Yesterday I wrote about Kesia Leatherbarrow, a teenager from Lancashire who took her own life after being detained in a police cell for more than two days. Kesia, 17, suffered serious mental distress while she was locked away, pulling clumps of her hair and banging her head against concrete cell walls.
Kesia’s pain began long before she came into contact with the police. When she showed signs of mental illness in early adolescence there was little healthcare available for her.
Kesia’s mother Martina and her husband Matt tried repeatedly to get help, but they were turned away by local health providers. “The scary part is we are two professional people,” says Martina, who is a senior secondary school teacher. “We know where you go to get help. I dread to think how somebody will be treated if they didn’t know.”
What happened to Kesia happens to children and teenagers across England and Wales. Treatment or counselling for children suffering a mental illness is hard to come by. NHS spending on child and adolescent mental health services in England has fallen by more than 6 per cent in real terms since 2010. Because of bed shortages, when mentally ill children do get help it might be hundreds of miles from home.
Mental health services in general are hugely underfunded taking up just 13 per cent of the national health budget. How much of that 13 per cent goes towards treating children?
Less than half of it.
In the past five years the skeletal service provision has been cut even further. Is it possible that things could become even worse for children with mental health needs?
Long hours, heavy workload
Sarah (not her real name) is a social worker for a London-based youth offending service. The hours are long and her workload heavy. Many of the children Sarah works with have been refused help in the past, their needs too complex for local mental health services. This just isn’t good enough, she says. “Help needs to be offered early to prevent problems escalating and that help needs to be holistic and flexible to the needs of individual young people.”
One reason it is so difficult to reach young people before their mental health problems develop into serious illnesses or addictions is the current structure of care. A structure that is all about clinical treatment and diagnosis, not prevention.
Sarah argues that for change to happen, the ways of working need to change. “Mental health workers need to be able to go out into the community, to work creatively and alongside other agencies to meet the needs of people whose lives may be chaotic and who may be facing multiple difficulties. There are a number of organisations offering ‘street based’ mental health outreach services of this kind, who do some excellent work, but these are too few and chronically under-resourced.”
Again, a question of resources. To improve mental health services for children, where will the money come from? With central government devolving more of its powers, could local authorities step in?
Lately the charity YoungMinds asked local authorities in England how much they spent on child and adolescent mental health services between 2010 and 2013. Of those asked, 51 authorities replied. Two thirds had slashed their budgets, one – Derby City Council — by 41 per cent. And it’s not as if the budgets were generous to start with.
YoungMinds asked more questions. They discovered that 75 per cent of NHS mental health trusts froze or cut their budgets in 2013/14; 67 per cent of healthcare care commissioning groups froze or cut their budgets between 2013/14 and 2014/15, and 1 in 5 local authorities either froze or cut their child and adolescent mental health care budgets every of year since 2010.
In a time of limited spending on public services, the mental health of children is far from a priority. And yet, the wider consequences, though delayed, could be costly, both for the public purse and to the lives of their families.
According to the Chief Medical Officer, “Some 50% of adult mental illness (excluding dementia) starts before age 15 and 75% by age 18.”
Good care for children and young adults might prevent decades of mental illness, and the pain, familial stress, and economic cost that come with it.
Kesia Leatherbarrow and her mother (All rights reserved)
When money is spent on treating mentally ill children where does it go? And why is it so difficult for families like Kesia’s to find it?
Healthcare for children and adolescents is split into four tiers which can include community-based services and acute or specialist care within an NHS hospital. Each tier, or a particular service provided within that tier, is commissioned and delivered by a distinct provider.
Services vary across the country; in some places early intervention might be delivered by the council. Education authorities could deliver early intervention programmes too (in fact much of the Coalition government’s reform of the children’s mental health sector was about better support in schools; in February 2015 the education secretary pledged £8.5m for early intervention projects).
Then there’s the youth offending teams and children’s social services, also providers. And last year NHS England took over the provision of specialist and crisis care for children.
The problem is, this means the quality of treatment children receive is dependent on where they live, as documented recently by Kids in Crisis, a Channel 4 Dispatches investigation. For example Dispatches interviewed the family of bright and smart 13-year-old Oli, who has autism and sometimes voices suicidal thoughts. There are no in-patient psychiatric beds in Cornwall where they live and they worry that travelling hundreds of miles for treatment will make him worse.
In some places in England and Wales you can get mental health care for children up to the age of 16, while adult services in the same area begin at 18. That leaves children aged 16 to 18 in that area with little or no mental health support.
And it’s precisely at this point that young people are most likely to need help, particularly where there’s been a lack of early intervention services (predominantly funded by financially squeezed local authorities).
So, you have a group children, who, because of a chronically underfunded service, won’t have received much support before 16, don’t qualify for help when they aged 16, 17, 18. Treatable health needs worsen, then they’re shunted straight into adult care.
Or they re-surface in other services ill-equipped to help mental health patients. It might be Accident & Emergency or, as with Kesia, the police.
On 29 November 2014 Assistant Chief Constable Paul Netherton tweeted:
We have a 16yr old girl suffering from mental health issues held in police custody. There are no beds available in the uk! #unacceptable— ACC Paul Netherton (@ACC_Operations) November 29, 2014
Too often, instead of getting treatment, young people are dealt with punitively through the courts, and locked up. The Prison Reform Trust’s detailed analysis of 300 randomly selected children in custody found that 20 per cent of them had self-harmed and 17 per cent had a formal diagnosis of emotional or mental disorder. The research findings were published as Punishing Disadvantage in 2010 and cited by Carolyne Willow in Children Behind Bars. “Our prisons are filled with the poorest, most disadvantaged children who often have considerable mental health and learning difficulties,” Willow wrote.
Mental health services for adolescents are provided by many different companies, institutions and hospitals. One result is that it is nearly impossible to hold accountable a particular provider failing in its duty to young people. Collectively these different services have become so impoverished that their defining culture is to turn people away because there simply aren’t the resources to cater for everyone or carry out preventative work.
Many such young people, sometimes fresh from A&E, turn up on Dr Simon Newitt’s doorstep. He runs Off the Record, a youth mental health charity in Bristol.
Five years ago the charity saw around 150 young people a year, these days it's closer to 1,500 and even then there can be long waits for some kinds of support like counselling.
“There is so much unmet need — much of it is driven by wider social and economic inequalities — that those most in need of early help are also those least likely to seek it out,” says Newitt, who has worked in frontline mental health services for both the NHS and third sector for over ten years.
Off the Record is a self-referral service that offers counselling and therapy for children across Bristol and South Gloucestershire. Its ethos is, never turn anyone away.
Newitt (pictured left) says: “There is an increasingly large number of young people who need something more than light touch early intervention services like ours, but who don’t meet the criteria for more specialist services.
“They bounce around in the gap between early intervention and specialist help, before maybe reaching a crisis point and ending up somewhere like A&E. They’ll get assessed at that point but they still won't get ongoing support unless they are assessed as having a mental illness of some kind.”
Off the Record recently teamed up with its local NHS provider to work on a pilot project to try and fill in these gaps. Newitt says, “Really it shouldn’t take admission to hospital before the right kind of support is available.”
Cat Papastavrou, a mental health specialist from Avon and Wiltshire Mental Health Partnership, works on the new project as a youth transition worker helping 16 to 25 year olds access adult services. The pilot project is starting with three key workers from Avon and Wiltshire’s mental health team. The workers are based in community and outreach mental health groups, and help young people navigate services.
Papastavrou serves people living in South Bristol. Some of the wards here fall into the most deprived 10 per cent in England. In places such as Bishopsworth, Whitchurch Park and Hartcliffe, for example, the proportion of children living in poverty is 30 per cent, 39 per cent and 41 per cent — compared to an average of 24 per cent for the rest of Bristol (2012 figures).
Government cuts to a range of welfare benefits for young people is an added pressure for Papastavrou’s clients. Take the scrapping of housing benefit for 18 to 22 year olds. “The people I work with – a lot of them are looked after children and a lot of them have complex relationships with their family and there is a lot of difficulty in that. Actually being able to get your own place and have a space separate from that is such an important thing in terms of mental health recovery. It’s going to make the work I do much more difficult,” she says.
Many of Papastavrou’s young clients end up missing school because of their illness, or, like Kesia, have been excluded, and they believe that this dent in their education destroys all chance of them finding a job.
“It shocks me,” Papastavrou says. “At 17 they feel their life is hopeless. A lot of it is based on the fact that they feel they have messed up. Not being able to cope at school and they’ve messed up their future in a very real way.”
Papastavrou, who has also worked in drug and alcohol services in the criminal justice sector, thinks this is part of the current political narrative sold to support cuts to welfare benefits. “You just have to work very hard and you will be ok. There is a cultural narrative about people who are deliberately on benefits, they don’t deserve benefits and it’s their own fault and they should work harder. That narrative – if you are on benefits you are a failure — is really damaging.
“What do you say to someone who suffers from really bad anxiety and drops out of school and actually can’t, at that point in time, really cope with the situation they’re in – they are just trying to get through the day?”
What is to be done?
There are more children and young people experiencing mental illness than ever before and the reasons why aren’t clear. In a paper published in the British Journal of Psychiatry Professor Swaran P Singh says: “It’s a paradox that although the treatment for mental health disorders in young people have improved substantially in the past two decades, health system responses to young people with mental disorders have been inadequate.”
It is not all bad. Efforts are being made to improve children’s mental health services. Earlier this year Birmingham and Solihull Mental Health NHS Foundation Trust and Barnardo’s put together a proposal to deliver services for children and teens in Birmingham right up to the age of 25. Similar services exist in Norwich and London.
Even amid plans to cut spending, the coalition government of 2010 to 2015 promised to give mental health “parity of esteem” with the billions invested into physical health. Better services for children and young people formed a key part of this pledge. In five years, the coalition published several policy plans including better access to talking therapies for young people, funding for beds on crisis wards, waiting time targets, better mental health support within schools and a special taskforce created to investigate children’s access to mental health services.
That taskforce published a list of ‘aspirations’ for the government to meet by 2020. They include tackling stigma, improving access, integrating services and improving care for children in crisis.
Norman Lamb, the Liberal Democrat MP and at the time minister for care, said at a parliamentary select committee last year: “Is it really rational that 6 per cent of the mental health budget is applied to children and young people when we know that a very significant proportion of mental health problems start in the teenager years? I think there is overall a funding issue and I will, for as long as I have this job, fight for a better deal for mental health.”
Lamb is no longer in the job. A new Conservative government has already revealed plans for continued austerity which include cuts to local authority budgets. The financial implications of the government taking away nearly all benefits for young people will be devastating for vulnerable children in mental distress without supportive family networks. The promises made by the last government so far mean little to overworked and stressed mental health workers on the ground. Even where improvements are being made there is a fear that these will stall or be reversed because of funding.
If funding continues to fall short of the government’s promises, only severely affected young people will be able to access mental health care.
For now, the services survive because of committed staff who “are actually really good at what they do and who care, and are trying to the best that they can”, says Papastavrou. “But the structure of commissioning and the structure of services almost gets in the way. Where you are no longer commissioned to work with someone and then you have to pass them on, that’s really difficult. There needs to be a rethink and a stronger sense of a youth service. Is there the political will to do that?”
Read part one: Squandered lives: Why is it so hard for young people to find decent mental health care?