How do you get the best out of your MS Nurse appointment?

If you’re not sure how to best prepare for your next MS Nurse appointment, this could be the podcast for you.

No matter where you are on your MS journey, talking about your condition can bring on a wave of emotions. Your mind is likely to be brimming with questions and points to raise.

Add in long NHS waiting lists and squeezed appointment times, and it might feel as though you’re facing a steep challenge.

When your appointment does come around, how can you make the most of your time with an MS Nurse and avoid information overload?

Our podcast guest, MS Trust Lead Nurse Specialist, Dr Lou Jarrett explores some helpful tips on how to best prepare for your appointment. 

Learn how to build long-lasting relationships with your MS Nurse, what questions to ask and what to do whilst you’re waiting to be seen.

Finally, we'll touch on why the MS Trust is on a mission to train MS Nurses in the UK.

Episode notes

• Making the most of your appointments - information from the MS Trust
• Questions to ask health professional - information from the MS Trust
• MS Trust Helpline
• The Big Give - fundraising campaign from MS Trust
• Supporting the MS Trust - information from the MS Trust
• How we train and support your MS health professionals
• Patient initiated follow-up (PIFU) - information from NHS
• MS Trust Facebook Group

Transcript

Nick  
Hi, everyone. I'm Nick.

Helena  
And I'm Helena. And we both work at the MS trust the charity for people affected by MS in the UK. We are here to help you make sense of MS.

Nick  
Thanks so much for joining us on our podcast, multiple sclerosis breaking it down. Today we've got a bit of a different topic from our last episode where we looked at preparing for a neurologist appointment. Today, we're going to talk about how to make the most of an appointment within MS nurse.

Helena  
So, we thought this would follow on quite nicely after talking about how to prepare for neurologist meetings, maybe we need to talk about what's the difference between these two types of meetings? So yes, now it's the nurses turn. Yeah,

Nick  
so, if you're thinking like I've just listened to the last episode, I know how to prepare for that meeting, I don't need to listen to this episode, hold your horses stay right with us, please, because it's specialist nurses and neurologists fulfil two very different roles. So, in terms of a nurse today, so we're going to be thinking about what they can offer. So, they can help you have information, direct support, they're probably going to be the main point of contact for you as a person living with MS. And they'll also be able to offer, you know, clinical advice, they might be able to connect you with different services. So, such as you know, physiotherapist, or the doctors say seeing your nurse gives you that opportunity to make those connections, to ask them direct questions, talk about your treatment options, and help you manage MS.

Helena  
The MS nurse, his role is extremely important in the sort of the MS Health Care Team, where you meet them kind of like the hub of everything, really. But we are aware, as with neurologist appointments, that people might struggle to get an appointment with their nurse. Or if you're newly diagnosed, you might have to wait some time before you get to see your first appointment. I know we're talking a lot about how the NHS is struggling now. But I think I was you know; I was diagnosed back in 2007. I still had to wait, I think about three months before I got to see my nurse that first time and you know, you're bursting with questions by this. So, I think this episode will be really there for you to help you kind of think about what you want to say that first time. But if you've already diagnosed with MS, you might have had MS for years, this is still relevant for you.

Nick  
Yeah, and let's not sugarcoat the situation Helena like, we know, the NHS is really facing some huge challenges right now. We know that there are going to be lots of people in the in the same situation that you're in of waiting months, if not sometimes 12 months or longer for these appointments. So, we know that people are dealing with these issues. So, you know, we're aware of that. And hopefully today, not only will we you know you, you'll get some ideas of sort of what to ask your MS nurse when you do finally get to that appointment time. But also, hopefully, we'll have some helpful ideas that you can do sort of whilst you're waiting for that appointment and in preparation for that appointment, too. And I think also we'll look at the differences between the nurse and the neurologist appointment. And we'll think about, you know, what you should ask your nurse that maybe you wouldn't ask your neurologist and vice versa, how you can really connect with that person and build that long term relationship over the course of your journey to so, so important.

Helena  
And well, I think we've got the perfect person that we're chatting with today as well. So it's long time, MS nurse, Lou Jarrett, when we were asking our colleagues who should we talk to you for this we want to talk to an MS nurse has been working for a while everyone said Lu. And she's worked as a specialist, MS. nurse, for a long time. But she's also helped us out with training new nurses. So, we'll be talking a little bit about that as well.

Nick  
Yeah, and also dropping in later, Helena. We've also got Erica, our colleague from the MS trust, so she's going to talk to you later and she's going to talk a little bit about what we do at the MS trust to support MS nurses in the UK and other MS Health Professionals. But I think first Helena we should probably jump in with your interview with Lou. So, without any further ado, let's jump in.

Helena
 I am here today with Lou Who is a highly experienced MS nurse who knows all about the MS nurse thing. Before we start Lou. Would you mind just introducing yourself and tell us a little bit about who you are? 

Lou
Oh, yes, thank you Helena. Thank you to the MS. Trust for asking me to join you today and to talk about MS nursing. So, who am I? Well, I've got over 35 years, I think is now in working in neurology, and predominantly with people with multiple sclerosis. So initially, I was a rehabilitation nurse, then I moved into being a spasticity specialist nurse. And then for the last 12 years, I've been a MS nurse specialist. So, and during this time, I've also studied, and I've done a PhD looking at my role as a specialist nurse. And I've published and right now I've repurposed my time from the NHS, and I am now working with spending some time working with the MS trust training new nurses and new health care practitioners in MS. So, with all about experience, that's why I'm here today to talk about what MS. nurses do.

Helena
 And it's exciting to have you helping us with the training as well, because obviously, all that knowledge that you've gathered over the years it's invaluable. So, we're very excited to have you working with us.


Lou
Oh, good. Thank you.

Helena
Now, today, we're here to talk a little bit about how we can prepare for MS nurse appointments. And the previous podcast we did we talked about how to prepare for a neurologist appointment. So, my first question is actually, what's the main difference between a nurse appointment and the neurologist appointment? 

Lou
Yeah, I think that's a really good question, Helena. I think to do that, though, I think I'm gonna go back and let us think about what actually happens when a referral comes in. So very often, a GP will refer a person into a neurology department in the NHS, asking for a review. And at that point, the person will see a neurologist. And the neurologist is then starting the process of a diagnostic route, really what is causing that person's symptoms. So that will involve a neurological examination, perhaps some tests like an MRI, and perhaps some blood tests as well. So, at that point, those appointments are all about trying to understand what is happening to that person. But once a neurologist starts to get an idea, they might then refer to a specialist nurse for more support or more information. But there are lots of neurology specialist nurses like Parkinson's, motor neuron disease, and of course, for us multiple sclerosis. But I also want to say that there are some services where nurses cover several conditions. And so, it's not uncommon for a person with MS who may be looked after by a neurology specialist nurse.

So, but let's think about it. So, from this, we can see that the neurologist is very much involved with the diagnostic process. And the MS nurse role at that point is to really focus on ‘how is the person now going to live?’ How are they going to manage symptoms whilst encompassing now a neurological condition?

And more simply, I guess I say, an MS specialist nurse is there to journey with the person with MS. So that's like those initial appointments, but then we get the follow up appointments. And for a neurologist, they are very much using those appointments to reassess the person's neurology, so maybe doing another neurological examination and tests etc. And they will then make recommendations. And that might be to do with some rehabilitation strategies, or it might be to do with medication. So, an MS nurse follow up, we'll look at those recommendations with the person with MS. And think about again, how can they be best incorporated into the person's lifestyle. And also, they will be assessing the person's symptoms, because sometimes, neurologist might not pick up some things and sometimes the nurses might not pick up things. So, it's very much a joint effort, really, and the MS nurse is very much a link between the neurologist but also the community teams and the GP. So, I think if we really now just specialty you know, look really at the MS nurse specialist’s role. I think the ongoing appointments are really important. And that is mainly because people change, we all change as time goes on, and how we want to manage our MS might change. And also dare I say it, but we all age. And so, you know, ongoing conversation to the MS nurse about the way you want to live your life over time is also important. And you know, and sometimes it's where you are in your life's journey with MS. And I often think about, and I know our team gets very excited. And because sometimes these events are very positive. For instance, we really get excited when somebody's we're welcoming in a new life to a person with MS and they have a baby. And that's particularly exciting if it's been quite a difficult process, timing their disease modifying therapy and their treatments. So, it's, as I say, We're journeying with people. But in addition, how MS symptoms affect a person's life is really unpredictable. We all know that with MS. It's very unpredictable. So again, reviewing your management strategies over time can be helpful.

MS. Nurses have been described as experts in MS conductors of care, being able to signpost individuals, and we do do all that. But I think there's something also much more about being with people and being available to those people to discuss things.

As I practice, we're always aiming to build trusting relationships to enable the person with MS to make choices about how they live their lives, not how we want them to live their lives. And I think I am smiling at this point, because I know often it seems or it's it's actually been said that nurses just chat with patients and I, I always bristle a little bit because we do more than chatting. And at the recent development module, we discussed that MS specialist nurses don't just chat with people. But what do we do? And we came up with this list that I thought I'd share with you. We listen, we assess, we measure, we review, we educate, we have we advise, we monitor, and we support. And I think when we looked at that list, we really thought of thought it's no wonder we can feel rushed sometimes because the MS nurse’s role is pretty multifaceted, really.

Helena
Yeah, it's amazing. I think I've always appreciated it. I see a few different nurses. But I think that most of the nurses that I've seen at my clinic, they always like to follow up with emails as well. So sometimes if I haven't done my part, when I need to sort of, I was going to, to try and get myself referred on to the different thing, that they've dropped in an email and through me and said, Have you done this yet? And then I was like, oh, no, I need to do so. It's nice. It's that ongoing conversation that you have with the nurse? Which the neurologists, you just tend to see that once a year. It's not. I've never had like that kind of ongoing conversation with a neurologist as I do with the nurse.

Lou
 Yes. And I think yeah, that's a good way of putting it.

Helena
So, a lot of people that listen to this podcast are completely new to MS. They might be in the process of getting diagnosed. And they we've seen so many people recently on social media that you're just asking, I'm seeing the MS nurse for the first time. What do I need to do? How can I prepare for this? And what should I expect? So, I think maybe we could talk a little bit about that first initial point. 

Lou
Yeah, yeah. And I really understand that because, you know, if you're new to health care, really sometimes what you know, you've seen the neurologist, you've got a diagnosis why on earth some people walk in so one after I'd need to see a nurse. So, I think the first thing I say is the what the opportunity that said the nurse does is giving you time, and time to explore, you know, what really, Is this MS? How is it going to impact on me?


Now, I know that if you're feeling really vulnerable, the last thing you probably want to do is think about MS and what it might be doing to you. So I often start these appointments with, you know, we can talk as much or as little about MS as you want, and try and be guided by the person, because everybody will be in a different place with their MS and where they're at and what they want to talk about. And as a nurse, really, it's about listening to the person, as I said earlier, and really trying to understand what they want to know. But as a minimum, what I like for them to leave the room with is contact details and the contact details of their MS nurse and how they can get hold of them.

But you know that all that said, I think mostly in these early appointments, people do start to talk about their MS. And they do start to open up a little bit. And I think importantly, MS. Nurses have knowledge and expertise. And we can unpick any questions that you're thinking about or maybe the neurologist said something that doesn't quite add up or you don't understand what they were meaning. So it's a real time to try and unpick anything that isn't quite making sense to you. 

Helena
How can people prepare for these meetings? Yeah, because it's quite, you know, there's a lot of things and like you said, there might be a lot of emotions that you might not want to talk you might want to say everything you know, how can we because it's a bit limited time. I don't know how long it is normally, a first appointment.

Lou
Yeah. Now this is when I don't really, you know, I have to be careful because I know sometimes people are very restricted by the time that they can have. So, I'm going to say this is the appointment that I say to nurses give the most time to because it's probably the most important one to start building relationships. And it can't really be done in 10 minutes or half an hour, I think when we're thinking about what we're aiming to do, it's about being supportive and educational, and that the person knows the next step in their treatment. And, as I said, the contact details, but how can they prepare? What do I really want from them? What I really love is when people come in with a list, yeah, they've come in with a list of questions or things that have just not made sense. And I don't know any other nurse that, you know, doesn't mind somebody coming in with the list. And you know, even I think, when you then leave, we know that we've tried to answer the questions that really matter to you. So, it can just make the whole thing feel successful, really. But you know, I think I was listening to Dr. Straukiene’s podcast, too, on preparing for a neurology appointment. And she mentions thinking about whether you want to take somebody with you. And I think that's really good advice. Because, you know, you might want somebody to just share that experience with you, but also to listen, and perhaps remind you of what was said, I do know, there's some restrictions still in some hospitals about how many people can visit, so might be worth checking. So, if you do end up on your own, you can always ask if you can record the session, so you can listen to it later. Or I know I've got a reputation for writing very long letters. But that's because I'm trying to summarize what we've talked about. And also, then hopefully, it becomes an education tool for the person in the longer term.

So, I think preparing is all about it's an appointment for you, as well as it is for further MS. nurse getting to know you. 

Helena
That's a really good way of looking at it. I think when I was first diagnosed, I had to wait a few quite a few months before I got to see my MS nurse. And I do remember speaking to her on the phone, and she said, every time you get a question, carry around a pen and paper with you. And even if you're standing in Tesco or whatever, write it down, and then you bring that whole list to me when I see you. And that's what I did. And I don't know if she regretted saying that to me because it was a long list by that time. But it did help.

Lou
Honestly, we do love a list, honestly.

Helena
That’s good. Are there any questions that you can't answer?

Lou
I really like that question. So, I think I wouldn't want a person with MS to feel restricted in asking any question, because no question is a stupid question. If it's something you want to know, so I really encourage people to ask their questions. But just a little caveat there is that the MS nurse may say to you, I don't know. I don't know the answer to that. But I will find out for you. And I'm certainly when I'm sort of teaching new nurses, I say it's so important to be honest, because you're trying to build a rapport with the person that you are going to be working with for perhaps many years. And so, trust is really important. And honesty is the basis of trust. So yes, please ask any question. But be aware that, you know, it might be that the person is going to say no, I don't know. But I'll find out and get back to you. 

Helena
So, as we know, the NHS is struggling a little bit at the moment. Well, it's on the news all the time, isn't it? And because the waiting list to see your health professional is so long, where can you turn to with questions while you wait? 

Lou
Yeah. And, you know, I just want to reassure people that we are very conscious about the waiting lists, and there is a lot of work going on within the NHS to address those. However, I'm not sure really focusing on them helps us and I know the government and the media are constantly talking about waiting lists. But for me, I think they just provoke anxiety sometimes. And what I worry about then is that people with MS think, Oh, the service is so busy, I won't, I won't contact them, I won't ask for help. And that's really not what we want. So, I think the key thing for a person with MS is to know how their MS nurse service works, and how to contact them. So, most MS nurse services will have appointments that we're used to like face to face or virtual, with a video or they might do a telephone appointment. But in addition, they also have an advice line where you can leave a message and say, Oh, could somebody chat to me about this, and the nurses will get back to you. And I think that's a really valuable way of just keeping in contact with your MS nurse. And I think one plea from the MS nurse is around I know is that if you do leave a message can you just highlight a little bit about what you're leaving a message for? And in particular, if you're feeling like you're having an increase in symptoms that might be a relapse and say that or if you think you're reacting to some medication then let us know that.

Because I think it's really important when we're trying to tie us the calls to know a little bit about what, what each person is wanting us for. And I think also to say that we work really closely with the community teams, GPs, community rehab teams, physios, OTs district nurses. So sometimes it might be that we facilitate somebody else to help you with your question that perhaps be more suitable.

But all that said, you know, MS services in the NHS cannot do all this work on their own, and support of charities like the MS trust is invaluable. And they provide advice lines, podcasts like this, and written information. So sometimes, answers to people's questions come from outside of the health care arena. 

Helena
Yeah, I think that's so important. And you really hit on the nail there with, I think I'm guilty of that. So you know, sometimes you feel like I should maybe let the MS nurse know about this, or I could should call my GP, but they're so busy, maybe I shouldn't, and you sort of have the whole conversation in your head with someone, then you kind of convince yourself that nah, but actually, you should probably do. Yeah.

Lou
Brilliant, because sometimes the conversations are really short. They're not long, but yeah, then you can get on with your life. And that's cool. 

Helena
No, no, definitely, I think there's been a few cases where I've just sort of, I just have a question, dropped an email, and then got it back and said, I don't think you need to worry about this. But do this in case you do need to, you know, if there are any issues, and then that's calmed me down, and then it's like, okay, and that was, you know, so yeah, definitely. Don't. Yeah, I think it's really important not to be too scared about the all the media hype around it.

So, we asked this to Dr. Agne when we asked her as well. But how can you stay as healthy as possible while you're waiting for an appointment?

Lou
Yeah, I think staying healthy. And you know, what I should be saying right now, it's what we all should be doing this. And it’s, you know, doing exercise, good diet, don't smoke only drinks, within acceptable limits. But my response to staying healthy is we need to think about the long-term sustainability. You know, we don't want to have short, short-term gains. And individuals with MS may need to work towards goals. And I think it depends where you are in your MS journey, if I'm really honest.

For instance, if you're a really heavy smoker, and you've just got diagnosed with MS, this is one of the most stressful possible periods of your life. And then a very well-meaning MS nurse comes along and says you need to give up smoking, it's probably not going to be the best way to start a relationship or going to have lasting effects. So, my approach is Yes, I have to share that with the person that smoking is not a good idea. However, what I often do is say, Look, can we come back to this at a later date, when you might be in a better position to think about how can you give up smoking because my aim again is about being honest. But it's about working in partnership and developing that trust and layering and tailoring education as we go along.

You know, I think in healthcare, we've kind of developed this what I call an urgent expectation that everything's got to be done now it's got to be done immediately or even yesterday and sometimes it doesn't help us you know, it doesn't help us make achievable aims or goals or achieve things and I think if we really are trying to have a longer term benefits then and we're trying to change deep rooted habits sometimes we need to take time and just not rush at it I think it's my thought.

Helena
Yeah, and it's quite interesting what you were saying there about smoking because it in the same way as like stress eating or drinking you know all these things when you are dealing with maybe all I need to talk to someone out why am I having to wait for so long and then it's easy to rely on these crutches isn't so yeah. And then feel guilty about it. And then you end up in a bad circle of beating yourself up. But they often say MS nurse is a marathon not a sprint. And I guess that's the way to look at it with health as well.

Lou
Oh yeah, that's a good one. Yeah, that's kind of what I'm saying, isn't it? Yeah.

Helena
So, here's another one that we see happening now. And again, people who might not have seen a MS nurse for a long time maybe for one reason or another. I mean, sometimes you fall out of the system, sometimes you move, sometimes you've been so well that you have felt like no I'm not going to bother and whatnot. But if you're listening to this and you haven't actually seen your MS nurse so you don't even know where to find that MS nurse should you try to get an appointment?

Lou
‘Course I'm going to say yes to that aren’t I? Because I really value what MS nurses do!

But I think, if I'm really honest, in reality, it's down to the individual choice whether they want to see an MS nurse or not.
And just because I heard you say, there, you might not know how to get one, but you're the MS trust to a really good website about MS services and in your locality. And you can find where your nearest MS nurse is. So that's a really good part on the MS Trust website.

But you know, sometimes people come into clinic, and they say, Oh, I don't know why I'm here, I've got nothing to say nothing's changed. And then we start to talk. And I start to assess, and I listen to what they're telling me, and I listen to how they're managing. And then we start to see some hidden symptoms, such as maybe fatigue, or bladder management issues that in some ways they've been just putting up with and getting on with, yet, there are some strategies that we can think about and talk about, that might actually help them manage those symptoms more effectively. So, you know, no appointment is ever a wasted appointment, because often we will find that there are things that you may be able to incorporate to live well with your MS or live a bit better, maybe.

I just want to take this opportunity, though, to mention that the NHS has brought in a new system, but not universally. So, it might be worth checking out if your service is doing this, but it's called PIFU: patient initiated follow ups. Now, this is when it sounds really good in practice, where if you want an appointment, you ring and ask for it. But you won't be sent regular appointments. Like in the past, we've all been given annual appointments or something. Now, I think Helena these will work really well. For some people with MS. I really like that. I'm slightly cautious about those people think, Oh, I won't bother them. Oh, I'm on the right, I'm managing, you know. So, I suppose my little plea today is it's just to make sure you check what your NHS service is doing. And you know, just don't always think you're going to be a bother, nobody's going to be a bother. If you feel like you want to talk to her MS. nurse, then please do that. 

Helena
Yeah, I think it's really important. I think I fell between two chairs where they sort of moved the nurses from the hospital, I was asked and then moved them out into the community. And I was very much like that I sort of didn't follow up with trying to find an appointment. So, I sort of, it just kind of fizzled out. And then suddenly, I found myself without any kind of MS nurse and I realized, you know, working at the MS trust, I sort of thought, You know what, I should probably be seeing an MS nurse, and then and now all the way through COVID. And all that sort of was still you know, had kept in contact with email or sort of telephone, annual meetings. 

And I think it really does help even though things haven't changed as much like you said, there are things that you don't think about. And when you actually get asked the questions, you sort of go, oh, yeah, yeah. And I think it's just it's since we are having to manage MS up and down. So, I think it's just yeah, it's just nice to know that there's someone in your corner, isn't there? 

Lou
Yeah. And I think sometimes that's you've just reminded me of some research that I remember reading that Barbara Patterson talks about people who live with, well, she talks about illness, but people who live with MS in the foreground or with MS in the background. And I think it's an appointment kind of brings the MS to the foreground for you to focus on it, when mostly you're living your life and getting on with it. And MS is not so in the forefront. So yeah, that's my appointments are important, I think.

Helena
That's very true. And so finally, my final question for you. We're going to chat to you a little bit more later on. But my final question is, what advice would you give to someone who's just found out that they have MS. 

Lou
It's a really poignant time in somebody's life, when they get a diagnosis and a diagnosis like MS. Which,


and I think there will be a lot of emotions. And my, although I've already raised this issue of time, I think it is about giving yourself time, time to, you know, think about who are you as a person? And how have you dealt with things in the past? So, for instance, are you somebody who wants to embrace all information about MS and wants to get out there and get all that knowledge? Or are you somebody who wants to delay learning about it? And yeah, there's no right or wrong, I really must stress that. But whatever is your preferred way. It's important to acknowledge that to yourself, and then try and plan to speak to someone like an MS nurse about that so that you can plan going forward in an informed way, and informed way even if you don't want to know too much at that point, but you've made that decision and chatted it through with someone.

So, I think talking to an MS nurse at this point is really valuable. I say give yourself time as it's a bit of a paradox when you get a diagnosis, because although that's happening to you, and you start to tell people, and you think they're going to be all supportive, and often what happens is, you end up having to support the people around you, because it's quite a shock to them too often. And I think sometimes those you think might be the ones who are gonna give you the most support are actually the ones you end up having to support. So, I say that because I want you in the best position you can be in to go move forward with your MS and to, you know, incorporate all those important people in your life in the best way.

But you know that all sounds a little bit somber? Doesn't it? And I just want to sort of say, look, at the moment in the MS world, it's very exciting, because we've got more and more treatments than ever, that we've had to manage MS and the symptoms. And whilst we can't take away the diagnosis, and we know that your needs will change over time, the MS community worldwide is striving so hard to work towards strategies to help you manage MS or new treatments. So, you know, because we're all aiming that people with MS have advice and support to manage their MS symptoms. And one of my often statements, I have quite few in my little repertoire, but this one is, I say to people: MS shouldn't stop you doing things. But you might just have to do them in a different way. And you're MS nurse is a good person to start those conversations with. 

Helena
That's really good, solid advice. I love that.

All right, so we're going to take a tiny little break, but don't go away because Lou will be back. 

…

Now, if this was a commercial podcast here is where there would be an advert break. But as you know, we're charities we don't do that. Instead, we would like to take this time and opportunity to tell you about our fantastic resources for people with MS. Yeah,

Nick  
so you can jump on over to our website. So that's MS. Trust org.uk where you can see lots and lots of helpful information and resources for people affected by MS. And of course, on there, you will see lots of information from our topics from this podcast than the previous podcasts, which is to make the most of your appointment. So if you head over to the search bar on the website and just type in appointments, you will get to a few different articles on how to best prepare yourself for that time with your neurologist with your nurse, with your therapist, with an allied health professional, and also kind of some differences in terms of in person and virtual appointments, what's likely to happen at your appointments, what questions to ask. So, you can find lots of that information on our website. But we'll also put some links in our show notes below too. So, make sure you check those out. But for now, let's jump back into our interview with Dr. Lou Jarrett.

Helena
So welcome back. Now we're going to continue to chat to Lou. But we also have another guest that we want to bring on. And this is our colleague Erica, who works in our Fundraising team. And she's here to chat a little bit about what the MS trust does in order to help support the MS. Nurses. So, if we could bring her in. Hi, Erica. 

Erica
Hi. Hello.

Helena
Welcome back to the podcast. Eric has been on the podcast before. I'm gonna hand over to Eric now, actually. 

Erica
Well, Lou, I know that you've been MS. nurse for a long time. And I have seen firsthand how well respected you are within the team because MS nurse is flocked to you for information and guidance. But I just wondered over that time frame that you've been in the MS sphere? How have you seen things change as an MS. nurse? Yeah, it'd be quite interesting to get your insight on that. 

Lou
Yeah. I think, you know, if you say to me, has the MS nurse role changed? Yes, in one word, it has changed. But I think we really have to look at the whole context of how the world of MS has changed.
Because I think if you asked any nurse, has your role changed in the last 10 years? They're gonna say yes, yeah. But I think the word of MS has changed exponentially over the last 5-10 years, with new treatments and just how we understand what MS is, how we could manage it with strategy rehabilitation strategies, but also with the different drugs that are now available. You know, there's been an awful lot for us to learn.
And I think for every sort of, you know, as all of our knowledge has grown, the MS practitioner whether a doctor or nurse or an allied health professionals had to flex and try and think how can I bring all this information into my practice? How can I develop my MS services to incorporate all of this? And I think sometimes that's a real challenge. And I think certainly when you're deep in clinical practice, and you're trying to keep your service above your head above water in your service, it can be, feel really quite overwhelming at times. But the MS Trust has come into play here!



Erica
Yeah! How have you seen what we do, support you in your work?

Lou
Yeah, and I think you've been unwavering over the years, in your efforts to support nurses and how they work. But you too, had to flex and change how you've worked. And I think over the years, I've, you know, I've seen that you've run training days, then you there was the generating evidence in MS Project, the GEMS project, then the forward view document, and then now we're doing lots of health care programs. So, all of that has been really timely over the years, and really vital to helping us do our work in the NHS. But you know what, there's also been three constants. And I just want to put a call up for this, because these are also really invaluable. So firstly, is the MS annual trust conference, it's a two-to-three-day packed program, where practitioners can go and update their knowledge and skills. And, you know, that's such a short timeframe. So, if I'm an NHS manager, granting study leave, that's a really cost-effective way of sending my staff away, so that I've got a skilled and knowledgeable workforce. So that's really important. I think the second thing I'd raise is the development module for new MS practitioners. This weeklong course, with an assignment at the end, really is tailored towards practitioners in the first few years of working with MS. And it allows them to consolidate their knowledge, but also then be a springboard for developing their knowledge on for that. And you know, I remember 12 years ago, I did the course, and I did the assignment. I remember it well. But even though I'd been working in the field of MS was spasticity management, that course was really invaluable to me to just consolidate my knowledge, and so that I could move forward as an MS nurse. So, this ongoing development of new practitioners is providing MS services with an ongoing succession of MS expertise. And that's really, really important and you wouldn't necessarily get if you were just in the NHS. So, it's really important, I think, for the future landscape of MS care.

Erica
It’s so lovely to hear you talk about that!

Lou 
Oh, is it?  But the third thing you do really well is your ongoing provision of up-to-date information for people with MS. It's not just us. And I think, you know, in the world today, we're surrounded only by information, but it's really hard to know sometimes what to believe and what not to believe. And I think as a nurse or a healthcare professional, being able to direct people to charities that you respect to know that the knowledge that they're going to get there has been evidence based and it's researched, and that they're going to get compassionate support is really vital for us when we say no, you know, you can contact the MS trust they they're there for you is really important. So, I think the MS trust really continues to be dynamic and change and adapt. And that allows us as practitioners to work really well and be as effective as we can be. So, a real partnership!

Erica
It is so lovely to talk about that. I mean, I feel really proud of what we do. The development module we've been running for a long time. And it's just invaluable to see the knowledge building up from


early days and just how important it is. Knowledge is so key. I think that's one thing I've always got in with the MS trust, I can see it everywhere. That knowledge is so valuable, but we're listening to people with MS. And we're listening to the health professionals. We're trying to be the ones in the middle where we're trying to support both sides. And yeah, it's really, really lovely to hear you talk about it in such a strong way because we're very proud of our accredited training. It's all university accredited. It's very sort of gold standard level of training. And so yes, we are very, very proud and knowing that it's valuable and it's really impacting people with MS in such a proactive way is yeah, it makes all the hard work worthwhile. So definitely, definitely really good. And I know that you have an interesting day because, you I understand had an early bursary from the MS trust, as well. So, it'd be lovely to hear how it sort of started for you, and then how you've now come around and supported us with our development module, which is that training for new MS. Nurses?

Lou
Yeah. Well, I feel really privileged that the MS Trust has, you know, provided me with ongoing development over the last 30 years that you guys have been around. I've been there too. And I've been involved in the initiatives I mentioned before, and in particular, the GEMS that generating evidence in MS services. And so, the service I was in, I went from one nurse to two- and a-bit nurses, and an MS coordinator, because we learned the skills to collect data that we were then able to present to managers. So that was really vital and important and suited the caseload much better. So, people with MS were getting better services as well. But yeah, you mentioned the education bursary its way back in 2006. Now, but it was really a critical time for me, I was coming to the end of my PhD, but struggling to write it up. And I was, I looked at my role as a spasticity nurse specialist. And the bursary allowed me to work part time in the NHS, and to finish and write up my PhD. So since then, the skills that I've learned through that I've used in research, but I've also used it for publications. And now of course, I'm using it with the development module and marking the assignments. But all that sort of knowledge and skill has sort of led me to this point. So I feel really fortunate that I'm able to give back to MS practitioners, but via the MS trust. So that's really great for me.

Erica
I mean, it's lovely to hear the impact because we realistically, the bursaries, and all of the training, so much of it comes from our fundraisers, and it's just everyday people who are doing amazing things for us, and just putting their hard-earned cash towards all of this. So, it really, really shows how it can impact over a long period of time, you can train for one day, but actually the how many people you affect and it's also that ongoing knowledge, like you've said, the, the whole scene of MS has changed so much. So, using our DMD tools and, and everything that we've got there, we've had to learn as we go and keep up to date, but then we're able to keep the nurses up to date as well. And so that, you know, when you that sort of checking in with your MS nurse that you were talking about with Helena, I think is so vital, because there is, there might be that latest bit of knowledge that they've just been imparted with. And they you might not have seen or not be aware of because there's so much research that is incredible. And to be able to get that just from like a snippet of a little conversation with someone who has been given all the knowledge. Yeah, I think it's so invaluable, just every now and then just checking in, I suppose just to see if there's an update and of course, MS changes for people every day, as you've said, so, yeah, that's always really, really valuable. And it was interesting hearing you talk about the teams there around the MS nurse, because what we've seen is that we're getting other professionals join our development module and other end training courses. So, it's interesting to see how it's not just MS nurses I just wondered if you could sort of touch on that point.

Lou
Yeah, I think that's really exciting. Because if we think about supporting a person with MS, you know that their needs can be very varied. And often, we need lots of different disciplines. So, the doctor, the nurse, physio, OT, speech and language, I could go on, psychologists, there's lots of people involved. So, I think training together makes sense. And I think, you know, often, you know, if we're training together, we're understanding the nuances of working in a team and what each does, and that I think then enables us to engage better in practice. And then I think it fosters interdisciplinary respect, understanding, and most of all, you know, I think it allows us to move forward developing MS specific knowledge that has got different aspects from different disciplines that come together to make that knowledge and that's really powerful, I think. Yeah.

Erica
So finally, I just wondering about the if you could discuss the impact on MS services, having the opportunity of training via the MS trust, how it sort of helps to develop individuals into the highly skilled practitioners that we are seeing being put back into the NHS.

Lou
Yeah. And I think, you know, first and foremost, I think what's important is we can trust the training that the MS trust is providing, we all know that it's been considered, it's been evidence based or research based, and that it's impartial and that's, that is as current as possible in this current sort of moving of MS knowledge, but you know, it's up to date as we possibly can make it.

I think the MS trust partnering with Birmingham City University, has really, to develop degree modules has really, you know, strengthen the academic rigor. So, the MS practitioners are training not just to be part of an NHS workforce plan, but we hope they can be leaders and shapers of the future NHS. Now, why is that important? It's important because we need to keep MS at the forefront of neurology services, and at the forefront of what is going on in the NHS. So, I think that's really important. But likewise, for clinical practice, we need to develop researchers, and evidence-based practitioners, not just in medicine, but in nursing and allied health professionals too. And that requires a grounding in research methods. So that we're able to take forward research, but also evidence base through audit, so that we can continue to influence and advance clinical practice in MS care.

Erica
And I mean, everything comes back to the more informed the health professionals are, the more information they'll be able to sort of impart in the correct way for someone that is full of questions. And I suppose navigate that so that I think you can feel a bit of overwhelm with all the information. And I think you're sort of a wonderful place to go to for that sort of Breaking it down, Ah! Like the podcast! It is that kind of thing. Literally breaking down all those questions, all those things and seeing not just the diagnosis, but seeing the person as well and how they are living and helping them live in the in the best way. But you can only do that if you've got all the up to date, knowledge and the information. Otherwise, you're sort of fumbling around sort of doing your best, but I think, yeah, having that knowledge, and I can see the knowledge and the skill of the MS Health Professionals is just phenomenal. So very, very proud of the work. You guys do. So yes. Thank you so much for what you do. And thank you for coming back around and helping us with the training too. It's really, really awesome. Definitely. 

Lou
Thank you!

Helena
Just popped back in again, I love listening to you talk about that. It's so much passion, you know, it's I love anybody who talks passionate about their work. And it's it just goes to show like how important that educating the nurses is for people with MS. Because ultimately, we as people with MS want our nurses to know what's going on and have the sort of the latest knowledge and know about the research and anything that's changed. So, I think it's so important. And thank you, Erica, for coming on as well. I just wanted to ask you quickly, and because you mentioned that this, you know, in order to do all of these things that we're doing, as well, as you know, we're doing this podcast and information. We are, you know, helping fund some new nurses, we are educating the nurses. And we're doing these bursaries and things. That's a lot of money and you mentioned that it comes from the fundraisers because we don't get anything from the government or from the NHS, do we?

Erica
No, it's all coming so much from fundraisers and trusts and so forth. So, it just is it's so significant. Everything that everyone puts in, you know, we can't do what we do without our fundraisers. So that's why we absolutely love our fundraisers. And Fundraising is so important to us because it means that the more, we have, the more we can do. And being able to put something on like the annual conference and have the development modules where we can really have that high quality heavily researched, as we were saying, it's all evidence based. It's all down to research. And it is all accredited. And it's all down to our fundraisers. So, while Christmas appeal that's coming up from the 28th of November through to the 5th of December. It's just one week only. We have this exciting opportunity with the big gift, which is their Christmas challenge. And for that one week, we can double donations, which for a small charity like us, makes a big difference. And so, we have some wonderful pledges that have pledged some money, and we have the reach Foundation, you've given us some money, so we have a pot. And then if people are willing to add their Christmas donation to it, then they can donate, and they can unlock that much funding. So, in essence, when they give us 10 pounds, we can turn into 20 pounds. And the whole premise of the appeal is to try and feed it back into the training of those specialists, MS. Practitioners.

And that's the big thing, our whole premise was to try and keep embedding that knowledge to out the services that are there within the NHS, but we can't do it without our amazing fundraisers. So yes, from the 28th of November to the 5th of December, you may be hearing quite a bit about it, we will be pushing a lot on The Big Give, we are trying to double the impact that we are making and reach our targets. So yes, it'd be very exciting to see if we can get there. We've been we've got 11,000 pledges, so we're looking for a level of 11,000 to match that. And then that really, that goes into training. Quite a few nurses for us. So it's, yeah, it'd be really, really exciting if people can come on board, and really help make a difference.

Helena
So, if you're listening to this podcast, and you're thinking, well, you know, that's the spirit of Christmas and giving. Don't wait till December, but you know, do it now! Because it really makes a difference. So, say the dates one more time. 

Erica
So, the Tuesday the 28th of November from 12:00 (noon), and it will go right through to the following Tuesday at 12:00 (Noon), that you can put a donation for it. And in that timeframe, you can unlock the match funding. So, we'll get hopefully, we'll be just like smashing it and yeah, everyone’s gonna be so wonderfully generous. And then we have that where you can match up anything extra is bonus. But yes, it will be very, very exciting to see if we can, you know, when you're at a target there, hopefully, our wonderful MS trust community can come together and help us to get through that. And we can train lots more nurses so that they can impart all this knowledge. Yeah, no, just I mean, the impact that they have is far reaching the amount of people that they can connect with and give quality, time, quality knowledge. That's really, really what we want to do, we know that it makes a massive, massive difference. So please help us do that.

Helena
And please help share the messages that we will be putting out around this as well, it really helps to try and reach as many people as possible.

Erica
Massively, if you can't donate, please just share with as many people you can, and, you know, hopefully, tell other people that makes just as much of an impact is raising awareness and the knowledge and sharing all of that and make a big difference.

Helena
Thank you so much to both of you. I think this has been really lovely to listen to, like I said, there's so much passion from listening to I mean, you are very passionate talking about your job, but I've met quite a lot of MS nurses over the years and coming to conference. And there's so many that are so passionate about their job. And I think it's really, really, lovely. 

Ericia
And really truly care. I mean, that's what comes through isn't it really, really care and want to learn and want to be able to give the best to know for their patients? Definitely.

Helena
A big thank you. And yes, please, talk, speak up about the Big Give!

…


And we are back. I think Lou is like one of the most passionate people we've ever had on the podcast. And I do love anyone who's really passionate about their work, you know, it makes it, really sort of shows how important she feels like the MS. Nursing is but also, I feel like you know, we all know working here at the MS trust how important MS. Nurses can be for people with MS. And for people who don't have nurses, you know, people are frustrated, getting a times with nurses but, but we've heard some fantastic stories over the years how MS. nurses have helped people and I feel like you know, as an MS patient myself, I do feel like, I don’t know what I would do without the nurses really! 


Nick
Yeah, it was really good to talk to her, wasn’t it? I was really interested actually in the way that you know, she first sort of introduced the role of the MS nurse and she said the first thing that she would say to MS nurse is to really focus on building that relationship with the with the person with MS. And actually, you might be with that person for a long, long time. So, she said you know focus on that first before you get into all the clinical nitty gritty of the appointment like that's that the two people that connection, that's the thing that's going to be a long lasting, helpful situation for both parties. 

Helena
Yeah, I love that Lou was talking about bringing people along, that they were saying about how you bring your children and things like that because they do follow along the whole journey. And I do remember like when I had my first son that I sort of ‘umming and arring’ whether I should try and get the babysitter or something for coming in? And they were like, no, we want to meet him come bringing them along. And I thought, you know, there's just lovely because you do feel like that, because they want to know how you're doing after you know after having a baby and but then it's probably nice for them to see. See your baby too. Even if he was a bit shouty at that point. 

I thought it was really interesting what Lou was touching on there, but almost feeling guilty about contacting someone because you know that they're so busy. But I had an injury to my eye earlier in the year. And I when I first when it first happened, I thought it was optic neuritis. So, I did sort of contact the nurse. And it was great just to have somebody sort of chat to me and sort of ask, you know, how is it? What happened? What's going on? How does it feel? And then sort of advice me and maybe you should go to the optician, and they'll have a look. And then I've sort of, you know, fed back on what's going on. And then the in the end, it was not MS. Related, it was an actual kind of injury to the eye. But it was just great to sort of have someone to be there and support you through that. Because it can be scary. 

Nick
Yeah, absolutely. And particularly when you're early on in your MS journey as well. You know, you're as you say, you're likely to have lots of questions, lots of unanswerable, you know, points that the, you know, you've got worries about this, you're thinking about the future, thinking about your relationships, thinking about treatment. So actually, having that person that you can go back to have that relationship with, feel comfortable talking to, you know, whether that is online, over the phone or in person. Yeah, it's so important, isn't it?

Helena
And we have actually had the pleasure of recently attending that one of these training days for the MS nurses, didn’t we? It was a few weeks back now. And it's funny because I worked at the MS for a very long time. But this was the first time I attended one of these training days because it was quite curious to know what was going on. And, and because then MS is a tricky condition, then it's so varied, and treatment option changes all the time. And there's new research around so I think, you know, training the new nurses, as well as continuing training the existing nurses is very important.

And, you know, I would want my MS nurse to be up to date with all the information and everything that's going on. And since 2000, the MS Trust has provided Essential Training for every new MS specialist nurse in the UK. And as you know, Erica, and we're talking about we do sort of support your wider MS team with these, like residential training that they're doing study days and the biggest annual conference for MS professionals in the UK. So, there's a lot of stuff that the MS does do for MS Nurses. And I think that's, that's great. 

Nick
Yeah, and I'm just gonna bring it back around then Helena to what Erika was talking to us about in terms of the Big Give and why that's so important to us at the MS trust, and potentially to the MS community as well. So, the big give is a Christmas appeal. And it's an opportunity to you know, donate. But with that donation, you're gonna get double the impact. Okay, so that's just for one week only. That's from 12pm on Tuesday, 28th of November, until 12pm, Tuesday, the 5th of December. So, if you donate during that time, we have some pledges that that will allow you to double that gift. So, if you put in five pounds with our match giving, you will then Your donation will then be 10 pounds. So, you can make twice the impact for people who are living with MS this Christmas. So, you can head over to MS trust.org.uk, forward slash Big hyphen, Give or just search Big Give in our search bar there. So, what will that donation do? Why is that important? So, you can support that campaign and Your donation will go towards the training of those MS specialists, health professionals. The MS nurse is the MS therapist and what they will do you know with that training; they're going to help improve the lives of people living with MS in the UK. Together we can go ahead, and we can improve MS Health Care Services with you, with us supporting the NHS across the UK and I think it's important to mention that the MS trust and all of that training is not funded by the government at all. And it's not funded through the NHS at all, either. So, it's we are going ahead, and we are funding that ourselves. So, your donation will make such a huge impact for us, for those health professionals and for the MS community. So, if you can spare a little this Christmas, we can double that. So go ahead, and please do follow that, that that web link says MS. trust.org.uk, forward slash Big Give. And we'll pop a link to that in our show notes, too. And if you're listening to this, and actually, you know, it's past the time, this past the fifth of December, don't worry, we're really grateful for anyone who would like to support the NHS in terms of donation.

Helena
Yeah. And I think, you know, this campaign is really wonderful to be able to do that, because it doesn't, we're relatively small charities. So, it makes a big, big, big, big difference for us. And so, we've mentioned a few different URLs throughout this. And we'll pop all those links into the show notes, both for the appeal. And, you know, for how that you could donate anyway, like Nick said, if you're listening to this a bit later on.

And also, all those important things about how to prepare for your nurses’ appointment. So, if you have any other sort of questions that you think that you would want to ask the nurse, there'll be some suggestions in those articles?

Nick
Yeah. And if you do have, you know, you're thinking of questions, if you do have any further questions about MS life of MS being affected by MS. You can call our helpline team. So that's Monday to Friday apart from UK bank holidays, it's 9am to 5pm. Outside of those hours, you can leave us a message and we'll get back to you as soon as we can. And also, if you'd rather not talk to someone over the phone, you can also drop us an email. So, you can drop us an email anytime we'll get back to you between the hours of Monday to Friday 9am to 5pm. So, the email address to contact us is ask at MS trust.org.uk. And the helpline number is 08000323839. And we'll make sure as well we put links to this down in the description and in the show notes too. 

Helena
And I guess what we should say as well, if you are in that situation, that's a bit of limbo land while you're waiting to see an MS nurse and you have lots of questions and you feel frustrated and not having someone to talk to do get in touch with us. Because that's what we're here for. So, all those contact details though, we will pop them in in here. But yeah, do talk to us about any kind of concerns or questions that you do have. And if you prefer not to call or email you can also find us on social media channels. We have a very vibrant Facebook group that links to that one in the in the show notes as well. Where you can ask questions, you can ask questions anonymously and there if you don't want it to be sort of public who you are. And, but so you can find us on Facebook, we have both a page and a group. You can find us on YouTube where you will be able to find this podcast. We are on X, TikTok and Instagram. And you've yeah, this podcast you can obviously listen to as well, which would be on Spotify, Google, Apple podcasts and Amazon music and other places where you will normally find a podcast. We really like it when you give us a review. It really helps us in order to reach more people because you know we want to talk to more people about them as we want to help more people make sense of MS. So, all those little sharing and liking and leaving a review really helps us, and now I am going to go away and prepare for my I don't have a nurse appointment, but I do have a neurologist appointment for Monday. So, I'm going to make sure I get the right questions down on my paper. 

Nick
Yeah, good luck with that, Helen. Thank you everyone so much for listening. And yeah, feel free to drop us a review. 

Helena
Bye!

Nick
Bye!