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Leeds Children's Heart Surgery: twisted statistics, conflicts of interest and hidden agendas

Has the government, once again, ignored due process and legal rulings in the decision to close down a children's unit at Leeds General Infirmary?

Steve Walker
8 April 2013

In February, a judge ruled in favour of a university graduate's claim that the government's 'workfare' regulations were illegal. Within weeks, government introduced emergency legislation to render its judicial defeat irrelevant. Not only that, but it also made the new rules retroactive, breaking centuries of clear legal principle and setting a precedent that has been widely condemned for the damage it could do to British justice.

Just before Easter, a High Court judge handed down her finding that the decision to close the children's heart surgery unit at Leeds General Infirmary (LGI) had been made illegally, calling the decision “ill-judged” and expressing her unhappiness with the language used by senior decision-makers. Sir Neil MacKay, Chair of the Joint Committee of Primary Care Trusts (JCPCT) stated that the committee was “strongly considering our grounds for appeal” against the decision, but did not mention any issues with the quality of care provided by the Leeds unit.

Less than 24 hours later, the Medical Director of the NHS announced that the unit was to be closed anyway. Apparently, the 'discovery' of a “constellation” of reasons, along with “rumblings” within the cardiac surgery community that “all was not well” at Leeds, required the immediate and very convenient suspension of surgery at the children's heart unit.

If you think you see a common pattern of behaviour in two completely disparate circumstances, you may well be perfectly justified. In both cases, an inconvenient judicial decision appears to have been side-stepped in favour of other means of pursuing the desired ends, apparently with complete disregard for normal processes.

If anything, the latter situation appears far worse. In the workfare case, the government made little effort to disguise the reasons for its action, admitting that its reason for introducing unprecedented retroactive legislation was to avoid compensation claims by millions of unemployed people whose benefits had been illegally 'sanctioned'. A crude and unfair measure – but at least a transparent one.

In the case of the Leeds children's heart unit, the decision to halt services in spite of the legal verdict appears to have been dressed up in rumour and flawed science. There are grounds to suspect the true agenda is not only to avoid accountability to the law but also to disguise serious flaws and bias both in the original decision and in the subsequent manoeuvre to effectively shut down the unit anyway.

That the unit now looks set to be reopened does not remove concerns about the way in which the original decisions were reached. Nor does it undo damage done by the decision and by what has been said and published around it. As the BBC News website observed last week, “if the unit does reopen, Leeds General Infirmary will have to reassure patients and families that safety of care is paramount.”

Since one of the reasons given by Monitor for its recent decision to put Mid Staffs Foundation Trust into administration was that the Trust’s ‘brand’ had become ‘toxic’, this damage to LGI's public perception could be disastrous to the chances that those who rely on LGI’s paediatric heart services will continue to have access to them.

So what does an examination of the decision-making process tell us?

Conflict of interest

The original decision to close LGI was criticised for the fact that it would have left only two, widely separated centres for children’s heart surgery in the East of England – London and Newcastle. Seriously ill children would face repeated long journeys to distant centres for life-saving treatment, with all the attendant risks as well as considerable hardship for their families for years, perhaps even generations.

Surely for such a decision to be taken there must be over-riding reasons?

Perhaps so. But they have been well hidden. The original 'scoring' process used to reach the decision was extremely opaque and full of subjectivity, as the judge observed. Scoring included 'multipliers' that increased the score of some hospitals more than others, and which were based on such nebulous factors as 'management accountability'. Crucial factors such as co-location of complete acute services, so that children could receive treatment for other problems without having to leave the unit, may or may not have been weighted more heavily than the vaguer factors. But because the weightings were kept secret, there is no way to know.

When LGI tried to obtain information on the judging criteria, this was withheld even in the face of a Freedom of Information request. When the information was eventually released there were several versions, with many discrepancies among them – and the crucial weightings were not included.

However, there is a potentially even more sinister aspect to the decision-making process. In reports on the original decision to select the more centrally-placed Leeds unit for closure, one important fact has generally been conspicuous by its absence – the presence on the decision-making committee of an individual with what appears a vested interest in the outcome.

This committee was the JCPCT's “Safe and Sustainable” (SaS) steering committee, whose vice-chair is cardiac surgeon Leslie Hamilton. Mr Hamilton is based at Newcastle upon Tyne Hospitals NHS Foundation Trust – the same Trust whose children's heart surgery unit faced closure if the LGI unit remained open.

An article in last Thursday's Guardian criticised a “turf war” among surgical units:

What is happening in Leeds is a fight over the bodies of small babies born with heart defects. It would have been good to think it could have been sorted out in quiet, compassionate and well-informed discussion exchanging evidence around a table.

Maybe. But even if Mr Hamilton's conduct has been exemplary (and there is no evidence that it wasn't), the mere fact of his employment and allegiance constitutes a conflict of interest so clear and unavoidable that the SaS decision has to be considered unsound and deserving of resistance.

Flawed statistics

Last week, I spoke to one of the Leeds consultant cardiac surgeons. Surgeons have to be calm, extremely focused people, but this surgeon spoke rapidly and was clearly incandescent about what is being said about the competence and outcomes of the Leeds unit – that there have been severe safety concerns, including allegations that its mortality rates were twice the national average.

These allegations were swiftly challenged from various quarters. Problems with the data were pointed out, resulting in the referral of the statistics for more detailed analysis. However, last week’s Guardian carried a prominent article (the same one that criticised the 'turf war') stating that subsequent analysis of Leeds' corrected statistics still “shows that its death rates are unacceptably high”.

This appears to be completely untrue. According to my consultant contact, as of Thursday morning, when the article was published, the data was still with the Leeds team for its input. For such a claim to appear in a prominent Guardian article suggests that the newspaper's journalist was intensively 'briefed' by someone closely connected to the issue with a desire to influence public perception ahead of the release of more accurate analysis.

Professor Sir Brian Jarman, author of the 'HSMR' system of statistical analysis of clinical outcomes, has published statistics indicating that, far from being 'double' the national level, mortality rates for children's heart surgery at Leeds are in fact below the national average. The SaS steering committee is apparently using a different data set (known as CCAD) to calculate mortality rates. However, the raw numbers will be the same or very nearly so in both cases, and a look at these figures will give a strong indication whether there is a real problem in Leeds.

The surgeon told me this morning that a national measurement of children's heart-surgery outcomes shows an average mortality rate within 30 days of surgery of around 2%. The graph below shows the mortality rates as a percentage of total surgeries for all of England's children's heart surgery centres, plus the rate for the country as a whole, for the period from 2009-2013 (click to enlarge image):

 

Far from being double, the Leeds rate (1.77%) is slightly below the national average of 1.79%. So much for 'double the national average'. Alder Hey and Birmingham have far higher mortality rates, yet will remain open under the JCPCT's plan.

This graph represents 'raw' mortality, without any of the statistical adjustments that are performed for 'case mix' and other factors to achieve 'standardised' rates. But any adjustment to such small data sets that will take a hospital from being below average on raw numbers to being 'double' the average in the 'standardised' results is inherently unsound – because any statistical adjustment or assessment based on such small numbers has to be unsound.

In order to achieve any kind of reliable statistical measurement, a large enough number of 'episodes' has to be recorded. If this number is too small, chance variations have a disproportionate effect and cause false trends to appear. The numbers of cases per hospital – even over a 4-year period from 2009 to now – range from a low of 384 cases to a 'high' of 1,223. Even the uppermost figure is too small for reliable, meaningful statistics.

'The Dutch Surgeon'

One of the most telling aspects of yesterday's Guardian article was the implication that there was something suspicious about the fact that 'a Dutch surgeon' flies in monthly to perform surgeries at LGI, calling it “a highly unusual move”

Yet the situation is quite simple, and far from incriminating. The surgeon, Catharina van Doorn, used to work at the Leeds unit and, according to my consultant contact, is extremely capable and has certain rare, specialised skills. She is brought across to perform surgeries when more surgical capacity and those specialised skills are needed – which is anything but incriminating.

For such an innocent and even positive fact to be used to insinuate something sinister or furtive speaks volumes about the objectivity – or lack of it – of the reporting. This raises worrying concerns about undue exertions of influence that are consistent with the apparently 'briefed' nature of the handling of the information about the statistics.

Ulterior motives?

To anyone who follows NHS issues closely and perceives their wider context, it's very obvious that the decision to close LGI's unit forms part of a wider pattern of closures, downgrades and 'rationalisations' taking place under the current government to simplify the structure of the NHS and concentrate services in such a way that they will be more attractive candidates for eventual privatisation.

A stark example of this wider phenomenon is the decision to downgrade Lewisham's hospital – because of problems at a  separate Trust – to a centre for knee and hip joint replacement. Such low-complexity, 'production-line' procedures can be carried out in high volumes at low cost, leading to obvious advantages for a future private operator.

Rationalising specialisms into so-called centres of excellence has, so far, failed to deliver the improved outcomes that were mooted to justify it - but it does fit perfectly into the government's strategic pattern. Doing this to services that are vital to the survival of children is disturbing enough, but the fact that the decision about which centres to close is being led by a surgeon with a clear conflict of interest is even more worrying. Because of these factors, the Leeds decision merits extremely close scrutiny – a scrutiny which appears not only to have been been lacking but apparently assiduously avoided.

Events in Leeds certainly indicate serious problems – but they are problems with the process, transparency and ultimate goals of the decisions being imposed on it, rather than with the standard of its surgery and services.

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