At the Nuffield Trust we have just published a report that uses routine information to offer a new perspective on care services at the end of life. We were aware of the importance of end of life care, both in terms of problems in the quality of services and the costs of these services. We also know it’s an area where there is limited information yet a lot of national interest.
Following a meeting with Mike Richards, the National Clinical Director for End of Life Care, and the National End of Life Care Programme team, it became clear that maybe we had some information at the Nuffield Trust that could help.
We had done some work looking at how you predict whether a person is at high risk of using social care that required us to collect and link anonymised data from health and social care records. This meant we could pick a large group of 16,000 people who died, and look at what services they received in the last months of life.
As far as we are aware there are no other analyses in England that summarise social care use at the end of life on anything like this scale. Despite the interest in integration and joint working, the ability to look at information that spans both health and special care is sadly still rare.
What we were able to show is that around a third of people access some local authority funded social care in the last year of life. This could range from meals on wheels to nursing home care. The use of council funded social care did increase during the last year of life, but did not show the dramatic increase seen in hospital use in the last six to eight weeks.
What is most interesting to us was that we could map out how hospital inpatient costs tend to be lower in the oldest age groups and for people with the highest social care costs. These observations prompt a lot of questions about what underlies these differences and what is appropriate and good quality care in different care settings.
Though we could not answer them we could at least point to the scale of interaction between health and social care functions. Though this is new territory for me personally, I can’t help thinking that it would not be for my mother who spent many years as a social worker based in a cancer hospital.
Whatever underpins these results, I think the ability to use information in this way is exciting. Publicly funded care services spend millions of pounds on computerised information systems, and quite rightly use them for all kinds of basic management tasks. We have shown that you can extract the underlying data in ways that protects peoples’ identities, and use it to look at overall patterns of care.
Bardsley M (2010) ‘Social care at the end of life’. Nuffield Trust comment, 8 December 2010. https://www.nuffieldtrust.org.uk/news-item/social-care-at-the-end-of-life