Bereavement service for people with learning disabilities

A specialist bereavement service in Hertfordshire helps people with learning disabilities deal with loss and trains social care staff on how best to support clients. Vern Pitt reports

There are many euphemisms for death: kicking the bucket, passing away or snuffing it. They help us talk about death. But for people with learning disabilities this abstraction of the subject can be confusing. Rather than softening the blow, it fails to connect with many, leaving them without any knowledge or understanding of death.

It is one of the reasons David O’Driscoll, a social worker turned counsellor, started the specialist loss and bereavement service in Hertfordshire 15 years ago. Later it was picked up by Hertfordshire Partnership NHS Trust, where it is now based.

“Relatives and professionals often want to protect people with learning disabilities from painful events such as death, but that means that when it happens they don’t have the tools to deal with it,” says O’Driscoll.

The loss of a loved one can hit people with learning disabilities in many ways. The death of a parent could leave them without a carer and some find they have to enter a residential home, losing independence and their community.

Andrew Oughton, a social worker in a learning disabilities team in Hertfordshire, who has referred several clients to O’Driscoll’s service, says: “One came from a long-stay hospital. He has done a lot of work on the loss he felt from living in that environment and missing his family, but he has also worked on the loss of order and community from moving out of the hospital more recently.”

The communication difficulties faced by people with learning disabilities mean that the experience of loss can manifest as challenging behaviour at times. “Mainstream society has an outlet because we tend to give people space to talk about loss,” O’Driscoll says. “That doesn’t often happen for people with learning disabilities so it comes out in other ways.” Mainstream services often find this challenging behaviour difficult to deal with, leading to discrimination against people with learning disabilities.

The barrier of language is the starting point for the one-day courses O’Driscoll runs for social care staff in Hertfordshire three times a year. Staff discuss the different levels of understanding that people can have about loss. He might refer staff back to their own childhood experiences to appreciate how adults with learning disabilities might have trouble understanding the impact of death. “Staff are often relieved to talk about it and can get into very personal stories,” he says.

Alongside this, O’Driscoll runs counselling for individuals, seeing between 15 and 20 clients a week. Peter Butcher, a former client of O’Driscoll, says the counselling has helped him deal with the separation from his mother, with whom he used to live but moved away from. For several years Butcher was depressed but is now an active member of the gardening club at the residential home where he lives and he says he feels happier and more confident.

The number of referrals has risen since O’Driscoll started the service, which he views positively. Oughton says the service has made him more aware of the issue of bereavement and learning disability and appreciates the ability to discuss referrals informally. “There are points at which you feel you are going too far with what you can offer as a social worker, with time pressures and budget pressures and expertise. Then this service is invaluable,” says Oughton.

O’Driscoll is clear, however, that the service is not for everyone. He recommends social workers should try to work through grief with clients as best they can in the first six months. Only after then, if there are still issues, should counselling be sought.

Social workers are well placed to help unpick bereavement issues because of their holistic approach. “Part of the social worker role is maintained often through the relationship with the client,” says O’Driscoll. “By using this relationships positively you advise and educate.”

However, he says he worries that grief is too often seen as an issue for health rather than social care professionals. He is convinced that the issues of loss and learning disabilities should be on all social work courses. At the moment he says courses cover the subject only patchily but he hopes that, with greater awareness, similar services to Hertfordshire’s could be set up across the country to improve the quality of life for people with learning disabilities.

 Mencap factsheet on bereavement for people with learning disabilities