People with a learning disability are seven times more likely than their non-disabled peers to be lonely and it is a significant driver of poor wellbeing and mental health in this group.
This year Mental Health Awareness Week (9-15 May) is aiming to raise awareness of the impact of loneliness on our mental health and the practical steps we can take to address it.
These steps include taking a strategic approach to loneliness, developing the community resources needed to tackle loneliness, and ensuring that everyone has access to digital communication technology, and the skills to use it.
All strategies that would have a huge impact on the quality of life of people with a learning disability.
Learning disability and loneliness
Loneliness was the main driver of feelings of anxiety among people with learning disabilities and/or autism, in a Learning Disability Today survey conducted at the start of the Covid-19 pandemic.
The survey was part of our Change It Up campaign and we spoke to a total of 104 people about their experiences with their health, with the overarching aim of discovering views and lived perspectives on how they would like their care, support and accommodation to be designed and commissioned.
- Watch the new Change It Up video: How to 'change up' healthcare experiences for learning disabled and autistic patients
Learning disability charity Hft also recently surveyed more than 1,000 members of the general public who have a learning disability and found that a third of people surveyed felt lonely nearly always or all the time.
A similar number of people (37%) said they hardly ever or never go out to socialise, while a third (33%) said they did not feel part of their local community.
Unmet support were identified as a key driver of loneliness with a quarter of people surveyed (24%) saying they did not have enough support to go out into the community, while two thirds (66%) said they would like more support to do social activities and make friends.
Public attitude also played an integral part in exacerbating feelings of loneliness, with almost four in ten (38%) saying they were worried people will not understand their disability and a similar number (39%) saying they were worried people would be unkind.
Role of social care in addressing loneliness
The Hft report highlights the vital role that social care plays in supporting people with a learning disability to participate in everyday social activities.
As a result of these findings, Hft have called on the government to use the social care reform as an opportunity to tackle the key drivers of loneliness identified in the report. They make a series of recommendations, including ensuring the inclusion of funding for activities which support friendship and connection as part of an individual’s care package.
- Further reading: Stay Up Late: the charity hoping to end the chronic loneliness felt by people with learning disabilities
Victoria Hemmingway, Policy and Public Affairs Manager for Hft said: “For many people with a learning disability, loneliness hasn’t been restricted to the pandemic; it is a chronic and long-term experience. By identifying the drivers of loneliness and taking action to combat these barriers, we have the opportunity to make positive change as we rebuild our communities, ensuring that no one with a learning disability spends a lifetime feeling like they are still in lockdown.
“Hft’s vision is for a world in which people with a learning disability can live the best life possible. This must include having equal opportunity to make and maintain friendships and be part of a community.”
Technology and loneliness
The Mental Health Foundation says that regardless of individual preference, digital exclusion is a significant barrier for people to achieve their desired quantity and quality of social relationships.
Whether digital access would be a supplement and facilitator to in-person socialising, or a means of feeling a part of a global sub-culture, being digitally excluded removes these options. This has been especially obvious during the pandemic when so much communication was forced online.
Use of technology and loneliness was one of the major themes in a recent Mencap report on the impact of the Covid-19 pandemic on mental health.
The charity interviewed six focus group totalling 32 participants including people with a learning disability and or/autistic people and carers.
Participants said that although technology helped people keep in contact with their loved ones during the pandemic, it was as inadequate substitute for ‘real-life’ interaction and did not always successfully combat feelings of loneliness or isolation. Furthermore, the pandemic often placed strain on existing relationships, particularly for people who were unable to communicate via alternative means such as the internet.
The report also found that for some people communication was impeded by not having access to the internet or technology, others did not have the skills or knowledge to be able to use these devices; though some participants discussed learning new skills, such as how to make a video call, during the pandemic.
Loneliness was cited by many participants as one of the factors contributing to poor mental health. With fewer distractions in daily life, and reduced social contact, some people mentioned having more time to overthink and experienced an increase in negative thoughts.
Vijay Patel, Campaigns Assistant at Mencap and who has a learning disability, said: "Fear of abuse or not having any support to be independent means that people with a learning disability might not be able to leave their homes and get out and about, and you’ve got a ‘perfect storm’. We’re now seeing high levels of loneliness facing people with a learning disability.
“I was lonely for years. I found it hard to get a job, I felt anxious travelling and I ended up being stuck at home a lot because I didn’t always have anyone to support me to go out. I was beginning to give up hope. But it all changed when Mencap supported me and helped me get a job. Now I get out of the house and I’ve made new friends. I am more confident and independent – I’m captain of my football team."
Reducing isolation and loneliness
The first ever government cross-party loneliness strategy was launched in October 2018 and set out the approach to tackling loneliness in England.
The strategy set out three objectives:
- Improve the evidence base on what causes loneliness, what works to tackle it and how it can be measured.
- Embed loneliness and the importance of social relationships across government policies.
- Tackle stigma around loneliness and encourage reaching out for help.
‘Social prescribing’, where people are supported to join community groups and activities, was a main feature of the 2018 strategy and continues to be a prominent theme in preventing loneliness.
Yet Mencap says that there are barriers that need to be addressed first to allow people with a learning disability to access leisure and social activities. These include: inaccessible venues and facilities, lack of inclusive activities, lack of support, financial constraints, lack of accessible information, mobility and transport difficulties and negative attitudes towards disability.
The charity says people with a learning disability need to feel empowered and included in all aspects of their lives through a range of programmes such as inclusive sports programme in schools, supported employment programmes, friendships and relationships programmes like Gig Buddies as well as receiving personal support to help people with a learning disability lead independent and fulfilling lives every day of the year.
In the recent Hft report Lou, from North Wales, shared her personal experiences of loneliness and isolation, having moved to a new home in a different area on her own shortly before lockdown began. She said the turning point for her was joining Luv2meetU, a friendship service for adults with learning disabilities run by Hft.
Lou said: "I felt all on my own. I was in a new place and I didn’t know anybody. It felt very strange and scary. I had sometimes felt lonely before, but being in lockdown made it worse. I felt like I was in a bad place. Now I am a different person. I feel so much better in myself. Joining Luv2meetU has helped me with my self-confidence and has really brought me out of my shell. I think everyone should have the opportunity to make friends."