We share the Committee’s concern about the incidences of autistic people and people with a learning disability dying in inpatient settings. We agree with the importance of learning from and improving quality of care to ensure that the deaths of people with a learning disability and autistic people in hospital are not medically avoidable. However, we do not accept this recommendation as we do not intend to require the independent review of the deaths of all autistic people and people with a learning disability. We have set out the reasons for this below. As the Committee is aware, there is already an extensive programme of work in place to review the deaths of people with a learning disability and autistic people–‘Learning from Lives and deaths, people with a learning disability and autistic people’ programme (known as LeDeR) - supported by an annual report and Actions from Learning report aimed at improving services (both published). Since it was introduced, the deaths of over 24 The treatment of autistic people and people with learning disabilities: Government Response 13,000 people with a learning disability have been reviewed. NHS England revised their LeDeR policy in March 2021, specifically in response to the body of evidence coming from reviews. The most significant changes included: • introducing a two-level approach to reviews (all deaths notified to LeDeR to receive an initial review and where it appears there are concerns or lessons to be learnt, an in-depth focused review will take place); • focused reviews in respect of the death of a person from an ethnic minority (given known risks outlined in previous annual reports); • establishing a dedicated workforce to carry out LeDeR reviews locally and strengthening local governance; and • expanding the scope of LeDeR to include autistic people. LeDeR reporting has included the deaths of autistic people since January 2022. This means that all autistic adults with a clinical diagnosis of autism whose deaths are notified will have a review carried out by their local system. Anyone can report the death of a person with a learning disability (over the age of 4) or an autistic person (over the age of 18) to the NHS. This includes family doctors (GPs), health and social care staff, family members, friends, and carers. This can be done online, and more information found at: leder.nhs.uk. The information provided when reporting a death will be used by the LeDeR programme to better understand the needs of people with a learning disability or autistic people and to improve future services. Deaths may also be reviewed through statutory processes, such as safeguarding adult processes and coroners’ reports. All children’s deaths are reviewed as part of the child death review process. We do not therefore consider that there would be an additional benefit to mandating LeDeR reviews. It is also important to note that there would be practical challenges to mandating LeDeR reviews. In particular, it is unclear exactly who would be obliged to report under any requirements and what this requirement would entail in addition to existing processes and checks. For example, many people with a learning disability and autistic people do not have a formally recorded diagnosis. There are estimated to be approximately 1.2 million people with a learning disability in England, with around 300,000 people recorded on GP learning registers. Often for those who do have a diagnosis, the responsible body aware of this (e.g. their GP) may not be informed about their death until a later date, with more than half of all learning disability deaths taking place in a hospital setting. As set out above, all deaths notified to LeDeR will have an initial review. However, we are not complacent about this issue and will continue to keep LeDeR reporting under review to ensure there is sufficient robust data to inform learning.