Awareness of and access to services, including bereavement support 

(Click to download grab guide)

There are any many different services that can be accessed that provides support for a person who has a life limiting illness and those who are bereaved. Services will vary across the country. 

There are lots of different organisations ranging from local hospice, community, and hospital palliative care teams to those focusing on specific conditions e.g., Macmillan Cancer Support. 

Bereavement

People with learning disabilities are often excluded from conversations around death and dying and as a result, their grief can go unrecognised. Yet, loss and grief are universal life experience, and it is important to communicate clearly with people with learning disabilities both before and after a death, offering anticipatory support or signposting for advice when required. 

Remember- There is no right or wrong way to grieve and people will experience a range of different emotions and behaviours. This is no different for someone with a learning disability                                                                                                                                                    

Resources and useful links

End of life care services 

Information on end-of-life care services and roles https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/

Information on health care professionals https://www.mencap.org.uk/learning-disability-explained/resources-healthcare-professionals

Skills for care understanding roles in end of life care https://www.skillsforcare.org.uk/Documents/Topics/End-of-life-care/Understanding-roles-working-together-to-improve-end-of-life-care.pdf

Marie Curie is a national charity that provides frontline nursing and hospice care they have. They provide a free support line and provide information and support on all aspects of dying death and bereavement  https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/proving-good-quality-care/a-guide-to-end-of-life-services#local-services

PCPLD  Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. https://www.pcpld.org/support

Bereavement 

The Good Grief Trust provides information on services for people who are bereaved: https://www.thegoodgrieftrust.org/

The National Bereavement alliance provides information on useful resources to support professionals whose clients are bereaved https://nationalbereavementalliance.org.uk/

Marie Curie is a national charity that provides frontline nursing and hospice care they have. They provide a free support line and provide information and support on all aspects of dying death and bereavement: https://www.mariecurie.org.uk/help/support/publications/easy-reads 

Cruse provides one to one support, and helpline to those who are bereaved: https://www.cruse.org.uk/

Mencap provides useful information on how to deal with bereavement: https://www.mencap.org.uk/advice-and-support/dealing-bereavement

The Child Bereavement network provides information on support and services aimed at children and young people who are bereaved https://www.childbereavementuk.org/

Films, books, and webinars 

Bounce Back Boy. The story of Josh a young boy with learning disabilities and his end of life care: https://www.rcn.org.uk/clinical-topics/end-of-life-care/bounce-back-boy  

Macmillan Cancer Support have a range of booklets that explains end of life care, death dying and bereavement https://be.macmillan.org.uk/be/s-853-end-of-life-and-bereavement.aspx

Beyond words is a series of books aimed at explaining death to people who have a learning disability:  https://booksbeyondwords.co.uk/bookshop/paperbacks/when-somebody-dies

https://booksbeyondwords.co.uk/book-sets/bereavement-mini-set

PCPLD webinar talking about supporting people with learning disability in bereavement