Independent advocacy is crucial to make sure a person’s voice is heard and their human rights are protected. This is especially important when a person is subject to compulsory and restrictive powers. Consistent and effective advocacy must be provided to people who most require it, whenever they require it, including to people with learning disabilities, autism or both, who are subject to long term segregation. Improvement to the delivery and commissioning of advocacy is required to achieve this. This briefing highlights the key features of advocacy for people with learning disabilities, autism or both who are in long term segregation, which must be accessible, highly competent, holistic, independent and perceived to be so, connecting, supporting and joined up. The paper also sets out two commissioning options: national commissioning – the model could be specified clearly, activated promptly, its delivery easily monitored, and there would be a clear line of sight on the resources; and local commission – this would allow locally commissioned services to align with most existing statutory provision. Irrespective of the commissioning arrangements, the service must be able to undertake the full range of statutory advocacy duties, rather than referring the person on and requiring that they relate to several advocates. The paper conclude with eight recommendations, including ensuring that advocacy for people in long term segregation is provided on an opt-out basis, to ensure a greater number of people in long term segregation receive the timely advocacy support and representation they need for their voice to be heard and their rights upheld.

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi‐authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence‐based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.

This case concerns deprivation of liberty authorisation and the role of supervisory body. P was 26 years old with severe learning disability and autistic spectrum disorder. His placement broke down and he was urgently moved into a care home on 5 September 2014. On 24 November 2014 an urgent authorisation was issued by the care home and on 23 December 2014, a standard authorisation was granted by Surrey County Council, expiring on 18 October 2015. His mother, acting as relevant person’s representative and litigation friend, successfully challenged the authorisation and the court declared that it was in P’s best interests to move to a new placement after a period of transition. The court held that P had been unlawfully deprived of liberty prior to the urgent authorisation and between its expiry and the commencement of the standard authorisation. HHJ Cushing was very critical of the supervisory body for making an authorisation that ran for too long (80% of the maximum term) in circumstances where it was clear that the care home where he was deprived of his liberty was only suitable in the short term.