Guidance for Occupational Therapists to support people living with a terminal illness

Leading end of life charities, as well as The Royal College of Occupational Therapists and a number of practicing occupational therapists have launched a practice note to support occupational therapists who have recently started working or training in the area of terminal illness to support patients with housing adaptations.  

The practice note, developed by MND Scotland, the Royal College of Occupational Therapists, consultants and neurology occupational therapists, Association of Local Authority Chief Housing Officers (ALACHO), and Marie Curie, offers guidance for occupational therapists on supporting people living with terminal illnesses when they require housing adaptations.  

Having a safe and accessible home is critical to enabling someone to live with the dignity and care that everyone deserves. Towards the end-of-life when people can spend almost 90% of their time in home settings, people living with terminal illness usually need changes and adaptations to their homes to enable them to live at home as well and as safely as possible. This involves having to navigate rapidly changing needs and often extensive waiting times for adaptations. Waiting lists in some local authorities have been reported as being as long as 15 months for a ramp, and almost 9 months for a wet room.  

With input, advice and tips from practising occupational therapists, this practice note focuses upon the powerful role that occupational therapists play in supporting people at one of the most difficult times of their lives. The practice note highlights: 

– Human-rights based approach and guidance around how occupational therapists can support with fast-tracking housing needs for individuals with terminal illness  

– Advice on identifying early and future needs that people with terminal illnesses might have  

– Support on how to frame difficult conversations around the future  

– Signposting and empowering patients and their families when housing challenges remain.  

Dr Jane Haley, Interim CEO and Director of Research at MND Scotland, said: “We hear every day from people who are facing devastating circumstances around housing. The impact of long waiting lists, a lack of proactive policies and budgetary squeezes are creating a situation across the country where people with conditions like motor neuron disease are left trapped in a single room, unable to leave the home, being dragged up and down stairs, experiencing falls and hospitalisations, and living without dignity. This practice note shows how even small actions and conversations can make a huge difference to housing circumstances and support the needs and pressures which face those living with terminal illnesses and their families in this part of their life.”  

Katie MacGregor, Policy and Public Affairs Lead for Scotland at the Royal College of Occupational Therapists, added: “Occupational therapists are key to supporting people with MND to continue living in their own homes. They can help people get assessments more quickly, advise on equipment and adaptations and help improve someone’s quality of life. We’re delighted to have collaborated on this Practice Note to make sure people living with MND and their families have access to the essential support they need when they need it.” 

Cabinet Secretary for Housing, Màiri McAllan MSP said: “Housing adaptations are essential in enabling individuals to remain safely and comfortably in their own homes for as long as they choose. Occupational Therapists play a crucial role in assessing need, coordinating support, and ensuring the effective delivery of adaptations. I welcome the publication of this practice note from MND Scotland and the Royal College of Occupational Therapists, which offers clear, compassionate, and practical guidance for Occupational Therapists supporting people living with a terminal illness. This resource represents an important contribution to improving person-centred care and ensuring that individuals receive the support they need at the most critical times.  I would like to express my thanks to everyone involved in producing this practice note which will support people living with terminal illness and their families across Scotland.”