Sue Willgoss knows more than most the terrible human cost of a deficient mental health system. Two years ago, she lost her 25-year-old son, Daniel, to a prescription drug overdose after his carers failed to heed her warnings that he was an imminent suicide risk. Since then, Willgoss, a publican in Lowestoft on the north Suffolk coast, has been campaigning to stop other young people losing their lives to mental illness. She runs weekly drop-ins for locals who are lonely and isolated, champions the rights of service users in the community, and has been a bulwark for people in crisis.
It’s an uphill battle in a place with more than its share of social problems. Demand for psychological support has risen alarmingly in Lowestoft in recent years, community leaders say, and its overstretched mental health services haven’t been able to keep up. The Norfolk and Suffolk NHS Foundation Trust, the authority responsible for the region, was graded “inadequate” by official inspectors three times in the past five years because of a host of safety and management failings.
New leadership brought modest improvements in the months before the coronavirus outbreak, Willgoss told me, but the service is still hampered by excessive waiting times, poor communication and overburdened staff. “Things have to change,” Willgoss says. “Daniel’s experience cannot be how it is. Our people can’t be treated like that.”
A story of neglect
Lowestoft is a case study in the gulf between the UK government’s ambitions for mental health care and the reality on the ground for the millions of Britons whose lives are disrupted by mental illness. In recent years, successive Conservative governments acknowledged that the sector has been woefully neglected – mental health accounts for a quarter of the disease burden in the UK but gets only 13% of NHS spending – and promised to bring it up to the level of other parts of the health system.
In her first speech as prime minister, Theresa May identified the lack of adequate mental health treatment as one of the “burning” social injustices she would dedicate her premiership to eradicating. Her government’s long-term plans for the NHS included promises to significantly expand access to psychological therapies and an additional £2.3 billion a year in annual funding for the sector.
Those investments were welcomed by the sector, but they’re far from sufficient after years of underfunding. We are still “miles off” having an adequate mental health system, says Andrew Molodynski, a psychiatrist and the lead mental health spokesperson for the British Medical Association.
Even before the Covid-19 outbreak turned the NHS upside down, mental health providers in some parts of England and Wales were teetering on the brink, Molodynski says. Chronic underfunding and staff shortages mean that crucial therapies are often unavailable – or that waiting times are so long that treatment is effectively nonexistent. Only a third of children with mental health problems receive support. People who desperately need help are forced instead to cobble together whatever support they can from charities, private providers, friends and family.
“The majority of people who do come to mental health services get well looked after. But there are many, many people who could and should get through but don’t, and who either have to cobble together different bits of care from the voluntary sector, the private sector, and from friends and family to try to compensate for what the NHS should be doing to help them,” Molodynski says.
For those in crisis, there are sometimes so few inpatient beds that they’re sent to hospitals hundreds of miles away from where they live. “Some people will take their own lives because they’ve been unable to access care while they’re on waiting lists,” Molodynski says. Others end up on wards so rundown that they’re “not acceptable in the 21st century”. And the situation appears even bleaker if you look beyond the NHS: Social care and public health services provided by local authorities, which also play an important role in supporting people with mental health problems in the community, have been ravaged by years of austerity.
The coronavirus outbreak will have an enormous psychological toll, mental health experts say.
Analysts put the cost of mental illness to the UK economy at more than £100 billion a year. But that, of course, doesn’t account for the anguish of millions of individuals and their families. The damage to careers, education and relationships is incalculable. People with severe mental illness are disproportionately likely to be poor, unemployed and in bad physical health; their life expectancy is twenty years lower than the rest of the population.
Suicide is a common cause of death, particularly among men under 50, and appears to be on the rise. Last year, 5,691 people in England and Wales took their own life, according to the latest Office of National Statistics figures.
It stands to get a lot worse because of Covid-19. The coronavirus outbreak will have an enormous psychological toll, mental health experts say, affecting a wide swathe of the population in different ways for years to come: people who contracted the virus, frontline health and social care workers, those who had existing mental health difficulties that were aggravated by the lockdowns.
The Centre for Mental Health think tank estimates that 8.5 million adults and 1.5 million children will need new or additional support for mental health problems as a direct result of the pandemic. And that number could grow if the economic downturn drags on. “Our biggest worry is actually the effects of the recession,” Molodynski says. Suicide rates increased after the 2008 financial crash and it would be “foolish” not to expect a similar increase if there’s a spike in long-term unemployment because of the coronavirus. (A recent University of Manchester study found no evidence that the first lockdown caused a rise in suicides, but researchers didn’t rule out an increase in the long term because of an economic slump.)
The pandemic is putting extraordinary stress on services that were already overextended. In the early stages of the outbreak, providers rushed to respond to an unprecedented situation, redeploying staff and reconfiguring hospital wards. Within weeks, services that were built around face-to-face personal contacts switched to using mainly digital means to communicate with patients. Referrals fell by up to 40% in the first lockdown as people sheltered in their homes, but, by the summer, demand was rising and evidence of the strain on the system was mounting.
Reports by mental health organisations and NHS providers, along with my own interviews in Suffolk and elsewhere, portrayed a troubling situation in which people who depend on mental health services were abruptly cut off from vital clinical and social care supports, while others who desperately needed assistance weren’t able to get it.
In Lowestoft, I spoke to Melissa, 19, who reached out to local mental health services for help during the pandemic because her anxiety was spiralling out of control and making her suicidal. “I was supposed to have a telephone consultation,” she said, “but then they cancelled it. And then I didn’t hear anything back.”
Melissa was later transferred to a different team in the area, who she said were attentive and helpful – but others weren’t so fortunate. In the first few months of the pandemic, I was in contact with a 28-year-old woman in London who told me she had bipolar disorder. She described a long list of failed attempts to get help and told me she felt like she was falling through the cracks because of the pandemic. “I am fairly certain that I’m going to die before this is all over,” she wrote in one email. A few months later, she killed herself.
There was already a perception that Boris Johnson’s administration wasn’t committed to improving mental health.
In the autumn, a report by a mental health taskforce at the Department of Health and Social Care (DHSC) said there was “significant evidence” of disruption to mental health care and warned that providers were now getting large numbers of new patients who’d never before needed support for their mental health.
“Planning and resources for this increase in demand for services is clearly an imperative,” the report stated. The authors also noted that inequalities in mental access and provision “reflect and reinforce the structural inequalities in society that drive the need for mental health services and the racial discrimination persists in the health and care system and wider public service infrastructure.”
Without urgent and far-reaching action by the government, mental health experts say, the system could break – staff will burn out, more people will develop severe mental illnesses, lives will be lost to suicide. But there are serious doubts that it is a priority in Westminster with the government already run ragged trying to bring Covid-19 under control and to rescue the economy.
There was already a perception in the sector before the outbreak that Boris Johnson’s administration wasn’t as committed to improving mental health as Theresa May’s had been. One “really worrying” sign, according to Andy Bell, deputy chief executive of the Centre for Mental Health, was the lack of serious mental health investment in Johnson’s headline announcements about the NHS during the 2019 general election campaign.
“Under Theresa May's government mental health was an absolute priority across many areas of government and it was made very, very clear. And I don't think we're hearing that to quite the same extent at the moment,” Bell says. Those concerns are only growing as the pandemic goes on. Molodynski of the BMA says that he finds it hard now even to get a meeting with DHSC officials to talk about mental health.
As gaps in the system widen, these experts worry that communities will be left to carry the burden on their own, when they’re also being depleted. Local authorities, weakened by years of cuts, are facing another funding crisis. Charities have also been devastated by the pandemic, losing vital sources of fundraising through shops, events and donations. The chancellor, Rishi Sunak, set aside £750 million in emergency assistance for the sector but it won’t be enough to sustain the thousands of voluntary organisations providing frontline services around the country. “A lot of them were existing on vapours anyway, particularly the smaller, localised organisations,” Bell says.
Let down by the system
In Lowestoft, Willgoss is doing what she can. She runs a campaign called #LiftLoudforDanny. On a recent Thursday night, she invited me to join one of her weekly drop-in meetings by Zoom. At a sports club in the town, seven people sat around a table drinking tea and sharing experiences. They all had disturbing stories to tell about how they had been let down by the regional services, and their mistrust of the system was palpable. “Some of them feel like they’ve been abandoned, and don’t matter,” Willgoss said.
Willgoss’s campaign relies on modest donations from locals and the goodwill of volunteers like her who know what it’s like to have your life thrown into turmoil by mental illness. It’s not easy to keep it going. Business at her pub has been badly disrupted by the coronavirus restrictions, and she’s not sure how long it can keep trading. And her own mental health has been up and down. But she’s determined that nobody else in the community should go through what her son did – that she can turn Daniel’s death into something meaningful.
The meetings Willgoss hosts have become a lifeline, people at the drop-in told me – two hours a week when they can get respite from their private anguish and talk openly among peers without being judged. “It’s quite sad that we have to do this,” one of the volunteer organisers added, “but there’s nothing else out there. We fill a gap for people. If it wasn’t for us, people would be suffering twice as bad.”