Executive summary
About the report
This report uses evidence from our casework to show how patients are affected by poor and inconsistent commissioning when seeking the assessment and treatment of ADHD and autism.
We looked at 3,000 complaints related to ADHD and autism from the past six years across all stages of our casework process, with a more detailed focus on 95 recent complaints. We also engaged with a broad range of external stakeholders to understand the experiences of patients and how the commissioning system operates.
The report considers the growing tension in strategic commissioning between national ambitions and local delivery of ADHD and autism services. Patients are facing long waiting times, variations in access and fragmented care. At the same time, services must be delivered in a way that is safe, sustainable and affordable. This is all set in the context of rising demand and an expanding provider market operating alongside the NHS. Where these expectations and realities are not well aligned, patients can fall through the gaps.
Our complaint evidence most frequently highlights challenges relating to access, assessment and diagnosis, particularly in ADHD services. However, diagnosis is only one stage in a person’s journey and outcomes depend on the wider system of support available afterwards.
We found that the most common issues reported by patients and families were:
- not being given clear, accessible information about their Right to Choose a provider under the NHS Constitution, meaning they are unaware of available assessment and treatment options, and are disadvantaged when trying to navigate the system
- having to wait a very long time for an assessment for adult ADHD and autism and experiencing significant delays when accessing ongoing care and support (these are commonly reported by advocacy organisations, such as Neurobetter, the National Autistic Society and ADHD UK)
- inconsistent recognition of diagnoses by the NHS following assessments by Right to Choose providers, affecting children, young people and adults
- difficulties accessing medication following diagnosis, including through shared care arrangements where GPs may take over responsibility for prescribing from a specialist
- poor communication and disjointed coordination across providers or between areas.
Challenges we see in the system
Our casework shows that many of the difficulties experienced by patients, clinicians and commissioners are not caused by isolated service failure, but by a series of connected factors. These factors can create a gap between what patients and families are told they should be able to access, and what local systems can deliver. We found that increased demand, reduced funding and workforce pressures can make this situation harder.
Poor information about pathways and waiting times affects patients’ understanding and expectations
Patients, families and carers do not always have access to clear, consistent and up-to-date information about referral routes, waiting times, provider options, patient choice and shared care arrangements. Information can be fragmented across different organisations and systems, making pathways difficult to understand and navigate.
Data on demand, referrals, waiting times and patient need remains incomplete and inconsistently recorded. This can make it difficult for patients, GPs and commissioners to understand the variation in access and waiting times, as well as what level of service patients should reasonably expect.
National guidelines and evidence base have not kept pace with a rapidly changing provider market
ADHD and autism services are increasingly delivered through a diverse mix of NHS and independent providers, which has expanded access in many areas. However, this has created new challenges for commissioners, clinicians and policymakers in ensuring consistent standards, quality and oversight across the system.
Rapid market growth has also coincided with growing use of digital technologies in assessment and other service delivery models. The evidence base and national guidelines have not always developed at the same pace. Variation in assessment approaches and shared care arrangements can contribute to inconsistent experiences and outcomes for patients as well as uncertainty for clinicians.
Gaps in oversight, accountability and coordination create uncertainty for patients and commissioners
ADHD and autism pathways operate within a complex landscape of commissioning, contracting, regulation and patient choice requirements. ICBs must balance local needs, patient safety, financial pressures and commitments to patient choice under the NHS Constitution.
Provider oversight and quality assurance arrangements are not always clear, and there is no consistent view across the system of provider performance, referral activity and emerging risks. This can make it harder for commissioners, clinicians and patients to understand how services are performing and where responsibility lies when problems arise.
Together, these challenges can contribute to variation, uncertainty and delays for patients. Stronger coordination, greater transparency and consistent regulation could support more effective decision-making, improve system learning and help patients navigate pathways with greater confidence.
What needs to change
Reform to the health system, including the 10 Year Health Plan for England, NHS Modernisation Bill and Strategic Commissioning Framework, creates a timely opportunity to address these tensions. We make the following recommendations.
Recommendation 1: New national commissioning guidance and an implementation framework on ADHD and autism are developed to support ICBs to make commissioning decisions that improve patient experience and access to care.
It is important that ICBs understand how their responsibilities in different areas fit together so they can make commissioning decisions that meet the needs of local populations, against a backdrop of rising demand and fewer resources. The Strategic Commissioning Development Programme, led by NHS England, should support ICBs to develop the capabilities and skills to deliver effective ADHD and autism pathways.
Recommendation 2: The evidence base for digital diagnostic technologies is developed and strengthened to support future updates to National Institute for Health and Care Excellence (NICE) guidance on ADHD and autism assessments.
The market for digital and artificial intelligence (AI)-enabled diagnostic technologies is developing rapidly, but the evidence base has not kept pace. It is important that NICE guidelines are informed by robust evidence on the use of digital technology so that ICBs and providers can make effective decisions about the technologies they use to support clinical assessments.
Recommendation 3: Health and Social Care Act regulations are updated so that the Care Quality Commission (CQC) can improve oversight and accountability mechanisms for NHS-funded providers that only deliver ADHD and/or autism assessments.
Improved quality assurance and oversight mechanisms will help increase the visibility, transparency and monitoring of NHS-funded providers and referral pathways.