A blind Leeds student feels 'not taken seriously' by the NHS as a watchdog said services were 'failing to communicate properly' with many disabled people.
Connor Scott-Gardener, 28, said he is often sent letters from NHS services he cannot read despite having raised multiple times he needs communication via an online format and in Braille.
Healthwatch England has said the communication failures range from blind people being given paper forms to fill in to deaf people being told to book appointments over the phone.
Click here for more news and stories about the NHS
Connor, who is studying for a masters degree at the University of Leeds, told LeedsLive: "I've raised it at appointments, I've raised it when I know I'm going to get an appointment letter.
"Sometimes when I know I'm getting test results I tell them I don't want them in a letter - I need them in an accessible format. And the response is often 'we don't have the facility to produce that'.
"There's a sense that they're not viewing disabled people's access needs as equally important to anyone else's. If they're like 'oh well someone can just read it to you'. For anyone else that wouldn't be acceptable. For anyone else it is acknowledged that healthcare communication should be private and we have a right to confidentiality.
"But no one seems to recognise that with disabled people."
Healthwatch England have said people with additional communication needs are not being given equal access to care by two-thirds of NHS trusts.
The NHS is under legal obligation to provide patients with information in a way they can access it - Healthwatch England have called on the health service to meet this obligation.
Strictly Come Dancing champion Rose Ayling-Ellis, who is deaf, told the BBC in January that she has to bring a family member to doctor's appointments if there is no interpreter.
Can't see this survey? Click here
She added: "I don't want to do that, I want privacy."
Healthwatch England surveyed the experiences of 6,200 people with NHS communication between April 2019 and September 2021.
It found that many blind, deaf and disabled people were especially affected by NHS service changes during Covid.
In some cases, deaf people said staff had tried to talk to them by shouting, and others said services had been unwilling or unable to provide them with support.
Like Connor, many of those surveyed then felt they had to share their private health information with family members.
"Some aspects of the NHS clearly do have the facility because I've had GPs who can communicate via text, so that inconsistency between departments is difficult," said Connor.
"It's exhausting because there's a constant need to advocate. You don't just file your preferences, you have to have the conversation every time you see a specialist. A lot of the time they say there's nothing they can do and then you have to come up with solutions.
"It takes longer. I have to scan letters using my phone, and hope it scans them properly so I get the correct information. It's just an absolute waste of my time.
"It takes so much longer, and if it doesn't scan properly I have to find someone to read it to me, which completely violates my rights to confidentiality.
"It's often the fault of healthcare professionals - they're working with a system and aren't usually responsible for the process of sending the letter out once they've typed it up. I don't blame them but there's this kind of feeling that if you do report it they say they'll take your complaint seriously and then nothing will happen."
NHS England created the Accessible Information Standard in 2016, a legal requirement to make sure health services are meeting communication needs to all patients.
Healthwatch warned only 35% of NHS Trusts fully complied with the requirement.
Freedom of information requests found that a quarter of services didn't record patient communication needs or only did it sometimes.
Just over half reported asking patients about communication needs and only 57% regularly shared communication needs information with other health services.
Connor said he would love to see systems updated where they need to be to allow communication preferences to transfer over more easily, as well as more training for staff in how to file communication preferences.
He said: “I feel forgotten, ignored and not taken seriously.
“All I’m asking for is consistency, training on accessible information for staff – a few minor changes would make a world of difference to people like myself.
“I want to be able to take responsibility for myself, and good accessibility gives me the choice and freedom to do that. When it’s accessible, there’s nothing I can’t do.”
The NHS is currently reviewing the Accessible Information Standard.
Sir Robert Francis QC, chair of Healthwatch England said: “Our findings show clear evidence of a failure to protect the rights of our most vulnerable patients to accessible information and communication support through poor accountability across our health services.
Enter your postcode to see local issues near you
“Health and care services are legally required to follow the Accessible Information Standard, yet currently there is no effective mechanism for holding them to account on how they put it into practice.
“People want clear, understandable information to enable them to make informed decisions about their health and care and get the most out of services.
“This research shows that health and care services must act to ensure no-one is excluded from access to healthcare because of their communication needs.”
A spokesperson for the NHS in England 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 Accessible Information Standard, including how to better ensure that people’s communication needs are met.”
To get the latest email updates from LeedsLive, click here.
