Margaret's reasons for getting involved
Margaret has played a fundamental part in setting the UK apart as a pioneer of patient involvement and participation in research. Regarded by the research establishment as an equal partner, and respected by all she works with, she works tirelessly to improve outcomes for cancer patients and their families. In June, she was awarded an MBE for services to cancer research in Northern Ireland.
We asked Margaret what lead her to this moment, and her vision for involvement in the future.
Tell us a bit about you
"I was born in 1950 in Castlereagh, East Belfast. I studied diagnostic therapeutic radiography and over my 40 years plus in the cancer centre, I have never regretted that choice. Outside of work, I became a Relate counsellor from my 20s onwards, and for the last 10 years of my working life I had the privilege of establishing an information and support service within the radiotherapy department for patients and carers.
My faith has been a central part of my life and I am active in my local church community – it was there I met my husband Stuart. When we were in our 40s, Stuart died very suddenly which was a very major life event for our daughter, Vicky (aged 15) and for me. Since I retired 8 years ago, life has been busy but I still have time to enjoy coffee with friends, murder mystery books, attempts to learn Irish and to explore European cities with Vicky. I also sing with the Sing for Life Choir which is sponsored by Cancer Focus NI and Crescent Arts Centre. There are over 100 members, all of whom have been impacted by cancer."
What are your reasons for taking part in research involvement?
"I have three personal reasons for involvement:
- It’s my way of giving back for my treatment. My surgery technique, the combination of chemo drugs, dose and fractionation of radiotherapy, the tablet I took this morning – all owe a big thank you to research.
- Seven of us became friends in the chemo unit. A friendship that lasted long after treatment finished; but within 5 years I had been the funerals of the other six. Research can mean a different outlook for people meeting up in 2018 and beyond.
- And finally, because I sat with my niece Elaine, and her husband Peter, as she cuddled and said goodbye to her baby son Thomas, on the day she died with Non- Hodgkin’s lymphoma. Research could mean another little boy would have his mummy to take him to nursery.
This is why I took the opportunity offered by CRUK back in 2014 to help them shape the development of patient involvement at the charity. CRUK were always good with engagement, but involvement within the organisation at a central level was new back then. This was an opportunity to be a small part of “beating cancer sooner”.
What’s your vision for involvement in the future?
"Over the years I have witnessed involvement move from a tick box exercise to genuine partnership, but there needs to be continued growth in true partnership between patients/carers and researchers and decision makers. There has been a complete culture change within the organisation. Now ‘involvement’ needs to be further progressed, to be owned and acknowledged at the highest level of decision making, in areas where the patient voice can make a difference.
The public and patients need to know and understand that research is the basis of excellence in health and social care. Throughout the research world, and especially in the area of decision making, there is still work to be done to show the impact and value of involvement. So much can be achieved in partnership working both for patient benefit and to benefit the NHS."
What does being awarded the MBE mean to you and for the landscape of patient involvement and cancer research in Northern Ireland?
"It’s totally unexpected as I get far more back from research involvement than I ever give! I have been overwhelmed; I am very excited and very humbled.
I see it as recognition of the involvement work undertaken by the 23 members of the NI Cancer Research Consumer Forum (a brilliant group of people) and the continuing growth of the value of involvement within NI. Personally I want to thank Ruth Boyd, CRUK Senior Nurse, and the NI Cancer Trials Network for their support and all the Researchers we partner with.
Your question was about NI, but I believe it is a wider recognition of involvement and the valuable work of fellow colleagues in the many groups I work with – Cancer Research UK, NCRI Consumer Forum/ Steering Group, ICPV, Use my Data, EORTC, EAPM (sorry if I have left anyone out!) "
"I would encourage anyone who has been impacted by cancer to consider getting involved."
Margaret Grayson MBE, Involvement Network Member
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