Recognising ADHD: how to improve support for people who need it

Healthwatch England undertook research to support the NHS England ADHD task force.  They undertook nationally representative polling and a qualitative survey, reaching 5628 people in total.

The impact of ADHD on people’s lives can be profound. Our findings on those diagnosed reveal significant negative effects on work performance (63%), mental wellbeing (56%), household management (57%), and relationships (44%). There are also impacts on those undiagnosed. 

An ADHD diagnosis can change people’s lives, giving them a better understanding of themselves (84%), improving their ability to manage their mental health and wellbeing (58%), improving their self-esteem (54%), and helping them to concentrate at work or while studying (47%). 

However, people are experiencing long waits, pushing them to pay for private assessments. This, in turn, creates a two-tier system based on the ability to pay for care. Nearly half (45%) of those waiting for an assessment who responded to our poll had been doing so for over a year. 

There are hidden waits for ADHD referrals. Along with long waits for assessment, people shared stories of referral delays and a reluctance to seek support due to long waits. 

People want support while waiting for an ADHD assessment but most aren’t getting any. Just under two-thirds (63%) of people in our poll waiting for an ADHD assessment want support to manage their mental wellbeing, while over two in five (44%) want a single point of contact. However, almost two-thirds (64%) of people with an ADHD diagnosis said they received either no information or poor information whilst waiting for their assessment. 

People with ADHD or suspected ADHD can be reluctant to speak to their employer about support. Only one in five (19%) people in our poll had done so. Reasons for not telling their employer included worrying about possible implications for their job and not thinking that changes would make a difference. However, almost two-thirds of people (64%) who had told their employer were offered at least one reasonable adjustment to support them.

To improve access, provide more consistent support to people waiting, and build capacity for specialist hospital teams to deliver more complex care, we have called on NHS decision-makers to: 

1. Move ADHD assessments to the community. This includes providing NHS teams with the training and resources they need to deliver care closer to people’s homes. This shift will require collaboration between NHS, social care, education, employment and criminal justice stakeholders. 

2. Review National Institute for Health and Care Excellence (NICE) ADHD guidance to reflect this shift to more care delivered by general psychiatry and GP teams, as well as explore future prescribing of first-line medication from non-hospital settings.

 3. Provide better support to people waiting for ADHD assessments, including keeping people updated with clear and accessible communication from the NHS. 

4. Collect and publish official data on ADHD assessment waiting times, including demographic data, to understand and address health inequalities. 

5. Improve employers' support for those with ADHD by raising awareness and proactive offers of reasonable adjustments and expanding support provided through the Access to Work scheme.