A few months into the first lockdown, the weekly ‘clap for carers’ began. It was not always popular, and is even less so now. It also ignored the huge number of people providing informal care, and whose responsibilities have piled on over the past year.

A recent research study has charted the alarming effects on the mental health of family and other informal carers of people with learning disabilities.

The study, first published in the Journal of Applied Research in Intellectual Disabilities, surveyed 107 carers for adults with learning disabilities; 100 carers for children with learning disabilities; and 37 carers for children without learning disabilities. The researchers have now followed this up with more detailed in-depth interviews with a small number of carers.

The picture was not entirely negative, especially from some of the interviews. “A few parents could see the benefits of lockdown,” says co-author Dr Biza Stenfert Kroese, who is a senior lecturer and consultant clinical psychologist at the University of Birmingham. “They didn’t have the pressure of getting ready for school and they were able to be at home with a consistent routine and without other people involved. Some were even able to reduce medication.”

Another thing that had positive elements for everyone – including a number of people with learning disabilities themselves – was the increase in the use of technology like Zoom. “Older carers really liked being able to communicate with professionals and their peer groups,” explains lead author Paul Willner, Professor Emeritus in the psychology department at Swansea University. That, he suggests, is something that should be explored and extended.

Carers of people with learning disabilities had greater mental health needs

However, the overall trend was definitely downward. Compared with parents of children without disabilities, the carers of people with learning disabilities had greater mental health needs, and over the past year their levels of anxiety, depression and similar symptoms had increased.

They were also having to cope much more on their own – not just because day services for adults were closed (and a huge proportion of children were kept home from school, even though special schools remained open), but because they received much less support from friends, families and neighbours. It is clear, the researchers conclude, that the pandemic has made the existing inequalities worse (particularly since these respondents were relatively affluent, compared to many families in the same position).

 “We knew that that there would be a huge difference with other families, and it’s not certain that this is all the effect of the pandemic, but the extent of the difference was surprising,” Willner says. “I was also surprised by how much less social support there was.” Stenfort Kroese elaborates on this past point: “You would expect some kind of community around neighbours, or church, or just having people looking out for you, but there was very little of that, especially for the carers of adults.”

Support package cuts have affected carers’ mental health

None of this, sadly, is surprising. Other research from Mencap echoes these findings, with a survey published last November revealing that the cuts in support packages for people with learning disabilities had affected carers’ mental health, with a number of carers having to resign from work, or move to live with the person they cared for.

“The impact is hard to overstate. We’ve got a situation in which families are locked down together, providing more care and around the clock,” Mencap social care policy lead James Robinson points out. “People are also having to provide specialist care and higher levels of care. These are people without training, without access to respite or day services and likely to be providing home schooling for other children as well.

"There’s a real picture of families having to take on all the responsibilities that the state should be providing. We found that over half of family carers are struggling, and around three-quarters reported that their mental health was suffering.”

Tackling the problem of carer stress

It’s also clear, as Willner says, that although the pandemic has worsened the problem, the underlying factors were already there. “Pre-covid I was really shocked in some of my clinical work,” says Stenfort Kroese. “I was working with the family of a young man with very severe and challenging disabilities and his mother died of cirrhosis of the liver. I’d had no idea that she was drinking; she was working very well with us. Since then I think I have become much more aware of asking directly.” 

The Willner-led report makes a series of comprehensive recommendations for tackling the issue. Some of these are specific to lockdown conditions (which may well continue or be repeated in some form in the future, especially for vulnerable people) such as publicising exemptions from lockdown restriction, and encouraging neighbour support, in the same way that people are encouraged to look out for older neighbours.

Others are less so: including key workers for adults and for people with less complex needs, and increased use of technology for communicating. The authors also stress the need to reverse the declining in learning disability nurse training – and to build in an awareness of these mental health needs, on the part of both learning disability nurses and social workers.

Commissioning systems obviously make this difficult. “When I was working clinically I would often meet carers for whom I would have liked to be able to offer some psychological support, but that wasn’t what we were there to do,” Willner says. At the same time, Robinson points out, “Families are entitled through the Care Act, and it’s really important that they try that. Local authorities are still under a duty to provide a much more comprehensive package of support. Even when lockdown ends in full, this isn’t going to be a situation in which suddenly everyone’s fine.

“I think that there needs to be an awareness that there are systemic issues, and practitioners need to recognise that carers need both more formal and more formal support –even if they’re only able to make small improvements themselves,” Willner concludes. “Everyone’s aware how services are being hollowed out, and this really makes carers’ jobs more and more difficult too.

"There is a very high degree of poor mental health among carers which it’s easy to overlook, because attention is on the person who has commissioned that support. If the big differences that we have identified in this study are results of the pandemic, then it’s a problem that’s going to recur whenever pandemic problems recur. If they’re not, they are constant problems that are bigger than we’d realised.”