Inaccessible information: a health inequality

Liz Williams, Policy and Public Affairs Manager of RNIB Cymru, shares the findings of their latest report, Make it Make Sense. 

Everyone has the right to access health information confidentially and independently. This includes being able to read the details of an upcoming appointment, fill out a form at a GP surgery or read a test result or diagnosis. 

But our research published in our report ‘Make it Make Sense’, found that health information is consistently provided to blind and partially sighted people in formats they can’t access. 

Our report shows: 

• One in three (32 per cent) blind and partially sighted people missed an appointment or had their healthcare affected because they didn’t receive information they could read. 
• More than half said they had received information about their healthcare from their GP (56 per cent) or hospital (54 per cent) in an inaccessible format. 
• Nearly nine in 10 respondents have never been asked by their GP or hospital about their communication needs. 

What does this mean for blind and partially sighted people? 

Safety risk 

Inaccessible health information is contributing to health inequalities and puts people at serious risk of harm. 

Participants in our research told us that not being able to read their own health information is a barrier to: 

• making and attending appointments,  
• understanding the results of a test, diagnosis or screening,  
• complying with medical advice, 
• preparing for operations or procedures.  

An emotional impact  

Blind and partially sighted people have told us about frustration, anxiety and depression they have experienced as a result of not receiving their health information in their required format. Others told us that they felt they had lost their dignity and were being treated differently because of their sight loss.  

Compromising confidentiality and independence  

Too many blind and partially sighted people are forced to rely on others to read letters and complete forms for them. 

They told us they felt humiliated having to disclose sensitive medical information to friends, family members or even strangers.  Our research highlights the unacceptable reality that many blind and partially sighted people don’t experience the levels of privacy and independence they’re entitled to. 

A barrier to care and a waste of NHS resources 

With one in three blind and partially sighted people missing an appointment, it’s clear that inaccessible health information is a barrier to timely care and treatment.  

As well as directly impacting people’s access to healthcare, missed appointments are a waste of valuable NHS resources. Each missed outpatient or GP appointment costs the NHS an estimated £160.  

With NHS waiting lists at record levels, it’s vital that health providers do all they can to ensure people can access their appointments.  

The solutions can be simple and cost effective 

Communicating in larger font or by email or text would help many patients with sight loss. Improvements to patient communication would also go a long way towards reducing wasted resources, maximising the capacity of the health service and improving outcomes for patients. 

What needs to be done? 

We want blind and partially sighted people to be communicated with in a way that makes sense for them.  

We are calling on Welsh Government and NHS Wales to work together to: 

• Develop a national strategy to review, update and fully implement the All Wales Standards for Accessible Communication and Information for People with Sensory Loss. 
• Introduce an IT system across Wales that automatically and routinely records and actions a patient’s required format. 
• Raise awareness of patients’ rights and staff’s responsibilities.  

Receiving information in an accessible format is your legal right 

It’s been 13 years since the Equality Act 2010 put a duty on public bodies to proactively ensure that people’s access and communication needs are met.  

It’s also been a decade since the Welsh Government became the first in the UK to introduce accessibility standards that required NHS services to provide all information to people with sight loss in their required format.  

If you or someone you know has received inaccessible information from NHS Wales, you can find out how to request accessible information or make a complaint on the RNIB website.