I am unsure on where to go and who to talk to: the impact of the end of shared care for ADHD

Healthwatch Essex wanted to understand the impact on people with ADHD of GPs withdrawing from shared care agreements for ADHD medication.  They undertook a survey to which 70 people responded.

57% of people previously prescribed medication told us their GP was ending prescribing and monitoring of ADHD medication. 63% of adults previously prescribed medication were affected, compared to 40% of children. Suffolk and North East Essex was worst affected, with two thirds of those on medication affected. All respondents who had previously been on Shared Care in SNEE were affected. 

78% of those on Shared Care with private specialists were affected. These respondents said they now faced costs of up to £300 a month to return to the private provider for prescriptions, and those who could not afford these costs faced long waits for new assessments with Right to Choose or NHS providers. 

88% of those affected said they had experienced increased stress or anxiety due to uncertainty about care. Respondents said that the stress, uncertainty, and difficulty navigating care was negatively affecting their mental health, wellbeing, and relationships. 

76% of those affected said they had run out of medication. This was affecting people’s ability to study for exams and performance at work. 

Those affected told of the lack of notice and poor communication about the changes from providers: Over half were given one month’s notice or less, and 39% said that no arrangements had been made for their ongoing care.