People with learning disabilities face significant health inequalities. NHS Digital reported that those with learning disabilities would be between 3.9-4.2 times more likely to die than those with broadly the same characteristics in the general population, the NHS Long Term Plan also recognises this as a priority area.
Changes implemented as part of the pandemic exacerbated these inequalities as services were distanced from carers and users, with closures of group care facilities and community-based centres. People with learning disabilities suddenly lost their usual routines and interactions, which increased the risk of their mental health deteriorating. One UK study showed that 42% of respondents with learning disabilities reported that their mental health was ‘much worse’ during lockdown due to a variety of factors including lack of access to resources. Face to face support was no longer possible and it was increasingly more challenging for professionals and carers to monitor wellbeing and behaviour.
As part of the NHSX Techforce19 initiative launched in the first year of the pandemic, supported by the AHSN Network, the RIX Multi Me Toolkit was selected to be funded as one of the digital solutions to support people particularly vulnerable to the effects of isolation.
The RIX software provides an innovative and secure online support network co-designed to be made highly accessible for people with mild or moderate learning disabilities, or with dual diagnosis of learning disabilities and autism. The system aims to replicate the contact and communication capability normally provided face to face by health and social care workers using multimedia features. It enables users to organise and communicate their thoughts and feelings, and share their needs and experiences with their professional, friendship and family support circles.
Six organisations participated on the ‘Stay Connected’ project between April 2020 and April 2021, comprising two London-based local authorities, three supported living organisations in North London, Surrey and Cornwall and a special education school in Herefordshire.
In an evaluation of this project completed in 2021, 95% of supported users and 90% of staff found the RIX Multi Me Toolkit easy to use and affirmed that they liked using the system on a regular basis.
The evaluation provides useful learning for all technology projects in health and social care as it highlights some of the significant challenges for staff and service users faced during the pandemic.
For example, at one of the supported living homes participating in the evaluation there were 13 members of staff and all the supported users ill with coronavirus at the same time. Despite this very difficult situation, the users created a ‘Covid-19 club’ on the ‘Stay Connected’ system to help those who were feeling depressed and unwell, isolated in their rooms. They reported that using the RIX Multi Me software and online activity helped everyone to stay connected, improved their morale and their wellbeing.
A supported living provider in Cornwall used the software’s diary tool to record case management notes alongside photos of daily activity with supported users on the system. By using the system, staff were able to improve the monitoring of mental wellbeing and encourage people to pursue daily activities and share achievements. They were also able to maintain and monitor progress on outcomes-based care plans that were developed using a person-centred planning template on the Rix system. The organisation’s leadership reported that the tool proved indispensable as part of their response to the challenges of the pandemic.
As with other technology platforms, this project has also highlighted significant digital exclusion issues prevalent in this user group, which prevented a great deal of users from trying out this technology. The evaluation report stated:
“For a significant proportion of organisations and their staff and service users, the practical barriers to online working could not be resolved due to a basic shortfall in access to devices, internet connectivity and availability of people with basic technical skills.”
One organisation reported that out of 20 service users, only seven had access to devices.
Universal access to digital infrastructure is a critical issue in relation to providing a blended approach to supporting vulnerable people. We are moving into a future where digital solutions can be a valuable option and as the pandemic has shown, can help us to maintain services during a crisis.
For example, the NHS is currently tackling a huge elective care backlog. Tools such as this have huge potential to be vital communications support for patients with learning disabilities and autism both before and after operations.
Despite highlighting issues in digital accessibility, this project has provided strong evidence that co-designed, robustly tested digital tools can play a key role in helping to reduce health inequalities and to deliver better person-centred care. There are significant obstacles to overcome, but I am certain that technology can contribute to enabling vulnerable groups to live independently with improved health and wellbeing.
Read the full evaluation report.