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I would also just take a moment to do a shoutout back to Lovely who? And although she has retired as a GP and continues to be a single e champion on to teach, some associate professor does more than thought work running and supporting the charity on. But she doesn't yet haven't Oh, be, But she should watch that campaign. I would say. That's, um you could argue with the box one of the most important talks. Now, from the patient perspective I need to kill. And I was previously a community nurse and self it before your health deteriorated. You still manage to work with the the NHS, and I've heard you speak before. It's always a powerful on court with baking experience. I thank you so much for being here and doing this for so thank you for having me. Yes, that was a really lovely introduction. Thank you. Yeah, I'm Anita Canon. Uh, well, a day with lots of okay. It's lovely to be invited here to talk to you today. Um, I've been asked to talk about the impact of pots and adjustments for work just on the basis of my experiences as a patient and in employees. There is probably helpful to give you a little bit of context about my background on my journey with pots that a healthy childhood, normal, active teenage years involved in lots of sports, best inactive. But from around the age of 16, a started develop lots of symptoms. Mostly, we couldn't unexplained collapse is lots of light headed spells, increasing exercise and tolerance. So I have a number of different investigations over the years. Um, started up in being advised. It's probably anxiety. Teenage hold owns kind of usual, um, did procedure postural hypertension diagnosis in 1997 when I was at university and need castles on later, when I wouldn't do my Ms training and little I was advised I had the nine Sinus tachycardia, Um, in 2002. But nonetheless, regardless of the diagnoses that have continuing symptoms, which was starting to affect minus training in my early district, nursing career is becoming quite tricky as I was obviously the personal impact on my on my normal and socialize every time it became more of them than increasing disability rather than just a selection of symptoms on the impact became much more severe so the severity of each of those spells became much worse. Um, 20 to 30 times a day. Every time I kind of stood up a while, stumping prepared of time. I would get those really strong lightheaded episodes postural hypertension type of soap, but also and I have been painting symptoms is prepared to earlier, including collapses to the floor. Very, very rarely lost consciousness. I could always hear what was going on, but I just couldn't always respond on standing tolerance was much reduced less than a minute or two before we get those kind of severe chest pain symptoms. What's the tachycardia? Um, breathlessness. And then I started to get new constant could be symptoms as well, which brought in a whole new round of difficulties, because obviously it's quite unpredictable when you gonna cough or sneeze, and I was nearly passing out on those occasions. Also, things like looking up, stretching your knee or sorts of seemingly run them at the time of conception, and then the increasing heat and exercise and tolerance. They're particularly moving from a cold environment, so hot environments become very, very and lightheaded and being quite right and needing to sit down to your better Lots of got issues. Brain part, pretty lots of the symptoms that you've already heard about in the previous presentations. I really I don't about with my suppose so received of the actual provisional pots. Diagnosis was in October 2007, which point, unfortunately, almost my driving license because of the unpredictability of those symptoms of the time, it was not really a pathway for treatment, and there was no medical professional. If you tell me a time, how could get better. Eso unfortunately, lost my license about point. Onda had migraines up work because of the level of disability and obviously, as a nurse that was needing some support myself on gun able to care for people but successfully redeployed by every 2008 was a difficult time. But I didn't move into a night just commissioning. Well, when I had some reasonable just wants to help me with that, uh, the actual pots diagnosis was component just down the road at the National Hospital for Neurology after the birth of my baby. Um and I have a diagnosis of parts and, like syncope, enjoying time with the Centrum. So they're followed a treatment plan. Um, from 2000 and nine on words. I had a lot of treatments that we just heard describe. I am my left me Earlier, the non pharmacological measures the compression hose recently sodium started the extra salt in the diet and oxy Lots of liquids on lifestyle changes. So no alcohol, lots of early nights pacing and so on. Um and then some treatments of bleed a cortisone, which I had had previously but had greater effect when we have a slow sodium in, the military added in. And then over some years later, I was able to try the octreotide injections, which were a game changer for me in the incumbent, a shin with an exercise rehabilitation program that I was really fortunate. Um, she talks I set the time under a local cardiac rehab team up in there, so I have them. Energy conservation support of fatigue management's, which is an occupational therapist, really helped me with that and cognitive behavioral therapy just to help them to manage living with this condition, which was quite disabling on get quite isolation at the time. Um, so I was discharged back to my GP in just a couple of years ago because I've been able to reduce quite a lot of those medications over the last 34 years. I remaining stable at the moment, just on the adrenal and slow sodium. Um, happily, my driving license would re approved in 2018 because of burns. A stability of all my symptoms on Day 30 is much, much reduced on in the last couple of years. There's been probably a really positive impact for me of the increased in home working, which has really helped me to manage my fatigue. So my eyesight is now a much more like me to be weekly and head rush type symptoms, but more monthly in terms of actual classes or on a collapse. So, yeah, I'm giving a published since I was 16 and I know my mid forties, and I have not felt this well in about 20 years. So it's one of the questions about whether patients come get better. I hope that is a little bit of a a good news story. It's not going away a little bit of managing. It doesn't dictate my life in the way that she used to. So in the context of that big, big change over such a long period of time. It's quite helpful to talk about the impact on my work because I think we can all agree that that working and having meaningful employments activities a hugely important parts of any money. But for all of us in any patients and cattle, um particularly those with long term conditions on Dunder standing. My condition, when I finally got that diagnosis really understood what was going on, it really helped me to understand what I couldn't couldn't go home and have a focus on the things that I could still do. So actually, nursing for me at that time became impossible, but I was able to accept that. But so when I really had mustard, my condition them and was able to use the skills in a different way and make that like changing decision on which was really sad. But, you know, I was able to do that to try and move forward. But I really want to stress that, you know, everyone will be able to make such decisions whether it's financial or personal reasons or they're not there on that journey. So I'm absolutely not saying We have to have to change careers with the pots diagnosis, but for me it's just my personal story and where I was at and it's actually helped me moving forward to to have not been suddenly in it in a job where hard to stand up all day or get up and down all day, So I'm just making a change. So what's enabled me to help myself get better? It's also important to recognize that parts of the syndrome as we could. There's lots of different presentations with predominant symptoms from on. But because of that, people will be able to continue successfully in their own jobs. Lot of people will not need to leave work, but equally, some people have such severe symptoms that they come out work. And I absolutely recognize that I'm all the shots well on the world on quite a different journey. But just once a shot, some of things that help me intensive work along the way, including that good clinical support and the effect about after care. So having more pots, awareness and clinicians means it's more likely to be recognized early has we've seen, and that might reduce deteriorations topical just mentioned earlier. And that, in turn, might mean we have less time off work and the spiral of being off work in the effect on mental health and self esteem, and maybe maybe reduced on it until I was out to person center rehabilitation and support, not just the medical treatment with, um, with different drugs that are available without more holistic way of supporting patients they didn't offer make. You're having that diagnosis, but it did help, um, me to get the access that I needed as an individual. So some examples of that occupational health could provide some advice to my employer because they could say what was wrong What? But it's likely that I could or couldn't do, which really supported me without redeployment about really difficult time in my life. And it helped me since then went in requirements and promotions. I could make a knack Sesto work application on disability employment support. But for me, this involved causing some taxis to from work for a number of years, and that was because the severity of the symptoms which happened when I be something and accused I what was taking for both supper but transport was really difficult standing on the public transport. You can't guarantee a state managing the temperature change from the colds or hot bus, for example was just really impossible when I was so unwell on. But the frequency of collapses that was having was very vulnerable about the real safe by myself because I was just constantly, um, collapsing, feeling very well. So once I was in work and I was able to get to work, that was the first step. But then I worked in partnership with them a GP, the occupational health and my consultant, so that could document my my needs and how. And these could be met with reasonable adjustments. But when I was deployed in 2000 and eight, so some of these are really simple examples. I hope it's share them in case it's useful. The things that really helped me with my occupational health to stimulated that I needed an office chair with and had a non support when I felt a bit painted could sit down. I feel safe. It's just a small thing, but makes such a difference. Just like having a seat here today just makes that difference for me to be able to be here and do this having a stool to raise my legs under the desk. Just help with the circulation. Um, placing a seat next. Photocopiers back in the days when we did a lot more and paper like things and so I could sit down, just dump a long periods of time, just doing some of the tasks that was doing about them. I'm having a desktop printer for the same reason. Didn't have to keep getting up and down and triggering all these spells will be it. Moving around is important, not going constantly getting up and down for me, having a deskbound sitting somewhere cool on to keep temperature control. Use a lift that work for safety reasons on rather than stairs because attack point in my life climbing stairs. I don't have to crawl. It starts to be honest, world inclined. I'm working from home. Once we started to get laptop so I could work from home. A day wouldn't really help with the fatigue management and, as I said and increased working from home, it's really helped in recent years and having some flexibility with work. How is the needed short rates were eating or drinking or obviously that have a bit, um, I could make up time later, and that would be sort of down home. So another thing I did a chaste about a care plan on Probably, I guess, with my nursing background, it came a little bit more naturally to make you want to do this. But it was three million reasons, and it was to try and avoid undue concern or anxiety and other people who have witnessed those kind of spells and not know what to do. You feel quite panicked if I was on the floor on or feeling unwell. Family eyes all around the head, hanging onto furniture. Um, you know, we got it, but you get the chest feeling like amount of breath and people would worry, and that's natural. And then I didn't want people to panic. Um, so describing what actions would help me and people did want to help was sort of the way that they knew what to do then. So just bring me a large glass of water. Having a chair nearby was on the floor so I could get really slowly rather than one big move. Um, slows that kind of things, period. Not asking me lots of questions. Straightaway is people who came to help that actually can't think straight. Can't get the words out. I have the brain phone. Um, the words just don't always come out. So if they know what to do, that really takes the and the anxiety away for me, which is the third point, enabled swift recovery because I wasn't worried that else is worried on, um, it just help me recover much more quickly because there's nothing more disconcerting and hearing people say it should have called numberless. And then you had to think And please don't call the ambulance. Um, fine, but you can't get the words out. So many many weight places do offer things cool, well, being action plans or sometimes called workplace wellbeing toolkit some. It's always worth advising your patients to to look for those things because they could just document that help people do a similar thing to document. What you need is our that would help you to maximize your wellbeing in the workplace. Um, and how? When you know, Obviously the results of that is it's great to Productivity's Um but it also enable that conversation with line managers which could be quite sensitive in quite difficult to times. So I obviously had a really good experience myself within the NHS. Been really looking? Um, but I do know from member of the work you do with possibly K with the volunteers and the support groups and accepted stability groups on depart up that there are often quite a lot of barriers to working Well, um, and some of these are having an effective or inconsistent implementation of the quality acts, corporate policies or values. So where organizations say that they're all about compassion and respect. But it's not felt on the ground my stuff and having a lack of individualized support, which I mean just listening to stop. I think that's a really, really important point that the person is opening the expert in their own condition on day. So you know, like managers need to not make judgments about what they think is the right thing to do. Actually talk to the person who's got the condition of trying that for my understanding, rather than make a judgment there. It was up in reduced employment or recruitment opportunities for people with disabilities. And sometimes that's conizations expectations that I'm a sense of coming to be seem to be doing being present in the office or that you need to travel across states. And hopefully, some of those areas are starting to reduce now as a result of a lot about that kind of home working in different ways of working during the pandemic. But on do Sometimes it's the impact of pain and fatigue and medication side effects. All that kind of uncontrolled variable symptoms really impact on people's career ambitions and confidence. And so it's important to acknowledge that really supports that. And sometimes there's been problems it previously agreed. Adjustments not being almost. That's why occupational health can really help but also like managers themselves. And so what has been an organizational restructure? It could be really anxiety provoking thinking. Am I going to get that same support? My monitor changes Onda having an inadequate support from GPS and clinicians on. We know that everybody is extremely busy, but sometimes those kind of delays with sending referrals, all the reports that employees it's need on the lack of bone joined up their pathways come really impact on people getting back to work, Um, which is obviously what we will would like to do, ideally. So for me, the impact of reasonable adjustments and having reasonable line managers has enabled me to continue and just employment for the last 20 years, which is I'm really proud took them, and and it's enabled me to get in permissions. And despite the fact that was collecting frequently throughout the day for probably a decade of that time some and have minimal sick time. And that's because of the schools I was given in the workplace. Um, my monitor strongly believes that helping disability it needs are supported than compassionately and with reasonable adjustments than that individual work performance will follow and you will allow status thrive on, you know, in spite of the disability. So you feel empowered to do well into the you know, the focus is on the work outcomes and on on the condition whether its parts along Riddle or any other conditions we put out today. So in in his words, my my manager said, My responsibility is to help create an environment with in which you can reach your potential that does not mean an environment which is seems usually less capable or productive than anyone else but which is necessarily individualized. Employees need managers. He will listen, take action and lead by example. And the support of decline manager has been a necessity to May. Reasonable adjustments goes way beyond just having a policy or writing things down, but it's about really supporting you. Stop making sure things happen and many clinicians here today. We'll also be line managers or have teams. You'll have colleagues we got long haul over to that may have parts, and you can advocate for them to really help them and make some adjustments and help maintain work where it's possible, and then the previous experience and keep them well. And so that's my question to you is that you are a manager? Have you discussed these things with your stuff? You have long term conditions or disabilities, often the things that people need our mind of changes. Unless I mentioned earlier some of those examples and they can have minimal or little impact on the let's just changed in ways of working or environmental changes in the office space and those those kind of steps will be really like changing for the employees he will build, valued and included and inspected, and the impact of this only mental help of what self esteem. And it just can't be underestimated. So, other clinicians are you supporting your patients? Teo be able to express their needs and to gain that workplace support that they need. So lastly, just in summary, how deep Eason clinicians can I'll help. Firstly, of having the awareness of parts is a great little summary on not seek a website. It's a GP guide. It's just really easy Teo Shower amongst everyone so that people are more aware of what's which is the first the first step in getting that early diagnosis on? Because I did read that it takes an average of seven years to get a diagnosis a lot more in many people's cases, I'm I'm having that were a smoker. Pots on the links with all these other conditions. A list done loss, chronic fatigue syndrome must sell, um, on autoimmune conditions and of course, long pope it and so picking it up early, we can really help to prevent that deterioration. That spiral effectively is, um with employers never mentioned before and being a good employee yourself. If you have staff reports, stick with me on this journey. This is afraid. But somebody said to me recently, and it really seemed to capture it for me because I was a person with medically unexplained symptoms of it was called, and these can be explained, but syndromes and hidden disabilities or mental recent difficult, like I spoke to you, a slip ins and obviously the patients to to manage. But yes, that stay with your patients. Words matter. Be really mindful of the impact of language with your patients who were really struggling through that that journey and, of course, kindness. Customer buying. A lot of those examples of adjustments didn't custom thing, but the outcome for me personally was like changing. So thank you to all of you clinicians who are helping people like me. Thank you Need to ask you if there was something that health care professional is they said to you earlier in your journey would have made a really difference view. So is that something that I feel the conditions could very healthy share, And here in the patient journey, that could be helpful. Um, I think it's that sense of being believed that husband brought up earlier because some of the things about the words that matter and that kind of thing, that seeing health professionals who expressly said to me I'm not interested in your condition or give you that sense that you might be just, you know, anxious, a little, making else, somehow so actually really believing those patients are making them feel hurt, I think is the first step to can't resolve all the problems I'm. But actually, you're just feeling that you've got somebody with you on that journey. Have been some things they just Yeah, just try and try and show the patient that that you believe them in that you hear them and that you're gonna try and work with them. So that's the bottom of these problems. You got a question on the top independent of language way we have a lot patients asking is about what's being recognized. This a disability. What's your experience? Tons of patients that you communicate with? Yeah, I think some people don't have, um, problems of having it recognized. I think it's much it's much easier now than it Waas. I think When I first got diagnosed, it wasn't really, um, heard of which I had always different diagnoses along the way. But yes, certainly some people are struggled to get that recognition. But I think in line with a lot of syndromes, whether it's not always that much clarity, I think I think it could be it could be hard because people don't understand it. But you know, they know what other certain particular conditions could be, but not always what this means, but the rather you know, obviously with me dot okay and all the information that is now available being able to sign post constipational health or doctors or line managers, however, to to this source of good information and support and the disability access. And that really opens up the doors. I think for patients nowadays to be able to say it's it is absolutely a condition. It's a definite thing and found that question is official definition somewhere. Uh, I'm not understanding. You mean what parts is our parts as a disability? So I think the impact of parts could be quite different for different people, can't it? So the what was disabling for me with the lack of independence, I guess because I was in the vulnerability of collapsing so frequently. But others they may suffer with constant nausea on Does kind of symptoms do it? How it comes out in different people might disable them in different ways to be able to do different things. So it it's quite individual and thumbs the story. The question that was kind of Internet was in terms of disability benefit. We get a lot of patients asking us about that side of the to set. It's no coincidence it is the disability that's wondering if you'd stop. No, I mean, um, maybe others are able to tell that as well by them, because I've not had to apply for benefits have not gone through that that have come across people who have big pier support groups who have really struggled with things like Pippen applications and because trying to evidence that chronic and long term impact on the activities of daily living is one of the issues around. Having a disability isn't And when you've got very barium conditions, that can be quite hard to quantify, you can speak to some of that s so I'll get that done, and then I'll pass it to you because I saw you. It is so I'm I'm I'm a nasty, but I don't tell. It's working parts. But I'm a parent of somebody who is now 25 with pots, and we've been part of that journey that's going on. Accessing services in accessing whether it's it's s a or pig is I wish I could swear I can't swear, but I'm not going to, but it's in awful. It is a absolute nightmare because you were not believed because you are young. You don't look black with your condition, so you really have to prove your case. And it is just so I know it's so many people who stop. They go for that first round of paper and then they get told, know, and they just don't have the energy because there's no well to get to the mandatory review on they get to the tribunal, and it only started by the time you get to the tribunal, then you finally get that. Yes, we're being believed, and then you're gonna have to do it again in three years on that, China's some people who don't go back for the three years because they can't face that cycle again. It's bad enough feeling the way you feel without having to put it all down on paper and then and then stand up in front of us, sit down in front of people and try and explain it. So I think anything that healthcare professionals could do to support Now I know it's very hard because you can't do that. But even just on understanding of how challenging it is on another, But I'll say so when you see patients and music. Oh yes, they're symptoms have improved writing something like symptoms have improved on a letter is great in some ways on then. It's absolutely awful when you need to use them. So it might be that your symptoms were two out of 10. That was your capacity, and now it's three out of 10, so they may have improved, but they are pretty still pretty shocking on, so it really is if you can. If you want to help the patients that have that with white complex disabilities, writing symptoms greatly improved really doesn't help us, it'll if that's all right. I also, um, have some words wisdom for are absent Oracle Leslie that you know. So who's just asked me to mention that? You know that, as you intimated on bit of whether a person meets the terms of the disability active pens on the individual. But there is a definition on the DWP website that can help guide with criteria. With that, Yeah, well, I'm I'm Dr who sits on, you know, pick decisions. Income. It's pointed out suspicions related benefits on. So I see people that end of the journey when they being turned down by DWP. But a condition doesn't actually have to be recognized. It's dispiriting you to the park up it or being so supposedly. It's all about how your level of functioning the problem is the descriptions that you used in the way they work. It could be very difficult for people school points, and I'm so that's that's where people come down on on also the people that are assessing them by the needle. People often don't recognize conditions and arms and a d p. I never get off Crestor part right letters and then something very due to know what to bite. And I think if you come if you if you have a knowledge, a good knowledge of that patient and how it doesn't that that condition and how they are disabled, why, I think that's really good. If you can write that down, I'm not advocating that you like for everybody necessarily. And it it could be very difficult, but I left it where and, you know, he may just say on this patient tells me, doesn't really hold much weight. But if you know that patient something supportive, Yeah. Last thinking Hello? I'm actually a pediatric physio, So I'm really came to know about your slightly earlier journey. It was nice to hear that. He said you got soft diagnosis announce at 16, but actually, the challenges that we find are that you got into the workplace and there are those things in the work place on. There are special educational needs supports out there, but actually getting it if you haven't got that kind of night, not sick thing in getting it. And the a C p, which is an educational healthcare plan which ports a younger person to fundamentally get to where you want to to be able to get a job on it stay in academia? These horrendous they you know, it's like I've got one young person with like, mobility man. She's got a list and loss. She managed to get any HEPA, and that is like mind blowing. But there's so many other young people that I work with that can even get like healthcare plans, which are that kind of really basic, low level off, just a nursing support within a stack to make environment and the same Kobe glee getting involved like, What's your kind of feelings and thoughts and actually be intrigued from the port society to get? I'm going to release a meter from that question because it's a very well time to question because I'm next speaker is absolutely on topic with this way.