ADHD Assessments For Many Bristol Children Blocked By Sirona

• ADHD Assessments Blocked by Sirona and the ICB as well as Autism and Dyspraxia Assessments

A row over the autism assessment process in Bristol which has seen the implementation of criteria blocking access for all children and young people has escalated after it was revealed that access to the community paediatric service has also been limited.

This will mean that children with suspected ADHD will not be seen unless in crisis. And those with suspected Developmental Coordination Disorder or dyspraxia will not be seen at all.

Families have been successful crowdfunding money to start Judicial Review action against the Bristol, North Somerset and South Gloucestershire Integrated Care Board (ICB) for what they are calling ‘harmful changes’.

Campaigners from Assess for Autism say: ‘As parents and carers of children with autism, we know firsthand the immense struggles families face in accessing the support their children need. The changes made by the ICB will only exacerbate these difficulties, leaving many vulnerable children and young people without the care and assistance they require.’

But a Tweet by journalist Chaminda Jayanetti on Sunday showed that similar criteria had now been applied for referrals to Sirona’s community paediatrics.

The rules aren’t just changing for autism. Local NHS managers have also tightened rules for referrals to community paediatric services, shown below.

A letter sent by the local NHS provider says just c40% of current referrals for autism/paediatrics would meet the new criteria pic.twitter.com/2u2WUY8cn1

— Chaminda Jayanetti (@cjayanetti) March 26, 2023

Sirona’s web pages for autism assessments and community paediatrics were updated showing the new ‘needs led’ approach put in place at the start of March 2023.

Any referral made to the community paediatric service must now meet the ‘restricted criteria’.

The form on Sirona’s website lays out the specific criteria children and young people must now meet to access the service. This has been blasted as ‘crisis criteria’ by families accusing Sirona of kicking mental health difficulties in the city’s children and young people down the road for later.

A video featuring interim deputy director of operations at Sirona, Lorraine McMullen explaining more about the new system has been posted on Sirona’s website.

In it she reveals that the community paediatric service is no longer meeting the statutory expectations for children in care or those with Special Educational Needs and Disabilities (Send) – nor the 18 week target for new assessment.

January 2023 figures show that there were 1552 children and young people waiting for an initial paediatric assessment with 7386 waiting for a follow up.

McMullen said “compared to other services across the UK the thresholds of our current referral criteria are lower and are we accepting a higher proportion of referrals. Waiting list initiatives and non-recurring money have helped to bridge the service Gap over the past year.”

“Doing nothing,” she says “is not an option.”

McMullen said on the video: “With the support of the wider system we are changing our referral criteria to ensure most vulnerable children and those children and young people most in need can access our community paediatrics and autism service. This has been a very difficult decision to take. We are working towards a go live date of March the 1st.

“The new criteria is a needs-based approach with a robust triage process and has been clinically led. From March the 1st children and young people will only be accepted into these services if autism is suspected and associated needs are causing the child or young person significant functional difficulties despite wider appropriate support. Children and young people whose referral date was before March 1st would be seen. And children whose date of referral is after March the 1st will be triaged using the new criteria.

“The plan – The changes will enable us to improve outcomes for children and young people with the most clinical need and vulnerability. Whose condition is having a considerable impact on their daily lives. The new approach will ensure a shorter wait for those most in need. It will also ensure the services meet our statutory and legal responsibilities for SEND and children in care.

“The new criteria will also offer Bristol North Somerset and South Gloucestershire more in line with other areas of the country which will ensure a more consistent equity of access.

“How will we monitor the impact of these changes? There has been a robust quality impact assessment of the changes to ensure equity of service. This was based on clinical evidence presented by senior clinicians. It has also had formal approval from the ICB.

“The impact of these changes will be monitored in terms of the number of referrals to these services and other services. Such as therapies and school nursing. And we are also developing a reporting dashboard to capture and monitor both the quantitative performance metrics such as referrals discharges and caseload and also wider clinical audits.

“We will also continue to request feedback from our stakeholders through surveys and focus groups and we know from our patient carers that families want clear and transparent information even when it’s not the news they were hoping for. We will share the current waiting times and the letters Center families and we’ll be exploring other ways of making this information available.

“So from a pediatric service perspective here is a list of the children that will be accepted onto our waiting list:

• Education placement breaking down or have a temporary education placement

• Children whose family is at risk are breaking down. Children and young people on a child protection plan or a child in need plan

• Children in care – including our unaccompanied Asylum Seekers

• Children aged 17 for ADHD assessments only

• Children involved with the youth offending team or police

• Preschool children with very low levels of communication where autism is suspected

• Children have been who’ve been diagnosed with attention deficit disorder and are on medication referred for ongoing management

• Referrals due to motor function will also be accepted apart from assessments of Developmental Coordination Disorder or dyspraxia

• And we will also see children with a neural disability with feeding issues or epilepsy and children with Down Syndrome and children with visual or hearing impairment

“Children referred for an autism assessment will also be accepted if their education placement at risk of breaking down despite appropriate support, including:

• Those who are not in education
  
  
• Children whose family unit is at risk of breaking down despite support from appropriate agencies
  
  
• And where parent carers and social care are unable to meet the child’s needs leading to a risk of a child protection procedures and or a child needing alternative placement

• And this will also include children with adoption if that’s at risk of breaking down
  
  
• Children in care are on a child protection plan where an autism assessment is needed for example to inform placement planning
  
  
• Children who are open to CAMHS with severe and enduring mental health difficulties
  
  
• Children who are engaged with youth offending services or in repeated offending behavior
  
  
• And children with low levels of communication where difficulties are likely to be associated with autism and they’re usually early years children
  

“What do these changes mean for children young people and their families? The service will focus on improving outcomes for children and young people with the most clinical need and vulnerability whose condition is having a considerable impact on their daily lives. The new approach will ensure a shorter wait for those most in need in the future. However impact on waiting times will take a two years due to the backlog. Children do not require a diagnosis to have their needs around skills and settings. And the wait for the outcome of diagnostic assessment must not delay children receiving that appropriate provision.

“If a child does not meet the criteria parents and carers and the referrer will receive a letter containing information about how other services may be able to provide a needs-based assessment with recommendations on how to meet the child’s need without requiring a diagnosis. This could include school nursery, college, children’s centres, health visitor or Universal Health Services. We have new pages on our website to ensure families and professionals can access information regarding support and sign posting.

“How are we informing people about these changes? “we’re adding clear criteria guidance and information on our website. This will include this video for our website to explain the changes to our families along with some frequently asked questions. We are setting up a help desk which will go live as families are informed to enable them to get in touch with any queries or access for a sign posting support.

“Every child who has been referred to the autism or Community pediatric service will receive a letter. And we’re aiming for this to be in the weak commencing of the 20th of February. This will detail the changes and let families know how this affects them. it will also include contact details of the help desk. we are sharing webinars and briefings with Partners including GP schools and SendCos locally. Along with local authorities parent care groups to ensure everyone is informed of the new criteria and how it affects their their child’s referrals.”

Changes to community paediatrics were traceable through Sirona board meeting papers. Minutes for a September 2022 meeting shows that ICB system agreement was sought by Sirona to ‘help address the clinical capacity challenges across the community paediatric services with a number of options being developed.’

Papers say that the waiting ‘continues to grow’ citing ‘high numbers of referrals’ as one of the reasons as well as ‘several clinical vacancies’.

In October 2022, Bristol City Council’s joint Send re-inspection took place following work on a Written Statement of Action after inspectors had found five areas of ‘significant weakness’ in the city’s Send provision back in 2019.

HMI Lead Inspector Phil Minns, alongside CQC Inspector Sarah Smith, found that the previous inconsistencies in the timeliness and effectiveness of identification and assessment of children and young people with Send was no longer a weakness in October 2022, with sufficient progress found to have been made.

They wrote: ‘Leaders are taking steps to reduce the waiting times for neurodiversity diagnosis and Child and Adolescent Mental Health Service (CAMHS) assessments. For example, a team of occupational therapists, speech and language therapists and educational psychologists have been introduced to review children in schools and ensure that school staff and other professionals are trained to offer strategies to children and families.

‘In addition, a range of support has been introduced for children and young people and their parents and carers who are waiting for CAMHS appointments,
such as a telephone advice line, some of which were developed in partnership with parents and carers.’

But families have told us that they are still waiting for many months for CAMHS appointments, upwards of a year.

“There’s nothing there for us when we’re waiting,” one parent told us. There might be something for a couple of weeks here. Or a couple of weeks there. But it’s nothing substantial. When you have a child that depressed anyway, they aren’t going to just walk into some temporary thing with people they don’t know. We’re talking about traumatised and suicidal children here. Mine isn’t the only one. There’s loads of us really struggling.”

Another parent told us: “It’s a nightmare isn’t it? We don’t know if we’re coming or going with this new criteria. They’re having a laugh and our children are the joke.”

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