Closed petition Create an emergency fund for ASD (autism) & ADHD assessments

The Government should create an emergency fund to deal with the massive waiting lists for autism & ADHD assessments for children AND adults. This would provide resources for local health services deal with current waiting lists and new patients.

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The waiting lists for these assessments are massively long up & down the country. In some areas children and adults have to wait years for an assessment. This can cause great distress to those on waiting lists and their families. It's time neurodevelopment is taken seriously. The effects of late diagnosis are well documented. Children diagnosed earlier perform better in school, they are less likely to develop mental health issues later in life. Adults left to wait for such long periods are more likely to develop mental health issues. These are just a few benefits of early diagnosis.

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Government responded

This response was given on 14 December 2021

We are investing £13 million this year to tackle long autism diagnosis waiting times and are supporting children with Attention Deficit Hyperactivity Disorder throughout the diagnostic process.

The National Institute for Health and Care Excellence (NICE) guideline ‘Autism spectrum disorder in adults: diagnosis and management’ states people should be waiting no longer than 13 weeks between a referral for an autism assessment and a first appointment. The NICE guideline does not recommend a maximum waiting time for the whole diagnostic pathway, recognising that making a diagnosis can be complex and involve a range of different professionals and agencies.

With respect to assessments for Attention Deficit Hyperactivity Disorder (ADHD), the NICE guideline ‘Attention Deficit Hyperactivity Disorder: Diagnosis and Management’ does not recommend a maximum waiting time between first referral and a first assessment for ADHD. However, Clinical Commissioning Groups and National Health Service trusts should have due regard to this NICE guideline, which aims to improve the diagnosis of ADHD, the quality of care and support that people receive.
We want every area to meet NICE guidance for autism assessments, but we recognise this is not happening everywhere. Anecdotal evidence suggests this is largely driven by increased demand for diagnosis services due to growing awareness and recognition of autism over the past few years.

To gain a better understanding of waiting times across the country, we started collecting and reporting data on waiting times for autism diagnosis in November 2019. The latest data from September 2021 indicates that 13% of patients who had been referred for an initial appointment got this within the 13 weeks recommended by NICE. This data is being used by NHS England and Improvement to inform their work to improve waiting times at a local level. We understand that the COVID-19 pandemic may have also made waiting times longer in some areas, because some local systems paused or delayed their diagnosis assessments.

To tackle long waiting times for autism assessments, we are already taking a number of actions as set out in our new national autism strategy, ‘The national strategy for autistic children, young people and adults: 2021 to 2026’. As part of the NHS Long Term Plan, we are investing £2.5 million in 2021-2022 to test and implement the most effective ways to reduce autism diagnosis waiting times for children and young people, in England.

In recognition of the impact of the pandemic, as part of the COVID-19 Mental Health and Wellbeing Recovery Action Plan we are also investing an extra £10.5 million in 2021 – 2022 to test ways of improving diagnostic pathways and to identify those on waiting lists at risk of crisis. The funding we are investing this year will help us develop a better understanding of which diagnostic pathways work and reduce the amount of time people have to wait for their assessment, with the aim of improving pathways across the country. We are also significantly expanding an early identification pilot, based in Bradford, which involves health and education staff working together in schools to assess children who are suspected to be autistic. Over the next 3 years, we will be expanding this to at least 100 schools.

With regard to ADHD, the NICE guideline sets out a number of recommendations regarding the organisation of child health services, child and adolescent mental health services (CAMHS) and adult mental health services to support children with ADHD. As part of the NHS Long Term Plan, together with Local Authority children’s social care and education services as well as expert charities, NHS England and Improvement will jointly develop packages to support autistic children and children with ADHD and their families throughout the diagnostic process.

Given the extra funding we are providing this year to address long waiting times, we do not consider that a separate emergency fund for autism and ADHD assessments is needed at this time. Our assessment is that the best way to tackle long waiting times is by improving data and reporting and by increasing investment into existing streams of core funding for the NHS, rather than creating a separate fund. This is because we want local systems to have a full understanding of the extent of waiting times and full ownership over action to address waiting lists.

Department of Health and Social Care

Other parliamentary business

MPs report on treatment of autistic people and people with learning disabilities

Last July, the Health and Social Care Committee published a report that looked at the treatment of autistic people and people with learning disabilities.

The Committee found that a lack of adequate community provision has led to many experiencing unnecessary admissions to inpatient facilities, where they often face inadequate treatment and conditions.

Read the full report:

Among its recommendations, the Committee said that the Government should:

  • Assess the cost of providing community support for all autistic people and people with learning disabilities, and provide investment which matches these costs

  • Redesign financial incentives so local authorities do not seek to ‘offload’ autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities

  • Ban new long-term admissions of autistic people and people with learning disabilities to institutions, except for forensic cases

  • Put in place a strategy to increase early diagnosis with measurable outcomes

Read more about the report, including a comment from Jeremy Hunt MP, Chair of the Committee:

What is the Health and Social Care Committee?

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