Written by Sarah Williams, Associate Director of Research and Clinical Effectiveness.
Today is a very big day in my life. Today marks the day that my 13 year old daughter's best friend, Mary has officially completed her treatment for Leukaemia. Arriving home to a bouncing girl relating highlights of Instagram celebration chats following the last lumbar puncture will stick in my mind forever; as will that awful night in 2013 when I had to come home and tell her that her closest friend in the world had cancer. It's been an emotional few days.
Mary and her family have been quite extraordinary through this journey; I can't remember Mary complaining once and she has managed to go through 27 months without ever being hospitalised for infection or sickness. She's even won an award for her bravery. But whilst I take nothing away from her courage and resilience, and am so immensely proud of her I know that Mary is alive, and has survived this in such an ironically healthy way, because of clinical research.
Had Mary been diagnosed ten years earlier, she would have had a one in five chance of dying, not great odds. If I had been diagnosed at that age my chances of survival would have been less than 10%. Thanks to a programme of research, her chances when diagnosed in 2013 were over 90%. The survival rates are so high that trials (in particular UKALL(2011)) are in the enviable position of not needing to look at survival but instead at reducing the side effects of treatments and chances of reoccurrence.
Mary's diagnosis came with shock, terror, overwhelming grief, and a feeling of helplessness... But my coping mechanism soon after hearing the news was to start looking for relevant trials (I should say that my job is leading a research department in an NHS Trust so I had a head start) - I knew that if we could get her into the research sphere, she would have access to the best staff, the best treatments and would have a massively increased chance of a good outcome. This is established fact. I needn't have worried - Mary and her family were on the ward at Southampton General Hospital within hours and almost as part of their admission, they were told about some clinical research and asked if they would like to take part. They said yes. It was the UKALL trial.
As it happens Mary was randomised to the normal care group who act as a comparison against the more experimental regimes, but that didn't matter. Clinical research was integral to her care and her admission to hospital. It meant that treatment could be tailored specifically to her and that she could be monitored for any adverse change very regularly and treatment adjusted to keep her as comfortable as possible. In a very short space of time, a dedicated programme of research has meant that the vast majority of children survive and furthermore, can live relatively normal lives whilst undergoing treatment and then a full life beyond.
A lot of cancer pathways do it this well; research is part of everyday care (I would go so far as to say that Mary and her family barely noticed they were part of this trial). Patients have access to the latest treatments based on the very best evidence... And are contributing to that knowledge base themselves. Every patient or every person that uses our healthcare services deserve this same right - the right to access clinical trials should they choose to, the right to be treated according to the best evidence. In fact this right is part of the NHS Constitution. And every member of staff deserves to be part of this, to be part of cutting edge treatments and innovative teams. This doesn't necessarily mean higher cost, in fact quite the opposite.
Clinical research is why I get up in the morning - I am proud to work for the NHS and my job is to make research as accessible as possible to as many of our patients as would like to be involved, and within easy reach of our staff, all of whom want to give the very best care that they can. That shouldn't be a privilege, that should be an expectation, a basic standard of every day care. I don't think I will ever tire of badgering everyone in my organisation to live up to this expectation - in fact I am constantly astonished that I have to. Every one of us leads a healthier and better life because of clinical research (think immunisation programmes, environmental health laws, antibiotics etc) and we should expect those who work in healthcare to be an integral part of this constant drive for improving treatment and care. It might not be everybody's job to do research but it is everybody's job to know about research, to support and embrace it and importantly, make sure their patients can easily access it.
And so I challenge any of you to ask the next doctor, nurse, therapist or other clinician you visit about research in their area and how you can be involved. Don't let them fob you off. If you are in a place that knows about clinical research, you are in a good place.
I will be eternally thankful to the UKALL team, to Cancer Research UK, the paediatric team at Southampton General Hospital for making research core business, and to the army of outstanding healthcare professionals who have looked after Mary and her family.
It's been in excess of 800 sleeps, but we've made it. Today is a very good day. Mary and Milly, BFFs.