Disabled people and people with long term conditions are experts and masters in improving their life chances and other outcomes. Every condition is both a crisis and an opportunity to reassess life, set new priorities and – most importantly – make use of care and support in ways that are personal, effective and efficient. Disabled people have the passion and empathy to support others and have learnt to come up with creative solutions to the difficulties of everyday life. They see how things could improve.
Of course, these qualities are highly applicable and in great demand in social care and the NHS. But the care sector as a whole is still very much geared towards ‘treating’ people as passive recipients who merely fill out questionnaires and take up beds until they can be discharged. Professional status is often not achieved together with disabled people but rather against them, or at least outside of direct encounters with them. Even the short time that professionals spend with disabled people is often only dedicated to instruments, rushed assessments and computer screens (which could just be turned around so that both the professional and the person have a chance to make sense of what the screens describe).
This is not necessarily about how much time is spent by professionals with people with long term conditions but rather how the time is used – that is what communicative space the person is given to bring in their expertise. There is a whole life outside a clinical or social care appointment. Disabled people make sense of a condition and contextualise this within every aspect of their life.
Involving people in decisions about their care can make the key difference to more positive health outcomes – as emphasised in the Health and Social Care Act 2012. Little things such as extending the time spent on the planning of support can reduce the demand on more costly care, just because people have been involved at an early stage and feel good about that. User-led organisations can and do carry out non-complex reviews of services but there should be more of them. ‘Peer navigators’ sometimes support disabled people through an ever complex landscape of services. There is no reason why social care departments and (forthcoming) clinical commissioning groups should not give a parity of voice to disabled people when it comes to decommissioning large block contracts and recommissioning more innovative types of support instead. Such coproduction is not an add-on but core provision.
So it is right that the long term conditions strategy opens up to a more holistic life course approach. But this has to go alongside a much deeper cultural change in social care and the NHS.
Perhaps one day when people start to pool their direct payments and personal health budgets they will lead encounters and welcome professionals as follows: ‘I would like to invite you to play a role in my care plan.’