Why does accessible healthcare matter? - Karl's story

Last year we launched the Your Care, Your Way campaign to highlight that everyone should receive healthcare in a format they can access.  

We shared experiences from more than 7,000 people who struggled to access healthcare because they didn’t get the information they could understand and communications support they needed. 

Why is clear information important? 

We all expect to be involved in decisions concerning our health. But when it comes to treatment and support, some of the medical information shared with us can be complex, and if we don’t fully understand what we are being told, we can’t make informed decisions about the care we need or choose the treatment that is right for us. 

For people who have sensory impairments or learning disabilities, understanding complex medical information presents a barrier to access. The Accessible (AIS) Information Standard, introduced in 2016, gives disabled people and people with sensory loss the legal right to receive health and social care information and communications in a format that works for them.  

It means that by law, all publicly funded health and social care providers must fully comply with the AIS. However, there’s a growing body of evidence suggesting that this is not happening.  

We continue to receive feedback from people that they receive letters from NHS in formats they can’t understand or are denied communication support during GP or hospital appointments.  

Karl’s Story 

In 2018, two years after the AIS became law, Karl Proud contacted his local Healthwatch, Healthwatch Leeds, to tell them he was having ongoing issues accessing his healthcare information and communications.  

Karl is blind and relies on braille and assistive technologies to access information and communications about his health care and medical appointments.  

Karl told his Healthwatch Leeds, that while he receives phone calls or text messages from his GP, he often receives letters from hospital about his health appointments in inaccessible formats and that there is a general lack of consistency in how he receives communications from hospital.

To address the issues Karl faced with his communications from hospital, in 2021, the hospital removed his address from their system, replacing this field with “please don’t send letters, only contact by phone”. 

Unfortunately, letters to Karl were still printed and sent out but without his address. As a result, the post office could not deliver them, meaning communications containing Karl’s private medical information have gone missing or ended up at random addresses.  

Karl also encounters barriers when trying to rearrange his appointments. Despite his visual impairment, he is directed to a website that uses CAPTCHA technology. CAPTCHA systems require users to verify they aren’t bots by identifying images that meet certain criteria, meaning he has issues accessing the website. This barrier to access can be easily addressed as newer technologies provide audio CAPTCHA for visually impaired users. 

On occasions when Karl brings a sighted guide with him to appointments, medical professionals assume this person is Karl’s carer, and they start to talk to that person instead of Karl about his healthcare needs. This makes Karl feel intimidated and left out.  

What is Healthwatch doing?  

We understand the importance that accessible information plays in informing the decisions we make about our health and social care. That’s why we:  

• We have recently written to NHS England to remind them to publish the review of the Accessible Information Standard.

• Local Healthwatch is writing to their local Integrated Care Services (ICSs), as they now have commissioning accountability, to ask them to ensure they have the right systems and policies in place to support people with communication needs and to make sure that they are prepared for the implementation of the revised Standard.