Shocking experiences of blind patients lead to improved cervical screening standards
Blind women in Scotland have reported distressing experiences when attending cervical screening appointments, with some describing procedures as “rough” and “painful,” and feeling uninformed and unsupported throughout.
There are over 180,000 people with sight loss in Scotland, of whom 60 per cent are women, yet many say their needs are still being overlooked in routine healthcare.
Kirin from Edinburgh is registered blind. Reflecting on her experience attending a cervical screening appointment she said,
“I only went once, and it went disastrously wrong. It was very painful. I didn’t know what was going to happen, or when it was going to happen. I have not and will not go back. The nurse took no time to explain what was going to happen; or what the procedure entailed. Having to position myself on the table with no sight was incredibly difficult.”
On average, six women in Scotland are diagnosed with cervical cancer each week. While it is often preventable and treatable with early detection, uptake of cervical screening, previously known as a smear test, can be affected by how accessible and inclusive the service is. Offered every five years, cervical screening aims to detect the Human Papilloma Virus (HPV) or changes in cervical cells before they develop into cervical cancer.
Leading sight loss charity RNIB Scotland has found that blind and partially sighted individuals often face a range of barriers- from inaccessible invitation letters to being subject to the procedure without being informed or reassured. These negative experiences of cervical screenings can dissuade women from attending further appointments, which can delay the detection of issues and lead to poorer health outcomes.
The charity, alongside other organisations, has been working to inform the processes which invite women to have a screening, including the need for accessible letters and information. The procedure itself is also often inaccessible. Another woman, reflecting on her experience, described how distressing the process can be when communication and care are lacking:
“I had my tests conducted by a nurse who was rude and rough,” she says. “I was told not to be stupid, and that I was behaving like a child. The nurse did not explain to me what they were doing, and this was unpleasant enough that I haven’t gone back to have another screening.”
Over various stakeholder meetings regarding the Equity and Screening Strategy- which seeks to make screening accessible for all, the experiences of blind and partially sighted individuals, and those with other disabilities, were shared with Public Health Scotland and Healthcare Improvement Scotland.
There was further consultation to write a new set of cervical screening standards which were published by Healthcare Improvement Scotland in March. These now include recommendations to ensure the provision of accessible information, and that ‘Training and education should cover supporting women to make informed choices about screening, taking informed consent and person-centred communication.”
Gillian Hallard, NHS Engagement Manager, RNIB Scotland says,
“When services are inaccessible, trust is broken, and people are pushed away from the very care meant to protect them. Ensuring screenings are person-centred and accessible isn't just about compliance, it’s about saving lives. We are especially pleased to see the standards reflecting the need for staff undertaking cervical screening to be compassionate and ensure women feel supported.
“RNIB Scotland are committed to working with health services to embed the voices of blind and partially sighted people into policy and practice so that everyone can attend vital screenings with dignity, understanding, and confidence.”
