Heather Still 

"I feel like an autobiography of illness experience can be as long and as complex as my medical history, to condense it into a couple of paragraphs is a challenge!

I stumbled into patient experience work when I started studying the psychological impact of having congenital illness. I was born with congenital heart disease, I am currently on my fourth pacemaker and have a limited life expectancy. I noticed a lot of the literature copied the psychological impact of chronic illness, but being diagnosed later on in life is a different experience to being born with illness as you do not have that period of health. This was a lightbulb moment for me and I began seeing everything in a more critical light, realising the importance of having lived experience in research and health care.

I have worked for charities and the NHS for the last seven years, in frontline social work or researching. Collecting data is a pet project of mine. Aged 15 I used to watch the adverts on TV and tally the gender of the voiceovers and compare it to what product they were selling to evidence sexism. I lived in a village and there wasn’t much to do I guess.

This was not the only reason why I applied to work for Cochrane. I was a carer for a family member living with addiction. A review from Cochrane on AA [Alcoholics Anonymous] allowed me to have meaningful conversations with health and social care staff, and passing this research onto other family members allowed them to start a dialogue with their loved ones. Family members are often so crucial in caring for those with illness and we can be great advocates for our loved ones. Given the opportunity, we would also be fantastic promoters of evidence-based practice.

This is why I wanted to work with Cochrane, because producing high-quality evidence can make a huge impact on the care of ourselves and our families. If we as patients and family members had these resources, we can advocate for better care collectively."

Genna White 

In 2012 my eldest son was diagnosed with Specific Language Impairment (SLI), now known as Developmental Language Disorder (DLD). At the time there was very little awareness about this condition and very little information available. I began researching and building a support network of peers and professionals for my son and me.

In 2013 I set up a support group for parents and carers of pre school children with speech, language and communication needs (SLCN) that was shortlisted for a Shine A Light award from The Communication Trust in 2013/14. In the same year, I also set up a DLD Facebook group for people affected by or interested in a DLD diagnosis. The group now has over 2400 members from all over the world and has become a place for parents and carers to share support and a forum for students and professionals to share research, consensus, articles, reviews, and events.

In 2019 I presented an original research proposal poster exploring the functional impact of DLD on family life at the Child Language Symposium. In 2021 I qualified as a speech and language therapist. I work in clinical practice with children and young people with communication difficulties. My personal experience and clinical knowledge provide me with a unique perspective that I use to help families like my own. I am passionate about supporting individuals to access help and information, while ensuring that their lived experience is recognised and informs our ongoing understanding.

I hope to facilitate a reciprocal knowledge exchange between Cochrane UK and its consumers that enables the dissemination of Cochrane’s work to individuals who will benefit from it directly, and supports their meaningful contribution to Cochrane’s work."