Part II of this book signifies a shift in emphasis for the British vaccination programme. Some of this was due to maturity. By the 1970s, many of the fundamental questions about which vaccines to include and whether the state had a role in protecting the British public had been answered. Citizens had come to accept vaccination for themselves and demand it of others. Other changes were due to political and historical circumstances. Whereas MOHs had played a key role in the administration of immunisation from the 1940s to the 1960s, these functions were subsumed by the Department of Health and Social Security (DHSS) in the 1974 reorganisation of the NHS. The DHSS and its predecessor, the Ministry of Health, had attempted to exert more central control over and unification of the vaccination programme. This was seen in the surveillance of local authority uptake statistics; a growing role for the medical civil service through bodies such as the JCVI; and national control over the provision and funding of vaccine supplies to the regions.
These issues of localism did not disappear. General practitioners took ever greater responsibility for ensuring that their areas met centrally determined targets for vaccination rates. However, with a mature programme and a tried and tested vaccination bureaucracy, the major concerns were different. No longer were there regular surges in demand to cause supply issues. Nor was apathy so acute in a system that could better monitor and follow up with parents who did not vaccinate their children. Rather, the key crises for the national vaccination programme came when the new status quo was challenged. This was exemplified in two key incidents in which faith in specific vaccines was damaged. Chapter 5 will examine the MMR vaccine crisis and the subsequent sociological debates about vaccine confidence and health education at the turn of the millennium. This chapter deals with pertussis.
In the mid-1970s, some doctors questioned the safety of the pertussis (or whooping cough) vaccine, claiming that it could cause brain damage in young children. Despite protestations from the majority of the medical community, public confidence in the vaccine dropped significantly. Pertussis vaccination rates fell from 78.5 per cent of children born in England and Wales in 1971 to 37 per cent in 1974.1 As a result, the whooping cough outbreak in the winter of 1978–79 was worse than any since the 1950s. It was not until the mid-1980s that vaccination rates recovered and infection rates returned to pre-crisis levels.2 To counter negative publicity, the government commissioned a report into the science behind the vaccine and embarked on an advertising campaign to encourage parents to vaccinate their children. But science and medicine formed only part of the debate. As they had been from the first vaccination programmes, questions about the boundaries and responsibilities of the state were central. In the case of pertussis, public health policy was considered alongside social security and the wider welfare state. If the hazard of brain damage was real, regardless of how small the risk, did the government not have a duty to provide support for the families adversely affected by vaccines? Similarly, if herd immunity was a crucial part of a functioning public health programme, did the health authorities not have a duty to ensure that uptake was as high as possible? Citizens demanded that the state should provide protections, but also that citizens should be protected against state actions.
This chapter, therefore, is about risk. We have already seen how statistical computations of risk were used in the vaccination programme. The decision to ban imports of Salk vaccine from North America had been taken because it was felt that the British vaccine was less likely to cause damage. Routine infant smallpox vaccination ended when the risk of damage from the vaccine was considered higher than the risk of an unvaccinated population actually catching the disease. Diphtheria immunisation was hailed as a success because immunised children were less likely to contract the disease, and if they did they were much less likely to get a serious form of it. Such statistical calculations had become the foundation of epidemiology and chronic disease management by the 1970s, building on the research that had established the link between tobacco smoking and lung cancer.3 Although elements of these can be seen in the chapters in Part II, this chapter focuses more on the sociological concept and how it manifested in debates around the pertussis crisis. Studies of risk usually take three forms.4 First, they explore how societies have come to create, identify and manage new risks as they become more technologically advanced. Modern societies have created new hazards – things that can go wrong – with ever greater destructive power (e.g. the potential meltdown of a nuclear power plant). Regulatory frameworks manage the risk – the statistical likelihood that the hazard will actually occur – so that the benefits of these modern technologies outweigh the dangers.5 Second, risk studies look at the social and cultural conditions that make certain individuals or organisations prioritise certain risks over others. These approaches tend to focus on the meaning and social construction of risk, with a focus on decision-making processes and politics.6 Third, risk can be viewed through a Foucauldian lens. We can analyse how power identifies and manages risks through governance. Risks are managed by the state as well as being internalised by citizens.7 Together, these analyses stress the centrality of risk to modern states, especially since the early twentieth century. Thus, we can analyse not just what risks were identified but also how different societies focused on specific risks and how those were integrated into systems of governance.
This chapter does not seek to explain why parents chose to eschew whooping cough vaccination during the crisis. Instead, it puts the pertussis debate in context by showing how it was inherently tied up in wider public concerns over risk. These risks were partly to do with the vaccine. The medical deliberations over the relative risks of vaccine damage and infectious disease were clearly the catalyst for the crisis. More importantly, however, these debates were rooted in anxieties about the role of the welfare state. The most prominent discussions were over the provision of financial compensation to the victims of vaccine damage. This was a product of renewed political interest in groups whose risks of poverty had not been successfully managed by the 1948 welfare state.8 The public demanded protection from the risks of vaccine damage – that is to say, they wanted to prevent damage from happening and to have an adequate safety net for those who became disabled. But they also demanded protection from infectious disease, as evidenced by the queues outside clinics for vaccination when the epidemic broke out. Moreover, the levels of risk and the importance attached to them varied by constituency. This was a policy debate in which there were multiple actors, including parliamentarians, voluntary organisations, the medical profession, the DHSS, the Treasury and the press.
These concerns were an extension of a classic problem in decision making around vaccination: omission versus commission.9 A child who catches a disease when they have not been vaccinated can be said to be a victim of an ‘error of omission’. An act was not taken (whether deliberately or not), leading to an unwanted event. A child who suffers an allergic reaction to a vaccine may be a victim of an ‘error of commission’. This is the opposite of ‘omission’, since an action was deliberately taken.10 Parents and individuals tend to be better at rationalising acts of omission, where a negative event can be attributed more to chance than to an active, harmful decision on the part of the individual. As this chapter will show, this dilemma was present throughout the pertussis crisis. The potential negative outcomes (or hazards) to individual families of either brain damage or whooping cough were catastrophic. While medical experts debated the acceptable odds of these events happening (risk), the lay public found it difficult to find a clear answer.11 This debate was fuelled and reflected by the ample press coverage which the crisis received.12 But it was not just parents caught in this bind. As risks became both visible and manageable through technological change, certain obligations were placed upon individuals and organisations to manage them.13 For supporters of vaccination, parents were expected to vaccinate their children as part of their duty towards themselves and their fellow citizens (as seen in Chapter 1).14 For critics, the government's slow response meant that it had failed to manage the risks of either vaccine damage or infectious disease adequately. Neither omission nor commission alone would give the DHSS an easy policy option. The risks of continuing to use a vaccine that might prove to be dangerous were obvious. At the same time, doing nothing about the impending epidemic was also unacceptable.
This chapter explores these themes by outlining the key events of the pertussis crisis. It then focuses on the two main areas of debate. First, the passage of the Vaccine Damage Payments Act 1979 was predicated on the idea that individuals who were vaccinated for the good of society should be compensated for taking that risk if things went wrong. This argument was generally accepted by the major policy actors from an early stage. The second debate came over how likely vaccine damage was, especially in relation to the benefits of the pertussis vaccine. As doubts about the safety of the vaccine declined, new concerns arose over the likelihood of widespread whooping cough in a now under-vaccinated population. In both cases, the government came under sustained criticism for not taking decisive action to reduce doubt over the vaccine, thus increasing uncertainty and making it more difficult for parents to make the – by public health standards – correct decision. To conclude, the chapter explores another vaccination debate rooted in both the omission/commission dilemma and contemporary concerns over disability. Voluntary organisations had become concerned that the DHSS had not done enough to vaccinate against rubella, and thus prevent Congenital Rubella Syndrome. Although this was not as high profile as the pertussis crisis, it shows that the debates over risk were widespread in 1970s public health policy.
The pertussis crisis
Pertussis is an infectious disease that can lead to violent coughing, especially in children. Complications can include pneumonia and encephalitis. While only around 1 per cent of cases in the 1940s were fatal in Britain, the unpleasantness of the disease and its disproportionately damaging effect on children under the age of 2 years meant that parents had long feared it.15 It affected communities in epidemic cycles, meaning that national notifications tended to spike every two to three years.16 A vaccine against pertussis had been developed before the Second World War, but it was not until the 1950s that it became part of the routine childhood vaccination schedule in Britain. Despite this, many local authorities chose to administer it alongside diphtheria immunisation to take advantage of parents’ concerns about the disease before its national introduction in 1957.17 A large-scale MRC trial had confirmed both the effectiveness and the safety of the vaccine in 36,000 children.18 By the 1970s, the trivalent diphtheria-tetanus-whole-cell-pertussis vaccine (DTwP) was used routinely throughout the country, although separate diphtheria-tetanus (DT) and whole-cell pertussis vaccines were available.19 The whooping cough vaccine was successful. Pertussis morbidity dropped significantly over the 1960s, from an average of 122,000 cases (and 374 deaths) per year in the ten years ending 1956, to just 20,400 cases (and 24 deaths) per year for the ten years ending 1970 (Figure 4.1).20
Figure 4.1 Pertussis notifications, England and Wales, 1940–2005. After 2005, improvements in laboratory testing and notifications mean that data are not comparable. Source: Public Health England, ‘Table 6: Pertussis notifications and deaths, England and Wales: 1940–2014’ (5 May 2016). www.gov.uk/government/uploads/system/uploads/attachment_data/file/521438/Table_6_Pertussis_notifications_and_deaths__E_W__1940_-_2015.pdf (accessed 5 August 2017).
In 1974, doctors from Great Ormond Street Hospital published a paper claiming that there might be a link between the pertussis vaccine and brain damage.21 The resultant media attention and public debate saw a rapid reduction in the number of parents presenting their children for DTwP vaccination. Jeffrey Baker has described this crisis and its significance for public health as beginning around 1974 and ending in the mid-1980s, after the final court cases against the government brought by parents of children with brain injuries collapsed.22 He rightly argues that the crisis needs to be put into historical rather than simply epidemiological context. For public health professionals, the crisis – or the event which must be remembered and studied – is the drop in vaccination rates and subsequent rise in infections. It has become a lesson from history, and was referenced regularly during the later MMR crisis.23 Studies have therefore tended to focus on public attitudes towards the pertussis vaccine. While these were clearly important, we can learn more from extending our view of the crisis and putting it into the wider context of debates around the welfare state and the role of the government.
The risks of this brewing crisis can be separated into three broad issues. The first was the government's duty to protect the public from pertussis. Since it was now possible to manage the risk of infectious diseases through vaccination, public health authorities were obliged to do so.24 The second issue was protection from damage. If, as the Great Ormond Street doctors implied, there was a risk of damage from vaccines, then the government was failing in its obligation to provide a safe vaccine against pertussis. But it was a third issue that drove the majority of press coverage and public debate around pertussis vaccine: the government's responsibility to provide welfare support for those affected by failures in the first two policy areas. The 1960s and 1970s had seen extensive debate about and attention drawn to the increased risk of poverty associated with impairment and disability.25 The thalidomide scandal (in which a number of children were born with significant injuries due to the ingestion of the thalidomide drug by their mothers while they were pregnant) had recently resurfaced when it was shown that the British distributors had not paid adequate compensation to the victims.26 In the wake of this, the Conservative government of Edward Heath established the Family Fund to provide social security payments to families with ‘congenitally disabled children’, and the subject of medical negligence had been added to the remit of the Royal Commission on Civil Liability and Compensation for Personal Injury.27 In this environment, vaccine damage became a potential special case for additional compensation, especially if the health authorities could be shown to be at fault.28
For the government, then, these three issues required three different approaches. Its goal was to restore confidence in the pertussis vaccine and in the vaccination programme. First, it needed to establish that the vaccine was effective. Second, it needed to show that the vaccine was safe. And third, it needed to provide assurances that if any children were adversely affected they would receive adequate support. Each of these approaches became relatively more important than the others at different points of the crisis. At first, arguments about compensation dominated the popular press coverage and were the subject of much discussion in the medical press, Parliament and government departments. Once this principle had been accepted, the debate moved into a second phase, driven by fears that the anticipated 1978/79 epidemic would lead to unnecessary deaths because the government had allowed the vaccination rate to drop too far.
The basic principle of vaccine damage payments was accepted, with little opposition from a number of constituencies.29 The debates began to gain political traction in 1973. Two mothers, Rosemary Fox and Rene Lennon, were featured in the Birmingham Post. Their children, Helen and Joanne, had become disabled after vaccinations, and they called for parents with similar experiences to join a campaign for compensation for vaccine damage. The organisation that grew from this was the Association of Parents of Vaccine Damaged Children (APVDC).30 Fox and Lennon received letters from hundreds of parents, around two-thirds of whom blamed their children's impairment on pertussis vaccine. Despite their own children becoming disabled after the poliomyelitis vaccine, Fox chose to focus attention on this emerging potential scandal, amplifying it through interviews and media appearances.31 The APVDC drew on the sort of campaigning that had characterised the small but respected groups of the “poverty lobby” that had successfully convinced the Heath government to institute the first disability benefits.32 These organisations articulated the lived experience of their members through the growing mass media, allying it with sociological research and professional organisational structures to influence government policy. During the 1970s, at least, governments of both parties were receptive to such overtures, given that they both spoke the language of policy makers and exerted enough pressure on public opinion to make elected representatives take notice.33 APVDC in particular made allies with key parliamentary advocates such as the disability campaigner Jack Ashley, and quickly asserted its position. The two core aims were to ‘establish the reality of vaccine damage’ and to demand compensation for those affected.34 It argued that since the government recommended vaccination for the public good, the state should also provide for the individuals whose health was damaged in the pursuit of personal and herd immunity to infectious disease. Because the government's position was so dominant and even doctors (let alone parents) were often not fully informed of the potential risks of vaccination, there was a moral imperative for a compensation scheme within the public health or social security system.35 By basing these arguments on the existence rather than the extent of vaccine damage, the APVDC was in an advantageous position. It did not have to necessarily prove that vaccine damage was widespread, nor to concern itself with relative weightings of the risks of vaccination versus the disease itself. All that was required was proof that the hazard of vaccine damage was real, and that the number of cases in the country was above zero. The Royal Commission, Family Fund and general attitude towards the welfare state meant that the case for compensation was readily accepted. As the British Medical Journal argued soon after the APVDC was established:
The moral justification for compensation … is based on the social contract. National immunization programmes not only aim to protect the individual but also to protect society. … If individuals are asked to accept a risk (even a very small one) partly for the benefit of society then it seems equitable that society should compensate the victims of occasional unlucky mishaps.36
Enough stories had emerged in the media and medical press at this time to guide the APVDC's campaign and highlight both the risk and existence of vaccine injury. Although the mere existence of vaccine injury was enough for the moral argument, showing that there were a number of cases helped to turn this into a scandal which the press could parse as a news story.37 Drs J. V. T. Gosling and J. H. Moseley wrote to the Guardian weeks after the APVDC had been created, claiming that DTwP was not effective enough to be worth continuing and could cause brain damage.38 George Dick, the member of the JCVI who had been cautious over oral polio and smallpox vaccines, also alleged that up to eighty cases of brain damage could be caused by pertussis vaccine each year.39 Then, more forcefully, the Great Ormond Street doctors M. Kulenkampff, J. S. Schwartzman and J. Wilson published their case studies in Archives of Disease in Childhood.40 After this point, concerns with DTwP appeared credible, even if they were not completely provable or supported by medical consensus. Parliament became interested in the story, and backbenchers from both major parties tabled a number of questions and Early Day Motions calling for inquiries into the vaccine and support for the potential victims.41 Doctors were, according to Fox, worried that they might have another ‘thalidomide episode’ on their hands.42
The APVDC may have borrowed from the disability poverty lobby in its demands for compensation, but its arguments also resonated with the growing consumer rights movement around health in the 1970s.43 It was telling that the Consumers’ Association lent its support to compensation while still recommending that vaccines were a safe and effective choice for parents wishing to protect their children. The issue surrounded informed consent, with the implication both from supporters and critics of the vaccination programme that parents were capable of making the right choices.44 When select cases were presented to the Parliamentary Commissioner Sir Idwal Pugh, the final report did not make judgements on the statistical risk or causation of vaccine damage. Instead, it found that the British health departments had ‘failed to make available to parents all the information that they should have taken into account’ and that doctors appeared to have been poorly advised about the contra-indications that meant children should not be immunised against pertussis.45 Advice was sent out to doctors to re-emphasise the need to check for contra-indications – a direct way of managing the risk of vaccine damage by further decreasing the likelihood that a susceptible person would be vaccinated.46
The DHSS accepted the argument that financial payments to vaccine-damaged children should happen, and began to make preparations. The only questions were about how to make the scheme affordable, how to make it acceptable to the Treasury and how to try to head off potential claims from other special-case groups that could potentially unbalance the social security system.47 The government slowed down the process by referring the issue to the Royal Commission on Civil Liability and Compensation for Personal Injury. Yet the DHSS also knew that it had to be seen to be doing something, and repeatedly promised that vaccine-damage payments would be enacted as soon as practically possible. ‘Political considerations favour an early announcement’, Labour Secretary of State for Social Services David Ennals told the Cabinet, lest the administration undermine its reputation ‘as a caring government’.48 It was not just a moral exercise, however. Restoring confidence in the vaccination programme by providing a safety net for the few affected by vaccine damage was ‘vital … especially because of an outbreak of poliomyelitis this summer – an event for which many people would lay responsibility at the Government's door’.49 To show that they accepted the principle of compensation, an exchange of correspondence was engineered between Prime Minister James Callaghan and the chair of the Commission, Lord (Colin) Pearson, confirming that it would consider vaccine injury and was very likely to recommend a payment scheme.50 When the report was published in March 1978 it concluded that ‘there is a special case for paying compensation for vaccine damage where vaccination is … undertaken to protect the community’.51 Legislation to enact Vaccine Damage Payments went through Parliament quickly, with no opposition, weeks before the vote of no confidence in Prime Minister Callaghan and the subsequent 1979 General Election.52
Despite expansions of pension and disability provision under the previous Prime Minister, Harold Wilson, and Secretary of State for Social Services Barbara Castle (both in office 1974–76), Callaghan's premiership was marked by restrictions in spending following the 1973 oil crisis and subsequent loan from the International Monetary Fund in 1976.53 That the Vaccine Damage Payments Bill 1979 could be passed so quickly said much both about attitudes towards compensation for supposed victims and about the low number of potential claimants. It also demonstrated how seriously the government considered the consequences of a critical lack of confidence in the vaccination programme. The legislation was passed not because vaccine damage was a common occurrence but because the hazard of vaccine damage had become politically unacceptable to multiple constituencies. On the population level, the financial and political benefits of protecting the population from pertussis vastly outweighed the risk of damage in a limited number of children.54 From a clinical and administrative point of view, then, the advantages and moral imperative to provide support could be justified on the relatively low financial cost of such a scheme – one that was additionally kept low by strict qualification criteria and payment levels that were generally considered to be somewhat parsimonious.55 For the public, considerations about the real or statistical risk were not so important. The question was a moral one, based on the way that debates about the role of the welfare state had emphasised and prioritised certain risks over others.
In 1977, the general principle of and preparations for a damage payment scheme had been established. This was aided by the general acceptance of the argument that vaccination worked – that is to say, that it was safe for the vast majority of people and was clearly a technology that protected children and the wider public from deadly diseases. This vaccination narrative had never truly been broken, and while the negative publicity around pertussis vaccination had seen a dramatic fall in the uptake of DTwP vaccination, the uptake of immunisation against diphtheria and tetanus remained relatively robust. This suggested that many parents and doctors had decided to make alternative arrangements to ensure that children were otherwise fully immunised.56 Once the principle of vaccine payments had been accepted, attention turned towards the danger posed by pertussis itself.
The publicity surrounding the compensation debate had clearly affected parents’ confidence in the vaccine (as would also be seen with MMR – Chapter 5). This was reflected most notably in the decline in the pertussis vaccination rate. Criticism of the government's slow progress on compensation payments was largely replaced by concerns that the DHSS was working too slowly to re-establish the vaccination programme.57 It had commissioned the JCVI and Committee on the Safety of Medicines (CSM) to investigate the science surrounding DTwP, but scheduled arrival of the final results was too late to stop a potential epidemic in the winter of 1978/79.58 Fox and Ashley regularly had to defend their campaign against accusations of scaremongering and “anti-vaccine” sentiment. While they protested this point, they became useful targets in a new narrative that was being built around the pertussis story.59 Too much anxiety had been caused by talk of damage, and now there would be a new group of victims – those who would otherwise have been immunised.
Majority medical opinion had consistently extolled the virtues of DTwP and the safety of the pertussis component.60 However, while publicity about the possibility of brain damage remained, the government felt that it had to be cautious. Thalidomide and other medical tragedies had shown that medical opinion could be wrong. Despite the much more robust and long-term testing on pertussis vaccine than on thalidomide before its widespread use, the potential political fall-out could be catastrophic if the government was mistaken. Thus, much as the hazard of vaccine damage was central to the APVDC's argument, the risk that safety-testing procedures might have failed loomed over the DTwP programme. This reflected the traditional caution showed by the British government and medical establishment with regard to immunisation technology. Like BCG, the whole-cell pertussis vaccine had been developed in the 1920s, but it was not used on a national scale in Britain until the 1950s.61 In the 1970s, the concern was that if pertussis vaccine was shown to be unsafe, the lack of faith shown in it would spread to other parts of what, up to that point, had been a successful vaccination programme.62 Gordon Stewart, Professor of Public Health at Glasgow University, made these points repeatedly during the 1970s and 1980s and was a key ally in the case being made by the APVDC against the government in Parliament, in the European Court of Human Rights and in subsequent lawsuits during the 1980s.63 As a professor with an air of authority and an ability to give the press a good quotation, he maintained an air of doubt in the public mind throughout the 1970s.64 Over-publicising pertussis vaccination during a time of crisis was therefore thought to be unwise, as it might draw attention to the debate; but without a publicity programme, reinforcing messages about the need for and safety of the vaccine would leave many children unprotected. The Secretary of State, David Ennals, eventually chose to run a national campaign, but ran into problems in doing so.
The DHSS asked medical advisers from the JCVI and the CSM to produce a report on the safety and efficacy of pertussis vaccine. This, it was hoped, would re-establish the vaccine's legitimacy by means of concrete medical statistics and expertise; it also allowed the DHSS to delay making a firm decision on DTwP, as it could argue that it was awaiting scientific confirmation. An interim report came from the JCVI in 1977, while the full details of the investigation were released in 1981.65 However, the advice to the Secretary of State was not unanimous, and made it difficult to begin a campaign in 1977. The JCVI, whose responsibility was to advise on vaccination policy, firmly believed that the evidence of harm was slight and the evidence in favour of the efficacy of the vaccine was indisputable. The JCVI's data also suggested that an epidemic would occur in 1978/79, and that many more children would be infected due to years of under-immunisation.66 The CSM, whose responsibility was to ensure that drugs were safe and used in an appropriate manner, wanted to wait until the full results of safety testing were available. While the causation relationship between pertussis vaccine and brain damage was very difficult to prove, it was also impossible to disprove (or at least show that there was no evidence for it) until a full investigation had been completed.67 Once the Vaccine Damage Payments Bill had been used to ‘mollify’ the APVDC's campaign, however, the government as a whole became more willing to promote DTwP in the light of growing evidence that the vaccine was indeed safe and effective.68 The risk of the anticipated epidemic and possible damage to other areas of the vaccination programme far outweighed the likelihood that the campaign would face a negative reaction from anxious parents. Adverts were placed in major daily newspapers outlining the risks and benefits of vaccination. The emphasis was on choice, but with a clear message that the most logical choice was to have one's child vaccinated. ‘Vaccination protects’, explained the headline. ‘These facts will help you make your decision – but your doctor is there to advise you.’ While no exact figure was given for vaccination injuries (either as a percentage of all vaccines or as an absolute), the full-page advertisement quoted the decrease in morbidity of pertussis and diphtheria since the vaccination programmes against the diseases began.69 It marked a distinct change in tone from the diphtheria and smallpox campaigns described in Chapters 1 and 2. Rather than focusing on the potential catastrophic consequences of failing to follow government advice, the adverts were presented as more sober reflections on the benefits of vaccination over the risk of catching the diseases against which they protected.
With the campaign running and the Vaccine Damage Payments Bill going through Parliament, the bulk of negative media coverage was now over. Some areas saw a large increase in demand, causing supply shortages of the pertussis vaccine reminiscent of the strains put on poliomyelitis vaccine supplies during the Jeff Hall incident and the outbreak in Liverpool.70 Doubts about whole-cell pertussis vaccine did not disappear entirely. Court cases against the DHSS with regard to pertussis vaccine damage occasionally surfaced in the 1980s, although negligence was never proved and vaccination rates recovered.71 Outbreaks in 1982 and 1986 showed that pertussis was still a threat, but 1990 was the last year in which there were over 10,000 cases.72 What this entire episode had exposed was that the government's protection role was complex, and public attitudes towards vaccination were not straightforward. Both the government and parents juggled multiple risks, weighing up their relative importance based on a range of factors. Parents appeared to avoid DTwP, but were able and willing to have their children immunised with DT. The press shifted its focus from the risks of damage without compensation to the risks to a population without adequate immunisation coverage. Medical advisers produced conflicting advice depending on their remit and specialisation – from the JCVI, which became most concerned with the risk of an infectious disease outbreak to the CSM, which was preoccupied with the risk of vaccine damage. The medical profession focused on statistics regarding safety and efficacy, advocating widespread use of DTwP to stave off pertussis outbreaks, yet paying close attention to contra-indications so as to manage the risk of vaccine damage. Voluntary organisations concerned themselves with the financial and social risks to all vaccine-damaged children, regardless of how many or few there were.
At the same time as this public debate surrounding vaccine damage, a lower-profile argument was brewing between the DHSS and voluntary organisations. The APVDC's compensation campaign had gained political traction by emphasising the problems associated with uncompensated disability and the government's inability to recognise the specific needs of children damaged as a direct result of government policy. Another disease also carried with it the potential for disability. In this case the issue was not that the government could cause disability by commission; rather, while a vaccine existed but was not widely administered to at-risk groups, the government could allow disability to occur through omission.
In 1978 there was a rubella epidemic across Britain. In itself, this was not considered to be a great problem. Rubella (or German measles) is a mostly harmless childhood disease. It causes a rash, mild fever and swollen glands. Although in rare cases it can cause complications, symptoms can be so mild that many people catch it and do not realise that they have been infected. However, rubella can be dangerous in pregnant women. It can lead to Congenital Rubella Syndrome (CRS), which can cause blindness, deafness and problems in the functioning of key organs such as the brain and the heart in new-borns.73 Such were the risks that it was standard practice to recommend termination to women who contracted rubella in early pregnancy. To combat CRS, the government began the routine vaccination of teenage girls in schools in 1970, so that gradually the cohort of child-bearing women would be fully protected from rubella.74 Women were also offered the vaccine, but they had to undergo blood tests to determine whether or not they were immune to the disease beforehand. Since there was a risk of damage to the foetus if a woman became pregnant within three months of being vaccinated, authorities did not want to risk vaccinating women who would not directly benefit. Because of the inconvenience of this testing system, it was less common for non-school-age girls to be vaccinated.75 The 1978 epidemic therefore came too soon for the programme to achieve a high degree of coverage. The first group of girls to be vaccinated would have been around 21 years old in 1978, leaving the majority of fertile women unprotected and therefore potentially at risk of their babies developing CRS. It would be an exaggeration to call this debate a crisis, since it gained nowhere near the public attention of damage payments and pertussis. Yet it was significant, and worrying enough to force the DHSS into action.
The Spastics Society and the National Association for Deaf/Blind and Rubella Children (NADBRC) both had an interest in preventing CRS. Both were charities established in the 1950s to provide services for disabled people. The latter submitted evidence to the Royal Commission's chapter on ante-natal injury in 1975, arguing for a compensation scheme similar to that for the thalidomide children and (later) vaccine-damaged children.76 Along with the children's committee of the Central Health Services Council, they urged the government to embark on a campaign of mass immunisation of young women to improve protection against the disease. On the current policy of focusing on vaccinating only in schools, it would take until the end of the century to fully immunise all females who might go on to bear children.77 The DHSS also wanted to increase the population of immune women, but there were barriers to mass immunisation. First, the goal of the programme was not to eliminate rubella, as was the case with other diseases; it was to prevent pregnant women from becoming infected. Thus, the target population was only teenage girls and women of child-bearing age rather than the entire public. Second, the mass vaccination of all females in the target population could exacerbate the problem. Women were advised not to get pregnant within three months of receiving the vaccine. A mass programme would, of course, vaccinate more women – meaning that there was an increased chance of vaccinating pregnant or soon-to-be-pregnant women. This would lead to an increase in abortions and/or children born with CRS. Such a risk would have been politically damaging both to the reputation of vaccination programmes in general and to the government's electoral chances, given the sensitivity around the subject of abortion. This was closely related to a third problem, the pertussis vaccine crisis. Any attempts to run a mass advertising campaign while doubts had been expressed about other parts of the programme and while the DHSS was still uncertain about its publicity efforts was politically challenging.78
As with pertussis, the DHSS took the JCVI's advice that it should intensify the anti-CRS campaign, but that it should do so by getting local Area Health Authorities to work with women, rather than through a ‘crash’ national campaign.79 Implementation was delayed by the general election, but the plans were carried through by the new Thatcher administration in June 1979.80 As an interim measure, the government tried to ensure that immunisation rates remained as high as possible among school girls by distributing information leaflets through the Health Education Council in November 1978.81 The DHSS also made a concerted effort to target immigrant communities where the rates of rubella were known to be higher and potential mothers were much less likely to have come through the school system or to have been in contact with health services before and during the early stages of pregnancy. Advertisements were placed in Urdu, Hindi and Punjabi newspapers read by the South Asian diaspora in Britain, urging women to visit their local health centre and ask about rubella vaccination.82
These developments came too late for the Spastics Society led by General Secretary James Loring. Frustrated at the slow progress made by the JCVI and the DHSS, in November 1978 the Society ran its own campaign to increase the number of women presenting for vaccination. It had been approached by parents worried by recent media coverage about the rubella epidemic and increased risk of CRS, and wrote to the Minister of State (Health) Roland Moyle to tell him that it would launch a campaign if the DHSS did not already have one planned to start soon. It accused the government of ‘gross neglect’.83 Its newspaper advert led with the headline ‘Urgent Warning – German Measles can damage your unborn baby’, before encouraging women to present for testing and possible vaccination.84 Backed by prominent London Labour politician Peggy Jay, this form of activism caused frustration for the Chief Medical Officer, Sir Henry Yellowlees.
Any campaign by the Spastics Society would be premature and embarrassing. … Overworked staff in the Department are trying their best to prepare for the extension [to rubella vaccination] … At present, this work is being held up while the staff deal with approaches from Mrs Peggy Jay and from the Spastics Society to several different parts of the Department and now to Ministers.85
Neither the DHSS nor the BMA was concerned about a lack of vaccine supply (unless there was an unprecedented surge in demand). They were worried about the blood testing service's ability to cope with the screening required before giving women the vaccine.86 Since the government planned to begin its own publicity programme over the coming months, the Spastics Society's approach could create a large-scale advertising campaign that the JCVI had been keen to avoid.87 There was also a high risk of misinformation. The Society reported a positive response to its campaign from family planning centres, with requests for reprints of its press advertisements and other material. Yet it also received complaints from women who were told by their general practitioners that the vaccine was not necessary or were given conflicting advice about how long after vaccination they should avoid pregnancy. As with pertussis, the argument was that a lack of education on the part of doctors, rather than the public, was an impediment to good protection. Loring wrote to the Secretary of State:
It appears that the public when given the facts is willing to act responsibly to protect their health, but this action cannot be successful if doctors are not fully aware of the correct procedures and the advice that they should be giving.88
The annotations made by a DHSS civil servant on a copy of Loring's letter suggest that some of these criticisms appeared to be out of context. Nonetheless, the lack of a harmonised government campaign, including education for the public and for medical professionals, appeared to bear out the BMA's and Yellowlees’ concerns. The risks of CRS needed to be managed through central coordination, as the vaccination programme included more than simply the availability of vaccine. Organised public activism of the type being pushed by the Spastics Society could, as far as the DHSS was concerned, cause a different set of issues around public confidence in the system. It may well have been that the only material difference between the Society and the Department was over timing;89 but, as the Minister was advised to answer on the radio in the event of being asked why the campaign was not launched sooner:
You know, I am beginning to think we are wrong whatever we do. It is, for example, the case that, towards the end of last year, the Faculty of Community Medicine warned the Department against having a rubella vaccination campaign because of the attitude of the public which, at the time, was against vaccination generally.90
The epidemic appeared to have brought attention to CRS and increased demand for rubella vaccination – but from and for whom? The campaign being led by the Spastics Society touched on an area that the DHSS was acting upon following advice from the Central Health Services Council and the JCVI. For the most part, debate in the medical community appears to have focused on how best to improve uptake and efficiency of vaccination in women, although some argued that universal routine childhood vaccination would help to eliminate the disease entirely, rather than simply immunising individuals to prevent CRS.91 NADBRC and the Spastics Society were both what the disability rights movement would call traditional charities, often staffed and run by middle-class people concerned with the medical aspects of impairment rather than with tackling structural inequalities that made discrimination against disabled people worse.92 Class had shown itself to be a factor in rubella immunisation before. Girls in private schools, for instance, had been shown to be far less likely to get the vaccine than those from state schools.93 Now, one DHSS civil servant wondered, were the women writing to the Spastics Society becoming concerned because of reports in the Sunday Times? If so, ‘it will be interesting to see the response of the “Mail” and “Express” readership’.94
As with vaccine damage, it is striking how relatively few people were potentially at risk of disability. In 1975, NADBRC claimed a membership of 424, representing some 196 deaf/blind people.95 Similarly, the APVDC told Lord Pearson that it had amassed 356 cases of serious vaccine damage.96 This was not a problem on the scale of poliomyelitis in the 1950s or diphtheria in the 1940s. It was about a smaller number of people in serious need, made visible by campaigning for expanded welfare state provision, and the relative importance of these cases now that other serious infectious diseases had been reduced to negligible levels. As the state's duty to protect and care for serious disability increased, the need to reduce the risk of the onset of serious impairment also rose. Long-term health problems were becoming the main focus of health systems during this period of the twentieth century, and the Labour government had given much thought to how preventative medicine could reduce the burden on welfare services.97 Vaccination had a role to play in this epidemiological transition. Even though the DHSS could not provide the Treasury with an exact cost-to-benefit figure, from 1971 to 1974 there were, on average, forty-two cases of CRS per year and 801 terminations.98 The expanded anti-rubella programme was therefore ‘highly desirable … both in terms of the avoidance of human suffering and of savings to the health and social services’.99
The rubella vaccination debate might not have become a public crisis on the level of pertussis, but it did reflect certain sections of the public demanding protection from the government in the form of increased vaccination coverage. For financial and moral reasons, the government broadly accepted its obligation to manage this risk, although there were disagreements about how quickly and to what extent such protection should be offered. We must be cautious about arguing that the Spastics Society and NADBRC were representative of the general public. They did, however, show wider concerns about the role of the government and the welfare state in protecting people against the risks of disability that were seen in other areas of policy. When we look at the drop in the number of CRS cases and terminations, attempts to improve coverage did broadly work. In the four years up to the introduction MMR in 1988, there were an average of twenty-two cases a year and seventy-three terminations.100
In 1978, Michael Church of the Health Education Council wrote to the British Medical Journal calling for ‘an index of health risks, meaningfully related and straightforwardly stated’. Quoting the recent lecture by Lord Rothschild on broadcast on BBC1, he proclaimed that ‘there is no such thing as a risk-free society’. ‘What we need’ is ‘some guidance as to when to flap and when not’.101 Both pertussis and rubella vaccination policy, however, showed that “flapping” depended on the constituency and the information available. The risk of vaccine damage to any one person in the population may have been slight, but the consequences for the family that became affected were total.102 CRS and vaccine damage were small-scale problems in terms of the gross numbers affected, but the difficulties faced by those affected compelled the government to demonstrate that it was able to offer protection for these groups.
To say that the pertussis vaccine crisis constituted a crisis of faith in vaccination is too simplistic. The contemporary campaigns for rubella immunisation, as well as the shift in tone of the press towards providing adequate levels of whooping cough vaccination demonstrate that the vaccination narrative was alive and well. Rather, for a brief period, segments of the public lost faith in the government's ability to manage risk. Once the safety of the vaccine had been re-asserted and a damage payments scheme had been promised, immunisation rates began to recover and the overall programme was kept intact. The crisis must therefore be understood within the wider context of anxieties over the role of the welfare state in the late 1970s. The financial crisis had led to political debates about what financial protections the state could offer through social security, a fully funded health service and so on. Public health was not isolated from such matters. Both pertussis and rubella vaccination were part of the state's role as protector of the nation's health both from infectious disease and from medical neglect. The DHSS had to address the concerns of parents over vaccine damage while providing a comprehensive vaccination programme backed by high immunisation rates. Collective risks of infectious disease were weighed against the individual risks of disability. Throughout, it received conflicting messages from parliamentarians, different expert groups, medical advisers and the public (whose voice was refracted through the press and voluntary organisations).
The pertussis crisis is now used as a “lesson from history” by public health professionals. It is seen as a good example of how a mature vaccination programme in a high-income setting can undergo a loss in public confidence. Similar incidents in Japan, the United States and elsewhere have shown how individual vaccines can be doubted at times, while national vaccination systems remain largely robust.103 Global public health research now monitors and theorises vaccine confidence and vaccine hesitancy to try to anticipate and avoid such problems.104 In the United Kingdom context, the pertussis vaccine crisis became a guiding example in the management of a crisis which was not adequately anticipated – MMR.