Strategies for the CKD employee - Your toolkit to stay employed (or Pivot Smarter)

CKD (Chronic Kidney Disease) doesn't need to end your career, but silence, pride and ignorance will.

Illness is manageable, but putting your head in the sand and refusing to ask for help or help yourself is the real disease.

Over the course of this episode, we will discuss - 

* Your legal rights.

* Practical tools and strategies

* CKD-friendly careers

* The Mental game

Kidney Care UK Employee rights - https://kidneycareuk.org/get-support/free-resources/patient-information-booklets/employment-rights/ 

Kidney Care UK contact number - 0808 801 00 00

Access to work - Access to Work: get support if you have a disability or health condition: Apply for an Access to Work grant - GOV.UK

Transcript

SPEAKER_01 0:05

Let's get on. So I thought when I got that stage three diagnosis, oh god, here we go. I'm I'm done. I thought I was done the first time when I got my first set of conditions and things like that, and they told me and they told me then I were done, and I was like, nah, nah, I don't want to be done. I don't want to be done, I'm too young. And um and still many things I want to do. I I still want to go to Japan. And I can't go to Japan on zero money. So I need to be able to do some sort of work, and um that's really important for a lot of people with uh chronic kidney disease. They think that the time is done in work, the time is not done in work, you're just gonna have to pivot, you're gonna have to make some changes, and not do what I do and start eating cake over Easter and start eating chocolate over Easter. But I'm aware that I'm doing that, and I don't do it every week, so but it's it's a lot of times it can impact your pride, uh, it can impact uh your ability, your thoughts on thinking that your illness is your burden, which is not, uh, but it's ignorance and not understanding, and not understanding your own body limits, not understanding uh strategies that are out there, and just sort of like burying your head in the sand and saying, right, well, I'm doing that anyway. There we go. So this episode is to arm you with the legal weapons, daily tactics, uh career escapes that the other systems might not tell you about. It's about being manageable. If being powerless and just letting everything take over and everything is not the way to go. I'd like um anybody who listened to the last video heard that I had been turned down regarding a course that was really the only course uh that would validate a lot of the work that I do because the actual um courses don't actually exist. Uh so I I had three choices. I I could I could quit because I'm never gonna be able to validate the core, uh the work that I do, and nobody's if anybody's looking for a professional qualification in the work that I do and never gonna find one because it doesn't exist. So I could quit. Um I could uh just keep swimming and just keep going on the same thing, the same thing, and hope at some point that something changes and there's a course out and then I'll take it. Um or I could say, right, well, you know, like I did when they told me that uh 95% cancer and and all this other stuff was gonna happen and I was done, and I was like, Well, well, no, I'm gonna get myself back into work, and I got myself back into work. I and I can do the same thing logic to that and say, right, well, you know, if you're not going to help me access one, I'm just gonna have to make one. And so that's that's what I'm gonna be looking at. I'm gonna look at ways on how to create these courses. So it's the same thing with CKD, and and that is you can allow yourself to go, right? Well, I've got this condition, that's it, I'm done. I'm just gonna retire early, 20, whatever. I'm gonna retire, I'm not gonna do anything else anymore. I'm just gonna sit back and let the disease take me, or whatever else impacts on there, and I'll I'll I'll just you may as well you're dead, you know. It's it's ridiculous. Um, or I'm gonna do something about it, and I'm gonna find a way to maintain this and have a decent life, and you can still have a decent life. I know I joke about with chocolates and all that type of stuff and everything. As long as you do it with maintenance and everything, you're allowed to have one. There are certain things you shouldn't have, absolutely, and everything's in moderation, but it doesn't mean you have to like be totally clean 24-7, seven days a week for the next 40-50 years. You're allowed to have little bits. Obviously, consult your doctor based on your blood your own sort of bloods and things like that. But if I looked at my bloods, my bloods having the odd little bit of chocolate here, there, and everywhere is not going to be as damaging as going out and having 50 pints, you know, sort of thing. So it it's it's moderation. So just look at your own maintenance. So a bit of um bit of data. So about 7.2 million Brits have CKD. We mentioned that previously, most of them at working age, exhausted, terrified of telling their boss. As a result, you hide your symptoms, you burn out, you lose about 14, 15,000 pounds in earnings over about five-year period. You watch your job sort of evaporate. You know, it's and that and we're gonna we're gonna look at that. We're gonna look at that and look at your legal rights, uh, tools available, adjustments to keep you earning those types of scripts at work, the CKD uh friendly pivots that actually help you. Um it's it's not uh I actually wrote it as well, um uh Hope porn. I'm not sure if anybody's ever heard of that one that is uh it's sort of like um always looking for the result of things, and you get addicted to it of going, oh this this solution, this solution, this solution, the the hope of of of I might just be able to get there and everything, but not actually acting in anything. Not actually changing anything, just sort of like searching for the best hope, the best release, that type of thing, but never ever finding it. And that's when it becomes an addiction. So you know it's not that, it's a self-defense sort of mechanism thing, it's your toolkit to assist you in having a better life, armed with the rest of the research that you would do for yourself. Uh stop waiting for your employer to care. It that there is so many conditions, so many people, so many different things, so many things going on with their employer as well. Absolutely, they need to be aware of it to assist you and and so the next video when we talk about the work uh inclusive workplace, and read that, what what listen to that and look at starting them on the journey of supporting people with CKD. But it's not up to them to spot it, it is up to you to start that journey, start the ball rolling. You get your arm up, don't get left behind. So we're gonna start off with legal rights, Euroquality Act 2010. It often qualifies as a disability, it is a physical impairment with substantial long-term effect on daily activities, especially if you're in dialysis, which is like stage four, stage five, uh, and everything, they always tend to qualify in there. Your employer must make reasonable adjustments or they may face tribunal. It's not you don't have to automatically disclose, but once they know, and they should know, as I've just said, they're on the hook, then they need to then make the adjustments to support you through your dialysis through those different things and everything else. Not if you like stage two. Most people are stage two already and everything, you've looked that up. You don't get told until you're stage three. So just be aware of that one. We're talking dialysis, stage four, stage five. You make them aware when you're stage three that things may change, that you're looking at maintenance, these things might help you with support and everything else. If you're already stage four, stage five, they should already know because you need to have adjustments in place already. So the things you need to be looking at is um uh for the employer is like uh no discrimination, unfair dismissal, forced redundancy on health grounds. They can't do that, they can't force you out. Uh, you've got to look at statute day one statute stick pay under the 2025 Employment Rights Act changes. Looking at pip for extra costs, it's incredibly difficult to get pip. So do try and do that with somebody who who understands pip. Or don't do it yourself. Um, there'll be something you'll miss from the form. Um, we do that with a professional who understands pip, who will make sure that the form is filled in correctly for you for what you need. Um we see a lot of that in in the team I work with and everything else is people accessing it and not knowing what to put in it. So do do that with somebody that you know, uh somebody that's uh professional in there. You've got your access to work grants. I think I talk about them quite a lot. Uh they're government funded for government funded equipment, sport workers, transport. Uh it's up to thousands and it's not means tested. So definitely, definitely be looking at that. Um, you might not, as we said before, you might not qualify with being like stage one, stage two, stage three. Uh, but if you're advanced, you need to get those things in there. And it doesn't have to affect your uh uh chances for promotion or anything. If you've got reasonable adjustments in there, you've got as good a chance as anybody else. If you're very good at your job and you do bring lots of benefits to the role and everything, there is no reason why you can't have a promotion just on health grounds at all. It's as we said before in one of the other videos, it's better to have Fred who's fantastic at his job and is worth five Michaels than to have one five Michaels who are useless. You know, it it makes let's not promote Michael who's who's rubbish. We promote Fred, he just might have to take a day off for dialysis. It's fine, you know. It's it you gotta look at it that way. Now, if they refuse, uh you can join a union, and uh the grievance the grievances to reasonable adjustments, you can look at the kidney care UK advocacy line, which I will put in the information. Uh but it is 0808 801 000, and that is for free representation. As I say, I will put these links in there too. So, what about uh practical tools and strategies to stay in work? Now, to disclosure scripts that work, you know, in my CKD, chronic kidney disease, energy uh affects my energy and requires occasional appointments or treatment. I'm committed to the role and I want to discuss reasonable adjustments so I can perform at a hundred percent. Do it through HR so you get confidentiality unless you are okay with the rest of the team knowing. Sometimes your team uh your teammates and your colleagues knowing about it can actually be beneficial too because then they're not going to try and pass you a chocolate bar and then feel offended that you've not had a piece of their Christmas cake uh when it actually facts down to health reasons, uh, but you could also um they might be able to support you in other ways as well. So do look at that. Uh daily tactics. So uh track symptoms and energy on an app or diary, as I mentioned in my autism video, the medi app by tritone health. I'm not sponsored by them in any shape or form. I just I just know them because I've worked with it. Uh, as an app, for example, is also the Hope um, I think it's called Hope uh platform that they do for workplaces as well. That can be good, that could be good for tracking symptoms as well. Uh, but you can use a symptom tracker, you can create your own diary, that type of thing as well. Uh request workplace assessments uh via the occupational health that can be looked into that. Negotiate flexi time for when you're doing dialysis, hybrid work from home, uh extra breaks, economic chairs, no heavy lifting, private space for dialysis. Not a lot of people want to do their dialysis at work, but if they were if you were traveling into work and it was quite a bit of thing and did have that on the day, and they were able to provide a room and some space for it, I don't see there any reason to why you couldn't do it there either, and everything. I think um they would prefer you in work, you know, you have your dialysis and then back into work a couple of hours later. I think that's that's not that's not unreasonable. Treatment hacks, okay. Pushing for um home di uh dialysis, as we said there, uh, or nocturnal shifts to protect your daytime work. Using annual leave strategically for appointments, you know, got a day of annual leave. I have to take two hours out, I'll take the two hours out for that, I'll take a couple of hours out for here, I'll swap that afternoon over. Yeah, I do that. I have physio on a Tuesday, I don't work on a Tuesday. So I try and book my appointments in on a day, I'm not working. I'm doing Tuesday today, I'm filming. If I had an appointment, then I'll be at my appointment and then I film afterwards, you know. So it's swapping things around that allow you to do those different things. Self-management with your diet, blood pressure control, and exercising to slow progression. A lot of people think that exercising is the worst thing you can do with a lot of things, but exercising actually can be one of the best things you can do, and it does depend on your exercise. Always look at um, speak to a physiologist, speak to your doctor about what exercise is good for your condition and what is bad for your condition. You know, trying to when you have like uh hypermobility and lifting heavy weights free-handed is not exactly a smart move because you could end up snapping one of your ligaments, whereas using the machines or um the band ropes, you know, and other ropes and things like that is actually really good because of the resistance band element to it and everything. So, you know, it's understanding what's good for your condition. Other support, okay, access to work as we've uh we've mentioned multiple times, applying online can cover taxis to work, software, support workers, those types of things. Your EAPs for mental health, um, your kidney care UK grants for travel and fuel, as their links will be in. Now most CKD employees will sabotage themselves by pushing through until crisis. These adjustments cost the employers peanuts and keep you proactive and productivity-wise. Use them or accept lower pay and burnout. It that it it is what it is, you know. If you choose not to inform your employer what's going on, they won't know. And then when you end up burning out and they go, What on earth happened, Fred? You go, Well, I've had C I've had CKD, you know, I've been having to do the dialysis, I've been able to do this. And they go, Well, why didn't you tell us? Well, I was worried that I'd lose my job. Why would you lose your job? We we think you're fantastic. We we we could have put something in place, you could have you could have done some hybrid hours, we could have, you know, taken time out to go and do your appointments. You it the s this the room over there is is is free Fridays. You do dialysis in there. You know, you don't know. You don't know, you don't know what you don't know. You know, so uh you know, just sometimes having those conversations, you're not helping yourself by not having them as well. So you've got to think of those as well. It's a two-way street. Always with a chronic edge, it's a two-way street. It's not us versus the employer, it is us and the employer versus the condition. And how we can get the best out of both of us, how we can both get the benefits despite the condition, because illness is not the burden. Lack of communication and education is. So let's look at um friendly career opportunities and pivots. Uh say not all roles are fantastic, every role fits into the fatigue, appointments, dialysis, those types of things. So you may need to pivot your role or change it around. So low physical, flexible roles, you're looking at uh digital marketing, content creation. I'm at home, uh podcasting right now, virtual administration, um online teething, uh teaching, online teaching, tutoring, customer service, chat email, those types of things, consulting, data analysis, data entry, health advocacy, coaching, even uh renal specific patient support at kidney care UK. You know, there's these opportunities there, there's different different roles, different roles. I'd hire Count Dracula if he was good at at the tech, and I'd I just wouldn't invite him at Christmas party. I've used it quite a bit, but it makes sense. You know, it's those types of things. You just just because you've got the the condition doesn't mean that you can't do a job. Looking at platforms, chronically employed, very good, very good, chronically capable. They match disabled, chronically talented people into with remote employers who get it, they understand it. Looking at freelance via like Upwork, Fiber, Five Squid, whatever's running at the moment to help control your own schedule. Manual labor 9 to 5, probably not. It's probably gonna kick your ass. Remote knowledge work will give you dialysis freedom, higher control. Yes, it may mean retraining or lower pay, but staying in a toxic role is just gonna drain your health faster than any pay call. Uh start looking at different things now. I always remember I I went for a job, I'd just come out of like teaching night school. I used to teach creative writing, and um I was on about£30 an hour, which was a lot more about that, it's probably equivalent to about£50 or£60 an hour, maybe even more now. And I went for a job at KFC and um and I got an interview. And I I went here in my suit, KFC, and I'm sat down with um with the manager there, and he and he's like, What are you doing here? You know, I'm looking at you you've been self-employed, you've had your sh you've had a shop, you've you've worked in health tech, you've worked in travel tech, you've been, you know,£20,£30,000 here, you you you've worked as a teacher. What on earth are you doing here? And I said, Well, I've weighed it up, and I said, You're paying, I don't know,£7.28 an hour, and I'm currently on zero, and I've looked at the two options and I've thought yours is the better option for me. And they gave me the job, and I weren't there for about a year before I moved into residential care as a worker, and and it's that type of thing when you look at it of when that you know with your pay cut, you go right. Well, if I carry on with this job, I'm gonna burn out and I'm gonna have zero money, or I can take this remote job or this other job, and it's it's a pay cut, but it's a five it's a couple of grand pay cut, five grand pay cut, but it's gonna give me more time to be able to do this stuff, and I'm not gonna burn out as quick. So I'm gonna have a job at I don't let's just sake of argument. I'm gonna have a job at 20 grand instead of 30 grand, but I'm gonna keep that 20 grand job for for years, whereas if I stay in my 30 grand a job within 12 months I'll be done, and then I'll have no money. It's better to maybe pivot and look at how you can look at the 20 and then try and make some money up externally than keeping in the job at the 30 and then having nothing and absolutely burnt out and not able to get back into it, and it then takes you years to get back into work and everything for various different things.

SPEAKER_00 19:22

Always l important to to look at these things and have those conversations with loved ones and everything. Excuse me. Mental game when it's time to walk.

SPEAKER_01 19:37

I hate the term resilience because it always means that there's something wrong with you, but I but it but it but it a lot of people understand it. So it's building resilience. Talking with peer support groups, therapy via the NHS or EAP, framing your identity. I am strategic, I am not broken. Very important. A lot of people think that they're a burden, they're broken, there's something wrong with them with the conditions and everything. Yes, your conditions suck. Yes, they are very difficult to work with. Are they your fault? Probably not. Um sometimes things just trigger, sometimes they might be your fault, you know, and things, but you know, sometimes they just trigger if something you have an accident, things like that. And then you've got that other side of it of going, well, what can I do when I've got it now? Do I do I just crack on? What can I do with it now? It's so easy to quit. Quitting's easy. Carrying on and knowing when to quit actually is even harder because sometimes you do need to quit uh because it's just not working out at all, and you do need to quit, and that that's different. Um sometimes quitting is very, very easy. You go, this ain't working, I'm just gonna go, I'm just gonna stop and just not gonna do anything. Whereas carrying on and working working with your working alongside your condition to manage it and working alongside other people to think you're not gonna beat it a lot of these conditions in the long term, you're never gonna beat them. Uh but you can learn to live with them and learn to work with them and everything. So these are it's mainly about that. Now, if the employer for some reason stonewalls your adjustments after grievance, make sure that you document absolutely everything and explore tribunals, there are time limits in there, you're looking at three months, or exit the company if their values don't make match. Uh, when they look at their retention figures and realize why we're losing so many great staff and everything, and they look at it and go, Well, every time that is if somebody's ill, we end up getting rid of them, so the other people around them leave too. Maybe it's something to do with that. But if that's where it hasn't started yet and you're stuck in the middle of it, it it's better to be out of a toxic environment because it's not going to help you moving forward. Pride pride kills more CKD careers than CKD. K Day. You need to ask for help early. It's very, very difficult to ask for help, but it takes a lot of strength to ask for help. And employees who support you can become your biggest asset. And those who don't, fire them first.

SPEAKER_00 22:18

Fire them first.

SPEAKER_01 22:21

Don't get down the line and they go, Oh, we're letting you go because you're ill. Because then you will feel as though it's you. If they are not supportive for you long term and they ain't got your best interest at heart, fire them first and go and find an employer that cares about you and cares about your work. Because there are out there, there are some great, great employers out there that love talent and they do not care about your illness. They are there to support you because they can get the best out of you. So fire them first is a really good important one. So CKD does not kill careers. Inaction does. You need to download the kidney care UK Rights Guide and Access to Work today.

SPEAKER_00 23:05

Call the support line, have conversations, talk about your conditions, look at what's needed.

SPEAKER_01 23:15

That's really important. And a lot of the a lot of these condition ones, all the ones we're gonna we're gonna be talking about when we get into like arthritis, we get into uh you know um what else we're gonna talk about and everything, but we're gonna talk about lots of different tourettes, maybe whatever. And all these different types of condition crones. We we're gonna talk about it's not the condition, it's not the end of the world, it is how you manage them, how your actions with them move you forward. Have 13 health conditions and neuro conditions, it would be the easiest thing in the world for me to go, you know what, I'm done, I'm I'm just gonna retire. I'm just gonna sit at home and play video games and watch TV and Netflix and stay up and do nothing.

SPEAKER_00 24:06

But that's easy.

SPEAKER_01 24:08

It's easy just to sit at home and do nothing, but I get bored, I get irritated, I'd I'd end up losing everything that I hold here, and I've no money to do anything. And I don't want to be on benefits because I believe in working and I'd make more money working. So I so I look at ways that how I can pivot, how I can work with my employers, work with people to get the best out of people, and that's why these things are important, and you need to be looking at that. So I hope you've got some really good information from there and everything. I really hope that has been helped helping you with uh your knowledge, knowledge is power. You are not your condition, and illness is not your burden. The lack of communication or lack of your pride and your um actions are can be a burden, so it's important to move them forward. When we do our next CKD in the workplace episode, we will be looking at uh illness uh building a CKD inclusive workplace for data, return on investment, and the HR playbook. That is going to be uh great for any employers who are looking at it and great for the employees to understand the information from from an employee end as well. It's it's it's good to see both sides, you know. You always see that uh when people want something, especially in the community. I've done a lot of community work and they go, Well, we want this, we want 10 grand for this, and this is exactly what we want. And then you've got the seller or the provider of going, well, that's great, but we've got all the we've got about all these six, seven KPIs that we have to hit for us to be able to give you the money, and it's not us not giving you the money, it's it's where we're getting the money from. So if you understood that we had all these things to hit and you were to help us hit them, we can then give you the money, uh, and everything. And it's it's always important to look. I remember I remember it's a little story. I was doing a um a co-production and action uh program, and um they all they all started. We were gonna give people up to about 10 it was up to up to about 30 grand, I think it was about 30 grand for new projects. And everybody sat around a table and all deciding what they want to do. And this they went we want a hub. I always remember it. We want a hub, and it's gonna be a place that is gonna have oh, it was a brilliant idea. I mean, it was a great idea. We're gonna have this hub, and in this hub, uh it's gonna have uh space for community groups, it's gonna have uh an in-house uh therapy, it's gonna have uh you know blood, the the NHS can go there with the nurses. Fantastic, fantastic. Now you've got to remember this project was for Lancashire and South Cumbria, so there were people from all over Lancashire and South Cumbria. So we had people from Blackburn, Burnley, blah blah blah blah blah, Blackpool, all of these different places in the room. So we went okay then great, that sounds like a fantastic idea. So everybody thinking of the hub, and we had I think we had about 12 people, uh 12 organisations, and and 10 of them went, Yes, we want the hub.

SPEAKER_00 27:19

I went, right, it's a hundred grand for the hub. Alright, oh you've got maximum 30. Oh okay, where do we get the other 70? No, no, no.

SPEAKER_01 27:33

We also gotta pilot it. Is it gonna work? Well, of course it's gonna work, it'd be really great and everything. Okay, great. Where's the hub? It's a physical building. Where are we putting the hub?

SPEAKER_00 27:46

And we have people like I say in Burnley, Blackpool, Preston, Burnley, you know, uh black uh Blackburn, you know, all of these different places, and they all wanted the hub in their place. We can't all have the hub because that'd be a million pounds, and we're playing with 30. And that's not understanding the KPI, they knew what they wanted.

SPEAKER_01 28:10

They all wanted this hub, but they hadn't thought about all the other things that came with the hub. They hadn't thought about where that money's gonna come from, they just thought, well, we'd use the money for the hub. But then it came down to location, where's the hub gonna be? Well, they all want it in their place, obviously. There's no point in having your hub in Preston if you live in Burnley and your people don't drive. That's just stupid. You want it in Burnley. You can't have it in Burnley. So what I ended up doing is we it once once we'd looked at the logic side of it and everything, is how can you break that down into maybe a virtual hub to start off with to test a lot of the things, maybe some place-based stuff and everything, how that can work. And that those 10 people splintered into different groups and and none of them came out with a hub. What they ended up doing is they came out with three different projects that had a social rate of return of 4.2 million quid of savings to the NHS and the government on 30 grand. The other 20, because I always say 50 in the thing. The other 20, if anybody was interested, was using it for how we use the training, how we use the placements, how we we paid people for attending the course, you know, all the different things. We've had experts on there, we did you know, pitching, we did all this type of stuff, grant funding, we did all of that type of stuff. There's the other 20. But we had 30 grand and each project got 10 grand. We helped one of the other projects get a little bit more money because of some of the stuff that we're talking about, but we the 10 grand and the social rate of return was 4.2 million quid. And why that's important and why that applies to this is that is the understanding of each side. They under we understood what they wanted, and they understood our drawbacks and what our what our requirements were at the same time, and together we created something amazing.

SPEAKER_00 30:04

And that's what it is all of these in the workplace ones are so important.

SPEAKER_01 30:09

Ocean of is working together with you, and your employer together to help you overcome the condition management-wise to help you get benefits out of it and help them get benefits out of it, and together can create something brilliant. So I really appreciate your time today. Uh, our next uh video, we are back to uh behind the edge. We're gonna go back to the audit, we're gonna do episode three of the audit, and uh anybody who's who's not doesn't know about that one, that is where I break down my uh workplace uh assessment uh called uh CEDA, a comprehensive assessment guide, uh sort of thing for workplace well-being, on uh looking at the different strategies of how to um support people with chronic health and things like that, and isolating your risk areas. And that we're on episode three for that, so we're gonna be talking about that. Uh, then we're back to our CKD inclusive workplace uh for the employers where we're gonna look at data return on investment and all of those types of things. I you need to remember that that you know illness is not a burden, as I said, and it is time, it is time again, it is time to unleash your edge in your work, in your business, and in your life.

SPEAKER_00 31:40

I appreciate you very much. Share, subscribe, thank you. Goodbye.