Living with ADHD: people's experiences of changes to ADHD shared care in Suffolk

Healthwatch Suffolk undertook research on the impact of GPs withdrawing from shared care agreements for ADHD medication.  They undertook a survey to which 87 people responded.

Most people received a few months’ notice before their shared care stopped. Eight people had not been notified at all, or were unclear.

The most common issues (reported by 63% of respondents) were increased stress and anxiety caused by uncertainty regarding their future care arrangements and a lack of information about which service/professional would become responsible to manage it with them. Problems with medication, like delays or running out completely, were also commonly reported.

Some people reported that GPs lacked knowledge of referral pathways, including how to access Right to Choose, or were hesitant to use them. Others were advised against referral or told it was unnecessary, particularly in adulthood. Some people were denied a referral based on feedback from schools or because the GP did not know them well enough. As a result, people needed to repeatedly request referrals, follow up on missed paperwork, or seek private assessment when NHS referral had not been provided.

Nine people experienced delays in their ADHD assessment process due to administrative errors or inefficiencies. Common issues included lost paperwork, referrals not being sent or followed-up, and long delays in communication between GPs and Right to Choose providers. Some referrals were mistakenly assumed to have been made, only for people to discover months later that no action had been taken.

The referral systems were described as disjointed, paperwork-heavy, and time-consuming – requiring individuals to fill in the same forms multiple times or manage complex steps without support. Patients were left to coordinate the process themselves, including chasing updates, organising assessments, handling administrative tasks and trying to find available medication, which they found overwhelming and inaccessible.

The most common issue reported within feedback was long wait times for an ADHD diagnosis, particularly through the NHS.  Thirty-four people (44%) had experienced long delays ranging, from nine months to over six years. Several individuals were still waiting or had not reached the first stage of screening. Due to long NHS wait times, 19 people (24%) felt forced to seek private ADHD assessments. Some described waiting years without progress, leading them to pay out-of-pocket for diagnoses and treatment.

While private diagnosis helped some patients to bypass lengthy NHS waiting times, 25 people (32%) found it difficult or impossible to access NHS care or medication afterwards.

Thirty-two people (41%) described receiving limited support, particularly from their GP. It was noted that GPs typically provide prescriptions directed by ADHD services but offer little else. Some people were told that if they could not access, or did not need medication, there was nothing available for them.

Ten people (13%) described gaps in ADHD care, where some patients were sent in circles, discharged without support, or struggled to access what they needed. A few noted that mental health services or GPs were unsure or untrained in ADHD, which meant they failed to recognise or manage it, especially in cases where people had multiple health conditions, for example perimenopause.

Delays in accessing medication caused people to feel stressed, overwhelmed, and sometimes led to breakdowns in mental health. Two people noted that they had felt suicidal. Waiting sometimes led to job losses, dropping out of school or university, and financial strain.