Speaking to teenagers, activists, charities, and professionals about what needs to change to make NHS services work for everyone
Mental Health: Beyond Awareness is a five-day campaign asking what we can do for mental health issues beyond "raising awareness". Young people are more aware of mental health issues than ever, but our services are broken, the internet is stressing us out, and self-medication is on the rise. Who is campaigning for change? And how can we help ourselves? This week, Dazed is aiming to find out.
It took Aaliyah Esat, a 21-year-old mental health activist from Leicester, 10 years to get the diagnosis she needed when she was a child. She was first referred to CAMHS (Child and Adolescent Mental Health Services) when she was just seven, after parents and teachers noticed that she found it difficult to concentrate. After a couple of appointments, she was discharged with no diagnosis, and eventually saw the service again when she was 14, this time with symptoms of anxiety. Later, at 16, she was diagnosed with depression. The following year, after she had waited six months for treatment, she decided to seek a private doctor’s opinion, and was finally given a diagnosis of ADHD, addressing the problem she was originally referred for at the age of seven.
With over a decade in the CAMHS system under her belt, Aaliyah’s story reflects so many young people’s experiences. Like many, she found she had to be referred multiple times, and look for alternatives, before getting the care she really needed. Like many, she had to wait far too long for help. And, like many, she found the whole experience was in itself tough on her mental health: “A lot of your choice is taken away from you,” she told Dazed on the phone. “It’s a lot of not being listened to.”
For many young people in the UK, mental health “awareness” arguably isn’t a problem. “Young people are, in my experience, some of the most clued-in people with regards to mental health,” says Clara, a CAMHS nurse based in the south east. Richard Crellin, policy and research manager at The Children’s Society, agrees: “There's a lot more talk in the media, on television...I think children and young people are much more aware of mental health than perhaps in previous generations.”
The problem young people are facing is not one of awareness – rather, there’s a crisis in the services being provided for them. While referrals to CAMHS are increasing, 60% of the young people referred go untreated. A 2018 report by charity YoungMinds found that 66% of young people said they had difficulty accessing support – 44% found it hard to get a CAMHS referral, and 61% had a long wait for actual treatment. Last year, the case of “girl X” hit national headlines, illustrating how desperate the situation is for some, as the NHS couldn’t locate a single bed anywhere in the country for a suicidal 17-year-old.
As YoungMinds’ Director of Campaigns Tom Maddens explained to Dazed in an email, this comes down to a lack of government support. “The government (recently announced) some welcome initiatives, but they don’t go far enough. Children’s mental health services need increased, long-term funding, as well as a bigger emphasis on preventing mental health problems from developing in the first place.”
“A very simplistic summary of government activity on young people’s mental health would be ‘all rhetoric and no action,’” says Natasha Devon, a mental health campaigner who speaks in schools across the UK, and author of A Beginner’s Guide to Being Mental. “They are unwilling or unable to commit the drastic amounts of funding and policy changes which would be required to make a noticeable difference. Services are stretched beyond capacity. The system is broken.” Dazed spoke to Aaliyah and more young people, as well as activists and organisations, to find out the five most important things that need to happen if we are to begin to fix it.
SET A CUT-OFF FOR WAITING TIMES
Like Aaliyah, two more young people who spoke to Dazed for this article also sought private help when they were confronted with overlong NHS waiting times. Catherine, 17, in Edinburgh, was seeking help for OCD and anxiety, but when she was told it would take “a number of months” to receive therapy, she sought a private doctor instead. Lucy, 17, from Leicestershire, was offered two group therapy sessions via CAMHS, and is currently on a waiting list for individual therapy. She writes in an email: “I now receive private counselling because I was struggling so much. If I was still waiting for one-to-one counselling from CAMHS, I don’t think I’d be here today.”
For young people for whom seeking private therapy is not an option, waiting lists are dangerous. Jane, a 17-year-old from Birmingham, tells Dazed that she took an overdose in March, after she had been on a CAMHS waiting list for two months. “After my overdose, they made me skip the waiting list, which I found quite pointless because when I needed help, I wasn’t given it,” she reflects. “When things hit rock bottom, then they started to give me help. You shouldn’t (only) be able to access services when you’re in a crisis or a critical stage.”
The most recent report by The Children’s Society found that there’s an average of a three month wait for help when young people are referred to NHS mental health services. “That’s the average,” stresses policy manager Crellin. “In some areas, young people are waiting as long as seven months. For those young people, they've been brave enough to ask for help, and then they face an endless wait with usually very little information during that wait. You can imagine what that does to their mental health condition, to their self-esteem, their confidence.”
In December, the government announced plans to trial a maximum four week waiting time in a few “pilot areas” around the country. Crellin explains to Dazed why their plans aren’t good enough: “Those are just going to be pilots, in a limited number of areas, and they're going to take a few years to study the implications of that, (before they) make a decision about national roll-out. So, for most young people across the entire country, there isn't much good news on waiting times, probably until the middle of the next decade.”
“I regularly hear of young people being put into inpatient care hundreds of miles away from their families” – Natasha Devon
MAKE THE TREATMENT ACCESSIBLE FOR PATIENTS
When a young person is finally at the end of their wait, many find that the care they’re offered is not the right fit for them. It might be too far away; they might not receive enough sessions, or they might not be able to make it to the appointment slot they’re offered. “I regularly hear of young people being put into inpatient care hundreds of miles away from their families,” says Natasha Devon. “The commonest complaints I hear are that CAMHS services are not welcoming, that the number of sessions given (usually six for CBT) are not sufficient, or that the therapist assigned was not able to establish a trusting relationship.”
Lucy, the East Midlands teenager currently on a waiting list for therapy from CAMHS, also felt that the help she was offered initially wasn’t right. She was offered “two group sessions,” which she says “wasn’t helpful as I was ashamed to speak out and (felt) judged...At the end of the day, mental health is different (for) every person!”
The Children’s Society has also noted that there’s a huge problem with young people missing appointments – over 150,000 were missed in 2016 – which is down to how inflexible the service can be. “Imagine waiting that three months to get your first appointment, and then you get an appointment card through the post that says you're due in the service next week at 11am,” says Crellin. “And you think to yourself, 'I'm supposed to be in school that day, my mum's at work, how am I gonna get to the service?' You might have other things going on in your life, you might be experiencing domestic violence, you might be at risk of sexual exploitation. Often, young people have quite chaotic lives and the health services don't seem to engage with that.”
So how can the services get closer to lives of young people, and help them more? Crellin cites the need for a more flexible booking system, as well as “making sure that young people can access mental health support in the community. You don't need to be in a hospital, in a clinical room opposite a doctor – you can be doing it in youth centres, you can be doing it in classrooms in school, you can be doing it in your own home. Instead of expecting them to come to us, we need to get out there and go to them.”
TREAT 16-25 YEAR OLDS UNIQUELY
For 17-year-old Lucy, the childish front of CAMHS also made her feel alienated when she attended her first appointment. “The building was very much suited to children, with bright colours (and) children’s games out,” she explains. “(It) made me feel having issues at my age was stupid and the younger generation should have more help than me.” She believes that a separate service for teenagers/young adults would make sense.
Currently, in most parts of the UK, young people are transferred from CAMHS to adult services at the age of 18. Many young people find the transition to be stressful. When Aaliyah was moved from one service to the other at the age of 18, her discharge form never actually reached the adult NHS service. She says, “you’re still a young person at that age...It’s really scary going from being treated like a child to being treated like an adult, almost overnight. I really don’t think that 18 is the right cut-off; it’s a really difficult time.”
Nurse Clara agrees. “The transition from child to adult services is very lengthy and stressful for the young person,” she writes. “There should be a bridge-the-gap service, as an 18-year-old should not be treated with the same service a 64-year-old is, they are going to have very different obstacles to face.”
For 18-25-year-olds, accessing adult mental health services – especially when it’s their first time moving away from home, a tumultuous time for anyone – can be daunting. Nadia is a 20-year-old, London-based student, who spoke to Dazed about a friend who took his own life during their first year of university together. He tried seeking help via his university, who told him to instead seek NHS support. After waiting six weeks for an initial diagnostic appointment on the NHS, he was placed on another waiting list for treatment; he passed away before his treatment could begin.
Nadia believes that throughout the process, her friend didn’t feel listened to, and that this contributed to his low mood in the final weeks of his life. She says that when he went to see his GP for a referral, he felt “reprimanded” and “scolded” for drinking alcohol. “He wasn’t very good at opening up, and once he did it, being told (he was) doing the wrong thing...just lowered his self esteem more.” Being placed on a six week waiting list, says Nadia, made him feel that he wasn’t “a priority.” “He really was seeking help, even though he was getting pushed quite a lot – he wanted it.”
“There needs to be more emphasis put on the care of the individual, seeing the individual as a person and not a statistic, because everyone’s care needs to be different” – Aaliyah, 21
ACTIVELY REACH OUT TO YOUNG MEN AND BOYS
For young men and boys, it’s known that seeking help can be especially hard – statistics show that young girls are more likely to be hospitalised or prescribed anti-depressants, while boys are more likely to die from suicide. It’s a fact that’s underscored by the lack of boys willing to speak to Dazed for this article. Simon Gunning, CEO of men’s mental health charity CALM, explains to Dazed that it’s important that outreach programmes exist to assist boys in opening up, away from a clinical environment. "Many boys and young men feel pressure to confirm to a stereotype of the strong, silent male. And then when they do break away from the constraints of this outdated form of masculinity, unfortunately there are not many routes open to them.
"CALM focuses on reaching men and boys in ways that are relatable and accessible, and through non-clinical spaces – such as passions like music or sport. This is crucial given that, whilst the NHS plays a vital role in suicide prevention and supporting those with mental health problems, services are still being cut and underfunded. It’s also important to build support networks and resilient behaviours so we are not waiting for boys and young men to reach crisis point before they can get any help.”
LISTEN TO YOUNG PEOPLE
Some young people who spoke to Dazed reported feeling “judged,” or “like a piece of paperwork” when they accessed NHS mental health services. “I think there’s a real problem with the way kids aren’t listened to,” says Aaliyah, who has been volunteering with YoungMinds for the past five years. Her focus is campaigning for young people to have more autonomy, and to be able to participate more in their own care.
“It’s really strange, because the people who are going through the stuff are the ones who know what’s up. They might not be able to see it as clearly as an outsider, but they’re the ones living with it. There were a couple of instances when I was just told that I was fine, when I really wasn’t. A doctor knows what is good for you, but also, you should be able to say, ‘actually I think maybe something else would be more suitable.’ And to be taken seriously.”
“There needs to be more emphasis put on the care of the individual, seeing the individual as a person and not a statistic, because everyone’s care needs to be different,” she continues. Her words ring especially true in light of all the case studies mentioned in this article: each has had an entirely different experience, and each has found barriers to getting help in different places. They all need something to change, and they all deserve to have their views heard. “It’s easy to just lump everyone into the same category and try and ‘fix’ them in the same way, but that doesn’t work. Young people are not stupid, we have the capability to think for ourselves. It’s obviously (the doctors’) responsibility to make sure everything is right, but at the centre of it, the young people need to come first.”