National Institute for Health and Care Excellence (NICE) – Written Evidence (AAC0367)
Dear Baroness Rock,
Thank you for your letter of 4 June, regarding NICE’s guidelines and quality standards. I am pleased to respond as follows:
What is the process for updating NICE clinical guidelines and ensuring that they reflect the latest evidence on effective approaches to the assessment, diagnosis, support and care of autistic people in all demographic groups, including autistic people with co-occurring physical and mental health conditions?
Topics for new or updated guidance are considered through the NICE prioritisation process. In 2024 we updated our approach to guideline review and update by moving away from a review at fixed points after publication to a more responsive process that reacts to the availability of new evidence, and the requirements of those working in the health and social care sector, when appropriate.
We continue to operate an active surveillance programme. When new evidence emerges, we proactively consider whether existing guidance should be reviewed and, if appropriate, updated. We also work to understand the current needs and priorities of the health and care system, and key stakeholders within it. Decisions as to whether NICE will create new, or update existing, guidance are overseen by an integrated, cross-organisational prioritisation board, chaired by NICE’s chief medical officer
Section 7 of our topic prioritisation manual (PMG46) shows the eligibility criteria that we consider when making decisions on whether new guidance or updates of current guidance are appropriate. When there is not enough information to assess a new topic against the eligibility criteria, it is not progressed further. The new topic can be reconsidered when NICE is alerted that further information has become available.
Autism was considered by the NICE prioritisation board in June 2024 and was prioritised. The decision is here.
You will be aware that the NHS is due to publish its 10 Year Plan this summer. This will assist us in prioritising the topics that are waiting to go into our work programme. We do not currently have an agreed start date for an update to the autism guidelines. We proactively engage with NHS England and the Department of Health and Social Care so they are aware of our plans.
Who is responsible for applying the guidelines and accountable for ensuring that they are implemented?
Local commissioners and providers of healthcare have a responsibility to enable NICE guidelines to be applied when individual professionals and service users wish to implement it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
NICE works in close collaboration with our key national partners in health and social care, and other relevant external agencies to support the adoption and implementation of its guidelines. NICE is actively developing, with a wide range of stakeholders, tools and resources to support the uptake and implementation of its usable and impactful recommendations in identified areas.
Additionally, the NICE system implementation team are regionally based and engage with key health and care organisations, networks and system partners to help them use guidance and standards in practice. Key activities include:
• encouraging, informing and facilitating regional and local activities for the implementation of NICE guidance
• raising awareness of the range of NICE products
• gathering feedback and intelligence from stakeholders to inform NICE activities
• seeking examples of good practice to share with NICE and other organisations
• connecting NICE to local health and care systems.
NICE’s role is to produce guidance on excellence in practice, but it is for the relevant NHS commissioning body to put our recommendations into practice. NICE is not a regulator; we do not manage the delivery of NHS care.
What is the relationship between responsibility and accountability for (i) implementing the guidelines and (ii) implementing statutory guidance to the Autism Act 2009?
The recommendations in our guideline represent the views of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Accountability lies with individual clinicians and provider organisations, who must ensure decisions are evidence-based and in the patient's best interests. NICE itself does not enforce implementation or regulate care delivery.
Healthcare professionals, NHS organisations and local authorities are responsible for considering NICE guidelines when making clinical and commissioning decisions. They are expected to integrate the guidance into practice where appropriate, taking account of individual needs and local priorities.
Local authorities and NHS bodies (including NHS England and ICBs) are responsible for implementing the statutory guidance that underpins the Adult Autism Strategy. This includes supporting access to timely diagnosis, post-diagnostic support and the planning and delivery of appropriate services for autistic adults, children and young people.
Section 2 of the Autism Act 2009 places a statutory obligation on certain organisations to give due regard to the guidance issued under the Act. While there is flexibility in how the guidance is applied locally, organisations are expected to follow it or be able to demonstrate a clear rationale for any alternative approaches.
What is NICE’s role in disseminating good practice and supporting health and care services to implement the guidelines, including in the context of service pressures?
NICE is committed to making its guidance useful and usable.
NICE’s national implementation team identifies guidance during development that may need extra support for successful implementation. The team collaborates with national partners to align with system priorities, assess potential barriers, and create tailored tools, resources, and interventions. This ensures that the guidance is as practical and implementable as possible. Adoption and implementation team | Into practice | What we do | About | NICE
NICE’s regionally based system implementation team engage with key health and care organisations, networks and system partners to help them use our guidance and standards in practice. They promote a wide range of resources that NICE provides and help put guidance into practice, gathering feedback to inform NICE activities, including examples of good practice to share with other organisations. They also provide connectivity between NICE national and local systems. System implementation team | Into practice | What we do | About | NICE
Our autism guidance includes tools and resources to support implementation. These include quick guides for families and young people on diagnosis, clinical case scenarios, podcasts, example assessment pathways, signs and symptoms tables and developing multi-agency teams.
What evidence is there on the extent to which the clinical guidelines are implemented across England?
NICE uses a range of data, intelligence, and insights to understand how widely and effectively its clinical guidelines are being implemented across the health and care system in England. This includes:
• System Intelligence: Gathered through ongoing engagement with national and regional stakeholders, this qualitative insight helps NICE understand local priorities, challenges and the real-world context in which guidance is applied.
• Uptake Insights: This is quantitative data that tracks how extensively NICE recommendations are being used across services. It provides a measurable view of implementation and helps identify areas of strong adoption or where further support may be needed.
Although we do not have specific data on autism, we are aware of the NHSE data collection on waiting times. NICE recognises that there is significant unmet need in autism, which is a contributory factor to the topic being prioritised by NICE.
What are the main challenges that health and care services face in implementing the guidelines?
Health and care services face several key challenges in implementing NICE autism guidelines. These include limited service capacity and workforce shortages, particularly in diagnostic and specialist support services. The range of needs among autistic individuals, including co-occurring conditions, adds to the difficulty of diagnosing and delivering consistent care and support especially while waiting for a diagnosis. Implementation also varies across regions due to local priorities, staff training and service availability.
Organisational barriers, such as limited multidisciplinary coordination and resistance to change, further hinder progress. In addition, the implementation of our guidance is potentially cash releasing; however, the resources released are not always visible or reallocated within the sector.
If you would like any further information, we would be happy to help.
Yours sincerely,
Dr Sam Roberts
Chief Executive
19th June 2025