Hidden Pain?

Press release issued: 16 November 2009

A new research study by the Norah Fry Research Centre and the Bristol Crisis Service for Women have found people with learning disabilities who self-injure are not always taken seriously and current practices in the learning disability field need to be changed.

People with learning disabilities who self-injure are not always taken seriously and current practices in the learning disability field need to be changed, says a new study.

The research study, Hidden Pain? Self-injury and people with learning disabilities was carried out by Bristol University's Norah Fry Research Centre and the Bristol Crisis Service for Women. It was funded by a Big Lottery Fund research award.

This is the first time a study has actually asked people with learning disabilities throughout the UK about their own understandings of their self-injury and what would help them. Twenty-five people with learning disabilities and personal experience of self-injury took part in up to four research interviews each. In addition, 15 family members and 33 professionals were interviewed for the research study. Most were 'linked' to the people with learning disabilities taking part in the study.

The study found the most frequently reported types of self-injury were scratching, cutting their skin, hitting themselves, self-biting, taking an overdose and hitting out at something else such as a hard wall or hard object. All but five of the participants engaged in more than one type of self-injury.

Dr Pauline Heslop, lead researcher for the project and Senior Research Fellow at the Norah Fry Research Centre, said: "This study has provided considerable insights into the circumstances, thoughts and feelings of 25 people. In many ways it challenges existing practice in the learning disability field. We suggest self-injury is something that can be understood, and that for these people its roots lie in their past or current circumstances and experiences, rather than their biological make-up.

"We hope that when the recommendations are implemented, we can start to address self-injury in people with learning disabilities with the care and concern that they deserve and not 'sweep it under the carpet' as if there were nothing that we can do about it."

The study proposes a number of recommendations based on its research findings:

Acknowledge self-injury as an issue in its own right and take it seriously.
Address self-injury in people with learning disabilities as it is addressed in anyone else.
Acknowledge the importance of choice and control in people's lives, and strive to create conditions in which people can be in control as much as possible.
Work with people with learning disabilities to help them understand, clarify and manage their emotions.
Start with strategies that people are already using to manage their self-injury and build on these.
Work individually and creatively with individuals in a person-centred way.
Consistency is key.
Put systems in place to help people with learning disabilities explore past experiences.
Consider support groups for people with learning disabilities who self-injure.
Practice listening skills and be mindful of always being non-judgemental, accepting and respectful.

Hilary Lindsay, Director of Bristol Crisis Service for Women, said: "We hope the report's recommendations will enable people with learning disabilities who self-injure to get the support that they need. We have also been able to produce a range of resources about self-injury in people with learning disabilities for family members, professionals and people with learning disabilities themselves."

The Norah Fry Research Centre and Bristol Crisis Service for Women will present their research study findings on Wednesday 25 November at Explore, At-Bristol, Anchor Road, Bristol. To download a booking form, go to http://www.bristol.ac.uk/norahfry/news/2009/launchflyer.pdf

The conference will be of interest to people with learning disabilities, and all those supporting them in the statutory, independent and voluntary sectors.

Further information

The three-year research study, 'Hidden Pain? Self-injury and people with learning disabilities?' was carried out by Bristol University's Norah Fry Research Centre and Bristol Crisis Service for Women. It was funded by a £250,000 research grant from the Big Lottery Fund.

Project resources are available from Bristol Crisis Service for Women for a small charge, tel 0117 927 9600 or email bcsw@btconnect.com. These include:

· A DVD of people with learning disabilities talking about their experiences of self-injury.

· A workbook for people with learning disabilities who self-injure, to help them think through and address their self-injury.

· An information booklet for family members/supporters or people with learning disabilities who self-injure.

· A training pack for those working with people with learning disabilities who self-injure.

The Norah Fry Research Centre at the University of Bristol was established in 1988, and 2009 marks a celebration of 21 years of continuous research activity. Its principal interests are in the area of social and policy-related research. The Centre aims to make a positive difference to the lives of disabled children, young people and adults -- with a particular emphasis on issues for people with learning disabilities and their families.

Bristol Crisis Service for Women (BCSW) is a voluntary organisation set up in 1986 to support women in emotional distress, and particularly those who self-harm. They are one of the UK's leading organisations in their field and work nationally to develop services, and raise awareness of self-harm and mental health issues, through training and providing information.

The Big Lottery Fund (BIG), the largest distributor of National Lottery good cause funding, is responsible for giving out half the money raised for good causes by the National Lottery.

BIG is committed to bringing real improvements to communities and the lives of people most in need and has been rolling out grants to health, education, environment and charitable causes across the UK since June 2004. The Fund was formally established by Parliament on 1 December 2006.

Since the National Lottery began in 1994, 28p from every pound spent by the public has gone to good causes. As a result, over £23 billion has now been raised and more than 317,000 grants awarded across arts, sport, heritage, charities, health, education and the environment.

Please contact Joanne Fryer for further information.