‘Demonstrating Commitment to Transforming Care of People with Learning Disabilities’
The Challenging Behaviour-National Strategy Group (CB-NSG) meeting, ‘Demonstrating Commitment to Transforming Care of People with Learning Disabilities,’ was held online on 27th November 2023. This meeting followed on from the June 2023 meeting, which focused on building on the co-produced action plan work previously undertaken by CB-NSG members. There were discussions on what was needed to ensure there was an effective Transforming Care programme to meet the needs of people with learning disabilities throughout their lives.
You can read the write-up of the June 2023 meeting here
Introductory presentation
This meeting started with a film presented by people with a learning disability, supported by Achieve Together and Choice Support. In the video, four people who have a learning disability shared their experiences and thoughts of being stuck in the hospital and what has helped them to move on in their lives, which included:
- Friendships
- Pushing themselves
- Focusing on moving forward
- Getting advice from staff and professionals when needed
- Families support
- Care professionals
- Self-encouragement
They gave strong messages about the need for urgent action.
This was followed by an animation, ‘Transforming Care: What We Need to See,’ in which family carers spoke about what they needed to see for care to be transformed for their relatives. In the animation, family carers shared the importance of a person centred approach, early intervention, and coordination and collaboration between all parts of the system. They thought there might be one system with information and support; however, they have come to realise that there are many systems which do not communicate. They also highlighted that these systems needed to collaborate. Family carers also stressed that it was possible to get it right for their children. They also shared that a person-centred approach is essential, and this needs to be built into everything.
Dan Scorer (Mencap) then gave a presentation on the update on the co-produced life-long action plan. This included members of the CB-NSG writing surveys, analysing responses, producing new resources, and asking people what they wanted the action plan to look like. A mind map format was produced from this and presented at the meeting.
Workshops
There were three workshops at the CB-NSG meeting, one in the morning and two in the afternoon. These workshops focused on:
- Workshop 1: Using the coproduced lifelong action plan to promote change
- Workshop 2: Commitment to Transforming Care
- Workshop 3: Working together on the next steps
Morning Workshop
Workshop 1: Using the coproduced lifelong action plan to promote change
Facilitators: Peter Baker, Jackie Edwards, Ashok Roy, Stephen Kingdom, and Clive Parry
The focus of this workshop was how the co-produced lifelong action plan could be used to promote change focusing on the following:
- What are the key messages from the action plan?
- Next steps for sharing the action plan
- Presentation format and style
- Considering any opportunities that exist and how these can be utilised
- Key stakeholders to reach, how and when do we reach them
- Considering examples of best practices to illustrate it can be done.
Attendees highlighted how the action plan could be used to promote change through:
- Collaborations with NHS England and housing
- Supporting competency framework for acute liaison nurses
- Improving representation of minority groups
- Improving early intervention keyworkers program/family support liaison work
- Emphasising that all professionals should be committed to seeing care through the lens of the 8 domains in the action plan
- Evaluating key working
- Working to twin ‘poorly performing’ and ‘positively performing’ areas
Afternoon Workshops
Workshop 2: Commitment to Transforming Care
Facilitators: John Verge, Wendy Ewins, Debbie Austin, Viki Baker, Julie Thorpe, Linda Hume, Jackie Clarke
This workshop focused on demonstrating commitment to transforming care with a particular focus on the following:
- What do we want to see happen to achieve the outcomes that so far have not been delivered?
- How do we make it happen?
- How will we know it is happening?
- What do we need to measure outcomes?
Attendees identified:
- The need to shift to listening to the individuals and their families about what would work (views and wishes)
- The need to incorporate families’ views and voices through surveys, continual engagement and a named worker or advocate who could advocate for them
- There is a need to ensure government initiatives link up with existing programs
- Ensuring the duration of stay of individuals with learning disability in hospitals is no longer than the rest of the population
- Investigating the individuals needed to be in inpatient provision compared to individuals who do not
- The need to focus on community-based support
- Framing language used and the importance of narrative
- The need to share high-performing organisations and ICSs with those which are low performers by highlighting what is going well and sharing this with those who may be struggling
- A need to start support as early as possible by looking at themes such as independent skilled facilitators or person-centred approaches and planning, as well as utilising a more proactive approach, which includes multi-disciplinary specialist
- The need to explore multiple costs not just in terms of person placement but also the systems and processes that support individuals
Workshop 3: Working together on the next steps
Facilitators: John Verge, Wendy Ewins, Debbie Austin, Viki Baker, Julie Thorpe, Linda Hume, Jackie Clarke
The focus of this workshop was discussing what we would be doing to take the work forward and highlighting some individual or joint actions.
Attendees identified what needed to be done to take work forward. These included:
- Actions to reinvigorating the person-centred approach by commissioners
- Investigating costings by looking at case studies
- Strengthening relationships with learning disability teams and housing associations
- Identifying what needs to be highlighted to commissioners in terms of housing, care, and support
- Shifting to proactive commissioning on a long-term basis
- Developing a resource for families highlighting the role of keyworkers for the family
Attendees developed actions around:
- Campaigning for a set of national standards for key workers
- Making sense of an individual’s journey from existing data collected and highlighting any gaps
Launches at the CB-NSG
There were several resources launched at the CB-NSG including:
- Advocacy resource for family carers
- Trauma film
- Accessing specialist legal support
Advocacy resource for family carers
The CBF worked with the Northwest and the Northeast and Yorkshire regions and has produced a comprehensive advocacy resource for family carers, this resource brings together information in one place that family carers told us they needed to know when they are required to advocate alongside or on behalf of their relative.
See Family Carer Advocacy Resource here
Trauma Film
This event also saw the launch of the trauma film – ‘Family Trauma: A Broken Care System’ a documentary produced by KMTV and commissioned by the University of Kent. This documentary showcased work by the University of Kent and the CBF, linked to work commissioned by NHS England. This had three strands, two of which were the production of the Broken report, the publication of an article about families’ experiences of trauma and the development of a training resource. This documentary was to showcase all the work put together.
Find out more about the CBF’s co-produced workshops here
Accessing specialist legal support
The CBF Legal Panel have produced a resource which aims to raise awareness that people with a learning disability and autistic people who are detained in a hospital might need specialist legal support. The resource is for families who have a relative with a learning disability and/or who is autistic who is currently in an inpatient unit or detained in inpatient units to let them know about how specialist legal help could help them.
Next Steps
This CB-NSG meeting and these actions are part of the CB-NSG’s work to coordinate a lifelong action plan co-produced by people with a learning disability, their families, organisations and people supporting and working alongside them. The suggestions made during the meeting will be used to plan the campaign for change.