Power to the people

It’s been a stated goal of more policy documents over the years than I’ve had hot dinners – patients should have more control of their health and care. NHS England’s recently published five year forward view also follows in these footsteps.

The case for change is clear; a system that listens to patients and enables them to achieve what they want to achieve in their health and wellbeing would improve outcomes and save money. But despite the long history of policy ambition, such systems still exist only in pockets around the country. We have yet to achieve any significant change in the relationship between people and services.

To coincide with a new paper we have published in association with National Voices – People in control of their health and care – we held a joint conference on 4 November to discuss these issues and showcase best practice. We heard from a fantastic range of patients, voluntary sector leaders, doctors, managers, policy-makers and researchers.

Ros Davies of We Love Life stressed the importance of communities and social networks in enabling us all to lead healthy lives, and urged the use of community development approaches and other initiatives which capitalise on people’s collective assets. We heard about how providing direct access to Citizens Advice Bureau services in GP surgeries helps people tackle the wider issues affecting their health and wellbeing. The award-winning Wiltshire Centre for Independent Living described how they use one-to-one support, peer mentoring and workshops to help older people and people with disabilities to live more independently. The Carers Trust highlighted the importance of creating a triangle of care between professionals, patients and carers.

Emma Walker from AQUA discussed their work on shared decision-making. She had many of us in tears with her story about Jim, a Second World War veteran who made decisions in defence of his country but towards the end of his life was deprived of the chance to decide where he slept by our risk-averse and process-oriented system. Alison Cameron spoke candidly about how her experiences of the health care system had negated her life resources and skills. She urged us to improve ways for people to use their assets and skills and not have them frozen by their experiences of illness and care.

Elisabeth Paice, an educator and doctor, ended the conference by talking about power. With too many targets, too many guidelines, and too many directives, she argued, patient power feels like yet another erosion of professional power. But we don’t need to see it that way. In fact, working in real partnership with patients is immensely empowering because it helps you deliver the care you want to give.

I find this a profoundly important way of thinking. Yes, in a paternalistic system that too often looks to politically driven targets and too easily resists change in favour of the status quo, there will always be a need to fight to turn the easy rhetoric about focusing on patients into hard reality.

But a shift in power from paternalism to partnership doesn’t necessarily mean that the powerful lose power as the powerless gain it. Maybe everyone wins in a system that truly reflects what patients need and want. You may say I’m a dreamer, but – as our conference proved – I’m not the only one.

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Comments

#278265 Caroline Moss

I am extremely interested in patient involvement and am as a patient beginning to get involved including going to the Nhs listening event 26th November in London I feel privileged to be able to participate I am also undergoing training for experts by experience thank you for the post

#316531 Lucia Dedear
Former Carer & teacher

There are 6.5 million VERY IMPORTANT UNPAID CARER voices in the UK which are being continually ignored even though they save the public purse £119b annually if not more. I emailed to NHS England to inform them their Five Year Forward Review was lacking in the support of unpaid Carers especially as they have produced a 'Commitment to Crers' document. We are constantly being told there will be an increase of dementia with the increase of the aging population...well then....it is LOGICAL there will also be an increase of unpaid Carers taking the huge responsibility of carer but with very MINIMAL voice and partnership with regards to the health and wellbeing of the person with the condition...let alone any support for the health and wellbeing of the unpaid Carer. Lots of rhetoric...over and over again....but no real financial commitment.

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