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ICB raises autism referral threshold to cut waiting list

ICB raises autism referral threshold to cut waiting list
By Jess Hacker
29 March 2023

A south west ICB has signed off new referral criteria for its children’s autism and community paediatrics services, which it expects will cut the number of people eligible for referral by around 60%.

Bristol, North Somerset and South Gloucestershire ICB approved the new needs-led criteria – which will see a higher threshold set for accessing the services – in a bid to reduce its ballooning waiting list.

In a letter sent to stakeholders from the service provider, Sirona care & health, its operations director acknowledged that ‘on average 40% of the current referrals will meet this criterion’ for autism and community paediatric services, with the National Autistic Society stating it is ‘deeply concerned’ about the update.

The new six-point criteria – due to affect all referrals made after 1 March 2023 – will mean children will only be referred for autism assessment if: their education or family is breaking down, have ‘very low levels of communication’, are a high risk to themselves or others, are involved in youth offending, or are in a child protection plan.

Sirona, the community interest provider, also advised stakeholders that if a child does not meet the criteria, parents or carers and the referrer will receive a letter containing information about how other services may be able to provide needs-based support, with recommendations on how to meet the child’s needs without requiring a diagnosis.

The ICB told Healthcare Leader it has taken the clinically-led decision to prioritise access for children with severe needs to tackle the ‘dramatic increase in demand for referrals’.

A spokesperson from the ICB and Sirona said: ‘We recognise that parents and carers have concerns about the referral criteria changes and we’re sorry if this has caused additional anxiety for families.’

There are currently 2,792 children on the waiting list across the ICB’s footprint: a 350% increase in two years. An additional 1,638 children are in the triage process, with children who are currently being assessed having waited more than two years.

But campaigners have said the new needs-led approach is ‘unfair’ and will ‘exacerbate’ issues accessing care, resulting in fewer children getting the support they need.

Assess for Autism, a parent-carer-led campaign group, has launched a fundraiser – which has garnered more than £4,000 – to bring judicial review action against the ICB.

The money raise will be used to seek advice from a solicitor and barrister on ‘the merits of challenging the new criteria and sending pre-action correspondence to the ICB’.

The National Autistic Society said the new criteria highlights the ‘postcode lottery for services and poorly commissioned pathways for autism assessments’.

Tim Nicholl, its head of influencing and research, said: ‘Without significant, long-term funding for diagnosis services across the country, many autistic people will continue to face traumatic long waits for an assessment. As a result, many will be left struggling without the right support at school, work and home.

‘The Government must urgently invest in diagnosis services, as set out in the national autism strategy for England, and make sure that autistic children, young people, adults and their families get the support they need.’

As many as 140,000 people are waiting for an autism assessment nationally as of December 2022, NHS data indicates: a 40% increase in the number of people waiting in just one year.

ICB chief executive Shane Devlin discussed allocation based on equity and need in an interview with Healthcare Leader last month.

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