Early years in the Netherlands
I grew up in Zaandam, just north of Amsterdam. I knew I wanted to be a nurse when I was ten years old, but I could never have imagined or planned where a nursing career would take me. In those days, people with intellectual disabilities were called ‘retarded’ and were mostly hidden away in institutions. Palliative care was a completely new concept: the first modern hospice was founded by Dame Cicely Saunders in London in 1967, just a few years after I was born. My nursing training included placements at large, secluded campuses where people with intellectual disabilities and psychiatric problems were thrown together.
I moved to London at the age of 21 – it would be a useful life experience, I thought, and a chance to practice my broken English. Six months abroad, that was the plan. I joined L’Arche, a community where people with and without intellectual disabilities live and work together in a spirit of equality and mutual respect. For the first year, I shared a bedroom with Michelle – you did that in those days, when everyone had less privacy and choice. Michelle has Down Syndrome and was institutionalised as a toddler; she emerged feisty and resilient. She taught me much about the importance of friendship and forgiveness. (We’re both playing the guitar in the picture above.) I was bereft when Michelle died in 2019.
Six months turned into three decades. I left the L’Arche community after eight years (having met my husband there), but I remain a L’Arche member today. My personal and professional life has been transformed by it. Finding ways within research to listen to the voices of people with intellectual disabilities (including those who don’t use words), and working with people with intellectual disabilities as co-researchers, has its roots in the L’Arche ethos of inclusion and a recognition of each person’s value and contribution to the world.
After L’Arche, I fulfilled a long-held ambition to work as a hospice nurse. I didn’t have a lot of practical nursing experience, but Trinity Hospice in Clapham, South London, was very supportive and rather patient with me. When they sent me on a ‘Care of the Dying’ course as a junior staff nurse, I wrote my final paper on ‘Bereavement and Mental Handicap’ (as it was then called). The director of nursing called me into her office to congratulate me on it, telling me that I could become a national expert on the topic one day. It seemed a ridiculous notion, but I have never forgotten her encouragement. When someone asked me what was known about supporting someone with intellectual disabilities at the end of life, I did a literature search and found absolutely nothing. So I published a case study in the Nursing Times about one of the very few hospice in-patients with intellectual disabilities I had looked after, and thus became an international expert on the topic overnight. It was 1997, and for years, there was barely anything else in the literature.
I stayed at Trinity Hospice for eight years, working as a staff nurse, a ward sister, and for the last few years as a clinical nurse specialist in the community. It was a huge privilege to visit patients and families of so many different backgrounds in their own homes, listening to them at a pivotal time, when the things that matter in life come into sharp focus. I learnt a lot about families, about life, about the way people live in England – and I could safely say that by now, I had indeed acquired a bit of life experience and learnt to speak English properly.
I had also made England my permanent home.
St George’s Hospital Medical School
I left the hospice in 2001 to work on a project to improve cancer care for people with intellectual disabilities, led by Professor (now Baroness) Sheila Hollins at St George’s Hospital Medical School in Tooting, South London (now St George’s University of London). She had employed several people with intellectual disabilities as research advisors. Her vision of including people with intellectual disabilities at all levels of the research process was ground-breaking and inspires me to this day. It has been a particular pleasure to be involved in the marvellous and invaluable ‘Books Beyond Words’ series, which she founded. I joined their Board of Trustees in 2021.
Embarking on a research career
When our project ended in 2004, it had become clear that we needed more knowledge about what people’s needs were, so rather than go back to work in the hospice (as I had initially planned), I applied for a research grant to investigate those needs.
I was now in my 40s, married with three young children. This late start of an academic career has meant that my research is strongly rooted in clinical practice. I still feel that I am a clinician at heart. It matters to me that all research is useful to people’s lives and work. This is also my main reason for writing and publishing: I see no point in doing research if you don’t share your findings, successes and failures with other people.
My first research project was the ‘Veronica Project’, a three year ethnographic study of the needs and perspectives of 13 people with intellectual disabilities who had cancer. I followed them very closely, spending time with them every week – often for hours on end – over months and in some cases years. Eleven people died during that study. It was an intense, humbling and often devastating time. I wrote a book about these 13 people, which I see as one of my most important works.
The Veronica Project has influenced all my subsequent research questions. It also gave me an excellent colleague in Amanda Cresswell, who is a Veronica Project survivor. Amanda was so keen to help doctors, nurses and carers learn about the needs of people with intellectual disabilities who have cancer or are dying, that we employed her as a co-researcher, alongside Gary Butler, who had been working with me from the start. For the past decade, Amanda and I have worked together and spoken at conferences across Europe – which explains why she features in several of the header photos on this website!
During the Veronica Project, I completed a long-distance PhD by publication at Maastricht University in the Netherlands (2007), titled ‘Palliative care for people with intellectual disabilities’. It was supervised jointly by Professors Sheila Hollins and Leopold Curfs (pictured on my CV page). Their help, encouragement and support has been invaluable and remains so today. I have also been greatly helped by the wisdom and support of senior colleagues Dr Jane Bernal (a psychiatrist) and Dr Jane Hubert (an anthropologist; she died in 2019).
Research, and more research
That early research was followed by a range of other research projects. I have focused on how to break bad news to people with intellectual disabilities, because I found that this was something all families, care staff and professionals struggled with – those who wanted to be open and honest, as well as those who believed in protecting people from difficult truths. It led to the development of a new model for breaking bad news, another book, and a dedicated website. and another study, the ‘Talking About Dying Survey’.
Other research has included staff training needs; the needs of people with intellectual disabilities who are affected by a friend or relative with cancer; and an investigation of healthcare systems and their ability to meet the needs of people with intellectual disabilities, leading to the development of a new model for carer involvement.
All my studies are supported by research advisory groups, made up of people affected by the research, including people with intellectual disabilities, family carers and professionals. We have devised innovative ways of adapting research methods to enable people with intellectual disabilities to take part. Some may call this a deviation from accepted good research practice; I call it ‘reasonable adjustments’. In 2016, I started having monthly meetings with a local group of people with intellectual disabilities to think and talk about death and dying. We call ourselves GRASSroots (Group for Research Advice, Sharing and Support); several GRASSroots members have become members of my current research advisory group. I am still learning how to do inclusion well. Including the perspectives of people with severe and profound intellectual disabilities is a particularly difficult challenge.
An international perspective
I have been increasingly focused on national and international aspects of the delivery of care to people with intellectual disabilities at the end of life. I chaired the Palliative Care for People with Learning Disabilities (PCPLD) Network (helping practitioners to learn from each other) from 2008 to 2014 and am now one of its first Trustees. I chair the PCPLD Network judging panel of an annual award for excellence in end of life care provision for people with intellectual disabilities, which sets a benchmark for practice.
I also chaired the European Association for Palliative Care (EAPC) Taskforce on Intellectual Disabilities, which developed a White Paper, published in 2015. The Taskforce has now become an EAPC Reference Group, which aims to build on international collaboration to advance knowledge and practice.
Two decades after that first paper, written when I was a junior staff nurse, the palliative care needs of people with intellectual disabilities are firmly on the national and international agenda – but it remains an under-researched and under-funded field. In recent years, I have focused on the development of collaborative networks in order to pool scarce research resources. I am always inspired by meeting other researchers and practitioners who share my passion and who want to work towards ensuring that all people with intellectual disabilities get a good deal at the end of life. There is a lot of wonderful work happening across the UK and beyond, and I am very pleased to continue to be part of this evolving field.
It has been a particular joy to be able to link my work with practitioners and researchers in the Netherlands, taking me back to my roots. During the decade since my PhD, the topic of ‘palliative care for people with intellectual disabilities’ has been taken very seriously there, resulting in some excellent work. I remain closely linked with Maastricht University, am in contact with researchers and practitioners elsewhere in the Netherlands, and occasionally travel for work-related visits or lectures.
In 2014, I was diagnosed with breast cancer. It took the best part of three years to fully recover from the onslaught of surgery, chemotherapy and radiotherapy. Working in the field of end-of-life care does not necessarily make it easier to cope with life’s trials and tribulations, although it does provide some entertaining moments (Doctor, moments after telling me I had cancer: “What do you do for a living?” Me: “I just wrote a book about how to break bad news.”) I coped by writing a blog – my first venture into putting my thoughts online. Now that I have fully recovered and no longer need that blog, I can instead focus on work again, including the blog on this website.
I still work at St George’s University, a convenient 20 minute bike ride from home, although I am now employed by Kingston University (which has a Joint Faculty with St George’s). I was given a Chair in 2018. The Joint Faculty has supported and enabled me to grow our Learning Disability Research portfolio, working on new projects and collaborating with a number of other universities. Inclusive research remains important. We developed and trialled a research training course for people with learning disabilities which was hugely enjoyable and also very successful, leading to new paid research roles for most of the students. We have employed Richard Keagan-Bull, one of the course graduates, as my Research Assistant.
My three children are now adults, which gives life a different rhythm. I still play that guitar; I sing in a chamber choir; and I am learning to play the cello. (Not easy.) I have also discovered the hard-to-explain thrill of year-round outdoor cold water swimming. Work is important and inspiring, but it’s good to have a balance.