Issues

Deirdre Heenan: personalisation of care

The personalisation of care has the potential to transform the design and delivery of health and social care, writes Deirdre Heenan.

‘Transforming Your Care: A Review of Health and Social Care in Northern Ireland’ was published in December 2011. Described as the biggest shake-up of healthcare in the region’s history, it concluded that doing nothing was not an option as the current and future pressures on the health and social care system provided an unassailable case for change.

The report set out a vision for the future of health and social care in Northern Ireland which ensured safe, sustainable, effective services for all. It advocated a radical shake-up of the current system underpinned by twelve major principles for change, one of which included the personalisation of care. During the review, the concept of personalised care attracted almost unilateral support from clinicians, the voluntary sector and service users. Yet, it was quickly apparent that there was confusion about what the term actually meant. It was often used interchangeably with terms such as personal budgets, self-directed support, and direct payments.

The personalisation of care is not a new term and has been widely used in public policy discourses since the early 1980s. Somewhat uniquely, the concept has attracted support across the political spectrum and the UK Coalition Government has continued to drive it forward. So what does the personalisation of care mean?

Personalisation is a broad multi-faceted concept which has to date defied a single definition. It usually encompasses: tailoring assistance to people’s needs; empowerment through access to reliable support, information, advice and advocacy; an emphasis on collaboration and partnerships; developing a person-centred approach; facilitating independence through direct payments and individual budgets; embedding flexibility, choice and control; and enabling self-care and self-management.

The adoption of this personalisation agenda means thinking about care and support services in a very different way. The current system was designed for an entirely different set of needs and is no longer fit for purpose. For many people, their experience of the health and social care system is defined by limited information, lack of choice, frustration, bureaucracy and a seemingly constant battle to secure the services they require. Service users are treated as passive recipients of care, handed out by an inflexible, paternal, unresponsive system with gatekeepers presenting a take-it-or-leave-it option.

The evidence base for personalisation presents a mixed picture. On the one hand, there is a substantial body of research evidence that suggests for some service users, increased control and choice over their support leads to increased independence and better outcomes. Additionally, there is evidence that indicates that personalised services are more cost effective as individuals are experts in their own needs and unlikely to waste resources. Shifting the balance of power and enabling informed decision-making can dramatically reduce the need for costly and distressing crisis intervention.

On the other hand, there are a number of serious obstacles to the implementation of this agenda. Of fundamental importance is the fact that a one size fits all solution is not appropriate when addressing health and social care needs. Some service users do not want the responsibility for managing their own budgets and regard this development as an unwelcome administrative burden which is neither attractive nor liberating. There are also serious concerns around the risks of exploitation of vulnerable people and the availability of appropriate support in rural areas.

So can the personalisation agenda transform the design and delivery of health and social care? In short, the answer is yes. It has the potential to transform the system and enable service users to remain independent and shape the service to meet their individual needs. It is by no means an easy option and requires a fully developed supporting infrastructure of information, advice, and advocacy to be both empowering and accessible. Personalisation is not about shifting the risk from the state to the service user and calling it empowerment. Properly designed, implemented and managed it can be a crucial component of a sustainable health and social care system which facilitates early intervention, prevention and greater flexibility over how and when resources are allocated.

Deirdre Heenan is Provost of the University of Ulster’s Magee campus

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