The power of sharing stories and shedding labels

‘Self-management’ and ‘patient activation’ have been buzz phrases for some time, but the evidence shows people with long-term conditions don’t always take control of their health.

But why is that, does it even matter and whose responsibility is it anyway?

NICE recommends everyone with diabetes undergo eight health checks each year (called, in true NHS–jargon style, ‘annual care processes’). They include: HbA1c (or average blood glucose levels), blood pressure, cholesterol levels, foot examination, BMI measurements and smoking status check.

All of these areas have a real bearing on people with diabetes, and can lead to serious, sometimes life-threatening, complications if not monitored correctly.

Yet, the National Diabetes Audit, published at the end of January, found just 38.7% of people with Type 1 and 58.7% of those with Type 2 had all eight checks in 2014/15. In people younger than 40, just 27.3% of people with Type 1 and 40.8% of those with Type 2 had all eight.

So who’s to blame? As Dr Partha Kar, a leading diabetologist and an Oyster clinical editor, said in his blog ( it’s time to stop playing the blame game.

“Fingers have been pointed at each other: lazy patients not having ownership, lazy GPs not bothering with care, poor communication from hospitals to GPs resulting in poor data transfer,” he wrote.

He went on: “I don’t have Type 1 diabetes, I don’t have the foggiest idea what it involves living with it day in and day out, I don’t have hypos, I don’t have to worry about my eyes – I am the last person to sit here and judge another person on why they haven’t had their care process done or not attended an appointment.”

Helpfully, the audit recommended people living with the condition attend their annual check appointments and that care providers “consider new systems that could increase engagement”. Not so helpfully, it doesn’t tell us how.


Getting to know your PAM

According to the Kings Fund, you can find out how engaged a person is with managing their condition through (cue more jargon) their Patient Activation Score (PAM).

“People who have low levels of activation are less likely to play an active role
in staying healthy. They are less good at seeking help when they need it, at following a doctor’s advice and at managing their health when they are no longer being treated,” said a report setting out the process and introducing the method.

“Their lack of confidence and their experience of failing to manage their health often means that they prefer not to think about it.”

The score isn’t static and people can move up the PAM scale by learning the skills and gaining the knowledge they need to take care of themselves. In this model, it is the healthcare processional’s role to ‘empower’ the person in front of them to set realistic, achievable goals, thus moving up the scale.

Once someone is engaged, the theory goes, they are more likely to be open to education, and capable of taking it on board.


Education, education, education

The diabetes audit said 32% of people with Type 1 and 75.8% of people with Type 2 diabetes were offered a place on a structured education course in 2014/15. Yet just 5.3% attended.

Diabetes UK launched its Take Control campaign last year, calling for everyone with the condition to have access to a relevant self-management course.

“Most people with diabetes only spend around three hours a year with their doctor, nurse or consultant. For the other 8,757 hours they must manage their diabetes themselves.

“Managing diabetes day-to-day can be difficult. This is why it’s important people have the knowledge and skills to manage their diabetes so they can live well and avoid complications,” said the campaign website.

But, as we see from the audit, the problem is not necessarily people not being offered the course, but people not taking up that offer when it’s made.

And that, it could be argued, is because they are not engaged. Or activated. Or whatever other word you want to use.


Removing the ‘patient’ label

We publish a number of magazines, both for people with long-term conditions, including diabetes and MS, and the people who care for them.

Such projects are sponsored by industry: they offer a way for people to connect to each other, and through that, to their condition. The sponsoring companies find a way to build brand awareness and show readers their ‘values’. They can “give something back” ­– and that something is engagement.

The way they are funded means our magazines are quality publications and wouldn’t look out of place on any newsagent shelf. They don’t use the “patient” label, and they place real value on the real lives of the people they feature.

At Oyster, we are journalists and so we understand the importance of language and the power of stories.

Integral to the process is not defining people by their condition. The words “patient” and “disease” have so many connotations: “vulnerable”, “helpless”, “ill”. In short: “sick”.

But the people we work with aren’t sick patients, stricken with diseases: they are normal every day people interested in normal every day things. They just happen to be living with diabetes, with MS, with IBD etc.

What they want to read about is how other people have worked their condition into their everyday life, not how they have changed their life to meet the needs of their condition.

We know this because we take the time to get to know our readers and we ask them. Everything we publish has patient editorial input and has been checked and reviewed by the people who know what it’s like to live with the conditions we are writing about. They are a key part of the process. They are engaged.

The baffling use of jargon in the health service is another language-based barrier to “activation”. With so many acronyms and unpronounceable treatments and procedures, people can often feel overwhelmed and choose to give up rather than battle through them all.

We don’t blindly repeat the same old mumbo jumbo, because our readers have asked us not to. We help them understand what it is they need to know by translating complex messages into ‘people-friendly’ language.

Web and app-based information services and self-management tools help to break down these barriers further, delivering large volumes of information in a concise and easy to access format. Deploying technical solutions can help de-mystify the conditions we are writing about – we can use animation, video, and build in user interaction to check understanding. They keep up with the demands of modern life, allowing our readers to access information on-the-go.


Modern medicine

In a way, modern advances may have made self-management deceptively simple.

One of our readers, a man who has had Type 1 diabetes for 80 years, told me he was diagnosed in 1936 when he was four. (Incidentally, his mum was told he wouldn’t live much past his 20th birthday – times have certainly changed.)

He described an almost unrecognisable world of glass syringes, inch-long needles and using Fehling solution to test by boiling up his urine at regular intervals throughout the day.

Today, people don’t have to spend their whole lives thinking about their condition, so it might be easy not to give it a second thought: until a relapse or a complication rears its ugly head and they are forced to listen to their bodies.

As we are all too aware, there are long-term consequences of this approach – devastating complications can cause irreversible damage and are expensive and difficult to treat. Giving people everything they need to manage their condition with the support of their healthcare professional has to be top of the agenda.

And we all, that’s doctors, nurses, people living with long-term conditions and industry, share the responsibility of making that happen.

Published on: March 1, 2016