Transforming adult ADHD support in Sussex

Overview

An adult ADHD referral service pilot in Sussex is reducing assessment waits for eligible adults from up to five years to around two-to-four weeks, while building sustainable local capability and a clearer route for patients and GP practices.

Key results

• 2,440 referrals and 970 completed assessments within the first 4 months. 
• Waiting times reduced from up to five years to up to four weeks from referral to assessment for eligible adults.
• 98 per cent of patients said they would recommend the service.
• Significant reduction in GP referrals to Right to Choose from those within the pilot. 

What the system faced

Adult ADHD access is a national NHS challenge, with rising demand, long waits and increasing pressure on specialist services and primary care. Across Sussex, referrals for adult ADHD assessment had tripled over five years with more than 15,000 adults on SPFT’s ADHD assessment and titration waiting list, and some adults waiting over five years for assessment.

For patients across Sussex, this meant long periods of uncertainty, limited support and repeated frustration. Many people were navigating a confusing mix of local NHS, Right to Choose and private routes, with variable quality, prescribing and shared care arrangements. People who struggled to navigate complex pathways, digital processes or external provider options were at risk of being left behind.

For GP practices, the previous position created uncertainty and workload. Practices were often left managing repeated patient queries, clinical risk, unclear referral options and frustration about long waits. For specialist services, rising demand made it harder to focus capacity on people with more complex needs.

The system needed a model that could reduce waits, improve quality and patient experience, strengthen shared care, reduce inequity in access, and create a sustainable local NHS route, rather than relying on fragmented external pathways.

What the system did

NHS Surrey and Sussex ICB, Sussex Partnership NHS Foundation Trust (SPFT), Sussex Primary Care Provider Collaborative, people with lived experience and VCSE partners joined together to create ADHD Primary Care Connect. The pilot model operates across three different Sussex places, each with its own GP federation, practice context and delivery arrangements, but held together by shared standards, shared resources and specialist oversight.

The primary care-led, specialist-supported pathway combines triage, assessment, diagnosis, medication initiation and titration where appropriate, as well as holistic support, shared care and follow-up for adults whose needs can be safely supported locally. 
The pilot model brings specialist oversight into neighbourhood delivery through local GP federation hubs in Brighton and Hove, Crawley and Hastings.

SPFT acts as lead provider, holding contractual and governance accountability and providing specialist training, supervision and escalation. Sussex Primary Care Provider Collaborative coordinates delivery across the three GP federations, helping maintain one consistent and scalable model. GP federations deliver the local pathway through neighbourhood hubs.

Key elements of the model

1. Local, primary care-led assessment and support

Eligible adults are seen through GP federation hubs in Brighton and Hove, Crawley and Hastings. This shifts appropriate care closer to home and gives GP practices a trusted local NHS route with clearer criteria and simpler referral options.

2. Specialist governance, training and escalation

SPFT provides the specialist clinical governance, training, supervision and escalation arrangements that make local delivery safe. More than 90 practitioners have been trained, including GPs, occupational therapists and mental health nurses. Training includes UKAAN and bespoke SPFT training, with ongoing supervision from specialist neurodevelopmental consultants.

3. Care coordination and holistic support

Every patient has a named care coordinator to help them navigate the pathway, complete forms, attend appointments, understand next steps and access support. Care coordinators can link people to psychoeducation, peer support, coaching, practical advice, wellbeing support, workplace or study resources and local organisations where appropriate. People who do not receive an ADHD diagnosis are still offered guidance and support rather than being left with no next step.

4. Lived experience and primary care design

People with lived experience shaped the pathway, service name, language, patient information, assessment preparation materials and wider support offer. Their input helped ensure communications were clear, neuro-affirmative and trauma-informed, explaining what would happen before, during and after assessment and how people could ask questions, take breaks or use sensory items during appointments.

Primary care feedback also changed the model. When practices said the first referral process was difficult to complete during a live consultation, the service responded with practical referral options, including Ardens forms within clinical systems, email summaries and online referral routes.

Results and benefits

ADHD Primary Care Connect is already delivering measurable improvement in access, patient experience and system flow. In its first five months, the service received 2,440 referrals and completed 970 assessments across Brighton and Hove, Crawley and Hastings, demonstrating both the scale of demand and the additional capacity that can be created through collaborative primary care delivery.

Current waits are around two to four weeks from referral to assessment for eligible adults, with a further wait from assessment to titration when medication is appropriate. This compares with previous waits of up to five years for some patients. The service is also supporting people from the existing SPFT waiting list, with an agreement to take 1,500 of the longest-waiting suitable patients this year.

Access and experience

• 98 per cent of patients said they would recommend the service.
• 98 per cent rated their overall experience as good or excellent.
• Satisfaction with wait time scored 9.1 out of 10.
• Patients rating the assessment as thorough scored 9.4 out of 10.

Patient feedback describes the model as personal, conversational, thorough and caring. Feedback from people who had experienced other assessment routes highlighted that the Sussex pathway felt more in-depth and less transactional.

A more complete pathway

The impact is broader than just speed. The pathway gives people information while they wait, support to prepare, a named contact, and a clear set of next steps after assessment. Patients can discuss medication, holistic support or both. This makes assessment a route into understanding and support, not simply a yes/no diagnosis.

Benefits for practices and specialist services

For GP practices, the pathway provides a trusted local NHS option, clearer eligibility criteria and simpler referral routes. For SPFT, it releases specialist capacity for patients with more complex needs. For the wider system, it builds local capability, improves quality oversight, strengthens shared care and reduces reliance on fragmented routes.

Scale and sustainability

ADHD Primary Care Connect was designed as a neighbourhood model that can be standardised, adapted and spread. It is already operating across three different Sussex places, each with its own GP federation, practice context and delivery arrangements, but held together by shared standards, shared resources and specialist oversight.

The service has produced the practical tools needed for spread, including a shared SOP, delivery partner resource pack, GP referral guidance, communications toolkit, patient information, feedback mechanisms, website content, GP webinar materials, clinical handbooks, care coordinator resources and a standardised reporting framework. This means other neighbourhoods would not need to start from scratch.

Sustainability comes from building local NHS capacity, not creating a short-term assessment workaround. The model trains and supports local clinicians to deliver safe ADHD assessment and care in primary care, with ongoing specialist supervision. This keeps expertise within Sussex and reduces reliance on scarce specialist capacity or fragmented external provision.

Continuous evaluation supports future sustainability. The pathway has a benefits realisation model, evaluation checkpoints and a reporting dashboard covering access, throughput, patient experience, safety, equity, workforce, digital enablement and shared care. This gives partners a robust basis for learning, improvement and future commissioning decisions.

The model is already informing future Sussex development, including wider rollout, extension to 16–18-year-olds, autism assessment and support for cohorts who currently fall between pathways, such as perinatal patients, university students, people with private diagnoses seeking NHS treatment, people without stable shared care arrangements and people affected by provider closure.

The model is also changing referral behaviour. Targeted engagement through GP federations has contributed to a significant reduction in GP referrals to Right to Choose for eligible patients within the pilot areas, with some practices reducing referrals for this cohort to zero. This shift towards the local NHS pathway is an important part of the model’s longer-term sustainability.

Advice for other systems

Build the pathway around people, not organisations. The strongest model is one where commissioning, specialist governance, local delivery, lived experience, VCSE support and primary care practice realities are incorporated from the start.

Create a complete pathway, not just extra assessment capacity. Assessment matters, but patients and practices also need clear information, preparation support, care coordination, medication pathways, shared care and meaningful support after assessment.

Balance local flexibility with shared standards. The Sussex model works because each hub can respond to its place, while using a consistent SOP, governance, training, communications, patient information and reporting framework.

Invest in primary care capability with specialist support. Local clinicians can safely deliver more care closer to home when training, supervision, escalation and governance are built into the model.

Use data and lived experience together. Access, throughput, patient experience, equity, safety and shared care measures need to sit alongside patient and practice feedback so the pathway can keep improving.

Further information

For more detail about this case study, contact:
Katherine Saunders, 
Managing Director, Sussex Primary Care Provider Collaborative
katherine.saunders2@nhs.net