Jaymee and final choices: The story behind the story

'I'd rather have gone through more suffering to live than not go through anything and die' - Jaymee Bowen, page 5

A year of happy, hopeful life for an 11-year-old - what is it worth? It is priceless, of course, in a realm beyond financial reckoning. To the child herself, it was all there was.

Jaymee Bowen - Child B of the celebrated "health rationing" case - died on Tuesday night, as most of the leading cancer experts knew she must.

She lived longer than many predicted but the ending was virtually certain. Her beaming face and extraordinary hopefulness were almost unbearable to watch for those who knew that hope was an illusion. But she had her extra year.

Controversy about the issues in her case will live on for as long as dying patients press for expensive, untried treatments against the rigid confines of NHS budgets. This was Jaymee's story: fighting leukaemia half of her life, at 10 years old she reached the end of the line after a bone marrow transplant failed. Her doctors said that there was no hope and further treatment might only prolong suffering.

But her father refused to accept it and demanded a second bone marrow transplant. The health authority, Cambridge and Huntingdon, refused because of the pain involved, no-one in her condition had ever survived it and the best experts at the Royal Marsden hospital gave the same second opinion. (The health authority always said they would have paid for any treatment the Marsden had recommended.) So it was not entirely a matter of the pounds 75,000 cost. But nor was money absent from their thinking.

Desperate, Jaymee's father turned to a private doctor in Harley Street, Dr Peter Gravett, who, to the extreme disapproval of most other child cancer specialists, said he would give Jaymee a second transplant. After the Court of Appeal turned down a plea to force the health authority to pay, a private benefactor stepped forward and Dr Gravett told a press conference the treatment would go ahead.

In fact, Jaymee never received the disputed second transplant. When Dr Gravett looked again at the stark facts, he retreated. Instead, he gave her more chemotherapy which put her into remission - treatment her original hospital might have offered had Jaymee's family pushed for it.

Dr Gravett then gave her an experimental treatment in early trial stages - donor lymphocyte infusion - infusing white blood cells from her sister. It had never been tried on a child and it could have stripped the skin from her whole body. Jaymee's health authority was never asked to foot the bill for this treatment.

And so she lived for another year to thumb her nose at the health authority. But since she was not part of a controlled trial, no one will ever know if her treatment gave her the extra year. It might have been just the chemotherapy, though she survived longer than most experts expected.

This, then, is not a nice neat debating society moral dilemma: should the health authority have paid pounds 75,000 to buy Jaymee a year of life? They were never offered anything that looked like that proposition. Like most health dilemmas, it is murky.

Virtually all leading child cancer experts belong to the UK Children's Cancer Study Group, pooling research on new treatments. Its chairman, Professor Clifford Bailey, says that were he faced with Jaymee's case again, he would give the same advice - not to treat her.

He says the very early stages of the trials of donor lymphocyte infusion look as if it will not be a treatment in itself, but it may enhance the chances of bone marrow transplant success in 15 per cent of patients.

Britain leads in child leukaemia treatment partly because all research is highly co-ordinated. Professor Bailey says if health authorities give in to patient pressure and fund untried, expensive treatments outside official trials, their money will be wasted and trials would be wrecked in popular stampedes with no clear outcomes.

To any parent of a dying child that is a dry and deathly answer. Of course they will clutch at any straw from apricot stones and carrots to the now discredited rush for interferon for bone cancer. The burden will always fall upon health authorities to make the final choice, but what more can they do but rely on the overwhelming medical opinion of the day?

Start your day with The Independent, sign up for daily news emails
Have you tried new the Independent Digital Edition apps?
ebookA unique anthology of reporting and analysis of a crucial period of history
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating

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

iJobs Job Widget
iJobs General

Guru Careers: Software Developer

£35 - 40k + Benefits: Guru Careers: We are seeking a Software Developer (JavaS...

SThree: Trainee Recruitment Consultant / Resourcer

£18000 - £23000 per annum + Commission: SThree: As a Trainee Recruitment Consu...

Ashdown Group: UI Developer - (UI, HTML, CSS, JavaScript, AngularJS)

£25000 - £40000 per annum: Ashdown Group: UI Developer - (UI, JavaScript, HTML...

Ashdown Group: Graduate UI Developer - HTML, CSS, Javascript

£25000 - £30000 per annum: Ashdown Group: Graduate UI Application Developer - ...

Day In a Page

Is a quiet crusade to reform executive pay bearing fruit?

Is a quiet crusade to reform executive pay bearing fruit?

Dominic Rossi of Fidelity says his pressure on business to control rewards is working. But why aren’t other fund managers helping?
The King David Hotel gives precious work to Palestinians - unless peace talks are on

King David Hotel: Palestinians not included

The King David is special to Jerusalem. Nick Kochan checked in and discovered it has some special arrangements, too
More people moving from Australia to New Zealand than in the other direction for first time in 24 years

End of the Aussie brain drain

More people moving from Australia to New Zealand than in the other direction for first time in 24 years
Meditation is touted as a cure for mental instability but can it actually be bad for you?

Can meditation be bad for you?

Researching a mass murder, Dr Miguel Farias discovered that, far from bringing inner peace, meditation can leave devotees in pieces
Eurovision 2015: Australians will be cheering on their first-ever entrant this Saturday

Australia's first-ever Eurovision entrant

Australia, a nation of kitsch-worshippers, has always loved the Eurovision Song Contest. Maggie Alderson says it'll fit in fine
Letterman's final Late Show: Laughter, but no tears, as David takes his bow after 33 years

Laughter, but no tears, as Letterman takes his bow after 33 years

Veteran talkshow host steps down to plaudits from four presidents
Ivor Novello Awards 2015: Hozier wins with anti-Catholic song 'Take Me To Church' as John Whittingdale leads praise for Black Sabbath

Hozier's 'blasphemous' song takes Novello award

Singer joins Ed Sheeran and Clean Bandit in celebration of the best in British and Irish music
Tequila gold rush: The spirit has gone from a cheap shot to a multi-billion pound product

Join the tequila gold rush

The spirit has gone from a cheap shot to a multi-billion pound product
12 best statement wallpapers

12 best statement wallpapers

Make an impact and transform a room with a conversation-starting pattern
Paul Scholes column: Does David De Gea really want to leave Manchester United to fight it out for the No 1 spot at Real Madrid?

Paul Scholes column

Does David De Gea really want to leave Manchester United to fight it out for the No 1 spot at Real Madrid?
Season's finale brings the end of an era for top coaches and players across the continent

The end of an era across the continent

It's time to say farewell to Klopp, Clement, Casillas and Xavi this weekend as they move on to pastures new, reports Pete Jenson
Bin Laden documents released: Papers reveal his obsession with attacking the US and how his failure to keep up with modern jihad led to Isis

'Focus on killing American people'

Released Bin Laden documents reveal obsession with attacking United States
Life hacks: The innovations of volunteers and medical workers are helping Medécins Sans Frontières save people around the world

Medécins Sans Frontières's life hacks

The innovations of volunteers and medical workers around the world are helping the charity save people
Ireland's same-sex marriage vote: As date looms, the Irish ask - how would God vote?

Same-sex marriage

As date looms, the Irish ask - how would God vote?
The underworld is going freelance: Why The Godfather's Mafia model is no longer viable

The Mafia is going freelance

Why the underworld model depicted in The Godfather is no longer viable