Two weeks, two conferences, lots of ideas, but one thing missing...

The whole 'pacing yourself' self-management malarkey is all well and good, until really interesting events start to appear in your diary.... Then it all seems to out the window and I go to two conferences in 8 days and physically pay the price. But it is a price worth paying, as I have been lucky enough to enjoy two fascinating and stimulating days, meeting a whole array of wonderful and inspiring people, although one key ingredient was missing...

When physiotherapy is more that just exercises

This week, Mental Health Awareness Week, the Mental Health Foundation is raising awareness of the positive effect of exercise and physical activity on mental well-being. Reading about this (it is really so much more than just endorphins!), I am beginning to realise that when the Chartered Society of Physiotherapy talks about "physiotherapy helps to restore function", it means more than the function of limbs, it means the function of me as a person, both mentally and physically.

I have been very fortunate to be seeing an excellent neuro-physiotherapist for the past nine months or so. I feel compelled to write about my time with her, our journey together, because I believe that out of all the healthcare professionals I have seen, her input and support has made the biggest difference.

The biopsychosocial model of disease

The biopsychosocial model of disease existed in my notes... an excuse to get out the colouring crayons and draw a diagram, but ultimately another collection of facts that needed to be digested then regurgitated in the summer exams, something to be fitted in around learning about the important stuff - the science.
But the biopsychosocial model has come alive for me recently, now I realise what an impact the later two components, psychological and social, can have on patients.

In the 1977 paper in Science, George Engel introduced the biopsychosocial model:

"The dominant model of disease today is biomedical, and it leaves no room within it's framework for the social, psychological and behavioural dimensions of illness. A biopsychosocial model is proposed that provides a blueprint for research, a framework for teaching and a design for action in the real world of health care."

Following some conversations on Twitter recently and from my own experience at medical school and now as a patient, I wanted to explore my thoughts on this model.

Identity Crisis - who am I?

Who am I?

A Chiari?
The 'interesting case' in cubicle 4?
123456789 (my hospital number)?
My doctors 10 'o' clock?
A rattling collection of flesh, bones, co-codamol and Fludrocortisone?
Me?

Who is me anyway? To be honest, since becoming chronically ill, I am not really sure.

My identity is the thing I have grieved for the most since becoming ill. All of us are like jigsaw puzzles with lots of pieces that all fit together to make us who we are.Until a diagnosis of a long term illness is thrown into the box! Then, mysteriously those corner prices that are the foundations for the rest of picture to build from go missing . . . And then bits in the middle disappear.

Measuring the subjective

Another post inspired by Radio 4....

I was listening to Women's Hour last week, and they were discussing heavy periods (something I thankfully do not suffer from) and the way they were classified as 'heavy'. Without wanting to freak out any male readers I may have, I feel compelled to explain this to make my point - a heavy period was measured by asking women to bring in tampons and pads and measuring the volume of menstruated fluid.

So why I am talking about a condition I don't have when I have plenty of my own to fill a whole blog?

The King's Fund Time to Think Differently

The King's Fund have recently launched a new campaign - Time to Think Differently - which is all about change in health and social care. Following #kfthink on Twitter, it is clearly an important topic, that is generating lots of interest! What I like most about the Time to Think Differently campaign is the fantastic collection of infographics they are produced, which you can view here. In particular, the infographic below is one the best I have seen summing up the relationship between LTCs and mental health:

Source: The King's Fund

It is so simple, but gets the message out loud and clear! I have eluded to the 'psychological and emotional side effects' of long-term conditions before, and much of this blog discusses the mental challenges long-term conditions present. Whilst my doctors have been attentive to my physical condition, my MRI scan results and my drug treatments, my mental health has been completed side-lined. I strongly believe that in order to successfully treat my physical conditions, my mental health needs to be addressed as well. It is really encouraging to see the reality of living with long-term conditions recognised at such a level - I hope it can be translated into more holistic care pathways.

This is, of course, just one angle of the diagram: some people have unrelated physical and mental health conditions; whilst others have physical conditions caused by their mental health conditions. Either way, I do hope awareness of the substantial overlap (however caused) will lead to better care in the long-run.

Incidentally, I am fast becoming a big fan of infographics - especially when I see such effective ones like this one!

What is Well-being?

'Well-being' has become such a buzz word in health nowadays, but what does it actually mean? 

That question stumped the audience and panel at the Tackling Long-Term Conditions conference in London last week (30th May). It is hard to find a single answer for something so personal, but without considering what it means, how can we develop healthcare systems that promote it? 

The concept of well-being came about in the middle of the 20th century when medicine had made significant progress in overcoming disease, and the idea of positive-health developed (Breslow, 1972). In response, the World Health Organisation re-defined health as 'physical, mental and social well-being, not merely the absence of disease or infirmity'. In a medical world set around pathology and science, that was hard to digest. Despite the campaigning of mental health and social care charities, the medical world can still be narrow minded on occasions with their definition of health. For over 40 years, definitions have been studied and analysed (Quality of Life and Well-being: Measuring  the benefits of sports and culture: Literature Review and Thinkpiece)

The haze around the definition of well-being might be responsible for the difficulties in measuring it, and therefore integrating it into modern healthcare practise. 

Cradle to Grave (Pharmacopoeia)
British Museum

For me, well-being incorporates every aspect of my life, health and illness. I think it can be summed up really well with the aid of one of my favourite pieces in The British Museum in London, Cradle to Grave (Pharmacopoeia). As a patient at the nearby National Hospital for Neurology and Neurosurgery (UCLH) round the corner in Queens Square, the British Museum offers a haven to loose myself in on those stressful appointment days - either killing anxious hours beforehand, or dealing with the aftermath of, appointments. Pharmacopoeia is one of my favourite exhibits in there, and I make sure to visit it every time I'm there. The exhibit is a collection of all the pills, injections, prescriptions, implants, scans and inhaled substances that an individual is given as a patient through their life. Interspersed between the medical paraphernalia are photographs giving a glimpse into the life of that patient as a person. Spanning several meters, it is a tribute to the medicalization of modern life. But it has a deeper meaning than that. . .

The images and souvenirs that punctuate the medical sotry tell a story about an individual, with friends, family, hobbies, emotions and history. This illustrates exactly what well-being is for me - the narrative that overlays our medical history.

My own Pharmacopoeia would have a large number of MRI scans, steroids, neural analgesics, nerve conduction test results, physio reports and many more things I have yet to have! But what I need to make sure are also included are an (at least) equal number of great memories, photos of smiles and laughter, souvenirs from days with friends, family parties and scenes of love and warmth. While there were plenty of these to balance the odd paracetamol BC (before conditions), I need to make sure I have enough to punctuate the drug/scan-filled years AD (after diagnosis).... I need to look after my well-being in the midst of psychical illness - a challenge I am going to rise to!

Life Impact Wheel

Wouldn't it be interesting (and possibly scary!) to know what the differences are between the patients perception of their their situation and the doctor's perception of it?
Doctors may be acutely aware of the health aspect of my life, but I wonder how much they appreciate the impact that has on everything else - finances, relationships, career, hobbies and friends...

Now I know doctors are human, and may well have been ill them  selves, or had close family members or friends suffer illness. At medical school I knew that your health impacted the rest of your life, but I didn't comprehend the significant of the impact of what doctors consider quite minor conditions. Neither did I appreciate it in the context of long-term conditions.

Making each party aware of what concerns the other could really help improve communication and team work between patient and doctor. Using a Life Impact Wheel could be a clear way to illustrate that . . .

Get both the doctor and patient to fill it in, marking on a scale from 1 - 10 the  impact the illness is having on various aspects of their life (work, happiness, social life, relationships etc.), and any discrepancies should be easy to see. The scale of the whole problem is also easy to see with this model - something that patients can find hard to convey to doctors.

It only takes a sheet of paper (or maybe a fancy app one day!) . . . but seeing the disease in the wider context of someone's life could make a significant difference. I'm not saying it will generate a cure, but it might help the doctor understand the disease and non-clinical ways in which they could help (or signpost to).

The Art of Effortless Living (Ingrid Bacci)

Someone whom I have enormous respect for recommended this book to me. I am ashamed to say how long it took me to actually sit down and read it from when I was first given it, but it was worth the wait..

Like many similar 'self-help' books, one certainly has to be in the right frame of mind to read, and benefit, from such books. It had slowly been dawning on me that the medical professionals were not going to come up with a quick fix, and that I was going to have a) learn to cope and b) take some responsibility to heal myself.  

In short, The Art of Effortless Living by Ingrid Bacci, is one of the most amazing and enlightening books I have ever read - it completely changed my perspective and attitudes almost over night! Clichéd, I know, but true! It was a complete breath of fresh air and opened my mind to new approaches to manage my health. It didn't hold the answers, but conditioned my closed scientific mind such that I could begin to explore on my own the impact of teh mind-body connection, the complex interconnectivity between my mental health and psychical health, and how I could help myself. A few phrases really stuck with me . . .

"When your body collapses, assume that there are emotions that need to be acknowledged."
 Like many patients today, I have been diagnosed with a handful of conditions, none of which the doctors seem to be able to explain relapses I have. Maybe in patients like me with a very large and complex medical history and several long-term conditions, relapses are caused by a 'last straw' phenomenon. All of these conditions predispose us to a flare-up or relapse, and bring us very close to the threshold for suddenly becoming very ill. What takes us over that threshold could be our mental health - one bad day too many, one bad meeting or difficult day at work - just pushes our already strained bodies over the edge into a relapse.
We as patients have the power to control that last straw and subsequently, maybe control more of our health than we thought possible!

"I needed to override the familiar program that I held in my mind for years, a program that identified my body with restriction, limitation and pain. By changing my program I changed my body."
Elsewhere in the book she talks about a patient she had who didn't know how to be 'well' because he constantly performed health checks on himself, monitoring his symptoms. This is so familiar for patients with  long term health conditions - but when the symptoms do disappear, this checking brings them back! There is the expectation to have them so they do remain. The idea that this is part of wiring system in our brains suggests re-wiring it could solve it! The power of the mind in long-term health conditions is more powerful than I think the medical community often realise.

If our mental power is so important and possibly just as effective as any multi-million pound drug from GSK, shouldn't we all take a little more care of it?

For more information on Ingrid Bacci's work, see www.ingridbacci.com - I would recommend her email newsletters!