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Health: An unexpected fit: my nightmare begins: Walking in the Dales, Lotte Hughes keeled over, biting her tongue. She kept a diary of what happened next . . .

Lotte Hughes
Monday 20 June 1994 23:02 BST
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Out of the blue I had an epileptic fit. That was shock enough. More shocking for me, a stranger to hospitals, was the sense of powerlessness and fear that swamped me as I tried to get a hearing. To keep myself sane I kept a diary of events . . .

I feel peculiar while striding up Swaledale and keel over on a bank, biting my tongue. Next thing I know, I am in an ambulance slicing through the sunlight to hospital in Darlington.

'There's a very fine line between normality and epilepsy,' says the consultant, helpfully. Unhelpfully, he fails to tell me what that is, exactly. I am kept in overnight for observation.

About one person in 20 will have an epileptic fit once in their lives; one in 200 will be diagnosed as epileptic. Sixteen years ago, when I was 24, I blacked out. I spent a night in hospital, and left with the diagnosis: 'query epilepsy'. But I felt perfectly well, was given no advice and no medication, and I had not since given it a second thought.

This ward is a sort of medical Butlins, and joining in is mandatory, whether you feel like death or not. Edna crows: 'It's introduction time]' her face lurching round my bedside curtain. I just want to hide, and sleep. I am dazed, and amazed by the lack of information. My foot isn't falling off (like Edna's), nor is my brain in need of a transplant (yet). It seems the doctors don't know what to do with me. I don't look ill. They don't want a mere weekend tourist in a bed. Pack her off home and let her GP take the strain.

Next morning, I am discharged into the ether without being given a clinical diagnosis or anything more rigorous than reflex and blood tests. 'Here's a little something for your doctor,' said the junior doc, apologetically. 'It's not much.'

I'm still too out-of-it to argue. I head for the train clutching my little brown envelope. Why can't they share its contents with me?

Back in London, the GP commiserates and says he'll try to get me 'seen' by a consultant. He holds out little hope for an early appointment: 'I apologise in advance for the state of the NHS - it could take months. Unless you have a heart attack in front of me, I can't get you an immediate referral,' he says.

So what are you supposed to do - put your whole life on hold? A week goes by and I feel progressively spaced-out and panicky. I can't walk down the street, let alone go to work. The GP suggests that I present myself at casualty. 'Work it up a bit] Lay it on thick]' urged friends, and they were right. How else do you get taken seriously, if you look absolutely fine?

So I arrive at casualty. Immediately I have this feeling that it is a game, and I haven't got the rule book. This is Doctors and Nurses for real.

First, I must get past the receptionist, then the young nurse loudly taking patients' details behind a half-curtain. But my speech sounds slurred and hesitant, my memory is slipping; the sick are in the worst condition to articulate their needs and present their credentials for treatment. In my head, I plan the fall- back - throwing a public 'fit' should I be turned away. Steady on, old bean]

So far, I've been treated either as a psychiatric case or a total hypochondriac. Now I'm up and running - eager whitecoats clasp and unclasp their hands and talk of lumbar punctures, brain scans and observation. This is a teaching hospital.

If given a choice of lying down or sitting in casualty, take it lying down. It looks much better, and it's then an easier move from trolley to bed to ward. And if tempted to crack a sick joke with doctor (there are plenty teetering on the edge of the tongue), don't. Not yet. You lose your sick cred.

They decide to admit me. It's taken four hours. The stress level is soaring. The young woman opposite screams in an endless pattern of three staccato bursts: 'Aa] AAH] AAH] Oh God.' She has advanced multiple sclerosis and schizophrenia, says the nurse.

The screaming we can take, after a while. What's worse is the lumpen one in the next bed who, through the night, shouts at the screamer to shut up. The MS patient, Annette, who is French, finds her English in magnificent style: 'Fuck off]'

Still no one can tell me anything. It feels as if I am imprisoned in a glass bubble, mouthing my needs. If I am heard at all, it seems easy for them to ignore me. A succession of doctors and nurses ask ectoplasmic streams of questions, expecting me to remember their names and what they said yesterday.

The sweet silage smell of Annette's double incontinence infuses the ward. It is not unlike daisies. But my skewed mind cannot grasp what is real. For me, there is a very fine line between pong and perfume.

I am still confused, and my speech slow, but I am cruising with gratitude in 24-hour care. The first night, they check me every hour. I do not complain. I get a brain scan - just what I've always wanted - and all manner of tests and sensible questions, which rule out meningitis and tropical diseases (I had just returned from Mozambique).

I get a diagnosis and am reassured that this may never happen again - or if it does, it is not life-threatening. There are things I can do to prevent it. That is all I wanted to know.

There's a fine line between being taken seriously and not being seen at all, say the voices in my head (they asked if I'd heard those, too). Thank you, Royal Free, for giving me the works.

The Government plans to make it easier for 'consumers' to complain about the health service. What I want to complain about in the NHS is not the obvious - the botched operation or the misdiagnosis - but the general malaise of a system that forces the patient with something as nebulous as epilepsy to feel they must prove that they are ill.

In the end, I was fortunate. Others are not so. Maybe they simply couldn't articulate their needs . . .

British Epilepsy Association: 0532 439393.

(Photograph omitted)

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