Children ‘being rejected’ by NHS mental health services if they’re autistic, parents say
Damien Dalmayne, 17, is autistic. He also battles mental health issues that have left him unable to get out of bed and contemplating harming himself.
Warning: This story contains references to suicide
“There were thoughts of me doing stuff to myself. I never did but there were stages where it would get pretty hard and it really did get to that point that I was really considering it,” Damien says.
His depression spiralled during the COVID lockdowns and when he was 15 he was referred to his local NHS mental health team in Greenwich.
The paediatrician who made the referral recommended that Damien be seen “urgently”.
But Child and Adolescent Mental Health Services (CAMHS) rejected the referral, instead referring Damien and his family to a local social services team.
Damien believes he was rejected because of his autism diagnosis.
“They [CAMHS] think they can’t help people with special needs. They think ‘that’s just a terminal illness’ even though it’s not,” says Damien.
In its rejection letter, Greenwich CAMHS agreed Damien “experiences emotional difficulties”.
But, noting his autism diagnosis, it suggested he see the area’s Children with Disabilities Team, rather than a specialist mental health service.
Crucially, his mother, Emma Dalmayne, says this meant they were unable to access specialist services like therapy to help Damien.
Autism and mental health ‘seen as separate issues’
Ms Dalmayne says a confused social worker called her after Damien’s referral was redirected to their team.
“They said ‘why have we been called?’ I said ‘I don’t know’.”
“CAMHS see autism and mental health as separate for some reason,” says Ms Dalmayne.
“If you’re not well you go to a doctor, you get help. But no, if you’re mentally ill and autistic and go to a doctor, you’re not getting anything. You’re told ‘well we can’t see you because you have a neurological difference’.”
The NHS trust responsible for Greenwich CAMHS said it is unable to comment on individual cases but stressed it does accept referrals for autistic children who have a “severe and enduring mental health need”.
However, it said children may be referred to other services “where referrals do not meet the threshold for CAMHS”.
CAMHS are run by different health trusts throughout the UK.
Ms Dalmayne is campaigning for better access to CAMHS for autistic children
Ms Dalmayne says she has spoken to other parents with autistic children who have had similar experiences.
She says she knows one mother who is scared to tell her local CAMHS that her son has been diagnosed as autistic because she worries they will stop his care.
“It’s not an inclusive world. We don’t feel included at all,” says Ms Dalmayne, who is also autistic.
Damien believes NHS services don’t think autistic people can engage effectively with therapy.
“It’s not like just talking to a wall. They [autistic children] will end up listening and if they can they will end up talking.”
He says his experience with CAMHS left him feeling “inhuman”.
Damien ended up using his disability benefits to pay for private therapy.
“If I had waited probably six months [longer to get therapy], I probably wouldn’t be here. They [CAMHS] really put my health at risk,” he says.
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Oxleas NHS Foundation Trust, which administers Greenwich CAMHS, said: “Currently, just over 16% of our CAMHS caseload includes children and young people with both an autism diagnosis and a severe and enduring mental health need. This does not include children and young people either waiting for or currently being assessed by an autism diagnostic service alongside CAMHS.
“Should individual circumstances change, re-referrals can be made. CAMHS is just one part of a much larger collection of services delivering emotional health and wellbeing support and services to children and young people.”
People with autism more likely to experience mental health issues
Sky News tried to get a clearer picture of autistic children’s access to CAMHS across the UK, but when we requested data from health trusts, the majority did not disclose the number of referrals and rejections for autistic children.
We did learn of the serious pressure facing services nationally, with data showing total referrals to CAMHS had risen by 60% between 2018 and 2023. Rejections from CAMHS were up by 30% across the same period.
While it’s difficult to get a sense of the number of autistic children accessing CAMHS, autistic people are more likely to experience mental health problems than people who aren’t autistic.
Damien says the rejection by CAMHS put his health at risk
Sky News spoke to one CAMHS nurse anonymously – we aren’t identifying the health trust she works for.
She said nationally it’s a mixed picture in terms of the level of care autistic children receive.
“We [CAMHS] certainly don’t do enough for children that have been diagnosed with autism in terms of their post-diagnostic support.”
She says she has witnessed preconceptions about autism among staff that can lead to autistic children not getting the care they need.
Skills ‘aren’t consistent’ across health service
“Some people [working in CAMHS], sometimes might tend to say ‘well it’s [their issues are] because of their autism’ as opposed to thinking well actually they might be autistic but they can also have a mental health difficulty that can be supported,” says the nurse.
“A child that has autism and mental health needs, that’s not going to be solved by social services, they need mental health support.”
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She says skills aren’t “consistent” across the health service and that autistic children can be at a disadvantage if their behaviour means more traditional forms of talking therapy aren’t appropriate.
The nurse continues: “I’ve known it happen where people say ‘oh this person is not engaging’ so they get discharged.
“Sometimes therapy is not always helpful, then it’s about different, more holistic ways to support children and support behavioural changes.
“I do think there’s a need to increase skills within CAMHS absolutely. [Staff] recruitment and retention has been difficult across the board.”
Ms Dalmayne is campaigning for better access to CAMHS for autistic children, her biggest fear is that autistic children and adults are hurting, and even killing themselves, if they can’t access mental health support.
“It makes me feel we’ve got to do everything we can to change it,” she says.
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK
UK
Why I’m praying assisted dying bill passes major vote – even though it’s not going to happen in my lifetime
On Friday, the social fabric of England and Wales might be changed forever.
MPs are set to vote on the assisted dying bill and supporters are confident that they have the numbers to win.
But the hugely controversial legislation polarises opinion. Communities remain divided, and medical colleagues can’t agree.
Three royal colleges have withdrawn support for the bill in its current form. They want more time to be given for further scrutiny of the legislation.
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How will the assisted dying bill work?
Frank Sutton does not have time. When we went to Frank’s home in East Dulwich, London, last November to watch the vote unfold she already had terminal liver disease and cancer.
As the vote was passed with a majority of 55, Frank broke down in tears and said: “Finally, I can die in peace.”
Frank is unlikely to live long enough to see assisted dying introduced in England and Wales. If the legislation passes, it will be introduced in four years.
Frank now suffers from diabetes and fibromyalgia.
She said: “On top of everything I’ve got, to start developing more comorbidities, I have a massive thought in my head, which I live with every day, which is, is my body, am I on the road to the end, you know, is my body just giving up?
“I mean, I was taking morphine anyway for pain, but now I’m living on morphine, and that’s not a life that you want.”
But even as MPs prepare to vote, many important questions remain over who will take responsibility for determining a patient’s mental capacity and their prognosis. The Royal College of Psychiatrists said it was approaching Friday “with trepidation”.
Read more:
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Palpable anger as both sides of debate gather
Dr Annabel Price, the Royal College of Psychiatrists’ lead on assisted dying
Dr Annabel Price, the RCPsych’s lead on assisted dying, told Sky News: “If this bill as it stands proceeds through the rest of the parliamentary process, we as psychiatrists are left in a situation where there are so many unknowns about what is expected of us, about what patients can expect and about the safety of the process.
“We will continue to engage and there may be opportunities for reconsideration at further points in the bill. But yes, I approach this professionally with trepidation.”
The Royal College of GPs says the assisted dying process should happen outside of general practice.
Dr Susi Caesar is in favour of the bill being passed and feels it is okay for the medical community to be so divided on the issue.
She said: “I think people have the right to make their own choices and absolutely I would not want to see anybody forced into being part of this process who didn’t. Our current system is broken and this law would go a long way towards fixing it, at least for a certain group of people.”
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Psychiatrists raise assisted dying concerns
But the Royal Colleges of Physicians (RCP) also has reservations about the bill in its current form.
It says it would be hard for a panel of experts who have no connection to a patient requesting an assisted death to determine if the person is being coerced or has mental capacity.
Dr John Dean, clinical vice president at the RCP has concerns, saying: “Currently decisions clearly are made by patients but agreed by single doctors and then the social worker and psychiatrists are not meeting the patient and those that have been caring for them.
“This has to be done in keeping with modern clinical practice which is complex decisions made with patients and families by teams.”
But for patients like Frank, these concerns have not changed her mind.
She said: “I’m praying for Friday that it still goes through because, like I said, it’s not going to happen in my lifetime, but the thought that people like me who still try to look nice, who still tried to have a life and everything, that they can just have some peace of mind and they can have a weight lifted off their shoulders knowing that they’re going to be able to do it peacefully with their family.”
UK
Crucial evidence in Post Office scandal found in garage of retired computer expert after 30 years
A damning report into the faulty Post Office IT system that proceeded Horizon has been unearthed after nearly 30 years – and it could help overturn criminal convictions.
The document, known about by the Post Office in 1998, is described as “hugely significant” and a “fundamental piece of evidence” and was found in a garage by a retired computer expert.
Capture was a piece of accounting software, likely to have caused errors, used in more than 2,000 branches between 1992 and 1999.
It came before the infamous faulty Horizon software scandal, which saw hundreds of sub postmasters wrongfully convicted between 1999 and 2015.
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What is the Capture scandal?
The ‘lost long’ Capture documents were discovered in a garage by a retired computer expert who came forward after a Sky News report into the case of Patricia Owen, a convicted sub postmistress who used the software.
Adrian Montagu was supposed to be a key witness for Pat’s defence at her trial in 1998 but her family always believed he had never turned up, despite his computer “just sitting there” in court.
Mr Montagu, however, insists he did attend.
He describes being in the courtroom and adds that “at some point into the trial” he was stood down by the barrister for Mrs Owen with “no reason” given.
Adrian Montagu was supposed to be a key witness for Pat’s defence
Sky News has seen contemporaneous notes proving Mr Montagu did go to Canterbury Crown Court for the first one or two days of the trial in June 1998.
“I went to the court and I set up a computer with a big old screen,” he says.
“I remember being there, I remember the judge introducing everybody very properly…but the barrister in question for the defence, he went along and said ‘I am not going to need you so you don’t need to be here any more’.
“I wasn’t asked back.”
The ‘lost long’ Capture documents were discovered in a garage
Sky News has reached out to the barrister in Pat Owen’s case who said he had no recollection of it.
‘An accident waiting to happen’
The report, commissioned by the defence and written by Adrian Montagu and his colleague, describes Capture as “an accident waiting to happen”, and “totally discredited”.
It concludes that “reasonable doubt exists as to whether any criminal offence has taken place”.
It also states that the software “is quite capable of producing absurd gibberish”, and describes “several insidious faults…which would not be necessarily apparent to the user”.
All of which produced “arithmetical or accounting errors”.
Sky News has also seen documents suggesting the jury in Pat Owen’s case may never have seen the report.
What is clear is that they did not hear evidence from its author including his planned “demonstration” of how Capture could produce accounting errors.
But flaws were found within it
Pat Owen was convicted of stealing from her Post Office branch in 1998 and given a suspended prison sentence.
Her family describe how it “wrecked” her life, contributing towards her ill health, and she died in 2003 before the wider Post Office scandal came to light.
Her daughter Juliet said her mother fought with “everything she could”.
“To know that in the background there was Adrian with this (report) that would have changed everything, not just for mum but for every Capture victim after that, I think is shocking and really upsetting – really, really upsetting.”
Pat died before the contents of the report came to light
The report itself was served on the Post Office lawyers – who continued to prosecute sub postmasters in the months and years after Pat Owen’s trial.
‘My blood is boiling’
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‘They knew software was faulty’
Steve Marston, who used the Capture software in his branch, was one of them – he was convicted of stealing nearly £80,000 in September 1998.
His prosecution took place four months after the Capture report had been served on the Post Office.
Steve says he was persuaded to plead guilty with the “threat of jail” hanging over him and received a suspended sentence.
He describes the discovery of the report as “incredible” and says his “blood is boiling” and he feels “betrayed”.
“So they knew that the software was faulty?,” he says. “It’s in black and white isn’t it? And yet they still pressed on doing what they did.
“They used Capture evidence … as the evidence to get me to plead guilty to avoid jail.
“They kept telling us it was safe…They knew the software should never have been used in 1998, didn’t they?”
Steve says his family’s lives were destroyed and the knowledge of this report could have “changed everything”.
He says he would have fought the case “instead of giving in”.
“How dare they. And no doubt I certainly wasn’t the last one…And yet they knew they were convicting people with faulty software, faulty computers.”
Steve’s prosecution took place four months after the Capture report had been served on the Post Office
The report is now with the Criminal Cases Review Commission, the body investigating potential miscarriages of justice, which is currently looking into 28 Capture cases.
A fundamental piece of evidence
Neil Hudgell, the lawyer representing more than 100 victims, describes the report as “hugely significant”, “seismic” and a “fundamental piece of evidence”.
“I’m as confident as I can be that this is a good day for families like Steve Marston and Mrs Owen’s family,” he says.
“I think (the documents) could be very pivotal in delivering the exoneration that they very badly deserve.”
He also added that “there’s absolutely no doubt” that the “entire contents” of the “damning” report “was under the noses of the Post Office at a very early stage”.
Pat Owen
He describes it as a “massive missed opportunity” and “early red flag” for the Post Office which went on to prosecute hundreds who used Horizon in the years that followed.
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Sir Alan Bates attacks ‘kangaroo court’ Post Office scheme
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“It is a continuation of a theme that obviously has rolled out over the subsequent 20 plus years in relation to Horizon,” he says.
“…if this had seen the light of day in its proper sense, and poor Mrs Owen had not been convicted, the domino effect of what followed may not have happened.”
What the Post Office said
Sky News approached the former Chief Executive of the Post Office during the Capture years, John Roberts, who said: “I can’t recall any discussion at my level, or that of the board, about Capture at any time while I was CEO.”
A statement from the Post Office said: “We have been very concerned about the reported problems relating to the use of the Capture software and are sincerely sorry for past failings that have caused suffering to postmasters.
“We are determined that past wrongs are put right and are continuing to support the government’s work and fully co-operating with the Criminal Cases Review Commission as it investigates several cases which may be Capture related.”
A Department for Business and Trade spokesperson said: “Postmasters including Patricia Owen endured immeasurable suffering, and we continue to listen to those who have been sharing their stories on the Capture system.
“Government officials met with postmasters recently as part of our commitment to develop an effective and fair redress process for those affected by Capture, and we will continue to keep them updated.”
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