This petition was submitted during the 2019-2024 parliament

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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.

More details

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.

This petition is closed This petition ran for 6 months

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Parliament debated this topic

This topic was debated on 6 February 2023

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.

Read the response in full

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

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: https://publications.parliament.uk/pa/cm5802/cmselect/cmhealth/21/2102.htm

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: https://committees.parliament.uk/work/1026/treatment-of-autistic-people-and-individuals-with-learning-disabilities/news/156533/mps-call-for-ban-on-admission-to-longterm-institutional-care-for-autistic-people-and-individuals-with-learning-disabilities/

What is the Health and Social Care Committee?

The Health and Social Care Committee scrutinises the work of the Department of Health and Social Care and its associated public bodies. It examines government policy, spending and administration on behalf of the electorate and the House of Commons. It's a cross-party committee and is independent of the Government.

Find out more on their website: https://committees.parliament.uk/committee/81/health-and-social-care-committee/

You can get updates on their work by following the Committee on Twitter:
https://twitter.com/CommonsHealth

This is a ‘select committee’. Find out how Select Committees work:
https://www.youtube.com/watch?v=o_2RDuDs44c

You can also sign up to the UK Parliament newsletter for the latest information on how to get involved and make a difference: https://learning.parliament.uk/en/your-uk-parliament-newsletter-sign-up-form/

Government urged to strengthen draft Mental Health Bill by parliamentary committee

A group of MPs and members of the House of Lords has published a report looking at the Government's draft Mental Health Bill. They have called for changes to the draft Bill to address rising numbers of people detained under the Mental Health Act and to tackle racial inequalities.

Specific changes the report calls for include:

  • The creation of a new statutory Mental Health Commissioner to monitor mental health reforms
  • Including respect for racial equality in the Bill
  • Improving how data on detentions under the Mental Health Act is collected and monitored
  • Abolishing Community Treatment Orders for civil patients
  • Strengthening duties regarding community services for people with learning disabilities and autistic people
  • Giving patients who are or have been detained the right to request an advance choice document is drawn up

The report was produced by the Joint Committee on the Draft Mental Health Bill, a cross-party group of MPs and members from the House of Lords that was appointed to consider the Government's draft Bill to reform the Mental Health Act 1983

What is a draft Bill?

A draft Bill is published to enable 'pre-legislative scrutiny', which is the detailed examination of an early draft of legislation. This is done by a parliamentary select committee before the final Bill is drawn up by the Government.

What happens next?

With the publication of its report the Joint Committee’s work is finished.

The Government now must respond to the committee's report, and draw up a final version of the Mental Health Bill. It is up to the Government when to publish a final version of this Bill, and introduce it in Parliament.

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Share your views on waiting times for ADHD and ASD (autism) assessments

The MPs on the Petitions Committee have scheduled a debate on this petition and the following petition:

Elliot Colburn MP, a member of the Petitions Committee, has been asked to open the debate.

Share your views

To inform the debate, we would like to hear from you about:

  • your experience of being diagnosed with, waiting for, or seeking an assessment for ADHD or ASD (autism)
  • your experience of having a child who has been diagnosed with, is awaiting an assessment for, or you suspect may have ADHD or ASD (autism)
  • your views on waiting times for ADHD and ASD (autism) assessments

You can share your views with us by completing this survey: https://forms.office.com/Pages/ResponsePage.aspx?id=nt3mHDeziEC-Xo277ASzSpMLsAawCSdBvMh9cdt5o9ZUNUVSOVBSTEtSMDVDRlRTSzFGSlVTUTBFTC4u

The survey will close on Wednesday 25 January at 10am.

Your responses will be anonymous. A summary of responses will be published on the Parliament. It will also be shared with MPs and may be referred to in the debate or within other parliamentary documents. Please don't share anything that may identify you.

Watch the debate

The debate will take place on Monday 6 February at 4.30pm.

What are petitions debates?

Petitions debates are ‘general’ debates which allow MPs from all parties to discuss the important issues raised by one or more petitions, and put their concerns to Government Ministers.

Petition debates don’t end with a vote to implement the request of a petition. This means that MPs will not vote on changing indefinite leave to remain fees at the end of the debate.

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MPs debate waiting times for ADHD and ASD (autism) assessments

The Petitions Committee scheduled a debate in the House of Commons on the petition you signed. This took place on Monday 6 February 2023. A member of the Committee, Elliot Colburn MP opened the debate.

Read a summary of our survey results, watch the debate and access other relevant material:

What did you tell us about ADHD and ASD (autism) assessment waiting times?

To inform the debate, we conducted a survey to hear from you about people's:

  • experience of being diagnosed with, waiting for, or seeking an assessment for ADHD or ASD (autism)
  • experience of having a child who has been diagnosed with, is awaiting an assessment for, or you suspect may have ADHD or ASD (autism)

  • views on waiting times for ADHD and ASD (autism) assessments

  • Read a full summary of the survey results

What are petitions debates?

Petitions debates are ‘general’ debates which allow MPs from all parties to discuss the important issues raised by one or more petitions and put their concerns to Government Ministers.

Petition debates don’t end with a vote to implement the request of a petition. This means that MPs will not vote on changing indefinite leave to remain fees at the end of the debate.

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Sign up to the Your UK Parliament newsletter for the latest information on how to get involved and make a difference.

MPs ask Government about action to reduce waiting times for ADHD and autism assessments

MPs on the Petitions Committee have written to the Minister for Mental Health and Women's Health Strategy to follow up on issues raised during the debate on the petition you signed.

Catherine McKinnell MP, the Chair of the Petitions Committee, and Elliot Colburn MP, who opened the debate on the petition you signed, have asked the Government for further information about the action it is taking to reduce waiting times for ADHD and autism assessments, including:

  • the Government's pilot tests for improvements in diagnostic pathways and their plans to create a data dashboard on ADHD assessment and diagnosis
  • what the Government is doing to ensure that every integrated care board has an executive lead and what steps they are taking to improve training for educational and medical professionals on how best to diagnose and support neurodiverse people
  • the Government’s plans to create a data dashboard to collect national data on ADHD, including a timeline for its creation

The Government has been asked to reply by Thursday 23 March. We’ll share the Government's response with you when we receive this.

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Government provides update on action to reduce waiting times for ADHD and autism assessments

Last month MPs on the Petitions Committee wrote to the Minister for Mental Health and Women's Health Strategy to follow up on issues raised during the debate on the petition you signed.

The Minister for Mental Health and Women's Health Strategy Maria Caulfield MP has responded, giving further information about what plans by the Government and NHS to reduce waiting times for ADHD and autism assessments, and tackle related issues. She said:

  • NHS England is looking at ways to improve the quality of diagnosis for girls as part of their wider work on improving autism assessment pathways
  • The Government are currently scoping how best to improve data on ADHD assessment waiting times, to help improve access to ADHD assessments in a timely way and in line with the NICE guideline.
  • NHS England is developing statutory guidance for Integrated Care Boards in relation to Executive Lead roles including the lead role for Autism and Learning Disabilities.
  • From 1 July 2022 Care Quality Commissioner (CQC) registered providers will be required to ensure their staff receive specific training on learning disability and autism appropriate to their role.
  • The Department for Education are providing free SEND-specific training and support through the Universal Services programme, which is designed to reach 70% of schools and FE colleges per year.

Read the Government's full response

Read the Petitions Committee's letter asking for an update on the Government's plans

On 28 February 2023 Catherine McKinnell MP, the Chair of the Petitions Committee, and Elliot Colburn MP, who opened the debate, asked the Government for further information about the action it is taking to reduce waiting times for ADHD and autism assessments and improve support, including:

  • the Government's pilot tests for improvements in diagnostic pathways and their plans to create a data dashboard on ADHD assessment and diagnosis
  • what the Government is doing to ensure that every integrated care board has an executive lead and what steps they are taking to improve training for educational and medical professionals on how best to diagnose and support neurodiverse people
  • the Government’s plans to create a data dashboard to collect national data on ADHD, including a timeline for its creation

Read the Committee's letter

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Sign up to the Your UK Parliament newsletter for the latest information on how to get involved and make a difference.