18 July 2019

Tortoise Case File • Mental Health

‘I’m frightened I’ll lose my daughter’

Mental health services are stretched, leaving children’s conditions to worsen as families wait for care

By Lucy McDonald

Sienna Lacey was a sweet girl with a timid, trusting smile and a slight reluctance to hold a grown-up’s gaze. She was popular and always asked to birthday parties and play dates. This was partly because she was always among the first to know who to watch on YouTube or how to make the best slime.

She grew up in Chiswick, a smart London suburb, and went to the same primary school as her two older sisters. But after the death of her beloved great-grandmother Mary when she was seven, things went wrong for Sienna. She started worrying about everything and became withdrawn and sad.

One day Sienna drew a gravestone with her name on it. Her mother Emma says: “She told me she wishes she was there and pointed at the grave. Soon after that she started hurting herself. She told a teacher, ‘I want to grab a knife and kill myself’.”

A therapist helped Sienna articulate her thoughts and her inner-world was a dark, terrifying place. Emma says: “She thought a man in an orange suit was after her. She heard voices and saw things and became fixated on cleaning, because if she didn’t something bad would happen.” While her peers prepared for class assemblies Sienna was increasingly off school and referred to Hounslow Child and Adolescent Mental Health Services (CAMHS). She was quickly seen, and eventually diagnosed with autism.

Her family were close and she lived with her mum, a hairdresser, and dad, Max, a civil servant, and her 18-year-old sister Ava. Her other sister, Nico, 26, is married and lived nearby.

In March 2018, Sienna’s health deteriorated and one afternoon, according to her mum, she had a five-hour “meltdown” and grabbed a carving knife from the kitchen drawer and threatened to kill herself. Emma says, “She was uncontrollable. I was scared if I got too close she’d have an accident and who knows what’d have happened. She was holding this big knife near her chest and saying ‘I will put it in me.’”

At this point, her parents expected the situation’s gravity to be recognised, but no proper support came. Emma stopped working to look after Sienna. Her relationship with Max became strained. Sienna was sleeping in their bed, could not be left alone, and anything potentially dangerous had to be locked away in case Sienna tried to hurt herself. The family was living on eggshells, waiting for a disaster.

They didn’t have to wait long. One day, Sienna deliberately gave herself two hard blows on the head. Emma said: “She started screaming ‘My head, my head!’ We walked to the hospital as it was around the corner. I was so scared because I knew she wanted to throw herself under a car. She didn’t want to live.”

Sienna stayed in hospital for two-and-a-half weeks on a general children’s ward with limited psychiatric or therapeutic help and surrounded by other children, despite being in constant distress and plagued by auditory and visual hallucinations. Emma says, “Her eyes were glazed, she was hearing voices in her head – two men arguing telling her, ‘You’re hopeless. You’re worthless. No one likes you.’ She kept banging her head and was uncontrollable. We had a lot of red emergency button presses. She needed proper psychiatric help that a normal hospital couldn’t do. I’d call CAMHS and they’d say, ‘Is she safe? Can you keep her safe?’ Sienna was saying she wasn’t safe and that she’d kill herself, but still we weren’t getting proper help. It made me wonder how bad you had to be.”

Without specialist attention, Sienna deteriorated, but there were no available child mental health beds in London. Finally, after 16 days, one became free at Acorn Lodge, a unit in the world’s oldest psychiatric hospital Bethlem Royal in south-east London, 17 miles away. Emma says, “They’re my angels. They saved my child.”

The average stay at Acorn Lodge is four months, but Sienna stayed for nine. Still only 10 years old and at primary school, her diagnoses included autism, OCD, depression, anxiety, auditory and visual hallucinations, selective mutism and self-harm.

Emma says, “No mum wants their child away from them, but Sienna told me ‘Mum, I am not safe from myself at home. My brain is not normal. I’m floating away.’ At the Acorn Lodge, they treated her with respect and knowledge. At night someone sat outside her room so she could sleep without worrying. She was put on Prozac, given weekly blood tests, psychiatric help and attended school. Sienna felt safe once more.”

Emma with her daughter Sienna

Sienna’s family cannot understand why she reached rock bottom before the right help came. West London Mental Health Services – who look after Hounslow CAMHS – chose not to comment, but sadly Sienna’s story is not unusual, and nationally children’s mental health provision is agreed by politicians of all stripes to be under-resourced and over-stretched. Despite recent cash injections, funding cuts and rising demand have been perilous. Sienna’s story reflects the national picture of a system in crisis.

North Norfolk Liberal Democrat MP, former health minister, Sir Norman Lamb is full of passion, knowledge and righteous anger when he talks about the disparity between mental and physical health. He believes long waiting lists and a “too little, too late” approach causes devastating consequences for children like Sienna. He says, “There’s a treatment jam and families are waiting far too long for anything to happen and too often awful things do happen. The system’s broken and needs fundamentally redesigning. It’s completely unbalanced and dysfunctional.”

An NHS report published in November last year is the latest research drawing attention to the poor state of children’s mental health. The study of 9,000 children showed an increase in mental disorders in five to 15 year olds, rising from 9.7 per cent in 1999 to 11.2 per cent in 2017. Girls aged 17 to 19 were most at risk, with a quarter reporting mental health problems.

In 2018, a Care Quality Commission (CQC) report said: “We found many children and young people experiencing mental health problems don’t get the kind of care they deserve. The system is complicated, with no easy or clear way to get help or support.”

It spoke of caring, high-quality staff, whose work was hampered by increased demand and lack of support. In October 2018, the prime minister, Theresa May, appointed the country’s first minister for suicide prevention, thought to be the first in the world.

Are waiting times a key problem? A 2016 report by the charity Young Minds found that three-quarters of young people referred to NHS mental health services waited so long that their condition deteriorated by the time they got to a doctor. Whilst the number of referrals to child and adolescent mental health services in England increased by a quarter over the past five years, one in four cases are rejected or deemed inappropriate for treatment.

Something has clearly gone wrong. The reasons for the rise in mental illness are complex – academic pressure, social media, family stress, cuts to children’s services and better diagnoses all contribute – but the wait for treatment and under-funding of services is incomprehensible. Extensive research shows a correlation between childhood mental illness and trauma and adult physical and mental illness. Economically it makes sense to direct money and research at children and young people. However, less than 1 per cent of the total NHS budget goes on CAMHS, whilst a 2016 report by health charity The Kings Fund estimates four in ten mental health trusts faced year-on-year budget cuts since 2011.

Last year, the government announced an extra £20bn a year for the NHS by 2023 – earmarking a tenth for mental health. An NHS spokesperson said: “The fact is funding for children and young people’s mental health services will grow faster than both overall NHS funding and total mental health spending, so that by 2023/24 an extra 345,000 will get the help they need, every year.”

Sir Norman Lamb fears there is a “smoke and mirrors” effect at play, where funding does not reach the places intended – he says historically there is little accountability, with mental health budgets often consumed by higher-profile projects or other services. If resources were front-loaded in the early years of children’s lives, before emerging problems become insurmountable, the outcome for vulnerable children could be different.

A bedroom prepared for a new in patient at the NHS Lavender Walk Adolescent Psychiatric Unit in South Kensington, London

Analysis by charity YoungMinds in 2017/18 suggests four in ten Clinical Commissioning Groups – the bodies responsible for local health services – increased their CAMHS budgets by less than the extra money allocated. In some areas, extra funds were spent on other priorities.

This does not surprise Sir Norman Lamb, who recalls former deputy prime minister Nick Clegg announcing an extra £250m-a-year for five years for child mental health in 2015. So far, Lamb believes only £140m has been allocated. He says the funding landscape is a “wild west”. “We don’t know how money is spent – there’s no data analysed or collected and no clear national commitment to applying evidence of what works and what’s effective,” he said. This is a view backed by a National Audit Office 2018 report that highlighted “significant data weaknesses” around child and adolescent mental health activity and spending.

Speaking to NHS and government civil servants, it is clear Whitehall feels under attack over child mental health. NHS England points towards an online spreadsheet that collates data across mental health services as a sign of transparency, but it is complex to understand. Elsewhere there are clear gaps in national data collection. A Freedom of Information request by Tortoise to NHS England on the number and type of serious incidents in CAMHS – for example suicide, abuse, self-harm – showed figures are not collated nationally, if at all. We have contacted individual mental health trusts for this important data to create a national picture of the problems children in in-patient care face.

Sir Norman says, “The fact that NHS England is unable to tell us how many serious incidents are going on in CAMHS is very disappointing. If we don’t know where the problems are in CAMHS services, how are we going to work out how to fix them? The unfortunate reality of a lack of data is that we frequently find out what’s going wrong once it’s too late – and have to rely on the bravery of whistleblowers who risk their careers to inform the public of real scandals that are going on.”

The Government’s Department of Health and Social Care talks about “regulatory action” for CCGs who don’t spend enough, but in the same breath says crisis care is available around-the-clock through NHS 111 – the non-emergency medical helpline – as evidence of its mental health commitment. A Government spokesperson says: “Mental health is a key priority for this Government. We expect CCGs to increase investment in mental health services in line with the Mental Health Investment Standard and if this is not done, NHS England will consider appropriate action.”

Sir Norman’s son, Archie, developed OCD as a teenager, so he knows the system as politician and parent. He thinks children receive the wrong type of treatment. “The average length of stay in England in a child psychiatric unit is 72 days,” He said. “In Australia, it’s 10 days, because there’s earlier community intervention. We’ve a model where an enormous amount is spent on a small number of young people. In-patient care damages them often.”

A 2019 Children’s Commissioner report showed children’s medium secure psychiatric hospitals cost £588,015 per child per year. Lamb believes resources should shift from long stay institutional care to early intervention and intensive community care.

An NHS spokesperson says: “The NHS Long Term Plan is actually ramping up early support in the community, schools and colleges and testing new four-week waiting times – while more children and young people are already being seen and 22 per cent more staff in services than five years ago.”

One initiative is placing mental health workers in a quarter of schools over the next four years. Dr Marc Bush, Policy Director at YoungMinds, says this is not enough. “It’s good news that Mental Health Support Teams are being rolled out across a quarter of the country by 2023, but we need to ensure this support will be available across the country.”

England has one of the lowest number of inpatient beds – 9.4 per 100,000, compared to Germany’s 64 – in the EU, according to a recent study. This shortage means children like Sienna are admitted to children and adult wards.

NHS figures show that, in a three-month period during 2017-18, 57 mentally ill children stayed on adult wards, despite a legal duty to prevent this under the 2007 Mental Health Act.

Sarah Hughes, chief executive of charity the Centre for Mental Health, says a more nuanced strategy to avoid acute admissions is needed than simply adding extra beds. She says, “Whilst additional beds are no doubt needed within the system for children and young people, we must also note with caution that this is only part of the overall solution. For a child to have the best chance we must invest in prevention, community services, family support and a whole range of things that would address health inequalities.”

Child psychotherapist Julie Lynn-Evans has helped families find private treatment abroad due to the UK’s bed shortage. Recently she helped the parents of an anorexic teenager find a bed in the Netherlands. This is a sadly well-worn route – along with American and South African clinics – for those who can pay. On parent mental-health forums it is not unusual to hear stories of parents who have remortgaged or sold their homes to fund treatment.

Nurses work in the nurses station of the NHS Lavender Walk Adolescent Psychiatric Unit

Lavender Walk is a new NHS teenage psychiatric unit attached to Chelsea and Westminster hospital in west London. It has 12 beds and there is a school, a gym, table football, a PlayStation, a library, a music room with ukulele, guitars and piano, a sensory room and a visiting therapy dog called Tilly.

Patients are allowed visitors, phones and visits to local museums. Most children have attempted suicide and common diagnoses include psychosis (linked to smoking the powerful cannabis strain skunk); emotional dysregulation; complex trauma (often because of sexual abuse); depression; and anxiety.

The resident psychiatrist Dr Navin Chandra says self-harm is a growing problem. “Over the past five years on average, I’d say one in 10 children would self-harm. That’s almost doubled. Typically we see more girls, but we’re now seeing more boys with anxiety and emotional disturbances. The government’s talking about more early services and interventions – is that enough? I don’t think so.”

Dr Navin Chandra at the NHS Lavender Walk Adolescent Psychiatric Unit

Lavender Walk prides itself on quick and effective treatment with an emphasis on therapy. The manager, Amanda Lanney, says, “In February the average patient stay was four weeks. Research shows if people are kept in for a long time their mental health deteriorates. We don’t want anyone in longer than is needed. We had one teenager here for two days. We’ve had no re-admissions since we’ve been open.” It is not all plain sailing, however, there were two recent incidents of attempted self-harm.

Anti-depressant use in children rose by 15 per cent in England from 2015 to 2018, with the rise linked to long waiting lists and increased need, but Dr Chandra believes drugs should not be prescribed for the sake of doing something. “I’d rather not use medication, if it can be avoided. Don’t get me wrong, it has a place. When someone’s depressed or psychotic it does more harm when not treated, but my philosophy is, don’t rush. We want these young people to leave healed and not come back again.”

When children in psychiatric units become overwhelmed or out-of-control, staff are allowed to physically restrain them as a last resort. A 2019 report by the Children’s Commissioner into autistic children in care revealed that, in a single month last year, 75 children were physically restrained a total of 820 times – an average of 11 times each. Inspectors spoke about restraint techniques being used “as almost a matter of routine”.

Lavender Walk is clearly doing things differently – there have only been two physical restraints in six months. In her nine months at Acorn Lodge, her mum says Sienna was restrained more than 10 times. Emma understands this was necessary when her daughter became a danger to herself or others. She says, “It wasn’t all dandy. Sienna ended up dozens of times in a padded room – for time out. Sometimes she tried to kick the doors down and so was restrained by staff, 10 times or more.”

Lights comfort in-patients experiencing trauma and difficulties, in the sensory room of the NHS Lavender Walk Adolescent Psychiatric Unit

Despite the trauma of separation and living with other very ill children, Sienna did well at Acorn Lodge. Her suicidal thoughts lessened, she felt happier and able to cope.

She is now at a school for autistic children in Hampshire. It is 60 miles from home – Emma and Max have sadly separated – so Monday to Friday she lives in a nearby residential home. After the trauma of her illness, Sienna deserves a happy ending but again she is self-harming and suicidal. Her mum feels lost, once more, and as if no-one can help.

Emma says: “The council says the school’s taking care of all Sienna’s needs, but they’re not. There’s no suitable talk therapy or psychiatric help. It’s the weekends I fear. I feel abandoned. We’ve been left with a child who could potentially kill herself and we’ve fallen through the cracks.”

A communal blackboard is covered in writing and drawings made by in-patients at the NHS Lavender Walk Adolescent Psychiatric Unit

Emma has repeatedly asked her new CAMHS team in Hampshire for support, but a “significant and sustained increase in demand” means a two-month wait to review her case. A spokesperson for Sussex Partnership NHS says, “Care plans are sometimes required to be reviewed at longer intervals, following a discussion in the team, and are assessed on the level of risk and need of the individual.”

It is hard to imagine a child more at risk. Sienna is 12 this year and has been ill for nearly half her life. Whilst her family welcomes the government’s pledge for more money, Sienna needs help now. The struggle is far from over. Emma says, “I don’t sleep and I’m worried all the time. On tenterhooks. We never know what’ll happen. I say I need help but no one listens. I’m frightened I’ll lose my daughter to suicide.”

* Family names have been changed in this story to prevent identification

If you are upset by anything in this article, in the UK, Samaritans can be contacted any time on 116 123 or email jo@samaritans.org. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255.

*This article was amended on 18 July to correctly attribute a report on restraint of autistic children to the Children’s Commissioner

Photographs by Andrew Testa and Mary Turner for Tortoise Media

Further reading

This annual assessment by the Care Quality Commission looks at how vulnerable children are failed by the care system

2017 NHS Study into 9,000 children’s mental health. Looks at mental health in 2-4 year olds for the first time and transition into adult care

PANS/PANDAS friendly charity website for information on the inflammatory neuro-psychiatric disorders

Extensive EU project on child mental health across 28 countries with league tables

Young Minds charity report – based on Freedom of Information requests – into mental health funding

The Reason I Jump Naoki Higashida wrote this book when he was aged 13 and provides insight into the behaviour of autistic children