Is PBC up to the challenge of improving end-of-life care?

Alisdair Stirling asks our expert panel what scope there is for PBC to take on end-of-life care

Should end-of-life care be of interest to practice-based commissioners?

KT: Absolutely yes. Some 40% of people who die in hospitals needn't – and half of the residents of care homes who die in hospitals needn't. The frail elderly is the group we can do most for by keeping them in the community and preventing inappropriate admissions.

JP: Our end-of-life care service went to contract this week. It's county wide and covers a potential 680,000 patients – probably the biggest in the country. GPs tend to deal closely with people at the end of their lives so they have a real insight into what is needed and how the system needs to be organised. That's why it is an absolutely natural step for PBC groups like us to take over end-of-life care.

JM: It's a no-brainer. It's great for patients and for carers. It keeps patients out of hospital and it's less expensive. It's also a great chance for PBC groups to create relationships with different local stakeholders and there are great benefits in that alone. It's a very good way of bringing providers together and raising the profile of practice-based commissioning.

End-of-life care has traditionally been commissioned by PCTs. Is that likely to change?

KT: I would love it to change. It's now a big opportunity for PBC. GPs nowadays have a lot of clout – as well as the heart to do it.

JP: Our PCT specifically asked us to take it over last July, as they were feeling frustrated with the way things were working. Making a business case was straightforward as it will be funded by the savings made from reducing the number of people who die in hospital. I think more PBC groups – even small ones – could take on end-of-life care. The more that PBC groups take it on and share what they've learned, the easier it will be for others to follow.

PP: It's difficult to say what the new Government will do, but I think local GP control over end-of-life care is likely to continue to grow and will form a fundamental part of the system. However, end-of-life care differs from what PBC groups have traditionally taken on because it cuts across primary, community and secondary care, particularly in the case of cancer. End of life can be very different for different people and whatever system we have has to meet these differing needs.

What lessons can we learn from PCTs commissioning of end-of-life care and where is there real room for improvement?

KT: What GPs and PBC groups can do that PCTs often can't is to link the services together to make a seamless experience for patients and carers. You have to go with what works such as using the best practice examples in end-of-life care. For instance the Gold Standard Framework (GSF) has been shown to reduce hospital admissions, often by half – especially from care homes. Don't re-invent the wheel. Use what has been shown to work but make it fit your area. You need to develop local ownership and find solutions that fit your local picture, although many of us face the same kind of issues across the country.

In the past there has been a strong focus on cancer patients but the big, booming, group is now the frail elderly, with multiple co-morbidities and sometimes dementia. This is the group who are most vulnerable to over-hospitalisation and who we can do most for. Some 85% of patients who die are over 65. End-of-life care in the community needs to focus on these very vulnerable patients as well as on the more obvious cancer patients.

JP: The biggest problem in our area, Northamptonshire was access to services. GPs and district nurses just wanted one number to ring rather than have to spend four hours getting all the components of care into place.

Commissioning a new end-of-life service from scratch allowed us to introduce a care co-ordination centre that patients and GPs can contact. It can activate a rapid response team available 24/7, 365 days of the year. Specialist palliative care nurses will visit patients as a back-up to stop them going into hospital or alternatively, where patients can self-manage to some extent, they might not need a high-level nurse. They might just need help with shopping or to attend an outpatients appointment – and we can supply help with that too.

County-wide, our service will prevent 300 admissions in the first year, 450 in the second and 600 in the third, representing a 22% return on investment.

PP: What needs improving, from my perspective, is out-of-hours care for patients at the end of their lives. This is when patients can be at their most vulnerable and some areas are doing better on this than others. It's not rocket science to sort this out. At Macmillan, we're working with stakeholders including GPs to create a portal of good practice that practice-based commissioners and other providers can use to ensure patients get the care they need out of hours when they need it most.

Another area PBC might tackle is making sure the right information gets to the right people at the right time. It's not always easy to co-ordinate but GPs have generally got a good handle on their practice population.

Self-management is another interesting area – particularly in cancer. A lot of patients want to do it and there is quite an appetite among health authorities to encourage this. Macmillan is currently looking at how commissioners can take this on board.

JM: Some forward-thinking PCTs have got hold of the issue of end-of-life care but it hasn't been high enough on their radar generally. There's not enough data widely available. What PBC can do is to take a fresh look at where to make the biggest impact.

Do you need large amounts of investment to pump-prime service redesigns in end-of-life care?

JM: You don't need a massive amount of cash but you do need to identify the problems and target resources at them rather than waste money on the wrong things. The service can pay for itself in terms of savings on hospital admissions. The turnaround is so quick that you can see a return even in 12 months.

PP: If you're looking at service redesign, you don't always need massive amounts of cash. PBC has traditionally been a mechanism to release funding and in the long run the service will pay for itself. I would want savings to be ploughed back into 24-hour community nursing first of all. They could also be used to fund training for GPs and nurses in communication and integration.

KT: It shouldn't be too expensive. I'd be suspicious if it was. Setting something like this up is about reallocation of resources, with improved enablement and training, leading to greater competence and confidence of generalist staff. It's about helping people to do what they already want to do.

JP: We haven't really spent any money so far. It doesn't take much cash but you do need a lot of time to assess current provision and design the appropriate services and then find the right providers – in our case, Prime Care in association with Help the Aged.

What's the first move for practice-based commissioners looking to improve end-of- life care locally?

JM: You need to look at the data – understand what the problem is so you can fix it. The third sector has a lot of expertise. I would want to get them on board early on.

PP: The starting point will vary depending on the proposal but it's generally about understanding the need and bringing in the right agencies. It's broader than just social services and health. The care homes need to be brought on board too.

KT: You need to start by looking at the local data. Map the story, plug the gaps. Sometimes what's needed is an investment in extra district nurses and better access to drugs out of hours. But often it relates to strategic planning and better identification of patients near the end of life.

My only real question is this: do PBC groups always have the capacity to take it on? Not all will, but for those who do, working with other providers – especially the third sector – is the way forward.

JP: You need to start with finding out what GPs, carers, patients and everyone wants. When we began looking at this last July, we canvassed locality commissioning meetings and the Carers Association. That enabled us to focus on creating a single point of contact and rapid response – the most high-impact areas. We then had to go to full procurement with the PCT and the business case was approved last October. We got to preferred bidder stage a month ago and we´re planning to launch on 26 July.

Alisdair Stirling is a freelance journalist

Professor Keri Thomas (KT) - RCGP clinical champion for end-of-life care and honorary professor of end-of-life care at the University
of Birmingham

Dr Johnny Marshall (JM) - chair of United Commissioning, Buckinghamshire, and chair of the National Association of Primary Care

Julie Passmore (JP) - programme director,
Northamptonshire Integrated Care Partnership, Nene Commissioning

Phillipa Palmer (PP) - head of healthcare, Macmillan Cancer Support