Listen to Us: Mencap’s mental health campaign

Paul Donnelly, Head of Campaigns at Mencap, introduces the ‘Listen to Us’ campaign which is shining a light on the mental health challenges faced by people with a learning disability.

Introducing the ‘Listen to Us’ campaign 

At Mencap, everything we do is guided by the voices of the people we support.

The COVID-19 pandemic was a difficult and lonely time for many, but particularly for the 1.5 million people in the UK living with a learning disability. People with a learning disability were advised to shield from the virus – including adults with Down’s Syndrome in the clinically extremely vulnerable group – which for many, turned their lives upside down.

Many were unable to meet with others, or attend community groups and activities, and some could only communicate with their family and friends through a window. It’s only now that we are truly emerging from the effects of the pandemic. That’s why in May 2022, Mencap launched ‘Listen to Us’, our multi-year mental health campaign, which has been driven by what people with a learning disability have shared with us about their ongoing experiences of loneliness, social exclusion and poor mental health as we recover from the COVID-19 crisis.

How the campaign was developed

The idea for the campaign started with Mencap’s Voices Council, a group of advisors with a learning disability who guide Mencap on organisational priorities and decisions. An alarming report by the Voices Council revealed that the mental health experiences of people with a learning disability during the pandemic has been completely forgotten and overlooked.

Our work began with carrying out a survey and producing a report into the impact of COVID-19 on the mental health and loneliness of people with a learning disability, which was funded by the Department for Digital, Culture, Media and Sport (DCMS). Many of the 580 people we spoke to felt overwhelming lonely, and they wanted both the public and healthcare professionals to understand that people with a learning disability can struggle with their mental health just like anyone else.

Some people with a learning disability who were interviewed for the report described their lives during COVID as a “prison,” with limited social contact and the closure of essential day services – which offer clubs, activities and support for people with a learning disability – some even experienced suicidal thoughts because of how low they felt.

Our campaign was also shaped by the stories DCMS captured from their mental health focus groups, as well as our Mencap Myth Busters, a group of ambassadors who challenge misconceptions about what living with a learning disability looks like. We heard from Kathy and Fiona’s mum, who told us about their experiences during the pandemic. Kathy, who is a single mum, spent most of the pandemic by herself and was devastated to be separated from her children, meanwhile Fiona, who lives with her family, developed obsessive compulsive behaviours after having all support – including care staff, day services and support from extended family – suddenly stop.

Before the COVID-19 pandemic, people with a learning disability already faced serious levels of social isolation and loneliness, but our research has shown that in the wake of the pandemic, they’re facing a mental health crisis. 82% of people said they feel lonely due to rarely being able to leave their homes and 88% of families and carers surveyed said their loved one was always, or very often felt sad.

We also discovered that mental health services for people with a learning disability are seriously underfunded and under-serviced – a problem made worse by the fact that 28% of people still wrongly believe that learning disability and mental health issues are the same thing.

As society returns to ‘normal’ after the pandemic, we know that many people with a learning disability are continuing to experience poor mental health, as well as prejudice because they continue to take precautions against COVID, such as wearing face masks. There is a lot of work still to be done, and that starts with providing more specialist mental health services for people with a learning disability, and for day services, many of which were suspended or closed during the COVID-19 crisis, to be fully reinstated.

People with a learning disability are at the bottom of the agenda when it comes to providing mental health services and support, and this cannot continue. The people we support cannot be left in the dark, and we will be working with them, alongside their families and carers, to address this forgotten crisis.

Useful contacts

If you think you or someone you care about is experiencing a mental health problem and would like to talk to someone about it, please call Mencap’s Learning Disability Helpline on 0808 808 1111.

For more information on Mencap’s mental health campaign, please visit www.mencap.org.uk/listentous.

If you or anyone you know is going through a difficult time, please call Samaritans free on 116 123. Samaritans are here to listen, no judgement, no pressure, and help you work through what’s on your mind.

About the data

Mencap ran a survey with 580 family members and carers of people with a learning disability in the UK. The survey ran for 3 weeks from 07/02/2022 to 28/02/2022 and was hosted on Alchemer. The survey was conducted by Opinion Matters, surveying 2,001 nationally representative UK adults, between 01.10.2021 –05.10.2021.

The original paper by the Mencap Voices Council which sparked this work can be found here.