Reflections on why I got involved in research and why it matters to me

Monday 28th February 2022

I am sure that most of us who get involved in health and social care research and services do so because of something that has happened in our lives to us or someone close to us. There is often a certain date associated with what happened which leads to anniversaries of that date taking on a particular significance to us. On such days we often reflect on what happened and how it affected us and other people who are important to us. And that leads me to today, the 28th of February 2022, which is a very significant day for me and my daughter Louise. Twenty-five years ago today Louise’s mother Jacky died, aged 35, from an aggressive form of breast cancer. For me that day marked the start of what has become something of a mission for me. I made a pledge in Jacky’s memory that, when I was ready to, I would try to do what I could in some way to help ensure that other families wouldn’t have to go through what we had. What I ended up doing was getting involved in health and social care research in a number of ways, few if any of which were planned. Some of this is rapidly reaching what I hope will be another significant moment, this time for patient and public involvement itself.

Twenty-five years is a long time and it is hard for me to believe it is really that long since Jacky’s three-and-half year journey from diagnosis and through cycles of treatment, remission and relapse ended in her death too young, too soon. Most of the time what happened feels like it is in the dim and distant past but it is never that far from my mind and every now and then, quite out of the blue, it hits me again and makes me wobble emotionally. It serves as a reminder of that pledge I made to myself in Jacky’s memory and how that has shaped the person I am now and what I do what I do to try to make that pledge a reality.

So, here are some reflections on what I have done in the 25 years since Jacky died and why involvement in health and social care research matters so much to me. It is a version of ‘my story’ of cancer but one that focuses on what happened after Jacky’s death rather than her illness itself. I have occasionally referred to Jacky’s death and my role as her carer fleetingly in introductions I make when I get involved in research. However, it wasn’t until about five years ago that I actually told the story of what happened to Jacky publicly for the first time, which I was asked to do as part of one of my roles with Cancer Research UK. I was nervous about doing so and the first time it was emotionally draining. However, it also served as a helpful reminder to me about my pledge and why I do what I do. Generally, I don’t think it is helpful to tell the story unless there is a particular reason for doing so. I feel that it is more important to channel insights from my experiences into fulfilling what I am asked to do when I get involved in something. Today, twenty-five years on from Jacky’s death, does feel like an appropriate time to tell a version of ‘my story’, but not the one about Jacky’s illness. This one picks up on that version and connects a series of events in my life in the twenty-five years following Jacky’s death. 

My pledge to Jacky’s memory came from a feeling of helplessness. I couldn’t do anything to prevent her dying too soon, too young, and depriving Louise of a lifetime’s love from her mother and me of my best friend, lover and soul mate. We tried, as did her many doctors and other healthcare practitioners, but ultimately there was nothing any of us could do to prevent the inevitable. My immediate priority after Jacky’s death was to look after Louise, Jacky’s parents, as she was an only child, and to try to make some sense of my own life again.

Fortunately, I built some space and time into my pledge to get to grips with all of that. I was lucky to have the love and support of my family and some special friends who brought light into the dark early days. I was, much sooner than I could imagine, able to build a new family life for me and Louise with Sarah and her children James and Elspeth, whom Louise had known all her short life. Sarah had been a close friend of Jacky’s too so shared my loss very closely, which helped build some emotional stability for me to move forward and to think about that pledge and what it might turn into. I had long grown very close to Jacky’s parents, Gladys and Ted, who treated me as part of their small family from the first moment I met them. I lost my mother young to the after-effects of smoking and my father just two years after Jacky, also a victim of cigarette smoking. Gladys and Ted gave me so much that it was natural for me to support them in their grief too for the rest of their lives.

I was also lucky with my work, my boss and my work colleagues. When Jacky died, I was a research manager in the then NHS Research and Development programme, what is now the National Institute for Health Research. I worked for two senior doctors and researchers who gave me the space and time to decide whether I wanted to carry on with that role and then to go back to it in a way that felt right. Fate played a part for me in that and provided me with potential focus for my pledge to Jacky, patient and public involvement in research. I started as a ‘Regional Research and Development Manager’ very early on in the NHS Research and Development programme and so was there when it’s first National Director, Professor Sir Michael Peckham, introduced the concept of researchers working with patients, service users, carers and members of the public, starting with the setting up of the Standing Group on Consumers in NHS Research. My job included a responsibility to promote patient and public involvement and after four or five years it gradually dawned on me that perhaps it might offer me a way to fulfil my pledge.

Fate came in to play again when the time was right for me to start to do something in earnest. One of the problems of working in the NHS is the regular cycles of reorganisation that it faces from successive governments who can’t seem to stop tinkering with it, mostly for political aims and, sadly, to its detriment as well as the public’s. As I was going through my fifth major NHS reorganisation in twelve years the perfect job came up that seemed to have my name written all over it, as the first Head of Research for Macmillan Cancer Relief, as it then was. At the start of my interview and in response to the why do you want this job question it felt natural to cite Jacky’s death seven years before and the desire to give something back for the care she received as my motivation. And so, my pledge found its focus.

 I spent six amazing and productive years at Macmillan where I learned what involving people with lived experience of cancer really meant in developing and improving cancer services and research. I met some incredibly inspiring cancer patients, including in my interview, who showed me what you can do to channel a life changing event into something positive for others. I gradually dipped my toe in the water in that time as a person affected by cancer myself, initially with the National Cancer Research Institute (NCRI). A key part of my job was to represent Macmillan who were one of the member organisations of NCRI and through that I became an associate member of its Consumer Liaison Group, what is now the Consumer Forum and of which I am a now a full and quite active member. I also joined the advisory group for INVOLVE, the organisation that grew out of the group that Sir Michael Peckham set up to support and enable patient and public involvement in health and social care research.

Fate again came into play to shape the way that my pledge has come to fruition. Armed with so much knowledge from my time at Macmillan of the potential of patient and public involvement to shape research for the better I moved to work freelance. This enabled Sarah and me to move from Cambridgeshire to Pembrokeshire to a more relaxed and spiritual way of life indulging our love of the great outdoors, walking and cycling in its amazing hills and coastline. Contracts with the Prostate Cancer Charity, as it then was, and Pancreatic Cancer UK enabled me to meet many more inspiring cancer patients and cancer carers, like me, and to see more examples of the potential of patient and public involvement to do good. I stayed as an associate member of the NCRI Consumer Forum and also became a member of the small charity Independent Cancer Patients’ Voice through its utterly inspiring, but now sadly late, founder Maggie Wilcox, who I first met when I was at Macmillan. And then fate enabled me to connect my growing experiences of getting involved in cancer research with my research management background. Through contacts from my NHS Research and Development days I responded to a call for input to help with the setting up of the Health Research Authority (HRA) in its early days. A series of fixed term contracts scoping out the role that patient and public involvement might play in the HRA and then developing a strategy for it accidentally became a permanent post as the HRA’s Public Involvement Lead, as I called myself, when those contracts exceeded two years.

I have been incredibly fortunate that the HRA has enabled me to become something of a ‘public involvement chameleon’ interweaving a part-time professional role leading the HRA’s work on patient and public involvement with a growing number of roles over the past nine years as what I refer to as an ‘advocate for patients in research’. The mutual benefits to the HRA and the, possibly too many, organisations I am involved with wearing my patient advocacy hat have enabled me to continuously learn so much from so many inspiring people and get involved in things I never dreamed I would twenty-five years ago. Cancer remains the main focus for my patient advocacy in research because that is my main source of ‘lived experience’ both from caring for Jacky but also from many friends and family members, including one of my three brothers and our sister, who have also had cancer in the past twenty-five years.

In just under two weeks’ time an incredibly exciting initiative will be announced that I feel will finally help ensure that patient and public involvement becomes usual practice in all health and social care research. A significant number of leading UK organisations that fund, manage, regulate and support research will publish a shared statement that patient and public involvement should be a core part of health and social care research and setting out how they will work together, including bringing in as many other organisations as possible, to make that happen. Once again fate came into play for me to make this happen. The incredible response of the UK’s research community to the Covid-19 pandemic also highlighted that patient and public involvement was not fully embedded in research and out of that my role at the HRA alongside my brilliant team enabled us to address that, which has led to this new and very significant initiative. It feels for me like this is the main legacy of my pledge to Jacky.

I haven’t managed to do anything directly that might stop other families losing someone to cancer too young and too soon. However, I hope that indirectly, with the help of fate, I have managed as best as I could to use my knowledge of health research and how it is managed, my experiences of caring for Jacky and other people I love who have had cancer and other healthcare conditions and my ever-developing knowledge of patient and public involvement to enable others to do that. I realise that the pledge I made is never ending because of the nature of cancer. However, the advances in cancer research over the past twenty-five years that have seen ten-year survival from cancer double from one in four to two in four. It feels like those benefits are accelerating through further incredible advances in science and collaboration including between the people and organisations who make research happen and the people and communities whose lives it saves and improves.

The involvement of people and communities in research matters so much to help ensure the research is important and relevant to their lives and acceptable to take part in. It matters also because it gives us a means of using the passion and drive that come from our experiences of life for the benefit of others. For me that feels like the best of humanity. I hope that if she was able to somehow see what I have done over the past twenty-five years that Jacky would be pleased that I made that pledge and feel that I have channeled my experiences in a positive way, including in a very distant way helping to ensure fewer families have to go through what we did. I will, of course, never know that but that hope is what keeps the desire to help and do something positive as keen now as it was twenty-five years ago. Involvement matters to me. Involvement matters to everyone.

16 thoughts on “Reflections on why I got involved in research and why it matters to me

  1. Well that is certainly from the heart Jim. Cancer is evil, my mum had breast cancer when i was 17 and my brother 15, and we had already lost Dad (cigarettes being the main cause but his was heart disease)
    Mum made it through. One of the lucky ones back in 1977.
    Your story brought a tear, but also hope. See you soon x

  2. A powerful and moving reflection which will resonate with many. It is nearly 15 years since my husband Alan died with a rapidly progressing form of Alzheimer’s disease. It took me a while to be able to publicly tell “our story”. I dedicate my work, as a (volunteer) lived experience contributor to dementia research, to Alan as I remember his poignant and oft repeated words during his illness: “Please help me, I’m afraid”. My hope is for a less frightening world than the one Alan experienced and in which carers are supported to build the skills they need to support those they love.

  3. A wonderful read Jim. It’s hard to believe a quarter of a century has passed since Jacky died. I see the echos of all you have achieved in my experiences with cancer over the years, for which I thank you heartily.

  4. This is very lovely to read, contextualising your work and linking it to your meaning and purpose in the 25 years since Jacky’s death.
    With love from a proud brother!

  5. Thanks for sharing, Jim.

    Public engagement is everything – without it we cannot have a “human” health service and the battle to have a patient voice, a responsive service is still a big issue today .

    You’ve been a leader and inspiring too

    Your support to me via the then Eastern Region’s Enterprise Award has been fundamental in my career which saw me developing a model of general practice care in disadvantaged areas across the U.K. as well as receiving an IPPR/ Guardian award for public involvement in health care

    So, through supporting research and development of clinicians, you vicariously made a huge difference to a lot of people

    Thank you !

    1. Thank you very much Rory and good to hear from you and that the Enterprise Award was so useful. I had a nice reply on Twitter from Richard Lehman who is another Enterprise Award Alumnus.

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