Episode 17 – Living with the Impact of Neurological Disorders

Released on World Brain Day

In this episode of the One Voice for Neurology podcast, we explore the lasting and often invisible impact of neurological disorders on individuals, families, and carers.

We begin with a focus on encephalitis, featuring Dr Ava Easton from Encephalitis International. She discusses the causes, long-term effects, and the importance of the new WHO Technical Brief on encephalitis—developed in partnership with the organisation—and how that aligns with the goals of the WHO’s Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders, particularly around improving diagnosis, care pathways, and support systems.

We also hear from Subha, a young woman living with encephalitis, who shares a moving personal audio diary about her journey and the reality of adapting to a new normal.

Later in the episode, we turn to palliative care. Tracey, a carer for her husband Nick, reflects on their experience and how early palliative care helped them navigate uncertainty and improve the quality of life for them both.

To close, Professor Dr David Oliver from the OneNeurology Palliative Care Working Group explains how palliative care can be better integrated across neurological care—taking a holistic and multidisciplinary approach—and why it’s vital at all stages, not just at the end of life.

Together, these voices show the progress being made through better research, partnerships, and advocacy—and the ongoing need for greater awareness, education, and more person-centred support, all of which underline the profound and enduring impact of neurological disorders.

Transcript

Sam Pauly (00:05):

Welcome to the One Voice for Neurology podcast, a series of podcasts exploring why it's time to make neurology a priority, how that can be achieved with a global and uniform approach, and what that could mean for the future of neurology and those living with a neurological disorder. I'm Sam Polly and you are listening to episode 17, living with the Impact of Neurological Disorders. Hello and a very warm welcome back to the One Voice for Neurology podcast. In this episode, we're going to be exploring the lasting impact neurological disorders can have, not just on those diagnosed, but also on their families and carers and the systems and approaches that support them. We'll hear from the one Neurology palliative care group about why palliative care is about living well, not just end of life care, and we'll spotlight in Encephalitis International's recent partnership with the WHO, which produced a landmark technical brief to improve awareness, diagnosis, and support globally. We'll also hear personal, patient and carer stories that vividly bring these experiences to life. So let's get started and to start us off to tell us more about encephalitis. I'm joined by Dr. Ava Easton, chief executive of Encephalitis International. Ava, thank you so much for being with us. We're really delighted to have you.

Dr Ava Easton (01:35):

Well, thank you so much for having me on the show. It's my pleasure.

Sam Pauly (01:38):

I wonder if you could start off favor by explaining a little bit more about encephalitis because perhaps not all of our listeners may have heard of it. Could you maybe tell us what encephalitis is and how might somebody develop it?

Dr Ava Easton (01:51):

Absolutely. Well simply put encephalitis or encephalitis, however you want to say it. So we tend to call it encephalitis in the UK and then in the US and some other countries, they call it encephalitis, but generally it means inflammation of the brain and it's caused either by infections, ordinary everyday infections that many listeners might be familiar with, such as the measles or the herpes simplex virus. That's the cold sore virus, or it can be caused by a person's own immune system going wrong and attacking the brain in error.

Sam Pauly (02:26):

Is there anything we can do to prevent it? Any behaviors or actions we can take to prevent it?

Dr Ava Easton (02:32):

Well, many causes of encephalitis aren't preventable unfortunately, but some causes are. So some causes of encephalitis are vaccine preventable, and so for example, measles is a perfect example because we've got outbreaks of measles all around the world again at the moment. But measles can cause encephalitis that's vaccine preventable and other things that exist in other countries such as Japanese encephalitis or tick ball encephalitis. So some forms are preventable, but many of the forms such as an encephalitis caused by the cold sore virus are not preventable. So all we can do there is treat the symptoms and hope that the person's own immune system for the infectious causes we'll win out.

Sam Pauly (03:17):

I mentioned in our first question that maybe not everyone's heard of encephalitis. Do you think there's good awareness around it?

Dr Ava Easton (03:23):

No, I don't think there is. I mean, I think it's one of my life's missions to increase awareness of encephalitis around the world, and we do that through a global campaign called World Encephalitis Day, which is on the 22nd of February every year. What I would really like to see is that encephalitis is at the forefront of people's minds in the same way that they know what meningitis is or what sepsis is, for example. I think that not only would that help with diagnosis and treatment because getting speedy diagnosis and treatment is really important in encephalitis, but it would also help the patients, people that have been affected by the condition to have some understanding in their communities as to what they've gone through and the difficulties that they face going forward.

Sam Pauly (04:10):

Well, let's talk a little bit more about that. That leads us very nicely onto my next question. What kind of impact can encephalitis have on a person's life, both immediately and also in the longterm? What challenges or difficulties does it potentially present?

Dr Ava Easton (04:24):

It can present a lot of difficulties. First, encephalitis has a high mortality or death rate, so depending on the cause, up to 40% of people could die from this if they were affected for people who survive the condition. When you talk to people, they often call it a thief that it's robbed them of the things that we so often take for granted, like our cognition, our thinking processes, people can have profound memories lost, and people also describe this profound change in themselves in their sense of self, how they feel different afterwards and changes in their behaviors. But people can also have physical issues such as epilepsy or pain, for example, changes in their sleep patterns. And of course all of this can lead to family and social impacts and difficulties for people returning to work and education. Of course, many people don't return to the life that they once had, and I think it's probably also worth mentioning that because the brain, it's the that's affected, that's often hidden. So this range of hidden disabilities that people have, we talk so much about looking after our hearts, looking after our livers, but rarely do we talk about looking after the one thing that's commanding kind of the orchestra of our life in a way, and that's our brain.

Sam Pauly (05:45):

In terms of globally, is there any variation or much variation in how common encephalitis is or the causes of it?

Dr Ava Easton (05:53):

Yeah, there is our data around what we call incidents or how encephalitis is actually quite poor, but we're currently estimating around about one to one and a half million cases a year. So that's three people every minute. It does vary around the world. There are some causes like the measles, the flu, and the cold saw virus that can affect anyone no matter where they live, but there are other causes that occur in specific locations. For example, Japanese encephalitis, which exists in Southeast Asia and the Pacific Islands. West Nile virus is another cause of encephalitis that's across Africa and Europe, the Middle Eastern and North America. So there can be what we call geographically specific causes, but then there are others that will affect people all over the world no matter where they live.

Sam Pauly (06:44):

And you were talking about the impact just a moment ago of encephalitis. Does the impact of encephalitis or access to treatment and support, does that vary depending on where you might be living in the world?

Dr Ava Easton (06:55):

Yes, yes, it does. I think access to treatment can vary depending on where people live. As you can imagine, where resources are more limited, such as in low to middle income countries, the impact of the condition can be much worse. Much graver in those countries, some of the basic diagnostics required and treatments simply don't exist, and in some countries they don't have doctors, the doctors that are best placed to treat patients with encephalitis such as neurologists. So for example, in some countries they have no in-country neurologists, and that's extraordinary In 2025,

Sam Pauly (07:32):

Perhaps we could talk a little bit about the work of encephalitis International as well, Ava, because recently encephalitis International helped bring a new WHO technical brief to life. First of all, could you tell us a little bit more about what a technical brief is perhaps for anyone that doesn't know very briefly, but a little bit more about how this came about and why it's so significant?

Dr Ava Easton (07:54):

Yeah, we did. It was a real career highlight I have to say, and a technical brief to answer your first question is very much a policy document, something that countries and health planners and policy leaders and people in public health can look at to understand what needs to change in their country and around the world. But the story goes right back to 2020 when we delivered a petition to the World Health Organization signed by people from 128 countries along with a short report explaining why encephalitis matters. But behind the scenes, we were working on a baseline situation and gap analysis for short, we call it our global report, but that was looking at everything that we knew about encephalitis around the world from surveillance through to treatment, through to prevention. We followed up by presenting this to the World Health Organization in 2021. I was absolutely thrilled when we heard back from them to say that they would like more conversations.

(08:56):

They then held a two day stakeholder meeting in June, 2022, and they published a report called Why Encephalitis Matters, and that was a real wow moment for us. We'd been saying for decades that encephalitis matters, but this was the first time that the World Health Organization had said encephalitis matters, and I'm actually getting goosebumps as I'm talking to you at the moment about it because it really is exciting. So that was a real seminal moment. That report was published coincide with Weld Encephalitis Day in 2023, and then we agreed to fund a technical brief written by the World Health Organization, and this was published this year in February, and it's a really rich document.

Sam Pauly (09:36):

Could you maybe highlight some of the key points from that document and who it's aimed at? In a broad sense,

Dr Ava Easton (09:41):

It's aimed at policymakers, health program managers and planners, healthcare providers, people who are involved in public health, but also researchers, and it's going to support what the WHO call their I gap, which is their intersectoral global action plan on epilepsy and other neurological disorders. So it's got a variety of different sections on surveillance, treatment and care diagnosis, prevention, research and innovation and so on. It makes some really bold and important statements that encephalitis is a growing global threat with infectious encephalitis being an increasing public health concern and an urgent public health imperative. So it really makes some bold statements that means that people, hopefully we'll read this document, we'll listen, it reminds us of a lot of things. The importance as we know about speedy diagnosis and treatment. That's what's really going to stop people dying of this condition and having these profound disabilities afterwards. But it also reminds us, again, of how disproportionately affected people in low to middle income countries are. It advocates a lot around stigma for people that have been affected and also the importance of rehabilitation and long-term community support for them. So it is, as I say, it's this really rich document which people, they can have a read of it on our website or on the WHO websites.

Sam Pauly (11:06):

And you said as well, Ava, that it's supporting the I Gap as well for other neurological disorders that maybe would like to try and do the same thing and work together with WHO. Do you have any sort of key takeaways about the process or advice that you could pass on to them?

Dr Ava Easton (11:21):

Oh, that's a really interesting question. I talked earlier about this global report that we put together. I was told, you can't do it, it can't be done. And I felt it could and we did it and here we are now. So I would say be bold, be confident, be bold. Did I think a few years ago that I'd be sat here having conversations with the World Health Organization with this incredible document? No, I didn't. And it's absolutely fantastic, and that's going to mean lots of things for encephalitis international. We're putting together an international strategy now based on some of the key action points in the brief. So I would say be bold. That would be my advice, be bold, reach out and have conversations.

Sam Pauly (12:10):

What kind of work, perhaps you could just outline some of the work that's already been done globally or locally to improve life for people affected by encephalitis. Are there any standout approaches or partnerships other than the WHO partnership that you've just mentioned that you'd like to highlight and that leave you feeling hopeful for the future?

Dr Ava Easton (12:27):

I do feel hopeful. I've been working in this condition for 25 years now, and back in those days right back when I started, there was virtually nothing around this condition at all. Very little literature, almost no research going on at all, and I'm pleased to say that 25 years later, we're in a very different place. We're just writing our international strategy, which is going to be based on not only our own global report, but the WHO technical brief. We provide seed funds every year to kick off much needed research efforts. This year we're offering seed funding to researchers in Central and South America, and that's going to be kickstarting some of the areas and actions that we've identified where we're also part of a great study called Brain Infections Global, which operated out of the University of Liverpool where we looked at improving diagnostics on encephalitis in low to middle income countries, and we were working in Brazil, Malawi, and India. And that project has resulted in online tools and interventions that people can download no matter where they are in the world to help improve diagnosis and treatment in their hospitals. We've got new guidelines coming out on both infectious and autoimmune causes to help with diagnosis and treatment. So I think that there are many initiatives and I think we're really driving change that will alter permanently the landscape of encephalitis around the world. It's very exciting.

Sam Pauly (13:57):

Before we finish ava, something we haven't spoken about yet is carers. We've spoken about the impact on people who have encephalitis, but we haven't spoken about the impact on carers and they often play a central role in recovery and long-term support. What's the reality like for them and what more could be done to support carers of those who are affected by encephalitis?

Dr Ava Easton (14:18):

I think that's such an important question. Often a very overlooked area. I think it's very difficult for carers no matter where they are in the world because people can be so profoundly affected by this condition. It can result in all sorts of things. We do talk about carer stress and carer burden, and I don't think we should underestimate the impact of that, but we've also got to remember that there's economical financial impact. People often lose a salary, if not both salaries. If you are left with a very disabled relative, then sometimes that means that you have to give up work as well. And the impacts for people who are in low to middle income countries can be even more devastating. Quite often people affected might be living in rural areas. It's even more difficult access, rehabilitation and healthcare services. So I think people can be affected in a range of ways, and I think it's an area and under supported in terms of care burden.

Sam Pauly (15:19):

And finally, as we finish off, perhaps maybe you could highlight one thing. I'm sure there were many, but if there was just one thing you wish more people or more policymakers understood about life after encephalitis, what would that be?

Dr Ava Easton (15:33):

I wish people knew about encephalitis in the same way that they know what meningitis and sepsis are, but also I think just because someone looks okay, it doesn't mean that they're not fighting a range of disabilities because their brain got broken. And I wish people understood that People think of disability as a physical thing and as we know through mental health and in this case neurological condition, it isn't. You can't always see broken brains.

Sam Pauly (16:02):

Ava, you spoke about the tremendous progress that you've seen and that you've been contributing to in your 25 years with encephalitis. If we were to come back in a decade, say and have the same conversation again, where do you think we might be? Where would you like to be?

Dr Ava Easton (16:21):

Oh, that's an interesting question. I would like people to be more familiar with the condition. I think that there will be a lot more research at encephalitis International. Our primary mission is saving lives and where we can't save lives, we help people to rebuild them. In 10 years, I'd like to think that there was less people dying of this condition. Many causes, as we mentioned, are preventable, and if we can stop this disease, this condition happening, then that absolutely has to be our gold standard. So I think we will see less death and disability, but it's going to be a long journey and encephalitis is never going to go away.

Sam Pauly (17:04):

Well, Ava, thank you so much for joining us. It's been tremendous to hear about the great progress that's being made and the work that encephalitis International has been doing and contributing to that progress. So thank you so much for joining us.

Dr Ava Easton (17:16):

Thank you so much for having us on the show.

Sam Pauly (17:20):

Well, up next and to build on what we've been hearing from Ava and what she's been sharing, let's hear from Suber who is living with encephalitis and offers a personal insight into her journey and day-to-day reality.

Subha (17:37):

Hello all. I'm Suba 39 years old from Bangalore, India, a mother of two and an IT manager by profession. August, 2023. I did not know what life had for me. Since two months, I felt myself weird with blurry vision, memory issues, and cloudy brain waking up at the hospital. I had no memory of what happened since three weeks that I was there at the hospital, I had doubts about everything around nurses, doctors, as well as the treatment. My neurologist held my hands, looked into my eyes and asked me, what's happening within you? Are you scared? For the first time, I felt I could trust someone. He said My brain is inflamed, and my own immune system was attacking my brain rapidly. I was diagnosed with autoimmune encephalitis, Casper. Two, my treatment was accelerated. I had fading memories. Seizures could not perform faster like how I usually was, and I was feeling tired more often.

(18:34):

I was not able to find what is real and unreal because of the hallucinations and dissociative spells that I had. I could not differentiate left and right. I wrote in mirrored language. This disorientation led to inability to drive anymore travel alone anymore. I've had two relapses until now and I'm not able to predict my future. In my job as a manager, I cannot afford to have calculation errors, logical perspectives, and memory issues, and this uncertainty causes fear and doubt. Although I'm seen efficient in my job, my daughter went into depression with the fear of losing her mom. My parents are still worried about me. However, the only way to Coco is accepting the uncertainty. My biggest support were people around me. My boss never judged me, although the person I was had changed my neurologist, identified the disease early, explained the complexity of the brain, and made me come into acceptance. He's a great human too. Thanks to the encephalitis International for spreading awareness, I got highly benefited with their online forums and the support group. The path may be uncertain, but there is light. There is hope. Let's keep smiling.

Sam Pauly (19:47):

Thank you Suber for that powerful reminder of the challenges faced, but also the determination that she has to live as full a life as possible whilst adapting to what has become her new normal. Now, in the first half of the episode, we focused on encephalitis, the impact that that has on those living with the disorder and some of the huge progress that has been made. And in a moment we'll be hearing more about palliative care and the role and benefit that it can play and bring and not just at end of life. First though, we're going to hear from a carer of someone living with a neurological disorder on the impact on them and their loved one and family, and also the impact and benefit that palliative care has provided them with.

Tracey (20:44):

Hi, my name is Tracy. My husband Nick was with Motor neuron Disease December, 2023 at the age of 60. He had been unwell for approximately a year, but his main symptom was that his breathing and strength were deteriorating. He had always been employed in active roles. Crane driver, part-time firefighter and laterally in heavy construction in December of 23 had got to the point that he could no longer work. He was diagnosed with motor neuron disease during a hospital admission with his breathing being the main symptom. We understand that only 2% of patients with motor neuron disease present like this. He was immediately given a non-invasive breathing machine to manage his breathing. Initially, he only used this at night, but has become more dependent on it in the past year. His walking and strength are also gradually deteriorating, and he now uses wheelchair or walker. This has impacted significantly on where we can go and for how long.

(21:37):

The doctors were unable to give him a prognosis at his presentation was rare and prognosis varies significantly. Motor neuron disease patients, this uncertainty was devastating for us all as a family. Nick was immediately referred to our local hospice team as they have a motor neuron disease coordinator there funded by the MNDA association. Initially, Nick was resistant to early referral to the hospice team as he only saw their role as end of life care. I was previously a specialist nurse. So we discussed this and he came to understand that the hospice role was to keep people well and support them for as long as possible, so he agreed to the referral. This referral has been invaluable and both Nick as patient and myself as his carer feel well supported by the hospice team and the Motor Neuron Disease Association who have helped us both practically financially and emotionally. We have attended a motor neuron disease group at the hospice fortnightly, and this has allowed us to become familiar with the hospice building, the wards, the staff, and also introduced us to the families locally with Motor Motor Neuron disease. Without the support we get from them, we could feel very isolated. We know things will change within its condition in the future, but we don't know how, but we know we are supported and would encourage others to seek this support locally from their hospice teams.

Sam Pauly (22:59):

Many thanks to Tracy for sharing her and Nick's story and highlighting how misconceptions about palliative care being only for end of life can potentially be a barrier when it can be a valuable source of support. Well, to explore this further, we now welcome Professor David Oliver to talk about best practice in palliative care, what that really means, the role it can play and how it can be improved around the world. David, thank you so much for being with us today.

Professor David Oliver (23:27):

Thank you for inviting me. Pleasure to be here.

Sam Pauly (23:30):

Well, as I alluded to just a moment ago, palliative care can often be misunderstood. Can you explain what it really means, particularly in the context of neurological disorders?

Professor David Oliver (23:41):

Palliative care aims to help improve quality of life and help people in a holistic way, not looking just at the physical aspects, but at psychological aspects, social aspects and spiritual or existential aspects of life. So it's much wider than just general care, but in many ways, all healthcare professionals will be providing palliative care if they're listening to the people that they're talking to, they're helping them set their goals and their aims in the care and making sure that their symptoms and any issues that may arise are well controlled.

Sam Pauly (24:18):

I think often we consider palliative care to be very much end of life care. Is that the case?

Professor David Oliver (24:24):

Palliative care is often seen as end of life care, but it's much wider than that. And there are now many studies and research projects that show that having palliative care earlier in the diagnosis, it may improve quality of life and extend life. So palliative care should be according to someone's need, whether they have problems rather than it's only for their last few days, weeks, or months of life.

Sam Pauly (24:53):

One neurology has published a position paper. Could you tell us a little bit more about the position paper? What prompted the development of it and was there a particular gap or concern that brought the one neurology partnership together on this?

Professor David Oliver (25:05):

Again, we were very aware that people misunderstood what palliative care was, and that's not just the general public, but professionals as well. And so we wanted to say that palliative care was appropriate from earlier on in the diagnosis, particularly for progressive diseases that it could be provided anywhere, could be at home, could be at a hospital, it might be in a hospice or a palliative care institution, or it could be in a nursing home. And it very much involves a much wider multidisciplinary approach. So there are doctors and nurses, but it would involve physiotherapists, occupational therapists, speech therapists, dieticians, psychologists, or social workers and counselors. And there could be over a whole period of someone's journey with a neurological disease at variable times, they will perhaps have particular needs. And not only the person but also the family. We know that the vast majority of people with neurological diseases are part of wider families and caring systems, and they need the support as well. But we also wanted to say that palliative care wasn't certain things. We wanted to emphasize again, that it isn't only when someone is in the last few days or weeks of life, it isn't only in a hospice facility, it could be at home, and it isn't the same as euthanasia or assisted dying, that their aim for palliative care is to control symptoms and to help someone in their life and to die peacefully. But the aim is not to end their life.

Sam Pauly (26:44):

And we'll pick up on some of those points you've made, David in a minute. But first maybe just to stick with the paper, what was the key aim of the statement and what do you hope it's going to do to shift or change practice policy or perception globally?

Professor David Oliver (26:57):

We very much wanted to show what palliative care was and help a discussion across the world about what palliative care was and its role particularly for neurological patients. In the past, often cancer patients have received palliative care and people with neurological diseases haven't. And there's more evidence, there's more involvement across the world for people with neurological disease. And so we wanted to emphasize that and help people start a discussion about where palliative care could be developed.

Sam Pauly (27:34):

You mentioned just a moment ago that there's been typically an association with palliative care, mainly with cancer. Why do you think that tendency has been there and what's at stake when it's not integrated earlier or more broadly in neurology?

Professor David Oliver (27:47):

Interestingly, when St. Christopher's hospice was opened in 1967, the first of the modern hospices, patients with neurological diseases were admitted in the same way as cancer patients. So it isn't something new, it's just that cancers tended to be over-emphasized within palliative care. And I think we know that patients often with cancer may have very distressing symptoms of pain and other issues, but I think over the years we've been aware that neurology patients also have many needs which could respond to the help from palliative care.

Sam Pauly (28:25):

And of course, when we speak about cancer or other diseases, you are not calling for that to be reduced at all. You're just asking for neurology to be more prioritized.

Professor David Oliver (28:36):

We know that in all the world, there is a need for increasing awareness and development of palliative care services. And I would also emphasize that just every healthcare professional has more education in palliative care. We know that in some countries and even in Europe, there is very limited education on palliative care and the management of symptoms and all healthcare professionals and in social care need to be more aware of the role of palliative care and how it can help people of maintain quality of life

Sam Pauly (29:12):

Quality. Do you think it's a difficult thing to talk about?

Professor David Oliver (29:15):

I think we may consider them to be difficult. I know usually when I'm talking with people with neurological disease, if we're open to them, they would like to talk about the issues of what's going to happen, how they are going to be, how they're going to cope as their disease deteriorates, how are they going to be managed at home, how are their family going to be? So usually they are open to that, but it's allowing that to take place.

Sam Pauly (29:43):

Let's have a quick chat a bit more about some of the points that you've already raised from the position statement. You mentioned the families and the carers, as you said, they often carry a huge burden in neurological conditions, the family of people who are living with those disorders. What role do the families play in this palliative care journey and how can we better support them?

Professor David Oliver (30:04):

I think it's listening to families together with the person with a neurological disease to see what issues they have, what they would like to know, what help they need, what support they need, and enabling them to help care for the person. Often they want to help to care for the person maybe at home or in another nursing home or care home if things have become more difficult. But they want to be involved, so they want to know the information about the disease, about what can be provided and be listened to. And they may have their specific needs, which we need to hear and to help them with. So it may be a family worker or a social worker may be able to help them with their particular needs, whether that's a physical, helping the person, financial issues of that they've had to give up work to look after someone or just their emotional reactions to all that is going on,

Sam Pauly (31:03):

Which is quite, again, a holistic approach. And you've talked about that already, but I want to talk a little bit more about this multidisciplinary approach because the paper very much talks about palliative care being more than just medical as you've already mentioned. Could you tell us a little bit more about what that looks like and who could be involved? Who could that team be comprised of?

Professor David Oliver (31:22):

I think the basic team would always be probably a doctor, a nurse, and someone to help with those psychological issues. And that varies according to countries. It may be a psychologist in some countries, a social worker or a counselor, but there's a wider issues of care, whether that's with physiotherapy and occupational therapy for specific issues about movement and care with speech and language therapy and dieticians, if there's issues about speech and swallowing and maybe wider, it could include the chaplain or religious leader for some people, although I think many times the fears can be heard and listened to and helped by any members of the team. And I think the crucial thing is that team meets regularly together so that they can support the person. And perhaps if the physiotherapist has been to say someone and notices their speech is more difficult, they can mention that to a speech therapist who's in the team, or they can mention it to the doctor for when they come for their next appointment. So it's a working together, that's the ideal. And I know that's not going to be available and possible across the world, but if we can start encouraging people to work together as a team, it can actually really improve people's care. For instance, in atrophic lateral sclerosis, motor neuron disease, there is some evidence that a multidisciplinary approach actually improves quality, but also length of life. So it's a very powerful way of helping people.

Sam Pauly (33:00):

And you mentioned that we don't need to be talking just about hospices here, either. The palliative care can take place in a number of different environments.

Professor David Oliver (33:08):

Very much so. When I was working in a palliative care doctor in the uk, the vast majority of the people with neurological diseases were at home. Our aim is to provide that care wherever people are and to enable them to be where they want to be if that's possible. And I think that's one of the complications across the world that palliative care and hospice may mean slightly different things in different countries. In Europe or hospice is often a palliative care unit where people may come into the unit for a period of care to sort out a particular problem, then return home. Whereas in the USA hospice is a concept of very much end of life care, which may be in a unit or it may be at home. I think we need to encourage people to think of helping people where they are an every day rather than it being a specialist service for the vast majority of people.

Sam Pauly (34:03):

You started touching on some of the barriers globally to making palliative care available for people living with neurological disorders. Do these barriers vary significantly across countries or regions and what are some of the biggest barriers?

Professor David Oliver (34:17):

One barrier is the availability of staff, of people to provide that care. That varies greatly across the world. Even neurological care is very limited in many parts of the world, let alone palliative care as well. When we've done studies across Europe, we've found that there often is a reluctance of neurologists to refer people to palliative care, and there may be a reluctance of some palliative care providers to be involved with neurological patients because they're unsure. It's something they haven't been involved with and they need more education and more training to be able to cope with the new issues that they haven't faced before. So I think there are many barriers that we need to look at, but the biggest one probably is the attitudinal, trying to get people to realize that palliative care isn't just for the last few days or weeks, but wider according to the person's need. And that's a barrier in all countries.

Sam Pauly (35:15):

And of course with neurology, with so many different neurological conditions, are the needs and challenges different and are there some commonalities?

Professor David Oliver (35:24):

I think there are very many commonalities, but there are big differences with the progressive diseases like atrophic lateral sclerosis or Parkinson's disease or dementia. We know there is going to be a progressive deterioration, and so we can start making preparations for that. But with other diseases, particularly thinking of something like multiple sclerosis where the new treatments may alter the prognosis dramatically, but there may still be some symptoms and issues that need to be helped. Even if we think of epilepsy, there are the problems, particularly for families. Perhaps if someone has died very suddenly and the support of that family and perhaps enabling people to talk about that sudden death might occur may be very helpful so that they're prepared.

Sam Pauly (36:17):

And is there a case or is there already in place support for families if there is a sudden death after that

Professor David Oliver (36:25):

Period? I think again, it may vary very greatly, and I don't think we always think about what may happen afterwards. And palliative care should be involved through the debridement because quite often with someone with a progressive disease, the carers feel very, very alone and very unsure what the future holds after a death of a person who perhaps they've been looking after very, very intensively over many months or years. So there is a need to provide that extra support in bereavement as well.

Sam Pauly (37:00):

What do you think David needs to happen at the policy system or even education level to ensure that palliative care becomes a core part of the neurology pathway?

Professor David Oliver (37:11):

We do have an opportunity over the coming years because the World Health Organization has issued its intersectoral Global Action Plan on neurological disorders and epilepsy. This intends to encourage national governments, local governments, hospitals, communities to look at what is provided for neurological patients and palliative care is included within that plan. There is an I GAP toolkit, which everyone can fill in to monitor where they are now and to make plans for the future. So I think that's an opportunity to improve neurological care, but palliative care is very much included within the I Gap plans.

Sam Pauly (37:55):

And just to finish, David, when we talk about palliative care being done well, what kind of positive impact can that have? Maybe you can share an insight or an example on that and what gives you hope?

Professor David Oliver (38:08):

I think when we can provide the care and someone can see that their quality of life is good and that they're able to interact with their family to do the things they want to, I always think of one lady who went to a holiday camp with her family. She had a LS. She was in a wheelchair with a feeding tube and a communication aid. She couldn't speak, but her daughter took her into the nightclub at the holiday camp when she was pretty ill. But she could communicate very well with the communication aid in the nightclub. She was nearly the only person who could communicate in the noise of the nightclub. She found that if your daughter pushed you round in a wheelchair on the dance floor, no one minded, but everyone wanted to join in. And she found that a gin and tonic went down a feeding tube very well, and two went down even better.

(39:06):

And if you felt a bit dizzy, you were in a wheelchair. So it didn't matter. She died a few weeks after that. And I think the aim was to say she couldn't speak, but she could still communicate. She couldn't swallow, but she could still enjoy food and drink. She couldn't move around by herself, but she was still mobile and able to enjoy things. And I think that's our aim in palliative care, to enable people to do the things they want to do, the things that make their quality of life. And I think there is a lot that can be done and a big challenge for neurology services, for palliative care services, and for communities across the world to really look at how we improve quality of life.

Sam Pauly (39:55):

David, it's been such a privilege to talk with you on this subject. So thank you so much and thank you for the work that you've done with the position paper, and I very much hope that we begin to see more improvements in this area. Thanks for joining us.

Professor David Oliver (40:07):

Thank you very much indeed.

Sam Pauly (40:09):

Well, that brings us to the end of this episode of the One Voice for Neurology Podcast. Do follow us on social media to stay up to date. You'll find us on LinkedIn and also on X with the handle at one neurology. And you can also explore more from the One Neurology partnership@oneurology.net. Thanks for listening. And do join us again soon as we continue to speak with one voice for better brain health for all.