UK
“Our child is articulate, funny, clever, musical. But she’s unrecognisable to us here today,” says Sally, with pain in her voice as she talks about her 15-year-old daughter Ruth. “We’re worried that all that potential – for Ruth to live a happy life – could go unused,” adds her husband, Bill.
The couple are talking after a tense, fraught and frustratingly unproductive session of family therapy with their daughter and therapist Frank Aust at Ruth’s temporary home, the Coborn Centre for Adolescent Mental Health in Newham, east London. During the hour-long meeting Ruth, withdrawn and sometimes angry, avoided her parents’ gaze, did not embrace or even touch them and at one point had to be persuaded not to storm out.
The encounter has left everyone emotionally drained. The psychiatrist and three therapists who observed it through a two-way mirror are alarmed, about Ruth’s mental wellbeing – she came close to suicide only a few months ago – and also Sally and Bill’s ability to cope when their daughter is discharged from the Coborn.
But in one sense the family are lucky; the Coborn is one of the best centres of its type. As Britain grapples with an unprecedented epidemic of mental illness among its young people, a place in a local facility like this is becoming increasingly hard to find.
The Coborn’s 130 staff are at the frontline of the NHS’s attempts to cope with the epidemic of mental ill health among Britain’s young people. The unit’s 28 patients, aged between 12 and 18, are some of the country’s sickest children. Many have bipolar affective disorder, schizophrenia or first episode psychosis. Many have missed long periods of schooling, been in trouble with the police or experienced real difficulty in what should be the key relationships in their life, with family and peers.
It is run by the East London NHS foundation trust (ELFT), one of only two of the NHS’s 54 specialist mental health trusts in England to have been rated as providing outstanding care.
“We work at the extreme end of mental health problems,” says Dr Rafik Refaat, the most senior consultant psychiatrist at the unit, who set up the service 18 years ago. “We see the most unwell children and young people. Between 65% and 80% have previously had serious, significant incidents of [attempted] suicide or had repeated episodes of self-harm.”
The unit recently admitted a 17-year-old girl who had tried to kill herself five times in the previous fortnight by taking an overdose. “That’s the group we look after,” Refaat adds. Often a mental health crisis of some sort leads to the young person being admitted as an emergency to the Coborn. The average stay is two months. But some patients are so severely unwell that it takes 18 months of treatment before they are able to rejoin their families and go back to school.
Dr Sophia Ulhaq, one of the unit’s other two consultant psychiatrists, , adds: “These are young people who are suffering with a mental health disorder that’s bringing them immense distress and they are suffering significant psychological pain.” Every patient represents a different but complex challenge.
Refaat explains that patients often do not understand why they feel low, why their mood fluctuates alarmingly. Their precarious state can lead to them being exposed to dangerous situations, such as criminality, mixing with the wrong crowd, and illegal drugs and alcohol.
The Coborn rarely has a empty bed. Its inpatients come from all over London and south-east England, and sometimes beyond. Its staff include art and drama therapists, teachers, music teachers and a fitness instructor, as well as nurses, psychiatrists, social workers, occupational therapists, psychologists, family therapists and a pharmacist. Not all patients take medication, but they do all receive intensive therapy. “Medication isn’t the answer to everything,” says Kamel Cheradi, the modern matron (senior nurse).
Each room has to be opened by a member of staff. No patient is ever left alone in the shared areas, to minimise the risk of self-harm using communal equipment. There is a wide range of activities on and off-site that often prove therapeutic: trampolining, visits to a city farm or the nearby Olympic park. Some patients go cycling, albeit accompanied lest they try to abscond. A 15ft-high fence circles the Coborn’s garden for the same reason.
Sally and Bill are delighted Ruth is here. Their daughter experienced a rapid decline before she was admitted. “What had been self-harm associated with low self-esteem became active attempts to end her life,” Sally says.
“At primary school Ruth was miserable and didn’t find it easy to make friends and there were bereavements in the family. We thought it would all iron itself out in secondary school, but it didn’t,” says Bill. “With mental health problems in their children, parents often go very suddenly from concern to ‘we need to take action’. Almost always parents leave it too late to recognise signs of anxiety, low mood or self-harm; to appreciate that their child is deteriorating.”
Their frantic search for high-quality help illustrates some of the weaknesses in child and adolescent mental health (CAMHS) services. Jeremy Hunt, the health secretary, described CAMHS as the most inadequate NHS service in 2016. There can be long waits to actually start treatment and some places are many miles from patients’ homes.
“We first saw a GP about Ruth in September 2016 but couldn’t get her first appointment with CAMHS until three months later,” says Bill. That, though, is short compared with the 100-week waits faced by some people, which government research uncovered last year.
“Ruth spent time in another unit in London but also in a hospital 65 miles away and at one point faced being sent to Sheffield, just to get a bed. CAMHS are really stretched, to a point where it’s quite difficult to access care,” Bill says.
“It was like arriving in Shangri-la when Ruth got a place in the psychiatric intensive care unit here back in February. She was lucky. We were desperate that this was the place where her problems would be solved.”
There are about 1,400 CAMHS inpatient beds in England, including 150 that NHS England created in the last two years to create more capacity. Few mental health experts think even those 1,400 are enough.
The number of young people referred to CAMHS shot up 56% between 2012-13 and 2016-17. Those attending A&E in England because of psychiatric problems almost doubled to 22,000 a year between 2011-12 and 2015-16. The last official study of the extent of mental health problems in five- to 16-year-olds, published in 2004, said 10% of that age group had a diagnosable mental health problem. Experts predict an updated version of that report, due in the autumn, will show that the true number is far higher.
Teenage suicides are rising. In 2015 it was the commonest cause of death for boys and girls aged five to 19. The number of under-18s taken into hospital after poisoning or hanging themselves has rocketed over the last decade, especially among girls. The NHS in England is helping more than 250,000 under-18s at any one time try to combat their anxiety, depression, psychosis, eating disorder or other form of mental illness. A quarter of 14-year-old girls are clinically depressed. Every child admitted to a CAMHS inpatient service costs the NHS an average of £64,700.
But currently only a quarter of those in need actually receive NHS care. A mismatch between demand and supply lies behind the delays in getting help many children and young people face. Some are told that, while sick, they are not sick enough to qualify for treatment. The NHS England chief executive, Simon Stevens, has pledged to spend some of the £20bn boost Theresa May recently gave the service on “a major ramp-up of young people’s mental health services”.
About 30% of the Coborn’s patients have bipolar affective disorder. “Sadly,” says Refaat, “this group harbour suicidal thoughts. They feel that life is not worth living.”
A larger number, about 40-60%, may have suffered some form of trauma or been exposed to significant harm. Children suffering trauma may have been raped or abused.
Some Coborn patients have a serious eating disorder. “Some young people weigh less than 60% of their expected body weight. Their weight can fall so low that their health has become physically compromised, for example their heart and kidneys don’t work properly and, in extreme cases, they can end up in cardiac arrest,” says Ulhaq. A few have rotten teeth because repeatedly making themselves vomit has led to acid from their stomach causing serious dental erosion.
The staff’s goal with every patient is recovery, though that is relative, not absolute. Recovery will depend on a range of things, Refaat says, including family situation, follow-up treatment and medication. “Most young people do go back to their education, social network and part- or full-time job, though a few may still struggle with the social domain of life and their identity and stigma,” says Refaat.
“Serious mental ill health in children and young people is really misunderstood by society at large. Society often rejects these young people or stigmatises them as problems. They are challenging to work with, but rewarding too. To help young people who are very vulnerable and very needy is a privilege, and to see them on the road to recovery is the greatest source of satisfaction to me in my job.”
By Denis Campbell
3 July 2018
