Deaths unexplained, lives devastated: here’s another national tragedy hidden in plain sight

  • 1/21/2024
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Just over a week ago, I got a message from a grassroots group in the east of England. “Can you investigate this?” it said. “We’re hitting similar brick walls to the Post Office campaign.” There was a link to a local ITV report, broadcast two weeks before Christmas. When I watched it, I was dumbfounded, but also aware that it was about a set of very familiar British themes: threadbare public services, a managerial class that seems to constantly resist accountability, thousands of people whose lives have been ruined – and things that should have long since broken into the national conversation but have so far been largely ignored. In this case, what has happened has been doggedly and brilliantly covered in the Eastern Daily Press, and on local broadcast news – but its coverage in national outlets has tended to be muted and sporadic. What I was sent by the Campaign to Save Mental Health Services in Norfolk and Suffolk was about their calls for a criminal investigation into an apparent scandal that decisively surfaced over the summer, centred on the Norfolk and Suffolk NHS foundation trust (or NSFT), which sees to mental health provision across those two very large English counties. It is centred on the “unexpected” deaths of 8,440 people between April 2019 and October 2022, all of whom were either under the care of the trust, or had been up to six months before they died. The story of the failures that led to that statistic date back at least a decade; the campaign says it amounts to nothing less than “the largest deaths crisis in the history of the NHS”. The figure of 8,440 was the key finding of a report by the accounting and consultancy firm Grant Thornton – commissioned by the trust, ironically enough, to respond to anxious claims by campaigners, disputed by the trust, that there had been 1,000 unexpected deaths over nine years. There are no consistent national statistics for such deaths, and no universal definition of “unexpected”: in Norfolk and Suffolk, a death will be recorded as such if the person concerned was not identified by NHS staff as critically or terminally ill; the term includes deaths from natural causes as well as suicide, homicide, abuse and neglect. The period in question includes the worst of the pandemic, although the trust’s own annual deaths figures did not reach a peak until 2022-23. But the numbers still seem jaw-dropping: they represent an average of about 45 deaths a week. To put that in some kind of perspective, earlier reports about the trust’s deaths record had raised the alarm about a similar number of people dying every month. And the Grant Thornton report included another key revelation: the fact that the trust’s record-keeping was so chaotic that in about three-quarters of cases, it did not know the specifics of how or why the people concerned had died. After its publication, moreover, there were more revelations about the trust, and its culture and practices. A report on Newsnight said that Grant Thornton’s text had been edited “to remove criticism” of the trust’s leadership, which an official response put down to “fact-checking”. A few months later, the BBC revealed that the NSFT had recently spent £850,000 on help from a PR firm. The trust is on to its ninth chief executive in 10 years, and has been put in special measures four times; the run of policy decisions that sit behind this story date back to a “radical redesign” in 2013 that led to cuts in staff and bed numbers, and huge controversy. But clearly, what needs to be in the foreground of this story are the people who have died, and the loved ones they left behind. Many of them were the apparent casualties of sudden gaps and delays in care – and early discharges – that often happened amid fragmented systems in which one “team” did not seem to know what other parts of the system were doing. Last Tuesday, for example, I spoke to a bereaved father whose son had been under the care of the trust – or what passed for it – and whose death was one of those highlighted in the report, but has yet to reach an inquest. In his teens, he had been diagnosed with bipolar disorder. At 18, he had been transferred from the part of the trust that deals with children and young people to adult services – and for a year and a half, he was never under the consistent care of a psychiatrist. In the midst of repeated suicide attempts, his family asked for a formal review of his treatment at least six times, but their requests were “constantly denied”. Eventually, his GP issued him with a prescription for medication used to treat cluster headaches. “No one in the mental health team picked up that he’d been given [this] prescription,” his father told me. “If it had been picked up, it would have gone straight back to the GP: ‘That’s inappropriate. You can’t do that.’” Amazingly, an identical prescription was issued only a matter of weeks later. His son overdosed on the tablets he was given, and died. I then spoke to Sheila Preston, an unbelievably resilient campaigner who spent nine years on the trust’s board of governors, and is about to return to that role. She lost her son Leo to a heroin overdose in November 2016: his death, she says, is part of a story of failure that long predates the outrage over the recent report. He had been diagnosed with schizophrenia 18 years before, and got used to regular visits from a mental health nurse, which suddenly stopped: two months later, when he was living in a rented flat his mother says had been “cuckooed” by people involved in the local drug trade, he was dead. NSFT insists that at his inquest, the coroner “made no criticism of the trust”, but his mother has a very different view. “I’m angry,” she told me. “I can never get over my anger.” I got the same sense of unbearable fury from Nick Fulcher, whose mother-in-law, Peggy Copeman, died in December 2019: another death that took its place among the 8,440. She had a past diagnosis of schizophrenia; because of a shortage of hospital places, when her mental health seemed to suddenly worsen, the trust decided – despite the fact that she was 81, and clearly frail – to move her from a care home in Norfolk to a privately run hospital nearly 300 miles away in Somerset. Fulcher’s wife, he said, was told Peggy would be leaving at 10.30am, and set off with the intention of saying goodbye and checking everything was in order – but when she arrived at the care home, the private “ambulance” booked for her mother had already left. Peggy had not been physically examined before the six-and-half-hour drive (the trust says such checks were “refused”), a failing that was repeated three days later, when she was suddenly ordered to be moved back to Norfolk. She had a fatal heart attack, and died on a lay-by on the M11. Her family was notified of her death four hours after it happened; her inquest subsequently concluded that she hadn’t received “prompt medical attention”, and the transport firm concerned was barred from working in the NHS. The trust insists it is “deeply sorry for the distress caused to Peggy’s family” and says it has made “several improvements” since her death. “She wasn’t fit to come back,” Fulcher told me. “She was treated absolutely disgustingly.” Whatever the official pledges of improvement, one of the people who insists that the trust’s deepest failings are ongoing is Natalie McLellan, who lost her daughter, Rebecca, last November. Rebecca was a trainee paramedic based in Ipswich, who her mother says lived for her job. She had a diagnosis of bipolar disorder, and the trust had assigned her a “care coordinator”. But he eventually went on leave – and for three weeks in the summer of 2023, Rebecca was left without care or help, despite a long history of depressive episodes and her experiences of serious suicidal urges. Natalie read me Rebecca’s own account of what had happened: she repeatedly phoned the trust and was assured someone would contact her, but the calls never came. When she turned up in person at her local clinic, she was turned away, and told that if she did not leave, the police would be called. These experiences, Natalie said, came to define her daughter’s understanding that if she went into any kind of crisis, it would be met with neglect and indifference. In mid-November last year, staff at the trust said her only option was to switch her medication to lithium, a drug her mother says she was “terrified” of. Three days later, she took her own life. The trust now talks about “fast-paced and widespread change”. It says that although “increasing demand and gaps in the NHS workforce are continuing to impact waiting times for services across the country”, it has “processes in place” for covering staff absences, and that “we continuously take steps to reduce unexpected deaths”. It says it has taken “improvement actions” on its record-keeping, and has “more to do, especially with regards to processing and reporting mortality data”. But these are the kind of stories that people in Norfolk and Suffolk characterise as the constituent parts of a vast institutional tragedy. They have a handful of central demands: investigation by the police, a public inquiry, and the breakup and refounding of a trust that they think is broken beyond repair. After I had spoken to people who had been bereaved, one campaigner told me the trust’s habitual response to bad news was to “deny, deflect, distract and delay”. But they also had another fear, rooted in the fact that the reporting of “unexpected” deaths across the NHS is so patchy. Most of us know how bad the national crisis in mental health provision is, and that the need for care is constantly on the increase. But what gaps does that leave, and who falls into them? “We think the numbers of deaths in Norfolk and Suffolk are relatively high,” this campaigner told me. There was then an uneasy pause. “But because the national system is so chaotic and inconsistent, nobody can tell.” I instantly knew what they meant: that there could be many more of these catastrophes – hiding, as British scandals often do, in plain sight. John Harris is a Guardian columnist

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