ImPatient: Tough work – The emotional labour of patient leadership

Last month, I slept the night on the floor of Barnet Hospital emergency Department, with gut problems. In the side-bay with me, in terrible pain, were a woman with a perforated intestine and a man with acute pancreatitis. Both were upright on armchairs. Thirty or so others were scattered on trolleys or chairs of various descriptions, waiting all night for admission.

The nurses did their extraordinary best. One found me a reclining chair at 3 am. But a consultant surgeon was patronising and also offhand to his junior doctor sidekick. I told one nurse about his “arrogance”, who whispered back: “They’re all like that.”

Worried I’d find myself on his ward, I bit my tongue. If I fear reprisals, what are the chances of someone sharing the truth who’s not white and middle-class? I then read that trainee doctors in that trust’s surgical department are being reallocated to other hospitals due to their poor culture. I got in touch saying I could provide evidence. I’ve not heard back.

Northern Care Alliance, which runs four hospitals in Greater Manchester, is making 100 jobs redundant, including quality improvement, patient experience and complaints. NCA patient Mel Thompson says: “I receive most of my care [at a NCA hospital] for multiple co-morbidities. I’ve had a horrific recent experience, a massive MS flare, and told to go to A&E as the only access point when my MS nurse route failed. I also don’t trust their systems – they have me down as a chain smoker (I don’t smoke!). I’ve had an initial call with the PALS and had no further follow [up] six weeks later. I want to complain to the CEO of the NCA but I lack the spoons.”

Someone who’s succeeded in sharing her truths more widely is Louise Gallie, a former intensive care unit patient and now ICU rehabilitation volunteer. Read her account here.

Being involved can grind you down. James Downs has resigned as a Royal College of Psychiatrists patient representative. Simon Rose has resigned from lived experience roles in the NHS and at the RCPsych: “Burnout results from trying to create spaces for people to be heard, whilst working in arbitrary spaces where power continues to be held by systems that can’t or won’t share”.

Like me, Simon believes executive-level lived experience roles (e.g. patient director not non-executive or NED positions) provide hope: “These come with power and accountability, enabling oversight, ensuring engagement of people with lived experience is embedded and everyone’s business.”

I also resigned recently from an international research programme because the host organisation did not appear to practice what it preached about co-production. Yet I’ve received only kindness about, and consideration of, my mental health needs within two other projects.

But I don’t know how long I can continue in this game, as I rebuild my mental health again. Is the system unwilling or unable to deal with us? This is tough work.

Hilton Mayston writes uniquely angled blogs on living with vulnerability, compassion, hope and strategies for survival. To quote one post: “There are times when circumstances humble you to rock bottom. Resources are stretched capacity and capability questioned. Safety strategies are tested, risk assessments adjusted. Hope the underlying asset, if available. Hopelessness sometimes the extreme.”

Amanda Bok of The Synergist echoes the activist’s weariness but shares good news: The World Health Organisation will soon enshrine “social participation for universal health coverage, health and well-being”.

Ms Bok writes that “social participation” here means “empowering people, communities and civil society through inclusive participation in decision-making processes that affect health across the policy cycle and at all levels of the system”. She hopes such international promises lead to national governments and agencies embedding patient participation.

This brings back memories. As a 22-year-old activist, I helped Health Action International – a radical network supporting better medicine use – lobby WHO to stop the over-promotion of medicines by pharmaceutical companies and for them to be more open with data about medicines. These are still problems 40 years later. And we still need patient revolutionaries.

But Paul Streets, a veteran of the charity sector, believes charities have lost their radical identity. Personally, I’ve seen patient groups over the years having to adopt new business models, including contracts with the statutory sector and corporate sponsorship, both of which inevitably raise questions about independence.

This work demands both proper opportunities and proper support. We need (a) career pathways for those with lived experience who want to pay work in the system and (b) an independent network for patient-lived experience leaders outside it. Otherwise, more of us will burn out and the NHS continue to block its ears.