Best practice in safeguarding adults with learning disabilities: insights for more personalised services PI: Dr Rachel Fyson Researcher: Dr Anne Patterson University of Nottingham

Background Limited national guidance on issues of poor practice and abuse Rapid rise in number of adult safeguarding alerts Serious abuses uncovered in residential services for people with learning disabilities May 2011: BBC Panorama exposes abuse of people with learning disabilities in residential services run by Castlebeck

Personalisation & safeguarding Opposing ideas? Parallel systems? Personalisation was a reaction to the paternalism inherent within care management processes; safeguarding is an example of paternalism in practice Both personalisation and safeguarding are fundamental to the provision of adult social care, which is largely concerned with supporting ‘vulnerable’ people

Project aims To describe poor practice from the perspectives of adults with learning disabilities and their families To explore understandings of both ‘poor practice’ and ‘abuse’ amongst frontline care/support staff To use findings to develop guidance on best safeguarding practice in residential care & supported living services

Methodology Focus groups with people with learning disabilities (n=25) and family members (n=9) to identify common examples of poor practice Development & piloting of interview questions, including vignettes drawn from real life experiences of focus groups members 56 interviews across 3 types of service provision: large private sector provider; large third sector provider; ‘owner-managed’ individual care homes

3 research issues Difficulty of engaging organisations in safeguarding research & likelihood of bias Value of embedding research in service user perspectives as an alternative/in addition to undertaking user-led research Usefulness of vignettes – but would an ethnographic approach be better?

Key findings Participants found both ‘abuse’ and ‘poor practice’ difficult to define When faced with real-life vignettes, participants did not have an shared understanding of what constituted was acceptable practice, poor practice or abuse

A member of staff is leaving A member of staff is leaving. All residents are expected to contribute £10 towards a leaving present. Reasonable 1 person (1.8%) Poor Practice 7 people (12.5%) Abuse 46 people (82.1%) Couldn’t decide 2 people (1.8%)

A resident only has a limited amount of money each week to spend as they choose, whilst they are saving for a holiday. Reasonable 51 people (91.1%) Poor Practice 1 person (1.8) Abuse 1 person (1.8%) Couldn’t decide 3 people (5.4%)

On a Saturday evening shift a member of staff brings in horror film on DVD. A resident who is scared of horror films is told to watch TV in her own room. Reasonable 3 people (5.4%) Poor Practice 23 people (41.1%) Abuse 24 people (42.9%) Couldn’t decide 6 people (10.7%)

It’s a resident’s birthday and she has expressed a wish to go out to celebrate in the local pub. On the actual day she is told that there are not enough staff on duty, so she stays in and has cake with other residents. Reasonable 18 people (32.1%) Poor Practice 27 people (48.2%) Abuse 7 people (12.5%) Couldn’t decide 4 people (7.1%)

An obese resident lives on a diet of McDonalds, pizza and fizzy pop An obese resident lives on a diet of McDonalds, pizza and fizzy pop. Staff do not try to change his diet because it is his choice. Reasonable 3 people (5.4%) Poor Practice 22 people (39.3%) Abuse 27 people (48.2%) Couldn’t decide 4 people (7.1%)

Key findings (cont) Much information was recorded to ensure the safety of service users and quality of service – but staff had limited understanding of the purpose of what they recorded Staff were confident that they would report abuse, but acknowledged that they would find poor practice hard to report The role of the frontline manager was regarded as key to setting organisational culture

Making safeguarding personal… How can ‘personalisation’ be made a reality in congregate care settings? Need for more spaces for reflection within residential care and supported living services Need to keep frontline managers ‘on the floor’ working alongside staff Challenge of ‘floating support’ services or situations where support is delivered by multiple agencies

‘Added value’ project Implementing guidelines and measuring the impact Working with 6 national providers of residential care/supported living services for people with learning disabilities Pre-test/post test design ‘Intervention’ takes form of structured staff team discussion

Disclaimer This presentation reports on independent research funded by the NIHR School for Social Care Research. The views expressed in this presentation are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health/NIHR.