By Adam Postans, local democracy correspondent. Part one.
Children must now be in “crisis” before they can be referred for an autism diagnosis in the Bristol region following controversial rule changes by NHS bosses.
Healthcare provider Sirona has introduced strict new criteria for who is eligible for its service after seeing a 350 per cent 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 is already over halfway to its £3,000 target in just one week.
Under the six-point criteria, which came into force on March 1, 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 as it is for an initial assessment and that resources can now be focused on those with the “highest clinical need or 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”.
Assess for Autism says Sirona’s own calculations show 60 per cent of young people in Bristol will miss out on the chance to be assessed and that suicide rates are much higher in autistic communities, with those undiagnosed at much greater risk.
An Assess for Autism spokesperson said children would now have to be at crisis point before being referred.
They said: “It is deeply concerning that the ICB has chosen to ignore the overwhelming evidence of the positive impact early diagnosis can have.
“By implementing this regressive policy, the ICB is effectively creating a mental health crisis amongst the city’s young population.
“During the last Bristol SEND inspection at the end of 2022, Ofsted concluded that the relationship between families and SEND services remains ‘fractured’.
“The decision to restrict referral for autism assessments will only exacerbate this issue.
“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.
The crowdfunder appeal, which has so far raised more than £1,800, is here: https://www.crowdjustice.com/case/assess-for-autism/?fbclid=IwAR36K9NRwn1R8GmVliKAdYYM_RfVPc2diYlf18lFV6afpyvkSCcutvDVse8
Sirona came under fire for its decision at two recent council meetings.
Bristol City Council health scrutiny committee chairman Cllr Graham Morris (Conservative, Stockwood) said: “I am very disappointed with the way it has been sprung on us like this.
“Sirona were here in December and we had no warning that this was coming.”
Lib Dem group leader Cllr Jos Clark asked at the meeting on Monday, March 20: “Is what they’re doing legal? I’m really surprised they’re able to do this.”
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.
The changes come as South Gloucestershire Council cabinet approved the findings of a scrutiny commission taskforce to improve early intervention for girls with autism.
Opposition Cllr Alison Evans (Labour, Woodstock), who chaired the group, told the meeting on Monday, March 13: “I’m alarmed by the new Sirona referral criteria that seems 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 Cllr Erica Williams said: “We have implemented improvements to moving forward to early intervention.
“All [Sirona’s new policy] does is not undermine but makes things more difficult definitely, and if we can as a whole council voice our concerns, we don’t want to wait until it’s too late to intervene.”
The council’s education, language and skills service director Hilary Smith said: “We were not involved in the decision making, we were informed that this was a decision being taken.”
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 per cent 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 March 1 would be assessed under the previous criteria and that it had set up a helpdesk which can be contacted by email at email@example.com or phone on 0300 125 5560.”