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Parent-carer group raise funds for judicial review against Integrated Care Board over autism assessment criteria changes

A parent-carer-led campaign group has raised more than £5,000 with a view to bringing a judicial review challenge against the Integrated Care Board (ICB) of Bristol, North Somerset and South Gloucestershire over changes to the autism assessment criteria.

Access for Autism said it had “deep concern” over the changes made by the ICB, which is the organisation responsible for the day-to-day running of the NHS in the area.

Acting on behalf of the group, specialist law firm Rook Irwin Sweeney said a letter before claim had been sent and a “response is due by 26 April”.

The new Integrated Care Board agreed a policy in February which meant that children would only be assessed for autism and receive a formal diagnosis if their circumstances, health or family situation is in crisis.

The new assessment criteria is as follows:

  • Children and young people whose education placement is breaking down despite appropriate support
  • Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies
  • Children and young people in care or on a child protection plan for whom an assessment is needed 
  • Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) or children who are not open to CAMHS but are presenting with a serious risk to self or 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)

On its Crowd Justice page, Access for Autism said: “As parents and carers of children with autism, we know first-hand 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.

“That is why we are launching this campaign to raise funds to bring judicial review action against the Integrated Care Board. We need to hold them accountable for their actions and ensure that they provide fair and equal access to autism assessments for all who need them.”

The campaign group have already reached their £5,000 fundraising target in order to engage specialist law firm Rook Irwin Sweeney.

In the letter before action, the following grounds of claim were submitted:

  1. Failure to consult
  2. Breach of Public Sector Equality Duty
  3. Failure to consider relevant information/failure to follow NICE Guidelines/NHS Operational Guidance
  4. Irrationality
  5. Unlawful failure to adhere to statutory duties under NHS Act 2006 and NHS Constitution
  6. Breach of Human Rights Act

The letter went on to say: “We request that, within 14 days, the defendants:

  1. Remove the new Autism assessment criteria introduced on 1 March; and
  2. Confirm they will review funding for the autism assessment services with a view to increasing investment within the service next financial year to alleviate pressure within the system.
  3. Confirm they will review the new NHS England operational framework guidance and commission an autism assessment service that is compliant with the framework.”

Sirona Care & Health and Bristol, North Somerset and South Gloucestershire ICB 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.

“Our priority is always to ensure the best possible care for our children and young people but faced with a dramatic increase in demand for referrals in recent years, in common with other parts of the country, we have taken a clinically-led decision to prioritise access for children whose needs are greatest."

They added: "Alongside this, over the coming months we will undertake a system-wide review of services, working with partners to ensure neurodiversity is recognised and understood and the needs of children can be met without requiring a medical diagnosis.

“We will continue to work with parents and carers as we carry out this review and will continue to monitor the new criteria and consider what adjustments may be necessary.”

Lottie Winson
A&M Bacon