Potentially autistic children who committed suicide with mental health problems in Staffordshire were left at risk of self-harm after receiving inadequate and unsafe care, according to a leaked internal NHS report.
An investigation, triggered by the parents' grave concerns, found that the needs of very troubled 18-year-olds in the county were neglected due to significant deficiencies in the provision of care by the two NHS-funded suppliers in the # 39. ;area.
The research team's 37-page unpublished report – as seen by the Guardian – highlights how vulnerable autistic young people with problems including anxiety have had to face long delays in receiving specialist assistance and have been repeatedly passed between different services. The two operators discussed which of them was responsible for the child's care, as one focused on autism and the other on mental health problems.
Clinical commissioning groups (CCG) of the NHS in Staffordshire have commissioned Northumberland Tyne and Wear (NTW) the NHS mental security service to review services for young people with autism in their area. It was triggered by long-standing criticism from two vendors, Midlands Psychology (MP), which had a focus on autism, and Midlands Partnership NHS Foundation Trust (MPFT), from families.
The survey found that health professionals dealing with young people did not perform adequate risk assessments and did not report risky behavior by those who showed they were in danger of harming themselves, even if those under 18 with autism they are more at risk of trying take their own life.
He also discovered that the autistic young people who were experiencing a mental health crisis received little support, although it also increased the risk of self-harm or suicide.
The NTW experts concluded that: "We as a team did not believe that the current approach to risk assessment and management was solid, coordinated or secure."
They were so worried by what they found that as soon as their inspection ended last July, they wrote to the National Health Service bodies asking them to order the two suppliers to "intervene immediately" to address five areas of inadequate practice that in their view, they represented a risk of harm to young people, without waiting for their formal relationship to arrive.
The GCC received the report last November, but they have not published it. Families fear that the NHS is trying to suppress the "scandal" of caring for autistic young people. Although the report has formulated a series of recommendations, little has changed, they say.
Although treatment defects were first identified in January 2015, they continued to cause problems and were still evident during his three-day service inspection last July, despite promises to eradicate them, says the group's report rating.
"These are really alarming results. It is deeply disturbing that families report that nothing has really changed seven months after the report was handed over to the GCC, and the best part of a year after serious initial concerns have been reported (to them)" , said the liberal-democratic MP Norman Lamb, who was the minister for mental health in 2012-15.
Tom Madders, director of Young Minds campaigns, said: "It is deeply disturbing that there are reports of deficiencies in medical care services (children and adolescents of mental health) in Staffordshire, and it is crucial that they are addressed. When children do not receive the help they need from mental health services, can lead to problems that worsen unnecessarily ".
Tracey Hay says she received very little help and had to face long delays when caring for her son while she was in a mental health crisis, although he tied the ligatures around her neck and threatened to kill her. A member of the CAMHS team (at MPFT) told her to ignore him if he said he wanted to kill himself, he added.
The investigation also found that one or both suppliers violated a set of guidelines issued by the NHS England, the Department of Health and the National Institute for Health and Care Excellence (NICE ) to guarantee or improve care for people with autism. For example, Midlands Psychology was diagnosing autism using an approach that did not have the support of NICE "and is not even effective in meeting the needs of young people with autism and clearly lacking a person-centered approach".
The families of autistic children found the psychology of the Midlands "extremely difficult to contact by telephone" because its switchboard was open only between 9:00 am and 1:00 pm. It was not long enough and the social enterprise should extend it at least at 9:00 am to 5:00 pm, the team said. Despite the recommendation, the opening times remain unchanged.
The report blames many of the longstanding "difficulties" and "tensions" between the two suppliers, who refused to treat some patients, saying it was the responsibility of the other. "As a result of this confusion, young people and their families are often involved in a series of multiple referrals between CAMHS and MP," the report noted.
This weakened the quality of care because "the two services were not effectively collaborating to provide young people with autism with the appropriate, coordinated assessment, support, interventions and assistance".
Claire Bailey, director of the MPFT child and family care group, said: "Patient safety is a priority for MPFT and I would like to provide reassurance that there are no cases of people being damaged. (But) I recognize that there have been identified defects included in the draft report. "Improvements have been made.
Angela Southall, chief executive officer of Midlands Psychology, said she had won prizes from the National Autistic Society for the quality of care provided. An action plan to address the problems has been identified and changes have already been made, he added.
Subject of study
Julia Carter complained to the NHS about the care she received from her 14-year-old son, who she prefers not to name. He is one of the parents whose concerns sparked last year's independent investigation into the services provided by the Midlands Partnership NHS Foundation Trust and Midlands Psychology, which among them take care of children under 18 in Staffordshire with autism problems and problems of mental health.
My child has an autism spectrum condition, severe dyspraxia and profound dyslexia. He was never diagnosed as a psychotic, but I felt that he had psychotic episodes, when he spoke alone, asking for a voice in his head if he should get hurt, cry and rock himself. The care he received from the two services that should have intervened to help him at a critical moment was terrible.
The doctor who saw him at MPFT's infant and child mental health services (CAMHS) was more interested in who should be responsible for his care than in treating him, and the psychologists in Midland Psychology, after finally seeing my son, I initially sent to my GP claimed 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 had begun to refuse food and injure himself. From the beginning his mental health was not properly managed and I had to quit my job to support him. This has had a great 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 CAMP team. However, the trust refused to accept the postponement and advised the GP to return to the psychology of the Midlands. When the NHS Ombudsman subsequently examined my complaint, MPFT admitted that it should have accepted the referral.
Then, to make matters worse, when the trust finally accepted the postponement – after the Midlands psychology said it was urgent – they should have seen it that day or the next business day. However, they did not offer him an appointment for 11 days or evaluated him up to five days later. The ombudsman pointed out that it was a violation of the urgent time frames of trust.
The impact on my child has been profound and long term. We're still dealing with it. Initially, due to the delay in treatment, he was unable to start high school in year 7. He had to stay at home, eventually receiving taxes paid by the local authority. Often these lessons were held with my son hidden in the closet under the stairs or he just couldn't make it at all.
In terms of emotional impact, this was also profound. Our family struggled to keep my son safe during his extremely poor mental health episodes. He went back and forth with conversations with himself about escape and how he needed everything to stop. He was not aware of my surroundings or of me during these episodes. It was scary and heartbreaking to see. His two sisters, one of 16 and one of 10, had to help protect the doors and windows in case he tried to escape during these episodes, while trying to get him through them and to calm him down.
Both services disappointed him in a critical period of his young life and what we went through because of this should never be allowed to happen again. People who commission NHS services to young people worried like my child have to start having a more rigorous supervision of services because next time a parent may not get to a window fast enough.
When a child asks a parent for help, the natural thing for every parent is to provide that support. When your child is asking for help and his life is at risk, not knowing if you can get help for them has a huge effect on you. It changes you and life is never the same again, since you feel that you have dropped your child, that your most fought battle was not good enough, that you should have done more. But I like so many parents in Staffordshire who are struggling to know what we can do more, when the brick walls are put in place of compassion and care ".
As told to Denis Campbell
. (tagToTranslate) Autism (t) Mental health (t) NHS (t) Youth (t) Children (t) Health (t) Society