Karen Graham: Listen to patients to keep them informed

Karen Graham is Public Involvement Advisor at the Scottish Intercollegiate Guidelines Network (SIGN), part of Healthcare Improvement Scotland.

Karen Graham is Public Involvement Advisor at the Scottish Intercollegiate Guidelines Network (SIGN), part of Healthcare Improvement Scotland.

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We know there are huge benefits to patients, the public and services if people are at the heart of the care they receive.

It sounds such a simple thing to do. But in reality it needs a number of things to be in place.

We need people to be aware that their voice counts in the care they receive, we need the right attitude from health and care professionals, the right policies and support in place for both patients and ­professionals, and an understanding of the importance of listening and ­acting upon what’s heard, to name but a few.

But one additional 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.

At Healthcare Improvement Scotland, a part of our organisation, called SIGN, produces advice 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.

Since 2007 we’ve placed increasing importance on producing 
accessible patient-friendly 
versions of our advice that help inform patients about their own condition and the care options open to them.

It is an ongoing process. Ten years later, we continue to learn how to communicate effectively using words that patients 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, patients empower us to help to empower them.

Recently 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!

They gave us insights about how important it is to be told they had autism; their need to understand what the diagnosis means; the ­benefit of providing both ­verbal and written information; they wanted information they could read ­themselves to help them to understand and they wanted to be involved in discussions about their care.

From our conversations, it was clear that a patient version of our advice was a must.

By producing this information we would be giving young people access to the vital information that they were missing. Our information would give them the opportunity to understand autism and help them to take part in decisions about their care.

But it wasn’t just the right words that were needed: the right presentation was important too.

Based upon their advice, we ­created chunks of text; bullet points; attractive colours; graphics; ­personal quotes to help people relate to real life experiences; and signposting to further sources of information.

It may seem an obvious point, but it is so important for all of us working in health and social care to 
provide patient friendly information. As an organisation, the more patient versions we produce the more it becomes apparent just how helpful advice is to everyone ­concerned in providing care.

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 passively 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, you can ­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.

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