Rachael Hansford
What are the messages are that you would like to get across to neurologists at this meeting?
Georgina Carr
We’re really pleased to be here at the ABN conference. It’s a really, really important opportunity for the Neurological Alliance and for our members to connect with neurologists across the UK. And that’s really important because we’ve got a shared goal of improving treatment, care and support for people with neurological conditions. And in order to do that, I need to understand as best as possible what’s on the minds of neurologists right now? How can we collectively improve services? What support can the Alliance offer? And what evidence do we need to change public policy? So it’s a really lovely opportunity to do all of this.
Rachael Hansford
You’ve been coming to the ABN meetings for a while – we’ve met here before.
Georgina Carr
Yes, this is my third one. It’s the best yet! But no, it’s always a really lovely opportunity. Particularly I think, post COVID, you know, for people to connect, to put names to faces of those you speak to via Zoom, and just really get that sense of a community because it really does feel like there’s lots of shared goals, shared experiences. And actually, it’s just one of those excellent opportunities to understand what needs to change and how we can work together.
Rachael Hansford
Yes, we were talking about changes in treatment plans. How has your being at the ABN impacted on the policy work that you’ve done? Can you track anything that’s happened over the last three years?
Georgina Carr
So over the last three years, there’s been a few things that have really come out. We for a long time have been talking about the importance of integrated mental as well as physical support for people affected by neurological conditions. And actually, we’re in the early days of this conference where mental health support feels really quite front and centre of the topics here today. And I think there is that growing acknowledgment, growing kind of need, if you like to think about how we can best integrate services, how can we work in a multidisciplinary way to show people how to get referral to the right mental health support, constant health support at the right time. And that just keeps coming through strongly each year that I come here.
The other thing really is just thinking about new treatments coming through, for conditions that don’t currently have any treatment options. So the most obvious example really is Alzheimer’s, where we’ve got disease modifying therapies coming through, which will undoubtedly have a big impact on neurology services. You know, if we think about the patient population that could potentially help. And actually, that means that the service is going to have to be constructed in quite different ways to how they are now. So although it’s extremely exciting that we’ve got lots of DMTs on the horizon for Alzheimer’s in particular, I know there’s a lot of fear out there, amongst neurologists, and particularly those who are already really over stretched. So again, just thinking about how we can work together to anticipate some of those changes. But also think about what we can do now to alleviate pressures on the service and for people to ultimately get a better experience from that service as well.
Rachael Hansford
Are there any concrete things that you can do now? Can you give some examples?
Georgina Carr
There’s a big policy push at the moment, around outpatient transformation, and obviously, a lot of neurology activity is outpatient care. So that’s things like people thinking creatively about how to make the most out of remote consultations, thinking about who they’re appropriate for, who they are perhaps less appropriate for, thinking about people’s information needs prior to going into a 10 minute consultation with their specialists. That’s obviously an area where lots of Neurological Alliance members have a good part to play, because we find lots of information to support people ahead of that, to make the most of time.
The other area that people think about a lot at the moment, is advice and guidance to primary care, and to referrers, so thinking about new models in which that can be provided quickly and easily and importantly, how NHS systems and IT can facilitate some of that and how it should be commissioned, appropriately and socially. But lots of concrete examples coming through. And helpfully, the NHS in England is also trying to curate some of those examples so that in general, just some others can put them into practice.
Rachael Hansford
I was talking to somebody earlier about MS. An older doctor and he was saying that he’s really noticed that it’s a more holistic approach to treating patients now.
Georgina Carr
Definitely. I think there is that growing acknowledgment that you need to be treating the whole person. We also need to be thinking about how people might make decisions about certain treatments, what matters to them in terms of their lifestyle, in terms of either the treatment regime, what burden is that putting on them, the daily tablet for example, and think about the monitoring regime around that. So definitely, I think it’s been really great actually, to see that change in practice, from lots of lots of clinicians. Also, just thinking about, say how people make decisions about treatments, but also how the friends and family might be thinking about some of those things as well, because friends and family are also really impacted by neurological conditions. So they might be prioritising different things, actually, to say somebody who’s living with a neurological condition as they make some of these decisions.
The final reason really why we’re here at the ABN conference, is because we’re about to do the next iteration of our patient experience survey. So the last time we did the survey was in 2020, 8,500 people took part; the ABN and lots of other professional bodies were really helpful in rolling it out and supporting it in clinic and elsewhere. Our goal this time is to try and get 12,500 people to get involved. So we’re going to be rolling out across clinics this summer, from the end of July, so I’m really interested in hearing from others on that and promoting it.
Rachael Hansford
Readers can find the link to the survey – and later the results – on the Neurological Alliance website.
