Jacquie White, Deputy Director of NHS England Long Term Conditions, Older People & End of Life Care and Dr Eileen Pepler, Academic, Researcher and Consultant in the Canadian Healthcare discuss how NHS England work in chronic disease is being translated into a Canadian context.
Deputy Director for Long Term Conditions, Older People & End of Life Care NHS England
The Pepler Group, Academic and Researcher in Canadian Healthcare
US Healthcare Lead
Everything I described in terms of the data that we’ve been able to get as a result of understanding the questions that can be asked and now answered have started to be things that could be incorporated into those sorts of tools. These tools are so more sophisticated around what does the number of Long Term Conditions predictor tell us? What does frailty itself tell us? How do we incorporate social isolation? So we start to get a bit more sophisticated about the population and not just the health of the population.
We get a bit more sophisticated about what is the new whole-person approach that spans the system of health and care - that interact and are interdependent on each other - and how then we can drill that down into specific cohorts. So to the recovery rehab elements: how can we use that modelling and that data to bring an ability to predict some of those rehab needs for people on admission? I think it’s a fantastic opportunity to use all of the questions that we’ve been trying to answer and that we started to be able to get the data for to put them into a much more sophisticated approach to using those tools to do that sort of analysis and the diagnostics of your population.
It’s a question of how are you using your information to inform and make your decisions and how are you using your data to evaluate your decisions, and what data you’re pulling together. And so, one of the lessons I’m learning from Alberta in working with them on this workforce optimization is that whole piece is depending on who is in the audience. When you’re looking at using your data, you’re looking at using your data to inform your decisions then you can also use your data to evaluate and evaluate your strategic choices and the risks associated with those. So, that’s what we’re doing with Alberta. We’re using SIMUL8 and Scenario Generator to do just that. That’s my plan.
It’s two different things at once – It depends on where it’s coming from. Canada and the UK look at the chronic conditions differently. Jacquie talked about isolation and she talked about frailty being a chronic condition. Here in Canada we haven’t moved that far yet.
But in some Canadian provinces, frailty is considered a condition. Whereas in Ontario, isolation is being considered to be linked to chronic and it’s not so much that it’s a chronic condition. They’re looking at isolation not being a condition but an impact on the already existing chronic conditions.
We consider frailty as a Long Term Condition and can be managed and diagnosed in the same as others. But social isolation is the same burden as having another Long Term Condition.
I guess we stopped trying to define individual Long Term Conditions because the list is continually growing. It grows because we’re getting better at keeping people alive and then we end up with people who are in the kind of chronic conditions category like cancer for example. We’ve gone from treating cancer to keep them alive, cancer survivorship and cancer being a Long Term Condition. HIV and AIDS is the same sort of thing.
We’re moving into an era where people died but are now being supported to stay alive as well as possible and manage those diseases. But we haven’t had them as part of a Long Term Conditions approach until recently. So we’ve actually just started to define Long Term Conditions as anything that you can’t cure and people have to live with and be supported to manage them for the rest of their lives. It’s essentially anything that you have to help people manage and care for but we can’t cure.
We are working to understand if the types of conditions that people have make a difference to the type of support they need. And actually the answer is no in general. So, it doesn’t matter whether it’s a combination of any particular Long Term Conditions other than dementia. Dementia and other serious mental illnesses are specifically around the high cost for social care and support that’s needed. So, those would be the only two that are slightly different.
But what we found was that for most people, the services they require are about them as a person to manage their care better rather than their specific disease until the point at which that specific disease needed expertise or going into exacerbation or something like that and in which case obviously that was then about the specific condition or bits of their body that had gone wrong. But it was pretty much the 80:20 type approach that 80% of the care was standard but we need to make sure still that the right pathways and specialist care are there when needed.
For us it’s a focus on both healthcare management and the individual management of the disease. Instead of having cardiac rehab, pulmonary rehab, or another rehab you want to look at, actually most of rehab is common and there are certain bits that are about the body part. So, actually we’re starting to look more at one of the interventions that are across no matter what you’ve got but we need to make sure the specific expertise was brought into that as required rather than you go through that because you got cardiac problem when actually it’s not about the cardiac problem.
I was going to say that one of the things that’s really cognizant for us as we move forward with some of us Jacquie’s learning is that we have 10 different provincial systems. Ten different set of lists of what they consider as a chronic, how they’re wrapping their services. We have 10 different funding models in this country. We have 10 different legislative bodies that govern the models of care. As we learn from Jacquie we learn it’s a question of trying to help the government to look at the similarities across the country and what can we begin to standardize on so it doesn’t really matter where in this country you live. If you got a chronic condition of heart and you got three co-morbidities, this is what you can expect the services to be and this is how you can expect to get it delivered.
But we’re never going to get where the UK is as far as a national long-term care because of the different provincial jurisdictions. We’re a long way towards being able to understand even what it is that Jacquie’s doing. In Alberta, I would say that although they understand what Jacquie’s doing and how they’re doing it, they are probably five years out from actually being able to implement or roll out what Jacquie is doing. The only piece that I would say, Jacquie, that probably Alberta could use immediately is the Long Term Conditions simulation to be able to begin to understand the cost and the resource consumption of their current models and the impact the way their population’s moving.
Ontario I think is in between the two. Ontario certainly is a bigger province with 17 million people. But again, there are also ahead of all the other provinces as far as using nurse practitioners. And then of course today, we had some of the federal people, the Health Canada people, who set the policy or set the funding. But they are moving away from more of telling the jurisdictions how to deliver.
Regarding the question about weighting of long-term conditions, one of the things we looked at was the transition: how you move forward over time. Yes, one chronic renal disease does make a big impact and there will be a relationship between the condition that you first started with and what that ends up. And you could get more exact results from a modelling perspective by looking at all the data which looks at transitions, which might be useful for individual. It doesn’t seem to make much of a difference in terms of the cost and resource that you need.
At an individual level, the type of condition you have is important. From a planning perspective where you’re looking at the cost and the resource, then you don’t need to go into it from that perspective because it doesn’t give you much of a different result. Regarding your points Eileen: certainly of the different localities that I’ve worked with, although nationally when we started the program, we looked a certain number of conditions as being the core conditions and then added frailty and other factors as we understood more about it.
We knew that data we needed didn’t exist at the level we needed it. So we got the team together and they knew that half of the first year was a lot about collecting data at patient level. So we collected a lot of that data because it wasn’t there to help us start to do some of it and start to help them improve their own local data and the system to join it all up. So, improvement in data had been part of the whole process as we’d gone along and part of what we’ve built into and learning from what’s built-in to other programs around data.
Of course, we have the whole issue around what we could connect and then what we couldn’t connect after 2012 and the perceived changes that people got quite twitchy about in terms of data protection. In terms of being able to share what we were planning to we probably got about two years delay in the process. People are finding ways around that rather than us helping them because nationally, we still don’t have a proper solution.
This differs in different places and is very dependent on relationships. In places where it’s been successful in terms of progress, it’s been where they’ve had mature relationships already in place and they’ve been working jointly on the things anyway. They understand that as a whole system, there’ll be so much money, it’s the same people we’re trying to support, and actually this is about getting it right for them, not about entrenching into organizational cash flow and a bottom line type approach. So where it’s gone well? For instance, one of our teams in London has set up a specific model where they’ve taken people and money out of the acute trust, the community trust, social care, and voluntary sector on the basis that by combining all of these elements into this one delivery model for people who are quite complex, it will have a knock on impact on all of those services for really high utilization of a bed, community nurse or whatever.
So they used the simulation to make the case that this is how much this population is costing us because we’re not getting them right. So, we’ll take out these people and misfits to the contract to make this model work. But that will still save XXX because we think we can reduce that by what the model is telling us. So, some of this has been a leap of faith 30 people saying, “Right. We get this design. We realised this is the right thing to do so we will agree to do that on the basis that we believe these savings will come.” But it hasn’t been straightforward process. There’s still a lot for discussion, and obviously, things aren’t quite straightforward in terms of how they work.
It’s taking longer than anticipated but that’s why the relationships are really important. In other areas as well, they haven’t necessarily got these relationships it’s been about de-commissioning and re-commissioning in the usual commissioning, purchaser and provider terms. That’s not the ideal. So that example I’d just described to you -.not necessarily how they’re doing it but the approach that they use to get to buy-in and people can understand and get the pace of change and have that belief that it can work - it’s obviously what we would want everybody to be able to get to but people are at different points in all of this.
What we’re also trying to look at is where the other instances are that may or may not support. For example, in terms of where people’s social care versus means-tested social care in the UK, that can cause a different incentive. So people who aren’t able to get free social care, there is a bit of an incentive for the NHS to be left with those people in terms of the whole approach of care, because actually some of it isn’t paid for already.
So, from my perspective listening to you say that, what strikes me is that if we’re going to propose these sorts of approaches, we need to be targeting people who are participating in the Medicare insurance savings program, where they already have established a baseline. They’ve got a fixed amount of money that they’re trying to spend less than which then drives much stronger incentives than be kind of, “Let’s do good things and maybe some things will happen after that” because they have an established framework on it.