Medics treating critically ill babies are quitting their jobs owing to “considerable moral distress” caused by a rightwing Christian group behind a series of end-of-life court cases, the Guardian has been told.
Senior doctors claimed the behaviour of some evangelical campaigners was “prolonging the suffering” of seriously ill infants. They accused them of “selling falsehoods and lies” to families and of using legal tactics condemned by judges.
One paediatric intensive care consultant described how he was pelted with eggs and “barraged” inside a hospital during protests over the case of Alfie Evans, a toddler whose life support was removed after a high-profile court battle in 2018.
He said: “These groups are complicit in prolonging suffering and not allowing for a good death, which makes someone’s death longer and more painful than it needs to be. That’s what keeps us awake at night.”
A court of appeal judge this month expressed “profound concern” about the use of “manipulative litigation tactics” in the case of Indi Gregory, a critically-ill baby girl who died on 13 November after a legal battle over her treatment.
It was the latest in a series of high-profile end-of-life cases brought by the campaign group Christian Legal Centre (CLC), which also represented the parents of Charlie Gard, Alfie Evans and Archie Battersbee.
Andrea Williams, chief executive of the CLC, said it was “highly perverse” to accuse the company of prolonging suffering because “we do not bring the legal proceedings, they [the NHS trusts] do”.
In the Indi Gregory case, judges had ordered that the eight-month-old’s life support be turned off after doctors demonstrated that further treatment was “painful, hopeless and contrary to her best interests”.
Indi’s parents disagreed and lodged an appeal to the European court of human rights, followed by a series of unsuccessful legal challenges backed by the CLC.
The Guardian has learned that the London-based group worked with a rightwing former Italian senator, Simone Pillon, in an attempt to have Indi flown to the Vatican’s children’s hospital for treatment.
Pillon said Indi was a victim of “oppression” and was like a “like a lamb to the slaughter”.
Lord Justice Peter Jackson said he had “profound concern” that the legal manoeuvres in Indi’s case had distracted attention from the gravely ill baby.
The judge said the six court hearings in 25 days had involved “very significant preparation” by Indi’s medical team and was a “distraction of attention from Indi herself”.
It had been “extremely challenging” for clinicians, he said, who were caring for 12 other critically-ill babies at the same time.
Williams said Indi “would be alive today” in hospital in Rome “if the NHS and the courts had released her”.
She added: “Medical expert evidence had identified cardiological treatment which would have enabled her to survive off the ventilator, free from pain or distress associated with that.”
The high court judge Sir Robert Peel found that the “entirety of the medical evidence is unanimous” that Indi was “now almost certainly permanently intubated”. Her conditions were “irreversible and untreatable”, the judge said.
The CLC says it is a lifeline for families who cannot financially compete with NHS trusts.
However, there is growing concern in the judiciary and the medical profession about its influence.
Prof Neena Modi, president-elect of the European Association of Perinatal Medicine, claimed the CLC “preys on parents when they are at their most vulnerable”.
In her opinion, the company “causes harm” by seemingly damaging the trust between parents and healthcare teams, and appearing to give families “false hope” rather than helping them grieve.
She said she believed they persuaded gullible members of the public into giving donations, and prolonged “the suffering of patients whose cardinal need is to be helped to have a good death”.
One paediatric intensive care consultant, who did not want to be named, said she thought the organisation was placing “tremendous pressure” on families to feel as if “the only way they can be a good parent is to jump through all of these legal hoops, otherwise they haven’t tried their best for the child”. She added: “Whereas, doing their best for the child is limiting their suffering.”
Another children’s critical-care doctor claimed the abuse and burnout had led to a “significant bleeding” of medical specialists, adding to the strain on children’s critical care wards.
They said: “The focus is always on the child but a side-effect is the considerable moral distress of anyone working with that child because essentially we are prolonging the suffering.
“We are complicit, in a way, in it [the suffering] because we need to carry on looking after that child clinically for longer.”
The doctor, who was involved in the treatment of Alfie Evans in 2018, said the targeting of medics in that case had prompted many professionals to quit: “The number of nurses being lost in the aftermath of that was immense. There was such a big crisis in retainment. It was pretty awful.”
The consultants agreed to speak on condition of anonymity because they were not authorised by the NHS to talk publicly about these cases.
Williams said it was perverse to blame the CLC for causing distress to medical professionals.
She added: “It is right that involvement in life and death decisions may cause moral distress to the professionals, but how does this compare to the agony of families who have to go through the legal proceedings where life and death decisions are being made about their loved ones by the power of the state.”
A judge in the Indi Gregory case singled out the CLC’s legal consultant, Pavel Stroilov, for criticism, suggesting he was “out of control”. Stroilov is not a qualified solicitor.
A former adviser to the former Ukip leader Gerard Batten, Stroilov was described by a judge in the Alfie Evans case as a “fanatical and deluded young man” whose “malign hand” was “inconsistent with the real interests of the parents’ case”. Stroilov has been approached for comment.
In 2020, a judge criticised as “arguably unlawful” the actions of a woman represented by the CLC who had secretly filmed a severely disabled estranged relative in hospital so the clips, totalling under three minutes, could be used as the basis of a medical opinion by a doctor who had been procured by the campaign group.
The Christian Legal Centre, part of Christian Concern, is at the centre of a well-funded international nexus of rightwing evangelist groups who oppose LGBTQ+ rights, abortion and same-sex marriage.
Until August, families at the centre of distressing end-of-life cases were not entitled to public funding, an obstacle described as “scandalous” by a high court judge in the Indi Gregory case.
This meant that families who wished to mount a legal challenge against the decision of doctors had to fund it themselves at considerable cost – or rely on organisations such as the CLC.
The Solicitors Regulation Authority (SRA) undertook a review of the CLC after the Alfie Evans case in 2018. However, the company does not fall within the SRA’s remit because it is not a registered legal firm.
One children’s intensive care doctor said this legal grey area was allowing the campaigners to act with impunity. He added: “There should be proper regulation of anyone acting in a legal capacity representing these families.”
The Paediatric Critical Care Society, which represents medical professionals who treat the most seriously ill children, said: “While it’s crucial to respect the rights of all parties involved and ensure the child’s best interests are upheld, it’s equally important to consider the potential impacts of prolonged legal disputes on both the families and healthcare staff involved.”