Creating more mature relationships between professionals and users of services

Disabled people and people with long term conditions are experts and masters in improving life chances and other outcomes.  Every condition is both crisis and opportunity to re-assess 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 learned to come up with creative solutions to the difficulties of everyday life. They see what and 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 professional and the person have a chance to make sense of what the screens describe).

This is not necessarily about what time is spent but rather how this same time is spent, that is what communicative space the person is given to bring in their expertise. There is a whole life outside of a clinical or social care appointment. Disabled people make sense of a condition and contextualise this within their life domains, and such involvement can make the key difference to more positive health outcomes – as emphasised in the NHS White Paper 2010. 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 de-commission large block contracts and re-commission more innovative types of support instead. Such co-production is not an add-on but core provision, if we take that passage in the NHS White Paper seriously.

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.” 

Bernd Sass, Disability Rights UK