When GPs across Essex began to withdraw from Shared Care agreements for ADHD medication in late 2024, thousands of patients suddenly found themselves navigating a very different reality. For many, prescriptions that had once been issued routinely by their local GP came to an abrupt halt. What followed was uncertainty, stress, and in some cases, crisis.
(A Shared Care Agreement is an arrangement where a GP and a specialist agree to share responsibility for prescribing and monitoring of medication.)
Our latest report captures the experiences of people affected by these changes. Their stories paint a clear and troubling picture: lives put on hold, wellbeing undermined, and families forced to make impossible financial choices.
Almost nine in ten people whose GP had stopped prescribing told us they had experienced increased stress or anxiety as they tried to understand who, if anyone, would continue their care. One respondent explained, “The sudden withdrawal of support has left me feeling destabilised and uncertain about how to maintain continuity of care.”
For more than three-quarters of those affected, the situation has been even starker – they ran out of medication entirely. People described the devastating effect this had on their ability to function, study, or work. As one respondent put it, “ADHD medication is not just a prescription – it’s a vital part of how I manage my focus, executive function, and overall wellbeing. Without it, I’ve experienced depression, lack of motivation and anxiety about my job.”
Families told us they are now facing private costs of up to £300 a month just to maintain access to essential medication. This has left many feeling trapped between financial hardship and the risk of being unable to work or study. “I rely on my medication to help me work and be functional,” one respondent said, “but I cannot continue to take money away from my family’s needs for private care.”
The way these changes were implemented has also raised concerns. Over half of respondents reported receiving a month’s notice or less before their GP stopped prescribing, with some told only when they tried to renew their prescription. Almost four in ten said no arrangements had been made for their ongoing care. The lack of communication and coordination left people feeling abandoned, unsure of where to turn next, and forced to advocate for themselves in systems they already found difficult to navigate.
For young people, the impact on education was particularly acute. Parents described children left without support during critical exam periods, unable to focus or revise effectively. One mother reflected, “Without her medication, my daughter cannot study.” Adults told us of careers jeopardised, relationships strained, and mental health spiralling under the weight of uncertainty. Even healthcare professionals reported being left without the medication that enabled them to care for others.
Louisa Stokes from Brentwood, who has been directly affected, shared the impact it has had for her, “I was waiting to get my diagnosis and I had moved from Tower Hamlets to Brentwood. I didn’t want to leave the waiting list, because at that point, I’d been on it for five years. As soon as I got my medication and I was on a dose where I was stable, I told the hospital and they said it was fine, I just needed a shared care agreement. When I emailed the doctors because I was low on medication they told me they didn’t do it. So I emailed the hospital in Tower Hamlets and they said ‘sorry, you’re out of the borough now, we can’t help’. So I didn’t know what to do. They had told me I needed this medication but then taken it away.
“Even though I lived 30 years without it, once you’ve had the medication you start to see what it is like to be able to function. When you take it away, you feel like you’ve lost your arm. When I wasn’t on it, I realised just how much it did do. It really helped me order my thoughts. I was so depressed. I didn’t know how to get it back or what to do. They told me to go back on the waiting list again which was two years long at that point. But I already had my diagnosis and had found my perfect dose, all I needed was access to the medication. At that time, there was a lot of anger and frustration; a lot of tears. All I wanted was for someone to listen to me.
“I got in touch with Healthwatch Essex and they helped me get access to the medication again. I wouldn’t have it back if it weren’t for finding Healthwatch. I understand that there is a lot of demand but if shared care agreements have to stop and you are going to take something away from someone who needs it, at least have something in place before you do that.”
Joe Pearce, Research Officer at Healthwatch Essex, who led the research, said: “This report highlights the profound impact on people’s lives when continuity of care is suddenly withdrawn. ADHD medication is not a luxury; for many, it is what enables them to study, to work, and to manage daily life. The stories we’ve heard show the urgent need for clarity, compassion and consistency in how care is delivered.”
“The withdrawal of Shared Care agreements has left too many people without the treatment they need, at costs they cannot sustain, and in a system that too often feels impenetrable. What patients are asking for is simple: clear communication, fair access, and recognition that their medication is essential to their health and wellbeing.”
Brian Balmer, Chief Executive of the Local Medical Committees, said: “The lesson for us is that we can always improve communication with patients and that our recommendation to give three months’ notice does not always succeed. The situation is improving as regards increased provision through specialists, and prescribing routes are also developing.”
A spokesperson from Psychiatry UK said,: “We are fully committed to delivering the best level of care for our patients – from assessment through to diagnosis and treatment. When a GP withdraws from a shared care arrangement, we have a clear and safe process in place to ensure patients continue to receive the care they need. GPs are required to notify us and support the smooth transfer of care. Patients are informed promptly, and a new prescriber is assigned to ensure there is no disruption to ongoing treatment. We are sorry to hear that this hasn’t happened for the case studies mentioned in this report and while the individuals remain anonymous, we would urge them to get in touch directly so we can look into this for them. Moving forward, we have offered our support and a direct line to Healthwatch Essex’s Information and Guidance service to support any patients who might be experiencing similar issues. Patient care is our number one concern, and we value the efforts of organisations like Healthwatch Essex who share our ambitions for improving mental health services in England.”
Tom Abell, CEO of Mid and Sound Essex ICB said: “I want to thank Healthwatch Essex for this excellent report, whilst it isn’t easy reading, it is a vital piece of work to highlight the experience of people all across Essex and to spur us on to find local actions to improve the way that local NHS services work.
“I can only imagine how worrying this period has been for patients, loved ones of services users, and many NHS staff members. Making sure people in need can access services is why all of us in the ICB joined the NHS – so, my message to those living with ADHD, or waiting for assessment is that we see the very real issues you are facing in accessing support and we are determined to do what we can. I am pleased to say we have made a start on this here in Mid and South Essex already.
“Whilst these issues are being seen across the country, there are things we can do to improve local services and we have already taken action to mitigate some of the recent changes, this has included an additional £1.9 million into local services to help stabilise them and to incentivise better collaboration, we have also worked closely with these services and those affected to ensure that there has been minimal interruption of the care that they receive.
“However, there is still more to be done, and this report sets out 11 recommendations which we welcome. We are looking at introducing new ways in which people living with ADHD can be supported through GPs and the voluntary and community sector alongside core NHS community services. We are doing this work in collaboration with partners in local communities, local government and the education sector so that support is provided in the right place and the right time – this work includes the creation of a new stakeholder group to co-design new treatment pathways, how we can demystify the way the current system works through additional training for professionals alongside better care navigation for service users and changing the way the current service works to become less diagnostic driven towards meeting need earlier when this is identified.
“Whilst we can’t fix everything, we will remain focused on this work and we will continue to keep listening to the voices of service users. Our aim is to create an NHS that works for all parts of Essex, regardless of whether this is in Southend or Harwick, Averley or Harlow, and I would welcome repeating this exercise in the future so we can understand whether the actions we are taking are making the difference they need to.”
You can read the full report and recommendations here and fuller commentary from some of those quoted above here.
You can also listen to the impact this change has had on one individual’s working life in a recent episode of Healthwatch Essex’s Hidden Voices podcast. Heidi, a police officer who found that the medication she was prescribed under Shared Care enabled her to concentrate and work more effectively, discusses how she was unable to afford the cost of private prescriptions and became worried about her performance at work, particularly in high-stakes situations such as giving evidence in court. Listen to the full story here.
Our colleagues at Healthwatch Suffolk have also completed a similar piece of work in Suffolk. This can be found here.