Loading summary
Transcript146 lines
- [00:07]
A
Hello and welcome to this podcast from the Ms. Trust. I'm Nick and I'm joined by our host, Helena. Hey, Helena.
- [00:14]
B
Hi, Nick. How are you today?
- [00:16]
A
Yeah, all good, thank you. What about yourself?
- [00:18]
B
Yeah, it's a bit of a chilly start to the day, but it's all good. Me and Nick, we work at the Ms. Trust, which is a charity for people affected by Ms. In the uk, and we are here to help you make some sense of Ms. And today in particular, we're going to try to make some sense of.
- [00:37]
A
Advanced Ms. Yeah, before we start getting into that subject, Helena, we're just going to put a warning here that we are going to be talking about some difficult subjects today, like Ms. Symptoms and death.
- [00:53]
B
So what is advanced ms? I'll be asking Advanced Ms. Champion nurse Michelle Black this later on, but we thought we would try and explain a little before we get started with our guests. So on our website we have an A to Z, which is great for finding out all sorts of things about the Ms. And this is how it explains advanced Ms. It says advanced Ms. Is a description of the level of burden and difficulties that Ms. Is causing you, rather than the type of Ms. You have. So obviously you might have heard about, you know, primary progressive Ms. Relapsing, remitting Ms. This is not that type of type of ms, it is more of how heavy your symptoms are.
- [01:38]
A
Yeah, that's right, Helena. And some people, when they're having a relapse, may be affected very severely, with symptoms and disability suddenly getting much worse as the relapse resolves, symptoms typically improve either partially or completely, whereas the worsening of ms, to the point where it might be considered advanced, typically happens more gradually and the symptoms don't go away. So for some people, this worsening of symptoms can happen quite rapidly. So to understand a little more of what it's like to live with advanced ms, I've actually spoken to two of our guests today. So that's Mark Webb, who lives with advanced ms, and also Jen, who is a carer for many years for her husband Dave, who lived with Advanced M.
- [02:24]
B
So there's lots to get through today. So I think we will start by listening to Nick chatting to Mark Webb.
- [02:32]
A
Hello and welcome back. We're joined by Mark Webb. Hi, Mark.
- [02:37]
C
Hello.
- [02:38]
A
Great. Great to have you with us. For anyone who's unfamiliar with yourself, could you introduce who you are and what you're.
- [02:49]
D
Yes, of course. So, I know I look 21, I'm actually 56. I am medically retired due to a disease I suspect we may be talking about. I spent all of my life or nearly all of my corporate my life working for corporations. So and they all started with D. So Disney for 10 years, David Lloyd Leisure, the health and fitness group for three years and Dixon's now curries for 11 years. I retired full time work about six, seven years ago just before lockdown. I worked for Shift MS, another folks fabulous charity for two or three years and then took full retirement. Though nowadays I'm a very active, an active activist and I make some decent money as a public speaker.
- [04:02]
A
Thank you so much for sharing and obviously you've mentioned Ms. There and can you tell us about how multiple scoliosis affects you?
- [04:10]
D
Yeah, so I've got, I've nowadays got secondary progressive Ms. I know it's a very vague idea as to when you move from relapsing, remitting to secondary progressive but that was five or six years ago. I'm a wheelchair user with and I, I can't walk a step anymore and my left arm and my left hand is scrunched up now and my right hand is scrunching up so I'm losing the battle in mobility terms. But there you go. I'm going to dangle a suprapubic catheter bag in front of me so at least I don't have to wear pads anymore. I have cog fog and short term memory loss and chronic fatigue. I guess the only couple of symptoms that, touch wood, I haven't been impacted by at all are optic neuritis. I've never had an issue. These are middle aged glasses I'm wearing as opposed to Ms. Glasses so to speak and any form of depression so far. So at the moment I'm a happy chappie and at the moment I can see.
- [05:44]
A
Thank you for sharing Mark. And can you tell us about if you feel that your Ms. Is, is advanced ms?
- [05:52]
D
Yes, I know some people don't like that term but on the, if you're familiar with the EDSS scale which is a measure of just your mobility. I'm kind of eight, eight and a half. So I'm not far from sort of spending an awful lot of time in bed and being unable to manipulate myself around in a wheelchair. So yeah I'm, I'm pretty advanced.
- [06:26]
A
And, and when did you start using that term for, for your MS? Advanced Ms.
- [06:34]
D
3, 4 years ago roughly during lockdown. I did a. I've, I'm always doing nonsense stuff like well when I used to be allowed to jumping out of planes and doing tough mudder and all sorts of things like that. But obviously in lockdown I couldn't do an awful lot so I, I spent time wandering up and down our patio, rolling up and down our patio and just trying to keep moving. And towards the end of lockdown I, I lost the ability to drive because the, the, the push pull system with driving, I wasn't able to do it anymore and I was just losing the ability to walk. So I guess the end of lockdown.
- [07:26]
A
Yeah, around that time period. Yeah, yeah. And with the services that you access, Mark, do you find that they've changed since your Ms. Has progressed?
- [07:39]
D
Yes, it's funny, I was, I'm doing a second trial, a drugs trial. I'm on the Chariot Ms. Trial which is aimed, it's Cladabrin for people with advanced ms, so it's chemotherapy or placebo and it's aimed to keep your, your dexterity, your upper strength. So in that sense I'm feeling the love. And before Chariot MS, I was on the Ms. Stat 2 trial which was trying to keep mobility going. That, that one didn't work out and I've just found out I was on the placebo. So I've, whilst I've moved to advanced Ms. And I've described it in various chats as being on the shelf. So, you know, past, past help actually, because I'm on my second trial, I'm actually getting all the love, so extra monitoring and whatever, so I haven't experienced that complete being forgotten about because I'm on trials.
- [08:53]
A
Got you. Yeah, gotcha. And aside from, from the trials that you've been doing, Mark, what do you think about services for advanced ms? And you can be as honest as you like here with this one.
- [09:06]
D
I, I think a lot of people are probably upset with the level of service that you get when drugs don't help anymore or when, when DMTs don't help anymore at least. And I, I can see that and, and that's why I take part in trials. So I, Medicine can only do so much. But at the same time, when I started on my journey after I was diagnosed, one my neurologist said, well, it's a bit light, your MS, so we won't treat you with anything. So the understanding that you go in hard, that is very clear now, wasn't there, there's various other things like heading off to Mexico you can do. So there's so much more and progress is brilliant. And now, sorry, I'm not going to keep going on about these trials but you know, I'm trying My best and lots of others, you know, lots in, in the neurology community are trying their best to help us but at the moment it's tough and it's a, it's a complicated disease.
- [10:25]
A
Yeah, absolutely. And thank you for being so real and honest about, about that subject as well. And you know, you mentioned earlier about kind of moving up and down your patio, whether that was walking or rolling. Do you do anything else to look after yourself in terms of self management with ms?
- [10:46]
D
Weights in bed or on my, on my chair. And until recently I was playing wheelchair rugby really badly. You know, by the time I took up wheelchair rugby I was pretty bloody rubbish. But I, I loved that I, nowadays I can't really get my gloves on to and I, I was really crap. But I loved the, the community that was there and I, I, I just, well one, I love my public speaking partly because it pays some bills and partly because I get the, you know, audience love and I talk happily about catheters and I name drop celebrities and just, I make bad jokes and everything else. So I, I enjoy that. That makes me feel good as does my activism and my involvement with, for example, the Disability Power 100, the most influential disabled people in the UK. So, so there's some, some community love and also just some. I have this word, I've, I think I should patent it. Nonsensing. I've mentioned the wheelchair rugby, I've mentioned the bits and bobs that I used to do, tough mudder and whatever, but just last week I was skydiving, indoor skydiving. Sadly I'm not allowed to outdoor properly skydive, but I was indoor skydiving last week, so is trying to find activities in between the fatigue, in between the speaking that keep me just buzzing.
- [12:44]
A
Wow, that's incredible. And I can speak for everyone at the Ms. Trust and we say, we also really enjoy your public speaking as well. So it's great.
- [12:52]
D
Thank you.
- [12:53]
A
What other people are involved in your health and care, Mark?
- [12:58]
D
So I have a team of carers who are provided by the nhs. They come and hook me out of bed around about 11 in the morning, which is a bit late for me, but if I took an earlier one it would be seven in the morning when I'm usually deep asleep, so I have to take the later one and they come to take me to bed about 7:20, which is a bit early for me, but such is life. So that, that, that's a bunch of carers. They're, they are all, well, with one exception. She's Ghanaian, but Every single one of them elsewhere are Nigerian. So I'm learning Yoruba, which is a, one of the, the native languages of Nigeria. So I can say my legs are dancing. Let's go. Hello. See you in the morning. See you tomorrow. Thank you. I love you. Call me. Just lots of nonsense, but even a banana board, you know the transfer thing that you use to get into bed. I can say that OG day is banana. So. So a team of carers. Monday to Friday. I have a lady who comes in 9 to 5 or 9 to 5:30, kind of part housekeeper. In previous times she'd have been a nanny for our two children. But our children are teenagers and one's a 19 year old now. So getting past that, but. And kind of a carer, putting my socks on, whatever, and the traditional stuff. The Ms. Nurse, neurologist and I used to go to a fantastic Ms. Center called the Chilterns Ms. Center. It's one of the best in the country, I think. But I struggle with the energy and frankly the timing between getting out of bed and going back to bed. So I tend to, if I feel my exercising drop off, I tend to subscribe to online courses to motivate me to exercise again.
- [15:31]
A
Thank you, Mark. That's really, really helpful. We're off to some words of wisdom. Mark. So what would you say to anyone who's coming to terms with living with advanced ms?
- [15:46]
D
I'm not going to criticize people who call themselves Ms. Warriors and I know that's a very popular term, but I don't subscribe to that. Just like, should I ever get cancer, I don't want to be talked about as battling with cancer or eventually losing my battle with cancer. It's, I don't think it's a fight now. I, I fight every day to function, but I, it's a kind of acceptance of my condition and living with it and working around it rather than bashing my head against it every day. So, so I think it's acceptance and that's easier said than done. You know, grief is, grief can happen overnight when you, you lose somebody and then you, you, you cope. But with a progressive disease, you're, you're grieving a condition one day and the next day you've got some kind of new situation to deal with, a new symptom and not a realization that one year ago you could do something because of a Facebook reminder that yet last year you were jumping out of a plane, to use my example.
- [17:11]
E
But.
- [17:15]
D
I think it is an acknowledgment that you are slightly buggered and then looking at what's good and what you still can do rather than grieving in the past as to what you can't do. So I mentioned the indoor, the skydiving. I bloody used to love it. And yet last week I was indoor skydiving. So bugger can't do the skydiving anymore. Hooray. I can indoor skydive. So it's looking for opportunities, looking for things that you can do rather than feeling sad about the past. Because, you know, much as though I am looking for magic stuff out of the various treatments that I'm trying out, I'm really doing that for the next generation and I'm just going to enjoy what's left of my life.
- [18:13]
A
Yeah. Wow. And have you always had that perspective, Mark, or is that something that you've developed?
- [18:21]
D
I. I think I've just had the most amazing life. I really have been so lucky. So, yes, I. I don't know if it's nature or nurture, but I've. I've got a wonderful wife tomorrow. I'm on my 25th wedding anniversary.
- [18:45]
E
Woohoo.
- [18:46]
A
Congratulations.
- [18:47]
D
Thank you very much. We've got two wonderful children, 19 and 14. I've got a small, very compact set of great friends. I've had really a brilliant career and now I get to go to amazing events. I was at the Paralympics, courtesy of the Shore Trust, who run the disability power 100. So, no, I. I just, I. I feel I'm blessed. I. I feel I'm a lucky, happy chappie and I've had a brilliant life. It may be a little bit shorter than other people's, but I sod it.
- [19:30]
A
Thank you, Markin. In terms of advice, is there anything that you would say for people advocating for the services that they need when they're living with advanced ms?
- [19:43]
D
Well, one, I would push them, you know, we can't complain about the lack of love and then not to, to me, not look at trials and opportunities there. So that's one way of advocating, is keeping the attention of the neurology and the NHS and the Ms. Nurse communities. So I would push people to go for trials because if you hate the disease and you've got children, then you want their life to be better than yours in pure Ms. Terms. But secondly, I'm not against getting a bit shouty and pushing for a meeting, a call, a review of symptoms, a review of medication. I just think we need to be a bit pushier than your early Ms. Your person who's just started develop Ms. But the services are still out there even if the treatments are currently less effective. But that's why I do trials.
- [21:07]
A
Yeah. Thank you so much, Mark. Thank you. Mark, have you got any closing thoughts at all before we let you go?
- [21:15]
D
No, I'm, I'm looking forward to some nicer weather because I, my, my last nonsensing, I was supposed to be going up in a paragliding but got cancelled. So if you could sort out the weather for me, then that would be brilliant.
- [21:33]
A
We will, we will do our best. And Mark, where can people find you online?
- [21:40]
D
I talk an awful lot on LinkedIn. I, I find that the safest social media site at the moment. So if, if you look up Mark Webb and type in Dixon's and Disney, you'd find me talking nearly every day with what I call a positivity post of the day. It's not always positive. I, I do, I don't always claim that life is rosy. I'm on instagram @mark webb, 99, as I am vaguely on Tick Tock and as I said, I'm 21, not 56 and I blog@oneman and his catheters.com. i've kind of let that drop recently, but the plan is to resurrect that properly in the new year.
- [22:31]
A
Thank you so much, Mark. We'll make sure we link to all of those resources in the show notes as well so people can find you. That's fantastic.
- [22:38]
D
Brilliant.
- [22:39]
B
It's hard to say exactly how many people live with Advanced Ms. In the UK today. Some Ms. Trust research suggests that it could be as much as a quarter of the Ms. Community that are living with multiple complex Ms. Symptoms and needing extra support. We think it's extremely important to talk about advanced Ms. And speak up in support for all the families affected. And I hope that if you are living with Advanced Ms. Or if you're a carer of someone with advanced Ms. That you're not alone. Isolation can be a huge issue and having others to talk to that are in a similar situation can be extremely important. With the advice of a long term carer, the Amherst Trust created a private Advanced Ms. Facebook group for people with advanced Ms. And for carers to be able to chat to others in a similar situation. So please have a look for Ms. Trust Advanced Ms. Care and support group on Facebook. Before you can join, you'll be asked some questions so we can make sure that it's the right people that join and to keep it a safe space for people affected by advanced Ms. Thank you so much for Listening to me. And now back over to Nick, who is chatting with Jen about life as a carer for a person with advanced Ms.
- [23:50]
A
Thanks so much for jumping back in with us. So we're joined now by Jen. Hi, Jen.
- [23:55]
C
Hello.
- [23:56]
A
How are you doing today?
- [23:58]
C
I'm really well, thank you. How are you?
- [24:00]
A
Yeah, not too bad, thank you. Not too bad. So just before we get into our interview with yourself, could you. Could you tell us a bit about who you are?
- [24:09]
C
Yep. I'm Jen Warrior and I was carer for my husband Dave for about 19 years. Sadly, he passed away April last year due to complications arising from Ms. But, yeah, almost 20 years. It was a ride.
- [24:30]
A
Yeah. Yeah. Thank you so much for sharing both of your stories with us today. We really, really appreciate it.
- [24:37]
C
No problem.
- [24:39]
A
So can you tell us a bit about your journey of becoming a carer?
- [24:45]
C
I pretty much fell into it right from meeting Dave, really. We met online, arranged to meet up sort of in real life and then he disclosed to me that he had Ms. And asked if I knew anything about it, which I didn't at the time. So he then passed me a link to. It was you guys actually at the Ms. Trust to get some basic information on it and the reason why I had to disclose it straight away was because he was using a walking stick at the time, so his disability was quite visible and obviously he didn't want me to just turn up and be like, oh, so yeah, as I say, he was quite disabled when we first met before our dates and whatnot. I'd help him show shave because he suffered with tremor. Obviously we'd have to look at various means of transport because he couldn't walk very far. And yeah, it kind of grew from there really. When I moved in with him a couple of years later, I pretty much became his carer all the time then because he'd quit work due to his disabilities being quite high. So it started from there, really.
- [26:10]
A
Yeah, yeah. Thank. Thank you so much for sharing. And just during that time, Jen, what. What were some of the biggest adjustments that, that you made to your life?
- [26:22]
C
In all honesty, it wasn't huge. We seemed to just fall into life quite well, I think. I guess the main thing was not going out as much as we'd like to because it was bit of a military operation to arrange taxis and, and whatnot. So if we wanted to go anywhere because neither of us drove. But it wasn't. Wasn't too much of a massive adjustment, really.
- [26:53]
A
Yeah, yeah, yeah, I can imagine. I think probably a lot of people listening to this will know what you mean about the. The military operation as you described. What did a typical day look like for yourself and Dave?
- [27:09]
C
I was working up until 2015, I was working full time. So I'd get up, help Dev arrange all his things so they were like, nearby for him, around his computer table, making sure he had his lunch, making sure he had his urine bottles for if he couldn't get on his wheelchair and get to the toilet quick enough. Basically just prep him for the day so that he would have everything that he would need within close proximity, really. And then I would get home, catch up with him and his day, see how he'd gone. Then it would be bath time maybe. So that'd be a good hour of a job getting Dave in and out of the bath, getting us to bed, making sure he'd had his meds and that, that. That was the bulk of our time together until the last few years.
- [28:13]
A
Yeah, yeah, yeah. No, thank you. And I think just listening to you there is when you start to realize how much people in that situation do for each other, isn't it? And the level of support.
- [28:27]
C
Yeah. Because you, you, when you're a career, you're not only like, living your life, you're living somebody else's life as well, because you, you've constantly got to be thinking about, like, what they need and preempting situations where they might need help. As I say, like making sure he had all his means of contact nearby, making sure that he had his phone numbers updated in his phone so he could bring me an emergency or ring his parents if he needed them. So, yeah, you, you're constantly thinking about two people's lives, like all. All the time.
- [29:03]
A
Yeah, absolutely, absolutely. And how did you manage some of those challenges in terms of emotional and physical challenges? When it comes to caring.
- [29:15]
C
Physically, it wasn't too much of an issue. I think the main issue that we had was Dave was 6 foot 3, so he's quite a tall lad. So navigating his immobility was quite challenging. On some occasions, as I say, like getting him out of the bath and things like that, or if he fell, they were often nights where we. We'd be laying on the floor all night because I just physically couldn't get him up. So we'd set. Set down blankets and cushions and things like that, and we'd just lie on the floor till the next day when he, he's. He was a bit less fatigued so we could get him up emotionally. It was quite tough because I suffer with poor Mental health. Anyway, so it's quite difficult navigating the isolation of being a carer because nobody really understands what it's like unless they're actually living it or they're close to somebody living it. So that was, that was quite difficult. I used online things quite a lot like Facebook groups with like people with Ms. Like obviously there's the Ms. Trust group which is excellent for just general information and whatnot, but there's also like little niche Ms. Carers groups where people in my situation would just all get together and you know, we could vent, we could seek advice and just, just share our experiences. Really. I think that's the key to managing being a carer. It's making sure that you've got people that you can share your experience with because it, it just to get it out. It, it just, it means everything.
- [31:10]
A
Yeah, yeah. Did you, did you feel that sort of sense of connection with, with other people?
- [31:15]
E
Oh, very much so, yeah, yeah, yeah.
- [31:18]
C
If it hadn't have been for Ms. Groups online, I would have really struggled because there's, there's only so many times you can talk to people who aren't in this situation about carer specific things, you know, like toileting and things like that, whereas you speak to other carers about it and you know, you can make a light hearted joke out of it and turn something quite dark into something quite light hearted, which is also okay. Good sense of humor is definitely a must if you're a carer. It gets you out of a lot of dark places.
- [31:53]
A
Yeah, that's, that's such a good tip for others, isn't it? Yeah, yeah. Alongside some of those groups, Jen, were there any other organizations or resources that, that were helpful?
- [32:07]
C
In Lancashire where I live, we have a group called Encompass and they run Lancashire carers. Through them I could access counseling. I got a yearly grant which was like call a Time for Me grant, which was around about £300 for me to spend on something for me and me only. And that used to pay for my transport down to my parents because they live all the way in Devon. Because obviously when, when you're a carer you kind of fix with your income, you sort of, you have to be really good at budgeting and whatnot. So you don't always have the cash to help with things like that. So that was, that was a massive help. They'd give me a yearly carers assessment and sort of point me in the direction of other organizations that I might need to speak to regarding like benefits and adaptations to the house or like grant systems for equipment.
- [33:12]
B
So.
- [33:12]
C
So, yeah, they were really, really quite helpful through the years.
- [33:18]
A
Amazing, amazing. Thank you. And we'll make sure that we link to them and other resources as well that we mentioned.
- [33:25]
D
Yeah, yeah, yeah.
- [33:28]
A
Alongside the tips that, you know, you've already talked about, have you got any tips to navigate the NHS that you might be able to share with us?
- [33:40]
C
Building up a good relationship with the care providers was the main one for me because my husband was put technically classed as palliative for, like, the last 15 years and we. I personally had an excellent relationship with his neuro rehabilitation consultant. You know, if I needed anything, I could just get in contact with him and he set up referrals through to, like, salt the speech and language. And when Dave was, like, struggling with his swallowing and if anything else was going on with his body, I could just say, right, this has happened. And, you know, just having that good relationship. And it was. It was the same when he ended up being tube fed. I had an excellent relationship with his dietitian and we tailored everything to Dave and she was actually an excellent help with me as well, because we built up this good relationship. She helped us to eventually get NHS continuing health care. She was one of my advocates for that. So I suppose that that's the key thing, really. It's building up good relationships with the people that are dealing with your care.
- [35:00]
A
Amazing. Yeah. It sounds like you had such good relationships with a number of different. Different practitioners.
- [35:05]
C
Very much so, yeah.
- [35:06]
A
Yeah. And so important is it, because I imagine a lot of the time they're working, you know, one team will come in and look at, you know, the peg feeding and then they'll talk to speech and language and.
- [35:18]
C
Yeah.
- [35:19]
A
A lot of different parts of the NHS involved, isn't there?
- [35:23]
C
Oh, yeah, definitely, yeah. There's so many different teams, especially when Ms. Gets to the very advanced stages, because there's so many different parts of the body that aren't working as well as they should be, that you need all these different branches from your little NHS tree. So you do tend to have quite a lot of experts helping you with different parts.
- [35:47]
A
Yeah, yeah, absolutely. Jen, we've talked about this a little bit already, but do you have any other tips for managing your own mental health and physical health when you're a carer?
- [36:00]
C
I'd say if you start encountering any problems, get help. It's as simple as that.
- [36:07]
E
Just.
- [36:07]
C
Just get help. There is help out there. Might take a little while to get sorted out. I mean, I was under the community mental health team when things were getting really quite poor for my. It was. It was after Covid, actually, because obviously, as everyone will know, Covid had such a huge impact on Ms. Sufferers and their carers and the sheer isolation and the stress and the worry of, you know, the person that you're caring for. Contracting Covid, it led me to have quite a substantial spiral in my mental health. But my local NHS were, you know, they were really good. And I also accessed some counseling via Encompass, which I got within the space of a couple of weeks, because they put me through on, like, an emergency referral. So there is help out there. You just have to. You do have to find it, but there is help out there and it's. It's about speaking up and saying that you're struggling.
- [37:21]
A
Yeah, yeah. So important, isn't it? Just, you know, acknowledging it, you know.
- [37:26]
B
Exactly.
- [37:27]
A
Yeah, yeah.
- [37:28]
E
Even if.
- [37:29]
C
Even if it's just going on some kind of medication just. Just to help settle. Settle the mind and. And help. Just help you deal with things that little bit better. Just something as simple as that can help.
- [37:42]
A
Yeah, yeah, absolutely. Yeah. Thank you, Jen. And do you have any. Any advice for carers who are in similar situations to. To yourself and Dave.
- [37:57]
C
Again, it's making yourself known to people because if you're not known to the services, then you can't access the services. So it's all about, again, as I said with the nhs, it's building up good relationships with things like social workers and any gps, anyone that's involved. So when problems do arise, you've got that point of contact straight away, so the things don't fester. I mean, I'm not going to say that it. You know, the past 20 years were an easy ride because at times it was incredibly difficult, but it's about speaking up and being brave and saying that you need help with things and again, making sure that you've got those good relationships with people.
- [38:51]
A
Yeah, definitely. I think we're going to take so much away from this story, Jen. You know, what you said about the groups, you know, humor, speaking up, making those good relationships with. With as many care teams as you can.
- [39:05]
C
Yeah.
- [39:06]
A
This has been so helpful for me as well, to listen to.
- [39:09]
B
To.
- [39:10]
C
Oh, thank you.
- [39:12]
A
Yeah. Well, thank you so much for sharing everything with us, Jerry. Really, really appreciate it.
- [39:17]
C
Not a problem.
- [39:18]
A
All right, well, thank you so much.
- [39:20]
C
You're welcome.
- [39:21]
A
All right.
- [39:22]
F
Hi, podcast listeners. Oscar here from the Ms. Trust's fundraising team. You've been listening to our episode about advanced Ms. So I'm just dropping in to Let you know about our Advanced Ms. Champions program. Based on our research people living with Ms. We noticed there was a real gap in care systems for people living with advanced Ms. And so we helped to create the Advanced Ms. Champion role. The Advanced Ms. Champion program helps place specialists in collaborating NHS sites across the United Kingdom. We offer expert training, personal support and vital funding so Ms. Care systems can put in a healthcare professional that can offer a more personal, personalized service for people with advanced Ms. Advanced Ms. Is a complex form of ms, but advanced Ms. Care doesn't have to be complex. Your support can help the Ms. Trust to implement Advanced Ms. Champions in other regions and ensure that everyone with the condition gets a specialist that can get to know the complex needs and the person behind the condition. You can find out more about the Advanced Ms. Champions program, including more about Michelle, who is part of this podcast episode on our website at www.mstrust.org. while you're there, please consider making a donation so we can continue to be there for the changing daily needs of people with advanced Ms. And everyone with the condition. Thank you for listening. And now back to the podcast.
- [40:45]
B
So I am here now with one of our Advanced Ms. Champions. We're going to talk a little bit about what an Advanced Ms. Champion is later on. But before we start, I want to say hi to Michelle and would you mind just introducing yourself and tell us maybe how you got about to work in the field of Ms. To start with.
- [41:03]
E
Oh, hello, my name is Michelle. I'm the Advanced Ms. Champion at St. George's Hospital. I first came across looking after patients with Ms. When I was a community nurse in East Sussex. So we would look after many patients who. Or people who had ms, many of which were advanced symptoms, looking after their catheters and their symptoms. But I think one thing that I never felt was that I understood their Ms. Symptoms fully. But I grew very close with all of these patients and I wanted to know more and more about Ms. And then when the opportunity came up in our trust to become an Ms. Specialist nurse, I applied for the job and then got the job. So I worked in East Sussex specialising in Ms. For a few years and then I saw the role of the Advanced Ms. Champion, which combined my two loves. So working in the community and looking after patients with ms, which is why I'm in the role I am now.
- [42:10]
B
So perfect job for you, really.
- [42:12]
E
Then it really, really was. Yeah, yeah. So I still live in East Sussex. I can mute up. But that's just how much I wanted to care for people with advanced Ms. Out in the community.
- [42:25]
B
That's absolutely lovely. So we're here to talk about advanced ms, and the first question really that I got for you, Michelle, is what is advanced ms?
- [42:37]
E
So advanced Ms. Is people who are severely affected by their Ms. So people who have complex symptoms, often multiple symptoms, which often require daily support, whether that be daily support from loved ones or carers, they often have to have specialist input as well to be able to manage their symptoms. Often their symptoms can change, so it's an ongoing assessment. So it's severe people with Ms. Who experience severe and persistent symptoms that affect their lives. So it's not a type of Ms. Like progressive or secondary progressive or primary progressive, but it's people who have Ms. Who have a high level of physical impairment.
- [43:32]
B
Am I right to say that this is can be across different ages as well? It's not just in older patients, it absolutely can.
- [43:42]
E
So it can be patients who have had a significant relapse which has significantly affected their Ms. Symptoms, and it can be people who have had Ms. For a number of years, often along. It can happen over a long period of time, but that's not always the case and that's not always what we see. I know on my caseload, I have such a variety, a range of ages, from people in their 30s up until their 90s, and people with different. Who had been diagnosed with different types of Ms.
- [44:23]
B
And what are some typical symptoms of advanced ms?
- [44:28]
E
There are many symptoms of Ms. That can be affected. Within advanced ms, it can affect their cognitive impairment, so their cognitive functioning. It can affect mood depression, low mood. They can experience a deterioration in vision and hearing taste. People can become affected by with their speech and their swallow. It can affect breathing. And then there's different symptoms. Those severe pain needs to be managed. They can have problems with spasms or spasticity, with tremor or with loss of sensation. They experience weakness and that can be at any part of their body. And it can affect your bowel and your bladder. You can have pressure sores, weight loss, which can be due to dehydration, poor nutrition, and they can suffer with recurrent infections and often an increase in their fatigue. Right.
- [45:42]
B
So it can be a sort of plethora of lots of different symptoms, many, many symptoms.
- [45:50]
E
And sometimes people may just be experiencing one symptom, which is rare, that it's just one, but it can be so significant that it severely impacts their life. Or they might be suffering with a multiple of symptoms, but they can also be on different levels, so it's not always at the same level. They can have things which are affecting them more than others.
- [46:12]
B
At the Ms. Trust, we very lucky to be able to help the NHS out with some of the advanced Ms. Champions. But what is an advanced Ms. Champion? I mean, you are one. So how do you sort of function in the world of Ms. Care? What makes you different from, say, the rest of the Ms. Team?
- [46:35]
E
So I think the difference with the advanced Ms. Champion is the level of input that we have with people who have advanced Ms. So I think the biggest difference is that every assessment is a home assessment. So you go to their home to go to the home and visit the home where you really see how people are living. So I think that one of the biggest differences that makes is often when people have advanced ms, they're not always, they aren't always able to articulate certain things which can be very difficult in a hospital appointment or over the telephone. So you get to see their environment, you get to see meet their loved ones, you get to know their pets and you really get to understand what is important to them. So you really get to know the person, you get to understand their life, you have an opportunity to understand their journey and how they are where they're at at this time. So I think that is so vital if you want to really get to know what is important to your, to your patient. So living with advanced ms, often I go in and I see things that need identify, that I identify, I think that I can help with. So it will be making referrals onto different professional. Because the one thing I've really learned in this role is that you cannot do this job in isolation. You need the input and the expertise of other healthcare professionals to be able to get the best outcome for the person with advanced Ms. So often it's going in really having the discussion with the person with advanced Ms. As to what is really important to them. You know, often we go in and we think we know what their priorities might be, but often it's not always what we think. So it's really establishing that relationship with the person with advanced Ms. To make sure that their voice is being heard, to make sure that the things that they really find difficult that you are addressing and listening to. So part of my role as well is organizing multidisciplinary team meetings, because often with the advanced Ms. You have a whole multitude of different professionals involved. And one of the things I always make sure I do is have the MDT at my patient's home so that they can be some healthcare professionals if they're able to come to the home, will come to the home, but often it might be done by a team. But what that makes sure is that the person with advanced Ms. Is included in that meeting and that they're at the forefront and that they hear everything that's going on them. And obviously their loved ones or their carers can also be involved in that. So that's one of the main things that I do within my role. We make lots of different referrals, I think, really get to assess the symptoms. I think that's how it's kind of quite different to the role of the Ms. Nurse. So another of the. I think the really important aspect of my role is education. So I am able, when I go into people's homes, to have the opportunity to explore their understanding of their Ms. And how it's impacting them also to. For their carers and their loved ones to be able to educate on their symptoms and. And to be able to educate and help support them in the best way to help to manage the symptoms. So it's really about holistic care. It's, you know, pinpointing what their priorities are, not only looking after the person with advanced ms, but also looking after their loved ones and their carers who it also, I do feel when you go into someone's home, it's a really privilege to place to be because they have the opportunity to open up and really often be able to express how they're really feeling. And often they don't want to say this to their loved ones or their carers because they don't want to burden people with it. So I think being given the opportunity to be able to speak to somebody about how you're really feeling and see if you can do anything to help with that going forward, it's a very privileged place to be. And I always make sure that I have an opportunity to speak privately with the person with advanced ms, but also to the people who love them and support them.
- [51:33]
B
We have two other guests that are on the show as well, and one is a carer and one is somebody who lives with advanced Ms. And I think they both talked a lot about the importance of carers within the treatment. And I think the person who is the carer, again, she was talking so much about having to advocate for yourself and getting to know the system, and I feel like they didn't have an advanced Ms. Champion as far as I know, but, you know, having to have that and especially for you to be able to be in their home, home and talking about these things in a sort of safe environment for people. I think that's. That must be like you say, it's a big privilege, isn't it?
- [52:13]
E
Yeah, it's a huge privilege because people trust you to with the information that they're giving you, you know, and then they trust that you will hopefully know how to help them with that as well. And I think that it's such a relationship that develops so it really becomes a team between you, between the person with advanced ms, between everybody that is, you know, involved in their care and including the carers, the loved ones. It's really about making sure everybody's included to make sure that we are managing, you know, the symptoms for the person with advanced Ms. In the way that they want, in a way that's important to them, but in a way that also ultimately helps them to live better with their symptoms.
- [53:01]
B
Yeah, I love what you're saying that you sort of looking after the family and they loved and the carers as well because sometimes the carers get forget gotten in this, don't they? And it's still very important for them and their mental health and well being to sort of be looked after.
- [53:20]
E
If you're not looking after the carers and the loved ones who support people with advanced ms, you know so well and they know, they know their loved ones so well and they've been on the journey with them throughout their Ms. So you know, if you're not looking after them then it, you would worry about the outcome of this for them as well. You know, it's really important. It's really important, you know, often that they don't always understand what is happening or why it's happening or you know, there's frustrations within the system. So I think to be able to have a link, I tend to be a link for a lot of my patients, you know, that I always say to them, if you're worried or you don't know who to contact, contact me and I will either follow this up for you or I'll be able to advise you what to do. And often I feel, because people with advanced Ms. Can become very disconnected by not being able to get into hospital because it just becomes too much and it's too overwhelming. So then they lose those connections within the hospital. So part of my role is to connect that back up again so that they have that access. So for them I'm able to access their neurologist, I can contact them on their behalf. You know, I can contact, speak with their Ms. Nurses, physiotherapists, OTs, the speech and language therapy teams. There's so many people that can be involved in care that actually for people with advanced Ms. And for their loved ones or carers, it can feel very overwhelming to think, well, I know that they've got all these appointments but I don't know who's dealing with what or what is important because often I can go in and want to make 10 referrals for them, but that can be too much. So it's about making a plan to know what's not going to overwhelm them. But also the link is really important, me being their link. I think, you know, just them knowing that they can contact me and I can advise them or follow it up, I think just takes that burden of responsibility away, which can be really difficult because I think if you're looking after somebody with advanced MS, a big responsibility. So knowing that you can share your worries and your concerns and have somebody to reassure you, I think it's really important. And I think that's a really important part of my role.
- [55:55]
B
That is absolutely amazing. I think because you hear a lot of people sort of saying the problems with a bit of disjointed services and not, you know, one department doesn't know what the other department is doing. And to be that sort of person in the middle to, to help the people with Ms. To figure out what's going on, I think it's so important.
- [56:18]
E
Definitely. And I think that coordination of care I think is vital. It's vital especially if people become health bound. Another part of my role as the advanced Ms. Champion is to review symptoms. Often people, Ms. Symptoms have not been reviewed for many years. So it's about getting an up to date assessment and looking at their medication because often they will still be on medication that they were prescribed years ago that might not be effective anymore. So reviewing that and often as the Ms. Symptoms advance, you have to keep looking at the management plan because that management plan often has to change. Then what may have been working really well for somebody with Ms. Years ago will not be working for them anymore. So it's making sure that they keep having that continuous up to date assessment. And then when we are changing things and putting things in place, it's about having that ongoing assessment to make sure that it's working for the person with advanced ms, making sure that they're happy with that plan.
- [57:27]
B
That makes sense. Because there must be so many different medications that might interact with each other and making symptoms worse or better. Better. So it must be very confusing.
- [57:39]
E
Yeah, absolutely. And a lot of Them can impair cognitive function. So if they're struggling cognitively or with fatigue, it's really important that we have a look at their medicine to see if this is potentially affecting that. Also to make sure that they're sleeping, because many people with advanced Ms. Won't be comfortable at night or their symptoms will affect them more at night, that will significantly impact them throughout the day. Sometimes it really is about look. It means looking at their whole day and their night and finding out when they are affected worse or by their Ms. Symptom and then looking at what we can do to help with that.
- [58:20]
B
Have you got any good tips for good sleep?
- [58:22]
E
I think position is really, really important and I know that the physiotherapists and the OTs are wonderful and great at looking at sleep systems. So I think if your patient is uncomfortable at night, it can add to spasms and spasticity. Also, another thing that significantly impacts people sleeping at night is when it's nocturia, when they're having to get up to consistently pass urine. And it's looking at managing that symptom better for them so that they can get a better night's sleep.
- [58:55]
B
Brilliant.
- [58:56]
E
They tend to be the main thing. And pain, pain at night keeps a lot of people awake. So it's about making sure that we're managing this effectively for them.
- [59:08]
B
Pain management is so important, isn't it? And complicated.
- [59:12]
E
So important. And, you know, chronic pain is so difficult to live with. So really helping people to. To manage that is just so important.
- [59:24]
B
Now, you mentioned speech and language therapist, but there's quite a lot of other people that are involved. And I'm gonna say, when I started learning about advanced Ms. Myself, there was a lot of services I didn't know were involved in this. And people might not even know that they do exist. I mean, could you tell us a little bit about some of the services that are involved?
- [59:48]
E
Yes. So I'm lucky enough to work in an area where there's a huge amount of services actually that can help with people to manage the symptoms of advanced Ms. There's many that I communicate with and refer to on a daily basis. And this can be from neurologists who are just vital to advise on the management of symptoms or medication. There's the Ms. Nurses who generally have had a historical relationship with the people with ms, so they're able to give you a good history and background. There's a neuro rehab team, speech and language therapy team. There's adult social care, social workers, chc. There's the assisted controls department, which I refer to quite a lot to enable people to keep their independence. There's the neuropsychology, ophthalmology, palliative care team, safeguarding teams, continence team, urology, and in St. George's where I work, where I'm very fortunate to be able to attend a week, a meeting once every two weeks with the neurologist and the urologist. And I think because bladder symptoms and urine infections are so significant in advanced ms, along with spasticity and spasms, so I'm able to attend a meeting once every two weeks with the neurologist and the urologist to discuss any patients who aren't able to get into the hospital so that I can get advice on how to help them manage their symptoms. So the network out there that I rely on is huge and I really do rely on these teams to be able to guide me. We also are really lucky, where I work, to have a spasticity outreach team. So we have a consultant, physiotherapist, spasticity practitioner who will come to a home assessment with me so that we can assess somebody's spasticity and she can administer Botox if required. So, again, it helps to manage people with advanced Ms. Within their home to better manage their symptoms so that they're not having to come into the hospital.
- [62:15]
B
If people who are listening to this don't have access to an advanced Ms. Champion, if they wanted to be referred to things, can they go through their Ms. Nurses? Do you know?
- [62:29]
E
Yes, absolutely. Your Ms. Nurse is always a great link to have. You know, they have so much knowledge and expertise and they'll be able to advise and guide you. And also, if you're not able to make contact with your Ms. Nurse, always contact your gp. The gps that out in the community, they generally know their patients really well and I think it's about contacting them or anyone that needs to advocate for somebody with advanced Ms. Contact your GP if you're not sure who else to contact.
- [63:04]
B
Brilliant. Thank you so much. Now, if you are someone who have got advanced Ms. Or you might think you have advanced ms, I guess it's not always clear, is it, if you have got it or not. But what can you do if you are struggling to get help with symptoms?
- [63:25]
E
I think if you're. If you're struggling with your Ms. Symptoms, one thing I would advise is I think sometimes it's really difficult when you feel that you're struggling and that you're not knowing where to go to help. So, again, I would Encourage you to tell somebody, somebody close, if you're not able to contact anybody yourself, to make sure, even if it's a carer, Carers are amazing, you know, and they can contact the care agency and the care agency will know how to contact people from there. And if it's that the care agency contact adult social care, what I would say is that you have to reach out to somebody, somebody who can advocate for you always. Again, I would say your gp, the GP is really good for sending referrals. And again, the Ms. Nurse, the Ms. Team at your local hospital. So you can always contact your local hospital and ask for them. If you've lost contact with your Ms. Team, make sure you contact your local hospital and ask for them to get the. Or put you in contact with the Ms. Team and somebody can assess you from there.
- [64:36]
B
And will that work the same for carers if they are worried about their loved ones?
- [64:44]
E
Absolutely, yeah. So please, anybody, or if you know somebody with Ms. Who is struggling, I would always contact to get advice. So obviously, you know, there is consent involved. But if you know someone who is struggling, I would always contact the GP for advice or contact your local hospital and contact the msd.
- [65:07]
B
Those were all my questions. Michelle, thank you so much for chatting to me today. It's been very, very interesting. You do a fantastic job.
- [65:16]
E
Thank you.
- [65:17]
B
I. I loved hearing Mark and Jen and Michelle talk about Advanced Emmas. I feel like it's. It's something that I've come across this a few times, especially on. On our Facebook group, but meeting people as well that are very frustrated that it's not spoken about and I can understand that it can be a scary topic to listen to, especially if you're new to Ms. You know that this is still a rare form of Ms. It does not happen to everyone that has Ms. By any means, but the people that do live with Ms. Like this do feel very neglected and quite often they sort of. They've fallen out of their system and they don't, you know, they feel isolated. So I feel like this is, you know, this is so important to talk about this and it certainly is something that we've seen discussed a lot in the advanced Ms. Facebook group that we created. And I feel like, you know, for people who are affected by it to join in and have someone to chat to and just know that there's someone else out there that are in a similar situation. So important.
- [66:31]
A
Yeah, definitely. And I think actually talking to Mark and Jen and just hearing their stories really opened my eyes as well. And you know, life can be so different content for people living with advanced Ms. So, yeah, that was really powerful.
- [66:45]
B
Yeah, yeah, I, I think it's, it's really important to, to, you know, when we talk about these things, but actually meeting the people that are living with it, it's a big difference. And I think, you know, chatting to Michelle, I loved how extremely passionate she was about her work and sort of really talking about what a privilege is to be let into these people's homes to talk to them and how much you sort of learn from just being around people with advanced Ms. So I think it's, we need to keep on talking, we need to keep on connecting people with each other so they don't feel isolated, I think. And hopefully this podcast is a good place to start and let's hope that we can keep the momentum going and that these people will feel less isolated.
- [67:38]
A
That's right. And if you do have any questions about advanced Ms. Or any aspect of life with ms, we are here for you. So you can reach our helpline, which is available from Monday to Friday apart from UK bank holidays and that's between the hours of 10am to 4pm Outside of those times, you can of course leave us a message and we'll get back to you as soon as we can. The number is 0800-03-23839 or you can email us at Ask.
- [68:13]
B
And you can also find us in the social network world. We are on Facebook. As we mentioned, there is a group for people with advanced Ms. On there. We also have another Facebook group. This is called the Ms. Trust Facebook group. We also have a page on Facebook where you can find all the sorts of of information from us and, and news and. And when the new podcast comes out, we are also on YouTube, X Tik Tok and Instagram. This podcast you can find anywhere you normally listen to podcast, you can go to our website and listen to it directly there as well. And please do get in touch and let us know what you thought of this episode and what you would like us to talk about in the future. And please do give us a subscribe as well. And if you have time for it, we'd love a review as well. If you have a story to share with us, you can get in touch as well, either via social media or you can email us@commsmstrust.org.