ADHD UK’S REPORT INTO NHS ADHD ASSESSMENT WAITING LISTS

There is significant variations across the country and calamitously long waiting lists across the country.

For children:

•  For children the variation is stark – it varies from 5 weeks to a devastating 5 years. 5 weeks if you are in the area of South London & Maudsley NHS Foundation Trust and 264 weeks (5 years) expected time from Belfast Health and Social Care Trust. A child in Belfast waits 52 times the length of time in Barnsley, South London.
• Belfast has 1,000 children waiting for an ADHD Assessment. It is also where the child has been waiting the longest. They have been waiting 347 weeks (over 6 and a half years). (Belfast FOI response here)

For adults:

•  For adults the variation is equally stark – it varies from 12 weeks at Dorset Healthcare University NHS Foundation Trust to 550 weeks (over 10 years) at the Herefordshire and Worcestershire Health and Care Trust
• The adult waiting the longest has been waiting 443 weeks (8.5 years). There are in Wales at the Hywel Dda University Health Board.

ADHD referral screening is a significant issue.

A number of NHS organisations have instigated screening of individual ADHD referrals. This is where they use various tools to eliminate individuals formally referred to them from their NHS list. Patients do not have a right to a second opinion in the NHS so this effectively removes people from being able to get an
NHS assessment. As a charity we are aware of numerous cases where individuals where removed via screening out and later found to have ADHD.

The screening is happening despite ALL NHS referrals having already been screened due to coming with a professional referral from either a GP or school. A GP is supposed to have agency for their patients. If a GP asks for a test to be done it should be actioned. Individuals cannot self-refer for an ADHD assessment. There is no NICE recommendation or agreed system for ADHD screening in the UK.

•   Women and Girls are more likely to be screened out than Men or Boys. This is despite NICE guidelines specifically noting that Women and Girls are under-diagnosed.
• Where screening is used for adults 32% will be screened out. 33% for women. 29% for men. Women are 16% more likely to be screened out than men.
• Where screening is used for children on average 29% will be screened out. 21% for girls. 19% for boys. Girls are 11% more likely to be screened out than boys.

There is significant variation in ADHD referral screening results across the country. Getting such wide-ranging results is highly suggestive of a flawed system.

• The highest adult screening out percentage is Sheffield Health and Social Care NHS Foundation Trust. In the last full year (2022-2023) they did just 33 adult ADHD Assessments (vs 80 in the pior year). They removed 1060 people from their lists. They removed 97% on average. The prior year they removed 91%. They removed more women than men. 640 women (98%) removed. 420 men (96%) removed.
• The highest child screening out percentage is South Eastern Health and Social Care Trust. Screening out 85% of children on average. Screening out 91% of girls and 80% of boys.
• The lowest is 0% – those who don’t screen. That is the majority of NHS organisations. Only 15% of NHS organisations of those we asked reported screening.(18 of 121 reported screening adult ADHD referrals, 17 of 121 reported screening child ADHD referrals).

The majority of NHS commissioning services don’t know how long ADHD patients are waiting.

We are very concerned that the scale of the ADHD waiting lists is not known.

Our data shows 19,000 adults waiting and 7,200 children waiting. But only 21% of ICBs could tell us their waiting numbers. If we extrapolate for the no-answers then we have 131,000 people waiting for an Assessment. 90,000 adults and 42,000 children. Please note 131,000 waiting is roughly 5% of the estimated 2.6million people with ADHD. This is therefore a permanent problem of inadequate resourcing and not a short term spike.