>>Ed Richfield: Hello, my name is Ed Richfield. I am an elderly medicine consultant working
in Leeds, subspecialising in Parkinson’s disease, and my PhD was looking at end of
life care for people with Parkinson’s disease and that is really why I was asked to get
involved in part of the RightCare project. The RightCare project is really interesting
as applied to Parkinson’s disease. Parkinson’s is a chronic, life-limiting disease, but people
live with it for a long time and so it is well-suited to methodologies which are trying
to produce integrated models of care, so that we can look to improve care from the time
of diagnosis. If we look at the differences between the
optimal and the suboptimal pathways presented here, then really we see a paucity of links
in the suboptimal pathway, and those are links from the community into hospital care, but
also within hospital care, between specialists and subspecialists. And we see the impact
of that, and those impacts, I think, are felt at an individual level. So, for example, we
see a lack of information around diagnosis causing problems further forward; we see difficultly
in the person with Parkinson’s disease and their carer, in terms of accessing services
and being aware of services; we also see problems at a wider level, in terms of increased numbers
of admissions and increased lengths of stay. And so the optimal pathway, really, is seeking
to try and address that, both for the individual and also at a systems level, and so a lot
of that is focused on improving links; links from the community into hospital, links between
specialist and non-specialist. And we see often, don’t we, that the Parkinson’s
nurse specialist is the key person there. But I think most people who have worked with
people living with Parkinson’s disease for some time would say the Parkinson’s nurse
specialist is often uniquely placed to try and address that, so they can have a foot
in the community and a foot in the hospital; they are able to follow somebody through in
a way that, perhaps, their consultant is not able to.
We often talk about patient-centred care, don’t we? And I think patient-centred care
is at the heart of this, and, again, that is key for the individual, for their carer.
Can we help them to make decisions which are appropriate for them; which take into account
their needs, their preferences, where they are within their experience of living with
Parkinson’s disease? But it should not really be a choice between patient-centeredness or
efficiency, and I think the real message here is to say can we design systems which are
responsive, which can be patient‑centred and, within that, and in fact because of that,
become more efficient by reducing some of the harms associated with a lack of patient-centeredness.
We know that carer strain is really common in Parkinson’s disease; it has been well
characterised, there is lots of literature about it. We know that it progresses as the
disease progresses, we know it is related particularly to the burden of non-motor symptoms,
which are described in the pathway. And yet, even with that knowledge, I think we would
have to say we are not often great at trying to address that. So, again, can we become
more responsive, more aware of the risk of carer strain, and develop ways of working
which help to improve the care for the individual but also for their carer? And a lot of that,
I think, is about being aware of need, so we pick it up early, and maybe even being
able to anticipate need. There is something that may come down the line here; let us put
something in place to try and address it before it becomes a problem.
Again, I think we have to emphasise there the role of the Parkinson’s nurse specialist.
This ability to have a wider overview of somebody’s care; to follow them through, to maybe visit
them at home, to be liaising with their community colleagues. And within that, there is probably
a dual aim, isn’t there? So the dual aim here, as we have hinted at already, is about
improving the life and the experience of Parkinson’s for the individual and for their carer, but
also developing systems which are able to work in the current healthcare climate. And
I think the key to that is likely to be around integration. We cannot have a one-size-fits-all
policy in terms of system design; what we are looking for is to be integrated, to be
responsive, to be able to anticipate and respond quickly to need, and to allow systems to develop
which work across borders, across community and hospital medicine. And those are aims
which are not unique to Parkinson’s disease, it is something that, obviously, is quite
a hot topic throughout the NHS, but I think it is something which Parkinson’s disease
would benefit from and this is an opportunity for us to try and develop that.
So what are the next steps? Well, I guess the next steps are to try and put some of
this into practice; to learn from the knowledge base that we have got; to develop systems,
initially at a local level and then wider systems which allow us to be integrated, to
be responsive. And those processes have started and some of the tools are out there which
can help us to do that.