Posted on April 29, 2022

We established the West of England Learning Disabilities Collaborative (LDC) in early 2019 bringing together individuals and organisations from across the region interested in the care of people with a learning disability and experts by experience, with a focus on three priority areas:

  • Improving recognition of deterioration through use of soft-signs and National Early Warning Score (NEWS2).
  • Promoting the uptake of flu vaccinations (for both care staff and patients) and the use of reasonable adjustments such as the nasal vaccine.
  • Supporting increased uptake and quality of Annual Health Checks (AHC).

The LDC provides a space for collaboration, cross-system working and sharing of good practice in a way that did not previously exist in the region.

The overarching aim of the collaborative is to reduce the inequity in care for people with a learning disability that has been identified nationally through the LeDeR (Learning Disabilities Mortality Review) programme.

Read our blog on how the LDC was formed.

In October 2021 the LDC team presented to the West of England Patient Safety Collaborative Board. Watch their short presentation which gives an overview of the LDC’s work and why co-creation is vital to its effectiveness:

The challenge

It is estimated that approximately 2% of the adult population has a learning disability. On average, people with a learning disability die 20 years younger than their peers. Many of these deaths continue to be from avoidable causes, such as pneumonia and sepsis.

Whilst the healthcare needs of people with a learning disability have been considered throughout our project cycles at the AHSN, we had never before undertaken a specific project for people with a learning disability. The collaborative aims to put people with a learning disability, their carers and the healthcare staff that support them at the centre of our work. Read our blog on the importance of co-creation to the LDC.

The LDC advocates use of NEWS2 and soft-signs tools including RESTORE2 to support early identification of physical deterioration in patients. “Soft signs” training (including RESTORE2 and RESTORE2 Mini) is particularly valuable in the management of deterioration where individuals have difficulties in communicating when they are feeling unwell or in pain including in care homes for people with a learning disability or developmental needs.

Our approach

The collaborative’s first priority is to build on the work across the region to implement NEWS2 and expand into the learning disability sector, incorporating the use of soft signs through RESTORE2 training. Based on the recommendation from the LeDeR programme to empower carers, and the success of our RESTORE2 training for care homes (including learning disability settings), and in collaboration with Wessex Patient Safety Collaborative (PSC), we were commissioned by NHS England to train 120 ‘Super Trainers’ to deliver training remotely to paid and unpaid carers across the UK. The training and resources were co-created with people with a learning disability, carers, and supporting organisations, and this has created the potential for the training to be delivered by people with lived experience. To accompany this training, we worked with partner organisations to develop a series of short, bitesize videos in plain English. These include measuring heart rate, oxygen levels, temperature, how to recognise soft signs, and how to tell someone if you are worried.

To support our second priority during the 2019 flu vaccination season we collaborated with NHS England to produce a flu vaccination communications toolkit, including easy read information about the flu vaccine, for providers to use to promote uptake for people with a learning disability and their carers. We also had the NHSE website updated so that people with a learning disability were explicitly mentioned as being at risk. The toolkit is now updated and re-released each year. We also contributed to a letter for care workers to give to their GPs to obtain the vaccination for free, based on feedback from our members that they were being told they were not eligible for a flu vaccination and turned away.

Improving the uptake of annual health checks is the third aim of the collaborative and remains a high priority for systems and NHS England. Initially we were commissioned to increase the uptake of annual health checks through meetings and workshops. We were subsequently commissioned by NHS England South West to produce a series of videos that encouraged greater uptake of annual health checks for people with a learning disability. The videos were co-created and produced with Misfits who are a theatre and social group led by people with learning difficulties. We also collaborated with a number of experts by experience to produce these videos. The videos were published in October 2021 and cover a range of audiences including health professionals working in primary care, with a second playlist focusing on people with a learning disability and those that care for them.

In addition, we established a community of practice with over 300 members including representation from NHS England, our member organisations, Public Health England, Royal College of GPs, community learning disability providers, the local LeDer team and experts by experience. This is a hub for sharing best practice and information. A wide range of webinars have been held and members are sent a quarterly newsletter. We have also co-created videos and resources to support, amongst other campaigns, the uptake of covid boosters and oral healthcare.

Since March 2022, through Blue Stream Academy, RESTORE2 Mini is available as a free e-learning module to all carers (paid or unpaid).

Impact to date

  • In February 2021 we delivered the ‘Super Trainer’ RESTORE2 model to 167 experienced trainers, who by the end of May 2021 had trained over 7000 paid and unpaid carers, with training continuing to be delivered across the country.
  • The bitesize deterioration videos have had over 44,000 views and were 2021 finalists as part of a wider series on deterioration for a HSJ Patient Safety Award.
  • Our work was highlighted in the LeDeR Action from Learning report on sepsis
  • NHS England reported a 57% uptake of flu vaccinations in our region in November 2021 which is higher than the national average of 50%.
  • We campaigned for COVID vaccinations for people with a learning disability when this vulnerable group were not initially included on the priority list for vaccination. We contributed to a letter to the House of Lords which resulted in the list being updated in February 2021.
  • We presented our work to support the uptake of annual health checks at the September 2021 HSJ Patient Safety Congress with Andrew Bright, Head of Development for Thera Trust, an expert by experience.
  • Most recent data shows that 72% of people with a learning disability in the West of England accessed an annual health check.
  • We produce a regular newsletter to share best practice and resources which is sent to our collaborative of more than 300 members.
  • We have run a series of seven webinars on topics such as advanced care planning, physical health, and mental capacity during Covid-19 which had more than 560 attendees.
  • To March 2022, over 2240 care staff have been trained in use of RESTORE2 or RESTORE2 Mini with 417 West of England care providers participating.

To illustrate how RESTORE2 training has improved patient outcomes and care staff confidence in communicating at the handovers of care a series of ‘in our words’ case studies have been collated. These illustrate the positive personal impact training has had on care staff, their patients and teams.

Key to developing the LDC’s soft signs videos and super-trainer model 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”.

Next Steps

The West of England collaborative ceased in its current format in March 2022. In early 2022/23 the collaborative is being relaunched to cover the entire South West region. The new South West LDC will be funded and delivered in partnership with NHS England South West.

The reformed collaborative aims to share learning and best practice across the South West and focus on the adoption and spread of tested diagnostics, products and technology that supports both people with, and those who care for people with, a learning disability.

Find out more

Find out more by visiting our Learning Disabilities Collaborative webpage or email us.

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