I want to know, I want a diagnosis, I want help

Healthwatch York undertook an independent review of a pilot project for a new ADHD and autism assessment pathway for adults implemented by Humber and North Yorkshire Health and Care Partnership. Via a HWY survey, GP survey, conversations with York residents and health professionals, and two focus groups, they gathered the views of those who have completed the profiler, and those involved in supporting people through the pathway. In total, they heard from 1,144 people.

The findings show a disconnect between the experiences of those going through the pathway and the healthcare professionals involved in delivering the pathway. Healthcare professionals welcome a straightforward and direct referral pathway for people seeking an autism and/or ADHD diagnosis. However, they acknowledge people’s want to be referred onto a waiting list (regardless of the wait times); be provided with practical and meaningful support; be able to utilise their legal right to choose - all of which were denied to people as a result of this pilot.

There is a shared desire from healthcare professionals and patients to move to a needs-led model of support, but this is at odds with the current health and social care systems in place, and with the existing stigmas that those with autism and ADHD traits experience. NICE guidance, NHS England guidance, and legislation exists to help commissioners and providers navigate these challenges.

Although the limited quantitative data provided by HNYHCP reports that the Do-It Profiler was ‘easy to use’ and ‘useful’, Healthwatch York’s qualitative data shows that too many people were under the assumption that the Do-It Profiler was the assessment of their possible neurodivergence, and the next stage would be a referral for diagnosis. Many reported that they weren’t sure if they had been referred for a diagnosis, and what the purpose of the profiler was.

Communication of the pathway has been poor throughout its design and implementation both to people seeking diagnosis and those working in the health and care system. As a result, use of the profiler doesn’t seem to have been consistent across primary care.

Many have approached Healthwatch York, YDRF, local and national campaign groups to express their frustrations around the pathway’s failure to address health inequalities. Women said the pathway prevented them from accessing a diagnosis in later life for traits that weren’t recognised as they grew up. Another person said that, without a diagnosis, they were being challenged when applying for disability benefits. This raises concerns that the pathway could increase the risk of poverty for disabled people.

The report contains recommendations and an initial response from HNYHCP.