Jo Churchill - My Story
At thirty one years of age and a mother to two girls aged one and two years old, I was diagnosed with thyroid cancer. Two years later I had been through treatment and had added twin girls to our family – a get well present from my husband! We quietly donated to Cancer Research each month, not much I have to admit as funds were somewhat limited by four daughters, but I passionately believed in research. I felt that scientists, often funded by not only our charities, but also by academia and business, understood how to ask the important questions.
However I realised that patients are pivotal in giving them the information.
Fourteen years later, at the age of 45, I had the agonising task of sitting at our kitchen table with my husband and telling the girls that cancer had returned, but this time in my breast. My daughters were aged 17, 16 and 13 and were understandably very frightened. Treatment followed and I was feeling so much better when more tumours were discovered in the other breast the next year. I struggled to accept this and lost confidence in my health but then realised that I still had my voice, a patient voice. I began campaigning to find out how best to assist those who ask why?
Why do we lag behind the best countries in the world on survival rates? Why are 20% of cancers discovered in A & E when the prognosis is poorer? And why do we take so long to get drugs to licence, and consequently to the patient, when we know they are effective?
I believe in patient data being the power behind the science. Every patient holds an answer. With the support of clinicians and charities, and a strong sense of government purpose, I want to see data used for the benefit of patients. I want every life to mean or to have meant something; a patient should be able to choose knowledge as their legacy. I believe data holds the answers, the answers for my constituent whose two year old had a brain tumour, for a family I know with diabetes in several generations and for my uncle whose humour is tested by the Parkinson’s that attacks his body. Personalised medicine should be a reality, not a research project. Like me, every patient is someone’s parent, partner, child or friend and this cannot and should not be forgotten.
Data also offers us the possibility to accelerate medical trialling from seven to two years and the opportunity to link research together for new insights. My glasses aren’t rose tinted and I know I would want assurances and safeguards around the use of my data. However our medical future is uncertain unless we unleash the potential of information about patients, for patients.
Now, as a Member of Parliament, I have a unique opportunity to help deliver significant improvements to medical research and yet still represent the voices of patients.
Jo Churchill is MP for Bury St Edmunds