Jess Mills, daughter of the late Tessa Jowell, has told brain tumour experts and government ministers why she is determined to make the best cancer care accessible to millions, ‘not just to millionaires’, in honour of her mother’s legacy.
This is an edited version of Jess’s speech, as she joined The Brain Tumour Charity’s CEO to give voice to the community at a meeting of the Tessa Jowell Brain Cancer Mission:
“I know all too well what it is like for patients to live on the front lines of the battle to defeat brain tumours. At 6.45pm on the 24th of May last year, the ‘magic of the ordinary’ ruptured for my family, forever. My heavenly Mum had two major seizures and was subsequently diagnosed with a Grade 4 Glioblastoma, in the left temporal lobe of her brain.
Nothing can prepare a patient or family for a diagnosis like glioblastoma. Even for a family of staunch optimists like my own, the facts cast us off into a landscape that felt impossibly dark – the median prognosis of 14 months, the standard of care which offers no hope for longer-term survival or quality of life and the tiny proportion of patients – just 2% – who make it onto a randomised control trial.
We were all totally disorientated by grief, and the disbelief that this could happen to the person most central to our universe.
However, what we didn’t know at this point was that we were already at the lucky end of an awful spectrum.
We had access to some of the leading global experts in neuro-oncology and medical innovation. Genomic data was sequenced from Mum’s tumour, and then everything from neutraceuticals to repurposed medications to off-label cancer drugs could be recommended. Many of these – when used in combination – have shown evidence of patients hugely outliving their prognosis and with good quality of life.
Mum was monitored in real time, so we were able to adapt her treatments, based on how she was responding. Adaptation for patients is essential. If something isn’t working, you need to know immediately.
It can literally be a matter of life or death. Glioblastomas can grow at a rate of one centimetre per month, so the adaptive approach is essential if we want to help patients survive.
But what about the millions of other cancer patients and families going through a similar thing but without this extraordinary network of support?
The only time I saw Mum cry throughout her illness was last summer, after one of her radiotherapy appointments. She had observed the waiting room of people, and processed the brutal realisation that the fate of each person in that room had already been written by virtue of their privilege, or lack of it.
That status would determine their ability to go beyond the terminal limitations of the standard of care. In her words, this is “the most despicable example inequality”. For her, and for me, this work is an issue of social justice.
Her mission was written in these moments and subsequently, with her leadership, the Tessa Jowell Brain Cancer Mission has been brought together to radically rethink the way that we are approaching scientific research, trials, training and patient access to the front lines of therapeutic innovation.
I am hugely honoured to be co-chair of the Mission’s patient programme.
We are driven by one central question. How can we radically improve patient experience across the board, so as to measurably close the huge cancer inequalities that currently exist both in the UK and around the world – so that excellence, ambition, collaboration and therapeutic innovation are accessible not just to millionaires, but to the millions?
We have to put patients back at the centre of the picture.
Medicine and innovation at their absolute best should be there to do something very simple: to enable patients to re-establish the ‘magic of the ordinary’. To enable patients and families to live with a sense of peace and assurance that they, or their most loved one, are receiving the best possible care and being supported to live well at the same time.
For what is good medicine there to do, if not just that? I hope we never forget the beating hearts of each individual that should always stay at the central focus of our ambitions. If we are truly putting patients at the forefront of our visions for the future, this is something that should unite us all with a collective sense of mission and purpose.
In the Patient Experience Programme of the Tessa Jowell Brain Cancer Mission, we have our eyes firmly set on a future where every patient diagnosed with a rare form of cancer will have access to a world-class personalised approach, where our world-leading patient data analytics will enable adaptive combination therapies to be available to all.
But we are starting from a foundation in the UK where, for brain cancer and many other rare cancers, there is still has a wholly-fragmented national capability to deliver on the basic standard of care.
So the initial challenge for the patient programme has been to identify the key areas that need to be addressed immediately, in order to enable us to lay a foundation upon which we can build new roads to the future. Not in a way that holds up progress or innovation but in a way that enables progress and innovation to happen concurrently.
We have formulated our strategy based on each stage of the patient journey. After extensive consultation, our priority is to ask the government to support the national roll-out of a system of integrated multidisciplinary care for brain tumour patients.
This is sometimes known as the Cambridge Model or the King’s Model of care. It ensures, among other things, that every brain tumour patient is operated on by a surgeon who specialises in brain cancer, not by a general neurosurgeon.
It means that every glioblastoma patient is discussed by a multi-disciplinary team before his or her surgery. And he or she then attends a surgical neuro-oncology outpatient clinic as a first, ongoing and specialist point of contact.
In other words, adoption of the Integrated Multidisciplinary Care Model will ensure a gold standard of excellence is provided to all patients throughout the NHS.
This is not the end goal – that has to be the provision of more personalised and effective treatments and, ultimately, a cure for brain tumours – but it is a hugely important place to start.
Five months and 25 days ago, at 10:08pm, my exquisite Mum passed away, at home, in our arms- held by a kind of love that transcends earthly description, that transcends life and death.
Mum would be bursting with pride to know that less than six months after her passing, we are here to present our road maps to the future.
Let us always move forward together, charged with a sense of our collective ability to create the change that is needed, while never forgetting Mum’s battle cry: to live well with cancer, and not just die from it.”