You can’t separate the need for compassion in health and care systems from changes in power in those systems. The need for compassion in health care is one of the main reasons why it’s time for a people-powered NHS.
The NHS’s challenges are as big as they come: demographic changes; £100bn plus budgets which will not balance; a million plus workforce under increasing strain. But NHS England’s (NHSE) first flagship programme under its new CEO has been for care organised at the smallest and most personal level: Integrated Personal Commissioning (IPC) which will build upon the long-established personal budget programme in social care and newer rights to Personal Health Budgets for people with long-term conditions.
There are already nods towards ‘personalised’ approaches in every area of healthcare, which is now expected to be more ‘patient-centred’, more collaborative (see http://coalitionforcollaborativecare.org.uk/) and involve more participation and choice. A run through these buzzwords could suggest an unrealistic offer of new rights and choices which will further raise expectations at a time when austerity threatens the promise of universal, free healthcare.
But IPC needs to be not just a promise of new rights, but a suggestion of new ways in which responsibilities can be shared, so that people with long-term support needs and their families can collaborate with professionals to achieve health and wellbeing. This is also the vision which underlies social care’s personalisation reforms (despite a persistent view that they mainly describe a programme of personal budgets).
Personalisation is at heart a move towards an ‘asset-based’ or ‘capability-based’ ethos, which is hard to capture in a central policy initiative but is perhaps the most important change we can make in public services. Through looking for the whole person, and recognising what people can do, professionals build their empathy with people with long term support needs and their compassion. Decision-makers who genuinely recognise the expertise and capabilities of individuals will find it hard to ignore the prerogative to share their decision making power with those people. A capabilities approach also looks for the huge contribution which families and in some cases communities do and could make, bringing the value of their compassion and ability to care into the foreground as being of equal or greater value than formal services. This builds a strong case for transferring resources from hospitals and other power bases to communities and families.
This will not always mean closing services to transfer resources elsewhere (and it is unfortunate that ‘personalisation’ and ‘transformation’ have proved such convenient euphemisms for ‘cuts’ to which they are unrelated), but it should mean that every health and care intervention is arranged to support individuals, families and communities to develop and sustain their capabilities.
This is the approach taken by Shared Lives schemes. 8,000 approved Shared Lives carers across the UK provide regulated personal care for 12,000 people with learning disabilities, mental health problems and other support needs. They do so through sharing their own homes and family and community life with the individual who needs support following a ‘matching’ process which aims to set up supportive relationships which can be lifelong. This family-based approach is used for stroke rehabilitation, dementia day care and even an acute mental health service. People involved talk about people being ‘just one of the family’, rather than their ‘client’ or ‘customer’. They talk about the contribution that people with support needs make to their family life and the upbringing of their children, not just about the help they need.
Approaches like Shared Lives are currently small scale. They need to grow, but also the rest of the health and care system needs to take on the learning from them and embed their values. Rather than requiring health services to increase the volume of what they are doing, stretching them well beyond where they can retain their care, skill and compassion, we would gain greater value from requiring services to demonstrate additional impacts and added value, through taking a capabilities approach. This would mean commissioning services which demonstrate that they:
- Leave people better informed and more confident that they understand their condition, the intervention, their choices and where to turn for further help.
- Help people to keep and grow their community connections
- Strengthen supportive relationships which have been identified as important to good outcomes
- Inform and connect family carers to training, support and emergency back-up. The assumption should be that family carers need everything a paid professional would expect to provide great care
- Recognise and measure their negative impacts on informal support networks and the individual’s resilience, for instance through care being offered at inconvenient times, in institutional locations, or in ways which stigmatise or reduce someone’s confidence.
Wellbeing is not something we can have a right to, nor consume. It is something we can try to achieve, in collaboration with healthcare professionals and those around us. The promise and challenge of IPC is not to create new rights, nor new forms of competition, but real and meaningful ways to share that responsibility, and the empathy and compassion which goes alongside this. This must be a two-way process in which commissioners share their control of jealously-guarded budgets, but in return are able to work with the whole resource of their communities. This could for the first time allow them to be part of addressing societal health challenges like the epidemic of loneliness in old age or persistent health inequalities in communities labelled ‘hard to engage’. Millions of family carers and thousands of social entrepreneurs make remarkable contributions despite ‘the system’. What could a genuinely people-powered NHS achieve?
This is an edited version of an article which first appeared in Health Service Journal.
Alex Fox FRSA is CEO of Shared Lives Plus (www.SharedLivesPlus.org.uk) and a member of the Think Local, Act Personal partnership: www.thinklocalactpersonal.org.uk. People Powered NHS: a Power to Create discussion paper is published by RSA here: http://www.thersa.org/action-research-centre/community-and-public-services/2020-public-services/reports/people-powered-nhs.