Potentially suicidal autistic children with mental health problems in Staffordshire have been left at risk of self-harm after receiving inadequate and unsafe care, according to a damning leaked internal NHS report.
An inquiry, sparked by parents’ serious concerns, found that the needs of highly troubled under-18s in the county were neglected as a result of significant failings in care provision by the two NHS-funded providers in the area.
The inquiry team’s unpublished 37-page report – seen by the Guardian – outlines how vulnerable young autistic people with problems including anxiety faced long delays in receiving specialist help and were repeatedly passed between different services. The two care providers argued over which of them was responsible for the child’s care, as one focused on autism and the other on mental health issues.
NHS clinical commissioning groups (CCGs) in Staffordshire commissioned the Northumberland Tyne and Wear (NTW) NHS mental health trust to review services for young people with autism in its area. It was triggered by longstanding criticism of two providers, Midlands Psychology (MP), which had a focus on autism, and Midlands Partnership NHS Foundation Trust (MPFT), from families.
The inquiry found that health professionals dealing with the young people did not carry out proper risk assessments, and did not record risky behaviour by them that showed they were in danger of harming themselves, even though under-18s with autism are at higher risk of trying to take their own life.
It also found that autistic youngsters who were experiencing a mental health crisis received poor support, despite that also raising their risk of self-harm or suicide.
The NTW experts concluded that: “We as a team did not feel that the current approach to risk assessment and management to be robust, co-ordinated or safe.”
They were so worried by what they found that as soon as their inspection ended last July, they wrote to the NHS bodies that brought them in urging them to order the two providers to take “immediate action” to tackle five areas of inadequate practice that, in their view, posed a risk of harm to young people, without waiting for its formal report to arrive.
The CCGs received the report last November, but have not published it. Families fear that the NHS is trying to suppress the “scandal” of autistic young people’s care. Despite the report making a raft of recommendations, little has changed, they claim.
Although the flaws in care were first identified in January 2015, they continued to cause problems and were still apparent during its three-day inspection of services last July, despite promises to eradicate them, the report from the evaluation team says.
MP and mental health campaigner Norman Lamb MP
“These are really alarming findings. It is deeply disturbing that families report that nothing has really changed seven months after the report was delivered to the CCGs, and the best part of a year after serious early concerns were first reported back [to them],” said the Liberal Democrat MP Norman Lamb, who was the minister for mental health in 2012-15.
Tom Madders, the campaigns director of Young Minds, said: “It’s deeply worrying that there are reports of failings in CAMHS [child and adolescent mental health services] care in Staffordshire, and it’s crucial that these are addressed. When children don’t get the help they need from mental health services, it can lead to problems getting worse unnecessarily.”
Tracey Hay claims she received very little help and faced long delays getting care when her son was in a mental health crisis, despite him tying ligatures around his neck and threatening to kill her. A member of the CAMHS team [at MPFT] told her to ignore him if he said he wanted to kill himself, she added.
The inquiry also found that either one or both providers were breaching a number of guidelines issued by NHS England, the Department of Health and National Institute for health and Care Excellence (NICE) to ensure or improve care for those with autism. For example, Midlands Psychology were diagnosing autism using an approach that did not have NICE’s backing “and nor is it effective in meeting the needs of young people with autism and clearly lacks a person-centred approach”.
Families of autistic children found Midlands Psychology “extremely difficult to contact by telephone” because its switchboard was only open between 9am and 1pm. That was not long enough and the social enterprise should extend that to at least 9am to 5pm, the team said. Despite the recommendation, the opening hours remain unchanged.
The report blames many of the problems on longstanding “difficulties” and “tension” between the two providers, who refused to treat certain patients, saying it was the other’s responsibility. “As a result of this confusion young people and their families would often be caught up in a series of multiple referrals between CAMHS and MP,” the report found.
This undermined quality of care because “the two services were not effectively working together to provide young people with autism the appropriate, co-ordinated assessment, support, interventions and care”.
Claire Bailey, managing director of the children and families care group at MPFT, said: “Patient safety is a priority for MPFT and I would like to provide reassurance that there are no cases of individuals coming to harm. [But] I acknowledge that there were identified failings included in the draft report.” Improvements were being made.
Angela Southall, chief executive officer of Midlands Psychology, said it had won awards from the National Autistic Society for the quality of care it provided. An action plan to address the problems has been identified and changes hadalready been made, she added.
Julia Carter has complained to the NHS about the care received by her 14-year-old son, whom she prefers not to name. She is one of the parents whose concerns triggered last year’s independent inquiry into the services provided by Midlands Partnership NHS Foundation Trust and Midlands Psychology, who between them care for under-18s in Staffordshire with autism and mental health problems.
My son has autistic spectrum condition, severe dyspraxia and profound dyslexia. He was never diagnosed as psychotic, but I felt that he had psychotic episodes, when he was talking to himself, asking a voice in his head if should harm himself, crying and rocking. The care he received from the two services who should have stepped in to help him at a critical time was appalling.
The doctor who saw him at MPFT’s child and adolescent mental health services [CAMHS] was more interested in who should be responsible for his care than in actually treating him, and the psychologists at Midland Psychology, after finally seeing my son, initially sent me to my GP claiming that it was the quickest way to get a referral to CAMHS, and this was not the case.
He was 11 at the time. He had recently become very anxious and begun refusing food and hurting himself. From the start his mental health was not properly managed and I had to give up work in order to support him. That had a big knock-on effect on family life. He was under the care of Midlands Psychology for his autism, but his GP referred him to MPFT’s CAMHS team. However, the trust refused to accept the referral and advised the GP that he should go back to Midlands Psychology. When the NHS Ombudsman later investigated my complaint about this, MPFT admitted it should have accepted the referral.
Then, to make matters worse, when the trust did finally accept the referral – after Midlands Psychology said it was urgent – they should have seen him that day or the next working day. However, they then didn’t offer him an appointment for 11 days or assess him until five days after that. The ombudsman found that that was a breach of the trust’s urgent referral timeframe.
The impact on my son has been profound and long-term. We are still dealing with it. Initially, because of the delay in treatment he was unable to begin high school in Year 7. He had to stay at home, eventually receiving tuition paid for by the local authority. Often these lessons would take place with my son hidden in the cupboard underneath the stairs or he simply could not cope with them at all.
In terms of the emotional impact, this has also been profound. Our family struggled to keep my son safe during his episodes of extremely poor mental health. He would pace up and down having conversations with himself about escaping, and how he needed everything to stop. He was not aware of his surroundings or me during these episodes. It was frightening and heartbreaking to see. His two sisters, one then 16 and one 10, had to help guard the doors and windows in case he tried to flee during these episodes, while I tried to bring him through them, and calm him.
Both services let him down at a critical period in his young life and what we went through because of that should not be allowed to happen ever again. People commissioning NHS services for young people as troubled as my son have to start having more rigorous oversight of services because next time a parent might not get to a window quickly enough.
When a child asks a parent for help, the natural thing for any parent is to provide that support. When your child is asking you for help and their life is at risk, not knowing if you can get any help for them has a huge effect on you. It changes you and life is never really the same again, as you feel you let your child down, that your best hard fought battle was not good enough, that you should have done more. But I like so many parents in Staffordshire are struggling to know what more we can do, when brick walls are put up in place of compassion and care.”