The Seldom Heard project was launched in recognition of the need to get better at seeking the views of children and adults with learning disabilities and more complex communication challenges.
The CBF is committed to seeking the views and perspectives of people with severe or profound and multiple learning disabilities who are often overlooked as part of consultation exercises. This National Health Service England (NHSE)-funded project aims to hear the views of 7 children and 7 adults with severe learning disabilities or profound and multiple learning disabilities. The CBF is working in partnership with the Tizard Centre to deliver this by summer 2021, with an interim report in the spring.
Research project on aggression in adults with learning disabilities
University College London
This study aims to improve understanding and treatment for adults with learning disabilities who display moderate to severe aggression in community settings. Funded by the National Institute of Health Research, the research will look to improve treatment for adults with learning disabilities who display aggression by developing a personal treatment plan which could be implemented by the NHS.
Harmful Sexual behaviour
Tizard Centre, University of Kent
The CBF is involved in a research study, led by Professor Glynis Murphy from the Tizard Centre, on interventions for people with intellectual disabilities who demonstrate harmful sexual behaviour. The study aims to establish the clinical and cost-effectiveness of psychological treatment programmes.
CQC- Experts by Experience
Following the Winterbourne View abuse scandal, the CBF worked with other voluntary organisations for 4 years to promote involvement of Experts By Experience (ExE) within the work of the Care Quality Commission. We were the support organisation for ExEs who are family carers of adult relatives (aged 16 years old or above) with a learning disability who have behaviour described as challenging and/or mental health needs; or family carers of adult relatives (aged 16 years old or above) with profound and multiple learning disabilities.
The CBF was asked to step in at short notice to do this work for the CQC Learning Disability Review (LDR) following the BBC Panorama programme about Winterbourne View. This was important work that identified significant failings in services at both a systemic and individual level. Family carer ExEs identified and reported a range of issues (CBF Learning Disability Review Report) and CBF has and will continue to follow these up for individuals and campaign for systemic change.
This work identified the value of including and supporting family carers with lived experience within the regulation process. Over the 4 years, ExEs moved from being part of inspection teams to also being included in (but not limited to) registration processes and delivering training to inspectors. ExEs with lived experience demonstrated their commitment to improving outcomes for individuals who use services. Though the CBF’s involvement in the project came to an end in 2016, we very much hope that CQC will ensure that this type of work continues, and that this group of ExEs are valued, supported and listened to in the drive for better lives for people with learning disabilities.
People with complex needs are more in need of personalisation than anyone. Yet the CBF was aware they were rarely getting access to personal budgets. And there were many concerns about the quality of service outcomes for them – and this was before the Winterbourne View Panorama programme. So the CBF worked with local authorities from the East Midlands and NHS commissioners and the Department of Health provided some funding so some families from elsewhere could be included.
The CBF’s personalisation project ran between summer 2011 and summer 2012. The aim was to understand how to deliver personalisation for people with learning disabilities whose behaviour is described as challenging.
Personalisation means support and services being geared to a person’s individual sought outcomes which have been identified through person-centred planning. So instead of being placed in any available care home or hospital, a person would perhaps access supported living near their family or other local connections; be involved in the local community or access creative employment opportunities related to their character, abilities or interests.
The main benefits the project sought to achieve were to
- Ensure higher quality outcomes for the 26 individuals involved
- Achieve better outcomes for the same or less money
- Reduce out of area placements, with more people living close to their families
- Improve future commissioning based on the work of the project
- Disseminate learning from the project widely.
The CBF’s personalisation project drew to a close in late summer 2012.
Everybody Matters is the result of an exciting 2015 film project starring Colleen and Shaun, both of whom have learning disabilities and behaviour described as challenging. Shaun and Colleen have experienced poor support and had restricted, unhappy and sometimes unsafe lives in the past. Their stories show that everyone can be supported to live a full and active life in their community.
Family based support
Northumberland, Tyne and Wear NHS Trust
This research aims to understand the impact of caring for someone with learning disability and challenging behaviour and investigate how families build resilience. The project focused on the impact of Positive Behaviour Support with Acceptance and Commitment Therapy as a key part of building resilience for families. This project was led by Steve Noone. Get more information about this research.