Experiences of people living with Sjögren's syndrome in Gloucestershire

Healthwatch Gloucestershire undertook research about the experiences of people living with Sjögren’s syndrome, based on discussions with a local peer support group in Cheltenham in January 2026. Sjögren’s syndrome is a long-term autoimmune condition that mainly affects moisture-producing glands, leading to symptoms such as dry eyes and mouth, but it can also have widespread and serious systemic effects on the body. It predominantly affects women and has no cure, though treatments can help manage symptoms. 

Participants reported significant challenges in obtaining a diagnosis, often waiting between two and four years. Delays were linked to limited awareness among healthcare professionals, short GP appointments that focus on single symptoms rather than the whole patient, and misleading test results such as initially negative blood tests. Some individuals were wrongly told their symptoms were due to anxiety or menopause, which further delayed appropriate diagnosis and care. 

A key issue identified was a lack of awareness and understanding of Sjögren’s syndrome among healthcare professionals in Gloucestershire. Patients often felt that the condition was underestimated as being limited to dryness symptoms. As a result, some people sought private diagnoses or had to travel outside the county, particularly to Swindon, to access specialist care. This created additional barriers related to cost, distance, and accessibility. 

The report highlights limited access to specialist care locally, with patients frequently needing to navigate multiple services before receiving appropriate support. Inconsistent follow-up care and misdiagnoses in urgent settings were also reported. Treatment posed further issues, including reluctance by some GPs to prescribe certain medications, changes to prescriptions without consulting patients, and variability in treatment effectiveness. 

Living with Sjögren’s syndrome was described as having a major impact on daily life, with symptoms such as chronic pain, fatigue, and difficulty swallowing affecting routine activities. The condition also had significant effects on mental health, employment, finances, and relationships. Many participants described feelings of frustration, isolation, and loss of hope, particularly before receiving a diagnosis. Peer support groups were seen as vital sources of emotional and practical support. 

The report makes several recommendations, including increasing awareness of Sjögren’s among healthcare professionals and the public, improving early recognition and diagnosis by GPs, reviewing care pathways, and enhancing access to medications locally. It also encourages the use of “Jess’s Rule” to prompt reassessment of persistent symptoms and recommends better signposting to support organisations such as Sjögren’s UK. Multidisciplinary care involving dentists and opticians is also advised. 

In response, NHS Gloucestershire Integrated Care Board acknowledged the findings and outlined ongoing work to improve services, including strengthening specialist pathways, developing closer collaboration across specialties, and exploring local diagnostic capacity. While some awareness and resources already exist, the response recognises that further progress is needed to improve access to specialist care and reduce the need for patients to travel outside the area.