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New research from Mencap reveals widespread loneliness

by Lisa Carr

New research by the learning disability charity Mencap reveals that people with a learning disability in the UK are facing a mental health crisis in the wake of the pandemic. 88% of families and carers surveyed said their loved one was always or very often felt sad, and 82% felt lonely due to rarely being able to leave their homes. Nearly a third (32%) were struggling with mental health issues, including suffering from low mood and low self-esteem. But 27% of those experiencing mental health problems still don’t know where they can go for support – an issue made worse by the fact that many people in society still wrongly believe that learning disability itself is a mental health condition. 

Alongside the survey findings, the charity has also published a new report funded by the Department for Digital, Culture, Media and Sport (DCMS). People with a learning disability who were interviewed for the report described their lives as a “prison,” with limited social contact causing them to feel suicidal. 

Many people found themselves isolated and unable to engage in activities which matter to them. Brendan Chivasa, 28, a Mencap campaigner who has cerebral palsy and a learning disability, became depressed during the pandemic and is still dealing with the repercussions: “One morning [in lockdown] when I woke up and looked in the mirror, there were tears coming down. No one could even come to my room. I cried and cried. I saw a counsellor for my mental health but after six weeks [the help] stopped. It wasn’t enough. I ask myself: do [people] care?” 

Jack Welch, Chair of Mencap’s Voices Council, which instigated the activity said: “Since introducing our paper, the work on this subject has made it clear that people with a learning disability should not be forgotten in the national conversation around mental health. There are some simple adjustments like adding mental health to annual health checks and hospital passports which can make a difference. But we also want to see more specialist mental health professionals, better support signposting and the re-instatement and preservation of vital services to protect people’s wellbeing.” 

As part of a new multi-year mental health campaign called ‘Listen To Us’, Mencap asked 580 family members and carers of people with a learning disability across the UK about their loved one’s experiences of mental health. While people with a learning disability have often struggled with social inclusion and finding opportunities to be socially active, the COVID-19 crisis left many struggling with increased periods of loneliness, fear and anxiety as they were advised to stay at home and shield from the virus. 

But now, as we ‘learn to live with COVID’, over two thirds (72%) of family members and carers of people with a learning disability say their loved one currently spends less time outside of the house than before the pandemic, with more than 1 in 10 saying they leave the house just once a week or less. Limited access to technology, coupled with lack of confidence and digital skills, has also exacerbated people’s isolation even further. 

When asked why their loved one was finding it more challenging to leave the house, just under half (47%) of family members and carers said reduced social care support was a barrier. Closure of day services, including day centres offering clubs, activities and support for people with a learning disability, have cut off a vital lifeline for many who relied on these services for socialisation, wellbeing and independence. 

Of those who reported their loved one’s social care provision had been cut, just under two thirds (63%) of respondents said services such as day centres had been temporarily closed, permanently closed, or reduced, and Mencap is warning that people with a learning disability cannot be left behind after lockdown without community support and connection. 

Over a year ago, the Government pledged to provide resources to ensure local authorities can deliver these vital day services as part of the Covid-19 mental health and wellbeing recovery action plan. Mencap is urging decision-makers to act now and provide high-quality, person-centred community support to prevent further social isolation and declining mental health. 

With families at breaking point and without these opportunities, there is a risk of irreparable damage to the mental health and wellbeing of people with a learning disability. 

Mencap ‘Myth Buster’ Brendan, 28, has cerebral palsy and a learning disability. During the pandemic, his family were only able to visit him at his supported living centre through the window. Staff shortages and safety precautions meant he spent most of his time alone. 

Socially isolated and unable to engage in activities which matter to him, he became depressed and is still dealing with the repercussions as he adapts to the pressures of the cost-of-living crisis on top of existing financial pressures; most of which exist because of his learning disability, and the lack of accessible opportunities which are open to him to meaningfully engage with and work in the community:

“The words I’d use to describe the pandemic are lonely, lost, frustrating. Being lonely means things are dark, not light. It happens when there’s no one around. No one to speak to. I sit and look at photos of my family on my phone.   

“One morning [in lockdown] when I woke up at 5am and looked in the mirror, there were tears coming down. No one could even come to my room. I cried and cried.  

“We need more opportunities for people with a disability. You finish education, then there’s nothing there [for people with a learning disability to do].   

“I saw a counsellor for my mental health but after six weeks [the help] stopped. It wasn’t enough. The money I get is not enough. It’s never enough. Mum did my food shopping the other day. It’s gotten more expensive. My care costs have gone up.   

“I ask myself: do [people] know what goes on behind doors? Do they know how it works? Do they care?” 

Sophie is 32 years old and has Down Syndrome. At the beginning of the pandemic, her day centre, which she’d normally attend Monday to Friday, was closed and she was left with no support outside of her family. Being unable to interact with people her own age had such an impact on her health, she developed a mild stammer. 

 Her sister Emily, who runs creative workshops for people with a learning disability via her company Down the Lens, shares their story:  

“My sister missed her day services tremendously in lockdown. She’d usually attend a variety of centres Monday–Friday and in lockdown these all had to close, leaving her feeling isolated, lonely and incredibly bored.

“She lost confidence and wasn’t practicing her communication skills. There was a real regression and she often felt down and anxious, which is simply not like her. We also suffered a bereavement as a family during this time and Sophie wasn’t able to process that loss as well as she could have if she was able to engage in meaningful activities and see her friends. She struggled to understand what was happening and we think she internalised that confusion and worry. 

“Since restrictions have eased, her speech has returned to normal, which shows just how much her wellbeing relates to her environment and how important it is that we meet the needs of people with a learning disability in the community. But where Sophie lives in Hull, there simply aren’t enough opportunities to engage in the things we know are so crucial to her mental health. She hasn’t been able to return to the activities and job she did before the pandemic and she’s still sat at home much of the time.” 

Sophie says: “I missed my friends at my day services and especially my boyfriend. I felt very lonely. I’m now able to do a bit more, but I can only go back to the day centre one day a week. It isn’t enough.” 

Experiences of mental health issues for people with a learning disability must not continue to be overlooked or underestimated. While learning disability and poor mental health are entirely separate issues- a survey earlier this year revealed that 28% of people in the UK still believe that learning disability relates to a mental health problem [i]. Everyone and anyone can experience mental health problems, and this research shines a spotlight on the urgent support that people with a learning disability need and deserve. 

If you are worried that someone you know with a learning disability and/or autism is at risk, you can contact Mencap’s Freephone Learning Disability Helpline: 0808 8081111 or email helpline@mencap.org.uk.  

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