Autism Alliance response to Lord Darzi’s report and the Government’s announcements about the NHS

The Autism Alliance UK welcomes the Independent Investigation of the NHS by Lord Darzi and its call for reform to fix the broken system of healthcare in the UK. Despite the Autism Act 2009, successive Government strategies and many commitments, outcomes for autistic people have not improved as they should – and system level reform is long overdue.

We agree with the Government’s intention to shift healthcare from hospital into the community. Autistic people and their families suffer every day from a lack of community-based support, and too many bear the consequences through deteriorating mental health and for some, confinement in locked inpatient settings. However, making this change will need a substantial investment in social care and wider community services. The reforms cannot just amount to a shift in spending within the NHS, but will need either a transfer out of the NHS, or new investment.

‘No money without reform’ is an understandable principle, but the Government needs to look beneath the figures and acknowledge that for many organisations delivering vital community-based support, the situation right now is incredibly precarious – and that there is nowhere else to go without a loss of the services people and families depend on. The balance between funding the NHS and funding community services needs to change now, not in five or ten years.

We also agree with the Government’s focus on prevention, which is clearly the right principle and must be an urgent priority. However, this is not just about preventing ill-health, but about promoting wellbeing and helping people who need support to flourish. Only then will the healthcare system support our country’s population in the way it was meant to, and only then will we make the shift to a cost effective system capable of meeting need.

The third sector plays an essential role in providing the best community-based care and support - particularly through specialist services that support people with higher and more complex levels of need. For autistic people, and for many others, the third sector often makes the crucial difference in securing life chances, opportunity and wellbeing. If the Government neglects this, and if it neglects the fundamental importance of social care and community support delivered outside the NHS, it will have failed.

In his report, Lord Darzi highlights the huge gap between need and capacity in the assessment system for autism and ADHD – although this is incorrectly positioned under ‘access to mental health services’. The assessment of neurodivergence has not caught up with changes across society, and the next 5-10 years present an opportunity to stabilise and evolve the system in order to connect autistic people, and other neurodivergent people, to the right support at the right time. Along with other national autism organisations, the Autism Alliance has called for investment in assessment as part of a submission to the Budget 2024 process.

Finally, Lord Darzi’s report notes that those with greatest need for care are least likely to receive it. Autistic people‘s experiences too often bear out this unacceptable truth, and their voices and needs should be at the heart of the next ten year plan for the NHS, and the plan for social care the Government must urgently produce. The inequalities experienced by autistic people and their families, across life expectancy, mental health and treatment in care represent one of the greatest social injustices of modern times. They must not be allowed to continue.