Northern Trust launches new resource to support people with learning disabilities through bereavement

The Northern Health and Social Care Trust has launched a new booklet aimed at helping adults with learning difficulties navigate the challenges and sensitivities around death.

‘When someone dies’ has been produced as part of a collaboration between Trust professionals who work in palliative care, bereavement, learning disability or have a personal caring experience, and NI Hospice.

It features an easy read format with carefully selected pictures covering areas including what dying means, what happens when someone dies and practical information like what happens at a funeral.  It also helps explain about emotions, what grief is and what things may help someone feel better, with space to add a photo or drawing so it can personalised.

A guidance document has also been created to help family, carers and health professionals, to ensure they have confidence to use the resource in the best way. It provides practical advice to help with conversations and a checklist of useful information and items along with page by page prompts for using the booklet.

Explaining how it came about, Alison Craig, Macmillan Palliative Care Service Improvement Facilitator, said: “People growing older with learning disabilities often do not have the same access to palliative care and bereavement services as the general public, and we wanted to work together to change this.

“Research shows that adults with a learning disability will experience several significant bereavements of family or friends and they want to be involved in conversations about death and dying. Our working group also found that many staff, carers and family find these sensitive conversations difficult, and we hope having this new resource will make a difference during what can be a very sad and upsetting time.

“We have taken great care to create something meaningful and we’re very grateful for the support we’ve received from the Northern Trust’s Adult Learning Disability Service User Forum.”

Trainee Consultant Nurse for Learning Disability, Seamus Coyle added: “During Learning Disability Week 2025 which runs from June 16 – 22 we are pleased to be shining a light on this new support resource for our adult learning disability community.

“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 the awareness week is “Do you see me?” and this phrase 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 provide the right care, in the right place, at the right time, with the right people, and we hope this new 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.”

The free booklet and accompanying guidance is available from the Northern Trust’s community learning disability teams in Carrickfergus, Ballymena, Magherafelt and Coleraine or you can access an online version by going to Bereavement Services or HSCNI

Copies will also be available in Death Positive Libraries in Cookstown, Magherafelt and Draperstown.