Bereavement resource launched for people with profound learning disabilities and their carers

Categories: Care.

Developed by PAMIS  – a Scottish organisation linked to Dundee University which works solely with people with PMLD and their professional and family carers – the resource is the result of a two-year research project.

It is generally accepted that death and disability are two of the most difficult subjects for society to deal with but when this double taboo is combined with the complexity of profound physical and learning disability most mainstream organisations, including hospices, feel they have very little to offer and indeed some might even question whether profoundly disabled people have the capacity to grieve.

Likewise bereaved parents of people with PMLD are often expected to feel primarily relief when their offspring comes to the end of their life (the ‘tragic life, blessed relief’ concept).

The consultations underpinning this resource challenge that reasoning as demonstrated when parents came together to talk about the precious lives of their sons and daughters and the deep grief that they and their surviving children face after their deaths.

Sadly within the focus groups there were too many reports of professionals, ‘who should know better’, impacting negatively on the grief of family members by expressing views that display an incomplete understanding of the richness of the lives of people with PMLD and of the significance of all the relationships they are part of.

One of the unique contributions of this resource is that it also seeks to support the formal carers (e.g. in schools or respite centres) who in consultation also talked of their bereavement of a young person with PMLD with whom they may have worked for many years.

What does the pack include?

A workbook captures the rich material gained in consultation and sets it within the context of theoretical understandings of loss and bereavement; as such it explores the bereavement and loss experiences of people with PMLD, their reactions to bereavement and outlines how to provide support by considering the circumstances that may further exacerbate grief. 

It also demonstrates ways of engaging people with profound learning disabilities in the sensitive issues around bereavement and loss. 

The resource shares with us experiences of bereaved parents and carers who have cared for someone with profound learning disabilities and complex healthcare needs.  It demonstrates how in order to understand the specific issues related to bereaved families, it is necessary to gain a better understanding of their life experience.

Families’ experiences demonstrate that 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.

The pack also includes a DVD of two 20-minute films of conversations with parents and carers and of some of the direct work with individuals with PMLD. These brief films help us to understand the experience of bereavement for people with profound learning disabilities and those caring for them and as such are a particularly useful training tool.

The authors of this material demonstrate that the journey of grief can be supported sensitively by listening to, nurturing and cultivating stories of relationships.  It also becomes clear that through this approach, relationships can be formed, maintained and developed. The range of additional reading and resources cited strongly supports the material in both understanding the experience of bereavement and suggestions for how we can sensitively support bereaved people.  Beautiful illustrations and photographs complement the shared experiences of those involved in PAMIS’ Bereavement and Loss Project.

At the post-launch reception held at the Scottish Parliament to celebrate this piece of work, a parent, Pat Graham, who was involved in the development of the resource said:

“I believe PAMIS has given us a great gift.  It’s one of the best things we have ever done.  We were never going to find a way to explain to Lauren [my daughter] that her Gran had died but we have at last found a way to keep a little bit of Gran alive in Lauren’s memory.  And as for me, by thinking about my mum and talking about her most days to Lauren, I at last got to do my own grieving.”

For children’s hospices and for those adult hospices that are developing transition services for young people (about 50% of who will have physical and learning disabilities) this is an essential resource.  As a result of the funding for this project by the Esmée Fairbairn Foundation, Scottish Government, True Colours Trust, Rix, Thompson, Rothenberg Foundation and Alexander Moncur Trust, the cost of purchasing this resource has been deliberately kept low at £24.95. 

To order a copy of the Bereavement and Loss Learning Resource Pack, please visit or order a copy by telephone: 01382 385154.

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