Helping people to live and die well using social investment: The team behind RIPEL, an innovative palliative and end-of-life care service in Oxford

“We had realised that there was a gap in the services that we were offering. And the gap was particularly about the speed of response and the intensity of response that we could offer, particularly in the community. Because we do know that some patients have needs that are very significant for a short period of time – not always continuously – but during that crisis. So, then it’s really helpful if we can just ramp up the intensity of our response and also the speed of our response for those people.

The other aspect to this is that when people are dying at home, for some families there is a need for that extra personal care; that extra confidence building, that allows the patient to remain at home at the end and to be safe and comfortable and dignified. That’s really important. 

We already had a sort of telephone triage service, so people could phone in. But of course, there’s a limit to what you can do if you don’t have those other services to be able to respond to the need that you’re hearing on the phone. So that was causing quite a bit of distress really.

So, we were conscious of all these needs and we were thinking — how could we shape the service differently. And we were also thinking that if we tried to shape the service differently there would be a period when we would be cutting out something else, so it was really difficult to try and work that one out.

Then the opportunity came up with Social Finance and Macmillan Cancer Support to think about how we could do this in practice. We were quite ambitious, and we wanted to design something that was truly comprehensive. We also knew that we needed room to make changes. And we needed room to fail in some aspects, and to shift, because all of it was in our heads.

We had a lot of support from the Trust and different people in the Trust in terms of working out what we needed. Having the money upfront gave us the confidence and gave the Trust confidence that it was OK; that we could keep adjusting, we could keep redesigning as we went along – that was a really powerful part of it.”

“Social Finance helped us to develop a Power BI dashboard to view the data we hold about RIPEL patients in a more logical way… so that we can investigate it more thoroughly. 

So, it’s not just knowing that RIPEL patients are spending less time in hospital. It’s also knowing the equivalent value of the bed days that we’re saving. So that’s why it’s been a powerful metric for us to use to be able to discuss with our funders and our commissioners to say that it makes sense.

Now that staff in the department are much better equipped to deal with data – their data handling and knowledge of where to get the data – there’s much more of an understanding of what data there is and how we can use it to focus on what actually matters to the patient. 

For example, does it matter to patients that we’re seeing them quicker? And does it mean that their subsequent hospital activity is less because we’re able to help them quickly at the start rather than firefighting at the end? 

So, we’re focused on the outcomes and getting the message across, not just internally within our service, but also in the wider system within our hospital and within our ICB network so that we can convey better how what we’re doing is making an impact. 

And that’s certainly something that won’t go away.”

“The patient was referred by their GP after they had seen them at home and could see things were heading towards a crisis. 

From my assessment on that phone call, I could see that things were quite serious for them and were changing rapidly. There was a lot of anxiety and distress in the house and I could see that the patient was struggling with mobility and falls and that presents quite a risk in the environment, which is where our occupational therapy team comes in.

So I contacted the therapist on response duty that day and asked if we could both see them urgently. 

As part of the RIPEL service, every day there’s somebody available for each part of the county to be able to respond urgently to things that would need same day response.

So we’ve got that preserved time now, so I know that my whole day is going to be on response.”

“We spoke to the patient and their family about the patient’s diagnosis, but then we also spoke about some of the challenges they were having, and would continue to have as the illness progressed. 

And we did a joint assessment where we could look at medication needs and symptom management as well as the really practical things about how they were going to cope as the patient moved to the end of life.

The patient’s partner had to go back to work and they wanted to keep life as normal as possible. But there were risks, for example, the patient might fall down the stairs getting to the upstairs bathroom when they were on their own in the house. 

We were really looking at it from a very holistic point of view. We were trying to come up with some creative solutions that would empower and enable the patient, giving them quality of life and access to the normal activities of daily living, while balancing that with keeping them safe.

We talked about ways that we could minimise risks and I did some assessments and lots of measurements for handrails etc, so I could order equipment that was needed. 

And we talked about carers coming in a couple of times of day as a safety check to make sure the patient was OK, that they hadn’t fallen and that they had eaten. 

So being able to go out really quickly and then refer them to the Home Hospice care team who put together a crisis care package – that really helped that person to stay at home for longer with their family.”

She says: 

“We got them through the first crisis; but we will have to keep checking in and reassessing to make sure that we’re still optimising the medications, and that the situation that we set up is still working for them. We also have to anticipate what the next crisis may be so that we’ve got measures in place to support the whole family.

If we didn’t have the RIPEL services, it might have taken longer for one of us to get out to them and we would have struggled to find care – that would have left that family in crisis for longer with a great deal of stress around them and a lot of big questions hanging over them.

It makes the job so much more satisfying for everyone – most of all because we’re able to help patients much more responsively because we’ve got access to a service that is absolutely brilliant. We can do phenomenal work which avoids people having to come into hospital or coming to the Hospice when there’s such a pressure on beds.”

“If a patient phones into Palliative Care Hub they will get prioritised, they will get spoken to that day. A plan of action will come out of that. If they are unstable, they will be seen. And that’s just something that didn’t happen before RIPEL. 

Before RIPEL if a patient contacted us they might not have got a call back that day. If they’d have said I want to speak to Joe who’s not on duty until tomorrow, that call would be left until tomorrow. Now there’s a system in place, so that somebody responds to that patient when they need it. 

Most people at end of life don’t want to spend more time in hospital than is absolutely necessary. Almost always they’re going to be more comfortable and less anxious in their own environment. But not if they don’t have the right equipment, or the people around them can’t cope. So we need to support the patient and those around them so they know that when they say ​“help” – something happens that makes the difference.”