Northern Trust booklets aim to support people with learning disabilities through bereavement
People growing older with learning disabilities often do not have the same access to palliative care and bereavement services as the general public. Staff in the Trust wanted to work together to change this. A working group was formed between professionals from the Trust and NI Hospice, who work in palliative care, bereavement, learning disability or have a personal caring experience.
Research shows that adults with a learning disability will experience several significant bereavements of family or friends and want to be involved in conversations about death and dying. The group also found that many staff, carers and family find these sensitive conversations difficult.
To help have these conversations, a new booklet “When someone dies” has been created by the group. It can be used to support people with learning disabilities when someone they know dies. A guidance booklet has also been created to help family, carers and health professionals have confidence using the resource. It was encouraging to have the booklets approved by the Northern Trust Adult Learning Disability Service User Forum.
The booklet is in an easy read format with carefully selected pictures. Areas covered include what dying means, what happens when someone dies and practical information e.g. what happens at a funeral. It also helps explain about emotions, what grief is and what things may help someone feel better. There is space to add a photo or drawing so the person can personalise it.
The guidance booklet gives some practical advice for the professional, carer or family member who is having this conversation and a checklist of information and items to have. It also gives page by page prompts for using the booklet. There are also suggestions of other resources if needed.
The launch took place on 30th May, at the Old Courthouse Theatre in Antrim. Following this event, the free booklet and accompanying guidance will be available from Northern Trust community learning disability teams (Carrickfergus, Ballymena, Magherafelt and Coleraine) or can be viewed on the Bereaved NI website. Copies will also be available to view in Death Positive Libraries in the Northern Trust area in Crookston, Magherafelt and Draperstown.
We come together to discuss a subject that touches us all at various stages in our lives, the loss of someone close to us. This can be a difficult subject to address. It may evoke discomfort, strong emotions, and even fear. However, it is an important conversation. Grief is a universal experience, and supporting one another is essential.
This year’s theme for Learning Disability Week is “Do you see me?” The phrase “Do you see me?” highlights the importance of recognizing, acknowledging, and appreciating individuals with a learning disability. Being valued means that people with a learning disability are respected by others, and their views and feelings are listened to.
It is important that we as a Trust provide the right care in the right place at the right time with the right people and we hope this booklet and guidance document helps support everyone at a very difficult time. This tool is designed for everyone to refer back to over the years, including on anniversaries, as emotions and feelings will endure over time.
Photographs from Launch of the Booklets 30th May 2025
