PAMIS to showcase bereavement resource at Holyrood

Published On Tue 27 May 2014 by Grant Hill

University of Dundee-based charity PAMIS will tomorrow visit the Scottish Parliament to showcase a new resource for bereaved people with profound and multiple learning disabilities and those who care for them.

People with such complex disabilities and their families face many barriers to accessing and participating in the community, and PAMIS works on a number of fronts to enable inclusion and improve their quality of life.

Staff have been working with parents and carers for the past three years to develop the ‘Bereavement and Loss Learning Resource Pack’. The resource will be showcased at a Holyrood reception hosted and sponsored by Jackie Baillie MSP, Shadow Cabinet Secretary for Health and Wellbeing, at 7.30pm on Wednesday, 28th May.

Social Care Consultant Dr Donald MacAskill, who contributed to the research, said, “There is a lot of silence around death and bereavement. People are uncomfortable and avoid the issues. The silence is deafening for people with profound and multiple disabilities and for a long time their experience of loss has gone unheard and unmet.

“This brilliant resource speaks for them, their families and carers. In creative and respectful ways it tells their story and will undeniably serve to support hundreds who have grieved and are grieving. It should become a must read for workers, advocates and families alike.”

The resource explores how to understand the bereavement and loss experiences of people with profound and multiple learning disabilities, their reactions to bereavement and how to provide support by considering the circumstances that may further exacerbate grief. 

It goes on to show how, in order to understand the specific issues related to bereaved families, it is necessary to gain a better understanding of their life experience. PAMIS’s experiences demonstrate the extent to which the palliative care needs of people with such complex disabilities are met will shape the experience of bereavement for families. In essence, “bad deaths” have been those which have prevented families from meeting the palliative care needs of their son or daughter. 

This work has been funded by the Scottish Government, Esmée Fairbairn Foundation, True Colours Trust, Rix, Thompson, Rothenberg Foundation and Alexander Moncur Trust

PAMIS is a registered charity that supports people with profound and multiple learning disabilities and their families across Scotland. It provides a range of services and campaign for equity in services for people with profound and complex disabilities. 

To find out more about PAMIS services visit www.pamis.org.uk or contact Hannah Young on 01382 385154.

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Grant Hill
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University of Dundee
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