Guidance will help those most in need

Scotland’s social housing sector and end of life charities have launched guidance helping social landlords provide compassionate support to tenants affected by terminal illness and bereavement.

Termed a practice note, it has been developed by charities including Marie Curie Scotland, Scottish Federation of Housing Associations (SFHA), Association of Local Authority Chief Housing Officers (ALACHO), Chartered Institute of Housing Scotland (CIH) and MND Scotland.

It offers a blueprint for social landlords to ensure people living with terminal illness and their families can remain at home where appropriate, and maintain dignity during the most challenging times of life.

Every year, 27,600 people in Scotland move home due to bereavement, with 13,200 unable to afford their current home and 11,400 losing tenancy rights. By 2040, over 60,000 people will die with palliative care needs, with nearly two-thirds of deaths occurring at home.

Terminally ill people spend 90% of their time in community settings, making housing stability critical. 

Ellie Wagstaff, senior policy manager at Marie Curie Scotland, said: “In social housing across Scotland, people living with terminal illness face substantial emotional and financial hardship as they navigate rapidly changing needs and often extensive waiting times for adaptations and accessible housing. There can be challenges around managing expectations, and concerns from social landlords about the right things to say. These challenges also extend to family members once a person has died.

“Home is more than a physical structure - it’s a place where people feel warmth, love and security. This practice note ensures that people living with terminal illness can stay in familiar surroundings and receive the support they need, while bereaved families still have a stable environment to grieve.”

SFHA chief executive Richard Meade said: “Ensuring tenants living with terminal illness, as well as their families and carers, receive all the support they need is paramount to social landlords.

“This practice note builds on the work housing associations do in collaboration with other agencies to ensure everyone is treated with dignity and understanding at such a difficult time.

“It recognises that people living with terminal illness have complex and changing needs, showcases best practice within the existing legislative environment and within a highly pressurised housing system. As home must always be a place for stability and security the examples in this practice note also, importantly, extends to include supporting family, friends and neighbours through bereavement.”

Cabinet Secretary for Housing, Màiri McAllan said: “Home, comfort, and familiarity with surroundings is of the greatest importance to people who are terminally ill and at the end of their lives.

“I welcome the publication of this practice note from Marie Curie which seeks to provide support in the most challenging of circumstances and has been developed in partnership with the housing sector. It sets out a blueprint on how social housing landlords, housing practitioners and advice services can ensure tenants and their families are treated with dignity and can access the support they need.”