Improving the health and wellbeing of people with learning disabilities in the South West

What was the aim?

This project aims to use remote monitoring and digital tools to improve outcomes, transform working cultures and build closer relationships between service users, carers and clinical teams. In particular, it is hoped that the project will:

• increase the uptake and quality of annual health checks for people with learning disabilities enabling clinical staff to monitor and treat medical issues proactively
• improve the health and wellbeing of service users through earlier interventions, increased screening and improved vaccination rates, as well improving the individual’s own self-management of their wellbeing
• support the NHS’s wider efforts to track and manage potential COVID-19cases using digital technologies to monitor symptoms and prevent the spread of infection, reduce health inequalities for people with learning disabilities through better monitoring of existing health conditions and more personalised health plans

Background

In this case study, we explore an initiative underway in the South West, which is supporting people with learning disabilities to improve their health and wellbeing. Led by an integrated team spanning primary, secondary and community care, it seeks to reduce health inequalities and help clinicians and carers to collaborate more effectively to improve outcomes.

People with learning disabilities typically experience poorer health outcomes than others, and face particular difficulties managing long-term conditions such as diabetes, arthritis, heart and respiratory problems.

Annual health checks are a key way of monitoring the health and wellbeing of people with learning disabilities and increasing their uptake is vital to ensuring patients can enjoy healthy lives.

The digital tools being deployed in the South West empower people with learning disabilities to manage their own health while improving the way health and care teams are able to work together on their behalf.

Key facts

• People with learning disabilities are twice as likely to die from an avoidable medical cause of death. (Source: Learning Disabilities Mortality Review, 2020)
• The NHS long term plan pledges to ensure at least three-quarters of all people with learning disabilities have an annual health check.
• 56% of local people with learning disabilities have had an annual health check. (Source: Bristol, North Somerset and South Gloucestershire CCG)
• 35% of local people with learning disabilities have a health action plan in place. (Source: Bristol, North Somerset and South Gloucestershire CCG)

What was the solution?

Three digital tools are being used to enable people with learning disabilities to self-manage their conditions, and allow health and social care professionals to remotely monitor their patients effectively.

HearMeNow offers a range of functions to help people manage day-to-day activities and goals. Users can keep records to:

• remind them to eat well, exercise and drink water
• create videos and audio files to make interactions with dentists and other community services less intimidating
• share their successes with family, friends and care providers

BrainInHand is a digital self-management support system offering a suite of tools for managing anxiety, remembering things, planning, making decisions and solving problems. The app also features a traffic light system so users can alert their support workers when they need extra support or urgent help.

Remote monitoring will be improved through a sensor-based system aided by artificial intelligence to support people in their homes. It will allow health and care professionals to learn about a person’s normal routine and how it affects nutrition, hydration, independence, activity and overall wellbeing. A dashboard highlights any unusual patterns which can be followed up as appropriate.

What was the impact?

The technology is intended to enhance clinical practice and allow for a deeper relationship between clinical teams, carers and the service user themselves by reshaping key working processes, as set out below:

1. Patients use these digital tools to log their symptoms, feelings and concerns as they occur to create a rich bank of information about their ongoing health and care needs.
2. Carers and GPs access that information via the digital support systems to get real-time insights into the lives of their patients.
3. The data should then help to transform the way GPs deliver annual health checks enabling deeper conversations and earlier interventions where needed.
4. The health action plans resulting from an annual health check can then be linked to the digital tools so patients can track their progress against key outcomes.

Expected benefits

• GPs can review the data captured by the digital tools in advance to identify longer-term patterns of behaviour or symptoms.
• The annual health check consultation can become more focused on key concerns so treatable medical issues can be addressed earlier and more proactively.
• Access to a holistic set of data enables the wider mental health and wellbeing of the patient to be monitored and factored into all check-ups.

The subsequent health action plan can be constantly monitored and reviewed through the tool to form a continuous discussion about the person’s health and wellbeing.

Key actions and insights

1. Plan

The project is directed by a planning group that spans health, social care, academia, primary care and care providers. It brings together all of the services that people with learning disabilities work with, ensuring data gathered by the digital tools can be used to inform all clinical and care decisions.

2. Recruit

Patients for the early adoption programme are being selected from GP practice areas with a high proportion of learning disabilities and a high rate of annual health checks so the impact of the digital technologies can be seen quickly.

3. Initiate

Induction sessions are being held with health and care professionals and service users, helping to familiarise them with the new apps and platforms and provide a forum for discussing any concerns or problems they might have with the technologies. Feedback will be shared with the developers to improve technologies further.

4. Support

A peer network will change the way that health and care professionals interact, bringing together all of the GP learning disabilities leads in the region and include learning disabilities champions that will each support 10-15 people to use the digital tools. This network will facilitate the sharing of best practice and increase collaboration to improve frontline clinical practice. A programme manager has also been appointed to oversee roll-out, including the training of staff and service users.

5. Monitor and review

The number of annual health checks completed will be monitored along with the quality of health action plans, vaccination uptake rates and early interventions of medical conditions. At the end of the project, a full evaluation and lessons learnt workshop will take place, with results helping to shape future planning across the region.

Key lessons and next steps

Putting people first: the human perspective

As part of a wider regional focus on improving the health and wellbeing of people with learning disabilities, the new technology, tools and working practices are intended to support individuals with learning disabilities to enjoy healthier and fuller lives in a range of different ways. Particular benefits for individuals include:

Making it easier for them to communicate their needs

People with learning disabilities sometimes find it difficult to communicate with doctors and care givers, which makes it harder to provide them with the right support. These digital tools are particularly useful for helping non-verbal individuals and those less able to describe their symptoms.

Helping them to engage with confidence

Each of the digital technologies is designed to help people with learning disabilities engage more positively with services and feel a greater sense of control over their interactions with their support networks, giving them more choice and independence. They will also help clinicians to build better relationships with their patients.

Supporting healthier lifestyles

People with learning disabilities will be empowered to manage their own mental health, nutrition, exercise and personal care on an ongoing basis, while still maintaining remote contact with their health and social care providers. This should help to improve their overall health and wellbeing over the long term.