Personalisation in healthcare and adult social care: between marketisation and social justice
On the 1st September, 2015 the front page of The Times read ‘NHS treats patients to holidays and video games’, while The Mirror ran the headline ‘NHS buys patient a summer house’. These stories refer to the growing use of ‘personal budgets’ in health and adult social care services, and to the wider trend towards ‘personalisation’. Personalisation is a key term in contemporary social policy in the UK. The term designates a policy reform intended to make services more responsive to the needs and preferences of individual users, by giving them greater choice of the form and content of the services they receive instead of having to comply with traditional, one-size-fits-all, standardised mechanisms of provision. Personal budgets are a prominent form of ‘deep’ personalisation that has become increasingly prevalent in both the health and adult social care sectors. In the context of social care, the Department for Work and Pensions has revealed an increased use of personal budgets, with 62% of users of community based services and carers receiving a personal budget in 2013-14, up from 56% in 2012-13 and 43% in 2011-12. So far, the take up of personal health budgets in the NHS has been comparatively lower, but since October 2014 all patients eligible for continuing healthcare from the NHS, such as those with long-term or chronic conditions, have had a right to a personal health budget. Currently, over fifteen million people have at least one long-term condition in England alone, with this figure expected to rise to over eighteen million within ten years. Accordingly, plans for managing the growth of personal health budgets have assumed a ‘rapid growth in demand’.
In this analysis, we set sensationalist headlines about the use of personal budgets aside and concentrate on the tension between two distinct aspects of personalisation – its claims to promote social justice and its commitment to marketisation.
Personalisation promises social justice in at least two senses. First, by liberating service users from top-down, paternalistic control and by recognising their individual differences, thereby enhancing their autonomy. Respect for service users’ autonomy has been a central element of disability rights campaigners’ calls for a more socially just system of social care, and it is also a core concern in relation to healthcare. Second, personalisation is seen as offering greater equality, especially where reforms are presented as a means of making access to choice more equitable across socio-economic strata.
However, personalisation also promises economic efficiency through marketisation. The idea is that the introduction of ‘consumer’ choice will increase the ‘value for money’ of services by generating competition between service providers. We suggest that in personalisation reform in the UK the agenda of marketisation has overridden the agenda of social justice. This displacement of social justice by marketisation has been facilitated by post-2008 austerity, and has itself also facilitated austerity because personalisation’s proposals for enhancing market-based competition in service provision have helped to legitimise welfare state retrenchment.
Personalisation in adult social care
Since 2010, local authorities have seen unprecedented cuts in the funding available for social care. Over the years 2010-2015 the budget of the Department for Communities and Local Government has been cut by 51% in real terms, the largest percentage cut suffered by any department. In the same period, government funding for local authorities was cut by 40% in real terms. In 2015, the government closed the Independent Living Fund (ILF), a public body that was responsible for providing money directly to disabled people with high-support needs to enable them to employ personal assistants. From 1 July 2015, responsibility for supporting the users of the ILF in England was transferred to local authorities, but funding for this has not been ring-fenced. More recently the (failed) attempt to retrench the Personal Independence Payment that led to the resignation of the former Work and Pensions Secretary, Iain Duncan Smith, provides a further example of the way austerity has encroached on the services and support provided to disabled people. Many disability organisations have campaigned against these cuts on the grounds of defending social justice.
The strategy of personalisation of adult social care has coincided with this wave of austerity measures. As several policy analysts have reported, personalisation reform has been used to advance the agenda of austerity. In a study of personalisation in one local authority in England, Karen West concluded that:
the Council sought to pass the “new offer” [advancing austerity] off as part of a transformation programme, strongly connoted with personalization as liberation and empowerment and signifying dignity and self-actualization for social care users (West, 2013: 643).
Another study by Catherine Needham in England presented similar concerns:
There was a sense in the interviews that the popularity of personalization as a policy approach was being used to offer political cover for service changes which were more about cutting budgets than about enhancing choice and control. As one policy consultant put it, ‘Local authorities that are cutting everything, that have massive budget issues, use personalization and individual budgets to justify anything that they want to do’. (Needham, 2011: 63)
Within disability studies and among disability activists, personalisation has been strongly associated with advocacy for Independent Living. Some Independent Living advocates (e.g. Adolf Ratzka) have supported the development of public service markets where providers compete to attract users with purchasing power derived from ‘direct payments’ – i.e. funding for personal budgets provided directly to the user. Others (e.g. Jenny Morris) have criticised such marketisation as an unanticipated and unintended effect of struggles against welfarist paternalism that needs to be restricted rather than promoted. Post-2008 austerity has enhanced the tensions between these two groups. It has also strengthened the arguments of those disability scholars and activists who have been concerned that the marketisation agenda could actually undermine rather than promote Independent Living.
Personalisation in healthcare
Despite the Department of Health’s budget being formally protected, the NHS has also been subject to austerity measures, not least in being required to find £22 billion ‘efficiency savings’ over the next five years to plug the estimated £30 billion ‘black hole’ in its finances by 2021. Consequently, NHS budgets face real terms cuts at a time when it must meet the significant challenges of caring for an aging population and addressing sharp rises in long-term and chronic conditions. Personalisation of healthcare services, particularly through the introduction of greater competition and choice, has been presented as a means of meeting the financial aspect of these challenges, while also addressing social justice concerns, particularly issues of equity and empowerment. As a result, personalisation within the NHS echoes the contradictions within disability services regarding social justice.
In 2003, the then Labour health secretary John Reid suggested that the personalisation of healthcare services could contribute towards social justice by making access to choice more equitable across the NHS. Choice has always existed informally within the NHS, particularly for the articulate and ‘sharp-elbowed’ middle classes – those used to negotiating with authority and getting what they want or need from the system. Personalisation was billed as a means of formally extending choice to less advantaged people who are more used to taking what they are given by enabling all patients – regardless of their relative advantages – to select the time, location, provider and even content of the healthcare services they receive. Yet personalisation may actually end up accentuating inequality among patients, especially if, in practice, the choices and opportunities it offers are more likely to be taken up by relatively advantaged members of society. In a new manifestation of Tudor Hart’s famous law of ‘inverse care’, where the amount of care received is in inverse proportion to the need for it, it is possible that personalisation will end up benefitting the relatively advantaged most. This is because, in healthcare as in disability services, empowering people to take control of their lives is not simply a matter of providing them with the formal opportunity to make decisions and exercise choice (see Owens and Cribb, 2013). Patients who take up personal budgets will often require additional forms of support (e.g. advisers, counsellors or peer-supporters to provide information, education, motivation, confidence, advice, etc.) to negotiate the bureaucratic and financial complexities of managing their own care – which costs money.
Furthermore, in the absence of wider changes to the socio-economic structure of society (particularly remedial action to tackle the causes of adverse material, socio-economic, cultural and political environments which underpin many forms of social inequality, not least those related to health), providing patients with a greater degree of choice over their treatment will not of itself empower them to actually achieve better health in the way that the literature that promotes personalisation typically suggests. The opportunity to use personal budgets to purchase non-standard treatment items (as illustrated by the media headlines) will do little to improve the lives of patients if they remain trapped within material and social circumstances that negatively impact on their health and well-being. Consequently, there is a danger that the individualising focus of personalisation – which becomes pivotal when personalisation is reduced to a form of market-based choice – risks obscuring the structural public health issues and exacerbating problems of powerlessness, inequality and injustice. Moreover, this danger is amplified by the acute financial pressures facing the NHS.
Whilst personalisation has the potential to deliver more user-centred, sustainable, efficient and equitable services that contribute positively towards social justice agendas, there is a danger that personalisation may be used to disguise not only the negative effects of public sector retrenchment but also new forms of hierarchy and growing inequality. Consequently, there is a need for critical engagement with processes of personalisation as they affect health and social care services, particularly in the context of financial austerity and especially where personalisation is presented as an unequivocal improvement.
This post is based on our article ‘Personalisation in disability services and healthcare: A critical comparative analysis’, co-written with Professor Alan Cribb and published in Critical Social Policy in 2015 (Vol. 35, No. 3).
