Obituary: Loretto Lambe, pharmacist, charity founder and learning disability consultant

Loretto Lambe: Learning disability consultant and campaigner whose work made an enormous difference to the lives of many

When Loretto Lambe met her future husband on a Moscow to Lengingrad train it sparked not only an enduring romance but ultimately led to a powerful partnership that enhanced the lives of countless people in one of our most vulnerable strands of society.

She was working for the chief executive of Mencap at the time, and he was a psychologist and researcher from the University of Manchester on a study tour of the Soviet Union. They subsequently collaborated closely on a profound disability project and, when its days were numbered, they went on to found a charity dedicated to offering direct practical and emotional support for the families of those with profound and multiple learning disabilities.

She worked unpaid for the first two years to establish the organisation, now based at the University of Dundee, and today PAMIS – Promoting A More Inclusive Society – works with many Scottish local authorities, provides extensive training for families and has become an influential advocate and campaigner, working closely with the Scottish Government to develop policy and practice.

“Loretto has left a legacy that people with profound and multiple learning disabilities and their family carers are valued and included in society,” said Jenny Miller, chief executive of PAMIS. “Her passion and commitment can be seen within the organisation and we will continue the work and always acknowledge the founding principles she put in place.”

Born in Sligo, one of six children of train driver Bertie Lambe and his wife Florence, a restaurateur, Loretto was educated at the local Convent of Mercy School before training as a pharmacist.

From 1961 she worked in and managed pharmacies in Sligo, Dublin and London until joining Mencap in 1975 where she spent ten years as personal assistant to its chief executives.

It was there, through direct contact with people with learning disabilities, that her interest in the field emerged and in 1977 she met the man she would marry, Professor James Hogg, an expert in profound intellectual disabilities, from Manchester’s Hester Adrian Research Centre, during that Russian train journey.

A few years later the then chief executive of Mencap, Sir Brian Rix, now Lord Rix, was challenged by a mother during a television debate about what exactly his organisation was doing to help people, like her son, with profound and complex disabilities. He promised to look into the matter and in doing so brought together an expert committee which included Loretto Lambe and James Hogg. Along with Sir Brian she identified shortcomings in provision and, working with the Hester Adrian Research Centre, they developed the idea of a department within Mencap specialising in this area. The result was the Profound Disability Project, of which Lambe became director for the next six years.

The project undertook research into the needs of families caring for a daughter or son with profound disabilities and developed an innovative model of family support.

But, following indications that the life of the Profound Disability Project was limited, Professor Hogg and Lambe, who married in 1990 – 14 years after their first meeting – established the new organisation, PAMIS.

Initially registered with the English and Welsh Charity Commission, when Professor Hogg moved to the University of Dundee in the early 1990s, the couple was invited to locate PAMIS in the university, in conjunction with Hogg’s new research unit.

The charity later became registered in Scotland and a formal unit within the School of Education, Social Work and Continuing Education.

At the heart of PAMIS’ work is the Family Support Service which gives direct practical and emotional support to families caring for someone with profound and multiple learning disabilities.

Lambe complemented this with extensive training for parents on a wide range of health and social topics ranging from the management of epilepsy, sleep problems and physical disabilities to understanding relevant legislation and developing accessible community leisure activities. All her work took as its starting point the expressed needs of parents: for example, when they told of their frustration at not having fully accessible toilet facilities in the community she initiated the Changing Places Toilets Campaign.

Working in collaboration with a UK-wide consortium this led to more than 100 such facilities being set up in Scotland and 600 across the UK. The success of this work was acknowledged in a Scottish Government Motion.

The research she established led to national and international interest and she was invited to join the Intellectual Disability Forum of the Royal Society of Medicine, which she served as secretary and treasurer. She was also co-founder and co-chair of the International Association for the Scientific Study of Intellectual Disability Special Interest Research Group on Profound Intellectual and Multiple Disability. Her publications and the impact of her research have been acknowledged in the context of the university Research Excellence Framework.

Her detailed knowledge of charity law and regulation also made her much in demand with several charities: she was governor and founder member of the Rix-Rothenberg-Thompson Foundation, a London-based grant-awarding body and a governor of the Institute for Counselling and Personal Development in Northern Ireland, which supported both victims of The Troubles and people with learning disabilities.

On her retirement a year ago her work with PAMIS was applauded in a motion in the Scottish Parliament and she established the Loretto Lambe Learning Disability Consultancy.

Latterly, though weakened and succumbing to metastatic melanoma, her passion for her cause remained as strong as ever and even in her final days she continued to push herself to the limit to submit a further grant application on multi-sensory storytelling that would contribute to people with profound disability experience elements of Scottish culture.

An inspirational figure who had refused a national honour, she will be celebrated through University of Dundee plans to create a Loretto Lambe Challenge in her memory to encourage interdisciplinary collaborations to improve the quality of life of people with profound disabilities and their families.

Loretto Lambe is survived by her husband James, her four sisters, Maura, Paul, Florrie and Emily, step-daughters, Abigail and Natalie and extended family.