I've got a long-term condition: get me out of here!

16 April 2013

Graham Kramer

Imagine you will no longer be allowed to live your life the way you have been used to. Instead you are to live in the jungle where you will remain for the rest of your days.

You face an unfamiliar landscape that is frightening, complex and seemingly impenetrable. You lack knowledge and understanding of what you may encounter and how you might cope. You will meet unfamiliar people, many of whom are helpful but speak in a strange language. You will have to renounce old habits and adapt to strange diets and routines in order to survive.

This scenario is akin to being diagnosed with a long-term condition.

The medical approach to the jungle is to dispense malaria tablets, immunise against yellow fever and invite you into an aid post every six months for a check-up to ensure you are not developing complications of jungle living. This will improve survival rates, is undeniably important and deserved by us all. However, it does little to actually help you live well and develop a workable mastery of jungle life.

A few may take on this challenge with relish; the Bear Grylls and Ray Mears types among us. They are like expert patients. But for the vast majority of us, it's going to be overwhelming.

So where would we start? We would probably like to have a three-week survival course delivered by experts in jungle living. At best, most will get a few hours of structured education delivered by those well meaning, strange-talking inhabitants of the aid posts with their restricted concept of ‘living well in the jungle’.

We may be given equipment to check our health status, reassure ourselves in between aid post visits and alert ourselves to early problems. We may want a guide book but this is often written by aid post workers, in complex language, and overly focused on avoiding the medical complications of jungle living. Better is a survival guide (care plan) that points out how to recognise signs of impending complication, what to do and how to get help. Helpful, but not helpful enough for those with difficulty understanding the language, perhaps can't read or for those that don't want to know.

And what of those of us who are just too overwhelmed to accept the task? We will need emotional and psychological support, encouragement from friends, family and peers experienced in jungle life. We will need this long before we can contemplate the guide books, survival guides and equipment which, if thrust upon us too soon, might increase our fear.

Some will struggle to live well even if the jungle environment is familiar: those with little resilience, oppressive social concerns, poor supportive relationships, mental health issues, learning difficulties, declining cognitive function or those burdened by other health problems. These people wouldn’t fare well in the jungle – likely to succumb to its dangers and less likely to survive. With little support they will be helplessly dependent on the aid posts who will struggle to meet their needs.

Fortunately the jungle does contain a rich community of helpful dwellers who are supportive and knowledgable about living well and survival. However, these people are difficult to find, often unknown to the aid post workers and they’re found by chance – or not at all.

Sound familiar? I think that this jungle analogy really helps us understand the support needed by people with long-term conditions. At the outset people need emotional, psychological and peer support that includes family, friends and carers, in addition to strong relationships with their professionals. Structured education that caters for people's abilities will be essential but preferably delivered with expert peers and not solely by healthcare professionals.

People may feel supported and motivated by resources in the community but these need to be easier to find. IT and social media need to act as the jungle’s ‘bush telegraph’ to make resources visible and people networked, not just with each other but also with their professionals. These resources should be varied and aim to help people live well, share experiences and help them to find meaning in their new environment.

We need to think about re-landscaping the long-term conditions jungle. It has become overgrown with complexity. We need to have a serious think about how professionals can work in partnership with people and their wider community to prune things back and create a simpler, clearer and more engaging landscape.

Graham is a GP and National Clinical Lead Self Management and Health Literacy, Scottish Government, www.twitter.com/KramerGraham.

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