Projects

Public awareness events held in Clydebank

If as individuals, and a society, we are not open about death, dying and loss then it can make things more complicated when someone dies. NHS Greater Glasgow & Clyde are working in partnership with St Margaret’s of Scotland Hospice to hold 3 public education events to raise awareness of the importance of being more open about death and dying. At this event you can:

• Be introduced to people who have a professional and personal interest in this topic.
• Hear from guest speakers involved in end of life care and planning.
• Explore a choice of resources and services that may help you to plan for the future, either for yourself or for those who you care for.
• Use the opportunity to talk to people who believe that dying matters.

The first event is taking place on Thursday 20^th June, 12-2pm at St Margaret of Scotland Hospice, East Barns Street, Clydebank, G81 1EG.

The event is FREE and everyone is welcome, although spaces are limited so contact Margaret Donnelly or 0141 435 7017 to reserve your space.

Further events will be held on 22nd August and 21st November 2013

Times: 12pm—2pm

The event flyer can be downloaded here.

Legacy Organiser iPhone App helps patients to enhance their lives

Legacy Organiser, the world’s first iPhone app that enables users to record information about how they would like their lives to be remembered and celebrated, is collaborating with the Hospice of St Francis in Berkhamsted, Hertfordshire, in a ground breaking project.

Staff at the hospice believe that Legacy Organiser may benefit their patients and enhance their lives.

The Hospice of St Francis is now using the app as a tool to help participants in clinical consultation sessions, as a facilitator to promote dialogue.

It is hoped that the partnership will demonstrate how this app can improve patients’ lives as they come to terms with their illness.

A patient shares her thoughts at the app, "It made me think about topics like my funeral, but what has been really helpful is that it's sparked off conversations with my husband that we probably wouldn't have had - this has to be a good thing. It might sound sad but funnily enough, it's been really enjoyable... like looking at all our photos and selecting out a few favourites into the app... it's actually given us some real laughs.”

Dr Ros Taylor, Director of the Hospice of St Francis said: “I am enjoying using the Legacy Organiser App with Hospice patients facing an uncertain future - they find it really easy to use and in our meetings we use it to reflect on key moments in their lives which then lead onto special conversations about hopes and dreams for the future.”

The app enables users to store their life history as well as their intentions and wishes for all aspects of their funeral, farewell and will.

Users can also record life defining experiences, photos and songs to create their own “legacy”. All this information can be used for personal reference or passed on to family or loved ones.

Kimberley McLaughin, Director of Supportive Care Services at St Francis said, "The very fact that the app has not been specifically designed for those diagnosed with a serious illness makes it all the more useable - Memoirs like 'After I have gone' and 'Food for my funeral' provide useful opportunities to invite conversations that are often unvoiced."

Staff at the Hospice of St Francis believe there is great synergy with the app and Dignity Therapy, for patients to reflect on the past and look ahead at what is to come.

Morag Cormack, Co-founder of Legacy Organiser explains: “The process of working through the app appears to offer patients the time to take stock and reflect on their lives. We are delighted and overwhelmed that the app is being used in this way and look forward to developing this study project with the Hospice of St Francis.”

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.