RCN position on the health inequalities autistic people face in accessing health and social care services and the potential role of the nursing workforce in addressing these
This RCN position statement has been developed following an Emergency Resolution that was unanimously passed at RCN Congress 2023. The resolution called for RCN Council to lobby health care providers and commissioners to end the inappropriate placement of autistic people. There have been multiple incidents of autistic people being admitted to inappropriate settings, typically mental health units or acute hospitals, where their human rights can be restricted and harm can be caused.
The RCN’s position is that inappropriate placement of autistic people can cause harm and deprive people of their human rights. In order to address this there needs to be appropriate and sufficient support for autistic people, and understanding of autistic needs across health and social care. This position statement outlines the action required to achieve this.
Background
Autism was described as a diagnostic concept by Kanner in the 1940s, and first appeared in the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases toward the end of the 1960s. Autism was initially believed to be rare; however, as diagnostic manuals have changed and the autism definition has evolved, it is now understood to be far less so. Epidemiology puts prevalence at approximately 1.2% of the general population. However, national statistical data show substantial generational differences in the prevalence of autism. The reasons for these differences are complex and multifactorial, and largely relate to changes in diagnosis and awareness over time.
Today, neurodiversity is accepted in contemporary society, and neurodivergences such as autism are seen as providing important contributions to our diverse communities. This movement has led to autism being considered more a neurological difference. Diagnostic manuals continue to play an important role in formal diagnosis, particularly for autistic people who need clinical support or intervention. However, the language in diagnostic manuals continue to use phraseology such as “disorder”, and consideration as to whether autism is a “disability” is contentious amongst autistic people and health professionals. Autistic people are each influenced by autism in their own unique way.
Autistic people report receiving lower quality general physical healthcare than others; on average, autistic people die earlier than the general population. Based on current evidence, comorbidity of physical health conditions occurs more commonly in autistic people. A cross-sectional study found that the health needs of autistic people are often poorly met. This study outlined that one in three autistic adults reported they were unable to access primary healthcare due to factors including a lack of understanding of autism, communication differences, and sensory issues.
Studies have shown that more than six in ten autistic people have considered suicide, and more than three in ten autistic people have attempted suicide. For autistic young people, struggles with fitting into school, social media, and identity are among the reasons given for the increased use of mental health services, both community and inpatient services. Since 2017, NHS England Assuring Transformation data has shown a steady increase in the number of autistic people admitted to mental health inpatient care. In 2023, the number of autistic people admitted to mental health inpatient settings in England exceeded admissions for people with a learning disability for the first time.
Despite the increase in diagnosed autism prevalence and subsequent research output, there is a disconnect between what is researched and what evidence is produced which can guide clinical practice. More clinical research is needed to test the efficacy and cost-effectiveness of interventions and service models for improving outcomes for autistic people accessing health and social care services.
National Autism Strategy, Policy, Guidance and Development
The Equality Act, 2010 for England, Scotland and Wales, the Disability Discrimination Act 1995 and the Disability Discrimination Order 2006 for Northern Ireland, set statutory rights to access and equity of outcomes from health and social care provision for people with a recognised disability. Autistic people must have their health and social care provided in ways that are human rights compliant, which will ensure protection for their rights supported by the European Convention on Human Rights, the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Convention on the Rights of the Child.
In England, the Autism Act 2009, Autism Strategies and subsequent Statutory Guidance, which outline implementation plans for the local systems, have gone a long way towards prioritising the needs of autistic people. Additionally, the NHS England (2019) Long Term Plan has provided further commitment and incentive to reduce the health inequalities autistic people experience through initiatives to improve the quality of autism assessment pathways, access to physical healthcare, and improvements in mental health treatment and support. These are underpinned by a focus on enhancing autism data, research and evidence-base, enabling local decision-making essential for appropriately funded, high-quality service development and workforce planning. There is an established autism core capabilities framework in place for informing autism support at all levels.
The Welsh Government’s Code of Practice on the delivery of autism services, developed under the Social Services and Wellbeing (Wales) Act 2014 and the NHS (Wales) Act 2006, makes it clear how autism services should work and what support people can expect from local health and social care organisations. It states that local authorities, local health boards, and NHS trusts in Wales should work together to monitor, plan, and run health and social care services that meet the needs of autistic people in their area. This includes assessment and diagnosis, awareness raising and an explicit requirement for health and social care staff to receive training. There is a National Autism Training Framework for Wales in place.
The Scottish Government published the Scottish Strategy for Autism in November 2011, which aimed to ensure that progress was made in delivering quality services for autistic people and their families, and a subsequent document setting out priorities for action through 2021. Proposals have also been made for the content of a Learning Disabilities, Autism and Neurodivergence Bill, and consultation on this bill has not concluded at time of writing. The proposed content will likely encourage appropriate workforce planning, provision, and training across Scotland's health and social care workforce, including but not limited to nursing. There is a National Autism Training Framework for Scotland in place. Regarding nursing specifically, we note the work being taken forward by NHS Education Scotland (NES) under the auspices of the Learning Disability Nursing Workforce & Education Review for Scotland. We expect the Review will support nursing staff in gaining and retaining the knowledge and skills they need to help people with autism or who are otherwise neurodivergent in the most appropriate way required to ensure person-centred care.
In Northern Ireland, The Autism (Amendment) Act (Northern Ireland) 2022 set the requirement for the publication of an Autism Strategy (2023-2028) and Action Plan, which are cross-departmental and cross-public bodies. These focus on co-production underpinning all aspects of autism support and a commitment to collecting and using data to inform service planning. This progress is commendable. However, there is a need for appropriate funding to deliver this effectively.
What is the Royal College of Nursing calling for?
The RCN welcomes the commitment from Governments across the United Kingdom to prioritise the needs of autistic people. Yet despite this, a steady stream of press reports published over the last two years have shared stories of autistic children, young people and adults receiving sub-standard care across health and care services in England, Northern Ireland, Scotland, and Wales. Driving forward this agenda to reduce health inequalities for autistic people requires dedicated leadership and focus across all health and social care disciplines, including nursing.
RCN Members have reported that mandatory training and core professional training often contains minimal autism-related content, and autism-related content is not specified in the NMC Future Nurse Standards. Members of the nursing workforce may personally choose to progress their professional development to obtain competencies in autism to meet the needs of autistic people in their care. However, this continuing professional development is not standardised across the UK.
1) More research relating to effective health and social care support for autistic people is needed, and nurses have a key role to play in informing and undertaking this research.
Utilising the nursing workforce to lead, undertake and deliver research across the NHS will promote continually improving healthcare. Research and use of the evidence it generates enables us to address some of the most important and exciting challenges, including advancing our future workforce. More specifically, utilising the nursing workforce to deliver clinical intervention trials supporting autistic people across the NHS would have the benefit of improving clinical practice. It would also contribute to developing new knowledge on meeting the needs of autistic people across our services.
2) The whole nursing workforce need to demonstrate Tier 2/autism informed competence in autism support as described in the national framework from their country of practice. Regional workforce plans are needed to ensure there are Registered Nurses working at enhanced, advanced, and consultant levels of practice to provide support into health and social care services including specialist autism services.
The nursing workforce must have appropriate autism training and understanding relevant to their role. This includes the availability of further autism specialist training where needed, including post-registration training and Continuing Professional Development. Nurses should utilise the professional frameworks for autism competencies for their country to align with their role and identify which competencies are needed and at what level, with a minimum expectation of Tier 2/autism informed.
3) Workforce modelling is required for each region and country to describe the autism skills needed in the nursing workforce, and wider health and care services. This needs to detail from the skills needed in all services to specialist autism support services.
Health and Social Care Commissioning Bodies and Health and Social Care Providers across all sectors should carry out robust workforce planning in line with the RCN’s Nursing Workforce Standards, describing the strategy for a nursing workforce who have appropriate and sufficient knowledge and skills to meet the needs of autistic people.
The RCN Learning Disability Nursing Forum and Neuroscience Forum will utilise this position statement in supporting members to promote evidence based effective support for autistic people. Please direct any queries about this position statement to the Royal College of Nursing’s Professional Lead for these forums Jonathan.beebee@rcn.org.uk.
