Delay in boy's treatment a tragedy, judges say: Health authorities criticised for failing to consult on closure of bone marrow unit

TWO LONDON health authorities were criticised by the High Court yesterday for breaching their statutory responsibilities in failing to enter consultation procedures over the closure of a pioneering bone marrow transplant unit.

But Lord Justice Kennedy told the parents of two-year-old Rhys Daniels, who challenged the closure after their son was denied treatment for a rare and fatal genetic disease, that he would not order the reopening of the unit or make a declaration that the authorities had acted unlawfully.

He also rejected the argument that the closure of the unit at the Westminster Children's Hospital in London on 1 April amounted to a breach of duty by Virginia Bottomley, the Secretary of State for Health.

However, Lord Justice Kennedy, sitting with Mr Justice Macpherson, admitted that uncertainty over the unit had been a 'tragedy' for Rhys as it had delayed his treatment for Batten's disease by at least eight months.

Afterwards, Rhys's father, Barry Daniels, 34, of Epping, Essex, said that the decision was a victory which would hopefully benefit children in a similar situation. It is hoped that Rhys will be given the bone marrow transplant within the next month at a Bristol hospital.

Doctors discovered that he had the disease - which leads to blindness, seizures and dementia - last year and put him at the top of the list for a transplant. Transplants are still experimental treatment for the disease, but are the only chance for Rhys who would otherwise die by the age of seven. The operation must be carried out before the victim shows symptoms, usually around the age of three.

Rhys was due for a transplant in February at the Westminster's bone marrow unit, but staff had begun to leave as they realised their future there looked doubtful, leaving too few to carry out his treatment.

The cloud over the unit's future was the result of an earlier decision to close the hospital and move the services, including bone marrow transplants, to the new Westminster and Chelsea Hospital in April.

But the viability of the unit came under scrutiny as it was not treating enough patients and the health authorities - Riverside and North West Thames - entered negotiations with Guy's hospital, the Hospital for Sick Children Great Ormond Street and Hammersmith and Fulham with a view to a merger.

However, the health authorities failed to consult Riverside Community Health Council, the body legally entrusted to oversee health-care provision, as they were statutorily obliged to do when varying services.

Lord Justice Kennedy said that even when the council got wind of what was happening and requested information it had difficulty obtaining a reply, then got a letter which was significant in 'failing to reveal the extent to which the unit had already been allowed to fade away'.

Mr Daniels said later: 'I think the judgment was excellent. The judge basically said that the closure was a shambles. He went along with us on all the points that we made.'

The judgment also said that, as the Secretary of State had suggested in evidence, the unit should be re-established in the London area, but a court order would not help in that.

Jonathan Street, for North West Thames, said the authority was still in negotiations with Great Ormond Street and Hammersmith and Fulham hospitals in the hope that the unit could be reopened.

Alan Meyer, the family's solicitor, said that the judgment was significant for the future of health-care provision as authorities would have to be more cautious when cutting services.

Law report, page 31

(Photograph omitted)

News
The Banksy image in Folkestone before it was vandalised
people
Life and Style
tech

Sales of the tablet are set to fall again, say analysts

Sport
football West Brom vs Man Utd match report: Blind grabs point, but away form a problem for Van Gaal
Arts and Entertainment
Gotham is coming to UK shores this autumn
tvGotham, episode 2, review
PROMOTED VIDEO
Have you tried new the Independent Digital Edition apps?
News
ebooksAn unforgettable anthology of contemporary reportage
News
i100
Arts and Entertainment
Bloom Time: Mira Sorvino
tvMira Sorvino on leaving movie roles for 'The Intruders'
News
First woman: Valentina Tereshkova
peopleNASA guinea pig Kate Greene thinks it might fly
News
Brian Harvey turned up at Downing Street today demanding to speak to the Prime Minister
news

Met Police confirm there was a 'minor disturbance' and that no-one was arrested

Arts and Entertainment
George Lucas poses with a group of Star Wars-inspired Disney characters at Disney's Hollywood Studios in 2010
films

George Lucas criticises the major Hollywood film studios

Voices
Chris Grayling, Justice Secretary: 'There are pressures which we are facing but there is not a crisis'
voices

Does Chris Grayling realise what a vague concept he is dealing with?

Life and Style
A street vendor in Mexico City sells Dorilocos, which are topped with carrot, jimaca, cucumber, peanuts, pork rinds, spices and hot sauce
food + drink

Trend which requires crisps, a fork and a strong stomach is sweeping Mexico's streets

Life and Style
The charity Sands reports that 11 babies are stillborn everyday in the UK
lifeEleven babies are stillborn every day in the UK, yet no one speaks about this silent tragedy
News
Blackpool is expected to become one of the first places to introduce the Government’s controversial new Public Space Protection Orders (PSPOs)
news

Parties threaten resort's image as a family destination

Life and Style
Northern soul mecca the Wigan Casino
fashionGone are the punks, casuals, new romantics, ravers, skaters, crusties. Now all kids look the same
Life and Style
gaming

I Am Bread could actually be a challenging and nuanced title

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

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

iJobs Job Widget
iJobs General

Year 5 Teacher

£80 - £140 per day: Randstad Education Leeds: Year 5 Teacher KS2 teaching job...

Software Developer

£35000 - £45000 Per Annum Pensions Scheme After 6 Months: Clearwater People So...

Systems Analyst / Business Analyst - Central London

£35000 - £37000 per annum + Benefits: Ashdown Group: Systems Analyst / Busines...

Senior Change Engineer (Network, Cisco, Juniper) £30k

£30000 - £35000 per annum + Benefits: Ampersand Consulting LLP: Senior Change ...

Day In a Page

Two super-sized ships have cruised into British waters, but how big can these behemoths get?

Super-sized ships: How big can they get?

Two of the largest vessels in the world cruised into UK waters last week
British doctors on brink of 'cure' for paralysis with spinal cord treatment

British doctors on brink of cure for paralysis

Sufferers can now be offered the possibility of cure thanks to a revolutionary implant of regenerative cells
Ranked seventh in world’s best tourist cities - not London, or Edinburgh, but Salisbury

Salisbury ranked seventh in world’s best tourist cities

The city is home to one of the four surviving copies of the Magna Carta, along with the world’s oldest mechanical clock
Let's talk about loss

We need to talk about loss

Secrecy and silence surround stillbirth
Will there be an all-female mission to Mars?

Will there be an all-female mission to Mars?

Women may be better suited to space travel than men are
Oscar Pistorius sentencing: The athlete's wealth and notoriety have provoked a long overdue debate on South African prisons

'They poured water on, then electrified me...'

If Oscar Pistorius is sent to jail, his experience will not be that of other inmates
James Wharton: The former Guard now fighting discrimination against gay soldiers

The former Guard now fighting discrimination against gay soldiers

Life after the Army has brought new battles for the LGBT activist James Wharton
Ebola in the US: Panic over the virus threatens to infect President Obama's midterms

Panic over Ebola threatens to infect the midterms

Just one person has died, yet November's elections may be affected by what Republicans call 'Obama's Katrina', says Rupert Cornwell
Premier League coaches join the RSC to swap the tricks of their trades

Darling, you were fabulous! But offside...

Premier League coaches are joining the RSC to learn acting skills, and in turn they will teach its actors to play football. Nick Clark finds out why
How to dress with authority: Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear

How to dress with authority

Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear
New book on Joy Division's Ian Curtis sheds new light on the life of the late singer

New book on Ian Curtis sheds fresh light on the life of the late singer

'Joy Division were making art... Ian was for real' says author Jon Savage
Sean Harris: A rare interview with British acting's secret weapon

Sean Harris: A rare interview with British acting's secret weapon

The Bafta-winner talks Hollywood, being branded a psycho, and how Barbra Streisand is his true inspiration
Tim Minchin, interview: The musician, comedian and world's favourite ginger is on scorching form

Tim Minchin interview

For a no-holds-barred comedian who is scathing about woolly thinking and oppressive religiosity, he is surprisingly gentle in person
Boris Johnson's boozing won't win the puritan vote

Boris's boozing won't win the puritan vote

Many of us Brits still disapprove of conspicuous consumption – it's the way we were raised, says DJ Taylor
Ash frontman Tim Wheeler reveals how he came to terms with his father's dementia

Tim Wheeler: Alzheimer's, memories and my dad

Wheeler's dad suffered from Alzheimer's for three years. When he died, there was only one way the Ash frontman knew how to respond: with a heartfelt solo album