Bristol Stops Autism Assessments For Children And Young People
Bristol will no longer be allowing all children and young people to have an autism assessment, after applying a local policy this week to stop them.
The action has caused upset and anger in the Bristol Send (Special educational Needs and Disabilities) community, with families now worried about how their child will access an assessment.
The issue was raised by Bristol Send campaigner Sally Kent, who said: ‘Just wondering how lawful this new autism referral criteria is @SironaCIC? Could it be discriminatory and open to judicial review? I’d say, quite possibly.’
Sirona Care and Health wrote on their website: ‘There has been, for some time, a steady rise across England in the number of children and young people seeking a referral to our autism service and this has further increased because of the impact of the Covid-19 pandemic.
‘In order to meet the needs of as many children, young people and families as possible, we have moved to a needs-led model of support. Under this model, support services are designed to be flexible and responsive to changes in an individual’s circumstances and needs.
‘This means the way we manage our waiting lists is changing. From 1 March, referrals received will be prioritised on the needs of each child, young person and family.’
Children and young people meeting the following referral criteria can be referred :
- Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET – not in education, employment, or training – and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.?
- Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person’s needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
- Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning).
- Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others).
- Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours.
- Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)
Sirona Care and Health say ‘we are only able to accept referrals for children and young people (CYP) who meet one of the referral criteria.’
The new approach to autism referrals has been part of a Sirona Care and Health strategy coming together over the last year.
At the end of 2021, Bristol, North Somerset and South Gloucestershire Parent Carer Forums, were asked by Sirona Care and Health to run a survey gathering feedback from parent carers about the difference a diagnosis makes. This launched in in December 2021.
A Facebook post by North Somerset Parent Carers Working Together made in December 2021 said: ‘We’re gathering feedback from Parent Carers in Bristol, North Somerset and South Gloucestershire (BNSSG) who have a child either diagnosed with autism, or currently awaiting an autism assessment 
We’ve been asked to gather your experiences and thoughts, to see what difference a diagnosis actually makes, and we need to hear your views.
Hop over to our quick survey and have your say!’
The results of the survey were collated by Bristol, North Somerset and South Gloucestershire Parent Carer Forums, who worked together to interpret the results, releasing a report of the findings in February 2022.
The new 2023 diagnostic procedure being implemented by Sirona Care and Health not only flies in the face of NICE Guidelines it contradicts the findings from the survey they commissioned.
The forums’ findings were that an autism diagnosis was critical in enabling autistic children and young people to access specialist school places, social care assessments, short breaks as well as Send provision in education.
The survey also found that 81 per cent of families who were on the autism pathway waiting list at the time, felt that receiving a diagnosis helped other people better understand their child.
The final conclusion of the forums combined was that support and signposting was needed alongside a ‘timely diagnosis’.
The People Scrutiny Commission meeting which took place prior to the release of the survey on 19 July 2021, was the follow up to the Stephen Bubb report which found that Bristol could no longer call itself an autism friendly city.
One slide in a presentation said that ‘We are working across BNSSG through the Healthier Together programme on Learning Disabilities and Autism.’
Notes made by Democratic Services on the Commission’s page says: ‘It was noted that there were systemic problems which had developed over a number of years, and that there would not be a quick resolution; that the action plan would need to be developed via co-production and recognition of people’s lived experiences.’
However, Bristol City Council refuses to recognise the Bristol Parent Carer Forum, having ceased working with them in the summer of 2022. It currently has no official co-production partner in the city as set out in the Send Code of Practice.
In that meeting, former Executive Director of People (now Executive Director of Adults and Communities) Hugh Evans said: “We as a product of this report, we are committed to Sir Stephen’s main challenge, which is that in order to be an autism friendly city, Bristol and its partners in the region – South Gloucestershire, North Somerset – need to be more joined up. NHS, Local Authority, the criminal justice system the DWP and of course the really important voluntary community sector services that are absolutely fundamental to the health communities that we need to engender in order to better support people with these kinds of needs.”
In the People Scrutiny Commission meeting immediately following the release of the parent carer forums’ report, Alun Davies, chair of Bristol Disability Equality Commission presented a report by Hugh Evans which was an update on how things were progressing with the recommendations in the Bubb report.
The report informed the commission that a Building Rights ‘task and finish’ group was set up. This included representatives from:
Avon and Somerset Police
Avon and Wiltshire Mental Health Partnership Trust
Bristol City Council
Bristol Disability Equality Forum
British Transport Police
Carers Support Centre
Freeways
National Autistic Society
NHS Bristol, North Somerset and South Gloucestershire CCG
North Bristol NHS Trust
WECIL
At the time, the group only had two autistic people who worked for one of the organisations, an employee who was also a carer, a man with a learning disability and three people who had joined as carers. Although it wasn’t specified if these were parent carers.
None of the listed groups are parent carer led organisations directly representing the needs of children and young people with Send – which would include those who are potentially autistic.
At the same meeting, cross party concern was raised about the Bristol EHCP crisis, which included a health update given by Head of Children’s Services at Sirona, Gerry Bates.
Bates said that referrals to all their community health services has increased over the last year. According to Sirona’s data, there has been a 38 per cent increase in referrals to community paediatrics during 2020/2021 and referrals for autism assessments has increased by 160 per cent.
Sirona Health and Care prioritsed children during referrals saying that it was done according to a child’s clinical presentation saying: “What they present in the clinic and make a decision about which children need to be seen first. The types of children we are prioritising are the little children, the little ones with complex neurodisability and we’re prioritising our statutory work, so that’s the EHC Needs Assessment our contribution to safeguarding children in care, children who are on controlled medication where that medication needs to be reviewed.”
In the meeting she said that Sirona were also looking at the system to see how they can move some of their resource and support for children much earlier on for needs-based support rather than the focus being on diagnosis.
Bates talks about how Sirona is managing autism referrals in the video below.
Meanwhile on Twitter, campaigner Sally Kent, has warned NHS Bristol, N Somerset & S Gloucestershire Integrated Care Board that their new criteria may not be legally sound and opened to Judicial Review.
She also says that she has been contacted by Special Educational Needs Coordinators (SENCo) worried that they have not been made aware of it.
She says that ‘they are worried, really worried!’
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