I first came across this story on the BBC News website on Wednesday morning last week. According to the report: “The number of stillbirths and deaths shortly after birth remains stubbornly high, claiming 17 babies every day on average in the UK, a report reveals. Every year in the UK nearly 4,000 babies are stillborn and another 2,500 die within four weeks. The stillbirth rate has not changed for a decade.”
The article then went on to quote a comment from the “Department of Health in England”, saying “there had been an increase in midwives and consultant obstetricians, and increased investment in the field”. This combination of statistics supposedly relating to ‘the UK’ and reaction from the DoH England [give them their due, the BBC do now more consistently make it clear when a UK government department has England-only responsibilities] immediately registered on my Britology radar: ‘are these UK figures actually England-only figures?’, I asked myself. Otherwise, why gauge reaction only from the English department concerned without any further comment relating to the rest of the UK? Such a practice usually is code for England-only information passing under the generic UK / Britain label.
The report about stillbirths and neonatal deaths was produced by the charitable society of the same name, the Stillbirths and Neonatal Deaths Society, or ‘Sands’. In fact, the document was due to be launched at the House of Commons later the same day, so it was not yet available for download. I scoured the Sands website in vain for information about whether the research and the activities of the charity were focused on England only or on the whole of the UK. The website talked only of UK-wide facts and figures, and in fact, it did not mention the word ‘England’ once anywhere. After more extended web research, I did manage to confirm that Sands is the established UK-wide charity organising emotional support and raising funds for research on the topic.
Later on in the day, I caught the BBC1 lunchtime news, where there was a more extended version of the report than had appeared on the BBC News website. This was an absolute masterpiece of ambiguity, which managed to completely avoid mentioning whether the Sands report related to England or to the whole of the UK, failing to (or perhaps succeeding in not) utter(ing) any of the words ‘England / English’, ‘Britain / Britain’ or ‘UK’. Any casual viewer would undoubtedly have been left with the impression that the information related to the whole of the UK; but this was never explicitly stated, even though Sands was calling for a ‘national’ [by implication, UK-wide] action plan to reduce the number of stillbirths and deaths in early infancy.
By now, I was getting really intrigued, and really frustrated. ‘Does the Sands report relate to England only or not; and if it does, why do they seem to want to suppress this fact rather than drawing comparisons between the situation in England and elsewhere in the UK, which would almost certainly be more embarrassing to the government?’, I wondered. I checked the Sands website in the evening – and still no report available to download. I was so irritated that I fired off the following email to the organisation:
“Dear Ms Duff [Sands’ Communications Officer],
“I followed with interest the press coverage today surrounding the launch of your Saving Babies’ Lives report. Will this report be available for download from your website soon?
“I am also interested to know whether its findings and recommendations relate to the whole of the UK or to England only, as the UK government and the Department of Health are responsible for healthcare and the NHS in England only. The media coverage (e.g. on the BBC1 lunchtime news) was somewhat unclear on this point. On your own website, you call for a nationally co-ordinated action plan (implying across the UK). But clearly, the government can only really co-ordinate all the measures required to reduce the number of stillbirths and neonatal deaths in England – unless your report recommends some sort of high-level, UK-wide co-ordination involving the participation of the governments of Scotland, Wales and Northern Ireland.
“I look forward to your reply.”
I don’t know whether this letter was viewed as a nuisance or irrelevance, or whether they were just plain too busy, but I haven’t yet received a response. In fact, it may well have been too close to the bone, as became evident when the report did finally appear on the website on Thursday and I was able to download it.
This is where I have to throw in a disclaimer. In some respects, I’m reluctant to critique this report, which is full of heart-breaking pictures of would-have-been parents cradling their stillborn infants, and desperate accounts of the devastating effect that stillbirths and neonatal deaths have on individuals and families. I’m not blaming Sands for the approach they’re taking, which is completely consistent and conscientious. I blame the UK-cum-de facto-English government and the effects of poorly managed, asymmetric devolution. So, as they say, the views expressed in this post are mine and do not necessarily reflect the opinions of Sands.
Apart from all the detailed data on stillbirths and mortality in early infancy, and the recommendations for alleviating the situation, a clear underlying message that emerges from the Sands report, for me, is that the failure to reduce the incidence of these traumatic events is closely connected with asymmetric devolution. Sands don’t spell this out because they want to encourage government to develop a co-ordinated cross-UK strategy and set of policies that strongly prioritise the issue. Hence, their tactic appears to be that of taking the moral high ground and arguing that this is such a critical social issue (responsible for far more deaths, for instance, than road accidents or cot death) that the government should rise above the political obstacles and start dealing with it.
But the political barriers are evidently key. As the report itself says:
“In the UK a combination of problems means we fail to identify many babies who are at risk, and to ensure their best possible chance of life:
• We lack knowledge, data and research into why babies die.
• We have no reliable way to predict which pregnancies are at risk of stillbirth or death early in life.
• There is little awareness of the extent of the problem or what the risks are.
• We don’t have the resources in maternity care to ensure optimal care for every baby.
Above all there is no political will to make things change [my emphasis].”
Why is there no political will to make things change? The problem, it seems to me, is twofold:
- The UK government – which is the primary intended audience for this report – lacks the political will and, more importantly, the political muscle and power to co-ordinate and implement a UK-wide strategy in this area. Post-devolution, the remit of the UK Department of Health stops at the borders between England and Scotland, and England and Wales. And there’s been a failure, precisely, to develop mechanisms to co-ordinate strategy, share knowledge and implement best practice in areas of social policy, including healthcare and the (four) NHS(‘s), across the four nations of the UK. (See my discussion of this elsewhere.) And this sort of co-ordination is especially critical with respect to stillbirths and neonatal deaths, according to the Sands report.
- The UK government has even been unwilling to own and embrace its responsibilities to formulate priorities and develop social policies for England as England, and has tended to wash its hands of its duties as the de facto English government by passing on or outsourcing the setting of healthcare priorities to Primary Care Trusts and an increasingly marketised healthcare sector. This has also resulted in a failure to set adequate priorities and co-ordinate measures to deal with stillbirths and deaths in early infancy, as emerges from the report; although Sands does not link this explicitly to the contrast between the situation in England and the devolved UK nations.
One area where the government could co-ordinate action at a UK-wide level, and which is vital according to Sands, is in research into the causes of stillbirths and neonatal deaths. As the report says, “A serious lack of direct funding for scientific research to understand and prevent stillbirths is holding back progress that could be made in reducing the numbers of deaths”. Scientific research is a reserved power, so the UK government could directly fund research in this area; and Sands is calling on the government to match the £3 million it is raising for this purpose. £3 million: absolute peanuts compared with the billions the government is pumping into the banking sector. But, as I said in that previous discussion, as the UK government has retained the responsibility for managing the economy but not the ability to formulate joined-up social policy throughout the UK, it tends to prioritise the economic over the social: in England, that is, as the devolved administrations do have a social vision for their respective nations.
Indeed, one of the problems about a direct-funded research programme is that it has to be underpinned by co-ordinated cross-UK data gathering. As the Sands report says in its next recommendation: “Data collection on pregnancies is limited in the UK, the exception being in Scotland. We need nationally collated, detailed and standardised data about all pregnancies and outcomes on which to base research”. Well, yes, that says it all, doesn’t it? In fact, before devolution, there was a ‘national’ (i.e. UK-wide) programme for gathering data on the issue, called CESDI: Confidential Enquiry into Stillbirth and Deaths in Infancy. But, as the report indicates, “these enquiries have stopped since the formation of the Confidential Enquiries into Maternal and Child Health (CEMACH) which has less funding to cover a far wider remit of work. We would like to see resources to enable a return to enquiries into all stillbirths, in particular those which are unexplained”.
The last CESDI report was published in 2001; and from 2003, its work was taken over by CEMACH, which looks into maternal and childhood deaths (up to the age of 16) alongside perinatal and neonatal mortality – and does in fact have a much smaller budget than did CESDI alone. In England, Wales and Northern Ireland, that is. In Scotland, on the other hand, as the report reiterates elsewhere, “detailed information about pregnancies and outcomes is available”. Why? Because the CEMACH work in Scotland is separately funded by a body known as NHS Quality Improvement Scotland (NHS QIS), which in fact will be taking over the whole CEMACH survey in Scotland from October of this year. (I add that this particular gem of information is not contained in the Sands report; I trawled it up from the CEMACH website.)
So let’s summarise. Research in Scotland is still focused on the specific problems of stillbirth and neonatal deaths; it enjoys superior funding to England, Wales and Northern Ireland, which are dependent on the CEMACH process; and until as recently as 2007, the CEMACH survey was also using a flawed methodology. As Sands informs us: “From 2007 CEMACH has adapted [the Wigglesworth] classification system to address its widely recognised limitations, particularly in gathering information about conditions associated with a death”. On top of this, the Scottish NHS is abandoning the CEMACH process altogether from later this year. And no political will exists to sort out these disparities and ensure that rigorous data gathering of the kind that still takes place in Scotland is co-ordinated across the UK. Surprise, surprise.
A similar lack of political will seems to prevail with respect to ensuring the dissemination of best clinical practice. For example, the report states: “The Royal College of Nursing and other stakeholders are currently working on a UK-wide framework for the education and training of neonatal nurses. But this framework must be adopted in order to be effective”. Well, clearly, there has to be the ‘political will’ to standardise processes and share knowledge across the four national NHS organisations. And there would have to be a commitment to make the necessary investments to raise standards, which would be particularly costly throughout England, whereas this is easier to achieve in Scotland owing to its smaller scale and higher per-capita level of public expenditure, guaranteed through the Barnett Formula. I’m reading between the lines here; but it stands to reason that if there were enough political will to introduce the improved training framework in England, then there would be no problem about standardising it across the other UK countries owing to their higher proportionate share of the public finances. So the issue must be that the government is unwilling to spend the extra money in England (with the Barnett consequential of even greater expenditure in the other countries), while the devolved administrations presently do have the financial and political latitude to roll out improvements in this area.
And evidently, to judge from the Sands report, these improvements are desperately needed. At times, the report reads like a catalogue of failure to learn from avoidable mistakes in antenatal care, childbirth and neonatal intensive care, resulting in babies continuing to die unnecessarily from the same causes. And there is not just a failure to disseminate best practice, share knowledge and prioritise the issue but also a lack of resources: insufficient antenatal healthcare personnel, such as midwives and other specialists, who might be able to help detect problems earlier on in pregnancy; inadequate staffing levels in intensive-care units for premature babies, such that only 14 out of 50 of such units ‘in the UK’ are able to provide the one-to-one nursing care that the British Association of Perinatal Medicine (BAPM) regards as a minimum standard.
The fact that the statistics are aggregated across the whole of the UK in this way is one of the shortcomings of the Sands report. This prevents one from being able to gauge whether the problems are significantly worse in England than in the other UK countries, which would be linked to the funding inequalities and strategic issues (lack of UK-government focus on this as a serious social issue in England) resulting from asymmetric devolution. I have no way of knowing how many of those 14 under-resourced intensive-care units are located in England; but I’d be willing to bet that none of them are in Scotland. It has to be said that all the specific examples of bad practice and inadequate resourcing, and all of the references in the body of the report to comments from clinical experts or to other reports on the issue, are drawn from England.
Another aspect of this topic that is exclusive to England is the way that the processes of funding the NHS contribute to the inadequate priority and insufficient resourcing that are given to stillbirths and neonatal deaths. These are described by the report as follows:
“Newly implemented commissioning structures between the Primary Care Trusts (PCTs) and hospital trusts have been evolving to meet new government structures. While this brings more focus to what is required from maternity services in each hospital, contracts may omit any proactive remit to reduce perinatal deaths. An issue that is not highlighted in a contract for funds is less likely to attract specific focus or resources.
“As the contracts come into place hospitals can negotiate additional funds for posts or for focus as they see fit. However, many hospitals see contract negotiations as being driven by the PCTs and only a few have seen the opportunities provided by being able to focus on local issues.
“It is unclear what is or is not included in the tariffs paid to trusts for obstetric services, with a great deal of room for interpretation on whether or not tariffs have been adjusted to allow for the funding of quality improvements. For neonatal care there is no nationally mandated funding system and health economies are left to make their own local arrangements which leads to an inevitable variability in the level of care provided.”
What the report doesn’t state explicitly at this point is that these funding mechanisms that have evolved to meet ‘new government structures’ and this lack of a ‘nationally mandated funding system’ for neonatal care exist in England only; as it is only in England that the government is still calling the shots when it comes to NHS funding and healthcare priorities. The system described above has been developed deliberately to allow a greater role for market forces, with individual hospital trusts competing for funding from PCTs based on their proven record to meet government targets and treat larger numbers of patients with different types of medical need. What this leads to is the creation of centres of excellence and a concentration of investment in particular ‘generic’ areas (such as maternity services, as described here), which can then more successfully bid for funding. But this means that certain specialisations within those generic areas (such as neonatal care) are not prioritised in a strategic way, as the focus is more on generating a critical mass in more ‘fashionable’, headline-grabbing areas of care that can attract funding in a bidding war, rather than on actual clinical and social need: in this case, more resources for preventing and dealing with stillbirths and neonatal deaths. By contrast, as is evident from the dedicated resources allocated to the issue at a national level through NHS Quality Improvement Scotland (referred to above), stillbirths and neonatal deaths are a nation-wide NHS priority in Scotland.
For me, one of the things that emerges clearly from the picture of failure painted by the Sands report is a demonstration of the harmful consequences of asymmetric devolution. No progress has been made in improving clinical outcomes in ten years: the ten years during which devolution of healthcare has been in place, with different systems, and levels and mechanisms of funding, in place in each of the UK’s four nations. This has led to an absence of strategic UK-wide focus on stillbirths and neonatal deaths, with the consequence that there has been inadequate funding of scientific research, and a failure to disseminate best practice and drive through better training of specialist nursing staff. This is clearly linked to the funding inequalities built in to the asymmetric devolution settlement. The report cites Scotland as the only example of adequate data gathering on the causes of stillbirths and neonatal deaths, after the successful pre-devolution information-gathering process (CESDI) was abandoned in favour of a more poorly funded and less specifically focused system (CEMACH) in England, Wales and Northern Ireland (but not Scotland) under the auspices of the infamous NICE (National – e.g. English – Institute for Clinical Excellence).
Meanwhile, there has been a lack of strategic focus on the issue in England, which in my view is linked to a general unwillingness on the part of the UK government to assume its responsibilities as the de facto English government in most areas of social policy, including the NHS. Instead, funding and prioritisation in England has been left in the hands of PCTs as part of a process designed to foster the development of a competitive healthcare market within the NHS. But, as we know, markets lead to winners and losers, and stillbirths and neonatal deaths have lost out to more market-friendly areas of obstetric and paediatric medicine where it is easier to demonstrate a return (improved patient outcomes) on investment, compared with the difficulties in making gains in stillbirths and neonatal deaths, where the causes of mortality are still often a mystery. But unless the resources are devoted to greater research and improved clinical care in this area, no improvements will ever take place.
Where I take issue with the Sands report is with its tactic of treating the issue purely at a UK-wide level, without differentiating between the nation-specific circumstances that are contributing to the ‘postcode lottery’ of varying standards of care and prioritisation throughout the UK. The report correctly identifies that the political dimension is key. And one absolutely fundamental aspect of this is that the UK government, in this area as in so many other aspects of healthcare, is unwilling to commit the levels of investment and to prioritise the issue at a national level (that is, an England- and hence UK-wide level) in the same way that it is prepared to enable the devolved governments to do so on a more limited scale. The pattern is: cut expenditure in England, and hand the thing over to the market as a supposedly more efficient way to deliver healthcare in line with patient customer demand, in order to release higher levels of funding on a smaller scale for Scotland, Wales and Northern Ireland.
Until these structural and national inequalities are removed, there can be no integrated UK-wide strategy for beginning to reduce the number of stillbirths and neonatal deaths. Perhaps we may never be able to reinstate a coherent UK-wide strategy in this area given the lack of political will to reform the present asymmetric devolution settlement. But the government at least has a duty to drive a strategy on stillbirths and neonatal deaths for England. However, I doubt this will ever happen until there is a proper elected English government, genuinely accountable to the English people.