New figures from mental health charity Rethink show that more people than previously thought had either been sectioned or know someone who has: 30 percent.
But the 1983 Mental Health Act, which turned 35 years old this year, is not perfect. The act, under which patients can be involuntarily detained, was initially conceived "in a time where people with a history of mental illness couldn't be MPs, and when people in hospital for mental illness weren't allowed to vote", Rethink's Policy Offer Will Johnstone says. "It's desperately out of date and out of touch with how we see people with mental illness in the 21st century."
Now, a new review hopes to isolate its current problems, giving patients back their dignity and both exploring and challenging some of the systemic biases that affect patients.
"The overall principle underlying the Mental Health Act remains valid, we believe: that the state has a duty to look after its vulnerable, which includes sometimes those with the most severe forms of mental illness, while at the same time doing the best it can to also respect people's autonomy," says Sir Simon Wessely, a former president of the Royal College of Psychiatrists, who in 2017 was chosen to head up the review by Theresa May.
"This always has to be a balance, though, and we don’t think we have that balance quite right at the moment. We need to recalibrate the system towards paying more attention to a person’s wishes, preferences and choices, even when they are detained, and to ensure that what we do is compatible with current ideas and concepts around human rights in the field of mental health."
Though sometimes necessary, the experience of being sectioned is not always pleasant. Hannah, now 38, was first sectioned in 2007, when she was working as a nurse at Chelsea and Westminster Hospital in London. She describes the experience as "terrifying".
"I don't know whether they assumed that because I was a nurse I knew a little bit more about the process, but really I didn't know what was happening," she says. "I thought I’d lost my job… My whole world had caved in. Everything I’d been trying to keep together just fell down, crumbled."
Hannah's first admission – one of many – lasted for eight months, followed by five years of similar admissions to hospital. It got easier, she says, but that first experience was "very, very negative".
"You don't have any choice about where you go – most people in mental distress would want to go somewhere calming, somewhere relaxing, somewhere they can do something they enjoy doing," she explains. "But you end up somewhere where they take all that away. There's nothing relaxing about those places. They're just chaos.
"So you're put in an environment for your wellbeing, and told it's for your wellbeing, but you know that it's making your wellbeing worse. Some of the restrictions that are put on you are ridiculous – we couldn't have hot water, so for about six weeks my friend and I managed to smuggle a kettle in that they didn't know about. Basic things like having a decent cup of tea are taken away from you. I couldn't have a bath after 7PM. So even the things you knew would help you were taken away.
"So, in that sense, you're sectioning people, saying it's for their safety – but you're putting them in an environment that makes it worse. That was generally my experience."
This isn't uncommon. Raf, a young man who was in secure services for several years, also speaks of the "weird rules" that were put into place when he was detained under the Act.
"You weren't allowed to drink coffee because of the caffeine content, but you could drink as much tea as you wanted," he says. Coffee is 50mg of caffeine per cup, tea is 45mg, but they'll say you can't have any coffee ever because of the caffeine. It was an accumulation of little rules like that."
A recurring theme when talking to those detained under the Act is the lack of dignity that often prevails. In 2017, a survey of over 8,000 people who use mental health services, and their carers, found that 49 percent disagreed that people are treated with dignity under the Mental Health Act. Fifty percent said they "would not be confident that their human rights would be protected" under the Act, and 72 percent disagreed that “the rights of those living with mental illness are protected and enforced as effectively as those for people living with a physical illness”.
"We know from the survey that far too many patients do not feel treated with dignity and respect on our mental health wards," says Clem Maddock, consultant psychiatrist and specialist advisor in Mental Health and Mental Capacity Law at the Royal College of Psychiatrists. "There's no one easy answer to that – it's clearly about the culture of wards, staffing, adequate access to therapies including occupational therapy, psychological therapy. Having adequate access to hot and cold drinks – things we might take for granted. Clearly, things need to improve."
This doesn't mean that some care isn't "excellent", Maddock stresses. "But it's about learning from those examples of excellent care, and how that can be replicated across the country. There's too much variation, and some of it doesn't meet the standards of what we’d expect for our loved ones or ourselves."
The powers of the Act are not used equally, either. In the last ten years in England, there's been a 47 percent rise in the Act being used to detain people, and black and ethnic minority groups are hugely overrepresented, something Johnstone describes as "a shocking and persistent problem". Black people are four times more likely to be sectioned.
Maddock believes we need a "whole system approach". "We need to ask what's happening in society, what's happening within the healthcare system and what's happening at the individual level for that person."
There are also barriers to fully understanding why certain groups are disproportionately represented. "There are really big gaps in the data," says Raf, who chaired the working group on Asian and other ethnic minorities. "The way we collect the data is really flawed. For example, I'm Arab. When it comes to filling out a form or survey, Arab isn't on there. Sometimes I select 'Other', sometimes 'White other'. We struggle to know the experiences of other communities."
Wessely tells me that the working review hopes to address some of these issues. “For me, the overarching theme of our review is about the issues of choice, dignity, respect and people’s wishes and preferences,” he says.
“We’ll be making a series of important recommendations that will I believe change this, and mean that professionals will be able to pay more attention to these issues. It will become much harder to not respect the situation where a person says in advance that if I get ill again – which sadly is not infrequent – then this is what I want to happen to me.”
The team also want to ensure that people get treatment when they’re admitted – something Hannah notes was not the case when she was detained. She eventually got treatment after several years at the Cassel Hospital in Surrey, where patients are not under section.
“We’re putting people in supposedly a safe place but not giving them treatment. My friends were shocked when they realised I hadn’t been given any treatment – there was one psychologist for five wards. When I went to the Cassel, there were sixteen patients to four psychologists.
“I wish there was a clause in the Mental Health Act that said not only do they have a duty of care but also a duty to actually give people treatment which is appropriate.”
Wessely also acknowledges this element. "Sadly, it's clear that, for some, especially those with learning disability or autism, they are detained well beyond any reasonable time, and not because they need treatment but because there are no suitable community alternatives. Some definitely get worse as a result of being detained. This isn't per se a fault of the Act, but of a lack of alternatives. But nevertheless we want to tighten this up to make it less likely to happen.
"So, overall, I want our review to speak to the people, and there were a lot of them, who told me, 'I can understand, looking back, why I was detained,' and a few add, 'I think it saved my life' – but far, far too many then go on to say, 'But I can't understand why it was such a terrible experience.'"