Parents warn ‘monstrous’ changes to autism referral rules for children will ‘cost lives’
Parents have condemned rule changes by NHS bosses that mean children must now be in “crisis” before they can be referred for an autism diagnosis in the Bristol region.
Healthcare provider Sirona has introduced strict new criteria governing who is eligible for its service after seeing a 350% increase in young people waiting for an assessment over the past two years.
But horrified parents and carers say the move, which came “without warning”, is “monstrous” and will “cost lives”.
They have launched a campaign group called Assess for Autism along with a crowdfunding appeal to challenge the decision in court – which at the time of writing was rapidly approaching its £3,000 target.
Under the six-point criteria, which came into force on 1 March, children will only be referred if they have “severe and enduring” mental health issues, such as being a high risk to themselves or others, are involved with youth offending, have very low levels of communication, are in care or on a child protection plan, or if their education or family is breaking down.
Even those who are referred face a two-year wait to be seen in Bristol, North Somerset and South Gloucestershire (BNSSG).
Sirona and the Integrated Care Board (ICB), which formally approved the new policy, insist it is necessary because families are waiting too long for an initial assessment and that resources can now be focused on those with the “highest clinical need or [who] are the most vulnerable”.
It says the approach is now more in line with services elsewhere and that youngsters do not require a diagnosis to have their needs met – a claim parents dismiss as “nonsense”.
‘Swift legal action the only option’
Assess for Autism says Sirona’s own calculations show 60% of young people in Bristol will miss the chance to be assessed and that suicide rates are much higher in autistic communities, with undiagnosed people at much greater risk.
An Assess for Autism spokesperson said children would now have to be at crisis point before being referred.
“It is deeply concerning that the ICB has chosen to ignore the overwhelming evidence of the positive impact early diagnosis can have,” the spokesperson said. “By implementing this regressive policy, the ICB is effectively creating a mental health crisis among the city’s young population.
During the last Bristol SEND inspection in late 2022, Ofsted concluded the relationship between families and SEND services remains ‘fractured’.
“The decision to restrict referral for autism assessments will only exacerbate this issue,” the spokesperson added. “Families were not consulted on these changes and swift legal action is the only recourse we have to get this policy changed.”
“We cannot let the ICB’s decision stand unchallenged and we must come together as a community and take action.”
They urged the local health board and Sirona to reconsider the policy and work with parents, carers and schools to develop a “more compassionate and inclusive approach” to autism waiting lists.
‘Not eligible until they’re broken’
Sirona came under fire for its decision at two recent council meetings.
Bristol City Council health scrutiny committee chairman Graham Morris, a Conservative councillor for Stockwood, said he was “very disappointed with the way it has been sprung on us”. He noted that Sirona had been at the committee in December but had given “no warning”.
Meanwhile Lib Dem group leader Jos Clark raised questions at the meeting, on Monday 20 March, as to the legality of Sirona’s move. Councillors heard the chairs of the three local health & wellbeing boards, who also sit on the BNSSG multi-agency Integrated Care Partnership, were seeking a meeting with Sirona to hear more details, the implications and what could be done about it.
Three local campaigning mums shared their stories at the meeting, explaining how hard they’d had to battle to get their children an autism diagnosis and support – even before the latest rule changes.
Mother-of-two Fiona Castle, of Horfield, whose youngest son is autistic, said her 11-year-old was diagnosed aged four and received an education, health and care plan (EHCP) despite a health visitor previously telling her he was just “boisterous”.
He had 1:1 support at primary school and now attends a specialist autism secondary school.
“The journey for us as a family, post diagnosis, has been long and hard,” Castle said, adding that it harmed her health, relationships and employment prospects. “I have had to fight for everything my son was lawfully entitled to and have firsthand experience of the council’s ‘fractured relationships with parent carers’.
“I can only imagine how difficult this journey will be for families without an autism diagnosis, who aren’t even eligible for a diagnosis,” Castle added. “The idea that they aren’t eligible until they’re effectively broken, and then have to wait two years, is monstrous.”
Meanwhile Jai Breitnauer, of Bedminster, whose 14-year-old is autistic and 11-year-old is on the waiting list to be assessed, said the referral policy change ia “naive, inappropriate and dangerous” and would “cost lives”.
“Research shows that autistic people are twice as vulnerable to suicide and in undiagnosed autistics the risk is exponentially higher,” she said.
Jen Smith, the former vice-chair of support organisation Bristol Parent Carer Forum, described the new policy as “one of [Bristol’s] worst decisions” in recent years.
“That children and young people in Bristol, and the other local authorities, must be at crisis point before being able to access an assessment is creating years and years of trauma,” she said.
“This is the time where there should be early intervention – a chance to interrupt the predictable path of children thinking there is something wrong with them and adults treating them as if there is something wrong with them.”
‘Told this was a done decision’
Sirona’s changes come as South Gloucestershire Council cabinet approved the findings of a scrutiny commission taskforce to improve early intervention for girls with autism.
Opposition councillor Alison Evans (Labour, Woodstock), who chaired the group, told the meeting on Monday 13 March she was “alarmed” by the new criteria that seemed to “completely go against our report about identifying girls with autism earlier”.
“Now, to even be referred for an autism diagnosis you now need to be more or less in crisis rather than us having our preventative approach to ensure children flourish.”
Conservative cabinet member for education, skills and employment Erica Williams said Sirona’s new policy “does not undermine [the early intervention improvements] but makes things more difficult”.
“If we can as a whole council voice our concerns, we don’t want to wait until it’s too late to intervene,” she said.
South Gloucestershire’s education, language and skills service director Hilary Smith said the council had been “informed that this was a decision being taken” and had not had input.
Families ‘waiting too long’
Sirona and BNSSG ICB said in a statement: “There has been, for some time, a steady rise across England in the number of children and young people seeking a referral for an autism assessment or paediatric appointment and this has further increased because of the impact of the Covid-19 pandemic.
“Within Bristol, North Somerset and South Gloucestershire, we have seen a 350% rise in the numbers of children waiting for an autism assessment over the past two years.
“As an Integrated Care System, we recognise families are waiting too long for their children to receive an initial assessment for autism and we do not have the capacity to reduce this.
“We changed our referral criteria so our resources can be directed towards the children that have the highest clinical need or are the most vulnerable.
“It is important that we do not continue to accept more children and young people than we can see and assess and our new approach has also brought us more in line with services across the rest of the country.
“Children do not require a diagnosis to have their needs met in schools and other settings, and the wait for the outcome of a diagnostic assessment can delay children receiving appropriate support.
“We are committed to continuing to work together with our partners to identify ways of reducing the overall wait times for all families.
“We have also secured funding to employ additional staff to provide additional clinics for children to further address the long waits.
“Longer term, we are planning to work with partners to ensure neurodiversity is understood and recognised with needs met without a medical diagnosis.”
It said any child referred before 1 March would be assessed under the previous criteria and that it had set up a helpdesk which can be contacted by email at sirona.cpasdhelpdesk@nhs.net or phone on 0300 125 5560.”
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Without having access to staff who are trained to help children cope with autism, continually causes children and their carers, to live in a stressful world of turmoil. My grandson was never referred as a child and he is now a deeply depressed 21yr old, and we are now waiting for an adult assessment.
The authorities know that this is not a condition that a sufferer will outgrow and that they will need continual help and reassurance, and that by deigning them access to services as a child, it will severely hinder their ability to understand themselves and lack the provision of a secure framework that they can depend on for help in the future.