There’s a case for giving the parents of sick children greater say in conflicts with the NHS

Consciously or not, does the medical profession perhaps take a different attitude to parents whose beliefs might lie outside the mainstream?

On life support: Tafida Raqeeb collapsed at her home in east London in February after blood vessels in her brain ruptured (PA)

It may be both a blessing and a curse for the family of five-year-old Tafida Raqeeb that the UK public and media currently have other things on their minds.

On the one hand, her relatives are benefiting from a degree of privacy they might otherwise not have had as proceedings started in the High Court this week. On the other, it has meant that the case – and the smiling face – of Tafida are not featuring as prominently as they might in the public discussion. And that is, to my mind at least, to be regretted.

Tafida is the latest small child whose fate rests with the UK courts, having become the subject of a high-stakes legal tussle between parents and doctors. The small girl collapsed in February after complaining of a headache. Doctors found that blood vessels in her brain had ruptured, and there was nothing that could be done. Barts Health NHS Trust, which is responsible for the Royal London Hospital where she is being treated, wants to stop life support, arguing that this is in the child’s best interests.

Her parents, Shelina Begum, and her father, Mohammed Raqeeb, are at odds with the medics on two counts. Tafida’s mother insists that Tafida is aware; she can track visitors around her room, open her eyes and move her limbs. In other words, she retains hope, whereas her London doctors insist there is none.

Second, there is disagreement about what should happen next. Her parents want to move her to Italy. They say that a children’s hospital in Genoa has agreed to treat her and will continue life-support until doctors there establish that Tafida is brain dead.

The barrister for the trust, Katie Gollop QC, presented the conflict as one between the parents, who wanted the right to go to a country where they were the “sole decision-makers”, and the doctors, who believed that this was not in the child’s “medical best interests”. Not necessarily, note, her best interests in any broader sense, but her “medical” best interests.

At which point, you will realise we have been around these tracks several times before.

The last time such a dilemma hit the headlines was two years ago when Charlie Gard’s winsome face beamed out from practically every front page. He had been born with a rare genetic condition which entailed severe brain damage, partial paralysis and an incapacity to breathe unaided.

Again, the conflict was between his parents, who wanted to take him for what they saw as last-resort treatment in the US, and UK medics, who said there was no hope and he should be allowed to die with dignity. The case ended up in the European Court of Human Rights, which upheld the ruling of the UK Supreme Court, that life support should be halted. His parents were, though, allowed to take him home for his final few days.

There was also the case of Alfie Evans, who suffered from a degenerative neurological condition and had spent most of his short life in a semi-vegetative state. His parents – like Tafida’s – disagreed with the UK doctors’ decision to switch off his life support and wanted to transfer him to Italy, where they believed he would be kept alive for longer, and they would have a greater say.

I would also add the case of Ashya King, the 12-year-old boy who was taken by his parents from a Southampton hospital, where he had been treated for what doctors diagnosed as a terminal brain tumour. They were pursued across Europe by UK police, but eventually took him to Prague for the proton beam therapy they had wanted all along. The last news on Ashya was that he had recovered well and was back at school.

Now it is true that in some respects all these cases are different. Neither Charlie Gard nor Alfie Evans ever had anything that might be described as a normal life. Tafida and Ashya did – which may partly explain why their parents were reluctant to accept medical advice to the effect that there was, essentially, no hope.

But they also have many aspects in common: the quest for different treatment, or treatment at all, abroad, and the view of the parents that they, rather than medics or lawyers, should have the last word on what happens to their children.

It is a view, I would suggest, that many, maybe most, parents would sympathise with, if not totally concur with. And it is one reason why I continue to find these cases so troubling.

As seen by the doctors and the courts, it is the welfare of the child – the child’s best interests – that must be protected, as per England’s 1989 Children Act (updated in 2004). This law was seen then, and still is, as a landmark piece of legislation, enshrining the principle that the child’s welfare is always, and in all circumstances, paramount.

To this end, it requires that in any litigation a child must have his or her own representation, who is separate from parents or guardian and argues in the interests of the child alone.

Which is all well and good. Where a child has been harmed, or is judged to be at risk of harm, that principle deserves to be unimpeachable. But are these children – whose fate has reached some of the highest courts of the land – really in this sort of danger?

I can understand that removing a child from the medical support they are being given at a UK hospital will entail risks, could even prove fatal, but if the parent recognises this, and nonetheless sees treatment elsewhere as a choice they have considered and want to pursue – and are prepared to pay for – why should UK medics try so hard to stop them?

In none of these cases, that I am aware of, has any parent demanded that the NHS fund the travel or treatment they wanted. Many of them undertook exhaustive research, and often fundraising, before deciding. If other countries, such as Italy, have a different cut-off point for life-support, and the parents find this preferable for religious reasons or any other, why should a UK parent not transfer a child there, if the Italian hospital is prepared to admit them? I find the Ashya King case particularly concerning.

His parents felt that his doctors did not want to accept that treatment unavailable in the UK might be more suitable for their child – even as it later transpired, a very small selection of children were already being sent to the US for proton beam treatment at NHS expense, and that the NHS was in the early stages of investing in facilities to provide the same treatment itself.

What is more, it appears to have left Ashya no worse off: in other words, his parents have been proved right.

With Tafida Raqeeb, the medical prognosis presented to the court this week is dire. Lawyers for the hospital trust said that keeping her alive artificially would mean she could suffer seizures, hip dislocation and curvature of the spine. This is part of their argument for ending her life support now – those “medical best interests” they talked about. Cutting off her life at this point, though, with this justification, seems quite at odds with the refusal of parliament and the courts to countenance assisted suicide, let alone euthanasia.

There is another point, too, which might seem peripheral but needs to be raised. Ashya King’s family were Jehovah’s Witnesses; Charlie Gard’s parents were reportedly advised by people sympathic to the US pro-Life movement; Tafida’s parents are Muslims and insisted on having a Muslim “advocate” to represent their child.

Consciously or not, does the medical profession perhaps take a different attitude to parents whose beliefs might lie outside the mainstream? Or do some of these parents perhaps place less trust in UK medics?

Whatever the ruling by the high court, Tafida Raqeeb’s case is another that could well make its way to the UK Supreme Court and the European Court of Human Rights. And once again, no doubt, any rights of the parents will come a poor second to the perceived rights of the child.

It seems to me, though, that the legal interpretation of a child’s rights may have become too narrow, and it is time to accept that the parents of a young and very sick child are also entitled to a view as to their child’s best interests.