Thursday 25th January 2018

(6 years, 4 months ago)

Lords Chamber
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Baroness Rebuck Portrait Baroness Rebuck (Lab)
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My Lords, I, too, thank my noble and utterly inspirational friend Lady Jowell. Very few people can take a personal challenge and transform it for the universal good with such courage, insight and compassion. She is a beacon of light and purpose to us all, and I thank her from the bottom of my heart.

My remarks are based on personal experience, as my late husband, Philip, Lord Gould of Brookwood—a great friend and a tremendous admirer of my noble friend Lady Jowell—died of oesophageal cancer in 2011. A routine test in 2008 showed an advanced adenocarcinoma and a 30% chance of survival. Chemotherapy had limited effect, and influenced by advisers—we have heard about that—and fortunate enough to have the means, my husband chose to go to New York for his life-saving operation. That was a mistake, and 18 months later the tumour returned in exactly the same place. Only then did we discover the oesophageal centre at the Royal Victoria Infirmary in Newcastle, and Professor Griffin, who undertook a very unusual second operation which extended Philip’s life by a year. But where was the accessible database highlighting this centre of excellence when we needed it most?

There have been precious few innovations in oesophageal cancer since, so we must harness digital development—accumulate and share research studies from our NHS and around the world—as the noble Baroness, Lady Jowell, advocates with the Eliminate Cancer Initiative. In the UK, interestingly, we have a resilient IT platform, Coordinate My Care—CMC—created by NHS clinicians for end-of-life care in London, putting patients’ experiences at the heart of its data collection. Doctors develop a personal healthcare plan, which is shared in real time with health and social care and emergency services. In the last year, five out of 10 seriously ill patients died in hospital in London, but for those on CMC it was less than two out of 10, with the biggest increase in those able to die at home, as they wished. If we genotype every cancer sufferer and do DNA sequencing on their tumours, as our Chief Medical Officer has called for, and if we ask patients to record every side effect on a simple app, by adding this phenotypic data to genotypic data we could—just imagine—have sets of priceless data and improve patient/oncologist consultations by providing a graph of reactions.

Most oncology teams are rightly focused on improving survival. Pain, nausea and bone marrow support are the main traffic lights for routine intervention. But patients with digestive system cancers, including stomach and colon cancers, all suffer other unpleasant side effects which can crush their spirit, leaving them debilitated and home-bound. A pioneering gastroenterologist at the Marsden who specialises in uncovering the cause of these symptoms and curing them was so essential to Philip’s quality of life that I fundraised for a proof of concept trial which over the past two years found that nearly all patients responded positively to one of three inexpensive tests based on simple algorithms delivered by a trained nurse. The result: a better quality of life and better tolerance of treatment. Could this inexpensive intervention be introduced in relevant centres without a randomised trial?

Our marvellous NHS is overwhelmed and struggling to make the paradigm shift to personalised cancer care and take advantage of global research. A universal patient-centric database of genetic information, treatment and symptoms could be a bridge between the tried-and-tested protocols we currently depend on and the personalised medical programmes of the future, ensuring increased innovation and continuous improvement, which my noble friend Lady Jowell has called for. Perhaps Coordinate My Care could become a national programme, providing key data for her urgent vision of international medical co-operation.