all go home?

A. ...

You see, it's quite a bit about trust and faith for me. My trust and faith on things to do with the Health and Social Care Bill has long since been used up (mmmm, brains). So the Government might think that they're being smart fighting tooth and nail not to release the risk register, but actually, all it makes me think is wow, its contents must be really, really bad or it must be a really, really shoddy piece of work (or both) for them to kick up such a fuss.

Now you tell me, does that help nurture an informed and productive debate about the major changes to the NHS that are on the horizon?

Chris



P.S. I've stayed pretty focused throughout this post for a change, so here's the wandering off that you've been waiting for... and it is worth waiting for.

Here's Gareth Johnson MP during yesterday's debate - "The BMA (British Medical Association) opposed the very creation of the national health service, so we should take no lessons from such organisations".

Nice one, Gazza. Do you happen to remember who else opposed the creation of the NHS? Yes, that's right. The Conservative Party. We should take no lessons from such an organisation.

P.P.S. I can't believe I forgot to say what the outcome of yesterday's vote was! 246 MPs voted in favour of releasing the risk register, but 299 voted against. So by a majority of 53, the risk register stays safely under lock and key, and every day life can continue. You can rest easy... for now at least.

How do you kill a zombie statistic?

Zombies, eh. They're all the rage. But there does at least seem to be pretty widespread consensus on how to kill them. Don't aim for the heart, you fool! As anyone who has played first person shooters knows, it's all about head shots.

Sadly, zombie statistics also seem to be all the rage. And I have absolutely no idea how to go about killing them. Oh, and if anyone thinks that zombie statistics aren't dangerous, think again! They'll eat your brain if you let them. And often, you won't even realise that they're doing it.

It's either a testament to my tedium or their resilience that I am going to write a fourth (count them - one, two, three and now number four!) blog post that includes the line "5,000 lives a year from cancer".

To borrow the terminology of the day, courtesy of The Walking Dead (you know, the one with the man-child Egg from This Life playing the husband of the wooden Dr Sara Tancredi from Prison Break), the cancer deaths 'walker' is still very much with us.

But first, a bit of wider context. Just this morning, BBC news tweeted the below:

BBC Radio 5 live poll suggests 80% of people in England don't think government's done enough to explain NHS changes http://bbc.in/xMspjN

First of all, I'm delighted to see the word 'changes' being used, rather than the usual 'reforms' or 'overhaul'. Orwellian language, innit. You reform or overhaul something because it's either plain bad or you're patently making it better. We are years away from knowing whether these changes will make anything better (and that's if we will ever know... don't laugh, it certainly wouldn't be the first time that the NHS train set had been played with by the Fat Controller of the day without any way of knowing whether it made things better or worse). For now they are just changes. Secondly, four out of five people - wow, that's a lot. The Government seem to be in a bit of a pickle, but is it fair to say that the Government hasn't done enough explaining?

Well, let's see. Yesterday we had the rapidly convened 'summit' meeting of... er, well, anyone who hasn't rocked the boat thus far really. Here is a relevant, ahem, infographic / data visualisation. And just to be crystal clear, this is definitely not what happened during the hour long meeting at Number 10. However, this did happen to the Secretary of State for Health on his way to the meeting.

So not such a good start to the week... ah well, can't win 'em all. And looky over here! What do people want? An explanation of the Health and Social Care Bill. Well, well, well, all ye doubters, look what the Department of Health bestowed upon us just last Friday - Health and Social Care Bill explained. You see, they are listening!

Not only are they listening, they've also produced fact sheets to help explain. Sheets... full of facts! Facts are good. Facts will reassure us. We love facts! Go to work on a fact. Get on your fact. We want facts, and we won't wait. In facts we trust. Keep facts and carry on.

Any Bill that requires 19 separate fact sheets has to probably have some sort of question mark hanging over it, but let's gloss over that for the moment.

Bring on the lovely facts on those lovely sheets!

First up - Factsheet 1. Nice one, just the one page. Maybe I am being unfair having a little moan about there being 19 of them. Short and no doubt sweet. Well, short anyway. On this first sheet of facts, there are in fact only two discernible 'facts' (quotes required, trust me).

The first 'fact' is that the cost of medicines is growing by over £600m per year (for information, over here are 10 facts on the cost of medicines, giving some very interesting comparisons and context). To date, and despite the lack of a primary source to check the figure against, I've just kind of accepted it when I've heard it in a kinda yeah, sounds about right, bound to be getting more expensive, grrr big pharma type way. But actually, I have no idea if it is right. SOURCE PLEASE! And I don't mean ketchup (although I do love ketchup). And this seems to cast a bit of doubt on it straight away. So is it the 'cost of medicines' or the 'cost of advances in treatments and medicines' that is growing by 'over £600m per year' or 'around £600m... every year'? COUGH UP THE SOURCE AND WE'LL CHECK IT!

The second 'fact' is our infamous walker. Somebody please aim for the head and take it down once and for all. Here are the immortal words: 'If we had cancer survival rates at the average in in Europe, we would save 5,000 lives a year'. I really don't need to say any more. This post is littered with links thoroughly debunking that claim. And the debunking started about a year ago!! And the problem now is that, faced with a Government that is happy to keep peddling a 'fact' that was outed as dodgy as Free Piece Sweet, I simply don't trust the other 'facts' that are being used in relation to the Health and Social Care Bill. Unfair? I don't think so. They've been Goldacre'd. They must know they've been Goldacre'd. And yet, they keep peddling and carry on. What they should do is apologise, of course. But that's about as unlikely as a politician answering a straight question with a yes or no answer. Failing an apology, they should at the very least stop peddling it. But they haven't. They have therefore lost my trust, and I am now skeptical of their other 'facts'.

Sooo, to sum up Factsheet 1. Until a source is supplied regarding the year on year increase in the cost of medicines, it does not contain any actual facts. That is a pretty special achievement for a fact sheet. Take a bow, Factsheet 1.

Skimming through what I have written so far, I realise that if I go through all 19 fact sheets, this post is going to get longer than either I want to write or you want to read. So let's stop at two.

Second up, and finally (for the time being at least) - Factsheet 2. This is entitled 'The case for change', so big, important stuff must be on it. It's another one pager - absolutely nothing wrong with brevity (note to self). And it opens up with a quote from Paul Corrigan.

Read it for yourself and make your own mind up, but to me it's a bit of an odd, obscure quote to choose. Don't get me wrong, Paul's often very quotable, and I often quote him, but it's just that this particular quote isn't the kind of punchy, hit you between the eyes, this is why we need this Health and Social Care Bill in a nutshell quote that you'd think the Government would be looking for. And don't forget, they could have chosen any quote from anyone over the last year and a half. Paul also happens to write a very interesting, very good, very regular (note to self) blog. I would strongly encourage you to read some of his posts, because he isn't always... how can I put this... hmmmm, the case for change for this particular Health and Social Care Bill personified. Paul is now aware that he has been quoted on the second sheet of facts, and will be responding on his blog tomorrow (Wednesday 22 February). I have absolutely no inkling what he might say (he might be both delighted and flattered), but I shall certainly be reading his response!

So on to the 'facts' on Factsheet 2. Well, we've got the cost of medicines. Again. Let's move on. Actually, hold on, more doubt cast! Factsheet 2 doesn't even agree with Factsheet 1. Engage pedantry, level 3.

'The cost of medicines is growing by over £600m per year' - Factsheet 1

'The cost of medicines has been growing on average by nearly £600 million a year' - Factsheet 2

Small beer? Yeah, probably. But I'm not filled with confidence in a suite of fact sheets that aren't even consistent between themselves.

The next 'fact' we have is another one that I've never thought to query before now. On the same basis again, that it sounds plausible, but I'm in full on skeptic mode now. Obesity costs the NHS £4bn per year, and will cost £6.3bn per year within the next four years. SOURCE PLEASE! Seriously, it is so, so, so, so easy to include the source. Just a little superscript number, and a list at the bottom of the page. Here's an article about obesity, which talks about £1.9-£2bn per year medical costs being added by 2030, and £5.5bn being added by 2050. But certainly no reference to £2.3bn being added by 2015/16. Here's the Department of Health quoting the £4.2bn per year figure, but again, no mention of it being £6.3bn within four years. Also, please do note the Department describing the £4.2bn figure as an estimate! COUGH UP THE SOURCE AND WE'LL CHECK IT!

The final 'fact' I'll look at is from a 2011 Royal College of Surgeons report. Of course, Factsheet 2 doesn't include a link to the source, but I will. It's here. It's a very interesting report with some very practical recommendations, but seriously, I can find no concrete reference for the 'thousands of lives could be saved if  patients had better access to facilities such as x-rays, scanners and operating rooms, and better post-operative care'. If I've missed it, apologies. And I would be delighted if someone could enlighten me. But I want a specific reference to thousands of lives being saved, remember.

Right, so as per usual, this post is both longer and less focused than it should be. The title suggests that it should be just about the cancer deaths myth being wielded out again (somewhat deliciously, our PM just yesterday said it's time to do some myth busting - lock and load, C-man. Aim for the head! Take that walker down), but I've wandered off, around and all over the shop.

My excuse - there's a lot going on with the Health and Social Care Bill right now. And a lot of what's going on ain't good. All I ask as a starting point is to play fair and straight with facts and figures. Some NHS statistics are very complex and can be employed by both sides in an argument - waiting lists are a classic example. See here. But making up 'facts' to justify huge changes to the NHS is just not on.

I would end by saying, now where's my double barrelled shotgun, but that might get me into Robin Hood airport type trouble.

Chris