The recent spike in measles cases in Swansea and elsewhere has a particular salience for local government, occurring just as authorities took on new responsibilities for public health. Events in Swansea brought back into public attention the decline in uptake of the MMR (Measles, Mumps, Rubella) vaccine that followed a spate of media stories several years ago reporting an apparent link to autism. Despite the thorough discrediting of the link, MMR take-up rates have not recovered.
Declining rates of vaccination are not a UK-phenomenon and cannot wholly be laid at the door of a single rogue study. Research that I have been doing with Anat Gofen from Hebrew University in Jerusalem has highlighted that vaccination rates are dropping across western democracies. Often, in each country, the decline will be associated with a particular vaccine and a set of commonly circulating myths surrounding it. In the US, for example, it has been a rise in cases of whooping cough that has provoked most concern.
Whilst vaccine take-up rates have always been low within some disadvantaged communities, what has grown is the prevalence of parents practicing a form of so-called ‘scientific citizenship’, in which they research issues for themselves, make use of official and oppositional websites, and weigh the perceived risks. They may opt to delay the jabs until a child is older or to split combined vaccines into separate shots rather than not vaccinate at all. If they decide not to proceed with vaccination, they will find an online community of fellow resistors with whom to share stories and provide support.
What has this got to do with personal budgets in social care services? In both cases, citizens are challenging conventional notions of professional expertise and authority, and making a claim to know what is best for them and their families.
The two cases have many dissimilarities: accepting that older people and people with disabilities know best about their immediate care needs and should have choice and control about how they spend their time is clearly very different from accepting that parents know best about a medical intervention like vaccination. Personal budgets have been the culmination of many years of campaigning by disability organisations for recognition that the person using services is an “expert on their own life” and has widespread support in government and civil society. Vaccine refusal is a widely criticised activity with dangerous consequences for public health.
However for health and social care professionals on the frontlines, navigating the boundaries of citizen expertise is a growing challenge. With personal budgets expanding into the NHS as personal health budgets, it is no longer assumed that health interventions should always be determined on the basis of a traditional clinical evidence base. Like ‘expert patient’ programs, health budgets have been principally targeted at people with chronic conditions which require self-management and enable them to develop knowledge over the long-term. Other areas of health, such as vaccination, remain off limits.
However, citizens themselves may not accept this demarcation. Declining vaccination rates highlight the difficulties that officials face in attempting to ‘hold the line’, encouraging citizen expertise in some sectors of health and care whilst denying it in others. There are challenges for practitioners in explaining why you can be an expert patient but not an expert parent.
Catherine Needham is a Senior Lecturer at the Health Services Management Centre, University of Birmingham, and is developing research around public service reform and policy innovation. Her recent work has focused on co-production and personalization, examining how those approaches are interpreted and applied in frontline practice. Her most recent book, public by the Policy Press in 2011, is entitled, Personalising Public Services: Understanding the Personalisation Narrative.