Champion of the interests of those with profound disability

Loretto Lambe: February 1st, 1943 - October 17th, 2015

Loretto Lambe, disability campaigner. Photograph: Peter Boardman FPIBB
Loretto Lambe, disability campaigner. Photograph: Peter Boardman FPIBB

Loretto Lambe, who has died aged 72, was founder and chief executive of the profound disability charity Promoting a More Inclusive Society (Pamis). As such she devoted most of her life to working for some of society's most vulnerable people and their families.

Jenny Miller, current chief executive of Pamis, said she had “left a legacy that people with profound and multiple learning difficulties and their family carers are valued and included in society”.

Lambe grew up on Mail Coach Road, Sligo, one of six children of Bertie Lambe, a train driver, and Florence Crawford, a restaurateur. She attended the local Convent of Mercy school and then trained as a pharmacist, working in Sligo, Dublin and London.

In 1975, she joined the principal English charity for people with learning disabilities, Mencap.

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In 1985, she established with the then chief executive, Sir Brian Rix, the Mencap Profound Disability project in response to a plea from families with children with profound and multiple learning difficulties. An abiding commitment to such families occupied the rest of her life.

The project began in Manchester, where she worked closely with the Hester Adrian Research Centre, then Europe’s leading learning disability research institute. Here she developed an innovative approach to supporting families through workshops and providing practical and emotional support. The work particularly emphasised the right to access services on the basis of equality with other citizens.

After six years directing the project, she and her husband, Prof James Hogg, whom she married in 1990, established Pamis. When the couple moved to Scotland, the charity was given a base at the University of Dundee, and Lambe worked for two years as its sole, unpaid employee.

Community participation

During the rest of her life, she built the charity into a powerful support for families, with a staff of over 20. Pamis developed the Manchester support model, emphasising the importance of community participation and having as its starting point the expressed needs of parents.

She served as both secretary and treasurer of the Intellectual Disability Forum of the Royal Society of Medicine and co-founded and co-chaired the special interest research group on profound intellectual and multiple disability of the International Association for the Scientific Study of Intellectual Disability.

In both these contexts, she worked with colleagues across Europe, including many in Ireland.

Her knowledge of charities law and organisation meant she was much in demand as a consultant, and she was a governor of the Institute for Counselling and Personal Development in Northern Ireland, supporting both victims of the Troubles and people with learning disabilities.

On her retirement, the Scottish parliament passed a motion of acknowledgment of and gratitude for her tireless work, but she turned down the offer of a national honour.

She was a passionate gardener, loved to collect Belleek pottery and read extensively, especially books relating to Irish poetry, feminism and the islands.

She is survived by James, by her sisters Maura, Florence, Paul and Emily, and the wider family.