More than 750 people back Shropshire advocate's campaign to improve NHS support
Shropshire woman turns personal struggle into campaign for better care
Sophie West has spent the past two years advocating for people living with Postural Tachycardia Syndrome (PoTS) and other complex chronic illnesses alongside the national charity PoTS UK, recently receiving their Volunteer of the Year award.
Living with multiple chronic illnesses herself, Sophie has experienced firsthand how gaps in local provision, limited awareness, and lack of coordinated care leave patients struggling to access needed support. Over three years, her health has deteriorated significantly, and she is currently bed-bound with limited healthcare input.
Before becoming unwell, Sophie led an active life. She performed with local performing arts groups before graduating with a First Class Degree in Musical Theatre. She then pursued costume design and making for theatres and events across the country, contributing to costumes for the 2022 Commonwealth Games opening and closing ceremonies and designing costumes for "Rosie: The Musical" at Theatre Royal Drury Lane in October 2024.
These experiences prompted her to establish the STW Chronic Illness Collective, a community bringing together people across Shropshire, Telford and Wrekin to advocate for improvements to local NHS services. The group focuses on conditions including PoTS, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Gastroparesis, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Long Covid, Functional Neurological Disorder, fibromyalgia, endometriosis, adenomyosis, Polycystic Ovary Syndrome (PCOS) / Polyendocrine Metabolic Ovarian Syndrome (PMOS), autism, and ADHD.
The collective works collaboratively with local NHS organisations to improve access, coordination, and understanding of these conditions, aiming to close service gaps and strengthen local care.
The group is gathering evidence through an anonymous survey exploring healthcare access experiences. Over 750 people have already participated. Many respondents describe being told their symptoms were mental health-related, that they needed more exercise, or that normal test results meant nothing was wrong, often resulting in discharge without further support.
The survey takes approximately ten minutes to complete and closes June 30. Those living with multiple listed conditions can select the most relevant or complete the survey separately for each. The survey is accessible at: https://forms.gle/kdWsxFEwk6F1dLdJ7}