In this new blog post Susie Beresford, Senior Project Manager, celebrates Learning Disability Week (16 – 20 June 2025) and reflects on the theme “Do you see me?” in connection to the South West Learning Disability Collaborative.
As Learning Disability Week 2025 begins, it feels like the perfect time to reflect on the progress we’ve made and the work still ahead to ensure that individuals with learning disabilities are seen, heard, and valued in every aspect of life. This year’s theme, “Do you see me?”, resonates deeply with our core values at Health Innovation West of England and the Health Innovation Network’s Diversity Pledges.
What is the South West Learning Disability Collaborative (SWLDC)?
The SWLDC is an NHS England South West initiative, hosted by Health Innovation West of England, aimed at improving the lives of people with learning disabilities across the South West and beyond. By fostering collaboration among NHS trusts, local authorities, charities, and academic institutions, the collaborative works to improve health outcomes, promote inclusion, and ensure that care pathways are accessible and effective.
“Do you see me?”: Patient and public involvement and engagement and why experience matters
In healthcare we increasingly recognise the importance of the person-centred approach. When people share their lived experiences and insights, it ensures that those who use healthcare services are active partners in decision making and service improvement. Collaboration and co-creation improve the quality, relevance and effectiveness of resources and build trust between healthcare providers, patients and carers. This is especially important for people with a learning disability, who face additional barriers and avoidable health inequalities.
The SWLDC and its members champion these principles through webinars, workshops and resources such as a series of videos co-produced with members of the Misfits Theatre Company, on the subject of Annual Health Checks, and a guide for researchers: Improving Inclusion of People with a Learning Disability.
The contribution of experts by experience is always thought provoking; at a recent webinar when end of life planning was being discussed, one of our experts asked, ”How will people know I am dead?“ Such a simple question but one for which so many would like to know the answer, and the discussion that followed was rich and informing.
Improving experience of care for people with a learning disability
People with a learning disability are known to die on average 20 years younger than the general population so, although progress is being made to ensure a more person-centred approach, there are still many ways care can be improved.
The NHS has identified three guiding principles to improve experience of care, all of which are embedded in the work of the SWLDC:
- Co-production with people who use services
Understanding what matters most to patients, carers, and staff. - Using feedback from people who use services
Listening to what works, what doesn’t, and how people feel. - Embedding experience of care in all work plans
Considering the impact of people’s experience and tackling health inequalities.
The SWLDC continues with the broad remit of improving the lives of people with a learning disability and is now actively collaborating on a national programme to reduce the prescribing of psychotropic drugs in people with a learning disability.
For more information on the SWLDC and to get involved, visit www.healthinnowest.net/SWLDC
The South West Learning Disability Collaborative has recently published an impact report on the work the collaborative has achieved so far and looking forward to the next steps.
Posted on June 13, 2025 by Susie Beresford, Senior Project Manager
