Advocacy with people with learning disabilities and autistic people, who are subject to seclusion, segregation or restraint

Advocacy with people with learning disabilities and autistic people, who are subject to seclusion, segregation or restraint

In October 2018, the Secretary of State for Health and Social Care asked the CQC to carry out a review of autistic people, and people with a learning disability and/or mental health condition who may be subject to restrictive practices as a result of ongoing concerns in this area.  In October 2020 CQC published their final report.  Whilst it recognised the importance and value of Independent Advocacy it also highlighted concerns that advocacy is not having the impact it could and should be:

“People having access to independent advocacy is crucially important, but the availability and quality of advocacy was very variable

 We [CQC] found that:

 Access to high-quality advocacy varied across the hospitals we visited and that the role of an advocate was not consistent.

There was some confusion between the provider and commissioner about who the advocate was, or which organisation provided the services. This led to people being denied access to the service. In some cases, there was no evidence that advocacy had been offered to people.

Even where people were allocated an advocate, they were not always engaged in decisions about the person’s care.

There were examples of where the advocate was not informed of certain people on the ward.

When people did have access to advocates, there were examples where advocacy was of a poor quality, where advocates were not upholding people’s rights.

Advocates were also under pressure themselves and felt they did not have enough time to support everyone that they were responsible for.

One reviewer noted: “IMHAs [Independent Mental Health Advocates] feel they are not able to have enough time to advocate fully for people at [hospital]. They have been asked to increase their input by the [clinical commissioning group] but there is no additional funding available.”

Advocacy could have a massive impact for people in these settings.  Advocacy should be making more people’s lives better.  This report has confirmed what many of us have privately (and publicly) been feeling – that there are a number of ‘problems’ that now demand our attention.

Kate Mercer from Blackbelt advocacy would like to invite the advocacy community to come together to have an honest discussion to a) get specificity on what these issues are b) create a plan to fix and address these problems.  Here is a link to an important briefing paper written by Kate Mercer (Blackbelt Advocacy) and Jonathan Senker (VoiceAbility), which sets out some of the issues.

If you’d like to get involved, please email: Kate Mercer –