Q&A with Mark Agathangelou, Lived Experience Trainer and patient advocate

You’ve got an extremely wide range of experience or work as a patient advocate, including membership of boards, running workshops and even founding a peer support group of your own. Perhaps you could begin by outlining how you first become involved in pain advocacy and what you see as its main function?

It all started for me with helping set up a support group in Camden for fellow chronic pain patients. ‘CamPain’ was both an attempt to meet the need for greater support but also an expression of autonomy and agency, an attempt to do something for ourselves proactively.

By chance, the newly appointed Patient Director of MSK Services in Camden met one of our group and came to a meeting and ended up recruiting several of us to her Patient Advisory Group. That was my first experience of patient advocacy within the NHS and it gave me a taste for lived experience activity generally. Later I joined my local GP Patient Participation Group then the Camden level PPG group, which
I now chair. Lockdown really accelerated things.

The person I had worked with in Camden, Cristina Serrao, had joined NHS England as a Patient Ambassador. She recruited me to join a group of Lived Experience Partners in two work streams: projects encouraging involvement and co-production; NHSE MSK.

This was very high octane, invigorating and intense work. It was extremely demanding but also very exciting and fulfilling. Having not worked properly for a long time due to my chronic pain I found myself very much in the thick of things. Fortunately, online meetings and my dictation software made it possible for me to manoeuvre around my chronic pain in order to participate. So over a period of about a year I went from being extremely inactive and unfulfilled to the opposite. It was a fantastic experience but also draining and daunting. I survived and it set me up to do a lot more!

What about life before patient advocacy? You had a a hand in the iconic Horrible Histories brand at one time, I believe. What did that involve and what (non-libellous) tales are you able to tell?

My life was highly disrupted, both in terms of education and work, after I developed chronic pain in the wake of a sports neck injury as a teenager. However a sustained period of improvement enabled me to get back into work and the opportunity to join a publishing house in the ‘part work’ industry (ongoing magazines that often come with a collectible item) arose. The Horrible Histories magazine was my favourite as I did history at University and fancied myself as a comedy writer. By the time I joined they had exhausted the books for material so we had to write new stuff which was great fun – devising silly jokes for kids about history. I remember writing the brief for a double page spread illustration of the Paris Commune, which looked incredible when drawn and coloured. Funniest incident was commissioning a scratch and sniff card evoking the smell of horse dung on a Boer war cavalry transport ship. When the sample bottle was opened in the office the stench was so strong that it cleared the floor. I was all set to attend the project-end fancy dress party as an Austro-Hungarian army officer but sadly it was cancelled. Would have been an interesting tube journey!

You’ve recently become involved in the work of the Beryl Institute, a patient experience
organisation seeking to integrate art as an expression of pain. How does that project work, and what do you think is the place of art in the understanding of pain experience?

The couple of years that have been involved with the Beryl Institute, a US-based patient experience organisation, has been fascinating. I’m a member of their international Global Patient & Family Advisory Board (GPFAB). There are people from Canada, Brazil, Singapore, Australia as well as the US and UK. Many of these countries share a similar healthcare system to the US, with private healthcare providers and lived experience partners known as Patient & Family Advisers (PFAs) who work within Patient & Family Advisory Councils (PFACs) in hospitals and clinics.

The systems are very different in terms of both of the healthcare and the way that the patient and carer voice is incorporated. I’ve heard about some excellent co-produced work being done in the US, especially around things like addiction services. The PFAC model also seems standardised, which is positive, but my sense is that the levels of patient and public involvement are probably higher in the UK, if more variable. I was surprised how little Americans knew about the NHS, having assumed it was globally famous and understood.

What was your burning ambition as a child?

I was army mad as a boy, I definitely would have liked to have had a military career. When I got slightly older I wanted to be a historian. Neither quite worked out.

What is top of your to-be-read pile at the moment?

I’ve been given Gabor Maté’s ‘When the Body Says No’ which apparently I should read but I might start with Alice Roberts’ The Celts, Search For A Civilisation for pure pleasure.

What piece of music is currently your ear-worm?

I recently discovered The Cure and I can’t stop listening to ‘Friday I’m in Love.’
Guilty pleasure?

I’m obsessed with listening to the Elis James and John Robins BBC comedy podcast – hilariously funny!

Thank you Mark!