Following a recruitment drive, last month we were delighted to welcome three new members of our Public and Patient Voice (PPV) Panel. Read more about Loretta, Karine and Helen in their own words below.
My own experiences of the lack of support for young adults, particularly around mental health, has led me to become a patient advocate.Loretta
I am a rare disease patient and parent with a diagnosis of Fabry Disease. My lived experience of genetic testing and the transition from teenage to adult healthcare services included a lack of support around mental health, especially as a young adult. This experience has led me to become a patient advocate.
I have worked across private and public sector partnerships producing change across digital health, technology-enabled care, and enterprise. I was also the Communications Lead for the NHS England 3millionlives initiative, aimed at helping the then estimated 3 million people living with long term conditions and/or social needs who could benefit from telecare and telehealth.
As a result of my experiences, I run my own website and blog My Fabry Disease where I advocate for families with Fabry and other rare diseases.
I am also a Trustee at the Cambridge Rare Disease Network.
I want to ensure that patient voices and experiences inform and improve services, particularly access to genetic testing, screening and outcomes.Karine
In 2020 I was diagnosed with stage 2 bowel cancer and subsequently underwent surgery and histology and genetic testing within Nottingham University Hospitals NHS Trust.
I received a diagnosis of Lynch Syndrome (MLH1 mutation) and received genetic counselling including what future testing, surgery and investigations I would need, guided by national guidelines and best practice.
My background is in nursing, and I hold an MSc in Advanced Nursing Practice and a Doctorate in Health Sciences from the University of Nottingham (UoN).
Having recently retired from the NHS, where I worked as a nurse for 45 years across clinical care, leadership, research and education, I bring experience in cross organizational working, using research studies to inform practice and supporting patients and families with genetic testing to my PPV Panel role.
My bowel cancer and Lynch Syndrome diagnoses have confirmed my commitment to using patient voices and experience to to inform and improve services, particularly access to genetic testing, screening and outcomes.
I have come to believe that the patient voice is vitally important in medical research and development.Helen
After studying for a degree in Sports Science (human physiology) and Biology joint honours, I became a secondary school science teacher, and taught at GCSE and 'A' level for 15 years. My career came to an end when I was diagnosed with stage 4 colorectal cancer (BRAF mutation) at the of age 38 in 2021.
I have always had a strong interest in genetic testing for all cancers and generic conditions. Since being diagnosed with what is categorised as a rare form of colorectal cancer, this interest has increased. I have come to believe that the patient voice is vitally important in medical research and development.
Additionally I am a founding member of the campaign group Breaking BRAF (Instagram and Facebook). We are a group of UK-based BRAF colorectal cancer sufferers and carers who are determined to bring BRAF to the front of researchers and oncologists minds.