‘To see concrete change would be momentous’: what young people want from mental health services in Scotland

Broken doll - Image credit: stock image

In 2016, the Scottish Youth Parliament (SYP) chose young people’s mental health as its campaign of the year, culminating in a report, ‘Our generation’s epidemic’, setting out its calls for change.

These included providing better information about youth mental health services in schools, colleges, universities, GPs surgeries and hospitals.

It also called for Education Scotland to develop a mental health standard for schools, for a review of the provision of school counsellors, and of CAMHS (child and adolescent mental health services), and for the Scottish Government’s then-forthcoming mental health strategy to have an increased focus on supporting 16-26-year-olds.

The Scottish Government’s mental health strategy of March 2017 addressed many of these themes.

It promises a review of personal and social education (PSE), the role of guidance in schools and counselling services for children and young people, improved mental health training for those who support young people in educational settings, an audit of CAMHS rejected referrals, a digital tool to help young people with eating disorders, and improved care planning for young people transitioning from CAMHS to adult mental health services or leaving the mental health system.

CAMHS waiting times and rejections have repeatedly caused concern. In the latest figures, for the quarter ending December 2017, only 71.1 per cent of children and young people were seen within the 18-week target.

In some health boards, less than half of young people were seen within the four-month target, with Grampian the worst performing.

And around 20 per cent of referrals to CAMHS – in some areas as high as a third – are rejected outright, with little other support available.

A recent SAMH report, ‘Going to be alright?’, on young people’s mental health in Scotland highlighted that long CAMHS waiting times leave young people feeling anxious and that young people would like to see more information about where to get help and more support from non-professionals, as well as a focus on prevention and earlier intervention.

SAMH chief executive Billy Watson told Holyrood: “It seems to us, and it seems to young people and their parents, that the thresholds to actually getting any support are getting higher and that actually some people tell us, ‘I don’t feel ill enough to be able to access support, but actually, I need something’.

“And many of them are receiving nothing. So we need to develop pathways earlier.”

However, he is optimistic. “There is a system that is lacking, so we’re starting from a place where we know there are some problems, but I think it is now a national priority.

“Things are being worked on now that we hope for the future will see significant change.

“Genuinely, I don’t want to overstate this, but the potential to have some breakthrough moments in the next year or two are definitely coming on this agenda.”

SAMH is currently undertaking an audit of CAMHS rejections and this too will be a priority for the new Commission on Youth Mental Health Services.

Set up by the Scottish Government, in conjunction with SAMH and Young Scot, and launched last month as part of the Year of Young   People   2018,   the   22   youth   commissioners,  aged between 14 and 22, will conduct research among their peers on youth mental health services and give their recommendations for improvement to the Scottish Government next year.

While unable to guarantee that the government will implement all the commissioners’ recommendations, Minister for Mental Health Maureen Watt told Holyrood that they “will try and accommodate everything” and “definitely give their recommendations huge consideration”.

The SYP is also still pushing for improvements to mental health provision, including work on a ‘bridging the gap’ project on behalf of the Scottish Government to improve transitions out of children’s and young people’s mental health services and into adult services.

Four MSYPs, Suki Wan, Jamie McDiarmid, Chloe Whyte and Madeleine Brown, who have all themselves experienced mental ill health, told Holyrood about their experiences and priorities.

Whyte, who is also a member of the Commission on Youth Mental Health Services, described trying to get help from CAMHS: “I waited five months and I was rejected.

“And there wasn’t a reason on the rejection letter. It just said, ‘You don’t meet the criteria,’ and that was that. And I didn’t hear from them again.

“So, I thought OK, that’s fine, I can fix myself. But it wasn’t really like that, so I found that by the time I got to my Higher exams, my chronic illnesses came back quite severely and I was left on crutches for a while, which wasn’t too great.

“And I then tried to seek support again, … that was in August, after my Higher exam results, I asked for help and it wasn’t until January that I heard back from CAMHS, and this time they said that because you’re 17, even though you’re autistic – so technically, I’m supposed to be in that ‘bridge the gap’ age – they said that I was to seek adult mental health.”

Jamie McDiarmid specifically asked for the CAMHS referral letter to be sent to him rather than his parents, but it wasn’t.

“My mum ended up getting the letter instead and it was just something that I was really angry about… and when I did get the letter, it was, ‘You’re on a waiting list now. You might hear from us in about eight weeks.’

“And it was at this point when I was like, ‘I’m really not sure if I actually want to go anymore,’ and I remember getting to the point where…they gave me these leaflets … and they said, ‘Right, if you want an appointment now, phone us,’ which I think, looking at that, it’s not the best way to do it, you know, ‘You can phone us for an appointment’.

“And I was just too afraid to actually do it … but now I’m in that process again, but because of my age, I’m now trying to do it in adult mental health services”.

All recount difficulties in talking to their GPs, being taken seriously and accessing treatment when required.

Wan said: “I almost felt as if the doctor was doing a checklist [and] it’s like you’re almost sitting there thinking, ‘I need to convince her that I am depressed. If I do this wrong, she might just think I’m really sad today,’ and that’s a pressure that you really shouldn’t have.”

Having built up courage eventually to go and talk to his GP, McDiarmid felt that the doctor “wasn’t comfortable talking about it” and he was also disturbed by being questioned about whether he had thought about killing himself.

However, the most shocking was the suggestion to one young person, who is now in adult mental health services, that they were perhaps not suicidal enough.

They told Holyrood: “The kind of things that they ask you, literally, if you say that you feel suicidal, they will make you sit and explain all the ways that you would potentially do it, and if you can’t provide them with methods – which I could, luckily – then they say that you’re not serious about it because you haven’t really thought about it.

“And then I have actually had people come up and say, ‘Look, we’re really sorry but we need the bed, so you’re going to have to go.

“’We understand that you’re still maybe a wee bit [ill], but if you really want to commit suicide, you’ll do it regardless of whether you stay here with us or not, it’ll just happen.’

“I’ve genuinely…that has happened.”

McDiarmid and Brown are involved in the ‘bridging the gap’ project, which includes producing a document that can be used by patients and health professionals to facilitate a handover and avoid information being lost in transition and young people having to repeat their story.

Brown says: “For years I’ve been saying there should be this intersection of, like, 18-25, because… in CAMHS… you get a lot of close attentive care, and then … they basically say to you, ‘OK, you’re now an adult, so you sort your own and we’ll occasionally assist, but you have to be really bad, you have to be very, very bad… It’s a complete contrast.”

She adds: “It’s as if they expect you to wake up one day and be like, ‘OK, I’m 18, my mental health has now completely changed and I am now able to cope, even though I couldn’t cope yesterday’, which is completely illogical to me.”

The transition process varies geographically, with some areas setting up a first appointment with adult services and others leaving young to make appointments themselves.

Whyte says there is a similar sense of having to fend for those rejected by CAMHS. “It’s quite similar to the transition process, where at the moment there isn’t anything.

“You basically receive a letter saying you aren’t going to CAMHS and people are left to sort themselves out, that’s a lot of feedback that we’ve heard.”

The MSYPs want better information for those who are ‘rejected’, as well as an alternative to that term, but waiting times also remain a key issue.

“Above all else, people always say ‘CAMHS waiting times’,” says Whyte. “I’ve heard in the youth commission and I’ve heard it when consulting for the youth parliament.

“Emergency appointments, at the moment, take at least a month or two months. So normal appointments, you’re looking at four months for Forth Valley CAMHS in particular. It’s quite serious.”

They also want better support in educational institutions in terms of early intervention and support for those who don’t qualify for CAMHS.

This includes high-quality mental health resources across schools and further and higher education, and mental health training for education professionals, allowing pupils more choice about who they talk to. 

Brown says: “Having that specific person [the guidance teacher] being the only contact that you’re told that you have to go to … can be quite intimidating, especially if the person hasn’t really spoken to you or [you have] had a negative experience, for whatever reason, with that particular teacher.

“There’s often another teacher in the school in another department that they, for whatever reason, might have bonded with more… so it’s about if we had a unified standard of mental health training, not necessarily to the same extent that guidance teachers have, but even foundation, basics, it would mean that the students were free to go to any teacher and talk, as opposed to feeling forced into a corner and being told, ‘This is the only person you can talk to about this’.”

When asked what one thing she would like to change, Wan says: “PSHE! We’ve been banging on about PSHE and reforming it for ages and … to see something concrete change about the way that we approach mental health and teaching mental health to young people would be momentous.”

Brown says: “I think that [a] problem with the mental health system and the way it is just now is that we are waiting until people are, literally, coming to the point where they’re saying, for example, if you’re feeling suicidal, you literally have to go up and say, ‘I’m going to do this unless I get admitted now’.

“It’s not about prevention it’s about ‘Oh, we’ll deal with the problem after it’s already occurred’, which to me is contradictory.

“We should be focusing on tackling the problem when it’s at its earlier stages to try and prevent it getting worse, or when it does get worse, you’re equipped to cope with that rather than waiting for people to come and tell us, ‘If something doesn’t happen now, then I’m not going to be here’.

“That’s not the position we want to put ourselves in.”

Good practice: Wallace High School

Wallace High School in Stirling is leading on mental health good practice in schools. Pam Steel, the school’s lead for mental health, was motivated by personal experience of poor mental health and a lack of support as a child to develop the programme around two and a half years ago.

She took a whole-school approach, beginning with assemblies and a week of mental health-related activities to reduce stigma.

Steel explains: “We sent it out as a big blanket over the entire school. I didn’t want us to start teaching it in lessons, I needed it to be open, out there, everybody saw it, everybody spoke about it, so that that permission was granted straight away and the stigma was tackled very quickly.

“Since obviously trying to break the stigma, which I think we certainly have done within Wallace High, we now deliver mental health lessons as well, so we’re backing it up with information about what mental health is, how you look after your mental health, spotting it in someone else, supporting someone else and we do that from S1 to S6.

“So we started much more whole school and … we’re now backing that up in the last year with all the theory work behind it and actual discussions in classes.”

Around 26 staff have been trained in mental health first aid by the charity SeeMe. They wear red lanyards to identify them and their photographs are displayed around the school so that pupils know who they are.

This allows pupils to choose the teacher they feel most comfortable talking to.

Even staff who have not completed the mental health first aid course have had training in what do if someone comes to them with an issue and there is a clear protocol for what will happen displayed in every classroom in the school.

There are also mental health champions among the pupils, and next year they will be trained to provide a peer support service as mental health first aiders, so if a pupil doesn’t want to talk to a staff member, there are young people trained to support them.

Wallace High now plans to share its work with other schools at a ‘mini convention’ before the summer so others can benefit from their resources and don’t have to develop their own from scratch.

Good practice: Miricyl

Notable disparities exist between research spend on mental ill-health compared with physical illnesses and Alex Conway is aiming to tackle this anomaly.

He set up Edinburgh-based charity Miricyl (Mental Illness Research in Children and Young Lives) last year to fundraise for academic research into young people’s mental health, and he aims to bring academics together to work in this area.

Conway notes that research into cancer as a proportion of NHS spend on treatment averages around 10 per cent, whereas research spend on mental illness as a proportion of treatment costs is about three per cent, with even less dedicated specifically to child and youth mental health, despite around 75 per cent of mental illnesses starting before the age of 18.

Conway says: “Our vision is for a world free from mental illness and the stigma attached.

“We aim to fund research and campaign for infants, children, young people and their families affected by mental illness.

“Taking the amount of charitable funding for cancer and a World Health Organisation measure for the impact of mental health on young people, the UK should be funding over £100 million of charitably funded research into children and young people’s mental health.

“Currently, even including government research, it is less than half this.”