Mission Statement

Steering Group on Learning Disability and Bereavement
(Developing Practice and Changing Policy through
Collaboration, Research and Dissemination).

Recognising that people with learning disabilities grieve, this steering group seeks to ensure that they receive support which meets their individual needs.

AIM:

Link and liaise with other groups (for example the National Network for Palliative Care and People with Learning Disability; National Standards for Bereavement Care and Hospice Information Service).

Make information accessible to families, people with learning disabilities and professional carers.

Target influential support people (such as families, GP's; care staff; religious organisations and funeral directors)

Influence policy and practice by informing and working with government agencies, educational bodies and the media.
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Steering Group Members:

Sue Read - Chairperson
Sue Read (Chair) is a lecturer at the Department of Nursing and Midwifery, Keele University, Staffordshire, who has worked with people with learning disabilities since 1976. She has been a bereavement counsellor for eleven years, and is particularly interested in death, dying, loss and change in relation to disability.
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Noelle Blackman
Noelle Blackman is a drama therapist. In 1997 she set up the roc loss and bereavement service for people with learning disabilities. She is a co-ordinator of the GOLD (growing older with a learning disability) group, that originated at the foundation for people with learning disabilities and vice chairperson of the national network for the palliative care for people with learning disabilities.
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Pat Charlesworth
Patricia Charlesworth is a person with a learning disability. She is active as a volunteer with 1:1 and is a member of GOLD. She is currently co-writing and will be co-running a bereavement course for ROC.
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Jan Martin
Jan Martin is a volunteer at Sir Michael Sobell House Hospice in Oxford. She has a special interest in supporting adults with learning disabilities.
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Linda McEnhill
Linda McEnhill is Head of Family Support at St.Nicholas Hospice, Bury St.Edmunds and is also Chair of The National Network of Palliative Care of People with Learning Disabilities. As a social worker Linda has been working in Palliative and Bereavement Care for eleven years and has sought to develop her practice specifically with relation to people with learning disabilities.
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Brian McGinnis
Brian McGinnis is Special Advisor for Mencap, and Chairman of L'Arche UK of the Learning Disability Coalition, and of the Bromley Learning Disability Forum. He is personal advocate for a number of people with learning disabilities.
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