You mentioned the out-of-hours issue. When we look at the care of patients with complex, long-term conditions and patients with terminal illness in particular, out-of-hours care is where it often all falls down. One of our great achievements in Scotland is the key information summary, which is a one-Scotland approach to out-of-hours emergency information. It is heartening that that is in place, but we need to use it better.
There are lots of pockets of expertise where clinicians, teams, patients and carers have done workarounds, but nobody has time to pick their head up and look at what other people are doing, and nobody has time to take their local practice and make it more widely known. Again, somebody needs to have the overview to look at local practice and say, “Well, that is working really well there; I wonder whether it would work in different health boards.” We end up with lots of different areas of local practice and disparate effects. One of the things that we know is that patients who have a terminal illness absolutely need a key information summary—a KIS—and one of the visions for the Scottish Government is that, by 2021, every patient who would benefit from a KIS in Scotland will have one.
We know from the figures that Marie Curie has collected that approximately half of the patients who died in Scotland last year who had palliative care needs had a KIS in place. We are getting there, but we are far short of the mark. We also do not know what the quality of that KIS information is.
When the patient hits the front door for secondary care, how many of those clinicians know that a KIS exists, how to access it, and how to make use of the information? The quality improvement work that we did in West Lothian showed that, of the patients who had a KIS, only 4 per cent of the information was accessed when they hit the front door of the acute hospital.
Quality improvement work can improve that, but all these projects are happening right across Scotland and nobody is pulling it all together. That is a system that we have in place that could work dramatically well to change patient care overnight if we resourced it and did it properly.
That is not to mention what we need for the future. The KIS is fine, but we have pushed it as far as we can. For the complex level of advanced decision-making that we need to meet patients’ future needs in Scotland, we need something much more sophisticated and accessible.