Royal College of GPs partnership, year one

A key thrust of the first year of the partnership has been looking at commissioning in England. There's been a major change, really, in the way things have been operating in England since the Health and Social Care Act came in. It's given GPs a new opportunity to have influence on how service is delivered, and obviously, with the link between Marie Curie and the RoyalCollege, my role is to look at commissioning of end-of-life care.

Throughout November and the first few weeks in December, working with Marie Curie, I've done a tour of England, going to Liverpool, Newcastle, Solihull, Norwich, London, and Bristol. The main theme of this has been building on the Royal College of GPs commissioning guidance for end-of-life care, but also linking it with the work of the King's Fund. They'd given ideas for priorities for commissioning that I think actually have proved to be very useful to GPs and commissioners, because there are lots of things that could be done and sometimes having a clear focus on what to start off on is really helpful.

The four areas have been really making sure that services are available in a community that can deal with the rapid discharge from hospital. We know the majority of people don't want to end their lives in hospital. They would much rather be at home or their usual place of residence, and yet far too many people don't manage that. To have services in the community to allow people to come out quickly is a priority, and that's been an area that's, going around the country, certainly there's a need to develop that.

Another is a rapid response facility for people that get . . . if a carer gets exhausted in the middle of the night, there's some means of getting help quickly instead of dialing 999, and so we've been looking at that.

We've been looking at coordination of care. Patients repeatedly say that they want their care to be better coordinated, and we've been discussing ways in which that can happen, sometimes electronically. That, hopefully, will be a development over the next few years, the electronic palliative care coordination system is a key priority of my work over the next year or so.

Perhaps the most important thing, I think, in most parts of the country has been the availability of 24 hour nursing. Ideally district nursing, possibly backed up with Marie Curie services or hospice at home or a blend, but certainly making sure that patients have got the availability of skilled nursing when they need it. For example, if you have drugs at home for dealing with symptoms like pain, if there's nobody that can actually administer the drugs, then you've got a real problem. That's been another area that we've looked at commissioning in these workshops.

One of the major challenges is identifying people who are in the last year of life. It's never particularly easy. With cancer, it's probably easier than with other diseases. We've learned an awful lot from the way end-of-life services have developed, mainly looking after patients with cancer over the years.

The challenge is transferring that learning and that quality, that's undoubtedly there, to patients with other conditions. The other conditions that are challenging are organ failure, heart failure, and COPD, renal failure. The difficulty is that there is a great fluctuation in the trajectory of people's condition towards end-of-life. So they can be really poorly one moment, but then, thankfully, get better. It's very difficult to know when to put end-of-life services in. You almost need to design systems whereby services can go in and then come out.

The uncertainty around organ failure, frailty and dementia, just generally old age, the uncertainty about when death will occur is actually quite a barrier to people opening up the conversation. I think there's a great fear that we will upset people. I'm not sure there's a great deal of evidence that that's the case. I think sometimes people actually, if you're open to listening to people, they're actually quite keen to tell people, GPs especially, their preferences. One of the major issues is actually encouraging a shift towards earlier identification of patients that might be in the end of life, because we know that if we identify them, there's more chance they will get what they want, and there's more chance they'll get better care.

Another key area is advance care planning. We need the skills and attitudes to be able to do that, because that will enable us to find out what people's choices are, and once we know that there's a much better chance of delivering those choices, especially if GPs have got the willingness to share the information so that patients don't have to keep telling the same story over and over again if they don't want to, but their wishes are shared and respected amongst all the people that might care for them in their last days of life.

As I understand it, the HSJ Barometer suggested that 66% of commissioners identified that there was a problem with discharging patients from hospital into the community, because the provision of 24 hour care was limited or restricted and they didn't really have confidence that the care was good enough. That's part of the reason why the hospital death rate in this country is higher than in other countries, such as Ireland and Holland.

It's completely consistent with what I found on the workshops that I've run around the country with Marie Curie. There is definitely an issue. What I have found though is that there's the determination to do something about it, and I think a great positive thing about the workshops that people have been quite creative and gone away and considered how they can perhaps work differently and use money differently to provide 24 hour nursing and better quality services around the clock for patients at home.