Blind and partially sighted patients air frustration of exhausting struggle to access healthcare

• Huge emotional stress of communication barriers adds to the pressures for disabled people of dealing with health issues
• Some patients avoid seeking medical care altogether because of previous poor experience of access deepening existing inequalities, coalition of concerned charities warn
• Only 1 in 10 patients with communication needs received equitable access to healthcare, despite the Accessible Information Standard being introduced in 2016

The findings show widespread failure to implement the Standard across the NHS. Over one third (37 per cent) of healthcare professionals surveyed said they have never, or only once, received any training linked to the Accessible Information Standard, despite it being introduced in 2016.

This led to significant health inequalities for disabled people, including situations which could put patients at serious risk through misdiagnosis, a lack of medication information, missed appointments and delays due to communication failures.

The report’s recommendations set out urgent steps required to meet the communication and information needs of patients with sight and hearing loss and other disabilities.

As part of the report, 714 disabled people with communication needs and 196 professionals from health and social care providers took part in an anonymous survey.

Three quarters of people with accessible information needs said they rarely or never receive health information in alternative formats, while 81 per cent of patients reported having a health appointment where their communication needs were unmet.

Hazel Hyland, who lives in Newcastle, and has glaucoma, said: “I have missed appointments at the eye clinic because I have not been able to read letters that have been sent to me, which has resulted in treatment being delayed. I asked for information in my preferred format of braille but they don’t seem to have much awareness of the Accessible Information Standard.

“I have good results with some other departments I am registered with sending me information in an accessible way but the department you would expect to understand – the eye clinic- don’t seem to get it.”

One NHS professional stated in the anonymous survey, “No training or resources, both in terms of people and tools people may need, have been put in place to support the implementation of the AIS.”

Phil Ambler, England County Director for RNIB said: “Attending a doctor's or hospital appointment should provide reassurance and make you feel confident about the healthcare you will receive. Blind and partially sighted patients encounter a series of obstacles which can ultimately put their health at risk. We need urgent action to get patients the information they need in formats they can read, and not another five years of missed appointments and incomplete information. Simple changes can make a massive impact.”

Deaf patients reported frequently encountering a lack of availability of sign language interpreters at health appointments, as well as the new challenge of masks for those who rely on lip-reading.

“Health is central to life, and yet people are currently being denied good healthcare due to poor access, leading to health inequalities. Many of the actions required to improve access to services, communication with healthcare providers, and long-term condition management are simple and cost-neutral, or cost-saving, if implemented correctly,” said Abigail Gorman, Policy and Public Affairs Manager at SignHealth.

The report calls for urgent measures to be taken to ensure people can access the healthcare they need:

• providers must deliver training to staff to explain the requirements of the Standard
• patient record systems must flag patients’ communication needs, alerting staff to book BSL interpreters or send alternative formats
• alternative contact methods for booking appointments or receiving test results must be provided which meet the needs of the patient
• strengthen accountability by including and monitoring information accessibility requirements in provider contracts

The full report and recommendations can be viewed here www.rnib.org.uk/accessible-health-information

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About RNIB

We are the Royal National Institute of Blind People (RNIB).

Every six minutes, someone in the UK begins to lose their sight. RNIB is taking a stand against exclusion, inequality, and isolation to create a world without barriers where people with sight loss can lead full lives. A different world where society values blind and partially sighted people not for the disabilities they’ve overcome, but for the people they are.

SignHealth is the Deaf health charity led by Deaf people at all levels of the organisation. We are dedicated to making sure Deaf people get equitable access to healthcare and we provide services to improve Deaf people’s health and wellbeing.

We have media-trained Deaf people who use British Sign Language to communicate, as well as access to registered BSL interpreters, ready to be interviewed to support this statement.

For more information about SignHealth, visit signhealth.org.uk and follow us on Twitter, Instagram and Facebook at: @SignHealth

Note to editors:

The Accessible Information Standard (AIS) seeks to establish a clear, consistent approach to the information and communication support needs of patients, service users, caregivers, and parents with a disability, impairment, or sensory loss. The Standard states that patients should:

• Be able to contact and be contacted by services in accessible ways, for example via email or text message
• Receive information and correspondence in formats they can read and understand, for example, in audio, braille, easy read or large print
• Be supported by a communication professional at appointments if this is needed to support conversations, for example a British Sign Language interpreter
• Get support from healthcare providers to communicate for example to lip-read or use a hearing aid.

SignHealth partnered with the Royal National Institute of Blind People (RNIB), Healthwatch England, Learning Disability England, Macular Society, Royal Association of Deaf People, Royal National Institute for Deaf People (RNID), Sense and Visionary to collect experiences from patients and health professionals across England for this review.