Report: Experiences of people living with Sjögren's syndrome
Sjögren's syndrome (also known as Sjögren's disease) is a condition where the glands that produce fluid, such as tears and spit (saliva), stop working properly. There is no cure, but there are treatments that can help manage the symptoms.
It affects approximately 0.6% of adults in the UK, and the average age people get diagnosed is 50. 90% of people diagnosed with Sjögren’s syndrome are women.
Five women from Gloucestershire spoke to us about what it's like living with the condition, and the difficulties they have experienced in accessing care and treatment locally.
We heard about:
- Delays and challenges in diagnosis
- Lack of awareness among healthcare professionals in Gloucestershire
- Lack of access to specialist care in Gloucestershire
- Impact on daily life and mental health
- Emotional experience and need for support
Download our full report below.
Downloads
Gloucestershire Integrated Care Board have responded to our recommendations and said:
"Thank you to Healthwatch Gloucestershire for raising awareness of Sjögren's Syndrome and how it affects people with NHS Gloucestershire ICB.
"The ICB has taken the opportunity to discuss this report with primary and secondary care NHS colleagues as well as members of the medicines team within the ICB to develop a combined response to the recommendations related to feedback from people diagnosed with Sjögren's syndrome."
Read the full response by downloading our report.
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