Closed petition Hold a Public Inquiry into pre and post diagnosis ADHD support.

The UK Government has recognised the need to improve NHS care for neurodivergent people, with some waiting for 7 years for assessments.

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Despite NICE Guidelines recommending holistic and shared treatment plans for each individual, medication is often the only option provided.

People with ADHD are 5 times more likely to attempt to take their own life.

1 in 4 women with ADHD has attempted to take their own life.

ADHD has only been recognised by NICE since 2008.

Years long lists are leaving people extremely vulnerable to exploitation.

The BBC Panorama episode of 15 May 2023 sensationalised the desperation of people with ADHD into a 29 minute ‘exposé’.

This has left people questioning their diagnosis with no follow up support. The Government must take action.

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Government responded

This response was given on 4 December 2023

We have no current plans to hold a public inquiry into pre and post diagnosis ADHD support. We expect ICBs to commission healthcare in line with clear NICE guidelines to improve diagnosis and support.

Read the response in full

The Department acknowledges that some people are experiencing long waits for an assessment of attention deficit hyperactivity disorder (ADHD) and access to support. We recognise that it is vital that people not only receive a timely assessment and diagnosis, but also that they receive the support they need before and after this in order to live fulfilled lives.

We have no current plans to hold a public inquiry into how ADHD assessments and pre- and post-diagnostic support are managed. The Health and Care Act 2022 requires Integrated Care Boards (ICBs) to commission and provide health care services in collaboration with their partner NHS and Foundation trusts, for their population, based on local area needs. It is for ICBs to decide how services are funded in their area. It is a statutory requirement for ICBs to ensure that the public are appropriately involved in planning, proposals and decisions with regard to the commissioning arrangements for health services.

The National Institute for Health and Care Excellence (NICE) is the organisation that provides guidelines for assessing and managing ADHD (‘Attention deficit hyperactivity disorder: diagnosis and management -’). NICE guidelines are developed by experts based on a thorough assessment of the available evidence and extensive engagement with interested parties. They represent best practice and healthcare professionals are expected to take NICE’s guidelines fully into account in the care and treatment of individual patients. NICE guidelines were updated in 2019 to highlight the importance of recognising ADHD in women and girls. NICE keeps its guidelines under active surveillance to ensure they reflect changes in the evidence base and clinical practice.

We expect all ICBs and NHS trusts to take NICE’s ADHD guidelines fully into account when commissioning and providing services, to improve the assessment and diagnosis of ADHD, and the quality of care and support that people receive.

Making a diagnosis can be complex because there is no physical test for ADHD (such as a blood test). The NICE guidelines do not recommend a maximum waiting time between referral and an assessment for ADHD. However, the NICE guidelines recognise the importance of people being able to access support to manage their symptoms and live well with ADHD. The NICE guidelines recommend that people with ADHD should have a comprehensive treatment plan that addresses their needs and highlights the importance of healthcare providers holding regular discussions with people with ADHD, and their family members or carers, about treatment planning.

Assessments, diagnosis and the provision of support for people with ADHD are carried out in various care settings. Data on the number of people waiting for an ADHD diagnosis and how long they have been waiting is not collected nationally but may be held locally by NHS Trusts or ICBs. We are exploring options for improving data collection and reporting on ADHD assessment waiting times. In line with this, the National Institute for Health and Care Research (NIHR) has recently commissioned a research project to provide initial insights into local ADHD diagnosis waiting times data collection. Improving data on ADHD will be an important first step in determining where further action may need to be taken to support people.

We also recognise the importance of early identification of neurodiverse conditions, such as ADHD, so that an individual’s needs can be identified sooner, and support put in place earlier in life. This includes the support that children with ADHD should receive. On 2 March 2023, the Department for Education published the Special Educational Needs and Disability (SEND) and Alternative Provision Improvement Plan. This set out the government’s vision to improve mainstream education through setting standards for early and accurate identification of need, and timely access to support to meet those needs. In addition, the SEND Code of Practice is clear that schools and colleges should put in place support for children and young people where they have identified a need. There is no need to wait for a formal diagnosis of a condition such as ADHD.

We are committed to reducing the number of lives lost to suicide. The Department published a new national five-year suicide prevention strategy for England this year, which sets out the Government’s ambition for suicide prevention, together with over 100 actions that we think will deliver this. We have set an ambition to reduce suicides within 5 years, with initial reductions observed within 2.5 years. The strategy is supported by a wide range of activities the government is funding and that will support people’s mental health. This includes at least an additional £2.3 billion a year into mental health services by March 2024 compared to 2018/19.

Department of Health and Social Care