This article shares what people have told us about what their lives have been like during coronavirus. It features restrictions, impact on physical and mental health, access to support and services and the impact of caring. We also looked at what support is available when someone dies. 5 Briefings have been published to share these findings. Summaries and links are found below.

In part 3 of the study, held between July and August 2021, 179 people with a learning disability (group 1) were interviewed which decreased from 183 people. However, the number of people completing an online survey on behalf of a person with a severe or profound learning disability (group 2) increased from 51 to 57.

Restrictions

We were interested to know where people with learning disabilities obtained information about changes to the Covid-19 rules. 73% said it was from watching television while 58% said they kept up to date by talking to family, friends or support workers. The restrictions had a detrimental effect on the lives of people with a severe or profound learning disability with 46% of family members and paid support staff reporting that the visitor restrictions made life worse for the person they supported. One parent reported “My son has only recently moved into a care setting so it is hard it is hard to judge.  But from my point of view I find it extremely distressing and difficult.  I think he does as well.”

53% of people with learning disabilities and family carers said that the paid support staff who supported them were wearing masks, gloves and aprons.  However 74% of people with learning disabilities thought everyone should wear a mask and follow social distancing. One person said “I’m happy that restrictions are starting to ease. But I feel very anxious that people are starting to not wear masks and socially distance.”

Read the easy read briefing on restrictions here:- https://bit.ly/3e6kF1Q

 

Impact on physical and mental health

We asked people with a learning disability if they had good health. 68% said they did while 10% did not. 74% told us they used to have a regular health check but of those, only 38% of people with learning disabilities had received a health check in 2021. 24% of people we spoke to said they were waiting for a planned medical test. Of those who were waiting, 45% had been waiting for 6 months or more.

The impact of the pandemic had an impact on the well-being of people with a learning disability. 12% of people we spoke to said they often or always felt lonely; 20% felt worried or anxious; 14% often or always felt sad or down and 15% felt angry and frustrated.

Parent carers and paid support staff of people with a severe and profound learning disability were very concerned about the impact on behaviour and well-being of the person they supported. The comments from 4 family carers / paid support staff are below:-

“There is a severe decline in his behaviour. He frequently walks about shouting and rocking. Sleep patterns are completely disrupted, and he has frequent bouts of temper and frustration. There is almost a complete unwillingness to cooperate with carers at home. “

“He is bored and frustrated. Exhibited some violent behaviour. Forced to spend too much time with housemates he didn’t choose. After some months became lethargic. Resigned to reduced life”

“Everything has changed, and her mental health has suffered. She has stopped eating and now has supplements from the dietitian. She has lost almost 9 stone in a year”

“They have less contact with friends, get bored at home and are sometimes frustrated and even grumpier. They eat more out of boredom and have put on weight”

Read the easy read briefing on impact on physical and mental health here :-https://bit.ly/3yWhCmJ

Access to support and services

Aa a result of the pandemic, there was a reduction to the support that was provided to the individual with a learning disability and their family carers. 32% of people with learning disabilities told us they got less support than they used but for concerningly for people with a severe and profound learning disability this increased to 48%.

44% of people with learning disabilities and 9% carers for people with severe or profound disabilities said that their service providers had asked them about changes to services. Parent carers or paid support staff of people with a severe and profound learning disability told us about the impact the changes to services is having on 2 individuals.

“She is frustrated at lack of meaningful activity and is not allowed to go to a day service that she used to enjoy, even though it has been open since April”

“Much less social interaction. Individuals now have to organise themselves to meet with friends in public places. This is obviously more risky than meeting at day centres etc (which are closed as they are deemed risky!)”

42% of people with learning disabilities we talked to were not sure when life would get back to normal. We were interested to know what would help people with a learning disability if there was another lockdown. One person said they would want support to keep busy and added “I’d like to be able to continue to access my studies” Another highlighted the important of having information in an accessible format “I’d like the government to speak to me in a language I understand -not jargon.” A third said they wanted help to get food and to “make sure that my cupboard is stocked up!”

Carers for people with severe and profound learning disabilities wanted more support from health services in lockdown. One asked that there be “no mass cancellation of procedures without planning what to do if someone cannot wait any longer”.

Read the easy read briefing on access to services here :-  https://bit.ly/3yMfcHc

 Impact of Caring

The reduction in support services for people with a learning disability meant that family carers and paid support staff had increased caring responsibilities which affected their well-being. 7 out of 10 family carers / paid support staff reported that they felt stressed while 8 out of 10 reported feeling tired. 4 out of 10 said that they had felt cross and the same number felt sad and depressed.

We asked people about how long they thought it would be before their life returned to how it was before lockdown. 27% were unsure when this might happen, 50% said next year or longer, 14% said maybe never and 9% said maybe by the end of 2021.

Three family carers shared their experiences on caring for their loved one in the pandemic :-

“As a family, we have worked around the clock to minimise the negative impact on our son. We are absolutely exhausted but as he is happy, it is worth it”

“It would be a help if the support worker turned up!”

My son cannot be left at home safely alone. The main impact has been on me. All the responsibilities are on me.”

A paid support worker commented :-

“The person I support used to have four days a week, now its 2 days every 2 weeks. This means his carer has an even greater workload

Read the easy read briefing on the impact of caring here – https://bit.ly/33zkz0C

Support when someone dies

33% of people with learning disabilities in our study were close to someone who died during the Covid-19 pandemic. They died from many causes. 37% of those people said more than one person had died during the pandemic. 40% said that the person who had died was a close family member.

When someone who is close to you dies people may need professional help to deal with this. Unfortunately hardly anyone with a learning disability had any help from a professional. A parent said of her daughter “It frightened her, as her friend was the same age, early twenties, and died in her sleep from epilepsy.” Parents were also affected when someone close to them dies. One said “My brother passed away. I feel I haven’t been able to grieve properly. It’s been very hard”.

Read the easy read briefing on support when someone dies here  https://bit.ly/3GXWfE3