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What factors influence the sterilisation of people with learning disabilities?

Dr Alison Stansfield
Barnsley PCT

Sterilisation is a significant and potentially irreversible procedure and can only be undertaken lawfully if the individual receiving treatment has the capacity to consent. For those people in England and Wales who are unable to consent for themselves, the Official Solicitor co-ordinates an adversarial investigation to determine their best interests and a formal application is made that is considered by a judge sitting in the family division of the High Court.

This presentation examining that system is based upon a retrospective case note study of all referrals to the Official Solicitor's Office for sterilisation during the eleven years between 1988 and 1999. Using an established protocol, information was obtained from legal and clinical notes relating to the initial referral to the Official Solicitor, the opinions of experts, the court proceedings and the outcome.

The research consists of a series of interrelated studies initially examining which cases are referred for consideration; who participates in the decision; what facts and opinions are considered and how the decision is made and ultimately examines what factors influence the final decision. The work also examines the twelve cases reported in case law and compares the information made available to the public domain to that collated as part of the legal process.

Seventy three people, three of whom were men, were referred over the 11 years. There was little to distinguish them from their peers except, perhaps, a greater severity of learning disability. The majority lived at home and did not have partners. In 31 cases the court ruled that sterilisation would be in the person's best interests and an additional six women probably had operations resulting in sterilisation without court authorisation. For the majority there was little evidence to suggest that a mutually enjoyable sexual relationship was likely and of concern was the level of reported sexual abuse (at least 12% and possibly 25%).

The lack of any distinguishing features to differentiate those people being referred from their peers may indicate that the application for non-consenting sterilisation is the output of a primarily social process driven by longstanding social concerns. The decisions appear to have been influenced by the judges' desire to help the person being referred and his/her family, follow existing case law, establish new case law and follow the changing opinions about the wider issues of the rights and best interests of the learning disabled population.

The retrospective case note format must limit wider interpretation of the results but the research represents a historical document outlining these important medical decisions.

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About the Group

If you woud like to get in touch with the Social History of Learning Disability (SHLD) Research Group, please contact:

Liz Tilley 
Chair of the Social History of Learning Disability (SHLD) Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
Walton Hall
Milton Keynes
MK7 6AA

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