ImPatient: Asking good questions and getting organised

Sidney Wolfe has died. You should have heard of him. He was a pioneering US advocate for safer medicines in the 1970s. As well as helping to remove dangerous medicines from the market, he fought hard against regulators and for proper monitoring of products after they were licensed. He worked with the renowned consumer rights activist Ralph Nader and inspired hundreds, if not thousands, of activists around the globe, including me.

Asking good questions is one of the chief qualities of the activist. These two videos demonstrate the art. One is at a local authority scrutiny committee challenging proposals to centralise GP appointment-making in a NW London Hub. The other is from the States, with ruthless questioning around how an investigation concluded – despite evidence – that President Biden may have memory loss.

An interview with two social justice activists, authors of a book on “organising”, argues: “Organising pushes against the idea that we can do this on our own, and that we win just by protesting. It’s not just about all showing up in the street one time and a big display of shared aspirations. You need to dig in for the long haul and coordinate with other people and build a power block.” 

And I love this: “Solidarity is not equivalent to identity – it transcends your identity, or expands it. We need to push beyond the boundaries of the self. Solidarity is connecting across difference, building new alliances between people and then transforming the status quo.”

Alzheimer’s Society has a proud activist and co-production history. I believe it was the first charity to include someone with lived experience of the condition on its board. Now, a powerful awareness-raising campaign has led to criticism. Some object to the “dehumanising” notion that people with Alzheimer’s “die” repeatedly (as the ad states) at different stages of symptom progression.

The society says the campaign was based on extensive co-production. One participant in the process did not agree and said his group objected to the depiction. I wonder about the extent of co-production in decisions about the final version. How we tell our stories and how we have influence over how our stories are told is pivotal.

One tactic of the activist is to paint it all black. Dorian Lynskey in The Guardian takes a closer look at “our insatiable appetite for doom and asks why each generation is so drawn to the idea that they will be the last”. He writes: “The word crisis comes from a medical Latin term for the point in an illness that decides whether the patient will recover or die… We love to talk about the death of this and the fall of that, and to boast that we are there to witness it. We do like to feel special.”

A response to my last newsletter highlighted a disturbing story: “Great article. We just fail over and over again to listen to and involve the people we provide care and support to. Most pivotal conversation in my whole NHS career was at a meeting where a very vulnerable mental health lived experience partner said they were asked to tell their story to leaders, only to be told they were ‘lying’ as ‘that would never happen in this hospital’ and then left with no one speaking to them after the meeting.

“They were left to find their own way home in their now very distressed state. How do we continue to be so cruel and defend the indefensible. Fortunately she had proof and was strong enough to take both the original incident and subsequent treatment further and to speak out that the incident happened – but ffs. If we designed services and care with people, maybe we would not hear of things like this.”

Without power over policy and the controlling narrative, there’s little chance of that.

And there’s no more of a patient-activist vacuum than in the national debate about the NHS. Chris Hopson from NHS England (formerly of NHS Providers, the union for hospital trusts) got all the publicity speaking out on reasons for low patient satisfaction in the NHS. Where were the patient groups? The Patients Association did a website response highlighting the need for social care reform and a workforce plan. A HealthWatch press release mirrored the survey findings, its CEO merely saying the issues are “worrying”. National Voices – the umbrella organisation for the health voluntary sector – has an excellent manifesto for equitable care, but had no immediate response to the low patient satisfaction news.

Meanwhile, Mr Hopson was everywhere.

What are your views on the extent to which patient groups have a credible voice and power in the system? Is there a case for a new organisation that more directly articulates the views of patient (lived experience) leaders – those of us who’ve been through stuff, who know stuff, who want to change stuff?