Working when you have rheumatic disease: challenges, rights, and realities

How do we talk to patients about work and what does employment really look like when you’re living with a rheumatological condition? In the first episode of our Patient Voices series, Dr Lizzy Macphie, Consultant Rheumatologist, is joined by patient partners Dr Simon Stones, EULAR PARE Committee Chair, and Georgia Bishop, BSR Education Executive. 
Together, they explore the realities of building and sustaining a career while managing long-term illness, drawing on their own experiences of shaping careers around childhood diagnoses. They discuss the highs and lows of working life, share practical advice for both patients and healthcare teams, and highlight how rheumatology professionals can better support people navigating the world of work.

Useful resoruces:

Access to Work scheme 

Arthritis UK work & benefits 

Arthur's Place work survival guide 

NRAS work related resources 

 Advice about benefits

Advice about PIP 

Advice about Universal Credit 

Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.

BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

Welcome to this Talking Rheumatology podcast. This episode is part of our Patient Voices series, where we discuss key topics with experts and patients together. This episode is focused on the realities and challenges of working when you have a rheumatic disease. My name is Lizzie Macphie, and I'm a consultant rheumatologist working in Preston as part of a community-based service, and I'll be hosting today's conversation. I'm joined by Simon Stones. and Georgia Bishop, who are going to help us gain a better understanding of the challenges faced by individuals with rheumatic disease in the world of work, and really importantly, how the Rheumatology team can best support individuals. So can I ask both of you to introduce yourselves and tell us why this topic is important to you? So Georgia, can I come to you first? 

Of course. Thanks, Lizzie. My name's Georgia. I am the Education Executive at the British Society for Rheumatology. I've had a few years working for organisations that support people with rheumatic conditions.  I have experience of having juvenile idiopathic arthritis since I was eight years old, so a long time living with this condition. For me, the topic of work and career when you have a rheumatic disease has always been a passion of mine.  Since growing up and navigating work for the first time, there was always some fears  of how you'd be perceived and how you would navigate this world as well as having an enriched career that  gave you a purpose and felt worthwhile. I was always quite conscious of how I'd be treated around employers,  but working in this field and having this condition now,  I see the real value of being a patient and a professional at the same time.  I'm really excited to share this conversation with Simon.  

Oh, thank you.  And  Simon, how about yourself?  

So my name is Simon Stones and I am a global patient engagement leader and medical communications specialist.  I have various hats, but my primary role is as a person living with juvenile idiopathic arthritis. I've had that since I was three years old. And I also had caregiver experience, and I saw my mum who had to stop working in her thirties, so with them it's very similar to what I am now because of her diagnosis with myositis and lupus. So, you know, for me, work is such a fundamental part of your identity and the biggest priority for me is for people to be able to come to work as a full self to bring all of their experience and enthusiasm  to work and to get the benefit of that.  So really looking forward to our discussions on this podcast.  

Oh, thank you both.  yeah, really, really, really interested to hear um your responses to our questions. And  just to give you a little bit of background, I'm really fortunate that I wear various different houses as well at work. So obviously I'm consultant rheumatologist, but I have a role working for the ICB, so for the integrated care board. I've been this for a couple of years now and it's a really interesting and challenging role trying to link up health and social care in the voluntary sector. But also a big part of my role is helping to address health inequalities and trying to maintain those conversations about how do we keep people in work and how do we support people get back into work.  And we've been very fortunate on our patch to be part of the Work Well scheme,  which we may well get to talk about a little.  And also just understanding the fantastic work of the voluntary sector and patient organisations and how much  they can really help us as healthcare professionals. So I have no doubt we'll be  touching on  some of the work that they do and the resources they provide. So coming to you first, Simon, when you're living with a rheumatology condition, what does work  actually mean?  

I mean, it's great question and there are so many different aspects of work and it depends on the individual. know, if you think about children and young people, work could be part-time work, studying  and  even then into adulthood, there's full and part-time employment, volunteering.  There's lots of different aspects of what work means to individuals and with everything  in the health and wellbeing space, we should be looking at this individualised approach. What matters to people  where they can contribute?  grow and develop as people and get  that return back from that activity. So  work means something different for everyone. And I think in our conversations with people with lived experience, we need to reflect the different priorities and work to really understand and make sure that every individual has the opportunity to express how they're feeling, what they want to get out of  their work, and then have the necessary support and  practical help in place to be able to  fulfill.  that need which is a really important part of  daily life. Great.  And Georgia, how about yourself? What's your views on this? 

I completely agree with Simon and how it's important that those individual goals are recognised and supported. I think thinking about me and my personal experience, I always looked at  career and work as a purpose and an achievement. Often when living with a chronic illness, it can sometimes make you feel  isolated and a bit lost. and the direction whilst you're awaiting big decisions or progressions in treatment. And I really leaned on my career to fuel me. But also I've been volunteering for a long time and those  experiences also fueled me. And like Simon says, we've all got a different goal and what we want to achieve and what brings us the most joy and purpose. 

Great.  So having a think of your journey, so what changed first? Your symptoms, your job or your confidence at work? So Georgia. 

For me, growing up with a chronic illness and being diagnosed at a very young age, the symptoms came first. So I was eight years old when I was diagnosed. I don't think anybody's thinking about career or jobs at that point, but especially education. So for me, it was navigating an early career,  secondary to my condition. And I think that's what brought up some initial fears of how would I be perceived and how was I going to be supported?  And I think sometimes until you find your feet in your job or your career, how do you know what those needs are? How do you know how to approach them?  How do you navigate those conversations? The communication is just as important as securing those support needs when you get there with your employers. But I think also it was about navigating what career I wanted to do.  I never really knew the job specifically that I wanted, but I kind of always knew who I wanted to be.  And think there are fears when you're growing up around what job you could do with an illness  and making sure you're supported in that anything is achievable as long as you are aware of what you need to be a success, but to also make sure you  are looked after and you're okay in that as well. 

No, really insightful comments.  And Simon, how about yourself?

I mean, much like Georgia, know, I was diagnosed as a child with my condition, so  I don't remember life before my diagnosis. which in one sense you think looking back is a blessing because I have no comparison and I really empathize with people who are diagnosed as, know, teenagers and adults and then they compare before and after and I think that's a real adjustment which is really difficult to navigate. So my entire life has been shaped by juvenile arthritis and it continues to do so. 

And again, know, Georgia has mentioned things about, you know, the joy of work and sometimes it's very difficult to  find that joy when you see all the negatives. You know, we  as a society, we're really bad at saying you need to work hard. You know, this is instilled into children and young people. And I remember this, you need to work hard, you need to  travel five days a week, you need to do X, Y and Z.  And that can be really off-putting to people about actually how can work fit my personal circumstances. And we're talking about this in the scope of the Rheumatology board, you know. work should be fit for purpose for everybody. We all have different experiences, whether that's lived experience, or the conditions, caring roles with parents.  There's lots of things and actually work should be fit for purpose so that people,  you know, it meets the goals, it meets that personal drive to contribute to society, but that it's also fit the purpose with  everyone's individual circumstances.  And  so I feel like I've been really lucky over the years to  you know, once that confidence is there to say, this is what I want to do,  I know my rights, I know the support that I need to be able to  access work and contribute to the best of my ability.  When you have that, things weren't much easier, but unfortunately, not everybody has that confidence or the knowledge or the support to be able to feel that way.  And so that's what I hope we sort of get out of today's conversation and some of our discussions. Yeah, and it's really interesting, obviously, you've both lived with your condition  since childhood and like you say grown up and in your case Simon you can't remember a time when you didn't have  juvenile arthritis. I'm sort of reflecting hearing your stories on the I suppose some of the conversations I have with patients in an adult setting and  you know I'll be seeing patients  of all ages and I have you know good fortune to do a young person's clinic as well but thinking of my sort of adults and  you know people's in their 30s or 40s sort of prime you know really they've worked hard to achieve and get to a certain stage and then suddenly these diagnoses coming along  and you know they floor them and then suddenly the reality will I've got a really physical job and I  just can't do my job and when am I going to get back to being able to do that people who are self-employed  it's a really really frightening time. and just not knowing, like you say, what their rights are,  what they can be entitled to ask for, or  how long is it going to be before? And often, actually, the priority and the focus of the conversation is, I'm really struggling, but  I've got to put food on the table. And  that can be quite a daunting conversation to have with patients when  you feel unequipped. So the other group of patients that are really difficult to know how to support with these conversations   Especially when you're diagnosed in adulthood is people who are hard self-employed because they can't go to anyone to ask for reasonable adjustments. But  there's loads of support out there that can be tapped into. It's about making yourself aware. there's the access to work. Our  patient organisations  have got loads of really, really helpful advice  that you can sign post-patients to.  With that in mind, can you remember the first time someone in a rheumatology team asked you about work? Simon, coming to you first. 

I remember in paediatrics where school was mentioned, and if you didn't just go back to school, what are you doing, what are you studying? And that's a level of detail. I often found it was members of the multidisciplinary team from the allied health professionals, especially the occupational therapists. He would write letters to school, for example, and  remembering about  increased time  to do written exams because I would struggle holding a pen for a long period of time.  even just some of those practicalities,  that was mentioned.  then shifting to adult care settings,  the primary question I get asked now is obviously because I've got a PhD, people say you're a medical doctor or a research doctor. And then we talk about that. And it's about the work, not about the support in place. And I think that one of the biggest challenges around that is because rheumatologists simply don't have enough time to address all of the clinical and patient-reported outcomes. They don't have a chance to look at the wider holistic view, which we all know is important. We know holistic care is really important, but there's just not the time or sometimes the knowledge or the uncertainty from the professional side. And Lizzie, you'd be really interested to hear what you think around asking a question where you don't necessarily know the answer. know how can you ask those questions and then say oh sorry I don't really know anything about this go and find something else. You know there's that uncertainty on both sides and I feel like we need to shift gears to avoid saying you know the rheumatologist should be asking about everything because we know that’s impractical, but we should be taking a person-first approach and bringing in the right specialists and signposting to the right resources in the most appropriate manner. Yeah, I think you know it's I think you've raised a really valid point. It's very easy not to ask the question when you're scared of, don't know the answer. And you're sat there as the expert in the room being expected to know all the answers.  But like you say, having places that you can signpost people to is really important. actually,  I don't mean to sound sort of blase with this, but we can't know all the answers. We have to know where our limitations are.  But. there are some people out there and some really good resources and we'll hopefully we'll come to some things at the end which will be really helpful for people to go away and have a have a little look after this podcast.  But I think  the temptation is if  as a clinician is if you don't have a way of tackling the questions you won't ask that difficult question and that in some ways is more detrimental. Whereas if you  give people a few tips and tools  then people will be more empowered.  So Georgia, on that topic we were discussing with the first time someone in the rheumatology team asked you about work. Can you remember your experiences of that? 

Yeah, a very similar experience to Simon in terms of the shifting gears between education and work. I remember being asked what my job was in pretty much all of my adult consultations, but the conversation kind of then stopped there. There was no further development on are you supported? How does this look day to day? And I think  we have discussed and we all appreciate the busyness of a consultation and that precious time. But I think viewing somebody as more than their condition and the wider landscape of how does their condition fit into their life. Work is a very, very big part of that. And you might have somebody there  who is needing a little bit more support who doesn't know where to go to. And a lot of the time it's just about opening the conversation. And I think as a patient, even if my clinicians didn't have the right answer, just to have a safe space to explore that is still just as beneficial until we find that key resource. 

Yeah and I think we can do something as well with how we document those conversations, document you know that someone's struggling at work and we've had a discussion about that today that that acknowledgement that validation  is really important because  I suppose it shows we  we're seeing a  person in front of us not a patient in front of us is what I often say to the medical students.  So what would be your advice to rheumatology colleagues about when and how to ask about work  considering that patient journey? Georgia? 

Yeah, I think I’ll just build a little bit more on what I just said about having those just open  door conversations around it and generating a safe space. I don't actually think there's a right or wrong time to ask that question. I think as long as it's asked and it's talked about, it depends obviously also on how often you see your clinician. I see mine every six months. the likelihood is my job isn't going to change between two of those  appointments.  So it doesn't come up as regularly. But I also think there's a real key conversation to be had when you're in your first referral appointment and it's the first time you're meeting this patient and  learning about them on a bigger scale. How does their life fit in around this condition and making sure that they're supported? And also in  adolescence and transition, make sure you're talking about it with young people, get them excited about their career, about their future and make them feel hopeful that they can achieve whatever they set out to achieve.

And Simon, your thoughts on this?

Honestly, I think some of the best consultations are when you feel like you're sat down with a friend having a coffee and we're asking what matters to you. And then it's linking everything together. Clinical outcomes are affected by work, stress, other factors. And if we don't tackle the issue, we sometimes don't tackle the outcome that we want, is, you know, reduce disease activity,  better quality of life. And so we're linking everything together. We begin to unpick some of those issues and it could be that somebody's overworked and stressed and maybe not taking the medication or there is other factors.  So it all has to come back to just saying that what matters to you, how are you feeling and allowing that individual to express that. And then coming forward with a plan, OK, what can we do to start tackling this? Realizing, you know,  you can't change everything overnight, but you can begin to put things in place for the short, medium and long term to begin to tackle some of those challenges.  And  for me, that's how every conversation needs to start. Yeah,  I've got a great little question that I always start with my follow up patients is, OK, you know, after the pleasantries of walking down the corridor and saying, I've got some medical students in with me, is that OK?  the first thing I will put to them is right, what would you like to focus on today? So immediately put to the patient. So if it's work, they can talk about work. If it's family, if it's I'm doing really well,  you know, or I've had a  raw infection, I've had a really bad flare.  It's up to them what they want to take as a priority. um And that it's just been such a helpful tip. So coming on to sort of questions and how we can ask them, what does a good work question sound like from a healthcare professional? So Simon. I mean,  I think the important aspect is asking how, firstly, you know, what do you do? How are you feeling at work? I think just asking how people are feeling, are they stressed? Are they struggling? And just reiterating to them that there's no right or wrong answer. I think sometimes, you know, people with lived experience feel sometimes maybe feel inadvertently forced to say, you know, I'm doing really well because they want to come across as being able to cope and... And actually making people feel comfortable enough to say, actually, no, this is really a bit of an issue and I just don't know what to do. So having that openness and really exploring and sort of using techniques like motivational interviewing and really trying to unpick if someone says, oh, everything's fine. is it really? How are your employers? Are they flexible? Even just giving some of those prompts can be a way to enable people to think, OK, do you what I can share some of how I'm feeling. Realizing that people are not expected to be able to be managing everything completely. There's often that expectation there. So I think being open, being approachable and just unpicking sometimes because sometimes a thirst response and especially when we say, know, how are you doing? More often than not, people say I'm fine and then naturally you start to unpick, and you realize everything's not quite okay. 

Yeah, I love that. I'm fine. No, really, how are you? Because you don't look fine. You don't look fine to me. It's a very British thing. is. And someone sort of lived down the corridor and you're thinking, they weren't hobbling like that last time I saw them. No, you don't look fine. no, I just I know you're running late Dr Macphie. I don't want to keep you too long. And I'm like, look, and I'm so grateful to to patients for understanding, you know, we don't have much time, but. But if you're going to do a consultation well, then you need to give every patient that time they need, don't they?  

So Georgia,  from yourself, what's a good work question? What's your feelings on this? 

Well, I think I've been an I'm fine phrase user a few times in a consultation.  But in terms of asking about work, I think one of the important things is to not make it so direct, like Simon was saying around the prompts. Find out. If they want to work, if they're okay to work, do they feel well enough to work?  Is it something they want to explore without having the assumption or almost the direction of are you working or are you not?  know, explore  that landscape further. What do they need?  Having that open conversation and using those prompts, like Simon said, will make it a safe space that people can explore what's important to them. 

So we're going to flip the question now. So we've talked about what's a good work question. What's the worst?  well-meaning advice you've ever had about work. So, Georgia, I can see you smiling there. 

Oh Interestingly, it's come from employers more than professionals, from my experience, which I’m grateful for in a sense that it's not the other way around. But I think I had an experience before where an employer had doubted my ability to do the job for the amount of appointments that I would be having and the possibility of a flare. And that really made me doubt my own ability and my own confidence in  my work. And I actually took that to my rheumatologist at the time and said, look, this is this is what I've been told. This is how I've been approached. And I had a really safe conversation around understanding my condition more and my abilities  to take that back to the employer. And thankfully, the conversation. was successful, but that initial judgment of can you do your job well because of this em at quite a young age, I was around 18 when I was asked that and when you're navigating an early career, I  think that doubt is really quite a concerning thing to hear but thankfully, my rheumatologist was very supportive in that and helped me navigate that conversation back with the employer.  It's interesting that you're reflecting on that. I've had a few instances where people just haven't been able to  get their employer to really understand their condition. Like you say, it's this sort of fear of, no, no, we've got to  look after you and you're have lots of appointments.  sometimes I've been known to give patients two copies of their patient information leaflet about their condition  and say, look, if you want to, here's one you can give it to  your line manager or your employer, depending on their work environment, just so that they can understand a bit about your condition. Because it's going to be a bit of a rocky ride initially getting you onto the right drugs and things. 

That's been helpful. It's not appropriate for every patient but just sometimes when they need a bit of help articulating things it can be challenging.  So Simon, coming on to you to flip in that question, what's the worst well-meaning advice you've ever had about work? 

From experience some of the biggest issues have been around the invisible nature  of many  rheumatology conditions and that's certainly something I've experienced. You know, my disease is in remission, clinical remission, but I still experience symptoms.  I still experience morning stiffness.  I still experience fatigue.  And it's often this invisible nature of the condition, which adds another level of complexity. You know, it's very obvious to see when somebody's got a  heart swollen joints and they're  visibly  affected. But when we think about the  flip side, that's where a lot of people struggle, including the clinical side. And so, know, over the years I've had, you well, you know, your CRPs below range, everything seems to be working well, but I'm still experiencing these symptoms.  And  that is a huge issue, I think, for people to understand actually, I'm trying my best, I'm doing all of my self care,  I'm taking my treatments, I'm doing physio, I'm trying to implement all these different activities, but I'm still struggling.  And sometimes as individuals can feel like nobody's listening to them. both on the clinical side and also from the employer side. And I think that links with the variability of these conditions. know, sometimes in a morning, I know I am terrible, so I will try and avoid meetings and stuff in the morning. Sometimes it can't be helped. And then can be great at lunchtime and then in an evening worse again. And this unpredictability is such a huge issue for us with the lived experience of these conditions, but could also appreciate it from other people's perspective. and trying to navigate that and say, you know what, I'm not just being lazy and not wanting to work, but I'm really, struggling and it's often that, you know, they're usually well-meant advice, but sometimes can come across as patronising or just completely lacking that understanding of these conditions aren't just black and white. They're really complex. uh And things change within a day, within a week, a month and over time. 

Yeah, Georgia, go on. 

I just wanted to add to what Simon was saying and completely share his experience there. And I think one thing that I've noticed is my personality is very much an all or nothing life and soul often.  And I think that adds to that invisible  judgment sometimes of you seem absolutely fine. You're having a laugh. You're having a joke. You're managing and actually underneath while you're still trying to incorporate all those activities and looking after yourself and self care. You are still really struggling, even if on the outside you're smiling and you're happy.  And I think that's tricky sometimes for people to understand that below the surface, there is still a lot that's going on. 

I remember a good few years ago, I had a really, powerful conversation with a patient who rang up after receiving my clinic letter. um And it said, know, doing really, I know it was in the days when I used to write to the GP, copy to the patient, I've now flipped, I write all my letters to the patient, I've done for the last few years, but it's in those days, you know. saw  this 54 year old lady in petting clinic today is doing really well.  It was great to hear that she's just got a promotion at work and um I think there was something around, know, her  final comment when her disease is in remission,  she knows to continue with the medications,  any problems to get in contact. um And she rang through to say, you know,  I'm just a little bit, I'm struggling a bit at work. I am having the odd flyers and things, but. because my clinic letter says, I'm in remission and I'm doing really well,  my employer just doesn't understand.  And it was because that letter had been shared to sort of try and explain, well, this is my diagnosis and such, but there, you know, I'm saying, you're doing well, you got a promotion and you're in remission. And  it just was how it was perceived. And it's really, really made me think about the importance of,  you know, we may be saying, look, this patient is doing well, to recognise,  but recognising. you still struggle with fatigue on a daily basis and there's the background aches and pains and stiffness  just to acknowledge that there's always that like you say day-to-day variability because we can use terminology  and especially when people have to take in letters to support discussions what we write is really powerful for those discussions.  So  yeah so I've certainly it made me  really really think about  how I word things in in letters.  Thinking about sort of adaptations at work and such, what's your most unhinged work hack that helps you get through? So coming to you, Simon, first with this one. 

Honestly, I try and build in blocks of time in my diary where people can't book me in there. Usually in the morning and I put, know, do not disturb time. that actually is time just for me to come round. And again, it's flipping that narrative around them being controlled. And not everybody is able to do this just to our knowledge, but  you flipping the narrative around saying,  I know what's going to work for me. And I'm actually going to start a bit later. You're not going to disturb me in this time unless it's absolutely critical. Something's on fire  because I need this time to actually just start functioning.  So I do that. And, you know, there'll be random other bits and bobs throughout the day where I just, you know, take control and I know my body best. I know  I work the best and when I'm the most productive and that's what work should be right. It should be about not working hard in the sense of  working nine to five, even though you're really struggling, you know, can have a really productive three hours that I know they're suspending eight hours at the computer and it's just unproductive. So  it's about making things work for people because ultimately that ends up with better outcomes for the person, better outcomes for the employer.  

And Georgia, how about how about yourself?

I agree with Simon about that protected time, it's really, really important and I also do the same. I have a hybrid role and I'm very lucky to have that work from home balance as well as being in an office setting. If a flare is really bad and I can't get out of a meeting, you will often find me sat with ice packs under the table or out of the camera on a meeting. But just try and keep that flare at bay.  And that tends that does tend to work for me. But  Most people wouldn't know on a meeting I was sat with an ice pack on a certain joint that was giving me bit of trouble at that moment in time. Y

eah and I suppose it's really good to hear how you’ve learnt to protect that  time, give yourself time within your job plans. Thinking of patients who are in jobs where they may not have that  ability, particularly people um in physical jobs and such,  is there anything that you can think from your experiences of maybe  you've learnt to do that over the years, are there times when you think  well actually um this is how I could have got to that stage of having some breaks, is there any advice that you give to patients? 

I mean I would argue that have that conversation with the employer and say are there alternatives, are there other ways of doing this oh activity. And just having that conversation, which I know is so easier said than done. And I feel like I've been blessed with with employers over the years who understand and, you know, kind of in a role now, I said this works for me. You know, if you want me, you need to make it work kind of thing. And I know not everybody's in that position, which  which is a shame. know, employers, I think, fail to understand that if they support their employees and make them feel empowered, then they get much more for that contractual employment than  if they don't do that you know, even just having that conversation to say, okay, this  is a current situation. I want to continue working,  but I may need to explore a temporary different role that's maybe not as physical  or potentially reducing my hours. And then backing that up with the legal frameworks and workplace rights  and having the confidence to go in to say,  actually I know my rights and employers have a obligation, a legal obligation to make sure that that employment is offered  through discrimination.  Having that confidence makes such a difference, but we know so many people just don't know about the support and the infrastructure that's in place to enable that to happen. And it's also in the case of employers, they should be making sure that their employees know that they have an obligation to make sure that they're supported. 

Yeah, it's really, really good points and we've got a really important role to play to make sure people understand that there's laws out there to support them in work and to stay in work and make those reasonable adjustments. I'm thinking one of the things I will quite often say to patients is because everyone's job is individual and how they can manage around it and good and bad days and such. I'll quite often say, you know, is there anything that I can put in your letter for you to share with work, with your line manager? that would help you and I'll sometimes, you know, I've got patients where,  you know, where they're working in a supermarket and they can do an hour or so on the till, but after that,  they really struggle with sitting in one position for that long and doing repetitive actions.  So this is actually what would really help me is if I could do,  you know, just spend an hour doing a certain role and move around the store and do different things because I can do a full day at work doing that, but I couldn't do a full day on the till. So,  you know, we craft something together and I'll, read them out what I'm going to put in the letter  and then I put a little comment at the bottom to say I'm more than happy for you to share this letter with uh the relevant person at work if it's helpful to have a discussion about reasonable adjustments  and that's really helped  and it's just a really simple thing to do but it's  just like you say personalizing that conversation and understanding what you can do.  I never sort of say to the employer you have to I say  please could you consider or just giving people the opportunity to take a few more regular breaks if they're having a difficult time.  And I think sometimes we don't  appreciate that we can do that as healthcare professionals.  You can provide guidance  as to what would be a reasonable adjustments and that's the whole purpose behind things like the fit notes is  someone can get back to work if these adjustments are made.  So.  So with that  in sort of mind and thinking about adjustments,  what would you say to someone who feels guilty about asking for adjustments and how as healthcare professionals can we best support patients when they're speaking to their employers? Georgia, coming to you with this one.

I think we've touched on it already a little bit in this conversation about how hard that conversation is about putting yourself out there and putting yourself first in your job. But I think my  piece of advice is to always remember that your value in your job is not measured on how many adjustments you have or what you need to get through it. In fact, those things are going to make you perform better, be better, encourage your personal development. And I think the key conversations should come from the healthcare professionals as well about understanding what those adjustments might be. I spent a very long time not actually knowing what I might need at work and having a safe space to do that with my clinicians. meant that I could go away and really think about those adjustments, but also understanding the variability of those adjustments might change. It could be in weeks and days and months and of years as as those flares change, as treatment changes. And I think that's really important to know that that conversation that you have initially, be brave enough to have it again and make those changes if it's relevant at that moment in your journey. 

Yeah,  I think that's really, really valuable, especially, you know, people change jobs, don't they? and then they need to go back through and it'd be different roles. So,  and Simon, how about yourself? 

And this piece of advice, I need to practice what I preach here because I am the world's worst at this,  but it's to stop comparing yourself to other people  because I think that inherently feeds this, you know, this cycle of guilt and actually  there are people worse off than me with similar conditions or other long-term illnesses and disabilities.  Actually, I just need to, you know, suck it up and just get on with it. and ultimately that is the wrong decision.  Because you have a right, you have this diagnosis  and no matter whether you have the couple of joints affected with a rheumatology condition  or it's systemic and affects multiple joints and multiple organ systems,  know every individual matters and so I think firstly to people living with rheumatology conditions  don't compare yourself to other people, recognize you have this diagnosis and you have right to be able to access the support you need to  live a fulfilling and healthy and happy life,  that's critical.  So I'd advocate that for people living with conditions and for health professionals to  not inadvertently compare to other people so your condition is relatively mild or  just some of the language even in the clinical letter, well control and that makes people think oh actually I don't need this support. uh And you know what the sweet spot is somebody who's well controlled, they've got a good quality of life and they've got the support in place and it may not be implemented but it may be there ready  just in case and hopefully some things may never be needed but actually to have that in place and  that infrastructure in place ready should people worsen  or should they need to access specific resources then it's in place. So and I'm the worst at doing this because I always think you know there's people worse off. Resources are limited and we need to move away from that narrative because every single person matters. That's really, really good advice.  So thinking and we've commented already,  we don't have all the answers as the healthcare professionals.  Are there organisations that rheumatology professionals can signpost people to for support about work related  discussions? First to mind is, I think some of the amazing work of the charity and third sector. So organizations like Arthritis UK, National Rheumatoid Arthritis Society in the UK, they've co-created resources which look at guidance on workplace rights, reasonable adjustments, managing work with arthritis. So even just knowing, I think they've co-created these amazing resources, they try to get them into clinic and into the hands of people who need them. And sometimes that's a difficulty. even just...  spotlight into all health professionals  working in the UK and abroad that we have these resources, signpost people with lived experience to them.  And even just signposting can be a massive step so that individuals can look through that information, digest it, and then go to the right people to answer some of those questions which, you know, rheumatologists don't have all the answers as we've mentioned previously.  

So signposting is such an easy thing to do but can have such a massive impact and just knowing that those are there and people can  access them at any time I think is a win and it's a really small and  easy win and Georgia how about yourself?  Anything more to add as far as signposting? 

Yeah I completely agree with Simon and the important work that the charitable organisations are doing. I think it's also important to highlight that the patients might not know the answers either. and  we might not know what we need at that moment in time. I think the other  scheme that I would highlight is the Access to Work scheme. It's something that I've very recently experienced and didn't know much about. em And it's a scheme that supports people  in getting into work and staying in work with those reasonable adjustments.  And you might go through the process and realize there might not be anything that you need, but there's no harm in exploring those options.  And you might actually find em through that organisation that there's things you never thought about and that was definitely the case with me. So  it's worth exploring even if you get to the end and think oh that's not relevant right now but at least you know for the future what could be in place if things did change. 

And what sort of things just expanding on that you said you didn't realise what you could access through,  you sort of expand on that further as sort of things that it's helped you with that scheme?  

Absolutely yeah there's the reasonable adjustments in terms of software at work and equipment help you do your job but there's also support around psychological support, transportation and those are key things that are different to everybody but that could be relevant at any stage of your patient journey and being in your career as well. 

Now that's really helpful,  I'm going to go away and google myself after this and I think it's also just sort of thinking of our sort of local setup where I'm based which is up in Preston in central Lancashire. We've been very fortunate to have, I mentioned briefly at the start, that the Work Well scheme, which is about supporting people to stay in work as well as supporting people who've fallen out of work.  And they're a group of  organisations who've been brought together to support people. And it's tailored to the individual.  So they can, there's lots of different organisations, mostly third sector,  who were supporting people with conversations.  So we've done a lot of raising awareness so that when people ask those questions about work and people are struggling, we can signpost to that and patients can self-refer into that scheme and that's been powerful again, because it's a resource.  We struggle, you do your best with letters and things, but then it comes to a point whereby we haven't got much more we can offer within the service.  But knowing what's out there in your locality is really important to ask around. Coming on to our sort of final section. So you've both got roles within rheumatology organisations, what point did you move from coping as a patient  to  using your experience to help shape the system?  So Georgia, your thoughts on this? 

I'm going to be completely honest and if you'd have asked me 10 years ago, is this going to be your career? I don't think I would have ever have picked this.  It was definitely something that I never envisioned, but I'm very, very happy to have developed into.  This career for me came from a volunteering opportunity  and seeing myself as a volunteer and how insightful it was to be in this landscape with lived experience is what really motivated me to move me into this career. And I think the value of having a patient in a professional setting and being able to do both and be both has really not only fueled me and given me a purpose. and helped me with my personal development as well as my professional, but also just to see the impact that it has on clinicians,  on the landscape, and it's helped me understand my condition even further. 

Great, great. And Simon, how about yourself? 

I mean, much like Georgia,  I fell into what I do now through volunteering, you know, studying biomedical sciences at university. because I was always interested about why did these conditions happen?  try and trying to understand and having that inquisitive mind.  And then, you know, being invited to be a horrible term at the time, a consumer representative, but  essentially a patient partner on a clinical studies group for pediatric rheumatology in the UK.  And  very slowly beginning to realize the value that my lived experience has.  and getting involved in lots of different activities. so volunteering at that time, were studying, but volunteering was the work that was where I was getting that benefit and really achieving something that I never thought would be possible. And then all these years later, leading to no chair in the  the patient arm of the European Alliance of Associations to Rheumatology  and getting to work with hundreds and hundreds of people with lived experience around the world and  motivating people to realize that their experience is expertise and can add strategic value to the future of rheumatology  and global health.  That is just, again, like Georgia, if you go back 15 years ago, never would I have imagined that I would be using my lived experience to shape what I do professionally.  And  bringing your full self to work, what a blessing to have that opportunity to combine the professional experience, the lived experience to really make a difference. And I feel so, so lucky to be in this position.

That's really, really powerful stories. And really interesting that you both went from that volunteering route into where you are now. So with that in mind, of has working in this space changed how you view your condition? Simon, how do you feel about that? 

Massively. I mean, people struggle to believe that I am an introvert at heart, an introverted extrovert. But, you know, I was a very, very shy child. I would never be raising my hand. I was always very quiet. I wouldn't ask questions, including in the clinical setting. I'd go and try and find it before, that's before we had the Internet and social media. So actually being in, you know, as a patient advocate, it's made me much more confident. It's made me a phenomenal self-manager. It's gave me so it's given me so much knowledge about my condition and the confidence. And, you know, in all the interactions that I see, confidence  and having an understanding of the evidence base is such a massive tool, know, knowledge is definitely power.  So it's something I've learned and you know, we're always learning and always evolving, but you know, my experience working within this setting as a patient expert has drastically changed how I manage my condition and how I approach conversations.  And you know what, it's also given the lens of, know, rheumatologists and health professionals, human beings. And actually, when we sit together as human beings, we achieve so much more. And that's something you don't always see when you are just, you know, an average patient who isn't involved in shaping the research and care landscape. And it's something I talk about quite regularly, like, let's put everything aside, we're human beings and we're all here to help each other and to have a better quality of life. And when you do it in that frame, people start to think differently. 

Really powerful. Georgia, how about yourself? How is working in this space changed how you view your condition? 

Again, completely agree with everything that Simon said and his view on his condition. From my experience, I didn't have the smoothest paediatric care and I think at that time I was a little bit lost in the future and how that would look and I think falling into this career and making the connection between the personal experience and the professional has made me so much more positive about the future of my condition. It's really helped me learn how to communicate better with healthcare professionals, to work with them on that even playing field  and it's given me a real sense of purpose again that I did lose towards my adolescent period. So I'm really, really lucky to be able to do this job and to feed into education and everyday practice knowing that it goes back to that patient room where Simon and I quite regularly sit as well. 

Bit of a follow on and I think you've sort of alluded probably to some of the points here, but what do you feel bringing your whole self to work looks like for you now, Georgia? 

I think confidence is key. We've touched on it a lot and the purpose and knowing the value of having that lived experience. I think it's also about being the person or being the experience that you never had. And I think  we all can share a moment in our story where we might have needed something. Especially when we were younger and as I said in that time where my care wasn't as smooth, I needed a little bit more from my healthcare professionals. I needed more support. I needed more confidence. I needed more communication. And to be able to be that now for everybody else as well as younger me is something I'm really, really privileged of. And that's what I bring to work every day is that lived experience, the good, the bad and the hope for the future as well. 

Great. And Simon, how about you? 

I mean, I could just completely echo everything Georgia has said that the sweet spot is being able to be in a role where you are just you. You don't have to hide behind any filter. You don't have to stop yourself in saying certain things, but to just bring your full self. Three, from any kind of discrimination, any kind of bias, and being able to pull all of that experience and expertise to the work that you're doing.  And, you know, I see this  as a patient partner involved in research where, you know, many people have dual roles. Some people our researchers as well, or the lawyers, or they've got different, you know, clinical experience. Actually, let's bring all that together because all of that expertise is  so incredibly valued.  And when we stop trying to box people, which we do, the clinical environment boxes people with a condition on a certain treatment, that's not real life. We have multiple conditions, we're on multiple medications,  we have other competing priorities, and we have all these different experiences. And when we move away from  boxing people to actually recognizing the complexity and the messiness of life, that's when I think the magic happens. So  similar to Georgia, know, being that person that I needed when I was younger to say, you don't let people stop you from  doing what you want.  That's why I certainly try and do so the people  to inspire them to bring their full self to work and to embrace it. 

Yeah. I mean, your stories are both inspirational and your reflections on where you are now compared to where you were  some years ago. So thank you for sharing and that  very  open approach to the journey you've been on because it's clearly been difficult at times for both of you and that's come through.  But where you are now  and hopefully there's people listening to this, we know patients listening to this podcast.  They'll be hearing those stories and  giving them lot of hope for the future. So I think that's a really powerful  comment, Georgia, from yourself. So our final question, we always like to finish with a sort of top tip on a  podcast.  So what would be your top tip to rheumatology colleagues from across the MDT  to help them support their patients better? So Simon. 

It would be, I always struggle just to pick one, but it would be just stop and just ask where people are. How can you help them? And just rethrown it for masking, you know. How are your joints?  How are you coping at home?  Just  understand how people are feeling and how you can help. And just re-throwing that approach, I think we'll just open up the conversation. 

Great. And Georgia, how about yourself? What's your top tip? 

Again, like Simon, hard to pick just one. But my key word would be just to explore. Again, in the room, in the consultation, explore with the patient, explore the landscape of their life. How does this condition fit with everything else that they want to achieve and how they want their life to look? But also explore resources, go and learn what's out there, go and be present in what the charities are producing, what other organisations are producing, and just build your own confidence in that consultation room to be able to support those patients in that safe space with things that they can go home with and they can explore and they can figure out for themselves what they would like and what they need. And then everyone has got everything that they could possibly need to live an enriched life and work well.

Fantastic.  No, really, really helpful tips from both of you. And  brings me nicely to the sort of  the footnotes. So  we've got lots of resources available to people um attached to the notes with this podcast. So please do have a little look.  and lots of the things that we've talked about, there'll be links to those. So please explore, as Georgia said, you get yourself equipped with the knowledge so that you can signpost to those resources that are out there. So thank you both for an absolutely fascinating discussion. I've certainly been on a journey with both of you. I've learnt a lot. It's made me really think about how I phrase conversations and pick up conversations. So thank you both for your time.  Thank you, Georgia. Thank you, Simon.