Northern Ireland ADHD Needs Assessment: Adults “left without care” as charity warns of public health crisis

Carolyn Tailford, Founder, Senior Director and Chair of A Safe Space to be Me.

Adults with ADHD in Northern Ireland are being left without diagnosis, medication and support, according to mental health charity A Safe Space to Be Me, which has responded to the publication of the Department of Health’s long-awaited ADHD Needs Assessment.

The report, published on Thursday, 12 February 2026, by the Department of Health, confirms significant gaps in provision for both children and adults and sets out 19 recommendations to inform the potential commissioning of a regional ADHD service.

However, campaigners warn that without urgent action and funding, the findings risk becoming “another explanation of failure rather than a trigger for change”.

“Life changing and, in some cases, life threatening”

The charity says adults across Northern Ireland are currently facing years-long waits, unclear referral pathways and, in some cases, the withdrawal of medication without alternative care.

“For the adults we support, this isn’t about strategy documents or future planning. It’s about whether they can function, work, parent, and stay alive,” said Carolyn Tailford, Founder, Senior Director and Chair of A Safe Space to be Me.

The organisation states that every week it supports adults who have waited years without confirmation of whether they are even on a waiting list, individuals forced to seek private diagnosis due to the absence of a statutory pathway, and people whose ADHD medication has been stopped without a safe alternative plan.

“This is a public health crisis happening now,” the charity said.

Needs Assessment highlights system under strain

The Attention Deficit Hyperactivity Disorder (ADHD) Needs Assessment provides what the Department describes as an evidence-based review of current provision, stakeholder engagement and learning from other jurisdictions.

Health Minister Mike Nesbitt said:

“This report provides an evidence-based assessment of need to inform future consideration of ADHD services in Northern Ireland.

“It is based on stakeholder engagement, analysis of current provision and learning from other jurisdictions, and is published in the interests of transparency.

“However, it is important to highlight that any future commissioning decisions must be taken in the context of overall affordability, at a time when we face significant funding constraints across health and social care.

“Its aim, however, is to support informed discussion and longer-term planning grounded in evidence and lived experience.”

The report confirms that the absence of a commissioned ADHD service has led to fragmented and inconsistent provision across Trust areas, with long waiting lists and limited adult services in some regions.

It also acknowledges the heightened risks associated with delayed diagnosis and treatment, including mental health deterioration, substance misuse and suicide.

The Minister added:

“I fully recognise the significant impact that the absence of a commissioned ADHD service, and the resulting delays in assessment and treatment, are having on individuals with ADHD and on their families, affecting wellbeing, education, employment and family life.

“The report, however, is clear that there are no cost neutral options for implementing a commissioned ADHD service. Any form of service would require either new investment or the reallocation of funding from other highly pressured areas.

“I am committed to transparency, continued engagement with stakeholders, and to ensuring that future decisions are proportionate, realistic and focused on achieving the best possible outcomes within the resources available.”

The Department has confirmed that the report’s recommendations are now under consideration to identify next steps.

Data gaps disputed by charity

While the Needs Assessment notes limitations in available statutory data, A Safe Space to be Me argues that substantial evidence of unmet need already exists within the community sector.

The charity says it currently holds a database of nearly 1,000 referrals relating to adult ADHD support. This includes diagnosed adults, those unable to access assessment, individuals who believe they are on waiting lists, and people diagnosed privately who are paying for medication or have had shared care arrangements withdrawn.

“The system says the data doesn’t exist. We already have it. We see the harm in real time, in people’s lives, not on spreadsheets years later,” said Carolyn.

Since launching its adult ADHD service in 2024, the organisation states it has supported well over 1,000 people in eighteen months.

Concerns over medication withdrawal and private costs

The charity has also raised concerns about what it describes as a growing number of adults who were stabilised on medication following private diagnosis and are now having treatment stopped without clear clinical justification or a safe alternative care plan.

In practice, the organisation says, this is creating a two-tier system in which access to treatment depends on an individual’s ability to pay.

“We are watching people unravel after having treatment taken away. That is not clinically safe, and it is not acceptable in a public health system,” Carolyn said.

The Needs Assessment itself highlights the rise in private diagnoses, with many families seeking private assessment due to extended waiting times within Health and Social Care services.

Higher prevalence in prisons and economic impact

Among the report’s findings is a significantly higher prevalence of ADHD within the prison population compared to the general public. Data cited indicates prevalence rates of between 17% and 30% among inmates, compared with 2–4% in the wider population.

The assessment also links untreated ADHD to economic inactivity, noting elevated prevalence rates among young people classified as NEET (Not in Education, Employment, or Training).

The report argues that while commissioning a service would require upfront investment, it could reduce longer-term pressures on the justice system, social services and welfare budgets.

Calls for urgent action

A Safe Space to be Me is calling for immediate action in three areas:

1. Safe continuity of treatment – No adult stabilised on ADHD medication should have treatment stopped without clear clinical justification, documented risk assessment, and a safe alternative care plan.

2. Transparency about waiting lists – Adults should be able to understand clearly whether they have been referred, accepted or are actively waiting, consistently across all Trusts.

3. A fair adult ADHD pathway – Assessment and treatment should be based on clinical need rather than income, crisis point or postcode.

“This report must be the start of urgent action, not the end of the conversation. Adults with ADHD have waited long enough,” said Carolyn.

Leadership and lived experience

Carolyn Tailford BEM, Founder, Senior Director and Chair of A Safe Space to Be Me, is a senior accredited pluralistic therapist and clinical supervisor specialising in ADHD, autism, trauma and long-term health conditions.

The organisation has received the Queen’s Award for Voluntary Service the highest honour for voluntary groups in the UK. Carolyn was awarded the British Empire Medal in the 2022 New Year Honours for services to the community.

Her advocacy for systemic reform in ADHD and neurodiversity services continues as the Department weighs the financial and structural implications of implementing a commissioned regional service.