This one's personal

Brian Belle-Fortune, Student Practice Facilitator
Great Ormond Street Hospital for Children NHS Trust, London

Way Ahead 2009;13(4):8-9

Brian Belle-Fortune was working as an Intensive Care Unit nurse in the NHS when he received a diagnosis of MS. In this intensely personal account, he describes how he traversed the boundaries between patient and health professional to decipher the meaning of his diagnosis through a strangely surreal dual perspective.

I sit waiting in the corridor of the North Middlesex Hospital. There are patients and relatives queuing and hassling a secretary on the phone saying "Not 'til April. I'm afraid it's the waiting list". A nurse commanding a sheaf of papers directs 'clients' into a room across the hall. It's a crisp sunny Monday morning, three shopping days before Christmas and there's all the shopping to sort out. I haven't sent a single card and I'm wondering why I even need to be here; why qualified nurses are used to run clinics in Blair's NHS; thinking about my parents moving house for the first time in twenty years; my brother's heart transplant; where all my friends will be at New Year; all the other things I've got to do; and - how long has the neurologist been calling my name?

I waltz into his office, the sound of traffic on the North Circular in the near distance, and sit listening distractedly with thoughts of 'hurry up man, I've got things to do.' But I'd like to have seen my face when he said:

"The results of your MRI scan show significant nerve damage indicative of MS."

Not that my jaw dropped or anything. It's nursing you see - you've heard doctors break bad news to relatives and you've done it yourself. I didn't feel the urge to jump across the desk and strangle the consultant with his tie, though he evidently had never enrolled upon the 'breaking bad news' course. I didn't feel the need to slump in my chair and cry "Why me?" as many people and their relatives do. I didn't need second hand empathy.

All those clichés we use turn out to be true. "You're in shock", we say that all the time. Shock means acting in a cloud. At one end, life is paralysed in pain and grief. At the other, you move robotically, functioning so other people don't know. "Hello, how are you?" people ask. "Oh fine thanks" you reply to every friend and stranger. And every time it's a lie. What you're really thinking is, 'well actually, I've just been told I've got this incurable disease but apart from that, mustn't grumble.'

Hanging on in quiet desperation is the English way, Pink Floyd once observed. And that's what we do. After a few quiet tears in the car park, I start thinking about who to call. Who do you call first? My soul-mate in her busy office stops to be devastated. I tell my senior nurse at work and we reassure each other that it's alright for her to say that she doesn't know what to say. Life goes on. The clocks don't stop and people are still laughing that drunken pre-Christmas laugh on the underground. Life goes on as I go to work; the third night in a run of five. Strangely enough I end up looking after Brian, a man with Guillain-Barré Syndrome. It's strange because Guillain-Barré Syndrome was one of the things I'd wondered about this time last year when I couldn't walk. Brian was a model patient. Frustrated but patient. Him ventilated in bed, and me, a patient still walking. You never know what life will throw at you. On my fourth night I end up in a double side room with Ruth, a newish D grade, and came to feel the value of drops of love in life which float you through. To Ruth I said, "By the way I've got this MS thing (I always talk about the 'thing') say what you want to say now." She did and in two minutes we carried on gossiping and being late with the observations, as you are. It was such a wonderful night. And I wasn't alone.

My last night wasn't so good. You see there's Brian with his Guillain-Barré Syndrome. Brian the MS ITU nurse - I'm not yet Brian the nurse who happens to have MS. Me and this 19 year old I'm looking after who lays so fragile in bed but he's much too well for ITU. His family arrive to spoon feed him; and I give the whole lot of them a lecture about taking responsibility for himself - like me. A tad projectionist. But when I confess to the nurse in charge, being understanding and supportive, she admits I'd only said what the rest of the staff thought anyway. One day that I survived.

Next morning in my GP's surgery he exclaims, "What!? you went back to work!? No you're not" - he tailed off, punctuating the sentence with rapid biro scribble. A month sick-leave he prescribed. Me, I needed time to get my head around the whole thing. I needed time for myself. Why do we find it difficult, even selfish to think of ourselves?

So I go into work one more time on Christmas Eve - when I'm not supposed to. And sit in report not quite concentrating on pressures, inotropes and sickness. But thinking of my pressures, my support, my sickness. Support comes in chance contacts. The odd telephone calls drip through. Jane a friend who a few days before didn't know what to say had reached an 'attitude'. "I've been thinking Brian, we ain't gonna 'ave it are we!?" At that moment, on that day I shouted with her. "I'm a fighter who's not 'gonna 'ave it."

In the weeks ahead there would be desperate mood swings, loss of appetite, loneliness and a need to seek healing.

But there's also part of me, that 'nursey' part of me, that was looking at my notes and scans with detached fascination. It was like I was taking part in my own ward round.

So watch this (bed) space, because today was a good day.

That was ten years ago...

Life as I knew it could have stopped. I've nursed people who tried to take their lives on hearing devastating news. I considered it. I wouldn't be the first ITU nurse to think about filching a lethal cocktail of drugs from the pharmacy. There was that day when I walked into the path of a thundering articulated lorry. The driver wasn't on his mobile; he was paying attention and did swerve around me, playing humiliating blasts on his foghorn.

There were adjustments to be made when I returned to work. I reduced my shifts by two a month. Depending on if it was a 'good energy day' or 'bad leg day' I could still care for very sick patients. And with some early 'MS perks' I was taken off nights - permanently. I really wanted to continue nursing critically ill patients but just looking at them became exhausting.

Great Ormond Street Hospital was recruiting. It was time for me to move sideways. Walking into main reception on the way to the interview, I thought, 'I'm staying here for a long time.' The hospital has supported me through so many twists and turns. They arranged my rota to give me enough rest between shifts and after a long period of sickness they encouraged a graduated return to work process. They've done it all with compassion.

I won't pretend that every step has been unproblematic. I have encountered a few nurses whose actions betrayed their prejudices. Over time I've learnt that a tactical withdrawal can be more effective.

Over the next nine years I staffed on the cardiac intensive care unit and on neonatal I nursed babies weighing less than half a bag of sugar. Now I'm part of a team of student practice facilitators supporting student nurses through their training. In my time at Great Ormond Street Hospital, I have qualified as a children's nurse and completed numerous courses. Outside nursing, my book has been updated and re-published, I've written over 50 articles for the Nursing Times, gained a diving licence, got married, had our little boy Zyon and joined Festival Medical Services to care for Glastonbury's hordes. I spin tunes as DJ Zyon. In the future I'd like to do a parachute drop and finish my next book.

People comment on my positive attitude. Being negative is just not me.

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