Hole in the Policy Bucket – Patient Voice in Decision Making

There’s a hole in the bucket of policy-making – a patient-sized hole.

The story of the NHS can be read as a continuing battle between policymakers and clinical leaders over the ownership of patient voice. Commissioners and providers, managers, and clinicians, continue the skirmishes, proclaiming they know what’s best for us.

Meanwhile, we continue to be marginalised.

And whilst shared decision making becomes all the rage at individual care level, shared decision making or co-production in policy-making is nowhere.

Take a few recent examples.

Patricia Hewitt’s ICS review has no patients included, though I hear one or two sub-groups might consult with one or two of the national patient-public interest groups.

The Times has set up a Health Commission with no patients included. And a new mental health inquiry is underway. Given previous inquiries, I’d be astonished if any service users or carers get to be integrally involved in how that operates.

Recent discussions on what to do about the NHS crises, have excluded patient voices. And nowhere is there any attempt at nuanced debate that tries to disentangle what really matters to patients (as distinct from the public as citizens and tax-payers).

I recently received a YouGov survey that asked ‘who is to blame for the current state of the NHS?’. I had one tick-box choice between ‘The Government’ ‘The NHS’ ‘Patients’ or ‘I Don’t Know’.

Historically, in inquiries into safety scandals, the best we get is to be consultees, with those who’ve suffered, and often those who’ve triggered the inquiry in the first place through extreme emotional toil, reduced to walk on roles.

Patient Leaders – those affected by life-changing illness, injury or disability who want to influence change – provide ‘evidence’ to ‘professional experts’ and seldom have a say over analysis, interpretation, recommendations or decision-making.

And the scandals continue, and the root-causes of those – lack of humanity in care, lack of connected systems, for example, continue unabated. Could one reason be the omission of patient clout?

Meanwhile, a few cross-condition specific groups and the big condition specific charities catch the crumbs at the table in policy making – maybe called in as one-stop shop consultees for big set pieces.

I wish them luck forcing the door wider open. Some are over-stretched. Some have become too reliant on the hand that feeds them. Some lack the remit – either caught between the ‘patient’ and ‘public’ interest, such as HealthWatch, or being the voice of the voluntary organisations, rather than the voice of those with lived experience. This is not blame. It is merely to point out the need for strengthening the wider alliance.

The emergence of patient (lived experience) leadership means that it is time to reconsider patient voice in policy making and in national inquiries for example – this raises both opportunities and threats for some of the umbrella groups and charities, who have become accustomed to seeing themselves as the sole legitimate representative voices

However, I believe that those of us who’ve been through stuff, bring a unique lens on healthcare – one that foregrounds relational care and connected systems. Further, if we reframe people with lived experience as ‘experiential practitioners and leaders’ then we belong ‘inside’ any policy making process, as advisors, augmenting clinical and managerial expertise, rather or as well as on the ‘outside’ as independent voices.

We should be in there designing the process, setting the paths of inquiry, co-designing the invitee lists, grilling professionals, asking the questions, challenging assumptions, reframing the dialogue, modelling collaborative leadership. We should also be authoring the reports – making sure always that conversations remain grounded in what matters – those aspects of humane care and connected systems that seem always to be the foundation stones for safe and effective provision of healthcare. This would augment, rather than displace the role of other traditional organisations. It’s time to humanise healthcare. We can help fill the bucket-hole.