Private ADHD & Autism Assessments in Scotland: Navigating NHS Highland’s Shared-Care Refusal, Postcode Disparities & England’s Right to Choose

Tracey Cleary
Aug 23
6 min read

Updated: Sep 2

The landscape of ADHD diagnosis and treatment in Scotland has become a focal point of debate—especially after NHS Highland’s recent refusal to accept shared-care agreements for patients diagnosed through private services. This decision raises urgent questions about accessibility and continuity of care for adults and children seeking support. In contrast, other NHS boards in Scotland adopt more flexible approaches, while England’s “Right to Choose” policy offers an altogether different framework. This post will unpack these dynamics, highlight their real-world implications, and point you toward advocacy, self-advocacy, and practical next steps.

Understanding ADHD and the Importance of Diagnosis

Attention Deficit Hyperactivity Disorder (ADHD) is a lifelong neurodevelopmental condition marked by inattention, hyperactivity, and impulsivity. Accurate diagnosis—whether in childhood or adulthood—is critical. It not only validates lived experience but also opens doors to evidence-based interventions that can dramatically improve quality of life, educational and occupational outcomes, and social relationships.

Growing NHS waiting lists have driven many Scots to seek private assessments—but without a recognised NHS pathway, obtaining ongoing medication and support becomes a significant hurdle.

The Impact of Delayed Diagnosis

Delays in diagnosis can have profound effects. Many individuals experience frustration and confusion as they navigate their symptoms without proper support. This can lead to a cycle of self-doubt and anxiety. Recognising ADHD early can help mitigate these issues, allowing individuals to thrive rather than merely survive.

Scotland’s Shared-Care Gap

In Scotland, GPs are contractually obliged to share care only with NHS specialists—not private clinicians. As of late 2022, NHS Highland has flatly refused shared-care for privately diagnosed ADHD and autism, citing concerns about the quality and consistency of external assessments and worries that private services may close without ensuring long-term follow-up care.

By denying shared-care, NHS Highland effectively limits patients’ access to essential medications and support, forcing them to navigate a fragmented system fraught with re-referrals and lengthy waits. This situation creates a sense of helplessness among those seeking help.

Navigating the System

Navigating the healthcare system can be overwhelming. Individuals may feel lost, unsure of where to turn for support. It’s crucial to understand your rights and the available resources. By advocating for oneself and seeking out information, you can take steps toward securing the care you need.

A Postcode Lottery of Policies

Policy divergence across Scotland means your postcode can dictate whether your private diagnosis is honoured:

NHS Lothian operates a formal shared-care protocol solely between its specialist teams and GP practices. Privately diagnosed patients must first obtain an NHS assessment to trigger GP prescribing under that agreement.
NHS Greater Glasgow and Clyde has embraced shared-care arrangements in collaboration with accredited private providers, smoothing transitions from private diagnosis to NHS-funded treatment.
NHS Tayside follows SIGN-aligned shared-care for children and young people: specialists initiate and stabilise treatment before GPs assume routine prescribing and monitoring. Adult pathways, however, remain constrained.
NHS Fife and several other boards decline adult ADHD referrals unless reconfirmed by an NHS psychiatrist, compelling privately assessed patients to re-enter NHS waitlists from scratch.

Understanding Your Rights

It’s essential to know your rights regarding healthcare access. Understanding the specific policies of your local health board can empower you to advocate for yourself effectively. This knowledge can help you navigate the complexities of the system and ensure you receive the care you deserve.

England’s “Right to Choose” Advantage

England’s NHS empowers patients through the “Right to Choose” policy. If local waits for ADHD or autism assessments exceed 12 weeks, you can select any accredited provider commissioned by your Integrated Care Board—NHS-funded and free at the point of use. GPs are then obligated to refer and accept shared-care agreements with that provider, guaranteeing continuity from diagnosis to medication management.

This patient-centred model minimises postcode-based disparities and accelerates access to care. The contrast with Scotland’s system highlights the need for reform.

The Benefits of a Patient-Centred Approach

A patient-centred approach fosters trust and collaboration between patients and healthcare providers. It encourages individuals to take an active role in their care, leading to better outcomes. By empowering patients, the healthcare system can become more responsive to their needs.

Wales & Northern Ireland: Emerging Frameworks

Wales is piloting a “Right to Choose” for autism assessments, with plans to extend eligibility to ADHD in the near future.
Northern Ireland’s Trusts vary: some accept accredited private reports for shared-care, while others demand full NHS re-evaluation before prescribing.
No unified UK-wide framework exists yet—but advocacy groups like ADHD Scotland and the National Autistic Society continue to press for consistent shared-care standards across all nations.

The Role of Advocacy in Reform

Advocacy plays a crucial role in pushing for necessary reforms. By raising awareness and advocating for change, individuals and groups can work towards a more equitable healthcare system. This collective effort is vital in ensuring that everyone has access to the care they need.

Safeguarding Your Assessment Journey

Review your local health board’s private-diagnosis and shared-care policy online.
Raise shared-care needs during your initial GP appointment—request written confirmation of any decision.
Consider registering with an English GP if you qualify for “Right to Choose.”
Leverage template letters and appeals support from ADHD Scotland, ADHD Aware, and the National Autistic Society.
Keep clear records of assessments, correspondence, and prescribed treatment to streamline any transfers.

Staying Organised

Staying organised is key to navigating the healthcare system. Keeping detailed records of your assessments and communications can help you advocate for yourself more effectively. It also ensures that you have all the necessary information at hand when seeking support.

Role of Advocacy and Support Groups

Advocacy and peer-support organisations are lifelines:

ADHD Scotland offers guides on navigating NHS pathways and template letters for GP appeals.
ADHD Aware provides the most up-to-date breakdown of “Right to Choose” eligibility and process.
National Autistic Society extends similar resources for autism, many of which apply equally to ADHD and comorbid cases.

By amplifying patient voices, these groups lobby for policy reform and equitable access to care across all health boards. Their work is invaluable in creating a more supportive environment for individuals seeking help.

Building Community Support

Connecting with others who share similar experiences can be incredibly beneficial. Support groups provide a space to share challenges, successes, and resources. This sense of community can foster resilience and encourage individuals to continue advocating for their needs.

The Mental Toll in Scotland

Endless waiting, repeated refusals, and postcode-lottery policies inflict real psychological harm:

Chronic anxiety, hypervigilance, and rumination over each referral outcome.
Feelings of invalidation when privately obtained diagnoses are dismissed.
Isolation and shame from having to re-navigate trauma alone.
Burnout and hopelessness chasing shared-care agreements across different boards.
Eroded trust in healthcare systems, making future help-seeking more daunting.

Acknowledging these impacts is the first step toward self-compassion and resilience. It’s essential to recognise that these feelings are valid and that seeking support is a crucial part of the healing process.

Finding Ways to Cope

Finding healthy coping mechanisms can help mitigate the mental toll of navigating the healthcare system. This may include mindfulness practices, therapy, or connecting with supportive friends and family. Prioritising self-care is vital in maintaining mental well-being during challenging times.

Conclusion

NHS Highland’s refusal to accept shared-care for private ADHD and autism diagnoses starkly contrasts with more flexible policies elsewhere in Scotland—and with England’s transformative “Right to Choose.” As demand for assessments continues to rise, Scotland faces a critical choice: entrench postcode-based barriers or adopt patient-centred frameworks that honour private diagnoses and ensure continuity of care. Until then, individuals and families must arm themselves with knowledge, advocacy support, and self-advocacy strategies to navigate this complex terrain.

Taking Action

If you find yourself in this situation, remember that you are not alone. There are resources available to help you advocate for your needs. By taking action and seeking support, you can work towards securing the care you deserve.

References

Scottish Intercollegiate Guidelines Network. SIGN 112: Management of ADHD. https://www.sign.ac.uk/
NHS Highland. ADHD (Guidelines) | Right Decisions. https://www.nhshighland.scot.nhs.uk/
NHS Lothian FOI Response: GP Shared Care Agreements.
NHS Tayside. Shared Care Protocol for ADHD Medication. https://www.nhstayside.scot.nhs.uk/
NHS England. Right to Choose: ASD & ADHD Assessment Pathways. https://www.england.nhs.uk/
Welsh Government. Right to Choose Pilot for Autism Assessments. https://gov.wales/
ADHD Scotland. Support & Resources. https://adhdscotland.org.uk/
ADHD Aware. Right to Choose Guide. https://adhdaware.org.uk/
National Autistic Society. Navigating Assessments. https://www.autism.org.uk/

10. ADHD Direct. Why Your GP May Not Agree to Shared Care for ADHD. https://adhddirect.org.uk/