Who is Barry Simner?

Barry Simner was a teacher in London for nearly twenty years before leaving to become a freelance screenwriter and playwright.  He came to live in Snowdonia in order to write and pursue his passion for mountaineering and was diagnosed with Fabry Cardiac Variant in 1990, a finding which eventually ended his climbing adventures.  2023 is the twentieth anniversary of his starting ERT under the supervision of his specialist at The National Neuro in London. Barry's daughter, Lowri, was born and grew up in Wales and is now an officer in the RAF. 

Barry is a prolific screenwriter and playwright, having worked on a collection of highly successful TV series including The Bill, Holby City, Peak Practice, The Vice and Midsomer Murders as well as the critically acclaimed Irish drama ‘Single-Handed’. He has also written for stage plays and is a twice runner-up in the Arvon National Poetry Competition. 

Below is an anecdote written by Barry, describing the best advice he was given early on in his Fabry journey.

"Whatever you do, don't let the doctors make you ill.”

An anecdote by Barry Simner

I was earning my living as a writer when I was diagnosed with Fabry Disease.  As a freelancer, I was lucky in lots of ways because I was my own boss. I didn’t need to ask for time off work and I could easily manage hospital appointments.  Once I was started on Enzyme Replacement Therapy, I could carry on writing with a drip in one hand and a mouse in the other.  I was lucky to be looked after by the wonderful team at The National Neurological Hospital and their support has been outstanding in every way.  Life has gone on and I like to think I’ve made the best of things.

“…we’re on our own facing an uncertain future.  We simply have to make the best of it.” 

But… there’s no doubt that the diagnosis I got one sunny, summer afternoon more than twenty years ago has changed my life in many ways.  I know I’m fortunate to be writing this and now to be invited to offer some helpful advice to others with similar conditions ought to be easy.  What do you do when you’re told you have a rare, incurable genetic disease?  I guess we all react differently but I’m certain of one thing that we all have to accept – in the end, we’re on our own.  We might have a wonderful family, loyal friends, a fulfilling social life or a great career but in the end, we’re on our own facing an uncertain future.  We simply have to make the best of it.

But if that sounds unhelpful or unduly bleak, I can pass on one bit of advice that I’ve kept in mind throughout my treatment.  It’s something I was told by one of the very first doctors I met.  As he was leaving my bedside after yet another scan, he turned and smiled, “whatever you do, don’t let the doctors make you ill”.  I smiled back but it took me some time to understand what he meant.  Surely the doctors were going to treat me and make me better.  Isn’t that what they’re supposed to do? Wasn’t the whole point of them to heal, not make me worse?

“The thing called the NHS is a vast bureaucracy and it’s easy to get swallowed up in it.”

But as I was referred from hospital to hospital, department to department, specialist to specialist.  After dozens of scans and endless monitoring, it began to dawn on me what he was saying – it was invaluable advice.  The thing called the NHS is a vast bureaucracy and it’s easy to get swallowed up in it.  Aren’t you tired of the rigmarole? ‘Date of birth?  First line of address?  Down the corridor, second door…’.  It can quickly turn you from an independent functioning adult with a family and a job, all sorts of hopes and fears and ambitions, into one of the ‘unwell’.  One of the endless ‘outpatients’ lost in the organisation.  Just another person in the queue, waiting to have something done to them.

“Inside I was the same as I’d always been and I resented being thought of as someone reduced to a symptom.”

Words matter.  I listed all the synonyms I could think of for ill: sick, impaired, invalid, infirm, diseased, incurable… it was a long list.  But thing is, I didn’t feel that any of the words really described me.  Inside I was the same as I’d always been and I resented being thought of as someone reduced to a symptom.

Like me, you must have felt at times that you’ve lost control, tangled up in this bureaucratic and bewildering thing called the NHS.  It’s a wonderful invention.  It means well.  It wants to make you better.  But sometimes you feel you’re being held hostage by it.  That you’re trapped and out of control, faced with decisions you’re not qualified to make, frightened, baffled by strange procedures, magic words, adrift in a world where you’re just another victim of an immense apparatus that no one fully understands.

“Only yesterday I was in a hospital wishing I had a Sat Nav to help me navigate the endless corridors, departments, offices and waiting rooms.”

Only yesterday I was in a hospital wishing I had a Sat Nav to help me navigate the endless corridors, departments, offices and waiting rooms.  Not for the first time, I was lost.  But you are what this institution is all about.  You are what this system is for.  You are why all these people are running about with bits of equipment, files and serious faces.  And you have some power.

“…stay interested and involved in what’s happening to you.  Don’t just lie back and take it.”

Always ask questions.  Always keep a notebook.  Have a friend with you.  Find out why and what is going on.  In short, stay interested and involved in what’s happening to you.  Don’t just lie back and take it.  Hang onto a measure of control for as long as you can because the system that is there to make you better can also, unintentionally, make you worse.