When medications are necessary but not sufficient…

I love the question “I’m really interested to hear what things you have been doing or have tried already to manage your [symptom]?”

I always share it with medical students when I am lecturing, and use it a lot in my role as a self-management coach, when supporting individuals. But recently, the answers I have received in conversations locally have made me question our approach and thinking as a system to managing pain. It was summed up for me in a conversation I had with someone who wanted to manage their pain better. I asked what they had done already to try and manage the pain and a list of medications followed. After asking them about what other ideas they might have about how to manage the pain, I asked if I could share some ideas that other people have found helpful. After they agreed, I mentioned things like breathing and relaxing techniques and pacing, as they hadn’t been brought up in conversation so far. With all the ideas summed up, I asked what the person’s thoughts were, and their answer left me shocked…

I don’t think the suggestions you made will work, because if they did work my doctor would have suggested them to me already!

What to learn?

Source: The Guardian

Recently, I have been given the opportunity to review the syllabus and course specification for a pharmacy Masters course in the UK. A opportunity I feel very privileged to have had, but a task that was far from easy . . .

As I scoured through the specification, the objectives and outcomes, I was struck by the enormous amount of ground work and background the students were given in their first year, to build upon in subsequent years. Thinking back to my experience at medical school (albeit a course at a University with an unusually strong focus on academic science), I recall so much detailed biochemistry, pharmacology and anatomy, much of which was not needed directly during my brief stint of clinical training, but which provided the building blocks for the later learning.

UCL Lunch Hour Lectures

I have recently discovered the UCL Lunch-hour Lectures - 40 minutes of fascination over lunch! Last week I listened to Nick Barber (nick.barber.org) talk about medicines - "Can't take, won't take - why patients don't take their medicines", and it was the best lunch I have had for a while!

In addition to being fascinating, Nick presented it in such an engaging way - using my favourite tool, patient story and personalising it! For example, he opened by rephrasing the title from patients to "we", since we are all patients, so brought it home and made it relevant!

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!