Our Team
All projects within the MyLifeTool programme were conducted in partnership with people who live with long-term conditions:
The team is led by Dr Stephanie Kilinc and Jo Cole.
Dr Stephanie Kilinc
Stephanie is a Health Psychologist and Senior Lecturer in Psychology. Stephanie is also involved in networks and projects promoting and developing community and peer research. Her research explores living with long-term neurological conditions, including epilepsy and acquired brain injury. She also has extensive experience leading co-production, community and peer research projects, as well as research using visual and creative methods.
Jo Cole
Jo has been an advocate and disability rights campaigner for 22 years, and was a co-founder of the Tees Valley, Durham and North Yorkshire Neurological Alliance, now Neuro Key. She facilitates an education programme to Universities to promote lived experience as a learning resource and published the Open Door series of lived experience narratives as learning tools for professionals.
Our Lived Experience Partners
All of our work is developed in partnership with people with lived experience of long term conditions.
Ruth Chalkley
Hello! I'm Ruth and I'm a patient with two rare neurological conditions: gluten ataxia, so I have gluten sensitivity / coeliac disease; and an autoimmune related condition with an umbrella term of cortical hyperexcitability, which means that I have symptoms of Stiff Person Syndrome. I work with Professor Marios Hadjivassiliou (The University of Sheffield) and Coeliac UK to help raise awareness of the neurological implications of being coeliac.
Cheryl Delisser
Hi, I'm a psychotherapist with nearly 20 years of experience working in NHS mental health services. In 2020, I unexpectedly developed long COVID, and becoming a patient myself gave me a deeper understanding of how long-term physical and mental health conditions can affect every part of life. It also reinforced for me how vital it is to receive care that is understanding, validating, and compassionate. Since then, I've drawn on my own healing journey to contribute to research, support service development, and enrich my clinical practice.
Lorelle Dismore
Lorelle is a Chartered Health Psychologist from Northumbria Healthcare NHS Foundation Trust. Lorelle's PhD study explored the experiences of patients undergoing forefoot surgery. Lorelle works with the Research and Development team, and the AGE research group. Her work involves improving pathways of care for patients with persistent physical symptoms, such as long term pain and fatigue.
Kylie Foxton
Hello, I'm Kylie. I live with various long term conditions, including fibromyalgia, dyslexia, osteoarthritis, but I will never allow them to define who I am. I'm a mother of two children. I work in a mental health service and understand how much LTC's can affect our everyday lives, thoughts, feelings, and behaviours. My aim is to help people to accept and understand our health conditions and create a positive mindset of what we can do, rather than what we can't do.
Rachel Hext
Rachel is an ill health retired Registered Nurse. Having worked for the NHS during the covid pandemic, she contracted covid working on a covid ward, and has lived with Long Covid since October 2020. A founder member of Long Covid Nurses and Midwives UK, Rachel runs two successful Long Covid Support groups within her community in Devon, representing Healthcare professionals who have lost their careers due to Long Covid. She has represented those with Long Covid at government level at the National Stakeholder Meeting.
Giles Hudson
This is Giles, after a horrific car crash, three months in a coma, at least six months Post Traumatic Amnesia, major physical injuries, a life which involves developing strategies to overcome daily challenges. A big part of his work is now with Teesside University in the provision of a tool enabling people to self-manage long-term conditions.
Jenny Joyce
Hi, I am Jenny, I first became disabled 18 years ago and took a long time to come to terms with being disabled and using a wheelchair. Since then I have developed numerous long term conditions alongside my disability and struggle continually with pain. I use my lived experience in my job at a Disability User Led Organisation and in various other projects. I believe MyLifeTool has a lot to offer disabled people/those with long term conditions.
Julie Murray
Hi, my name is Julie and I have over 30 years experience as a Health, Safety and Environment manager in heavy industry. Prior to contracting Covid further to my third vaccination I was an extremely fit, on the go, Social individual who thrived in the workplace and in life. Subsequently due to developing Long Covid, which in turn triggered Fibromyalgia and a significant number of other conditions 3 years ago, I have not been able to return to the workplace and become very limited in activities and communications due to anxiety. I am working hard to improve my life and manage symptoms on a daily basis. I choose to join this working group to help educate others and to improve the lives of other sufferes. We have not disappeared, we are hidden. We are still here.
Diane Williams
I'm chair of a chronic pain support group in Thornaby, Stockton-On-Tees, and am a Trustee of Neuro Key. I'm kinship carer to two adopted nephews with FASD, alongside being a foster carer to a young person with FASD and complex needs and a mum to two grown children. I also have co-morbidities myself. I aim to help others to understand that life can still be fulfilling with disabilities and pain.
Gordon Williams
A lived experience ambassador; Gordon raises awareness of living with hidden disabilities and is involved in many courses at Teesside University. He is a trustee for Neuro Key and lives with multiple neurological and mental health conditions and uses his experience to support others navigating life with similar challenges to his own. Gordon has a webpage called Neurologically Challenged and has published many articles giving a unique insight into the life off someone living with multiple neurological disorders.
Jo Wilson
Hello, I am Jo. I live with a long-term condition. I am a Teesside University graduate from the psychology degree and I have worked as a lecturer at a local college.
Across the different strands of the MyLifeTool programme we have worked with a range of researchers with specific expertise: