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It has been a long, arduous battle which has drawn interventions from the Pope, world leaders and the highest appeal courts in the land. That the case of a seriously ill baby boy from Bootle, Merseyside, has garnered such a level of attention is unprecedented – the Polish president, a US governor, the European Parliament president, and doctors from Italy and Germany are among a perplexing range of medical experts and politicians whose support of Alfie Evans’ parents have built a global momentum around the story.
Debate has become so heated that Merseyside police have had to monitor social media, while at Alder Hey, the children’s hospital where Alfie has lain in bed, security had to be heightened after 200 protesters tried to storm the building.
At the centre of it all is a little boy of 23 months who suffers from a neurodegenerative disorder so complex that the most lauded experts in the country failed to diagnose him. A German professor who gave evidence in the High Court in February noted that if the condition is one day given a name, it should be Alfie’s disease.
In his short life, Alfie has been visited by a High Court judge and given Italian citizenship. His father Tom, a 21-year-old plasterer, has been received at the Vatican by the Pope. That the legal proceedings in Britain have taken into account arguments around whether or not letting someone die goes against the will of God tells us more than anything that this case is about points of ethics as much as it is about points of law. It boils down to one question: who should have the final say on whether to extend the life of a helpless, terminally ill baby?
The family’s battle has seen them come up against a law that gives the State the authority, over them, to make decisions about their son’s life. The law dates back to the 17th century, when a doctrine, parens patriae, was used to allow the State to intervene against parents and to act for any child in need of protection. In Alfie’s case, Alder Hey Children’s NHS Foundation Trust sought (and was granted) a declaration that ventilatory support was “not in Alfie’s best interests, and in the circumstances it is not lawful that such treatment continue”.
It conflicts with the parents’ Roman Catholic faith, which would advocate for Alfie’s life to be prolonged while he is relatively stable, as well as their own wish to be in control of their baby’s future, however long that might be.
Pope Francis recently called for a balance to be struck between medical efforts to prolong life and the decision to withhold treatment when death becomes inevitable.
“It is clear,” he wrote in an open letter to the Pontifical Academy for Life last year, “that not adopting, or else suspending, disproportionate measures, means avoiding overzealous treatment; from an ethical standpoint, it is completely different from euthanasia, which is always wrong, in that the intent of euthanasia is to end life and cause death.”
The court’s decision rests in part on the assumption that Alfie might be suffering, and that to prolong this would be cruel and unlawful. But in the February ruling, Mr Justice Hayden stated it was impossible to be certain of this. One of Alfie’s doctors told the court: “It is unlikely that Alfie feels pain or has sensation of discomfort but I cannot be completely certain.”
The hospital has argued that scans show “catastrophic degradation of his brain tissue” and that further treatment is not just “futile” but “unkind and inhumane”.
On Monday, Mr Justice Hayden ruled that his life support be switched off. On Tuesday, his parents were granted an emergency hearing when it was clear Alfie was breathing unassisted. Doctors had doubted this would even be possible. Galvanised, his parents tried again to make the point that the experts were not always right. “They say Alfie’s suffering,” Mr Evans said. “Well look at him now. He’s not even on a ventilator and he’s not suffering.” Paul Diamond, from the Christian Legal Centre representing the parents, said the court should reconsider. But it refused to lift an order preventing Alfie’s removal from Alder Hey. Mr Justice Hayden ruled: “The brain cannot regenerate itself and there is virtually nothing of his brain left.” He criticised the “malign hand” of Pavel Stroilov, one of the family’s advisers, a law student who had, the court heard, been party to Mr Evans lodging a private prosecution against Alder Hey hospital doctors. By Wednesday, Alfie was said to be “struggling”. Yesterday, his parents appealed to doctors one final time to allow them to take their son home. Yet still, faced with the painful reality that his son is slipping away from him, Alfie’s father talked calmly to reporters outside the hospital about the legal avenues he was exploring, and made a last-ditch appeal for the Pope to come to Liverpool to visit his son (a “military grade” aircraft with Italy’s top surgeons on board is said to be standing by at the order of the Pope).
So why, after all this time, will the courts not allow Mr Evans this final request? His argument is clear: if the doctors cannot be sure that Alfie is in pain, why shouldn’t they take him home, or indeed fly him to another country? Alfie’s parents have tried to find alternative treatment, instructing doctors from Bambino Gesu Hospital in Rome and from the Munich Air Ambulance and University Hospital. Every doctor involved has concluded he has suffered devastating erosion in his brain. Mr Justice Hayden said in February there was “no diagnosis and there may never be”. All agreed the condition was “catastrophic and untreatable”.
But it is not curative treatment Alfie’s parents are seeking – what Italian and German medics have offered them is the chance to keep him alive, and to continue tests. Professor Nikolaus Haas at University Hospital Ludwig-maximilians, Munich, told the High Court: “It is clear for me that Alfie can be transported safely around the world without any major risks.” Prof Haas proposed an MRI and a tracheostomy, and possibly genetic testing to better understand Alfie’s condition, and then teach Alfie’s parents to use a home ventilation system all for the cost of €65,000 (which would not have to be paid by the NHS). Italy, meanwhile, is also offering basic hydration and a tracheostomy as well as the chance to try to buy time to identify his illness. Dr Mariella Enoc, president of the Vatican’s Bambino Gesu paediatric hospital, said all costs would be covered. The Pope himself tweeted on Monday: “Moved by the prayers and immense solidarity shown little Alfie Evans, I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.”
Doctors at Alder Hey tell a different story. Mr Justice Hayden had said that medical evidence showed there were no more tests that could be “sensibly undertaken” to find a cause for Alfie’s condition.
The fact that doctors say Alfie could not sustain life for an extended period of time off the ventilator, led the court to conclude the 23 month-old needed palliative care. To move him away from the intensive care of Alder Hey (whether home or abroad), would leave him vulnerable, “not least to infection”, said doctors. The judge said: “His anticonvulsant regime, which is, in itself, of limited effect, risks being compromised in travel. The journey will be burdensome. Nobody would wish Alfie to die in transit. He requires peace, quiet, and privacy in order that he may conclude his life, as he has lived it, with dignity.”
Steven Woolfe, MEP for North West England, is launching a campaign for “Alfie’s Law”, which would give the parents of terminally-ill children more say. The campaign recognises the dedication of doctors and nurses treating sick children, but also that parents have “moral rights” about their care. He said: “The cases of Charlie Gard, Ashya King, and now Alfie Evans, show a dangerous trend of public bodies depriving parents of the right to make decisions they believe are in the best interests of their children.
“Parents’ rights should neither be ignored nor dismissed as irrelevant by hospitals and courts, who believe they know best and have the power, money and resources to overwhelm families who simply want to save their child.”
Behind it all are two parents who know they are in the final stages of a fight for the little boy they had when they were 18 and 19. Their courage and stoicism has been behind it all.
Alfie’s father has represented himself in court, having gone through six legal teams. The judge said: “It says much about his commitment to his son and the time and energy he has directed to this case that he has absorbed the issues so completely and intelligently. He believes passionately that his view of Alfie’s future is the correct one. Alfie could have had no more articulate voice on his behalf.” On visiting Alfie’s bedside, Mr Justice Hayden observed: “The atmosphere around Alfie was peaceful, dignified and though some might find it surprising for me to say so, very happy. The primary engine for all this is Alfie’s mum.”
“Alfie’s bed is festooned with toys, his walls plastered with photographs and his supporters have delivered a variety of football shirts to him. One was signed by the Everton squad specifically for him. In my judgment, his life has true dignity.”
The more challenging question, he added, was whether that life could be maintained.
‘He believes passionately that his view is the correct one. Alfie could have had no more articulate voice on his behalf’ – Mr Justice Hayden on Tom Evans