Feature

Getting the needle

For most parents childhood immunisation means battles with upset children — but for others the battle with angry health professionals comes first. Anne Rogers has been talking to the refuseniks

Whatever the political conflict over the funding and provision of health care in Britain, there appears to be a consensus about the desirability of a programme of mass childhood immunisation. Health professionals, promoters and the main political parties are unanimously in favour of extending the coverage of childhood immunisation. Under the government health care reforms of 1990, backed by financial incentives, GPs are expected to achieve coverage targets of 90 per cent and at the last general election the Labour Party made increasing immunisation uptake a key policy goal.

One doesn’t have to look far to understand the reasons for this consensus. For the Left, the mass immunisation programme represents a collective endeavour to eradicate childhood disease. In particular, immunisation promises to protect children from poorer families who are most at risk from severe disability or death from disease. For the Right it seems to offer a cost-effective panacea from which it can make positive political capital in the face of continual bad news about other health targets and provision. It also conveniently negates the necessity of taking other costly measures to promote child health. Preventing childhood accidents for example — which is the biggest threat to child health — would require an examination and amelioration of dangerous environments.

Leaving aside ideological positions about health and disease, who could be opposed to a simple preventative measure which not only promises to protect one’s own children from killer diseases but allows citizens to exercise their moral duty and feel good by protecting other children? According to the public health literature only the feckless, members of weird religious sects, and those who don’t have adequate access to services (travellers and ethnic minority groups are singled out for special mention). Official accounts claim there are (with the exception of a minuscule proportion of children where there is a contra-indication such as an immediate family history of fits) no rational reasons for refusing immunisation.

But this view has been challenged by the results of a recent study which suggests there is a small but significant group of well-educated parents who refuse immunisation for very good ‘rational’ reasons. Personal accounts taken from parents revealed a complex rationale, sometimes held in the face of considerable pressure from preventative and primary health care agencies, for refusing to enter or continue with the immunisation programme.

First, there was the influence of alternative medicine, and in particular homeopathic ideas about natural immunity. The introduction of artificial immunity via vaccination was viewed with suspicion because it was seen as using a hammer to crack a nut: ‘If you inject something into the blood stream it doesn’t go through the normal sort of defence mechanisms of the body.’ In opposition to the notion of ‘herd’ immunity, catching some childhood diseases such as measles, mumps and rubella was seen as important in protecting a child’s health. As one parent said, ‘it is important to have children who catch these diseases naturally and get over them naturally’. The threat to natural immunity posed by artificial immunity was often linked in parental accounts to susceptibility to auto-immune problems (such as cancer and HIV) later in life. Homeopaths were seen to offer alternative preventative protection in the form of remedies which, unlike vaccines, were free of side-effects.

A second influencing factor was the commitment to a philosophy of ‘healthism’. This presents something of a paradox in terms of preventative health strategies. Many of the respondents were paragons of virtue in their attempts at positive health promotion. Most had adhered slavishly to long periods of breast feeding, went out of their way to provide a healthy diet in terms of providing copious amounts of (often organic) fresh fruit and vegetables in their children’s diet, believed strongly in the virtues of exercise and providing a loving environment to enable positive child-development. Most held holistic views of health and saw themselves as responsible for promoting health-enhancing attitudes and behaviours. It is perhaps not surprising that passive acceptance of an invasive medical technique such as immunisation clashed with their adoption of self-initiated, active health-promoting behaviour.

More generally, there was scepticism of the medical position on immunisation. Doubt was cast over orthodox medicine’s claims about the efficacy of vaccines. This was illustrated by dismissal of the theory of ‘herd immunity’ as illustrated by this response to the interviewer’s question:

Q. ‘What about the argument that immunisation is a collective issue and that by not having your child vaccinated you may be making other people’s children vulnerable to disease?’

A. ‘Well if they have been immunised they shouldn’t be vulnerable to it should they? No I don’t see that we are putting everybody else at risk.’

Ironically perhaps, exposure to and familiarity with the ideas of social medicine seems to be at least partly responsible for a distrust of conventional medicine. For example, dissenting parents referred to works by McKeown and Dubos in discussing their adherence to the idea that social conditions and public health measures rather than immunisation have been primarily responsible for reducing the mortality and morbidity of infectious disease.

Concern about side-effects was another factor in parents’ decisions. There were three ways in which side-effects were identified as important. Parents reported side-effects as going beyond the ‘mild’ symptoms they were warned about, especially where children were perceived (by parents but not official guidelines) as being vulnerable: ‘Immunisation for some children is perhaps not the best thing, especially if you have got catarrhy, ezcema-prone, highly allergic children.’ Immunisation was often seen as triggering the development of these types of childhood ailments. Reported side-effects from other parents were also important in formulating a view about immunisation, as were concerns about the long-term side-effects, which included the consequences of contracting diseases in adulthood once artificial immunity wears off.

The experience of working with children and/or the medical profession was sometimes important in developing reservations. For example, one parent who was a social worker said that she had seen a number of children who were severely brain damaged as a result of the measles vaccine. When asked about the causal connection she said this had been intimated in the medical notes. Working closely with the medical profession seemed to affect parents in terms of trusting medical judgement. One mother mentioned she did not trust doctors’ opinions over vaccines because they tended to express certainty in areas which were uncertain.

In terms of internal family agendas about immunisation, a history of non-compliance in the family was at times transmitted from generation to generation. Other respondents reported reacting against parents who they saw as over-reliant on medicine and indulging in unhealthy behaviour. Memories of childhood episodes of measles from which family members recovered quickly also tended to engender a disbelief about measles as a dangerous disease.

Finally, recent changes in the immunisation schedule towards immunising babies younger seemed to put some mothers off. Apart from concerns about the vulnerability of tiny babies, mothers also expressed concerns about their own vulnerability after the birth in terms of being exploited to health professionals to gain compliance.

How then did health professionals react to this set of complex reasons for refusing immunisation? Often, it seems, like a bull in a china shop. Parents reported being pressurised by health professionals in a number of ways. This ranged from presumptuous attitudes that vaccination would occur on visits to child health clinics even in the face of parental opposition, to health visitors and others using moralistic arguments and scare tactics about what would happen if immunisation was not taken up. Parents reported heavy dissatisfaction with patronising and emotive health education literature that provided little in the way of useful information.

Of most concern to those who believe in a universal and comprehensive health service, free at the point of need, is the knock-on effect in use of primary health care more generally. Some dissenting parents, confronted with coercive practices and unsympathetic health professionals, opted out of using child health services. Some, for example, sought the services of independent midwives for subsequent pregnancies to avoid NHS services or relied on alternative medicine for which they had to pay.

More worrying still were reports of people being kicked off GPs’ lists for refusing to take up immunisation. One woman reported giving birth at home without medical cover because she was thrown off one GP’s list and no-one else in the locality would take her on. How common such practices are is difficult to know, but that they exist is undeniable. Such action may be influenced by government incentive payments but also reflects an intolerance of dissenting views from parents and a disregard of users’ views in general.

The civil liberties and other issues thrown up by this research suggest that an informed debate and radical rethink about the politics and ethics of the mass childhood immunisation programme is long overdue.