Care at Home and Housing Support Conference “Trees that Bend in the Wind” Exploring the experiences of front line support workers delivering palliative and end of life care Care at Home and Housing Support Conference 12 May 2017 #bringhomecare

Becca Gatherum and Katharine Ross Scottish Care

Why undertake this research? In Scotland, around 54,000 people die each year. By 2037 this figure will be 61,600. Over 200,000 people each year are significantly affected by the death of a loved one Aim of Strategic Framework on PEOLC (2015) highlights the importance of staff, wherever they and whoever employs them, having a sense of feeling adequately training and supported to provide the PEOLC that is needed.

Lack of sufficient education and training “I hadn’t realised that death can happen so quickly” “I don’t know when somebody is dying and what the signs are. Why don’t I know?” “The external palliative and care team are just another set of instruction givers – we don’t feel any more included or valued.” “There is no support…no team around you.”

Poor communication “We usually don’t know what people want – who is having these conversations? Is this our place? We’re scared to say the wrong thing.” “Sometimes we are not even told that the person is coming home to die. I think that’s bad…you need to be aware, the staff need to be aware…you need to plan for palliative care.”

Isolation and lack of support – during and after a death “Every time you go in, you don’t know if she’s going to be there. But you get used to that feeling. People who go suddenly are more difficult to cope with.” “Lone working makes your fears grow. Ten visits to make after experiencing a death…you just have to make it work.”

Managing emotions “Emotions are much harder to deal with than the physical care.” “Frustrated, sad, angry, guilty, unrealistic expectations….we are responsible and accountable for providing palliative care. This is often undervalued.”

Inspiring experiences and stories “People seem happier to die in their own home. I’m comforted by that.” “We cared from somebody in their own home. After they died, we went in to strip the bed and return the room to normal because we knew his wife couldn’t handle doing that. We did it in our own time.”

“Everyone I’ve looked after….…they’re in here. They’re in my heart.”

What we’re doing….. Working with colleagues throughout health and social care at local and national level Undertaking a test of change in Glasgow Creating a PEOLC Workforce Group for care at home providers: Tuesday 30th May Renfield Centre, Glasgow – 10am –12.30pm Continuing to ensure the voices of the front line of social care are heard

Bluebird Care Edinburgh Joanne Bilsland Bluebird Care Edinburgh

and please get in touch! Thank you becca.gatherum@scottishcare.org katharine.ross@scottishcare.org