On Monday 12 August 2019, we were joined at our offices in Edinburgh by members of the Care Inspectorate’s internal palliative and end of life care group. The purpose of the session was to explore how the Living Well in Communities (LWiC) Team could work with the Care Inspectorate to improve palliative and end of life care for people living in a care home.

Why focus on a Living and Dying Well in Care Homes Collaborative?

There are 36000 people living in care homes across Scotland. In 2017 there were 11300 deaths of Care Home Residents. Ensuring that we get this care right for these people is important. (Data from the Scottish Care Home Census, available on the Information Services Division (ISD) website).

Between March 2017 and March 2019 LWiC delivered a programme of work in support of commitment 1 of the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care. This work highlighted how we could improve palliative and end of life care for residents, their families and people working in care homes.

For example, there was work taken forward by Riverside Care Home in Glasgow which saw the home using the SPAR tool to identify residents with palliative or end of life needs. This led to an increase in the residents with a jointly agreed care plan in place. These care plans help ensure that the wishes and needs of residents are met. From work elsewhere in Scotland we know there is a link between care plans that are shared using the Key Information Summary and being more likely to die outside of hospital. This is explored further in this article. We know that many people want to receive their care at home and this suggests that care planning is helping people have a better experience at end of life.

We would like to spread the learning from this work across Scotland so that other areas are able to benefit from the learning from this work. We think that an improvement collaborative would be an effective way of spreading improvement at scale across a range of areas. However to ensure that the collaborative would be successful we need to develop the content of the collaborative and make sure that there is an appetite for this approach.

To do this we need to engage with other national organisations, health and social care partnerships, care home staff, residents and their families and friends to establish how best to progress this work. We have identified that we must work in partnership with the Care Inspectorate. Hence why we held this meeting on the 12 August.

What did we talk about?

We had great conversations with our colleagues from the Care Inspectorate to share what have been doing so far, reflect on what we had heard and to discuss the scope of the collaborative. A particular issue that became apparent is our differing use of language and terminology, and we will certainly need to build a common understanding of this.

Everyone was really engaged in the session and we came away with some incredibly useful pointers and feedback. Most importantly we started to build some good relationships that will help us move forward with this work in collaboration.

Going forward

We are looking at how we can continue to work together so that we can harness everyone’s expertise. We also need to think about how we can work with care home providers, residents, their families and staff working in care homes.

Undoubtedly we have a lot more work ahead of us over the next year to engage, scope and develop our approach together with the Care Inspectorate.

Our next step is to hold a workshop with a small group of mostly national stakeholders to help us plan the next steps for this work. We aim to continue our conversations to explore how a collaborative, focused on palliative and end of life care in care homes, could make a positive difference to residents, their families and the staff who are delivering their care and support.

If you are interested in discussing this work, have any examples you would like to share, or would like to be kept updated, then please contact:  hcis.livingwell@nhs.net.

Please visit our website for further information https://ihub.scot/living-and-dying-well-in-care-homes/