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Restrictive Criteria for Bristol Autism Assessments – An 18 Month Mess in the Making

  • Sirona Care and Health along with the Bristol, North Somerset and South Gloucestershire Integrated Care Board, spent 18 months on a plan to stop all children and young people from accessing autism assessments. The plan would have seen 75 per cent of referrals rejected. It was abandoned just two months in. Here’s how it went down.

Earlier this year, Bristol children and young people being referred for an autism assessment, suddenly found doors closed to them. It was the result of a hugely damaging series of restrictive criteria introduced by Sirona Care and Health surrounding who was allowed an autism assessment. The gatekeeping of the diagnostic process, caused upset and outrage, culminating in legal action by Bristol families.

Papers surrounding the decision making by Sirona, have been released to us under the Freedom of Information Act. It did take over 7 months for the information to be released. Sirona explained that the extensive delays were down to the wait for ‘director sign off’ authorising the release of the information.

A similar request we made to Bristol City Council for the correspondence between the Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) and Hugh Evans and Stephen Peacock was refused.

Bristol City Council also refused to release a simple list of board meetings and other meetings for BNSSG Integrated Care Board (BNSSG ICB) and Sirona attended by Stephen Peacock and Hugh Evans.

Looking through the papers released by Sirona are very much like watching a disaster unfold in slow motion. A decision taken at some point in the mid to later stages of 2021 to bring about restrictive criteria to autism assessments through a ‘needs led’ approach would turn out to be a costly mistake. It saw some 18 months of planning, staff capacity, meetings, preparation, public facing events run by external professionals and external service designers – all of which had to be funded.

An Internal document – Sirona Care and Health – Children’s Services – Community Paediatrics & Autism Criteria Change – Information & Assurance Pack – v6, by the Associate Director of Children’s Services dated 21/03/2023, shows the timeline of decisions, spanning from 28 September 2021 to the final decision in January 2023.

The document said the community Paediatric and Autism services were experiencing ‘increasing referral rates in all areas’ with the ‘complexity’ of the referrals increasing. This was leading to ‘challenges’ across the service to meet the number of requests.

‘Demand is significantly outstripping capacity and doing nothing is not an option,’ it warned.

The Sirona document said that the threshold of the then current referral criteria was ‘lower’ than other services in the UK. This was leading to a ‘much higher’ number of referrals.

Over two years, there was a reported 350 per cent increase in the numbers of children and young people waiting for an autism assessment. At the date of the document, there were 2,792 children in Bristol, North Somerset and South Gloucestershire waiting for an autism assessment. Children who were being seen then had already been waiting two years, with the wait time expected to grow.

An ‘exponential’ rise in complaints and concerns regarding delays was causing Sirona some consternation. Their longer term work would therefore focus on ensuring ‘neurodiversity is understood and recognised with needs met without a medical diagnosis.’ This work would be funded by money going to a Waiting List Initiative.

It all started with a Needs Led Transformation Workshop held at the end of September 2021. The initial meeting, run by Mace and Mentor, was attended by representatives from Health, the Local Authority and Parent Carer Forums from the BNSSG area. At this point, there was no mention of bringing in the restrictive criteria, instead relying on clumsy information and opinion gathering.

One participant told us that not only was it a ‘waste of time’ it ‘wasn’t autism friendly’ and seemed to be ‘beloved by the kind of people who enjoy time-wasting team building meetings with no sensible direction. We designed bridges. Hopes and prayers.’

By May 2022, an ‘ASD Demand-Capacity data and Options paper’ was presented internally to the Head of Transformation SEND, ahead of it being submitted to the CCG Clinical Executive Committee on 09 June.

In the same month, a meeting between Sirona and the North Somerset Parent Carer Forum, took place ‘to discuss proposed changes and acceptance criteria’. Sirona says that other meetings with the Parent Carer Forum also took place, with further details surrounding these meetings ‘requested.’

In June 2022, The CCG Clinical Executive Committee Seminar – Autism and ADHD, outlined the’ short-term solution of changing criteria and long-term aspiration to move to needs-led approach. Minutes for this meeting are ‘not available’ and Sirona says the email train ‘indicates a decision was not made at this meeting’ but it was the ‘start of dialogue’

The BNSSG CCG Clinical Executive Seminar, showed that it was considering signposting children and young people who may be autistic not meeting the ‘new proposed threshold’ to services such as Off The Record. This service is specifically for young people with mental health difficulties and is not set up for long term intervention for autistic children in crisis.

Suggestions also included Families in Focus FIF. South Gloucestershire Council says to be eligible for support from FIF, the young person must be struggling in three areas, which includes things like substance misuse, crime, family relationships and exploitation. It is not an autism specific service, with neurodivergence being examined through a child protection lens.

No consultation with the public at this point had taken place. Sirona said that parent carer representatives had been involved at various points – specifically North Somerset Parent Carers.

This meeting took place in the time period that Bristol City Council officers and senior leadership team and some BNSSG CCG officers were monitoring the social media of Bristol Parent Carer members.

This led to a decision to block access to future funding and forum members were not able to attend co-production meetings.

Being one of the people who had been part of the Bristol Parent Carer Forum at the time, my own social media activity was being monitored by a Senior Performance Manager at the BNSSG CCG as well as senior officers at Bristol City Council – whose names I have redacted myself in red.

In June 2022, the Children’s Operational Delivery Board held further discussion around the introduction of restrictive criteria for autism assessments.

Redacted minutes showed that ‘xx advised xx and colleagues have written a paper around possible actions to take in the short-term, such as altering the criteria, addressing those of highest need (red flag criteria), delivering capacity and not simply adding additional young people to a waiting list – however these is no easy answer!’

The action taken to drive forward decisions was also redacted.

In July 2022, the criteria change received support from the BNSSG Children’s operational Delivery Board.

One board member said ‘Knowing this has been discussed in a few meetings, feel like we should now just do it!’

Another said ‘a lot of people want the ‘label’ as it opens doors to benefits…’

The Children’s Leadership Planning Meeting on 15 August 2022, also agreed the new criteria approach, but Sirona says ‘there are no notes of this meeting.’

In the same month, they agreed to re-start triage against the new criteria and develop a communications strategy. But according to Sirona, ‘there are no notes of this meeting’ either.

On 06 October 2022, the Referral Criteria Proposal was shared with Sirona’s Senior Leadership Team. This was now a whole year after the development of the plan was first started. A presentation at the meeting showed there was concern about ‘adverse publicity’ regarding the criteria changes.

Papers for the Children’s Operational Delivery Board on 24 October 2022, showed that the referrals for autism assessments were now over 100 more each month than what the service could cope with. Making changes would allow for Sirona to ‘meet’ its ‘statutory and legal responsibilities for SEND and Children in Care.’

A Quality Impact Assessment for project ‘Autism Assessment Service – Restricted Referral Criteria’ completed on 27 September 2022, had the sign off redacted. It was completed for meetings Extraordinary QIA Panel – Children’s Services – on the 17 and 19 October 2022.

It said that the ‘increasing and unsustainable demand for autism assessments’ would mean a child referred for assessment in September 2022 would be waiting up to five years for their assessment.

The changes to be made would be restricted to assessments only for children and young people ‘whose presentation is suggestive of autism and who are experiencing significant functional impact.’

This would be:

  1. Children 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
  2. Children whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the child’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.
  3. Children in care or on a child protection plan for whom an ASD assessment is needed (e.g., to inform placement planning). Details of the impact of the children and young people’s needs at home or placement and how this relates to suspected Autism.
  4. Children who are open to 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). For children and young people not open to CAMHS, we would expect the
    referrer to make an additional referral to services such as CAMHS or Social care to address child’s immediate needs.
  5. Children who are involved with Youth Offending Services and/or are engaged in repeated offending behaviours.
  6. Children with very low levels of communication where the difficulties are likely to be associated with Autism

It further said that ‘Restricted criteria will enable clinicians to focus on children with the highest level of need, improving access and timeliness of assessments. Following a recent triage process using the proposed criteria it is estimated that 25% of referrals will be accepted.’

But risks included: ‘Children not accepted for a specialist autism assessment may not have their needs fully recognised and may not receive appropriate and timely support in school/setting.’

Emails following the Children’s Operational Delivery Board in October, which pushed for criteria changes, also predicted that these changes might create ‘noise in the system’. This was following ‘much noise’ made regarding the removal of an on-call community paediatricians Out Of Hours rota, which came as a ‘surprise’.

The email also took at swipe at the Bristol Children’s Hospital which Sirona alleges were too ‘reliant’ upon them with some aspects of care and responsibility.

Draft minutes for the Children’s Operational Delivery Board on 21 November, showed that the Commissioning Manager, Strategic Commissioning – Children, Families & Education at Bristol City Council and the Principal Public Health Specialist at Bristol City Council were both in attendance at the meeting.

The forthcoming changes were discussed with Bristol City Council officers present at least three months before the criteria change became public knowledge.

At Members Forum at Bristol City Council on Tuesday 14 March 2023, Councillor Tim Kent asked Bristol Mayor Marvin Rees what conversations have been had with the local authority on the autism criteria change?

Rees replied: ‘While there have been discussions about moving to needs led approach, we are not aware of any formal conversations between Sirona and the Council’s senior leadership team about this aspect of the change.’

Sirona says that in October 2022, Lisa Manson – ICB Director of Performance and Delivery – met with parent carer forums for feedback on the proposed changes. Sirona also says that they are ‘looking for evidence of these meetings’. No parent carer representatives in Bristol at this point had any idea what was coming. The Bristol Forum was still frozen out because of the Send surveillance.

A complex series of papers submitted to Sirona’s SLT on the 07 December 2022, asked for action on system agreement to move to a ‘needs-led collborative transformation programme’.

Sirona’s Comms Plan also showed concern about the backlash they would face once the news became public. There were concerns that families would speak to the press. And, there might be renewed coverage of the ‘Bristol SEND surveillance claims’.

Sirona was prepared in advance for any backlash through their customer service channels. A draft letter responding to complaints had already been prepared months in advance.

The final stages of the restrictive criteria were now coming together in December 2023, with final agreements waiting to be signed off.

A letter went out from the Interim Chief Executive of Sirona Care and Health on 30 December 2022 to the Director of Performance & Delivery BNSSG ICB. It asked for support in three significant ‘interdependent’ initiatives.

This was for funding to extend the Waiting List Initiative to the end of March 2024.

It wanted confirmation that the wider system had removed the need for a medical diagnosis in order that children could access services.

And finally, it wanted ICB support and acknowledgment to finally go ahead with the change in referrals. This would set the restrictive criteria in motion.

On the 16 January 2023, the Interim Chief Executive was forced to urgently chase up a response to her letter, as the Director of Performance & Delivery BNSSG ICB had not responded.

It was not until 25 January 2023, nearly a month from the first letter, that the Director of Performance and Delivery of the BNSSG ICB, Lisa Manson responded. The response was favourable and would now finally see implementation of the restrictive criteria.

A large level of planning went into the development of the restrictive criteria, as well as communication strategies, briefings for MPs, briefings across services and draft response letters for families in anticipation at their complaining about the new criteria.

Despite the 18 months of work by Sirona, the restrictive criteria would only last for less than two months. In all of their planning and preparation, they did not anticipate legal challenge by Bristol parents who came together with national support to see the gatekeeping removed.

In the very first Needs Led Transformation Workshop held at the end of September 2021, then Executive Director of People, Hugh Evans had said – in a video that was shared with us: “I think Bristol especially has got quite a strong history of fighting for equity and human civil rights, social justice and citizenship.”

Prophetic words that Sirona should have paid a little more attention to instead of building bridges.

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