Is it enough to ask for health and social care services to be 'caring' and 'responsive' (and what should these terms mean)?
Are service user control, empowerment and decision making a fundamental aspect of provision, or a 'nice to have'?
These questions are raised in the post-Francis atmosphere of re-regulating our services.
Francis proposed a common set of fundamental standards of care, to be used by all services and all regulators. These should be simple, easily understood by the public and service users and, if breached, should open up strong enforcement action including prosecution.
It's an understandable logic. But does it threaten the wider progress of person centred care?
A consultation from the Care Quality Commission, under new management and with a brief to rebuild the inspection system, indicates some of the risks. The CQC proposes five simple questions about care quality. The two on patient experience are: 'Is it caring?' and 'Is it responsive?'
Taken together, these domains appear to mean that people should be listened to, respected, and provided with compassionate care. All admirable, but all paternalistic. And not in alignment with the progress made towards putting people at the centre of the management of their heath and care.
Most recently, the report of Don Berwick's safety advisory group emphatically insisted that safe care in a learning culture rests on the full involvement of patients at every level from their individual care to the governance of the system. Nothing in the CQC approach indicates they share this view.
Berwick was adding to a raft of policy and regulatory approaches that has been built over recent years around service user involvement such as the duty of all doctors (in Good Medical Practice) to work in partnership with their patients, sharing decisions with them.
The NHS Constitution says we have the right to full information about treatment options, and to participate in decisions. The Narrative for Person Centred Coordinated Care, at the heart of the national system drive for 'integration', expresses the aspirations of service users to own and control their care. The ethics and values of the social care system insist on maintaining the maximum independence and autonomy of people with needs.
The 2012 Act requires NHS commissioners to 'promote the involvement of each patient in decisions', and the Mandate for NHS England gives it an objective to 'dramatically' increase the knowledge, skills and confidence of people in managing their health – advances for which National Voices and the Health Foundation campaigned together.
Strikingly, among the first and best legislative expression of these aspirations are the 2010 regulations for providers under which the CQC operates. Regulation 17 includes requirements to support service user independence, choice, self care and shared decision making, predating the current government’s expressed policy support for 'no decision about me, without me'.
These regulations are about to be rewritten to incorporate a new set of fundamental standards and a more easily triggered regime of prosecutions for breaches.
So could the Francis recommendations, and the preoccupation with hospital care, safety and compassion, actually be backward steps that signal to providers and other system leaders that we are returning to all-out paternalism? National Voices has entered a strong critique of this approach in our submissions to the CQC consultation.
At this point, before a welter of further consultations begins, there is a need for some fundamental rethinking:
Are service user involvement, independence and control, universal values and standards across the health and care systems, supported by commissioners, providers and regulators alike?
Or we are heading for a major culture clash as social care and some parts of the NHS promote a systematic shift towards person centred care, while others prioritise avoiding prosecution by maintaining a few core standards, that happen not to include the full involvement of people in their care and treatment?
Don Redding is Director of Policy for National Voices, the health and social care charity coalition. He was formerly head of policy and communications at Picker Institute Europe and a health and social care journalist.