The Scottish Census of Health and Wellbeing: inept and possibly unethical

There’s some controversy in Scotland about a census of ‘health and well-being’ that’s being asked of schoolchildren of different ages.   This questionnaire seems to have been put together by a committee, all of whom wanted their particular issues to be included and addressed.  It’s  one of the worst designed questionnaires I’ve seen in years.

The area that’s attracted most concern relates to questions about children’s experience of sex. I found a copy of the census questionnaire from a local authority website, and was taken aback not just by the most controversial questions, but by the whole exercise.  I have no particular expertise relating to children’s health, but I taught research methods for more than 25 years, and this is not the way to do things.

First question: why is this a census?  Censuses are intended to give a comprehensive, precise count of issues.  There are well-known problems in doing this, because systematic non-response leads to systematic biases in the results.  Several local authorities have opted out, and many pupils will. The count will be meaningless.  What matters – the same as any other quantitative questionnaire – will be the relationship between answers: for example, whether there is a relationship between educational experience and negative body images.  We do not need a census to do this. It can be done at least as well, and probably better, by a series of smaller-scale social surveys.

Second question: in what circumstances does it make sense  to put together a questionnaire that is this long?   There are 61 questions, but because there are sub-questions,  pupils are actually being asked to answer, by my count,  126 distinct questions.  The rubric claims that the questionnaire should be completed in 20 to 40 minutes. To do this in 40 minutes a pupil could have to answer one question every 20 seconds.  Even if the questions weren’t sometimes difficult, this is wildly unrealistic, and it raises questions as to how valid the exercise can be: the exhausted respondents will skip, fabricate answers to finish or simply give up.

Third question: has the questionnaire been piloted and validated? There are indications it might not have been: the length of the questionnaire, the complexity of the language used, and the validity of responses to deeply personal questions.  Pupils are supposed to know what ‘intimate touching’ means (q 49) and whether an experience amounts to ‘penetrative vaginal sex’ (qs 50 and 51).

Fourth question: what measures have been taken to protect vulnerable respondents?   Some children will be distressed by the questions.  Some of that distress is predictable – for example, from those who have been subjected to sexual abuse.  Every school administering a questionnaire should have someone with specialised competence standing by to offer support in the event of distress – and that cannot be the teacher tasked with supervising children using computers, because it would not be possible for that teacher to break off for a distressed pupil before the questionnaire is complete. The FAQs issued by the Scottish Government say this:

What happens if a child or young person needs help, or wants to discuss something, after taking part in the Census?  At the beginning and end of the questionnaire, children and young people will be informed that if any of the Census questions have made them think of any problems, or has raised any issues they are having, then they are advised to speak to someone in relation to the information they have provided in the Census.  For example, if pupils are having problems with other pupils (e.g. feeling that they are being bullied), they are advised to talk about this with their parents / carers / teacher / support worker, etc.

That is not good enough.  This project should not have passed ethical review.

So, you may reasonably ask, what should the government have done instead?  That’s easy enough to answer:  a series of much smaller questionnaires, based on proper samples, administered by people with a competence in the field, and supported by people capable of responding to any distress.  It should include a proportion of open, qualitative questions. Good social research starts with listening.

No jab, no job: a case for compulsory vaccination

I have been puzzled by the insistence of politicians and journalists that no-one should feel compelled to be vaccinated.

The place to start, perhaps, might be John Stuart Mill’s classic, On Liberty.

The object of this Essay is to assert one very simple principle … That the only purpose for which power can rightfully be exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. … The only part of the conduct of any one, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute.

The people who are arguing against compulsory vaccinations have focused on the sentence in the middle: that we should not do things to people just because it is good for them.  Fair enough – but that is not what is being proposed.  The principle behind the slogan, ‘no jab, no job’ is that people have a duty to ensure that they do what they can not to infect others.  That principles protects us, but it also protects other people.

Now, I am not personally a liberal, or anything like as liberal as Mill; I do think that there are clearly defined circumstances where we do exercise power over individuals for their own benefit, and we are right to do so.  One example is compulsory education; another is compulsory sanitation.  There are reservations to make: we do this to enhance people’s independence and autonomy, not to undermine them.  When it comes to subjecting other people to avoidable harm, however, the same reservations do not arise.  People are not entitled deliberately or recklessly to endanger the lives of others, and that’s what the current dispute is about.

There is one part of the case that is uncertain.  It has not yet been shown for certain that vaccines reduce transmission, and transmission, not infection, is crucial to the welfare of others.  The main risk of transmission is probably while the disease is  asymptomatic, so that people carrying the disease do not know that they are infectious.  The current advice from the JCVI, the government’s expert committee, is this:

There is emerging evidence that vaccination may prevent asymptomatic infection, which may be inferred as evidence of an impact on transmission. However, while these data are very encouraging, they are still limited and currently there is no strong real-world evidence of an impact of vaccination on transmission.

I’m going to treat the argument as having two stages.  First, let’s take it that the effect of vaccines on transmission is possible, or even likely, but unproven.  As soon as that is admitted, it raises a critically important question for any employer: is it legitimate for them to expose either their clients, or their workers, to the entirely unnecessary risk of breathing the same air as someone who refuses to be vaccinated?  I think the answer to that has to be ‘no’, and it is unsurprising to read that Care UK  has elected to tell its employees that if they do not get vaccinated, they will be treated as not reporting for work.  What is surprising is that any responsible employer or service provider would think that they might be able to take a different position.  If the obvious happens, and one of the people they serve dies, they are inviting legal action, and saying ‘we weren’t completely sure that the vaccines would actually work’ is a pretty feeble defence.

Second, let’s ask what happens if the link is proved, and it becomes evident that vaccines suppress transmission.  At that point, it becomes clear that the effect of not being vaccinated is to expose other people to serious risk of infection, disability and death; and at that point, the argument for compulsion becomes unanswerable.

Social care: a tale of two countries

You wait for ages for a review of social care, and two of them come at once.  One is in Matt Hancock’s rather strangely timed proposals for reform of the NHS; the other is the Feeley report for the Scottish government, proposing a National Care Service for Scotland.

The English report has the catchy title, Integration and Innovation: working together to improve health and social care for all – I wonder if  they hired a consultant to come up with that one?  It’s a proposal for legislation on a range of topics, but lots of topics are listed as the subjects of a forthcoming bill, and the topics that are listed are difficult to match to any text that lays out the rationale.   In relation to the integration of health and social care, the main proposal seems to be that there will be a law telling people they will have to collaborate more eagerly. We all know, it seems, that the real problem is that we need a supervisory body to bang heads together.  And that, as far as I can tell, is about it.  Not a word about finance, or budgets, or professional barriers, or liaison, or … much at all, actually.  I can’t help feeling that I’m missing something, but I can’t tell what.

The Feeley report, by contrast, is rather good.  For one thing, it starts by asking people, both service users and professionals, what the issues are it needs to address. It points, for example, to the current arrangements for getting specific services to people: “It’s the equivalent of NHS staff having to make a case for funding every time someone needs a blood test.”  The panels knows that care workers are woefully underpaid.  It recognises, as the Hancock report doesn’t, that there has to be money.  The report argues:

There is a gap, sometimes a chasm, between the intent of that ground-breaking legislation and the lived experience of people who need support. In the improvement world, there is a maxim which reads something like “every system is perfectly designed to get the results it gets”. … We have inherited a system that gets unwarranted local variation, crisis intervention, a focus on inputs, a reliance on the market, and an undervalued workforce. If we want a different set of results, we need a different system.  … We need a transformation of the way in which we plan, commission and procure social care support.

I don’t agree with everything in the report, but that’s what happens if people who know what they’re talking about make their case with a rationale  and evidence.

The Danmask-19 trial has not told us if masks work or not

A study from Denmark has put into question the effectiveness of wearing a mask.  It’s based on a randomised control trial of 6024 people, assigned either to a mask-wearing group or a control group that didn’t wear a mask.   42 people who wore masks, and 52 people who did not, contracted Covid during the test period.  The study notes that “the findings are inconclusive, with CIs [confidence intervals) compatible with a 46% decrease to a 23% increase in infection.”  Prof. Carl Henegan, writing for the Spectator, has seized on this as proof that any effect masks have is small.  (The Spectator, of course, has serial form in seeking to belittle or deny the seriousness of the disease.)

The problem with that conclusion (or the lack of it) is that the Danish study has not actually tested whether masks are doing what they’re supposed to do, which is to slow the rate of infection.  The graphic which follows, from the New Jersey Department of Environmental Protection, explains what should happen.   The control trial has been looking at people on the top two lines – putatively, groups at higher risk.  The distinction between the higher and lower risk (lines 1-2 and 3-4) depend on people who are infectious wearing masks to stop the spread.  There are claims on the web that the risk on line 1 is 90%, the risk on line 2 is 70%.  I don’t know whether those numbers are well founded, but if they are right, the expected values from 94 cases would be 41 masked cases (42 actual) and 53 unmasked cases (52 actual), which is bang on the nose.  The claim that the risk of transmission reduces to 5% on line 3 is potentially far more important, but Danmask-19  can tell us nothing about that.  Whatever the true figures may be,  the risk of transmission is not the subject of the control trial.

Mask Up!

Towards an exit strategy

The government and its advisers have fobbed off repeated queries about an exit strategy.  There was not enough information about the progress of the pandemic; it was too early to say; they didn’t want to distract from the message of social distancing.

I don’t know what our exit strategy should be, but I know what a strategy looks like, and none of those answers is relevant. A strategy, in this context, is a review of information, priorities, options and possible choices.  It’s not an action plan – that’s what you come up with after the approach has been agreed.  And if there’s only one option, and the choice has been made, it’s not a strategy –  it’s a policy.  Claiming that this is no time to consider an exit strategy is basically announcing that the government hasn’t thought about  what the priorities, options and choices might be.

I doubt that this is true.  The government almost certainly has a strategy; it just doesn’t want to tell us what its priorities, options and choices are, in case we, the public, should happen to disagree.  Their way is the only way.   It’s a fortress mentality – the same approach that they have taken to social protection, to Brexit, and to recent measures to help business.  And invariably it leads to worse decisions than there would be if the matter was opened to informed discussion.

One of the defining characteristics of a democracy, Joshua Cohen argues, is that it is ‘deliberative’: people are able to engage, to discuss and to disagree.  For any strategy to work in the current crisis, the government has to bring people along with it.  If they don’t consult about their options and choices, it puts compliance in jeopardy.  Imposing a single, authoritative policy is not ‘leadership’; it’s arrogance.

Additional note, 8th April I am feeling the same sense of irritation at statements that the government cannot ‘review’ its policy, as the Prime Minister promised.  It is too early to end the lock-down, they say.  ‘Review’ does not mean ‘bring to a close’; it means that one looks at a policy to see how it is working.  And it’s pretty clear that while some parts of the policy are working very well, others aren’t. 

The bits that are working:

  • there has been excellent compliance from the bulk of the population, slowing the spread.  We don’t need full compliance; we just need there to be enough.
  • time has been bought for the NHS to cope – we have reasonable hopes that what happened in Italy will not happen here.
  • food distribution – the supermarkets have done brilliantly.

The bits that aren’t:

  • social care provision – the model that depends on multiple visits by peripatetic staff doesn’t work
  • the protection of front line workers
  • the protection of people’s incomes 
  • management of access to public spaces, such as parks – closing them is bad practice
  • restrictions which have nothing to do with the spread of the disease – the ending of legal transactions, stopping people going to allotments, visits to second homes (the test is social distancing, not travel) and over-zealous policing.  Whatever happened to ‘reasonable’ grounds  for going out?
  • policing of abuses.  Where is the heavy equipment that was supposed to be used for major construction projects today?   (I ask because I already know it’s not where it’s supposed to be.)

The UK’s response to coronavirus has been marked by incompetence.

It’s a difficult situation for any government to manage, but the problems  produced by coronavirus have been marked by muddle and incompetence in the response from the government.  I think we can exonerate them of three serious charges.  It was not inappropriate to delay the initial response: they judged, that people would not comply with instructions until they were convinced of the seriousness of the situation, and so it proved.  It was not obviously wrong, before the numbers became apparent, to ask whether the disease could be allowed to run its course with with only moderate social distancing.  (An illuminating set of simulations, published online by the Washington Post,  suggests that this strategy would still have been more effective than quarantines.)  And it is not wrong to impose restrictions that cannot be adequately enforced.  The nature of the disease’s spread is that every reduction in social activity limits the potential of the disease to spread.  It cannot be stopped, but it can be delayed, and delay makes it more possible for services to cope and ultimately to the availability of a vaccine.

Having said that, there have been several marked problems in the government’s response to the situation. The problems include:

    • Preparation
      • The lack of testing means that the government has not been able to keep track of what is happening, let alone manage public health issues such as contact tracing.
      • The failure to provide personal protective equipment for medical staff is utterly disgraceful.  Hospitals have become a danger zone.
    • Protection
      • The government’s first response was to protect business; its second response was to protect employees.  There are still major problems evident in the protection of people in precarious employment and those on benefits.  I have covered those issues separately.
    • Process
      • Contradictory and inconsistent advice.  There have been frequent, repeated, muddled statements from different government ministers and advisers about what is required, what the rules are, and who is affected.  Instructions are imprecise.  For example, there is still prevarication about what is essential work, such as whether or not construction can proceed.  And if the aim is self-contained households with minimal interaction, what is wrong with individuals working alone on an allotment?
      • Announcements have been sudden and immediate, making it difficult for people to close business or even to move physically to the right location for isolation.
      • Over-reaction.  The police have criticised the public for going to isolated places to walk and exercise.  I am in the middle of a house move – my furniture left on the van on Friday – but the registration of  property transactions has stopped,  and the Law Society has advised solicitors not to conclude business.  I don’t claim any medical expertise, but I think I can say with confidence that coronavirus cannot leap down the circuitry of internet communications to emerge at the other end and eat you.

Covid-19: a few questions about the government advice

I was asked once to examine a sick sheep.  What I know about the diseases of sheep and other animals wouldn’t cover the head of a pin, but I manfully walked up to the sheep in question.  It promptly got up and ran away.  I was able at least to call back, “It’s alive”.  It’s always nice to find oneself in a position to make definitive pronouncements, and it seems to me that many of the statements coming from government have at least as much authority as I did with the sheep.

The strategy of the UK government is to normalise the illness, as we have done with other killers such as influenza: allow for large numbers of healthy adults to be infected, reserve special defences for people who are particularly vulnerable, and accept that some people will die.

This position is out of step with the WHO advice, which is to contain the illness.  It is not indefensible, but there are a few holes to fill in the policy.

Question 1:  How will we know if the government’s strategy is working?  If there is no routine testing, we cannot say much if anything about numbers – and so, we will find it difficult to say whether or not the policy is working.

Question 2: What is the cost of telling people not to seek help?  The recommendation to self-isolate and soldier on through the course of the disease depends heavily on people contacting services in due course when problems become serious.  That involves more than self-isolation: it depends on self-assessment.  How many people will this kill?

Question 3:  What happens to people who can’t self-isolate?  The advice that is being given asks people to isolate themselves within their home, to keep a distance and not to make contact with others.  That is feasible for about two-thirds of the UK population.   The others don’t necessarily have a space they can isolate themselves in.  Some have no home; some share their bedrooms with others.  And we might point out that the UK government has issued various edicts requiring poorer people to share rooms.  It is the policy of the UK government not to permit people on benefit to be supported if they have spare rooms, and to penalise them financially  if they do.

Question 4: What happens to people on benefits?  As things currently stand,  there are severe penalties for non-compliance with benefit regulations, including the requirement to seek work, to attend meetings and appointments, and to be available.  Benefit claimants have limited room for manoeuvre – there are limits on how many periods of sickness and how long a person can be excused.

Question 5.  Where, in a society in lockdown, will people’s income come from?  In the short term, the problems identified in questions 3 and 4 could be dealt with in part by two immediate measures:  stop the bedroom tax, and stop all sanctions.  There is a more severe underlying problem, however: our economy and our labour market do not deliver regular, stable incomes for many people.   Under the old system of Unemployment Benefit, people reduced to short-term working or interruption of earnings would receive direct help, based not on a personalised means test but a simple question, about whether or not they had worked on that day (any day where someone had earned £2 was deemed to be a day at work).  We no longer have that system.  Successive governments have undermined the principle of social protection.  We need it more than ever.

Harry Burns on mortality figures

I’ve recently joined the board of Barony Housing Association, which is part of the Wheatley Group, and consequently was invited to a institutional lecture by Prof Sir Harry Burns, who was considering mortality statistics in Scotland and the UK.  He made the case that, despite the emphasis on nutrition in much of what’s written about public health, nutrition is not at the core of the problems.  Scotland’s nutrition-related mortality follows a pattern, astonishingly, which is not much different from Finland’s.  Finland has an exemplary nutritional policy and lots of virtuous practices, and Scotland (notoriously) doesn’t.

The real difference in mortality, he argued, occurs in younger age groups; and the primary issues for the mortality of younger adults are drugs, alcohol, violence and suicide.  All of which are social.

The reform of social care will take more than money

The House of Lords Economic Affairs committee has called for free personal care in England, on lines similar to the system in Scotland.  “Under free personal care individuals would therefore only receive funding for support with these basic activities of daily living, based on the minimum threshold of eligible needs as defined by the Care Act.” They are recommending a major increase in the funding for social care, so that care can be delivered on much the same terms as health care.  However, they accept that people should pay accommodation costs themselves, with means-tested support, and they recognise that this might entail “catastrophic accommodation costs” which might have to be subject to a cap.

This has been welcomed as a radical proposal, but it doesn’t touch on most of the problems that go with social care.  We’re still thinking of social care as a set of needs which can be satisfied by specific cash payments.  The Lords report explains:

“Personal care means essential help with basic activities of daily living, such as washing and bathing, dressing, continence, mobility and help with eating and drinking. It does not include other areas where support might be needed, such as assistance with housework, laundry or shopping.”

I don’t believe that a system based on this approach can ever deliver what people want to see.  I don’t believe people want, or are comfortable with, successive 15 minute visits from a team of people who bathe them, or dress them, or help them to bed.  I don’t believe that what most people really want in life is to manage a rota.  I don’t think that providing for a series of events, sold as if they were commodities, meets people’s human needs.  What we should be allocating is time with a person, and that calls for a different approach to assessing needs from one that focuses on whether or not someone needs help with brushing their teeth.

What’s wrong with the idea of opening the NHS to US traders? Plenty.

There’s been a lot of discussion about the potential for a trade agreement with the USA and its possible impact on the NHS.  “I think everything with a trade deal is on the table,” Donald Trump has said.  “When you’re dealing in trade everything is on the tabl,e so NHS or anything else, a lot more than that, but everything will be on the table, absolutely.” The response of those who want there to be such an agreement has been to say that it won’t matter – a “storm in a teacup”, one IEA spokesperson commented. US firms are already providing services in UK health care.  Services can be provided by a range of providers; what matters for the consumer is that the NHS continues to offer services that are free at the point of delivery.

This view may be disingenuous, because there is a strong financial incentive not to see the problems.  It is certainly mistaken.  The usual complaints from the left are that profit-making firms are extractive, and that competition consumes resources.  Either might be true, but the problems run much deeper than that.  There is now abundant evidence of what happens to public services when ‘competition’ or part-privatisation is introduced.  I have just had a paper rejected which makes the arguments in some detail – admittedly it’s too tendentious for an academic journal – but I can sketch out a couple of points here.

There is no system, anywhere, that is wholly public, any more than there is a system that is wholly private.  The NHS has had an uncomfortable relationship with the private sector, but its successful functioning relies mainly on two pillars: that the private sector is small and select, and that the services are sufficiently integrated to ensure that really serious cases can be taken over by the national service.  Both of those are at risk from creeping commercialisation.

The fundamental problem in any mixed system is that commercial providers get to choose what they cover; public providers, committed to meeting the needs of a population, do not.  Commercial providers select those areas of operation which they are undertaking to provide – that is how markets work.  That means that in general they will select those activities which deliver the best return per unit.   It follows that some things will be left out; when they are, the public services will have to deal with them as provider of last resort.  (Take a simple illustration, delivering post and parcels.  If private firms can subcontract for the profitable bits, they choose the easy runs – between major cities, or within busy areas.  In the case of private health care, that has generally meant a preference for relatively low-risk elective surgery, while long term psychiatric or geriatric care don’t attract the insurers or the services.)

Taking those points together, that must also mean that public services have a higher cost per unit than the private services – the difference is built into the process.    Politically, there are constant complaints that public services don’t work as well as private ones.  Of course they don’t; they have to take on the bits that private providers leave behind.

That’s the unavoidable part of the problem.  Some other things follow in the wake of that structure.  They may be avoidable, but they are still difficult.

  • There is a continuing incentive for private providers to cut corners – skimping on service, paying less, holding to the letter of complex contracts.
  • The public sector has to develop processes for sub-contracting and compliance, which are expensive and uncertainly effective.
  • When private providers get it wrong, and services collapse, the public services have to pick up the pieces.

There’s obviously a lot more to be said about competitive structures, but that’s why I started out trying to write a paper on it rather than a blog entry.