When I was diagnosed with Syringomyelia (a neurological disorder of the spine) in early 2015, I felt life had spun me on a heel. A growing ‘molehill’ of assorted health niggles had suddenly turned into what felt like a ‘Chronic Illness mountain’.

Following the news I went through a period of re-adjustment, as I sought to make sense of the condition and understand it better…

Once, our sole source of information on any diagnosis – aside from the valued advice of our Healthcare Professional – was often a few leaflets handed to us at the end of a consultation. We would read and absorb them, then learn little new between medical appointments unless there was a feature on TV, a charity awareness campaign or your neighbours-brothers-daughter had a similar medical history and passed you back some nuggets of wisdom. These days, many people immediately turn to the internet and search for their own data and advice – putting themselves in the driving seat of fact-finding. Indeed, the Department for Health and NHS (in the UK) seem to be increasingly moving towards online – and therefore widely-accessible – forms of information dissemination, such as though the NHS Choices website. Knowledge is power…

Yet almost contradictorily, we are often warned about the dangers of self-diagnosis, and the feared phenomenon of “Cyberchondria”, (described as “the excessive use of internet health sites to fuel health anxiety”[1]), which has been with us since the early years of the World Wide Web. As anyone who’s ever googled their symptoms will know, there’s some very poor-quality and scary information lurking out there in not too distant corners of the internet. In many ways our grandparents’ generation was right – ‘Doctor knows best’.

Soon after my diagnosis, I realised I was in a predicament… How could I quench my natural curiosity about my health conditions, my need to know I was looking after myself in the best possible way, whilst at the same time ensuring the information I was gathering was genuinely helpful and to be trusted? Also, how could I become knowledgeable, without finding myself becoming illness-obsessed? There was something that felt ‘off’ in being too self-interested, too focused.

I worried about sounding a little too well-informed when talking to Health Professionals. Despite the fact these people are there to help me, in consultations I would find myself using slang terms (when I fully understand the medical ones), and not venturing forth my own well-researched theories (just in case I sounded like a hypochondriac, wasn’t taken seriously, or appeared foolish).

In everyday life, our support-network often consists of friends, relatives and acquaintances who are interested in us and our ongoing life- and health situations. These tend to fall into two categories… Trusted folk who both let us offload our concerns and offer heart-felt advice, and others who enthusiastically offer (sometimes poorly judged) guidance, quite unsolicited!

Sometimes casual chats can lead to the discovery of something hugely helpful: a recommendation for some helpful reading, details of a handy health-gadget, or mention of a local Support Group. Occasionally though, people’s desire to help outstrips the knowledge they have about you or your illness. They might feel passionately that they need to tell you about a particular supplement, certain type of exercise, or the success a work colleague has had with a particular drug. Their heart may be the right place, but they just don’t know enough about your unique situation to provide rounded, truly helpful suggestions. They also have no idea how much research / consultation / sharing / experimentation / soul searching – even at bare minimum levels of proactivity – you do in order to help yourself and cope with your condition. Their oversimplifying of the situation might feel frustrating – or even insulting! You’re delighted they are interested and motivated to want to help, but their suggestions don’t necessarily mesh with all your own experience and knowledge. Sometimes these conversations can be hard to deal with.

Chatting to a friend yesterday (an experienced Nurse and a valued source of wisdom), recounting one such experience of ‘friendly advice’, I told her how the experience had left me feeling shaky in my own shoes – did I really know what was best? She introduced me to the concept of the ‘Expert Patient’. In her words…

“No-one knows how your illness affects you more than you. No-one knows how to manage your symptoms better than you. You are an expert in your own disease process – you are what is known as an Expert Patient, because you live with it all day every day”.

Hearing this was a revelation! At once she had both alleviated my fears of being just a little too interested in my health for my own good, and empowered me to feel uniquely-placed to search-out help, information and advice from the very best sources.

So what does being a Expert Patient entail? I began my research…

Whilst the concept of Self-Management may be nothing new, the term ‘Expert Patient’ was coined by David Tucket and colleagues at the University of Cambridge in the mid-1980’s. He argued that medical care could improve if doctors accepted patients as experts of their own medical disorders [2]*. As the publication ‘The Helix’ explains…

“The doctor is an expert in biomedicine; the patient is an expert in his or her own life, goals, priorities, beliefs, and choices. Humane medicine happens when the role of both is given value” [3].

Early trials of the NHS’s ‘Expert Patient Programme’ in 2000’s was based on the research of Professor Kate Lorig of Stanford University (herself a chronic disease sufferer), and her Chronic Disease Self-Management Programme. This also mirrored work being independently done by various representative organisations, such as the MS Society [4].

The NHS doesn’t have an official definition of what exactly an Expert Patient is, but a 2004 article in the British Medical Journal summarises it as…

“a person who has been empowered with the skills, confidence and knowledge needed to play an active role in making informed decisions about their own health care and management of their chronic condition. [6]”

NICE have many reports on the subject and on the Expert Patients Programme, which they define as…

designed to equip people with long-term conditions to lead a healthy lifestyle; communicate with others more easily; take care of pain, tiredness and depression; use problem solving and action planning skills; and work better with professionals.”

After learning all this, I realised that there was an Expert Patient Programme course running in my local area (not branded as such specifically). A friend had forwarded me the details, but I’d decided it wasn’t for me as I was already doing all the things the course would cover, off my own back. It seems I was already an Expert Patient!

I now had a name for the way I managed my illness, and positive justification for my proactivity, my hunger for knowledge, my researching, experimenting and questioning.

In England, the Expert Patient Programme is run for the NHS by the charity Self Management UK. They describe Self Management as…

“…a term that covers a whole range of things you can do to help yourself live a better life if you have a long-term health condition, either a physical or mental condition. [7]”

and add…

“On average, people living with a health condition spend just 3 hours per year with their health care team; the rest of the time they are managing day to day life with that condition or their own – or self-managing.[8]” 

So what are the key skills, according to Self Management UK, that make you an Expert Patient?

On a point of support, my early research had led me to the websites of national and international organisations which represented people with my conditions. One of these contained a large collection of personal stories by others with the same condition, which were really reassuring to read. Even so, I found I still wanted to actually talk to people in the same boat. One day, whilst browsing a Facebook group about cookery, I suddenly thought ‘there must be all sorts of Facebook Groups out there…’, and a quick search brought up a few dealing with my exact illness. Through joining those, I have been signposted to others discussion groups. These forums provide a safe space to share experiences with and ask questions of hundreds of folk in similar situations, and are an absolute godsend!

I put the new Expert Patient frame of mind into action at a recent appointment with my GP. On debating trying some new medicine, I ventured forth the name of the drug I knew other people with my illness were using. This enabled him to do some quick cross-checking in his MIMS guide to find all he needed to know. For once I felt like I might have made his day a tiny bit easier, rather than adding to his workload with my request.

A recent consultation with my Neurosurgeon threw me a decision I wasn’t quite ready to take – to opt for surgery to try to correct impaired CSF flow around my brain, or not.  I had known an an operation might be on the cards, but had been expecting to be told that I either must have it, or didn’t need it. I put my Expert Patient hat on to make the decision, and it gave me confidence. After just a week or so debating what to do, I knew I had resolved to go forward with the surgery. Everything my Consultant told me rang true to what I had already read and heard, giving me great faith in his advice. I also knew where to find the additional facts, figures and anecdotal info’ to enable me to choose. Being an Expert Patient took a lot of the stress and worry out of making the decision.

It may be just a phrase, but becoming an ‘Expert Patient’ has given me a framework free of guilt, worry to work within, and a new confidence for dealing with all my illness has to throw at me in future.

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 [1] and [5]  ‘Expert Patient – dream or nightmare’ by Joanne Shaw & Mary Barker, March 2004, British Medical Journal: http://www.bmj.com/content/328/7442/723
[2] and [4]  ‘The power of information: Putting all of us in control of the health and care information we need’ May 2012, Department of Health: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213689/dh_134205.pd
[3] Science Museum Brought to Life, Exploring the History of Medicine: http://www.sciencemuseum.org.uk/broughttolife/people/expertpatients
[6] Christian Medical Fellowship ‘Triple Helix’ publication ‘Winter 2002’: http://www.cmf.org.uk/resources/publications/content/?context=article&id=1061
[7] and [8] http://selfmanagementuk.org/what-is-self-management

3 Responses

  1. Great post Nicki! I love the term Expert Patient and you certainly have become one. Unfortunately in France I have become more of an Expert Pain in the Arse Patient; it’s not something that is well-received here overall. Are you familiar with a website called self hacked.com ? You might find it interesting… xx

    1. Thanks Fiona. No I haven’t, but I’ll check it out, thanks 🙂

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