A blind campaigner has said she can't get the eye clinic at one of Newcastle 's hospitals to provide her with letters in braille.
Hazel Hyland, 44, was born with glaucoma and is registered blind. She is a regular attendee at the RVI' s eye clinic, but told ChronicleLive that, even though other departments at the hospital have been able to provide appointment letters in braille, the eye department had not been.
She said she has continuously raised the issue - which has even seen her miss important appointments over the years.
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This comes as the Royal National Institute for the Blind joined with other charities to demand the NHS nationwide improves its record of implementing the Accessible Information Standard (AIS) - which was brought in in 2016 and should mean all NHS organisations offer information such as letters in the necessary formats for those who need them.
Along with deafness charity SignHealth among a number of partners, the RNIB has produced a report highlighting how the NHS needed to take "significant actions" to improve equitable access to health services.
According to a survey the charities carried out, only 11% of patients whose needs should be covered by the AIS "have equitable access to the NHS".
The AIS states: "All organisations that provide NHS care and / or publicly-funded adult social care are legally required to follow the Accessible Information Standard (AIS).
"The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss."
The NHS both locally and nationally has said it is working to ensure the AIS is implemented.
But the coalition of charities involved in the report said there was a "widespread failure" to implement this - and that more than a third of healthcare staff had - at most - only received training about the AIS once.
Hazel, from North Kenton, explained how a lack of accessible information had real consequences for her.
"I have got Glaucoma and various eye conditions. I was one of the first people in the country campaigning for the AIS to be created - way back in around 2012. Since then I've been trying to say to the hospital: 'This is where you can find the information.'
"They say they are aware of the issues, but it's not happening. It's unbelievable - you'd think the eye department would be one that'd be on board with this."
"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."
Hazel was in hospital during 2021 with Covid - and she has had lung function checks. That department, part of the same hospital, was able to make the adjustments she needed. "As soon as I raised it, they were able to get things in braille.
"A lot of information sharing needs to be done. Staff need to know where to find the right information about the AIS. As a campaigner I feel this needs doing, and it really needed doing ten years ago."
Phil Ambler, England County Director for the RNIB added: "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."
The issue is similar in the Deaf community, and Abigail Gorman - policy and public affairs manager at SignHealth - continued: "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."
A spokesperson for the Newcastle Hospitals NHS Trust said: "We are currently working with local organisations and partners to explore better and more consistent ways to communicate with patients who have a disability, such as a visual impairment, which includes mobile apps and digital communications.
"Our Newcastle Hospitals website includes accessibility functionality, such as ReciteMe, zoom, and navigation using speech recognition software and our PALS team can also provide support to patients."
An NHS spokesperson said: "All NHS services have a legal duty to provide clear and appropriate methods of communication to ensure that patients, service users and carers understand everything they need to about their treatment and care."
NHS England is currently reviewing the AIS and investigating how to better ensure that accessible communication needs are met.
