Taking control – our role in shaping the future of care

We began our Time to Think Differently debate with a focus on the patient, and now we are bringing it to a close with a focus on the role we will play in our own health and care in the future.

Roy Lilley focused on the patient as consumer and our growing desire to experience care in the same way we experience other services – at convenient times and places and using the latest technologies. He rightly points out that businesses in retail and banking have often empowered the consumer because, in the end, getting us to do things for ourselves makes business sense. Is there a business case for empowering patients in health and social care? This week, NESTA estimated that the NHS could realise savings of £4.4 billion a year if it adopted a range of innovations that involve patients in their care.

Given the volume and passion of responses, Roy's blog clearly struck a chord. But not all of us see ourselves as health consumers. In the second blog in this series, Roger Taylor argued that many patients 'simply don’t want to hold their doctors to account or get involved in decisions about their care. … It cuts across our most fundamental desire to put our trust in those who care for us.' Indeed when we are sick, vulnerable or confused we want to be cared for. And many of those caring for loved ones with dementia or other illnesses at home already feel that they are doing as much as they can and could not imagine doing more. Direct payments, personal budgets and care planning are all tools designed to give patients more direct control over their care, but they are not for everybody.

And yet even at times of vulnerability it is vital that we are involved and engaged in decisions about our care and treatment. Jeremy Taylor, Chief Executive of National Voices, reminded Roger, ’There is good, long-term evidence that a persistent minority of patients (and about half of hospital inpatients) are not as involved in decisions as they would like.’ Excuses abound about shared decision-making and why not to do it, particularly from clinicians who believe it is time consuming and expensive, and that patients don't want it. Angela Coulter addressed these excuses head-on in her paper for The King's Fund, and Al Mulley and colleagues powerfully argued that clinicians need to 'diagnose' patient preferences before recommending a course of treatment.

This idea of partnership – so strong throughout the blogs and debates – is at the heart of the future of our health and care system. As Christina Patterson said in our first blog, 'What we will expect in this partnership is a relationship that works both ways. We will expect to do more to keep ourselves well. We will expect the health service to provide better systems to help us when we're not.' Dr Havi Carel, in our final guest blog, identified the need for patients and clinicians to 'share a genuine understanding of the patient's life' and to recognise the shared goal 'to live well'. In response to this, Nigel Horwood, a patient, described this partnership, 'When I enter a consulting room I expect an equal partnership with my consultant and that decisions affecting my health are made jointly. The consultant brings the medical knowledge, experience and expertise to the partnership and I bring my history from 35 years of living with a chronic condition and the knowledge of my personal circumstances, attitudes and lifestyle which will have a bearing on any decisions that we make.' Too few patients experience this partnership routinely in their interactions with the NHS and social services.  Providers often focus on achieving clinical goals or financial performance.

Perhaps now is the time for a fundamental reorientation of the health and care system to focus on living –and dying – well and for establishing a new partnership between those providing care and those needing care and support, themes to which the Fund will return later in the year. As services are redesigned it will be critical that those of us who want and can do more are empowered to do so, AND that those of us who don’t are supported and encouraged to become more confident as active partners in our care. If such support is not made available, inequalities may widen as empowered patients take the opportunities presented to them to take control.

Changing these interactions and power dynamics is not easy and yet it’s critical if we are to establish a care system that is both responsive and sustainable. Some of the changes required are to the process, for example, routinely doing care planning or giving people access to direct payments or personal budgets. Others – such as the changes needed to strengthen shared decision-making – depend on changing the attitudes and behaviours of both users and staff. Critical to this is whether professionals feel they have the skills to work differently with patients, users and their families.