The crime of contagion

It is tempting to apply a policy of coercion for those who won't co-operate with TB treatment

WHEN YOU meet Paul Mayho for the first time, you wonder whether you are really in his home or in a hospital ward. I have just stepped off the street from the blaze of colour that is London's Chinatown. Yet this haven is devoted to an antiseptic life. The walls are a clinical white. There are no curtains, no carpets, just well-polished, fake wooden floors. The central light, modelled on a Sputnik spacecraft, would look well in an operating theatre. There are no books, just piles of file boxes that could contain patients' notes.

And then there is the individual himself, swallowed up in this whiteness. Just 28, Paul looks drawn and tired. You can almost hear Keats's own angry line against the ravages of tuberculosis: "Youth grows pale and spectre thin, and dies."

But, of course, Paul Mayho did not die. He was lucky. He caught a particularly nasty strain of TB, resistant to all but the most toxic drugs. Of seven others infected in 1995 at London's Chelsea and Westminster Hospital, six are dead. How did Paul survive? Because he is a feisty, bolshie soul. But also because he spent months in isolation receiving constant treatment. It has led to an extraordinary new book, the Tuberculosis Survival Handbook, detailing a descent into despair after one doctor warned him that he might never leave his hospital room alive.

You may think that this book describes an experience no more applicable to others than was the ordeal of the Beirut hostages. You would be wrong. Tuberculosis, which John Bunyan called "captain of all men of death", is back in a big way. And public health directors, worried about its spreading - particularly in a drug-resistant, killer form - want tough new laws, raising important civil rights issues. The days are coming when even non- infectious TB patients could be locked up if they do not take their medicine. Many more people can expect experiences similar to Paul's.

So tot up carefully the cost of that experience. For a start, Paul lost his partner. Both are HIV positive. When Paul was released from hospital, he was told that he should not live with anyone who was immune-suppressed, for fear that they would be vulnerable to infection.

"I said: `I can't live with you any more,'" Paul recalls. "The relationship had become impractical. He had visited me every day in hospital and wanted us to stay together. But I couldn't have that on my conscience. He is my best friend. We are still in contact. But we could not carry on the way we were."

Paul's diary describes a surreal world in which he survived the loneliness of TB on Temazepam, Valium and 80 cigarettes a day.

"I never saw the doctors properly. For months I was looked after by these Donald Duck-like characters, wearing orange masks. Mentally I sketched their faces, but I could see only their eyes."

His symptoms included depression, anxiety and possible psychosis - those were just the side-effects of cycloserine, an anti-TB drug. The disease itself involves emaciation, a persistent hacking cough, a racing pulse and night sweats.

"My concentration got so small. Someone bought me a PlayStation, but I could not use it. There was too much happening on the screen. It bamboozled me. Even watching television, I lost the thread. It was as though a part of me was going insane, while the other part was rational. I knew I was going a bit strange when I asked someone if I had died. I couldn't remember how I had died, but I seemed to be in a a limbo, neither here nor there."

There were the outbursts of anger at the humiliation of living in a room that he could not leave, but which offered no privacy. He describes being given a yellow bucket of strange solution in which to place his crockery. Then a nurse begins to wash the walls of his room with a solution bearing a skull and crossbones, and a warning that plenty of ventilation is needed.

"I walk around like an animal being gassed," he writes, "trying to find a pocket of breathable air. There isn't one... My eyes start to itch, and my skin and throat burn. The doctor comes in to see me... Who authorised this? Was it really necessary? He cannot or will not answer my questions. The barrage ends with me being downright rude: `My friend, you are an arsehole, get out.'"

Today Paul is cured, and has his own business. It is more than three years since he left hospital. But he is still traumatised. I think I'll catch my death in his flat. It's so cold. The window is wide open and the heating is off on one of the coldest days of the year.

"I love the feeling of air moving about," he says. "You have to remember, my window was nailed down and there were bars across it. I'm very alert to TB. I can recognise the cough. It has a rattle. Sometimes I'm down Brick Lane, which has a high incidence of TB, and I see people coming out of the mosque, heaving their guts out. I am very conscious of my air space. I can't stand planes, because they re-circulate stale air. There is always the fear of becoming ill again. Last year, I got a cold. Everyone around me had colds. But I thought: `Oh my God, the disease has come back.'"

Paul is not alone in looking out for TB. The NHS is worried. Dr Liam Donaldson, the new Chief Medical Officer, is conducting a review of infectious disease control. Most directors of public health expect him to seek changes in the law so that non-compliant TB patients - even those who are not infectious - can be confined as a last resort.

It is a policy change that fits the zeitgeist. Last week, for example, Jack Straw announced plans permitting the detention of people with personality disorders, even if they have not been convicted of a violent offence. The Government is worried about "walking time-bombs". The same concern is increasingly attached to people with non-infectious TB who are not pursuing treatment. They could easily become infectious and pose a general risk. Perhaps worse, their half-hearted use of drugs threatens to create the conditions in which more drug-resistant strains of TB can develop. Better to lock them up.

In New York, the civil liberties debate on this issue is closed. In the early Nineties, the city faced an explosion in TB cases combined with a dilapidated public health infrastructure. They reformed the type of liberal laws that we still have here in Britain. As a result, more than 200 non-infectious individuals have been detained, some for more than two years.

So what should we do? A policy of coercion is tempting, especially for the poor, the chaotic and the - arguably - mentally ill who will not co-operate with TB treatments that can be complicated and unpleasant and last for a couple of years. Such an option probably needs to be held in reserve for the most recalcitrant cases.

But, as Dr Richard Coker, a TB specialist at St Mary's hospital, London, says: "It is all very well using sticks to control TB, but you need carrots as well. My concern is that there are few carrots to support people in TB treatment."

By "carrots" he means the combination of food, money and accommodation that has been made available to people undergoing TB treatment in New York. In comparison, our own system is disordered, fragmented and underfunded. Indeed, it is fair to say that it is often the system, not the patient, which is failing to comply with what is needed to beat this illness. We should fix the system, before thinking of locking up many more people.

`The Tuberculosis Survival Handbook' by Paul Mayho is published by XLRB Graphics, Truman Brewery, Brick Lane, London E1 6QN, price pounds 5.99. `From Chaos to Coercion, Detention and The Control of Tuberculosis' by Richard Coker will be published in the autumn by St Martin's Press

Suggested Topics
Arts & Entertainment
Who laughs lass: Jenny Collier on stage
ComedyCollier was once told there were "too many women" on bill
Arts & Entertainment

Arts & Entertainment
Don (John Hamm) and Megan (Jessica Paré) Draper are going their separate ways in the final series of ‘Mad Men’
tvReview: The suits are still sharp, but Don Draper has lost his edge
Arts & Entertainment
James Franco and Chris O'Dowd in Of Mice and Men on Broadway

Review: Of Mice and Men

Arts & Entertainment

By opportunistic local hoping to exhibit the work

Arts & Entertainment
Leonardo DiCaprio will star in an adaptation of Michael Punke's thriller 'The Revenant'

Fans will be hoping the role finally wins him an Oscar

Have you tried new the Independent Digital Edition iPad app?
Arts & Entertainment
Cody and Paul Walker pictured in 2003.

Arts & Entertainment
Down to earth: Fern Britton presents 'The Big Allotment Challenge'

Arts & Entertainment
The London Mozart Players is the longest-running chamber orchestra in the UK
musicThreatened orchestra plays on, managed by its own members
Arts & Entertainment
Seeing red: James Dean with Sal Mineo in 'Rebel without a Cause'

Arts & Entertainment
Arts & Entertainment
Heads up: Andy Scott's The Kelpies in Falkirk

What do gigantic horse heads tell us about Falkirk?

Arts & Entertainment
artGraffiti legend posts picture of work – but no one knows where it is
Arts & Entertainment
A close-up of Tom of Finland's new Finnish stamp

Finnish Postal Service praises the 'self irony and humour' of the drawings

Arts & Entertainment
Pierce Brosnan as James Bond in 2002's Die Another Day

The actor has confessed to his own insecurities

Life & Style
Green fingers: a plot in East London

Allotments are the focus of a new reality show

Arts & Entertainment
Myleene Klass attends the Olivier awards 2014

Oliviers 2014Theatre stars arrive at Britain's most prestigious theatre awards
Arts & Entertainment
Stars of The Book of Mormon by Trey Parker and Matt Stone of South Park

Oliviers 2014Blockbuster picked up Best Musical and Best Actor in a Musical
Arts & Entertainment
Lesley Manville with her Olivier for Best Actress for her role in 'Ghosts'

Oliviers 2014Actress thanked director Richard Eyre for a stunning production
Arts & Entertainment
Rory Kinnear in his Olivier-winning role as Iago in Othello

Oliviers 2014Actor beat Jude Law and Tom Hiddleston to take the award
Arts & Entertainment
Benedict Cumberbatch is best known for this roles in Sherlock and Star Trek

Arts & Entertainment
theatreAll hail the temporary venue that has shaken things up at the National Theatre
Arts & Entertainment
musicShe is candid, comic and coming our way
Arts & Entertainment
booksHer new novel is about people seeking where they belong
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Have you tried new the Independent Digital Edition iPad app?

ES Rentals

    Independent Dating

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    How I brokered a peace deal with Robert Mugabe: Roy Agyemang reveals the delicate diplomacy needed to get Zimbabwe’s President to sit down with the BBC

    How I brokered a peace deal with Robert Mugabe

    Roy Agyemang reveals the delicate diplomacy needed to get Zimbabwe’s President to sit down with the BBC
    Video of British Muslims dancing to Pharrell Williams's hit Happy attacked as 'sinful'

    British Muslims's Happy video attacked as 'sinful'

    The four-minute clip by Honesty Policy has had more than 300,000 hits on YouTube
    Church of England-raised Michael Williams describes the unexpected joys in learning about his family's Jewish faith

    Michael Williams: Do as I do, not as I pray

    Church of England-raised Williams describes the unexpected joys in learning about his family's Jewish faith
    A History of the First World War in 100 moments: A visit to the Front Line by the Prime Minister's wife

    A History of the First World War in 100 moments

    A visit to the Front Line by the Prime Minister's wife
    Comedian Jenny Collier: 'Sexism I experienced on stand-up circuit should be extinct'

    Jenny Collier: 'Sexism on stand-up circuit should be extinct'

    The comedian's appearance at a show on the eve of International Women's Day was cancelled because they had "too many women" on the bill
    Cannes Film Festival: Ken Loach and Mike Leigh to fight it out for the Palme d'Or

    Cannes Film Festival

    Ken Loach and Mike Leigh to fight it out for the Palme d'Or
    The concept album makes surprise top ten return with neolithic opus from Jethro Tull's Ian Anderson

    The concept album makes surprise top ten return

    Neolithic opus from Jethro Tull's Ian Anderson is unexpected success
    Lichen is the surprise new ingredient on fine-dining menus, thanks to our love of Scandinavian and Indian cuisines

    Lichen is surprise new ingredient on fine-dining menus

    Emily Jupp discovers how it can give a unique, smoky flavour to our cooking
    10 best baking books

    10 best baking books

    Planning a spot of baking this bank holiday weekend? From old favourites to new releases, here’s ten cookbooks for you
    Jury still out on Manchester City boss Manuel Pellegrini

    Jury still out on Pellegrini

    Draw with Sunderland raises questions over Manchester City manager's ability to motivate and unify his players
    Ben Stokes: 'Punching lockers isn't way forward'

    Ben Stokes: 'Punching lockers isn't way forward'

    The all-rounder has been hailed as future star after Ashes debut but incident in Caribbean added to doubts about discipline. Jon Culley meets a man looking to control his emotions
    Mark Johnston: First £1 million jackpot spurs him on

    Mark Johnston: First £1 million jackpot spurs him on

    The most prize money ever at an All-Weather race day is up for grabs at Lingfield on Friday, and the record-breaking trainer tells Jon Freeman how times have changed
    Ricky Gervais: 'People are waiting for me to fail. If you think it's awful, then just don't watch it'

    Ricky Gervais: 'People are waiting for me to fail'

    As the second series of his divisive sitcom 'Derek' hits screens, the comedian tells James Rampton why he'll never bow to the critics who habitually circle his work
    Mad Men series 7, TV review: The suits are still sharp, but Don Draper has lost his edge

    Mad Men returns for a final fling

    The suits are still sharp, but Don Draper has lost his edge
    Google finds a lift into space will never get off the ground as there is no material strong enough for a cable from Earth into orbit

    Google finds a lift into space will never get off the ground

    Technology giant’s scientists say there is no material strong enough for a cable from Earth into orbit