The directors of the Gaslini Children’s Hospital in Genoa last week called a press conference about progress in the condition of one of their patients. Tafida Raqeeb, the British child at the centre of a right-to-life struggle which in October her parents sensationally won, had been removed from intensive care just three months after the High Court in London was told that she had no hope of recovery.
The five-year-old had been so gravely harmed from huge bleeding on the brain last February, the argument went, that only death could be in her best interests – even if she emerged from a coma.
Permission was sought to allow the Royal London Hospital to keep Tafida in the UK and to withdraw the ventilation and feeding tubes that were keeping her alive, with the sole purpose of ending her life before her organs were removed for transplantation.
But the case made by the National Health Service was rejected by Mr Justice McDonald, who weighed it against Tafida’s right to free movement within the European Union, her religious convictions (she and her family are Muslims) and the sanctity of life itself.
Since transferring to Italy, Tafida has undergone surgery to relieve pressure on her brain and a tracheostomy to make it easier to breathe unaided. She is now being weaned, with success, off her ventilator.
Tafida began 2020 with a move to her own room, which is equipped for physiotherapy and located within a unit where she can also undergo hydrotherapy, leading Shelina Begum, her mother, to declare: “Her recovery starts today.”
“If anyone could see Tafida now, they would be shocked,” she told the Daily Mail. “There are no tubes in her nose any more, and she is always opening her eyes. She has also come off the catheter. She is in control of her urinary function now.”
Miss Begum added: “It shows that the medical opinion that was placed before the court in the UK is being proved wrong – by Tafida herself.”
The pace of Tafida’s recovery certainly offers hope and if she continues to make progress it will be difficult to dispute the trenchant analysis of Miss Begum, a 39-year-old solicitor from East London.
Her recovery should also invite hard questions about how and why the NHS got it so spectacularly wrong.
Was it because of factors involving hospital personnel? Or was it more deliberately about policy, such as the protection of limited cash and hospital beds, and the ability of the NHS to keep patients where it wants them and treat them how it sees fit?
Either way, it is time for a change. The NHS was founded on the noble principle that health care should be free at the point of delivery. That should not preclude reforms of an institution which the Conservative politician Nigel Lawson once described as “the closest thing the English people have to a religion”.
The NHS, after all, has a track record of failures that must be considered alongside its life-saving work. Think of the Alder Hey organs and the Bristol hearts scandals, the Shrewsbury and Morecambe Bay maternity scandals, the Gosport War Memorial Trust Hospital and the Stafford Hospital scandals.
If people want to know about the real culture of the NHS, they might have benefited from hearing of the experiences of about 1,000 families who relayed their stories during the Neuberger review of the Liverpool Care Pathway (LCP).
The review led in 2014 to the abolition of the end-of-life protocol and its condemnation as a “national disgrace” by Norman Lamb, then care services minister. But it was deficient in that it lacked the status of a full public inquiry, meaning that the evidence so many families wished to give was not officially documented.
Furthermore, there are reports that doctors still claim a gift for predicting death and still prescribe the sort of palliative care that ensures their prophecies are self-fulfilling, features which made the LCP so fatally flawed.
Yet there is little accountability, with the threshold for criminal convictions of medics so high that police seldom wish to hear complaints of aggrieved relatives.
NHS complaints processes are hardly neutral in the way they are conducted, and complaints to the Ombudsman can often take years to resolve without the final ruling carrying any statutory force.
Together such factors help to create and encourage the “throwaway culture” so frequently lamented by Pope Francis.
Add to this the financial imperative, and it is easy to see that what is being disposed of most wrongfully in this context are the lives of the sickest, most elderly and most vulnerable of people, viewed as unworthy consumers of finite resources.
If the NHS is imperilling the lives of the people for whom it was founded to serve, then surely it is not the best health service in the world; it is unfit for purpose. It is reasonable therefore to consider if there might be a better way of doing things.