What if the NHS routinely used patient accessible language?

What if the NHS routinely used patient accessible language?

Why does the NHS routinely use medical language such as ‘Renal’ rather than ‘Kidneys’, and ‘Radiology’ rather than ‘X-ray’ in patient facing areas? 

What is in a name? Would an otolaryngologist by any other name still be able to treat your sense of smell? 

Making Health care professionals’ roles and the names of services easier to understand, remember and pronounce would aid patients in understanding and navigating the services they are using, help them to discuss their care, and may result in fewer missed appointments.

As a non-clinical NHS staff member and a fairly health-literate patient, I see the NHS as confusing and difficult to negotiate, and I wish that someone would translate it all into non-clinical language for me. Given the profusion of patient leaflets, websites, and books designed to help explain it all, it seems I am not alone in this. Recently I had a hospital appointment but the department I needed was not marked on the map, and the signs didn’t help me. I noticed in passing that there was a small sign for the phlebotomy department, and it made me wonder how many people wander around hospitals getting lost and are late for appointments, and how much the complicated names of the departments and services make this worse? What is it like for people who have difficulty reading or communicating?

The NHS wants patients to be engaged with their health, actively involved in healthy lifestyles or self-care and to work in partnership with their Health Care Professionals to enable Shared Decision Making “No decision about me without me”, however the language routinely used in healthcare services does not support this.

The 2014 WHO report¹ on health literacy shows that an inability to understand health information results in less healthy choices, riskier behaviour, poorer health, less self-management and more hospitalization.

A report by Rudd² assessing US healthcare environments described them as having a high literacy demand, and a recent report from an RCGP-led health literacy workshop³ included a call for “clear signage avoiding jargon and using lay terms whenever possible, for example ‘heart section’ rather than ‘cardiology department’”. The RCCG report included this personal communication from a GP: 

A patient referred for a chest X-ray didn’t have it done because he walked round the hospital and couldn’t find the department because the sign read ‘Radiology’. He was too embarrassed to ask for directions.

Instead of making leaflets or a website to explain the difficult language, why not change the language? Is there any benefit to holding onto the medical terminology when naming services?

There have been recent NHS standards⁴ on accessible information published, which state that they should show respect, understanding and accessibility: “due to the complex subjects we deal with, the words we use need to be as simple and accessible as possible. This means they need to be: free of jargon; free of acronyms; and free of overly technical language.” However we know that the NHS printed health information currently in circulation is written at too complex a level for 43% of working age adults (16-65 years).⁵

NHS Patients in England should now be able to request access to their GP medical records online, but how many patients are able to understand them? Hospitals often give out discharge summaries to patients full of abbreviations, medical terms and short-hand. What is the point of this if the patient or family or carers can’t decipher them?

So what would the NHS look like if made easy to understand for non-clinicians?

When we are invited to an appointment it would be obvious from the letter sent what it is for, and what it will entail. The signs and maps will use the same easy to understand names for the departments to help us get there.

In the consultation we will be told about any results, tests required and what will happen next in the same way as usual, but patients would then get any further follow up appointments for tests or clinics using the same language, or will have a patient-friendly summary included.

When we have to go for a blood test we will not need to know that it is the phlebotomy department we need to find – it will be called something straightforward like blood tests.

We will be told who we will see, and what they do, requiring no prior knowledge such as why some doctors are called Mr or Miss, and it will be made clear that if the clinic is covered by different staff that we might see someone different next time, and we will be given information including their names after each consultation in case we need it to ask a question or complain.

If we use other services we will be able to tell them about the problems or treatments we have had in our own words, rather than trying to remember and say the technical terms, and this will be perfectly fine.

What difference will this make?

• Patients (including me) might find it easier to understand what appointments are for and be better prepared for them.
• We might be more likely to be able to communicate details of our medical history to others who need to know e.g. ambulance staff.
• We might be more able to get information or support for our problems, and feel more able to discuss them.
• We might feel more able to ask questions if we don’t understand something.
• We might be more able to understand our medical notes and more likely to access them, perhaps even collaborate by providing information e.g. blood sugar level monitoring.
• We might feel more able to point out errors in medical records and avoid mistakes.
• We might be able to look after ourselves or others better.
• We might be more likely to become active participants in our health and care and have better health outcomes.
• Additional benefits could be that non-clinical health and care staff (like me) will find it easier to negotiate the system too, and there may be particular benefits to certain groups who have difficulty with complex terminology such as those with communication problems, dyslexia, or learning difficulties.

I also fondly imagine the discussion and training required to implement these changes may also result in more of a focus on inclusion, and improved communication between Healthcare Professionals and patients overall.

Importantly I think that these changes would send the message that the NHS is run for the benefit of the patients rather than the staff, and signal that patients are equal partners who are included and respected, as set out in the NHS vision:

“We want everyone to have greater control of their health and their wellbeing, and to be supported to live longer, healthier lives by high quality health and care services that are compassionate, inclusive and constantly-improving.”

1.    WHO Health literacy: The solid facts 2014

2.    R. Rudd Navigating Hospitals: Literacy barriers, Literacy Harvest 2005

3.    Health Literacy Report from an RCGP-led health literacy workshop June 2014

4.    SCCI1605 Accessible Information – the ‘Accessible Information Standard’ 2015

5.    Department for Business Innovation and Skills. The 2011 Skills for Life Survey: a survey of literacy, numeracy and ICT levels in England. BIS research paper number 81. London: DBIS, 2012

     Zoe Ashton

Submitted to the Kings fund "the NHS if" competition November 2016