We know there are huge benefits to patients, the public and health and care services if people are at the heart of the care they receive.
To achieve this, one element that is crucial is the importance of finding and using the right words that help build a meaningful connection between people and their care givers.
SIGN, part of Healthcare Improvement Scotland, produces guidelines for health and care professionals in Scotland on the best treatments that are available for a range of conditions, including asthma, heart disease, various forms of cancer, ADHD and a number of mental health conditions.
“For some time we have understood to the need to ensure patients and the public understand the guidelines. And since 2007 we’ve placed increasing importance on producing accessible patient-friendly versions of our advice that help inform people about their own condition and the care options open to them.”
Recently, we produced information for people living with Coronary Heart Disease (CHD) or who are at risk of CHD. Our information sought to inform people about their condition and empower them to take responsibility for aspects of their health.
Here are a couple of quotes from people living with CHD about the information we provided:
“I’ve never seen this kind of thing and it helped me understand. I’m at high risk of a heart attack so I’m really clear about what I can do now to be a bit healthier. It’s quite hard to eat the right things and get your exercise but this is realistic and gives helpful tips. My GP makes me feel like I’m to blame, but this explains things well.”
“After reading this I felt I would be more in control of my health. It has everything you need to know. I think this is really good information so you can then chat to your GP about it all. The style it is written in helps people to feel in control and you’re not getting told what to do.”
Patient versions of guidelines can act as a discussion aid to promote shared decision-making. Whether a person has autism or is being treated for a heart condition, people want to know that they have all the necessary information to make decisions about their care. Without support from accessible and reliable health information, it’s almost impossible for people to understand and take part in shared decision-making.
In 2016 we produced an advice booklet for children and young people on assessment and treatments for autism, a lifelong condition causing difficulties with social and communication skills and behaviour.
We heard from young people with autism to make sure their views were reflected in the advice. We visited schools and spoke to young people about their experiences of living with autism. They also told us it was the first time they had ever been asked what they thought!
“We’ve now produced around 30 patient-friendly versions of our guidelines and we continue to learn how to communicate effectively using words that patients, service users and members of the public understand and relate to. It’s a two-way process: we learn from the people we involve in our work and they learn to take control of their condition. In essence, they empower us to help to empower them.”
The more patient versions of guidelines we produce the more it becomes apparent just how important it is that the advice is understood by everyone involved. Health and care professionals increasingly request copies of these booklets for their clinics and patient groups order them for their information packs.
I would like to say a big Thank You to all those who take the time to tell us exactly what they think, who let us know what it’s like to be them and help us to connect meaningfully. Together we’re shifting the focus of care from what is done to patients, to what happens in collaboration with them – with meaningful words at the heart of the bridges we build.
To read our patient-friendly advice on a range of conditions, visit our website www.sign.ac.uk.
Karen Graham is Public Involvement Advisor at the Scottish Intercollegiate Guidelines Network (SIGN), part of Healthcare Improvement Scotland.