By Alison Holt
Social Affairs Editor
An autistic girl aged 16 spent nearly seven months in a busy general hospital due to a lack of suitable children’s mental health services in England.
Her local health and care system said it was “very sorry” for how she was treated “when she was most vulnerable”.
Campaigners describe the shortage of appropriate support for people with autism as a human rights crisis.
Directors of council care services are calling for an urgent government review of children’s mental health services.
The teenager, called Molly, spent about 200 days living in a side-room of a children’s ward at the Queen Alexandra Hospital in Portsmouth. It is not a mental health unit.
Experts say a general hospital was not the right place for her, but she had nowhere else to go because of a lack of help in the community.
Warning: Molly’s story contains details that some people may find upsetting
Agency mental health nurses were brought in because she needed constant, three-to-one observations to keep her safe. Her family says security guards were also often stationed outside her room.
Molly’s autism is at the root of the deep anxiety and eating problems that she struggles with.
Like many autistic people, she finds dealing with noise difficult. The clamour of the hospital overloaded her senses and her behaviour sometimes became challenging. She was restrained numerous times.
In the final 10 days she was at the hospital, her family says the children’s ward was closed to other patients because she became so distressed.
A spokesperson for Hampshire and Isle of Wight Integrated Care System (ICS) said it was sorry Molly “did not receive care in an environment better suited to her needs”, adding: “Molly’s safety has always been our priority.”
The National Autistic Society says it is hearing from hundreds of autistic people who cannot get the support they need.
A spokesperson for the Department of Health and Social Care says it recognises “the importance of getting people the right care in the right place”.
This may be one person’s experience, but it tells us so much about how the health and care system is failing too many young people who are struggling.
Molly is a bright, engaging teenager, who loves animals and finds the outdoors calming. She was diagnosed as autistic when she was 10 years old. She is also partially sighted.
For nearly a year, I’ve been speaking to Molly and her parents. Through the many emails, phone calls, video meetings and visits I’ve followed the frustrating fight they’ve faced to try to get Molly the right support.
Molly with her parents Mandy and Richard
When I first sat talking to Molly in the kitchen of her family home last August, she had already spent 90 days on the children’s ward of the general hospital because there was no support available elsewhere.
She had initially been taken there because her weight had fallen dangerously low, but described the loud, bright, busy hospital environment as like “living in hell”.
“It feels like they’re torturing you,” she said. “It’s almost like the hospital room is like a small box, and you’re not allowed to leave it. There are phones going off, alarms, children screaming.”
The three-person restraint team that moved in when she became distressed or if she was refusing to eat “just made things 100 times worse”, she remembered.
In the past four years, Molly has also spent time on four child and adolescent mental health units. Two of the units have since closed after highly critical inspection reports. Her family believes none of the places provided Molly with the therapy or autism support she needed.
Her father Richard said: “There is no long-term strategy. No planning really, other than reacting to crises.”
The Hampshire and Isle of Wight ICS spokesperson said there had been “a significant and rapid rise” in the number of children and young people with complex mental health conditions requiring care and support since the Covid pandemic.
It says across England, the proportion of children aged five to 16 years identified as having a probable mental disorder increased from 10.8% in 2017 to 16% in 2020. In south-east England the proportion is even higher at 17.4%.
When I asked Molly why she wanted to speak to us, she was very clear. She didn’t want others to be treated as she had been treated.
“The system really needs to change,” she said.
Once Molly was back at home after being discharged from the last unit, they hoped she would get intensive support in the community to help with her disordered eating and anxiety.
Her family says this proved patchy, with many changes of staff.
Last October, Molly reached another crisis. Her weight dropped again and she was taken back to the Queen Alexandra Hospital. Her parents asked us to delay telling her story, hoping she would be home soon. Nearly seven months later she was still there.
Her family says she was traumatised by the hospital environment, being frequently restrained and largely isolated from other young people.
“It’s a vicious cycle,” Richard said. “The more distressed she gets, the more her behaviour becomes challenging and then the more intense support they’ve got around her, which is more oppressive and more sensory-overloading.”
Despite the close supervision, she has also harmed herself seriously on several occasions.
“I think we know something is wrong before we even pick up, if the phone rings at night,” said her mother, Mandy.
Mandy, Molly’s mother
They are both exhausted and when I asked how they were coping, Mandy said: “You have to cope, there is no other way.”
In March, Molly’s parents told me that the teams involved in her care seemed to agree she was stuck.
Richard said past experience had shown that “off-the-shelf solutions”, including stays in mental health units, were “very negative for her and completely don’t meet her autistic needs”.
An ICS spokesperson said: “Everyone involved has done all they can to ensure she receives safe and compassionate care and sought to move Molly to a setting that better meets her needs as quickly as possible. Teams continue to do their very best to help ensure Molly gets the care she needs.”
The National Autistic Society says it hears from hundreds of people trapped in a similar cycle.
It wants the government and NHS to put more money into mental health services that support people at home and to intervene early when there are problems.
The charity’s head of research, Tim Nicholls, says that unless this is done the pattern will repeat itself and “one of the great human rights crises of our generation” will continue.
It is hard to calculate how much Molly’s latest stay in the general hospital will have cost, but according to the Nuffield Trust health think-tank, a paediatric NHS hospital bed costs nearly £500 a day. If a child has an eating disorder that rises to about £1,400 a day.
The NHS hasn’t commented on the financial impact of the nearly 200 days Molly has spent at the hospital, but with the costs of employing agency mental health staff included, it could easily have reached a quarter of a million pounds.
While the NHS runs most mental health services for children, councils also provide community-based support.
In a recent survey, 79% of directors who run council children’s services in England said there was “rarely” or “never” appropriate beds available for children with complex needs.
Steve Crocker from the Association of Directors of Children’s Services in England said they had seen “a real increase in the number of children stuck on hospital wards with mental health issues”.
Until recently he ran children’s social care in Hampshire, where Molly lives. While he can’t comment on individual cases, he says generally the need for change is urgent and “we also need to push government for a full review around children’s mental health services”.
The government says its ambition is to halve the number of autistic people and those with a learning disability in mental health hospitals by March 2024. A Department of Health and Social Care spokesperson added that this is backed by extra funding and “our action plan to improve community support and reduce over-reliance on mental health hospitals”.
In April, Molly’s family says she became so distressed the children’s ward was closed to other patients. Ten days later she was moved to a mental health unit – even though that has not worked for her in the past. It is meant to be a short-term solution but her family say no other options are currently being discussed.
I last spoke to Molly a couple of days ago. She had had a few trips out with her parents and was desperate to get on with life.
And if she can get the right support, her hopes of staying out of hospital and going to college should be possible.
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