Healthwatch York has today (3 August 2023) published a report outlining people’s experiences of the new ADHD and autism assessment pilot.
The pilot, which was recently extended by nine months, initially ran from 27 March to 27 June 2023 and was implemented by the Humber and North Yorkshire Health and Care Partnership. The pilot took place across York and North Yorkshire.
Healthwatch York’s report, ‘ADHD and Autism Pilot Pathway: An independent assessment’, found significant issues with the piloted approach. The pilot directed everyone to an online tool, the Do-It Profiler. Only those who met specific criteria were referred for further assessment. Everyone else was provided with a report and signposted to online resources. For these people, there was no further healthcare contact or support.
Healthwatch York worked with York Disability Rights Forum (YDRF) to get feedback and heard from 245 people. People reported that the new approach was inaccessible for people who are not online or need help to fill in forms. Many people who did not meet the criteria felt abandoned and believed they have to be in crisis or a risk to others to warrant a diagnosis and treatment or support. The report also raises concerns that the pilot approach may contravene equality legislation and current guidance.
Emily Douse, Deputy Manager at Healthwatch York, said: “In response to concerns raised about the pilot, we saw the need to listen, capture and share this feedback and worked with YDRF to do this.
“We heard from people who are extremely distressed and feel abandoned by the system as a result of the pilot. Their experiences must be heard as part of the pilot evaluation and factored into future plans for the service. We are looking forward to working with the Health and Care Partnership to make sure this happens and that all future pilots and new services meet equality legislation and national guidance."
“We are pleased to hear some things are changing and will continue to capture the experiences of people and professionals for the rest of the pilot.”
Hilary Conroy, from York Disability Rights Forum, added: "The voices of those who are impacted by this pilot have been shared powerfully in this vital report; we urge people to read the experiences of those who are living with its consequences.
"Once again, we believe NHS leaders are making decisions behind closed doors without the input of the people affected. We urge them to listen to, and openly communicate with the people they are there to serve. Our community deserves better than this."
Healthwatch York encourage people to continue to share their experiences of the pilot via our short surveys:
For people trying to access a referral: https://www.smartsurvey.co.uk/s/YorkAADHDPathway/
For health and social care professionals: https://www.smartsurvey.co.uk/s/VY0L8Y/
The full report, ADHD and Autism Pilot Pathway: An independent assessment, and an executive summary are available at: https://www.healthwatchyork.co.uk/wp-content/uploads/2023/08/Independent-evaluation-pilot-pathway.pdf
For more information about the work of Healthwatch York visit: www.healthwatchyork.co.uk.
Our Feedback Centre is now live. Share your experiences of health and social care services in York here: http://www.healthwatchyork.co.uk/services/
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