To mark Learning Disabilities Week 2021, the West of England Learning Disabilities Collaborative looks back on the last year. The collaborative was established in 2019 in response to the Learning Disabilities Mortality Review (LeDeR) Programme, which found that the disparity between the age of death for people with learning disabilities and the general population was 22 years for males and 27 years for females, and that many of the deaths continued to be due to avoidable causes.

The collaborative was set up with three key priorities: increasing flu vaccinations and annual health checks, and improving management of deterioration. The launch and subsequent learning event at the end of 2019 were hugely popular and well-attended, and many more face-to-face events were planned for 2020.

Collaborating during a pandemic

When the collaborative’s planned activity was put on hold in response to the COVID-19 pandemic, the West of England AHSN quickly re-evaluated how best to support the learning disabilities community. Determined to continue to bring our 300+ members together, we hosted our first virtual collaborative event in June 2020. The content included a national update from the LeDeR team on the effects of COVID-19 on people with a learning disability and updates on the local position from both Milestones and Brandon Trusts, as well as guidance on continuing to provide essential services, such as annual health checks, through remote consultations.


A pivot to virtual events

Following the success of our first virtual event in June 2020 (see above video), which had almost 100 attendees, we have continued to host virtual events every 6 weeks with topics based around our three key priorities, including maintaining physical health during COVID-19, Annual Health Checks, advance care planning, using technology to support people with a learning disability, and mental capacity assessment. Based on feedback from our early events we now strive to include experts-by-experience or carers in every agenda, and plan to continue hosting remote events for as long as they are of benefit to the community.

Working with NHS England

In late 2020, based on the success of our regional work with care homes on RESTORE2, the LeDeR recommendation to empower families and carers to be able to raise concerns, and in line with the collaborative’s third aim of managing deterioration, the AHSN was commissioned by NHS England to support and enable the delivery of RESTORE2 Mini training to 5000 paid and unpaid carers of people with a learning disability. To achieve this we first produced a series of videos supporting carers to recognise when someone may be unwell. The videos are hosted on Health Education England’s YouTube channel, and have now been viewed over 8000 times.

In the second phase of this commission 167 ‘Super Trainers’ were trained to use RESTORE2 Mini – those trainers have gone on to teach over 8000 carers to recognise the soft signs of deterioration, and to raise their concerns.

Key to developing the video and training was co-creation, and working with us was one of our experts-by-experience Andrew Bright, who is Head of Development at Thera Trust:

“RESTORE2 will make such a difference and save lives. From my own personal experience of taking part in the training and watching the videos; I feel like they will make a huge difference, and from my own point of view I felt included in the work”.

Louise George, Senior Project Manager at the West of England AHSN, said:

“In early 2021 the collaborative was officially ‘taken off hold’ with the steering and focus groups quickly reformed – with their support we are now developing a series of videos to improve the uptake and quality of annual health checks, in line with our key priorities. Recently the AHSN team behind the collaborative were able to meet face to face for the first time since the pandemic to discuss ideas for the coming year. We never know what is around the corner, but the collaborative aims to continue to adapt to the needs of the learning disabilities community – we cannot wait to see where the next year will take us”.

To find out more about the West of England Learning Disabilities Collaborative, including signing-up to receive newsletters, please visit our collaborative webpage.

Posted on June 14, 2021

> Back to index

  twitter   facebook   linkedin