Lobbying to Reduce ADHD Diagnosis Waiting Times

We need to reduce NHS ADHD Assessment Waiting Times and Expand NHS Right to Choose

We need positive change for ADHD in the UK


ADHD UK has spoken frequently in the media about the issues of already awful ADHD diagnosis wait times increasing still further. Of children and adults put in danger. Of lost opportunities and lives due to the failure of our leaders to properly prioritise ADHD.

We are lobbying hard to change the attitude of our leaders nationally and locally, our political leaders, NHS leaders, and organisational leaders.

We have an active Freedom of Information campaign aimed to expose and monitor the failings of many NHS services. To shine a spotlight on their inadequacy and, by repeating the data requests, to hold it there.

We work with our ADHD UK Ambassadors and ADHD UK Changemakers to make a difference. Ambassadors and changemakers work locally to lobby for change. Organised by NHS area they lobby NHS leaders for change, and lobby local MPS, council leaders, schools and medical staff to exert pressure for that change. They come together with us to lobby for national change. Join us and together we’ll succeed.

Goal 1 : ADHD Assessments to be included in the 18 week first-appointment pledge.

The NHS Constitution provides details on waiting times expectations “You have the right to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible. The waiting times are described in the handbook to the NHS Constitution.’. The hand book outlines “start your consultant-led treatment within a maximum of 18 weeks from referral for non-urgent conditions” and requires that if 18 weeks cannot be met: “If this is not possible, the CCG or NHS England, which commissions and funds your treatment, must take all reasonable steps to offer a suitable alternative provider, or if there is more than one, a range of suitable alternative providers, that would be able to see or treat you more quickly than the provider to which you were referred”.

Right now ADHD is falling between two posts. It isn’t considered a consultant led area so the 18-week pledge and rights aren’t applied; however, diagnosis is restricted to relevant qualified professionals by NICE requirements. For example, a GP cannot diagnose ADHD. This means ADHD falling between two areas – faster access through primary care isn’t an option and specialised care isn’t managed for.

We want ADHD Assessments to be included in the NHS 18-week pledge.

Goal 2 : Retain and Expand Right to Choose

Right to Choose has been a lifeline for many. If you’re in England and in an area with a long waiting time, you can exert your current Right to Choose to enable you to access an NHS ADHD Assessment through a formal NHS sub-contractor working to NHS standards. The failure of many areas to adequately resource ADHD Assessment for their populations has led to many pursuing this option. It evens out geographical health inequalities and reminds local NHS Integrated Care Boards and NHS Trusts that they can’t just ignore a condition. Especially not one as substantial and debilitating as ADHD. We have 2.6 million people in the UK with ADHD, and statistics show 1 in 10 men or boys with ADHD, and a terrifying 1 in 4 women and girls with ADHD, will at some point try to take their own lives. Those figures express clearly how hard it is to live with ADHD and yet we allow people to wait years with suspected ADHD before they can access true understanding of their condition and support.

Right to choose has allowed people who were told that they wouldn’t be seen at all or told they’d be seen in years to be instead seen in months. This is to the benefit of all. In Australia, Deloittes measured the cost of ADHD to Australia as $ 20 billion. We know that diagnosis and support can dramatically improve an individual with ADHD’s life and in doing so alter their financial position and potential cost to the state. Deloitte’s work is the start of showing the financial benefit to both individuals and society of timely ADHD Assessments.

At present, Right to Choose is being pushed about via a technicality. The spirit of the law – in the 2018 Mental Health Act – was to allow individuals to seek treatment outside their NHS area and, in doing so, to reduce health inequalities. The letter of the law is that you can only choose an NHS sub-contractor if they have a contract at the Integrated Care Board level. As a result, ICBs are moving contracts from themselves to Trusts. Removing those organisation’s eligibility and effectively removing the Right to Choose. The lifeline is being removed and needs to be protected.

We want the Right to Choose pathway to remain. We want Right to Choose to be an option for individuals regardless of whether a sub-contactors contract is at ICB or Trust level.

We want to expand Right to Choose from being England only to applying in all nations for everyone in the UK.

Goal 3 : We want an ADHD waiting times data dashboard

This is the Autism Waiting Times dashboard created by NHS Digital for NHS England. We applaud this work and want the same for ADHD throughout the UK.

A lack of data is allowing NHS organisations to fail their populations without being held to account. In a recent freedom of information process ADHD UK undertook around three-quarters of NHS organisations could not tell us their ADHD wait times. One organisation told us that due to a lack of data coding in their system it would cost them over £160,000 to find out their wait time. It is outrageous that individuals cannot know how long they should expect to wait for their ADHD Assessment.

Those who could tell us had wildly varying times – from 5 weeks to 5 years for children and from 12 weeks to over 10 years for adults. We know anecdotally that some of those who were unable to tell us their waiting times are even worse, with some effectively refusing to offer an ADHD Assessment to those referred to them. Making their waitlist time one without end. “Democracy Dies in Darkness” is true to the democracy of service in the NHS. We need data to both spotlight success and shine a light on failures.

We want NHS Commissioners to be compelled to commission data collection for all ADHD services.

We want NHS Digital to create a data standard for ADHD Services.

We want NHS Digital to collect that ADHD Assessment data and create a dashboard for it. Enabling local people to see their ADHD Assessment wait time and be able to compare it to the national average and other areas.

How to get involved

We need you to help us make change happen. National change happens at the local level. We’re organising into NHS areas – so you can lobby your area for change. You support our programmes, you have the option to attend monthly “ADHD UK Insider meetings” where we discuss our current programmes and future programmes. You can use those to influence and change our plans. You then get involved in lobbying at multiple levels in your area – your local NHS, your MPS, and your councils to create a successful pincer movement of compounding pressure on decision makers. Councils have particularly strong connections with their local NHS and are often forgotten in lobbying campaigns.

Local Campaigns are led by an individual, or teams of, ADHD UK Ambassadors. You can learn more about the Ambassador program here. If you’re not ready to be an Ambassador but would like to get support locally you can register to be an ADHD UK Change Maker here.