Indi Gregory: Latest end of life care appeal turned down

Indi has mitochondrial disease which prevents cells in the body producing energy

The latest appeal by the family of a critically ill baby over managing her life support has been turned down.

Indi Gregory has mitochondrial disease and staff at Nottingham's Queen's Medical Centre (QMC) have said they can do no more for her.

Lawyers for her family challenged a ruling that her care could only be withdrawn at a hospice or hospital rather than at her Derbyshire home.

This was rejected on Friday at a Court of Appeal hearing.

Court of Appeal judge Lord Justice Peter Jackson said the appeal was "entirely without merit" and Lady Justice King and Lord Justice Moylan said they agreed.

Lord Justice Jackson also expressed "profound concern" about recent developments in the litigation.

He said doctors caring for Indi and other critically-ill children had been put in an "extremely challenging" position.

Lord Justice Jackson said "manipulative litigation tactics" designed to frustrate orders made by judges after "anxious consideration" would not be tolerated.

Indi Gregory, photographed here with mother Claire Staniforth, was born on 24 February

A judge ruled on Wednesday Indi's treatment should end in a hospice or hospital but her parents, Dean Gregory and Claire Staniforth, want it at their home in Ilkeston.

On Friday the Court of Appeal heard a request from the family for this judgement to be set aside to allow them to discuss new information on Withdrawal Abstinence Syndrome, the child's body's reaction to being taken off her long-term treatment.

Barrister Bruno Quintavalle, who represented Mr Gregory at the appeal hearing, also told Lady Justice King, Lord Justice Moylan and Lord Justice Peter Jackson that Mr Justice Peel had originally made an order saying Indi's parents could decide whether "extubation" would take place at home, in a hospital or in a hospice.

He said, in a written case outline, that Mr Justice Peel had "amended" that order.

"The effect of the amendment is to remove the parents' right to take Indi home for extubation," Mr Quintavalle told the three appeal judges.

"The option of a transfer to home for extubation had been one of the options offered to the family by the doctors, then chosen by the family."

He argued that there was an "obligation" to "provide it".

Lord Justice Jackson said on Friday, when ruling on Indi's father's appeal, that the eight-month-old had been on "full life support" since early September.

The judge said evidence showed that "invasive" treatments caused her daily "significant pain and distress".

He said she showed "no purposeful interaction" with the "world around her".

"The trust, it seems to me, has had proper sympathy and understanding for the parents' position," he said.

"The judge's (Mr Justice Peel) approach has been fair and sensible, with decisions based on strong evidence."

He said there had been a number of hearings since Mr Justice Peel ruled that withdrawal of treatment was in Indi's best interests, which have required "significant preparation" and had distracted medics, he said.

Indi Gregory is being cared for at Nottingham's Queen's Medical Centre

Mitochondrial disease prevents cells in the body producing energy and the NHS says the condition is incurable.

Emma Sutton KC, for Nottingham University Hospitals Trust, said the medical team had always acted in the interest of Indi.

She added discussions had been complicated by public demonstrations, the involvement of Italian authorities in trying to transfer care to that country, the family's repeatedly stated desire for Indi to be taken home, and further delays to no prospect of reaching an agreement and "a line has to be drawn".

In October, Mr Justice Peel gave medics permission to withdraw life support, saying the medical evidence was "unanimous and clear".

Since then Indi's parents have failed to persuade Court of Appeal judges in London and judges at the European Court of Human Rights (ECHR) in Strasbourg, France, to overturn the decision.

Bambino Gesu Children's Hospital in Rome agreed to provide treatment, but on 2 November a judge denied an application to move Indi to Rome for further care, with Mr Justice Peel ruling it "would not be in Indi's best interests".

Mr Gregory said after Friday's appeal hearing, in a statement issued through Christian Concern, which is supporting the family: "Claire and I are again disgusted by another one-sided decision from the judges and the trust.

"The whole world is watching and is shocked at how we have been treated.

"Claire and I have always wanted what is in Indi's best interests.

"She has human rights and we wanted her to have the best treatment possible."

He added: "This feels like the latest kick in the teeth, and we will not give up fighting for our daughter's chance to live until the end."

Maggie Throup, MP for Erewash, which includes Ilkeston, said: "Whilst very few people could even begin to imagine the heartbreaking situation currently faced by Ms Staniforth and Mr Gregory, I have no doubt that, forced to choose, every parent would want to care for their child in the familiar surroundings of their own home rather than at a hospital or a hospice.

"At every step, Indi's parents have acted with both courage and dignity in defending their daughter's right to life, and I am clear that they should now be the ones to decide where Indi is discharged to and what actions are in her best interests."

Nottingham University Hospitals NHS Trust said: "This has been a very long and challenging journey for Indi, her parents and everyone involved.

"Our priority will remain to provide Indi specialised care appropriate to her condition and in line with the latest court judgement. Alongside this, we will continue to support her family in every way possible."

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