Situation:
Development of a resource to equip service users, parents, carers and staff with the confidence, knowledge and information to support someone with a learning disability through bereavement. The resource includes:
1. An evidence-based workbook for people with learning disabilities covering death, bereavement and grief – ‘When Someone Dies’ A booklet to help support you when someone you know dies.
2. ‘When someone dies’ – guidance document. This provides useful advice on how to use the ‘NHSCT, When Someone Dies’ booklet.
Both booklets are used alongside each other
Evidence consistently highlights that individuals with learning disabilities are at increased risk of exclusion from conversations about death. This is often due to communication barriers, assumptions about capacity, and lack of accessible resources. Such situations can lead to heightened distress, unresolved grief, and poorer emotional outcomes.
Tuffrey-Wijne I, Finlayson J, Bernal J, Taggart L, Lam CKK, Todd S. Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. J Appl Res Intellect Disabil. 2020;33:927–938.
The Northern Trust (NT) Palliative Care and Learning Disability Working Group developed this resource to assist in addressing the recognised gap in how people with learning disabilities are supported to understand and process death, bereavement and grief.
Service users co-produced the workbook – ‘When Someone Dies’ – A booklet to help support you when someone you know dies.
The overarching aim of this work was to promote equitable, person-centred bereavement support through the meaningful use of an accessible resource. Specifically, the activity aimed to support the implementation and use of the ‘When Someone Dies’ bereavement booklet within clinical and care settings, ensuring that individuals with learning disabilities are actively included in conversations about death in a way that is appropriate to their level of understanding.Analyst notes:Tags:Task:
A multidisciplinary sub-group was established from the members of the NT Palliative Care and Learning Disability working Group to guide the development and implementation of the ‘When Someone Dies’ booklet.
The sub-group consisted of a wide range professionals with different expertise. They included:
• Adult Learning Disability Speech and Language Therapy
• Learning Disability Practice Educators/Acute Advisory nurses
• Learning Disability Nurse consultant.
• Palliative Care Service Improvement Team
• Macmillan Clinical Nurse Specialist (Palliative Care)
• Health Facilitation nurses
• Bereavement Co-ordinator
The lived experience of service users was central to this project. The sub-group engaged with the Adult Learning Disability (ALD) Service User Forum to hear their views on the booklet and how it could be developed or improved.
A key early responsibility of the group was to agree roles and responsibilities within the development process. It was collectively agreed that the booklet content would be led and developed by the learning disability team, recognising their specialist expertise in accessible communication and the needs of people with learning disabilities.
The wider group also held responsibility for considering how the booklet would be implemented in practice, identifying the need for additional guidance and staff support to promote safe, consistent and person-centred use. Thus, included recognising potential barriers, such as communication needs and staff confidence, and working collaboratively to address these through guidance, education and shared learning.
Action:
To achieve the aims of improving bereavement support for people with learning disabilities, the task group worked collaboratively to develop and refine the booklet, the learning disability team led on drafting the content, drawing on their expertise in accessible communication.
Ongoing input from palliative care, speech and language therapy and Bereavement Co Ordinator ensured the information was clinically appropriate, sensitive, and aligned with the best practice.
The ALD service user forum played a key role in shaping the booklet through feedback on language, imagery, and overall accessibility, ensuring the resource reflected the needs and preferences of people with a lived experience. This process supported a co-produced approach, strengthening the relevance and usability of the final resource.
It was recognising that a booklet resource alone would not be sufficient to change practice. Hence actions were also taken to support implementation. This included the development of a guidance document to accompany the booklet, providing staff and carers with practical advice on how to use it in a person centred and sensitive way. Teaching sessions we delivered to staff to raise awareness of the new resource and how to use it. In addition, the LD team was available to provide advice to staff applying the resource in practice.
To support wider engagement and uptake, a formal launch event was held with professionals, care providers and service user’s from across the Trusts in attendance, with the Mayor of Antrim leading the launch. The initiative was further promoted through Trust corporate communications, increasing visibility and awareness. In addition, the work was disseminated through presentations at Queens University and Macmillan Cancer Support Conference, and local ‘Death Libraries’, supporting broader knowledge and encouraging adoption beyond the immediate service area.
Result:
The development and implementation of the ‘When Someone Dies’ booklet has led to meaningful improvements in how people with learning disabilities are supported to understand and process death and bereavement. One of the most significant changes has been increased awareness and confidence among staff and carers in initiating conversations about death, supported by access to a structured, accessible resource and accompanying guidance.
Qualitative feedback from staff and care providers has been positive, with reports of improved communication, greater use of open and honest language, and increased confidence in supporting individuals through bereavement. The involvement of ALD Service User Forum has also strengthened the relevance and accessibility of the resource, ensuring it reflects the needs and preferences of people with lived experience.
The reach of the booklet has extended beyond the immediate service area through a formal launch event, Trust wide communications, and dissemination at regional and professional forums, including Queens University and Macmillan Cancer Support conference. This has supported wider awareness and interest in adopting similar approaches across services.
While formal evaluation and quantitative data are still in development, early indications suggest that the resource is contributing to more inclusive, person-centred bereavement support. A key learning from this work is that developing a resource alone is not sufficient to change practice: structured guidance, education, and ongoing support are essential to embed meaningful use.
If undertaking this work again, earlier consideration would be given to establishing measures from the outset, such as feedback tools or outcome indicators, to better capture impact over time. There would also be scope to further strengthen direct involvement of people with a learning disability throughout implementation, ensuring their voices continue to shape how the resource is used in practice.
