Coronavirus and people with a learning disability: Sharing experiences and the first findings in Wales

On 17 May 2021, over 100 people attended an online event to share the first Welsh findings from a UK-wide Covid research study on the impact of the pandemic on people with a learning disability. You can find out more about the study on the website: www.covid19learningdisabilities.co.uk

The event was organised by the 5 organisations involved in the research study in Wales: Learning Disability Wales, All Wales People First, All Wales Forum of Parents and Carers, Cardiff University and University of South Wales. We heard from people with a learning disability, a family carer and a support worker in a residential college. We also heard from the researchers in Wales who outlined the Welsh findings.

Summary of Welsh findings

Professor Stuart Todd and Edward Oloidi from University of South Wales and Dr Stephen Beyer from Cardiff University shared headlines from the easy read research report. 149 people with learning disabilities had been interviewed to find out about their experiences of the pandemic. Where it was not possible for individuals to share their own experiences, 77 family carers or support workers had also completed an online survey on behalf of the people they support.

Health was a big concern. About half of the people surveyed said they had a health condition that made them worried about catching coronavirus. 4 in 5 were taking medication while 2 in 5 said they saw their doctor a lot before the pandemic. This reminds us that people with a learning disability are more likely to experience ill health than the general population.

Two thirds of people spoken to said they had been able to keep in touch with family and friends as much as they wanted. People found different ways of keeping in touch via online platforms and apps like Zoom etc. However, while they were managing to keep in touch, many felt that it wasn’t the same as seeing people face to face and 1 in 3 said they had felt lonely or anxious most or all of the time in the last few weeks before the interview. 1 in 5 said they felt sad or tearful most or all of the time.

On the subject of employment, 1 in 4 participants had a job prior to lockdown. Half of those people were still working while 1 in 3 were furloughed or had jobs being held open for them. Half said they worried about what the pandemic meant for their future employment prospects.

Experiences of people with a learning disability

Catherine shared her experiences of the pandemic, “It has been a rough year and from the start I felt awful. I had lots of health issues and my mental health has suffered. I had problems with my special shoes which meant that I couldn’t walk properly”. She added that this and appointments for her hearing took a long time to sort out. Her hearing problems meant that her independence was affected. Before the pandemic she went to hospital appointments alone, but more recently her mother had to accompany her as she couldn’t hear what was being said.

Louise lives in a care home annex and is fairly independent but needs some support. She found life incredibly difficult during lockdown as she has underlying health issues and had been shielding. Louise has also been unable to access the main house. During lockdown, the staff entered her annex in full PPE, did what they needed to do and then left. They were unable to do welfare visits and she missed this. She was incredibly lonely and relied heavily on her X-Box, computer, iPad, phone calls and craft opportunities. Life isn’t getting back to normal for her yet. The house rules are still strict. Her parents can visit in the garden only but she said, “It feels like a prison visit and I have not done anything wrong”.

Impact on families

Pauline Young, Chair of trustees at All Wales Forum of Parents and Carers, spoke about the impact of not being able to see her son, who lives in supported living, on her and the rest of the family. He needs constant reassurance that his family love him, need him and can see him. He finds it difficult to engage fully via Zoom. Not being able to see his family in person resulted in his mental health suffering, as did the mental health of his family.

Three quarters of the families the Forum supports suffered mental health issues during this time. They received no respite and were in real distress. Pauline added, “There is a real anxiety about how long term this is going to be and a genuine desire to unlock the damage that is still being done. Everyone’s mental health has suffered, and people are concerned about how things will be in the future. It is important that Welsh Government, Public Health Wales, and local government understand that people with a learning disability have taken the severest hit during this time.”

Support staff’s perspectives

Oliver, team Leader in a college for people with learning disabilities and autism, has worked throughout the pandemic. The mental health impact on students has been huge. The damage was done at the beginning of the pandemic with blanket rules. This meant that no families were able to visit and students were reliant on Zoom and Skype to keep in contact. Many have sensory issues and need family contact so online options have not completely met their needs. Some students lack capacity and are unable to understand the restrictions and have blamed the staff for not being able to see their family or go out on car journeys. This has resulted in relationships breaking down between staff and students.

In the past, staff had worked on developing social skills with the students. The lockdown has meant that students have been unable to access the community and resulted in a loss of confidence in engaging with people outside the college. Also, they have found maintaining social distancing and wearing masks difficult.

There has been a high level of staff absence. The increased use of PPE has caused difficulties as some students rely on facial expressions and body language to communicate. The staff were supportive of each other and displayed a high level of resilience. Students had the opportunity to explore their emotions and everyone’s understanding of mental health has improved.

Rob Symons is the manager of Able Radio, a media and training company for people with a learning disability and autism. On 17 March 2020, Covid seemed remote yet later that day they were told that services will close from tomorrow. Staff were furloughed and the management did their best to keep in touch with everyone through activities. Rob explained, “Lots of considerations has been given to the risk to physical health during lockdown but not the mental health impact. Many people were struggling with isolation and couldn’t do activities outside the house”.

Able Radio are back up to 50% capacity now. Better guidance for day services is needed as they are left trying to scrabble around and debate every single point with the local authority. This contrasts to the opening up of shops, restaurants and cinemas.

Questions and next steps

A ‘Question and Answer’ session concluded the event. One participant asked whether the statistics regarding well-being were different to the general population? Prof Stuart Todd explained that when the questions were devised, the researchers reviewed questions asked in other surveys so that the answers could be compared in the future but these comparisons have not yet been done.

Other participants asked when local authority day services would be re-opening. It was clear from the responses that this varied widely across Wales but one local authority was using the opportunity to carry out a person centred review on what future provision people wanted.

Part 2 of the study came to an end on 23 May. The number of people with learning disabilities interviewed increased from 149 to 184 and we retained 85% of participants from part 1 of the study. 51 family carers or support workers completed an online survey on behalf of people with a learning disability. Part 3 of the study will begin in mid-June. We will not be recruiting anyone new into this part of the study so only previous participants will be invited to take part.

Another event will be held on 21 June to provide further updates from the study but the main focus will be on influencing future policy development. The co-chairs of the Learning Disability Ministerial Advisory Group (LDMAG) and representatives from relevant Welsh Government departments will be attending the event. People have told us that life has been hard but with the right support it can get better and we want to ensure that the findings of this research study help shape future policy and practice across Wales.