Projects

Project to support bereaved people with learning disabilities

PAMIS is a registered charity working with people with profound and multiple learning disabilities (PMLD) and complex health care needs, their parents and carers and interested professionals. A pilot study was recently carried out by PAMIS and had identified the particular and unique needs of both people with PMLD and their carers in relation to levels of support for them when bereaved. As a result of these findings, funding to carry out work in relation to the topic of bereavement and loss was secured. The project will run over two years.

Need for the Project

• People with PMLD and their carers do not receive adequate support that

meets their specific need when they are bereaved.

• Accessible resources for people with PMLD are not available.

• Families/carers are not adequately supported when a person with PMLD, for

whom they care, dies.

Supporting People with PMLD

PAMIS will run workshops in Tayside and in Grampian, which will allow carers to share their experiences of bereavement in relation to the person with PMLD, for whom they care.

Supporting Parents and Carers

PAMIS will run workshops in Tayside and in Grampian, which will allow carers to share their experiences of bereavement. This will help us to better understand the unique needs of family carers whose lives have been committed to caring and understand and respond to the support needs of professional carers who have developed close relationships with someone who has PMLD and has died.

If you would like to share your experiences and views with us regarding bereavement and loss and how it affects people with PMLD and/or their parents, carers and professionals then please do get in touch with us. You can contact Hannah Young on 01382 384 942 or at: h.young@dundee.ac.uk

NHS Borders working towards more openness about death, dying and bereavement

In May 2011, Alan Kellehear was the inspirational keynote speaker at the Third Borders Palliative Care Conference entitled Let’s all talk about Life and Death. Various workshops took place including one by Professor Kellehear about creating a compassionate community. Bullet points were taken from all the workshops and the final session discussed the conference outcomes as a starting point for taking health promoting palliative care work forward in the Borders. The feedback from the conference was very positive with many wanting to know further advances made in the area. (For more information about health promoting palliative care see: the theory section of this website.)

As a result, a Health Promoting Palliative Care Committee has been set up to assess what is needed in the Borders and the types of resources required to support the health promoting palliative care concept. The committee will then identify further strands of work. NHS Borders is keen to develop a local approach suitable for their community, whilst gaining knowledge from national initiatives, such as Good Life, Good Death, Good Grief. Specific areas of interest are schools, youth groups and workplaces.

They are exploring the possibility of raising awareness through various initiatives, for example a short story competition, the use of digital stories and the involvement of local media. There is currently an increased level of awareness of palliative care in the Borders as a result of the Margaret Kerr Unit Appeal, raising the final million for a new specialist palliative care unit.

NHS Borders is aware that death, dying and bereavement are issues which affect us all and that it is important to find appropriate ways of helping people to address these issues within their local communities. NHS Borders hopes that the measures it is taking will be a starting point to achieving this.

Western Isles Alliance

The Western Isles Palliative Care Committee is looking to form an alliance of locally interested stakeholders from diverse areas such as health and social care, education, voluntary groups, community groups, legal professions and local religious groups. The alliance will consider ways of implementing a health promoting palliative care approach in the Western Isles.

Its first step will be to establish whether other related work is already taking place, and look at how the local community might be involved, to ensure that any work that is undertaken is locally useful and sustainable.

The following have been identified as potential projects within the Western Isles to promote more openness about death, dying and bereavement:

• Christmas trees of Remembrance in prominent public areas so that bereaved people can remember loved ones by writing a personal message on a card and placing on the tree- artwork for cards provided by local schools and funding for trees from local sponsors.
• Making available to the public supportive information on death, dying and bereavement.
• School concerts to be held in local care homes with children, care staff and residents all participating perhaps with reading of original poetry or anecdotes of life stories by residents. This could be later used a starting point for discussions within the classroom about life stories and death and dying.
• Copies of Pilotlight’s book Dying to know on death and dying available in GP surgeries, hospital outpatient departments, libraries and other prominent public spaces.
• Hosting of cafe conversations on death, dying and bereavement with a variety of different groups including the general public, emergency services staff, social services staff, medical and nursing staff, undergraduate nursing students, educational staff, and young mums groups.
• Consult with local solicitors about devising an information pack on ‘How to make a will’ etc
• Develop ‘How to care, what to say’ programmes. These programmes are designed to give advice to family, friends and carers on how to help those with a life-limiting illness and their family or how to help someone who has been bereaved. These could be delivered in the local community, perhaps initially targeting home care staff, voluntary services and large employers such as the local council.
• Host an area-wide palliative care awareness day with a variety of activities aimed at community engagement including prominent display of posters in public places, and local newspaper and media coverage.

The alliance will seek to use tools used successfully in Victoria, Australia, such as the Big Seven Checklist and a Health Promotion Palliative Care Activity Record sheet to evaluate interventions in terms of predicted outcomes, processes and impact evaluations achieved and include mapping of capacity building strategies.

Dr Clare Carolan would like to express her thanks to the Alastair Short Memorial Fellowship for funding a project entitled ‘Health-promoting palliative care: lessons from the other side’ enabling her to travel to Victoria, Australia to learn how a health promoting palliative care approach has been implemented there and bring this learning back to the Western Isles.