The Challenging Behaviour – National Strategy Group meeting, ‘Cultures’, was held in-person on 20th May 2024. This meeting focused on:
- working together to deliver good support for people with learning disabilities
- building positive cultures
- identifying – and addressing – closed and poor cultures
Films and presentations
The meeting started with a film by Crystal, Jack, Julien, Nathan and Stephen, who all have a learning disability. Crystal, Julien and Stephen are supported by and work for Achieve Together, and are members of Campaign 4 Change, and Jack and Nathan are supported by Choice Support. The film, which also featured Michael Fullerton (Director of Wellbeing, Strategy and Collaboration at Achieve Together) and Abby Burt (Complex Care Lead at Choice Support), focused on what makes a good culture, the impact of good and bad cultures, and what people can do to make sure cultures are positive.
Attendees then saw a presentation by Liz Durrant, DeputyDirector of Mental Health, Learning Disability and Autism Quality at NHS England, on creating positive cultures and tackling closed cultures within inpatient settings. Liz shared information about NHS England’s commissioning framework and the new culture of care standards for mental health inpatient services, including services for people with a learning disability and autistic people. These standards were co-produced with a wide range of stakeholders, including people with lived experience and their families.
Attendees were then shown a film from the Insider Voices project, a joint project between the Challenging Behaviour Foundation, the Royal College of Nursing and NHS England on how learning disability nurses can create more positive cultures and what actions they can take if they are concerned about the culture of their service. Rosemarie Rodgers, a family carer who contributed to the film, introduced it to attendees.
Read more about the Insider Voices project and watch the film
Viv Cooper then provided an update on the co-produced, lifelong action plan. This involved sharing a new video introducing the action plan, as well as updating attendees on the progress that has been made on actions since the last CB-NSG meeting, and sharing that the actions can now be downloaded as PDFs.
Watch the film and learn more about the co-produced, lifelong action plan here
Sharing and embedding best practice – current initiatives
The main focus of the meeting was on sharing good practice – work and research that has recently been or is currently being carried out that aims to improve cultures and support people with a learning disability. There were three sessions of this, with different posters summarising this work presented in each one. Attendees were encouraged to think about how each piece of research/practice could be:
- Adopted
- Adapted
- Connected to other pieces of work
Session 1
- Getting the culture right! – Achieve Together, Choice Support and Campaign 4 Change
This poster built on the film shown at the beginning of the meeting about what a good culture means and what can be done to create these cultures.
See the poster here:
Some of the key feedback and comments included:
- Emphasising that people with learning disabilities aren’t asking for anything unusual or unreasonable – these are simple things that good supporters should be doing
- Sharing success stories
- Making sure that co-production is meaningful, not tokenistic
- Making sure that people with a learning disability are, and feel, in control of their lives
- Trying to reduce staff turnover, but also making sure that when staff changes do happen, the person’s story is shared and known by everyone who is supporting them – such as by having a Wiki/Multi Me
- Being aware of the differences between residential and supported living – in supported living, you often have more rights, e.g., a tenancy
- Making sure that staff are behaving in the right way and being respectful – sometimes staff are the ones with ‘challenging behaviour’ and this needs to be tackled – but also being aware that good team members want to be there and get as much out of working in a positive culture as the people being supported do
- Improving training, particularly around autism, and telling government that support workers need better pay and support
- Being aware of the links between support and mental health – having good support can help improve mental health
- Making sure advocates are able to tell the difference between good and bad support, spot warning signs, and act on these
- The External Support Group – Paddy Behan and Theresa Joyce
Paddy Behan (PBS UK) and Dr Theresa Joyce presented a summary of the work of the External Support Group. The External Support Group (ESG) is a CBF-led initiative bringing together people with significant practical experience in supporting people with complex needs in community settings.
Read more about the ESG here:
ESG
See the poster here:
Some of the key feedback and comments included:
- Thinking about how advocates can be educated and involved
- Working on joint formulations
- The importance of flexibility
- Supporting family carers to take the first steps in planning for the future – Cally Ward
Cally presented a poster sharing work that she has been doing with the CBF on supporting family carers of people with a severe learning disability to plan for the future. Following conversations with family carers about the practical and emotional barriers they face, a resource to help family carers take these first steps has been developed. This resource adapts a ‘front-sheet’ made by Kelly, a member of the CBF’s Family Support Team and a family carer, into a template that can be used by family carers to put together the key information that would be needed if someone else was taking over managing their relative’s support.
See the poster here:
Supporting family carers to take the first steps in planning for the future
Some of the key feedback and comments included:
- Using this tool to support transitions, and potentially adapting it to support transitions for children and young people/to and from hospital
- Difficulties with initiating conversations about planning for the future/what might happen when someone is no longer able to care
- Connecting this work with other projects/work such as the Oxfordshire Family Support Network’s Embolden project, the JMS Trust, and Carers UK’s Jointly app
- Supporting Families the CBF Way – Gemma Harpum
Gemma, the CBF’s Family Support Lead, shared information about the CBF’s Family Support service. This information focused on the way the Family Support team supports family carers – not putting a limit on how much support is provided, signposting people to other organisations if the CBF is not the right one to help them, and helping people with safeguarding concerns even if their relative does not have a learning disability – and the key issues that families have raised with the Family Support Team.
See the poster here:
Supporting Families the CBF Way
Some of the key feedback and comments included:
- The importance of listening and following through
- The potential of linking/backing up the issues that families are raising with data collection/sources
- Cultures Audit Tool – PBS4
Anna Rees and Maya Ostey from PBS4 shared information about a Cultures Audit Tool that PBS4 has developed internally to improve cultures within the supported living services that they manage. This tool, which is based on the principles of capable environments,
See the poster here:
Find out more about PBS4’s tool here:
Some of the key feedback and comments included:
- The usefulness of the tool, and questions about whether this learning could be shared with other providers
- The potential of including people with lived experience and families as part of the assessment/checklist process
- The Challenges of Using and Managing Medication – Danielle Adams and Iman Ghosh
Danielle and Iman from the University of Warwick presented a poster based on the findings of a systematic review of studies that look at the challenges and issues around medication that are faced by people with a learning disability, carers, and health and social care professionals.
Learn more about this project here:
Medication Support (warwick.ac.uk)
Some of the key feedback and comments included:
- Suggestions that this work could link with the St Mary’s Hospital Leeds ‘Bigger and Better Labels’ project
- Questions about the use of other types of medicines and non-medication therapies (such as hearing aids)
- The practice implications of annual health checks
Session 2
- What Matters to Me – Taylor Anderson
Taylor, the What Matters to Me Project Lead at the CBF, shared information about this ongoing project, which works with young people with severe and profound and multiple learning disabilities to understand their views, preferences and experiences, and uses these views, preferences and experiences to influence policy and practice.
Read more about the What Matters to Me project:
See the poster here:
What Matters to Me
Some of the key feedback and comments included:
- Using these methods to build on the CQC’s ‘Right Support, Right Care, Right Culture’ work
- How attendees can better engage with children and young people with severe and profound and multiple learning disabilities to understand what is important to them
- Using this work to influence and educate commissioners
- Small Supports – Madeline Cooper and Dave Barras
Madeline from NDTi and Dave from Positive Support For You presented a poster about the Small Supports programme, which works to develop organisations that provide bespoke support to people on a small scale.
See the poster here:
Find out more about the Small Supports programme:
- Good Lives – Sam Clark
Sam from Learning Disability England gave a presentation about the Good Lives Framework and Good Lives Manifesto, and asked attendees to think about things that they could do to adopt these.
Find out more about the Good Lives Framework here:
Find out more about the Good Lives Manifesto here:
Some of the key feedback and comments included:
- The potential of providing CPD for advocates
- Ensuring that commissioners engage with the people that matter to an individual
- The importance of employment and valuing someone’s contribution
- Responding to the current consultation on reforms to Personal Independence Payments
- Homes not Hospitals data campaigning – Owen Bowden
Owen from Mencap presented a poster about how Mencap have been analysing the data produced by NHS England on the number of people with a learning disability and autistic people detained in inpatient units. This poster covered the key findings from Mencap’s analysis and the ways that this data/analysis has been used to raise awareness and campaign.
See the poster here:
Homes not Hospitals data campaigning
Some of the key feedback and comments included:
- Questions about whether there is any data on autistic people in mainstream psychiatric wards
- Whether data is available about medication in the community and/or medication reviews
- CBF Workshops – Penny Wood
Penny, the CBF’s Workshop Coordinator, shared information about the workshops that the CBF runs, and information about how they are co-produced and co-delivered with family carers.
See the poster here:
Find out more about the workshops that the CBF offers:
Workshops
Some of the key feedback and comments included:
- The potential of getting workshops accredited
- The importance of describing support needs when explaining what severe learning disabilities are – as descriptions are easier for people to decipher
- Use Your Power – Stephen Hinchley
Stephen from VoiceAbility presented a poster about VoiceAbility’s Use Your Power campaign.
See the poster here:
- Overcoming Housing Barriers – John Verge and Isabelle Garnett
John Verge and Isabelle Garnett presented a poster based on the Housing section of the co-produced, lifelong action plan. This poster set out barriers that people with learning disabilities and their families face, how these can be addressed, and good practice examples and guidance.
See the poster here:
Some of the key feedback and comments included:
- The need for housing to be a bigger part of early years/transition
- The need to tackle the assumption that idle capacity is a problem
- The need for crash pads and proactive support teams – emergency accommodation
- Using dynamic support registers to plan future housing needs
- The impact that raising the level of Disabled Facilities Grants (DFG) would have
Session 3
- Nothing Without Us – Taylor Anderson
Taylor presented a poster based on a resource developed by a professional and a family carer on behalf of the CBF, setting out how co-production with family carers can be done successfully
See the poster here:
Nothing Without Us
Some of the key feedback and comments included:
- The need for funding to be specifically allocated to support and enable co-production with family carers
- The need for professional education to include the principles of co-production
- ‘A Need, Not A Want’ – Engaging with Family Carers in the Black Country – Polly Somervell
Polly presented a poster based on a resource, coproduced by family carers, Black Country Healthcare NHS Foundation Trust, and the CBF, about how to successfully engage with family carers of children and adults with severe learning disabilities in the Black Country.
See the poster here:
A Need, Not A Want
Some of the key feedback and comments included:
- The importance of including families of people with different diagnoses and needs, to ensure that the whole population is represented
- How can we ensure that professionals are actively listening and acting upon feedback and views of family carers?
- Making Positive Moves – Louisa Rhodes
This poster shared information about the Making Positive Moves research project. This project interviewed people with learning disabilities who had previously been in hospital about what is important to help them to stay living well in the community.
See the poster here:
Find out more about the Making Positive Moves project here:
- A Review of Advocacy – Gail Petty and Kate Mercer
This poster shared learning from a national review of advocacy for people with learning disabilities and autistic people in inpatient settings.
See the poster here:
Some of the key feedback and comments included:
- The need for the roles/expectations of advocates to be more explicit
- How to tackle cases where some advocates aren’t able to see the needs of the person, and/or are not skilled or knowledgeable enough to provide effective advocacy
- The importance of advocacy being independent, and not in-house, so that advocates can effectively question and challenge
- The need for a long-term plan for advocacy
- Waste of Lives, Waste of Money – Victoria Wright and Leo Andrade
This poster focused on the Waste of Lives, Waste of Money campaign, co-produced by families and charities, calling for a plan for developing support for people with a learning disability and autistic people to be discharged from hospital and to live in their local communities.
- National Housing Community of Practice– Clare Skidmore
Information was shared about the National Housing Community of Practice, which is co-chaired by NHS England and Partners in Care and Health (LGA/ADASS), and which brings together a range of stakeholders to share good practice around housing for people with a learning disability and autistic people.
See the poster here:
National Housing Community of Practice
Afternoon presentation
In the afternoon, Dr Ken Courtenay, NHS England’s National Clinical Director for Learning Disability and Autism, spoke about his reflections on the films and presentations that had been shared throughout the day. He also shared information about his priorities as National Clinical Director and the importance of reducing health inequalities for people with a learning disability and autistic people. These priorities were:
- Supporting local areas to have effective learning disability teams
- Co-producing research alongside people with lived experience to drive improvements
- Reducing the reliance on, and improving the quality of, inpatient mental health care
- Working in partnership with families and carers
- Improving waiting times for autism assessment