Bonuscast: What's changed with epilepsy in the last 70 years?

1:48PM Mar 2, 2021

Speakers:

Hattie

Rich

Intro - Hattie

Philip

Audio from 1957 video

Man 1 - on video

Woman 1 - on video

Man 2 - on video

Man 3 - on video

Man 4 - on video

Man 5 - on video

Speaker 1 - clip

Speaker 2 - clip

Speaker 3 - clip

Speaker 4 - clip

Keywords:

epilepsy

people

organisation

hattie

important

drive

life

report

action

absolutely

years

condition

relation

disability

listening

future

change

discriminated

attitudes

charity

Welcome to epilepsycast, the podcast about all things epilepsy from Epilepsy Action.

Hi. So welcome everybody to a very special edition of epilepsycast. This is our bonuscast - we said at the last episode that it was the end of Series One. So here we are, we are doing a bonuscast for a very special reason. And that is that Epilepsy Action, the organisation for which we work has turned 70, it turned 70 at the beginning of September. And so we're here to look back at how life for people with epilepsy in the UK has changed over the past 70 years. And how Epilepsy Action or British Epilepsy Association (we'll get into that) has made, played a part in that and what we think needs to happen and what will happen in the future. So I'm here with Rich as usual.

Hey, how's it going?

And also with our chief executive of Epilepsy Action, Phillip Lee.

Hi Hattie, hi Rich.

We're just talking about holidays, we love a good holiday over here. But obviously, we're here to talk about more pressing things. And I think what we're going to do first, Phil, if that's right for you, we're going to play you a little video that we have from the Epilepsy Action vault. And it's people from 1957, talking about how life with epilepsy was back then. I just want to kind of get your reactions on it and see how things have changed.

Ok.

(Voiceover alongside image of man putting a jigsaw together) One person in every 200 has an epilepsy of some kind or another. To reassemble their lives, to put the pieces together again, to make a go of living, needs understanding.

And I told him, I had fits. They thought that I go round bashing up everyone.

If you're big, they think you're strong enough to take more drugs, well they just pump more drugs into you because they know that they'll cure you of the fits. But they're not worried so much about the physical disability.

In fact, I tried 20 hospitals before I got one to take me for my training. And I used to have to keep a file, so I didn't apply to the same one twice.

One does begin to find that one's social life diminishes, because not so much that your friends are bothered about it, although of course, some of them are, but you feel yourself that you're going to embarrass somebody if you go around and might upset the party.

I wouldn't like to get married and make my boy or girl be born with fits.

It wasn't fair to get married. I didn't think it was fair to the woman or any girl to marry me under those circumstances.

And also the fact that there's so many people helping and wanting to help you. But at the same time they help too much.

My mother is the main trouble. I think she she never stops worrying.

So I think from that video, there's there's so many little things that either have kind of got even better, or they kind of still prevail, I think, today, I think one of the, the words that have been particular that they use as in 'fits' I think we as an organisation, I think a lot of people with epilepsy don't like that term, or it kind of has a lot of negative connotations. And I think we prefer seizure at this point, don't we? And then I think the guy talking about just doctors thinking you're going to go around bashing people and stuff like that. It's just so kind of like bizarre and kind of one-dimensional. Almost.

Yeah, it's interesting. I think you're right. It's interesting how much of what you hear there from such a long time ago, still resonates actually, the precise things that people talk about are maybe slightly different. But an awful lot of what people were talking about then, I think for many people with epilepsy still today, it still applies. It's obviously updated into a more modern world, but a lot of the issues that seem to be there in relation to things like the quality of healthcare that's available to people, other people's attitudes towards them, including their own families, their own sense of self worth and identity. I think those are still issues which a lot of people with epilepsy struggle with that they can still find difficult to deal with. So in some ways, things have moved on, I'm sure, but equally a lot of the issues, whether they're social issues or healthcare issues, they still seem to be prevalent.

Absolutely. But yes, you know, I know... And I wonder if we could paint a picture for for our listeners about what the world was like for people with epilepsy back in 1957. Or, you know, 1950 when the British Epilepsy Association was set up, and I know that for instance, a lot of people with epilepsy would live in colonies, they wouldn't live in the community, that it was, the stigma of the condition was just huge and I wondered if that was something? Yeah, it was just a very different picture that they lived in.

Yeah, you're right, Hattie, things have changed, obviously so, and thankfully so. Things are a lot better now than they were 70-odd years ago. And one of the reasons that this organisation, British Epilepsy Association, now Epilepsy Action, one of the reasons it was formed was because things were so difficult, were so bad for people with epilepsy. And I think really importantly, it was people with epilepsy themselves that actually took that view and were instrumental in setting up the charity. And I think that's something which has stayed with us right the way throughout our history. And it's a really important part of our personality, as an organisation, about our view of things, that it's about people with epilepsy, taking control for themselves, and looking to make a better life for themselves. And we try and reflect that to everything that we do in today.

Definitely, and that's one of the things that I can see, from you know, as an employee now, but also looking back, the kind of the voice of people with epilepsy is like a thread running through all that we've done. And there are some great things that we've done as an organisation to change the world from that time in, in the 1950s, that we've just that we've just seen, like where people were perhaps saying that they didn't feel that they could get married or that we know that they were perhaps not able to live where they wanted to. And one of the things that we're going to kind of look at some of those key things. Now, one of the things was that in 1963, we were part of a key report called The Adult Population of Epileptic Colonies was its title, and which was kind of one of the key things that spoke out that perhaps that wasn't the best way to do things.

Yeah, you're right, that that report was really a milestone, I think in the history of epilepsy, you might say, certainly, recent history in the UK. It actually came from a government report from the late 1950s, called the Cohen Report, which was an investigation into the condition of people with epilepsy in the UK. And as a consequence of that report, which identified that there were a number of significant problems, not least the numbers of people with epilepsy, in epileptic colonies and asylums, it came to the conclusion that more needed to be investigated, more needed to be done. And as a consequence of that, we commissioned some work, which resulted in the publication of this report into the adult population of epileptic colonies. And that, in turn, ultimately led to really a very different approach and a different set of thinking in relation to how people with epilepsy should be treated. And this all happened at the same time, moving in towards the sort of the 1960s and late 60s, the idea of more healthcare in the community, as opposed to institutional care. And as a consequence, Epilepsy Action was really quite instrumental, I think, in establishing the principle that people with epilepsy should, wherever possible, live in their own communities, try and be given every opportunity to live normal, ordinary lives like everybody else. And and in that sense, you know, you can track back to the publication of that report and say, that was the, that was a turning point.

Absolutely. And as you mentioned, the late 60s there - I know one thing as we go from past to present, one thing that people with epilepsy always find very frustrating is, you know, losing that independence and ability to drive. And I know from one of our past podcasts, actually, one of the things that stuck with me is Ibby said that we did it, we did an interview with a lady called Ibby and she said that, the last time that she kind of drove a car, she was just sat there, and like she just slowly pull the keys out and thought 'this is the last time I'm gonna be able to drive for a while'. And that kind of stayed with me because I didn't really think about it so much like that. But looking at one of our milestones in 1968, it was a factor that people with epilepsy couldn't drive at all. But we seem to be a part of a change where if you didn't have a seizure for three years, you could drive in 1968. And that's changed even further now.

No,you're absolutely right, Rich. It's driving, you know, it's taken for granted by by people who can apply for licences, pass the driving test and drive. You take it for granted when you can do that without restriction. But for people with epilepsy, that is a really significant issue. Having the opportunity to be able to drive with all of that, all that that entails in terms of the opportunities it presents for you. And I think it's particularly true for younger people as well. You know, you go through those, that period of time in your sort of late teens and early 20s, when all of your peers are going through that process of learning to drive, and if you're not able to do that, because of epilepsy, that's a real downer, frankly.

100%.

It's really, really not good. And it just reminds you, if you need reminding, what a limitation epilepsy can be in your life. So it's really important for people to kind of get over that and to accept that in many respects. But from our point of view, as an organisation, we have worked over the decades really, to see improvements to driving licence regulation, so that it's fair. You know, we're not suggesting that all people with epilepsy and all types of epilepsy, particularly if their seizures are not controlled that everyone should be able to drive. But we do think that the regulations over time, have improved significantly, from a time when you couldn't drive atll all, you couldn't hold a licence to now it's a much more sensible approach. It's a much more individual approach, which is the really key thing, you know, that people are seen as individuals and as people rather than as a health condition, you know. And in the past, I think all the regulations certainly for driving were really focused on if you have epilepsy, then you can't drive, it's as pretty simple as that. And I think now we're in a much better place in terms of individual assessments, what type of epilepsy you have, how it affects you, and so on and so forth. So I think the regulations we have now are a lot fairer, and a lot more sensible.

Definitely. Definitely. And then another place I know where to people with epilepsy are at the heart of Epilepsy Action and driving is one of the places where we've really been able to speak as, speak on behalf of people with epilepsy. And another place I know where that was really crucial and, and life-changing for so many was in the Disability Discrimination Act. And it still shocks me that before that piece of law 25 years ago, you you could be openly discriminated against on the basis of having epilepsy or any other disability with no legal consequences, that was that. Well, there wasn't you could that could happen that that Well, that wasn't something that was illegal. And, um, and yeah, I know that. And one of the things I'm proudest about when I read about Epilepsy Action's history was that we were the organisation who really pushed for epilepsy to be included as a disability so that it would be covered by that, by that law that's just so protective to people.

Yeah, you're absolutely right, Hattie, that was a really important piece of work that the charity was involved in. And I'm actually rather proud to say I was involved in that myself personally. And it really was a big step forward, the whole disability...

We've come into the Phil years!

I'm afraid we have! I'm afraid they go back rather a long way as well. But yeah, I mean, up until that point, you know, you're quite right. People with epilepsy experienced really outrageous discrimination prejudice. And you mentioned the word stigma earlier on, I think Hattie, and that's really a great example of where it occurred in areas like employment, in areas like accommodation. Just generally public attitudes towards people with so it was so poor in relation to epilepsy. And what the Disability Discrimination Act did was it criminalised, if you like, it made it illegal for people to be discriminated against because they had epilepsy. And as you again, rightly say, one of the important things that that we did was to make sure that epilepsy was specifically mentioned within the legislation, as a disability. And so for the first time, it was legally defined as a disability as well as people with epilepsy being protected by that law against discrimination. And that's now obviously morphed into the Equality Act in 2010. But the principles are still there, and the protections are still there. And, you know, for the past 25 years or so, I'm pleased to say that, that protection has been available to people with epilepsy, and there has been, you know, numerous instances where people have fallen back on the law and used it, where they have been discriminated against because of their epilepsy. So there's now good case law established, as well as the statute. There's good case law now which which exists to protect people.

Well as we move further into the Phil years, and we move into the Rich years here in 2017, we also launched a campaign on PIP, which are Personal Independence Payments, we know a lot of people have epilepsy, they can't work so do rely on, you know, government benefits and support just as a way to put food on the table. Otherwise, you know, there's literally no other option sometimes. And we identified as an organisation that the PIP process wasn't, shall we say smooth, or kind of took into account a lot of things that people with epilepsy do go through, because epilepsy is such a varied condition. And it can be so different from day to day and never mind minute to minute. And, you know, we highlighted those problems, got in touch with a lot of MPs - I was part of the social campaign that we ran. And it was a success, we managed to get the assessment process changed. And we're going to take into account a lot of the different experiences that people with epilepsy do have.

It's a really good example, again, because it's, funnily enough, it's not dissimilar to the other ones we've already talked about. And it's that issue where, where people see the condition, they see epilepsy rather than the person. And now our issues in relation to DWP and Personal Independence Payments in the way they were being assessed for people with epilepsy was that people were not being seen as individuals, they weren't being assessed as people. They were being assessed as a condition. And that's bad enough. But the people doing the assessments didn't know what the condition was about either. So it was kind of a double whammy, really, you know, and we had so many reports from people of unfair treatment, inappropriate assessments being made by people who clearly didn't understand what they were doing, with greatest respect to them. So in many ways, the campaign to challenge that was a bit of a no-brainer, it was really something we had to do. And there was huge evidence available to us. Of course, we have to go out and get it and find people who are prepared to stand up and talk about their experience. But you're right, we had a really successful campaign with that. We brought it to the relevant, to the attention of the relevant people, the Department for Work and Pensions. And I'm pleased to say that they did listen, and that they have made changes. It's still not perfect, I have to say, we are continuing to monitor it, we are continuing to hear about people's difficulties. But the important thing is that we're on it, we know what we're looking at, we know what needs to be done, we continue to push and press the government to improve the system and to make it fair, at the end of the day. Because that's all we're talking about, we just want things to be fair for people.

And that for me, that was in my era as well at Epilepsy Action. For me, I've never been prouder of people with epilepsy than when we were working on that campaign, because of the amount of people who were willing to take a stand, and who were willing to share their story and who were willing to be so brave, and talk about their experiences and their vulnerabilities as well, why they needed why they needed Personal Independence Payment. And it's not always an easy thing to talk about. And so it was just incredible to see that kind of swell of people coming together to be so brave and to make that change.

Yeah, I think you know, it's a really interesting contrast when you go back to that 1957 film, and you hear the voices of the people at that time, and their tone and their approach to things. And you contrast that to where we are now and the way that people with epilepsy are now seemingly at least more prepared to stand up and talk about their experiences and put themselves forward. Whereas I think back in 1957, people were not quite so prepared to do that, for good reasons, I have to say. They were certainly fearful of being discriminated against, and stigmatised. I think some people still have that concern. You know, we talk about things like disclosing your epilepsy to employers - a lot of people are reluctant to do that, because they fear that will count against them. So that still exists. But I think generally speaking, more people now with epilepsy are more prepared to stand up and feel comfortable about talking about their condition. And the more that happens, the quicker and the sooner we're going to be able to change these particular public attitudes and the people with epilepsy, really, are the best advocates for themselves in that sense.

Absolutely. And that's what this podcast is all about. Pretty much we know, we know that people with epilepsy have such great stories to tell and powerful stories. And yeah, as you say, the biggest advocates are you guys, so always come to us with your stories.

Absolutely, right. Yeah, absolutely right.

And they can create real change. You know, we've spoken about lots of lots of things over the past 70 years where the stories of people with epilepsy and people with epilepsy themselves have created real change. So that, you know, discrimination isn't something that people worry about as much anymore. And that people are able to drive in some circumstances that, that people are able to live in their own homes and be treated and have that opportunity to live independently.

Yeah, you're right. Hattie. It's also a case I think with things like this with particularly big issues. They don't happen overnight. It takes quite a long time. The Disability Discrimination Action, for example, we worked for about five or six years on that before we got that sorted out. And at the time, there were times when we felt we weren't getting anywhere, to be honest. But it does, it does take time. And when you look back and reflect, and you can see those really sort of significant moments when something happens, when something changes. And the same with the PIP campaign, when the regulations were changed for that, and the assessments were changed for that, it took a lot of time and a lot of effort to get to that place. But we get there eventually, you know, that's the important thing. And really importantly, as you both have said, you know, it's people with epilepsy doing it for themselves, I think, is the really key thing. And that's the most powerful part of this now. And it actually accelerates things too, you know, it's the best evidence that we can present to to decision makers and policy makers is when they hear the stories of people with epilepsy themselves telling it the way it really is. You can't refute that, you can't rebut that. It's absolutely diamond stuff, it's great stuff. And really powerful.

And talking about things not changing overnight. Earlier this year, things did change overnight, when...

We flipped it. I like the way you flipped it there.

Thanks.

What could you, what could you be thinking of?

What could I be thinking of?! And so yeah, 2020 has probably been a unique year for pretty much everybody in the UK. And it's certainly been a unique year in the history of, of Epilepsy Action. And yeah, I just wondered if you could chat, Phil, about how, what we've had to do, how we've worked and what, what has changed and what hasn't changed?

Yeah, well, it's um, it's been an extraordinary year, hasn't it? I mean, in so many different ways. But from Epilepsy Action's point of view, I think the first thing I'd want to say is just thank you. Really, first of all, thank you to the absolutely amazing people who work for Epilepsy Action, who've done some incredible things over the last few months, as a consequence of the COVID-19 pandemic. We've had to change so many things in so many different ways in order to keep the organisation functioning, to continue to provide the services that are so important for so many people. So the staff have been outstanding, I have to say, absolutely brilliant. Similarly, all of our volunteers who rallied round, and our brilliant members and all of our supporters who have dug deep to help us out at a really critical time. Because of course, like every other charity, we've seen, we've seen an impact on our income, we're going to see probably about a shortfall in our expected income for this year of about one sixth, so that's about a half a million pounds, we will anticipate. Now, that's not great. The good news is that we have been able to offset some of that with some really generous donations that people have made for us and the continued efforts that people have made to to raise money for us in all sorts of imaginative and different ways. Yeah, so from that point of view, our income is lower than we expected it to be. But it's still, it's still OK, we have a good level of reserves, which help us get through that. And we're now restructuring our financial plans to make sure that we have a stable future going forward. But in terms of services, and that's probably arguably the most important bit. You know, throughout this period, we've managed to keep running the helpline. We keep providing up to date and accurate information, not least about epilepsy and COVID-19, which is obviously very important to so many people. We changed, really transformed, a number of our traditional services, like our local groups and branches, coffee and chat groups, those have all gone into a virtual mode, have been hugely successful and really popular. And, again, great credit to everyone involved with our local services team who've made that happen. One of the really big changes, I think, and really exciting areas has been e- learning. You know, this year, we've seen this year, something like 20,000 course registrations, 14,000 course completions, just in the first seven months of this year. That's more than double what we achieved in the whole of 2019 for both of those. So obviously, during lockdown, people are looking for things to do. And fortunately a lot of people have looked to our e-learning programmes, particularly the education ones. And we've had a huge response to that. So that's that's been great. And we've carried on with all of our usual activities, you know, we've remained engaged with people through social media and the website, we've been involved with the press and the media to raise awareness. Importantly, you know, particularly now, we're focused on getting epilepsy health services restarted, you know, that the NHS obviously had to completely reorientate itself in relation to COVID-19. But that's understandable but at the same time, people with epilepsy are still there, they still have needs, they still need care and they still need treatment. And it's really important that we make sure that those epilepsy health services are brought back online as quickly as possible, and that people get what they need. And the other, I think, significant issue that that's happened in the last few months during lockdown has been the publication of the Cumberlege report, which, again, Epilepsy Action was actually very instrumental in giving evidence to the inquiry. This is in relation to the impact of sodium valproate on particularly women with epilepsy of child-bearing age. And that's come up with a whole series of recommendations about the future care and treatment of women in epilepsy, which gives us a future campaigning focus in terms of making sure that its recommendations are actually implemented. So that could very easily have slipped by, during, you know, current conditions. And fortunately, we didn't allow that to happen. We made sure that that has been well and truly broadcast and we have put people on notice that, you know, we will be following this up and making sure those recommendations are followed.

We already are.

Exactly, exactly. It's very much, very much a topical issue, isn't it, Hattie? I know you've been involved with that too.

Yeah, absolutely. And just that's another example of where kind of decades and decades and decades of work have started to come to fruition. And for those for those women and those families to be heard, and to be seen, and for their awful experiences to, to have a have a light shined on them. And also, another example where those women themselves have been the driving force, you know, along with us to make that change, and hopefully now that it is out there, and that those recommendations can be put into place, things can start to change.

Absolutely, yeah. Yeah. I mean, there's, there's a real thread of work that does go back decades, you're quite right with a whole series of activities that we've done over many years in relation to advocating on behalf of women with epilepsy, but also working with women with epilepsy themselves to produce materials, to produce information materials to produce public awareness information, which really highlights the problems and the particular difficulties that women with epilepsy can have. And this in many ways, the Cumberlege report is a culmination of that. So it's again, like we were talking before, you know, change is incremental, it happens quite slowly, bit by bit by bit, you don't always notice it. And then suddenly, you get something like the Cumberlege report that comes along. And it kind of just brings everything together, all those years of activity, work, and suddenly, you see something comes comes out of it all really positive.

So we've walked down memory lane, and we've walked through the lifespan of Epilepsy Action or British epilepsy Association, as it was once known. And we've seen the difference in changes that have been made to people with epilepsy, but like we said at the beginning, and some of those things from that 1950s video are still very resonant, I think, for people today. And I think they will be as we look to the future as well. And so one of the things we've done as an organisation is that we've sat down with some people with epilepsy and we've asked them what they would like the future to be like, what changes they would like to see, and in the future, so we're just going to play that clip now.

What do you hope for the future for people with epilepsy? I hope for people with epilepsy that there is a lot more education. I hope that people at school, I hope that there's more first aid, there's more, just as young as schoolage, know what epilepsy is, or any disorder or long-term condition people need to, children need to know this. And, the DWP desperately, desperately need to work and coincide with charities to understand that it's not a tickbox exercise for epilepsy, just because we might not have a seizure pf every minute of every day does not mean that we are not disabled, and we need to help from our country and the government. And that's it. That is my my hope for the future of people with epilepsy, that there's more support.

What I hope is that the the research continues, and keeps moving forward to make life for people with epilepsy, easier. You know, less prominent in people's lives, I would say, and then more understanding. I don't know how you do that but more understanding about Epilepsy Action is and ensures that there's less stigma.

I hope that everyone with epilepsy gets the correct treatment and will go seizure free. I wish that for everybody with epilepsy. Not to live with the uncertainty and anxiety that come along with epilepsy, as you never know what's gonna happen day to day, hour to hour, minute to minute, or even second to second.

What I hope for the future of people with epilepsy is that they have a chance to do everything that a neurotypical person will be able to do. Because right now, there are things that people aren't able to do, because they have epilepsy, there are things that people are held back from. There is discrimination within the workplace and I'd like for that to change. If I could be a part of it, that would be amazing.

So yeah, and that covered a lot of the things that we've spoken about already, really, that the changes that we've already started to make with the Department of Work and Pensions and Personal Independence Payments. And something that we haven't touched on, I guess, which is that the treatments for epilepsy have have improved so much over the last 70 years, and they continue to do so and that we are passionate about improving people's access to the best healthcare possible. And, and also employment that, that we know as a charity that people with epilepsy really struggle with employment, that's something that, you know, people with epilepsy are some of the least likely, one of the least likely groups of people with any disability to be able to keep and maintain having a job. So that's something that really does need to change. And we are looking to and working to change as we speak.

Yeah, I think I think employment is a really important area. It's something we've, we've picked up on more, I think in the last four or five years as a really significant topic for a lot of people in epilepsy. And you're quite right. I think, you know, we hear from people about the discrimination that they face at work, whether that's in getting the job in the first place, or getting promotions and development in their careers, as a consequence of their epilepsy. And it's back to the same old story, I'm afraid is people's lack of understanding, lack of awareness, not appreciating the individual but seeing just the condition. And that's the challenge that we continue to face and continue to address. And as long as that carries on, as long as people hold those, those negative and inappropriate attitudes, you know, there's going to be work for us all to do.

What do you hope for people with epilepsy in the future, Phil, in particular?

Well, I tell you, Rich, and this is this might sound a bit of a cop-out answer, right, but, but actually, I think what I would hope for people with epilepsy is what they would hope for themselves. In many ways, you hear that, we hear that on a day-to-day basis about their aspirations, and their ambitions and their desires and their hopes for the future. And what I would hope personally, is that they get whatever it is they're looking for. And like every other individual we all want a number of different things in our lives. And I just hope that people with epilepsy get what they're looking for, and as an organisation, obviously, but very importantly, that's why we listen to what people say.

And that's why we exist, basically, it is why we try and provide that in some sort of way.

I think so and I think importantly, you know, it's a, it's a significant change, actually, I think over the over the 70-odd years that the organisation has been around. When it was formed, society was much more sort of patriarchal, it was much more, the concept of charity was much more about what people will do for you or for the client group, if you like. And I think nowadays, it's much more about listening to what people with epilepsy have to say and listen to what they want, and working with them, and helping them to achieve what it is that they want, rather than telling them what they need or what they want. It's about listening to them and working with them. And, and really helping them I think, to to put themselves forward to take the lead. In many cases, whether it's telling their stories or whether it's giving their experiences because as we've said already, you know, those are really powerful and emotive things that people really, I think, always respond to and listen to and learn from, which is the important thing. So, again, what I would like for people with epilepsy is what they want for themselves. And what they tell us is, the two things really, that they really want more than anything is to get the best possible healthcare and support they need for their epilepsy. And to get the public respect and fairness and understanding that they deserve. And those are right front and centre in relation to to Epilepsy Action and what it does. And that's why we focus on two very simple things, improving quality and availability of healthcare services for people with epilepsy and working constantly to improve awareness and understanding of epilepsy through education, particularly in training. And working, as I say, with people with epilepsy themselves. As far as you possibly can, bringing people together, I think, you know, which is again, is very, very important and showing this sort of collective response, so that people can see what epilepsy is really like, and what the experience of epilepsy is really like, and then formulate their opinions with that knowledge. And, you know, we've been doing that for 70 years, I suspect we're going to have to continue doing it for a lot longer. But things are better, you know, things have improved, attitudes are better now. There is arguably less discrimination than there used to be, there's less prejudice than they used to be. There are more opportunities for people with epilepsy than there used to be. But we know that there is still a long way to go, there are still many dragons to slay, as they say. We'll keep doing that.

I like that one. Phil, we've asked everyone that we've interviewed the same question to end off the podcast, but we're gonna kind of adapt it a little bit for you.

Here we go! This is the left-field question is it, ok?!

No, it's not that left-field. We've been asking people if you could tell someone who is newly-diagnosed with epilepsy, what would it be? I guess, I guess for you, Phil, if you could tell someone who is newly-diagnosed with epilepsy in 2020, what would it be?

Oh, crikey. One thing?

A couple of things.

Ok, ok, I'll give you two answers. Can I do that?

Yeah, absolutely.

Ok, I'll give you the kind of, the simple, straightforward answer if you like and that would be, someone newly-diagnosed with epilepsy right now, it would be to say 'Don't panic. You're not alone. You're not the only person with epilepsy. There are hundreds of thousands of people with epilepsy in this country. And it doesn't have to be a barrier to the rest of your life. You can still have a great life, do many great things. Don't let epilepsy rule your life. You can get through this'.

Yeah, for sure. Did you have a second thing?

Well, I think, you know, a more nuanced answer, shall we say, is taking account of the fact that, firstly, epilepsy is so different for so many people, to give one piece of advice to all people with epilepsy is really, just isn't going to work. But what I said previously, in many ways does apply to everybody. However old you are, when you're diagnosed, whatever gender you are, whatever your background might be, wherever you are in your life, that kind of, 'don't panic, you can get through this', I think is an important message to get across and that you're not alone. You know, you are not on your own with this. And there are not least organisations like Epilepsy Action available to help and support you if you need us. But there are many other people with epilepsy out there, who are doing great things, amazing things, having fantastic lives, and you can be one of those. But you do have to take account of the fact that, you know, people with epilepsy are diagnosed at different ages and in different circumstances. And so a simple, simple piece of advice like that can be a little bit trite, you might say. So I think, again, importantly, and this is something I think our Advice and Information staff do brilliantly, is that they take account of individual circumstances and they respond to the individual, not just to the epilepsy and so the advice that they give is very tailored to that person so that it's relevant and sensible.

Absolutely. Well, thank you very much, Phil. I think great advice on both accounts. So 70 years, guys, I guess, shall we should we meet again in 2090 or what?!

Yeah - 140!

Well, I might have to take a rain check on that. But by all means, go ahead. And, you know, and enjoy it, but yeah it would be nice.

We'd be in a VR headset zoom.

Yeah, yeah, exactly. Exactly - yeah, yeah.

It'll all be like, neuro-linked, or something, I don't know.

Probably. That'd be something something, it'd be something else. Yeah, almost, almost certainly.

Well, it's been awesome to be a part of work that's gone on for the past 70 years and that has made such a difference. And I know personally, that's something that is a real privilege. And I really look forward to working more with people with epilepsy in the future to create more change, for the better.

Yeah, I'd agree with that, Hattie. You know, I've worked for Epilepsy Action with people with epilepsy for, oh crikey, 32 years I think it is, now. And it's always been a privilege, I think was the word that you used. And I would repeat that, I think it's been, it's been amazing. I've met some fantastic people and really inspiring stories. And every day is different when you're working with Epilepsy Action, but it's always exciting. And it always gives you huge satisfaction, not least when things go well, and we get things right. And you see that people develop in that they grow and they do go on and have fantastic lives, many times because of the work that charity has done with them. So yeah, it's been it's been a long time I've been involved, but you know, every moment has been fantastic. So I look forward to the future, really, I think is the important thing as well. You know, the past is relevant, it tells us where we come from. But I think we have to look to the future. And you have to say, you know, let's make that better, even better than it already has been.

Thank you very much for your time, Phil, I appreciate it.

No. thanks for the invitation Rich and Hattie. It's been great chatting to you.

And that about wraps up this episode of the epilepsycast bonuscast looking back over 70 years of Epilepsy Action, we've done a lot. You know, we've had so many positive milestones. But, as we were talking about in the interview, we know there's so much more work to do. But we do hope you enjoyed kind of listening to some of those milestones, a bit of the history of epilepsy and Epilepsy Action and where we kind of see the future heading for people with epilepsy. And we know how important that is to you guys. So if you ever want to, you know leave any feedback or if you want to let us know what you think the future should be like for people living with epilepsy, please always do get in touch with us on social media at Epilepsy Action on pretty much everything. Or you can email us at podcast@epilepsy.org.uk. Hopefully we'll have a Season Two coming so we'll always get your feedback on that. And of course as always, make sure you subscribe or follow us on your favourite podcast platform so you never miss an episode. But as we said on the last episode, we're gonna take a step back, look at the podcast, look at you know all sorts of things about how we want to release it and stuff like that. And I know we do have a lot of loyal listeners out there and we can't thank you enough for listening. But yeah, like I said, just keep an eye out and we'll let you know when we back shortly. So cheers for listening, guys.