I wept when I heard that Tessa Jowell had died. Some of those tears were for my mum too. You see, both were formidable women and advocates for social change, who lived with brain tumours and pushed for medical research.
Dame Jowell lobbied for social change through social work, mental health advocacy and politics. My mum did so through acting. I’ll never forget, as a young teenager, seeing her appear on the screen of our old TV in a film highlighting racial injustice in the era of Windrush (“Sapphire”, if you’re curious). She hadn’t told me the film would be on, and giggled when she saw my reaction to her celluloid form. Our subsequent discussions were deeply formative of my political values.
My mum succumbed to a brain meningioma just short of her 60th birthday. Non-cancerous, but certainly not benign. As the tumour began to invade the membranes of her mind, she’d been proud to see me start my career in medical research, as a fledgling neuroscientist. Studies that she would not let me put on hold while she declined.
I wish I could say that I’d gone on to a long and illustrious career, researching the very mechanisms of the brain that had gone awry in my mum. Wouldn’t that be poetic?
I left the lab to pursue a long (but perhaps not illustrious) career in public involvement in scientific research. Raising awareness of scientific research, catalysing conversations about social and ethical aspects of science, and – importantly – actively involving patients and people with lived experience and knowledge of medical conditions in research. I left the lab partly because I was failing to see fluorescent connections flourish between my neurons in Petri dishes, and real life.
I welcomed Tessa Jowell’s passionate support for more medical research into brain cancers, of course I did. And I welcome the announcement that doubles the amount of government funding devoted to brain cancers. It’s a positive outcome from a good life and a sad death (though, I’ll admit, I’m not quite resisting the cynical urge to shout “opportunistic PR” at Jeremy Hunt on the radio).
But – with absolute respect and heartfelt warmth to Dame Jowell’s memory and her family – my plea to people in charge of research funding, is to consider:
1. Why does it take the death of a well-known figure to increase a research budget? Tessa Jowell was dubbed ‘The People Politician’. Might she have argued for an appropriate resourcing of research budgets, commensurate with everyone’s health research needs, based on our (considerable) evidence base?
2. Research comes in all shapes and sizes. Understanding the biological bases of healthy and diseased systems is without doubt important. Such science is sexy, wondrous, cutting edge, with curative potential. It’s also long-term, expensive and not guaranteed to translate into treatment or prevention. Research is as much about understanding and implementing everyday interventions that might make a difference. A simple straw transformed my mum’s drinking habits and hydration when she was in care, beyond cure. Except, it wasn’t always remembered. Some days, I would take my mum out for a walk in the only rickety wheelchair I was allowed to use. Cherry blossom stroked her cheek and snowed on her lap. Her response was a rare and joyous smile, which meant more to me than any medicine.
3. Research operates in a wider NHS and social context of care. It took ages for my mum to be diagnosed. Perhaps her mental health conditions – she lived with depression and bipolar disorder – were confounding variables. And when the diagnosis did come, the invading biopsy needle removed not just the culpable cells, but her remaining lucidity. My mum’s meagre savings for her old age and my future – she was a single parent – were spent on a hospice far away from home and hospital. Some days, I couldn’t afford the Tube fare there. Those wheelchair walks? Lovely – until we both nearly hit the tarmac as I stumbled from one pavement pothole to another. I cursed the local council. There’s no way – at that time – that research would have even entered my consciousness.
4. Involving patients and carers in the priorities, design and delivery of research helps to make research relevant and responsive to the needs of people with conditions. I have argued before that scientific research should become more human. Many argue that it can guard against research waste. So, I was dismayed to read UKRI’s announcement – yesterday of all days – that they “will work collaboratively with researchers, innovators and entrepreneurs […] charities and foundations […] universities, and businesses from small to large.” No mention of patients, people or carers with lived experience. I’m sure UKRI would tell me that all the above are people, and of course they are. And they will point me to their public engagement strategy (which prizes ‘public understanding’ and support for research). But this misses the point. Expertise by lived experience can offer a different and humanising lens to research leading to a valuable form of evidence production (in partnership, of course).
My mum would have been 85 this year. She taught me that tears – of sadness, anger, frustration, joy – can be forces for good. This blog piece is not meant to score points during a sad time. It is merely my homage to Tessa Jowell and to my mum, and a plea for responsible research.