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Patient Power and National Voices

Submitted by on 09 Jan 2012 – 13:20

Jules Acton, Engagement Director, National VoicesJules Acton, Engagement Director, National Voices

THE mantra ‘no decision about me without me’ is all the rage here in health policy circles in England.

While the health reforms are being hotly debated, there is one thing everyone agrees: that people should have more say in their health and social care. By ‘everyone’ I mean politicians of all flavours; health professionals and, most of all, service users themselves. This consensus is not new: patient involvement is enshrined in the National Health Service (NHS) Constitution; it is in the General Medical Council’s guidelines to Good Medical Practice and it gets a mention in the new Health and Social Care Bill, although not enough of one (more of that later). In short, if there is a guideline on how to work in the fields of health and social care, there is likely to be a reference to involving patients.

Yet patient involvement isn’t really happening yet in England. Not across the board anyway. There are pockets of good practice but patients consistently say they want to be more involved in decisions about their care. Depending on the treatment setting, between one third and one half of all patients surveyed say they wanted more involvement in decisions. These proportions have not changed since national surveys began in 2002. In short, there are still plenty of ‘decisions about me going on without me’.

The gap between the rhetoric around patient involvement and the reality on the ground is one of the key concerns of National Voices, the health and social care coalition. National Voices has more than 170 members – 140 of them national health and social care charities – all working together to strengthen the service user voice. We challenge the current deficiencies in the current systems of care and call for:

  • Voice, choice and involvement: We call for a stronger patient, service user and public voice in the design and delivery of services. We champion the NHS Constitution, informed choice, shared decision making, and more responsive services – listening and adapting in response to feedback and complaints.
  • Fairness and justice: We champion services delivered according to need. Many people get worse access and less good care than others, and not all voices are heard. Many battle to get the services they need. We want a better deal for people who are disadvantaged because of their condition, disability, the place they happen to live, their age or ethnicity.
  • Safety and quality: We want to see a stronger culture of quality improvement and safety, and a focus on people’s experiences of care as a fundamental dimension of quality.
  • Right care, right time, right place: Improved outcomes and a higher quality of life would happen if primary and community services were consistently better, if there was better support for people with long term conditions and their carers, and if we hospitalised people less.
  • A seamless service: services don’t join up well and there are problems in the transitions between primary, community and secondary settings in health and between health and social care. Many people find they are passed from pillar to post; can’t get packages of care to meet all their needs; suffer lack of continuity of care. We call for more integrated design and delivery of services.

National Voices’ recent work includes collective responses to consultations around the Health and Social Care Bill for England. These include our landmark document, the 9 Big Shouts, which sets out the things service users most want to see from the reforms. We were pleased to see that many of the concerns raised were later reflected in the Health and Social Care Bill although we do need to see it go further. For example, while the Bill includes a welcome reference to ‘patient involvement’ it doesn’t actually set out what this means. We think it should include some detail on the most effective forms of shared decision making with patients – things that ensure people get better outcomes and an overall better experience. These are: shared decisions about the most appropriate treatments, based on patient preferences and values as well as clinical information; personalised care planning, where professionals help people organise their care packages over time; and support for people to manage their long-term conditions in order to maximise quality of life. Why is it important to set these out in the Bill? Because ‘patient involvement’ is often misunderstood. We fear that without this extra clarity, the people who commission health care in the future will confuse patient involvement with public consultation as has happened in the past. See the details of our suggested amendments to the Health Bill.

Meanwhile, National Voices recently produced the groundbreaking National Voices’ Principles of Integrated Care. One of the most consistent calls from patients is the need for joined-up care. Currently, for many patients, getting the support they need from the health and social care system can be like picking your way through a spider’s web, as seen here in the webs of care produced by our members. Our 12 principles are based on patient experience and research evidence. They offer practical ways forward for politicians and health and social care professionals in smoothing out the experience for service users and improving health outcomes.

Over the next year National Voices members will be building on the work above, pushing to help ensure that the current mantra of ‘no decision about me without me’ becomes a reality. Do email us if you would like to follow developments via our e-newsletters.