A service based on kindness and respect: the health experiences of women with long term conditions in York

Healthwatch York carried out a review of women’s experiences of living with long-term health conditions, hearing from more than 110 women, including 78 survey respondents. The report focused on conditions that disproportionately affect women, including ME/CFS, endometriosis, osteoporosis, Ehlers-Danlos Syndromes (EDS), fibromyalgia, PoTS and PMOS/PCOS. A consistent message was that women wanted healthcare professionals to listen to them, believe their symptoms and treat them with dignity and respect. Many reported experiencing delays in diagnosis, dismissal of symptoms and being told physical symptoms were caused by anxiety or mental health issues. 

Many women described long diagnostic journeys, sometimes lasting more than 20 years, and significant impacts on mobility, mental health, employment and quality of life. Over half of survey respondents felt healthcare professionals did not listen to them, had limited understanding of their condition or failed to take their concerns seriously. Many reported carrying out their own research, relying on charities and support groups, and seeking private healthcare because they felt NHS services lacked expertise, support or appropriate referral pathways. 

Despite these experiences, women also highlighted examples of excellent care. Positive experiences were usually linked to clinicians who listened carefully, acknowledged symptoms, communicated openly and worked collaboratively with patients. Good practice included knowledgeable GPs, specialist clinics, supportive rheumatology services and healthcare professionals who recognised the complexities of living with multiple long-term conditions. These examples demonstrated that compassionate, person-centred care can make a significant difference to women’s experiences and outcomes. 

The report concluded that women’s health services need significant improvement. Key recommendations included implementing the national Women’s Health Strategy, reducing diagnostic delays, improving knowledge of women’s long-term conditions among healthcare professionals, tackling medical misogyny, improving continuity of care, coordinating treatment for women with multiple conditions, providing better support while awaiting referrals and ensuring services make reasonable adjustments for women whose conditions affect communication, mobility or attendance at appointments.