Young lives are being ruined and families destroyed as the pleas of desperate parents for mental health treatment are rejected, Dani Garavelli discovers
Marianne is a childcare professional who met Joseph through work so she knew he was profoundly troubled and that looking after him would be a daily struggle. What she was not prepared for were the barriers that would be placed in front of her as she attempted to access the mental health support he so desperately required.
“Right from the beginning, there was a recognition Joseph was in need of some kind of therapeutic intervention, but in order to qualify for help from the Children and Adolescent Mental Health Service, you have to be in a stable placement and no-one wants to accept that a child so young is going to spend an extended period in a care home, so he was turned away.
“When he came to us at the age of nine, we were in it for the long-haul, but again CAMHS refused to see him; they told us he still wasn’t in a stable enough placement and that sometimes working with children who weren’t ready for it could make things worse.”
Marianne, a softly-spoken woman, who clearly loves Joseph, accepts he was often uncooperative; he had violent outbursts and refused to attend speech therapy appointments. But she says she had an affinity with him and he began to open up to her.
“We had a bit of a moment over a hedgehog,” she says. “He had been on the roof throwing stones at us. I said ‘follow me’ and, to my surprise, he did. He looked at this hedgehog and it was the first time I had ever seen him still. There were other times when we were able to see his deep, deep pain. He is a clever, articulate boy who, when feeling safe enough, is able to say: ‘I feel scared.’”
Throughout the time Joseph lived with Marianne and her husband, her approaches to CAMHS were rebuffed; at one stage, an appointment was made and then cancelled after they were offered help by Barnardo’s, which then fell through. Joseph’s outbursts escalated and one day, just under a year ago, after he had lashed out and split her husband’s lip, the fostering agency said enough was enough. “They knew I would never call it, so they called it for me,” says Marianne. Joseph is now in another children’s home. Marianne and her husband take him out once a fortnight and speak to him two or three times a week. Five years after his need for a psychological intervention was first identified, Marianne says, Joseph has still not been accessed by CAMHS.
Joseph is just one of thousands of children in Scotland whose referrals to the specialist service are rejected every year. In the past few weeks, two separate reports – one from Barnardo’s and one from the Scottish Association for Mental Health (SAMH) – have confirmed what users already knew: that CAMHS is failing many of those it is supposed to serve.
Among the many flaws identified were: an inconsistency of provision across the country; a lack of clarity over the threshold required to be accepted for treatment; a lack of alternative services for those who don’t meet the threshold; a failure to communicate adequately with parents; and a sense that young people have to be suicidal before they are taken seriously.
Most critics accept CAMHS workers are doing their best in a system buckling under the weight of demand, but what it means in human terms is many parents being forced to look on helplessly as their children’s mental health problems intensify.
After the publication of the SAMH audit commissioned by the Scottish Government, the new Health Secretary, Jeane Freeman, accepted its 29 recommendations and announced a £5m task force headed by mental health expert, Dr Dame Denise Coia, to overhaul the service. The recent reshuffle also saw the previous mental health minister, Maureen Watt, replaced by Clare Haughey, who is a mental health nurse. However, given that the problem of rejected referrals is long-standing, there are still questions to be asked about the time it has taken for the government to act and the scale of the challenge ahead.
To try to get a handle on the issue, I spoke to parents from across the country and the social spectrum who have experienced difficulties with the existing system; all of them were miserable and worn out, with some harbouring feelings of guilt after their own parenting skills were called into question.
First up was Ros, whose daughter Jayne became anxious and depressed after a succession of bad experiences left her feeling “abandoned, friendless and upset”. Initially, Ros hoped the 14-year-old would bounce back, but when she stopped sleeping, eating or going to school, she contacted her GP.
The GP was sympathetic and referred her to CAMHS, but a week later she telephoned, embarrassed, to say the referral had been rejected as a lack of resources meant they had to prioritise. “I was gobsmacked,” Ros tells me. “I said: ‘Are you telling me she is not mentally ill enough to be seen; that we need to wait until she is more ill than she is now?’ It was terrible to have to go back to my daughter and say: ‘You know that problem that was so awful and we had to struggle to get you to go to the GP – well there’s no help coming’.”
The GP referred Ros to a charity and she was put on a waiting list. In the meantime, her mental health continued to deteriorate; she stopped washing and her school attendance went through the floor. After a second CAMHS referral led to a face-to-face meeting with a psychologist (but no follow-up treatment), Jayne started to self-harm; she saw a different GP, who told Ros the cutting was “superficial”.
“I completely lost the plot,” Ros says. “I mean what did we have to do to get somebody to take her seriously? It was superficial, but as parents we didn’t know what she might go on to do. I would be lying in bed at night, with her in the next room, wondering: ‘Is she OK in there?’”
Ros says the self-harming “moved Jayne up a notch” in priorities for CAMHS, but this made no practical difference because there were no appointments available. In the meantime, she reached the front of the queue at the charity and received 12 counselling sessions. Today, she has stopped self-harming, but is still not properly back at school, with two days out of five seen as a good week.
“If she had a broken leg or cancer you would bang your fist on the table, you would phone your MP, you would phone the local paper,” says Ros, “but nobody is going to put their hand up and say ‘I can’t get help for my mentally ill child’ because there’s so much stigma and you have to think of their privacy. “
Another mother, Jennifer, believes she made life difficult for herself because when her son Patrick was first referred to CAMHS with suspected autism in Primary 7, she was still in denial. A specialist spent time with them both, but seemed happy to accept her view that he was not on the spectrum.
Later, as Patrick’s problems became more pronounced, and Jennifer began to accept that he may indeed have ASD, she could not get herself back into the system in order to obtain a diagnosis.
By then, the social work department were involved. Despite the fact she has a younger daughter with no behavioural problems and had already completed a parenting class, she found her own abilities being called into question.
“That sent my husband and me into the doldrums. We came to believe we must be terrible parents so we said: ‘Social Work, come and tell us what we are doing wrong.’ The idea that it was my fault set me back because it stopped me exploring other avenues.”
Jennifer says she quickly learned saying “No” to anything meant a black mark against her name, so she agreed to attend a class for parents of “difficult” children. Having heard what she was dealing with, one of the facilitators took her aside and said he was sure there was something else going on. He built her confidence back up and gave her the details for the Scottish Centre for Autism, which has agreed to assess Patrick, now 12, independently.
“We have had the most extreme physical violence in our house,” says Jennifer. “We have had the police at our door two or three times, and at the centre of it all is an extremely upset, confused wee boy who can’t understand what is going on. “
The SAMH audit of CAMHS was commissioned as part of the Scottish Government’s mental health strategy, against a backdrop of concern about the growing pressures on the service.
Statistics show the number of referrals to CAMHS has grown by 20 per cent over the past three years, with 33,309 in 2017. The Scottish government has a waiting time target of 18 weeks, so the number of rejected referrals is also rising (to 7,266 in 2017); however the proportion of rejected referrals, one in five, while high, has remained stable since 2016.
If the overall system was working effectively, the fact so many children with mental health issues were unable to access CAMHS might not be an issue; those with, say, mild anxiety or depression might be offered counselling in schools or by charities, leaving CAMHS free to deal with the most complex cases.
Unfortunately, though third sector organisations such as The Spark, which operates in 50 schools across the country, do provide counselling – both the SAMH audit and the Barnardo’s report found an inconsistent and fragmented service in which access to help of any kind is inconsistent and the criteria for treatment unclear.
Having interviewed 363 people in seven health board areas, SAMH found most young people referred to CAMHS had tried to access help elsewhere first and so had their hopes pinned on being accepted for treatment.
The majority of rejected referrals were assessed on the basis of a written report, while face-to-face assessments tended to take place with both the child and parent present throughout, which could make it difficult for both parties to speak freely.
SAMH also interviewed nine GPs, who expressed concerns about the high number of rejections, the lack of clarity on CAMHS criteria, the feeling of being professionally disrespected when referrals were rejected and the lack of alternative services.
“It was quite an emotional project to be involved in. In the end, we shared the frustration and distress of the parents and children at the experience they had,” says SAMH public affairs manager Carolyn Lochhead, who conducted some of the interviews herself. “What we found was that, in most cases, they had been trying to get help for a while, so by the time the CAMHS referral went in, they were at the stage where they felt they needed to be seen right away. That’s why one of our 29 recommendations was that people ought to be able to get help for behavioural and emotional difficulties that aren’t severe enough for CAMHS as it is currently constituted.”
Launching the task force was Freeman’s first act as Scottish Health Secretary. “From a non-professional background, it does look to me as if we are risking waiting until people are at crisis point and that actually there is room to be in earlier, when the initial triggers take place or the signs are beginning to show themselves, and to offer children and young people appropriate support at that point which can prevent the crisis stage being reached,” she tells me. “Of course, Denise and the task force will look with much more knowledge and experience than I have and decide whether they think that is the right approach and, if it is, what it would entail.”
Freeman also believes it should be possible to deliver a consistency of service across all of Scotland’s health boards. “I accept the need for clinical independence and clinicians and others have to be able to exercise their professional judgement, but in many other areas that does not prevent us from having an equity of access and an equity of expectation of standard,” she says. “I see no reason why this should be different. At the end of the day our health boards are the deliverers of government policy and we fund them to do precisely that.”
On holiday in Spain, with her sons, Finlay, eight, and Kerr, three, journalist Kim McAllister believes her more positive experience demonstrates the way a properly joined-up system could work to help children with complex needs .
Finlay was already being treated for epilepsy at the Royal Hospital for Sick Children in Edinburgh when she began to suspect he might also be suffering from ADHD. “I was told the waiting list for a CAMHS diagnosis was 13 months, but I couldn’t wait that long – he was in P2 and his schooling was suffering,” she says.
Fortunately for Kim, Finlay’s consultant paediatric neurologist, Jay Shetty, agreed to ask child and adolescent psychiatrist Dr Robin Berger to meet up with them in his office. Berger confirmed Kim’s suspicions and prescribed medication.
“We tried it for a few weeks and, honestly, the difference was night and day,” Kim says. “It calmed him right down so he could concentrate in class and he was so much happier because his life made so much more sense. He wasn’t bouncing off the walls and he could process things much better.”
Later Berger also diagnosed a learning difficulty; as a result Kim is now able to access the learning disabilities team at CAMHS. “I do feel very lucky, but as the doctors said: ‘This is the way it should be for everyone,’” says Kim. “It’s just trying to get different departments to talk to each other.”
Whatever the task force recommends, it will come too late to spare Barbara, a child-minder and single parent, from years of anguish. Barbara, who contributed to the CAMHS audit, has been trying to secure help for her 13-year-old son David since she noticed a recklessness to his behaviour she thought could be Asperger’s Syndrome at the age of six.
There was a brief period of relative calm in late primary, when a love of music and drama took the edge off his wildness; but his transition to secondary sent him into a tailspin of self-destruction. Today, David smokes, takes drugs, plays truant, and has set fire to the school toilets. The police are frequently at Barbara’s door. “Last summer holidays, he kept running away from home,” she says. “I would go to get him up in the morning and he wouldn’t be in the house. I was living on my nerves and was often too scared to go to bed.” Despite all this, she says, at one point she was accused of “catastrophising” the situation.
Even once David was finally referred to CAMHS in May 2017, the nightmare continued with delays and the first nurse who was working on his case going off on long-term sick leave. Only recently has he been put on the waiting list for an assessment for autism, which will take place in September at the earliest.
Talking to Barbara, whose older son is 18 and holding down a steady job, is like plunging into the darkest corners of your own psyche: you empathise with the terror and powerless she feels at being trapped in a situation she cannot control and that no-one else seems able or willing to help her fix; you feel your stomach turn over as she describes watching a much-loved child turn into a stranger who lashes out at her without provocation. No-one can know for certain if earlier intervention would have made a difference, but she believes it would have been easier to help a six-year-old than a teenage boy whose hormones are kicking in.
“It is hard for me to share all this,” she says, “but I feel I have to for all those parents and children who are going through what I’ve gone through and have no one else to fight for them.”
*Some names have been changed at the request of those interviewed