Tafida Raqeeb: Why her parents do not have the final say

Tafida RaqeebImage copyright Family Handout

The parents of five-year-old Tafida Raqeeb, who is on life support, are going to the High Court to challenge an NHS decision which is preventing them from taking her abroad. Do doctors or parents get to decide what happens to sick children?

What’s happened in Tafida’s case?

Tafida Raqeeb suffered a traumatic brain injury in February as a result of a rare condition, arteriovenous malformation, where a tangle of blood vessels causes blood to bypass the brain tissue.

Tafida’s mother, Shelina Begum, and her father, Mohammed Raqeeb, want to seek treatment in Italy. But the Royal London Hospital, which is caring for their daughter, says releasing her is not in her best interests.

A spokesperson for Barts Health NHS Trust, which runs the hospital, said that its clinicians and independent medical experts had found “further medical treatment would not improve her condition”.

Can hospitals overrule parents?

In England and Wales the concept of parental responsibility is set out in law, in the Children Act 1989. This gives parents the responsibility broadly to decide what happens to their child, including the right to consent to medical treatment.

But this right is not absolute.

If a public body considers that a parent’s choices are not in the best interests of their child, and an agreement cannot be reached, it can challenge these choices by going to court.

It comes down to a judge to make the final decision, based on the evidence available.

The law does not consider either doctors or parents to be automatically right – instead, it says that the best interests of the child are the deciding factor.

A judge will hear evidence about Tafida’s clinical condition, the impact of moving her and the possibility of further treatment having any success, in order to decide the best course of action.

In the meantime, the hospital cannot withdraw life support without the parents’ consent, until a court rules it lawful.

Has this happened before?

Image copyright Getty Images
Image caption Campaigners outside the courts supporting Charlie Gard’s parents

Two recent high-profile cases – of babies Charlie Gard and Alfie Evans – also tested the limits of parents’ rights to decide what happens to their sick children.

Charlie was born on 4 August 2016 with an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) which left him with severe brain damage, partial paralysis and unable to breathe unaided.

His parents wanted to take him to the US for experimental treatment, but the hospital treating him felt his life support should be switched off and he should be allowed to die with dignity.

Charlie’s case eventually reached the highest UK court, the Supreme Court, which ruled that it was likely that Charlie would “suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement”.

His parents applied to appeal this decision in the European Court of Human Rights – which is not part of the EU. The European court said it would defer to the decision of the UK court, and ruled the appeal inadmissible.

Charlie died days later.

In the case of Alfie, there was no suggestion of new treatment – his parents wanted to transfer him to a hospital in Italy in order to prolong his life on ventilation.

He had a degenerative neurological condition and had been in a semi-vegetative state for most of his life.

Image copyright Getty Images
Image caption Posters for the campaign to keep Alfie Evans on life support

Alfie died at the age of 23 months after a judge ruled that doctors could stop providing life support, against his parents’ wishes,

In Tafida’s case, the lawyer representing her family, Yogi Amin, says there is “no evidence” she would suffer pain or harm from being moved.

But the NHS trust has said further treatment would be “invasive” and “futile”.

Could things change?

At the moment, medical teams can lawfully refuse treatment if they can prove it is not in a child’s best interests.

Charlie’s parents are campaigning for a change in the law which they have dubbed Charlie’s Law. They want doctors to have to prove a child would be at risk of “significant harm” as a result of the treatment.

This test is already used in other areas of child law, for example if a local authority applies to the courts to remove an at-risk child from its parents.

Charlie’s mother, Connie Yates, says she also wants mediation to be provided to help doctors and parents come to a decision together without going to court.

What’s next?

Two cases regarding Tafida’s care will be heard on 9 September during one sitting.

The first is a judicial review of the hospital’s refusal to release Tafida, brought by her family.

The second is being brought by the NHS trust, asking the High Court to rule on what the most appropriate care would be.

The trust recommends the withdrawal of life-sustaining treatment and the provision of palliative care.

If the family loses their case, they will be able to appeal to the Court of Appeal and eventually the Supreme Court.

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