Chronic Hand Eczema (CHE) Podcast - Part 3 - Managing CHE with tips from a real patient

This is a non-promotional podcast funded and organised by LEO Pharma for education purposes. 

The Chronic Hand Eczema (CHE) Podcast Part 3: Managing CHE – tips from a real patient

This non-promotional disease awareness podcast is intended for distribution to UK healthcare professionals (HCPs) and members of the public. 

Release date: 22/05/2026
Duration: 39:18
Produced by: ODLAND Education

Summary

This episode explores the complex interplay between the priorities of patients and the healthcare system with a Chronic Hand Eczema (CHE) patient, a representative from the National Eczema Society, and our host and Consultant Dermatologist, Dr Guckian. Later, we get some real applicable tips for CHE management at home and discuss what support options are available outside of the NHS. 

Speakers

• Host: Dr Jonathan Guckian, Consultant Dermatologist, Leeds Teaching Hospitals NHS Trust.
  Disclosures: Has received payment for educational speaking roles with: Almirall, Abbvie, Leo, UCB, Novartis, Janssen, Sanofi, Galderma.
• Guest: Roy Stannard, Head of Development, National Eczema Society.
• Guest: Francis Edge, Chronic Hand Eczema Patient.  

References

1. LEO Pharma and Allergy UK, 2023. The Chronic Hand Eczema Report. [online] Available at: https://mc-df05ef79-e68e-4c65-8ea2-953494-cdn-endpoint.azureedge.net/-/media/corporatecommunications/uk/our-responsibility/supporting-patients/che-impact-report/the-chronic-hand-eczema-report---leo-pharma-allergy-uk.pdf?rev=81e7456b8ca44db5bbec2d2ca48f6f13&hash=7B270B7BEE21C24395DCB0E5F4844682 [Accessed 6th of February 2026].

Adverse event reporting (UK) Adverse events should be reported. Reporting forms and information can be found at https://yellowcard.mhra.gov.uk/. Adverse events should also be reported to LEO Pharma at ukdrug.safety@leo-pharma.com.

Disclaimers

• Discussions in this podcast were the viewpoints of the speakers and do not represent larger organizations or employers. 
• Content is for informational purposes only and is not a substitute for clinical judgement or guidance. Please consult a qualified healthcare professional for any advice about your own health. 
• Contacts for medical information: medical-info.uk@leo-pharma.com

Notes

• Links provided in these notes are to neutral, non-promotional sources.
• Music credit: “This Ambient Music” by V. Starostin (aka original_soundtrack), licensed via envato market (Item ID: 57098520). Used under license for this podcast. Not for reuse or redistribution. Source: https://audiojungle.net/item/this-ambient-music/57098520

MAT-92397  / May 2026

Transcript

SPEAKER_02 0:06

This is a non-promotional podcast funded and organised by Leo Pharma for education purposes. Hello everyone and welcome back to the Chronic Hand eczema podcast. In this episode, we are going to look at the patient perspective and then look at a little bit at systems. So today it should be a chance for listeners to hear some patient opinions on what the NHS can and should do when it comes to managing patients with chronic hand eczema. So to do so, I've got a couple of guests to chat to. First of all, I've got Roy Stannard, who is the head of development at the National Eczema Society. Hello, Roy. Hello. And I've got Francis with me, and Francis is a chronic hand eczema patient. Hi, Francis. Hi Jonathan. Thanks for having me. Francis, I'd like to chat to you first of all just a bit about your own experiences. Can you tell us a little bit about yourself and your own journey with chronic hand eczema?

SPEAKER_01 1:07

So I, like many eczema sufferers, have had eczema from a very, very young age, from sort of when I was a child, sort of really quite severe and all over and you know quite prevalent on the hands. So I've got or have had the sort of classic symptoms of cracking skin, very dry, sort of oozing. So I was sort of diagnosed with this sort of form of eczema from a fairly young age. And then I had a sort of slightly different form of hand eczema, sort of around September of last year, which is something called POMFlex, which is sort of symptoms where it sort of forms sort of porridgey, dry spots on the hand. So that was a nice new fun development that sort of I came across sort of slightly later on. So it's been very much a constant journey, like many other people like me.

SPEAKER_02 1:52

Absolutely. And we do hear about that constant nature of the journey and and and the unrelenting experiences when we speak to patients with chronic hand eczema. I want to go back to the start. When you were first diagnosed, how did that feel?

SPEAKER_01 2:07

One of the first prevalent feelings when I was young is I couldn't quite sort of understand why I was suffering from this condition, my three other siblings weren't. So I suppose the first instinct was a slight level of relief, knowing that it wasn't something that I was specifically doing raw. But then as one gets slightly older from sort of the young age up until the teens, you don't realise that this is a lifelong thing that you have to manage. So there's sort of a relative level of anxiety that sort of comes with that. But upon media diagnosis, it was relief, and you know, over the years a greater understanding as of sort of the condition and triggers sort of aided in that relief a bit.

SPEAKER_02 2:42

Sure. And do you think at the time you were given enough support and information to explain and manage that condition?

SPEAKER_01 2:51

It's interesting. At the time, I suppose yeah, I suppose so. It was a fairly common feature of people who have asthma and sort of peanut allergies. So it's it's fairly sort of well understood within children, and the idea was that it was potentially something I was going to grow out of. So yeah, so I had a fair, fair understanding of it, and I had a fair, fairly sort of robust routine as to how to deal with it, you know, in regards to washing and moisturizing and application of sterilizing and so on. So at that point, yes, it all made particular sense in regards to what I was dealing with and how I was supposed to deal with it as a result.

SPEAKER_02 3:26

Sure. And you say at that point, and obviously you mentioned how your condition has changed over time, did that feeling of support or or the need for support or your satisfaction with support, did that change over time?

SPEAKER_01 3:39

Yes. And that's mostly because once you get to a point when you have a strict eczema routine, and as you as you grow up, you have sort of different difficulties that you have to deal with in regards to stress or you know, other sort of triggers that I found out later, such as alcohol and things like that. And so when you're faced with these new sort of difficulties in dealing with your eczema flare-ups, and then you go back to the support that ends up being the same for something that you previously got for some less exacerbated situation that was mildly frustrating, sort of, especially with stress, because that's very big. Very big trigger for most eczema sufferers. So to be sort of throwing the same creams and same steroids to a problem that was caused by something else. It felt like there was a slight disparity there. And it still does to a certain extent.

SPEAKER_02 4:24

What what has been your experience more generally navigating the NHS for the treatment and management of chronic head eczema?

SPEAKER_01 4:31

I've got to a point now with my GP where I sort of walk in and I say, This is what I need, please prescribe it. But that's been a long journey to get to that point. You know, my medical records are probably littered with constant prescriptions for certain medications that I'm using. But as I say, that was a long journey to that point of GPs being reluctant to prescribe steroid tablets or steroid creams that I knew would works, or constant experimentation with different moisturizers. So my sort of general experience with GPs is that there was a sort of misalignment in what strategies they actually sort of knew would work, and it's a lot of sort of trial and error done by me from the drugs that they prescribed to the point that I can now tell them what I need. On a sort of dermatological level, I explained this in a meeting that I had ruined last week and a few other enchantment sufferers. It's virtually impossible to see a dermatologist when you're going through a skin crisis. I had a skin crisis in September, related to some stress over a flat move, and it was just an immense flare-up. And you know, the steroid creams weren't working, and I had to use a stronger formula. And I got referral then, and I've only, as of Friday last week, only finally got an appointment confirmation for two weeks' time. So that's close to six months. So on a dermatological level, it's quite challenging to be as polite as possible.

SPEAKER_02 5:52

I'm perfectly fine with people being impolite if needed when it leads to honesty, particularly when your skin isn't being very polite to you. And you know, patients will often tell we we we often do hear from patients regarding the let's put it mildly iterative nature of how we how we manage different the various different forms of eczema and the trial and error uh aspect is quite frustrating for us as clinicians because we want patients to have faith in us, but we can never guarantee anything. So it's it's it's yeah it it can be very frustrating, but but not for anyone more than it is for the patients, of course. I I I wanted to ask you both the this this next question really was that do you feel on the topic of medical professionals, GPs and dermatologists and beyond, do you think that we understand the impact of chronic hand eczema on the lives, the everyday lives of patients?

SPEAKER_00 6:50

Well, if I jump in, I think this is something that we worry about because from many, many people that we talk to, and it it does go into the hundreds, if not thousands, there seems to be a general feeling that the amount of training during the medical training that is devoted to experts is relatively small. In some cases, I think it consists of one day. So it's not the GP's fault necessarily, but they don't necessarily have the background and the knowledge to deal with the patient in the way that they would like. I think there's an issue around language as well that you know perhaps there's an overemphasis on cynical terminology when in fact it could be done a lot more simply. I think that that affects people who perhaps haven't got English as a as a first language, or perhaps children, you know, who really don't understand what's going on. That's just a general perception I've got from talking to a lot of people. I'm fortunate not to have eczema, so I can't talk from first-hand experience, but I do talk to a lot of people. And I think Francis has had similar experiences.

SPEAKER_01 8:02

Yeah, I if I jump in on the back of Roy that I've had a lot of GP appointments over the past five to ten years, and not one of them in not one of them did we have a conversation about sort of the mental health impacts of the condition. It it can be pretty debilitating when you're having a serious flare-up. You just the the physical implications and limitations that you have that come with this condition can lead to serious anxiety and social situations, especially when sort of you are younger and don't quite have everything as figured out as you might do when you get older. And equally you can just feel pretty depressed by the endless continuous nature of the condition when it's not treated properly. And I think, you know, in any other situation, if you walked in with accompanying mental health problems caused by a condition, you would seek and possibly get treatment, you know, whether it be anti-anxiety medication or antidepressants or whatever, or even just a referral to a support group or something like that. So there isn't a huge amount of understanding on that level to the point that it's even brought up in conversations here, a medical appointment. So yes. No, that would be my addition to all rise putting it. Absolutely.

SPEAKER_02 9:15

And I think just to address kind of each of the points that have been raised, I think from a undergraduate medical education perspective, we know that dermatology is undertaught in the medical school curriculum more broadly. And as I may have said I've said elsewhere in this podcast previously, there are more dermatology conditions than there are in every other specialty put together. So there is so much to cover. And as you know, that the the common dermatology presentations actually can manifest in numerous different ways. So there is so much to cover and not nearly enough time in what is a crowded curriculum. And as you say, well, the medical students may get one day, GPs may get one day, and that's dermatology generally. And O'Hearn East may get a week, but it's that that's that's not enough. If I have my way, then it would be all dermatology, but I think it's probably for the best. I don't have my way on that front on that front. And then just just to touch on Francis, what you were mentioning about the the associated mental health aspects. I mean, I mean completely completely I completely agree. And and we we just I did a full episode on on the this kind of psychodermatological implications of of chronic hand X Met on this on this podcast, and listeners can listen back to that. But I think your your perspectives on the support that you can get on that and the the the limitations to that are really valid. I I I find that sometimes we focus so much on the on the challenge related to the skin, the diagon the diagnostic and management challenges we forget that to the holistically, and some of that is just about familiarity with the with with the conditions and as you say, Roy the expertise. And I I I really like your point on overcomplication, because we love doing that as doctors, and perhaps me being cynically, we love doing this as dermatologists. We like to seem clever and having all of our big long words in Latin and describing things as arithmetists when we can just say red. But I I think the communication, clear communication is a real theme there with patients and with our colleagues because most GPs see the most dermatology and manage they manage all of our patients, so it's absolutely key that that we have a better relationship. I suppose you you've you've touched on this, Francis, with regards to your the implications on your mental health. But what do you think the most challenging part of managing the chronic hand eczema is?

SPEAKER_01 11:38

Discipline probably is the most challenging part of it. I explained this in a meeting that I had with Roy last week with a few other eczema sufferers. It's it's just getting through the daily routine to keep pure eczema as a manageable level. You know, it's the hour-long preparations after you've had a shower or a bath. It's the continuous moisturizing. I have a pot of dipper based cream that I take with me pretty much everywhere. It almost looks suspicious when you're sitting at an office desk sort of sort of moisturizing your hands, but nonetheless it needs to be done. You know, it's it's just that daily discipline of you've got to get through the sort of one-hour periods after you wash and every sort of two or so hours moisturize. It's a complete and utter fact to use the technical term. But nonetheless, you know, it's it it it needs to be done. So I think on that level, it's the most challenging because it's arguably the most boring, but equally the most necessary.

SPEAKER_02 12:30

Thank you. And and Roy, from speaking to eczema patients, chronic hand eczema patients more broadly, clearly because it presents differently, then different people may have different challenges. Have you encountered people experiencing different management challenges with chronic and eczema?

SPEAKER_00 12:48

We did an exercise last August where we went out to people that we're in touch with and just said, look, tell us about your chronic hand eczema. How has it manifested? What have you done about it? And we had an amazing array of information and experiences that came back to us, some of which I'm probably too embarrassed to talk about, which involved romantic interludes and so on, which proved to be difficult with gloves on and so on, or bandages. But uh everyday examples, a mother, for example, being uh afraid or unable to uh touch her baby or or to do the normal things because uh her hands were just in too bad a state to do it. Somebody else who was training on a computer at school and was hugely embarrassed because uh whenever she left the computer there was bits of dry skin littered across the keyboard and occasionally blood. And it meant that other students were uh you know disinclined to go and use the same computer. There were lots of incidents for amongst young people about uh inability or unwillingness to share dressing rooms, showers, all that kind of stuff. Uh so uh I think in work it's it's really difficult if you're if you're uh in a job where you have to use your hands extensively. A lot of people are in a position where they have to use cleaning fluids and detergents and so on. Um they literally can't do it without gloves. So it it it's a major problem. And I think it's underestimated and uh it's it's a very common problem. If we get time, I can re read you the experience of somebody who literally wrote about 500 words, which is one of the most moving things I've ever read. But we'll see if we get time. I think people who don't have it have no idea what it's like, and just imagine you know trying to do everything in every daily life with gloves on. That will give you a little sense of what of the cumbersome nature of the uh of the condition. But then imagine on top of that, an each ship just doesn't go away. And in fact, the more you uh scratch, the worse it gets, and the skin flakes and dries up. So yeah, I I get to hear these stories and my heart goes out to people in that position.

SPEAKER_02 15:15

And I I find that whilst chronic hand eczema, the symptomology is raw, you know, people feel like raw, you know, exposed and it's painful, and that's it. The stories are also raw. The stories are really real and really emotive. And I find chronic hand eczema, more than many other conditions I've experienced, bring out the the real personal narratives behind patients and how it it impacts their daily lives. And you you you mentioned a really interesting, important point regarding patients feeling embarrassed, not just about feeling self-conscious, but embarrassed in the consultation to talk about their for example, you know, you you touch on their their impact on on sexual function and and relationships, like these whilst you know it can be you know fun and jovial in a in an exercise or in a podcast, the w when we get down to the the the uh nitty-gritty of a of a information gathering from a from a clinician in a in a consultation, it's a we don't ask about this enough as doctors. And and patients are often too embarrassed to bring it up. And this is a real part of someone having a full and wholesome life. And and often that's the one the main the main reason people feel so distressed about their eczema problem or their sorrow, so their psoriasis problem, etc. You know, so so that's a reminder for any clinicians listening to ask more about the those sort of issues.

SPEAKER_00 16:42

Yeah, and I think the it can it can feed into the triggers that lead to flares as well, because I mean one woman in our research and survey came back to me and said, Look, as a young teenager, I used to go into the pub with my parents. I was wearing white gloves because of the condition. And the landlady used to call me Michael Jackson. And years later, ten years later, she went back to the same pub, same landlady, and uh she welcomed him. Oh, here comes Michael Jackson, you know. And it you know, the embarrassment connected with stuff like that is is overwhelming, really. And I think the other area that people, you know, and this came out at a meeting that Francis and I were were both in of the London Eczema Circle, that is this kind of founding group that we put together quite recently is that most people not really aware or fully confident about saying what the triggers are that lead them to feel that way. I mean, it's all very well saying stress. What is stress and how do you avoid it? You know, it's a it's easy enough to say, but how on earth do you get to the bottom of what might be causing that stress? You know, is it that annoying manager at work? Is it that is it moving? Is it too much work? You know, and or maybe it's a relationship. Uh and it's very difficult to train. But if it's an allergy, then uh you know it can be just as difficult. Lots of patch testers, but how many are there? You know, there's hundreds. So where do you start? Where do you end?

SPEAKER_02 18:19

Absolutely. And I think if we had the silver bullet for stress in this podcast, we'd get more listeners than any other podcasts ever. Francis, I wanted to just talk about a bit a little bit more about your your personal journey with that part of the conversation in mind. Are there any lifestyle changes, routines, or anything similar that have worked quite well for you in managing your condition?

SPEAKER_01 18:40

Yeah, I mean, got a few. I've had to, and these are really milder ones. I've had to avoid wearing wooden clothing because that that's an irritant. I suppose the biggest possibly the biggest one that's made a big difference is about 15 months ago I quit drinking, which has helped in two levels. One, you know, the inevitable word stress, it helps manage that because you're not having to deal with the sort of hangover-induced anxieties, and that's also of course quite good for sort of retaining moisture in the skin. So I've seen a fairly significant improvement over the past 15 months, but that doesn't really sort of stop the seasonal flare-ups.

SPEAKER_02 19:13

I wanted to just briefly just turn up to the systems that we have that support you and also support the wider patient cohorts. So it for both of you, in your opinion, what are the biggest changes that the NHS can make to better support chronic hand eczema patients?

SPEAKER_01 19:30

You know, the obvious one is the availability of dermatology appointments, and if that's not possible, then trying to find a mechanism to educate general practitioners more because there's you know there's a a bit an ample availability of appointments with general practitioners, but the information might not be there. But where the information is, there isn't enough appointments. So I think something like that. I think it has sort of slightly mentioned earlier, access to support groups. Like I went to uh a group that Roy runs at the International Activist Society a couple of weeks ago, and I learned more, I reckon, in that one-hour meeting than I've learned about the condition from meetings with GPs over the past 10 years, you know, of things such as some triggers might not manifest for 48 hours afterwards, something like there's only 80 eczema specialists in the country, which, you know, considering how many eczema sufferers there are, there's quite a huge disparity. So things like that. So opportunities just to have some support groups of fellow sufferers, you know, you can actually educate you a lot, and equally you can learn from other people's experiences. So uh yeah, there's definitely more that can be done, and that's why people like Roy and the National Eczema Society are are vital to sort of fill that need.

SPEAKER_00 20:39

The number of specialists is key. The amount of time each of them can give to the patient is also really important. And if you know you've only got ten minutes on either side of the table, you know, the clinician and the patient. Ten minutes. You've got to make every word count, and that takes away the spontaneity, the r relax uh nature of the uh encounter. And it kind of maybe even adds to the stress. And I think uh the the tendency to go for uh what might be tried and tested solutions in terms of the uh prescription or treatment is also an issue. Do uh clinicians keep up to date with the with latest developments and uh is it easier to go for the uh cheapest and most available option? These are the kind of areas that we think would would uh be well worth looking into because of the numbers of people in the uh country that have this condition. Uh I mean it's eight uh eight million people with eczema as a whole and and a good a good percentage with chronic and experts. It's a vast number of people. And if we look at EXPRA as a whole, it's about seven uh seven hundred, seven hundred and fifty million pounds a year. It costs the economy in lost time. in NHS treatments and so on. That this could be resolved or at least improved quite rapidly if there were more trained people in the dermatology expert space and and and just therefore a bit more time in the system. And and and maybe some informal encounters listening to patients a bit more in group terms rather than just one-to-one across a table.

SPEAKER_02 22:30

That's really interesting. So what I'm hearing are that there's there are solutions that are patient-led or patient-centred, like the groups. There are solutions that are clinician-led, so clinician education, and then there's system level issues such as under staffing essentially, in terms of expertise and and and you mentioned the time burden on the NHS with regards to the the the these patients presenting. And I think all of those are are are incredibly important to tackle my my concern is is that I can't see some of those I just can't see changing anytime soon without getting on the soapbox. We we we need we know that we are under doctored generally never mind never mind just looking at dermatologists. We need more doctors overall we definitely need more dermatologists there is good evidence around that but we're not recruiting any more dermatologists are the same the the the number of dermatologists get getting into specialty training has stayed relatively static over the last 10-15 years and there's not necessarily any push that I've recognised within higher specialty training programs to push people into the eczema space as such though there are some really there's some good really good work from the British Society in medical dermatology and and of course patient and kind of public led initiatives such as yourselves at the National Eczema Society. But I feel like there needs to be more pressures from a government and management perspective as well because we've got we we've got pressures on skin cancer weight for example in our services and those associated with very specific targets but those targets aren't necessarily shared with when you when you get to eczema or or even psoriasis for example that so therefore if there is a for example a push in a trust to push towards meeting skin cancer targets because of financial penalties that might be associated with them you then risk you know pushing out your eczema patients. So this is a it's it's multifaceted is and and and will require a team effort really across the board.

SPEAKER_00 24:40

I mean some of this comes down to medical priorities where NICE sees you know it important to put the budget and even within eczema the the eczema space then children's eczema is is perceived as much more urgent, much more important. It may be but you know it it just means that the typical chronic hand extra sufferer or person with the condition feels like they're being pushed to the back of the queue a little bit and there are b there are people whether it's other skin the blades cancer or or whatever that that maybe are treated more seriously. And that's quite demotivating. It may even become a trigger you know my my condition isn't simply important enough and therefore am I wasting people's time or am I you know taking the place of somebody else.

SPEAKER_02 25:31

Absolutely and it it feels like a choice doesn't it it feels like it's a it's an active choice as to where what is prioritized within our system. Roy I specifically wanted to ask you just about programs or initiatives that the National Active Society offer or indeed other similar organizations offer that help patients manage their their their condition.

SPEAKER_00 25:50

Yeah. Well we do a number of things it is usually the first place to go to because I think it's recognized as one of the most definitive sources of information about eczema across Europe eczema.org if anybody doesn't know where to find it. And it's got hundreds and hundreds of pages with over 60 fact sheets with lots of booklets you can download and on YouTube we've got a series of webinars about all the the most common conditions and and you know and and and things that people are worried about. So one hour long videos webinars are there available to watch and and they are incredibly helpful. They're led by experienced clinicians, professors, doctors, people who research into uh some of these conditions uh we uh issue uh uh uh a monthly newsletter which tells people what the latest news is in their particular field uh there's a twice yearly magazine called Exchange that you can sign up to join the National Expert Society for £25 a year and you get you know you get privileged access to to all the latest information. We have a a medical advisory board that is made up of experts in the field and they meet every quarter to discuss what are the live issues what could we be doing more for and we take a lot of attention we pay a lot of attention to that and take the advice and it's led by some very eminent people and we we we pay attention to that. We have a a a patient group 29 30 people that again meet quarterly and that's not the support group it's a group that we have selected over a period of time uh because of the range of types of eczema and also the the ability and willingness to talk openly about it and that is incredibly useful to us as well. So we have a a kind of live ongoing source of information from both ends from the clinical and from the patient end which I think puts us almost in a unique position. There are one or two other charities in the UK that that specialise in expert but they do something a little different. It's parents with children with expert that that they might be looking at whereas we are trying to help the individual to become an expert on on their own condition and so that they can self-manage it a little bit better with with the information that we can provide or we can signpost where they can go to get that information. So obviously things like the National Eczum Week in September we we get quite involved in fact I think we started it so you know that's something we use as a platform. But we are literally ongoing talking to all the big pharmaceutical companies about their developments about what they're doing. We're trying to pass that on to patients but also some of the GPs out there as well that may not be aware of it.

SPEAKER_02 28:58

So we we we act as a kind of notice board for for the XME community if you like thank you and you know it's it's it wouldn't be a podcast or a radio show without people I guess getting a plug-in so there you go there's a there's a there's a big one and all all all incredibly worthy work and and really powerful.

SPEAKER_01 29:20

With that in mind I want I did want to ask either of you or both of you what resources or information do you think should be more widely available to patients who've just been diagnosed with chronic and exima from a resource perspective I would have benefited when I was in my teen years when I was first started to do I this sort of myself with sort of just the appropriate sort of literature in regards to sort of just daily existence sort of subsistence making sure that your skin is as sort of moisturized as much as possible when to apply steroid creams and how because when I was a teenager I was obviously I was sort of layering on the steroid creams if it was sort of cream on top of a cake not realizing that you only have to put a specific amount in a very small area then it affects a much larger surface area around it. So that sort of education I had to sort of find myself over a bit of trial and error I think that would have been pretty useful. As well as sort of a basic understanding of what are the stereotypical triggers for someone who's suffering from chronic and eczema rather than again having to sort of go through trauma and error and think oh it might be you know it might be dairy or it might be you know certain washing powder and so on. You know, rather than just having to go through the anxiety inducing process of figuring out what your triggers are, having a sort of you know sort of coherent list relative to the type of suffering you are it would have made that process a hell of a lot easier and it would have been able to start the management process, the successful management process a lot sooner. So I I appreciate there were a lot of words there, not a huge amount of punctuation but yeah that's sort of general gist is what I think would have been useful.

SPEAKER_00 31:00

Yeah. I think it's important from our point of view to hear as many patient stories as possible. To hear about what's getting in the way of them getting the help they need. We often hear that there's not enough interaction between people with EXPA and therefore if we can help with that we will and we've created this well I see it was created outside of the charity but we've lent our support to it and they meet in our building a couple of times a quarter. And the opportunity as Francis said earlier to get together and talk about the condition in an open, relaxed atmosphere without feeling you've got a time constraint is is so important. And and I think the presence of someone like me who can capture some of the frustration and some of the experience and convey it. I mean we we go and uh talk at nice reviews on new drugs coming into the the space and we advocate for the patients so the more we hear from patients about their experience the more convincing and persuasive we can be when we stand in front of the nice review board and chief executive Andrew Proctor has done a brilliant job with that over many years now. And he's a respected figure in the in in that community. So the more we hear and I think particularly an area that is overlooked obviously and again we've referred to earlier is the psychological impact and the dermopsychology space is an area that could really be developed and I think people who have pretty much master physical symptoms and what to do there would would do really well to expand their their knowledge and and talk to people about the the the mental impact of uh of this condition which is you know it can be profound particularly the younger you are absolutely and Francis don't worry punctuation is massively overrated in terms of podcasts.

SPEAKER_02 33:05

I wanted just to we're really coming to the end of the the the podcast now and I I wanted to ask you Francis what advice would you give to someone who's recently been diagnosed with chronic hand eczema and just the start of their journey just like you were all the way back in the day?

SPEAKER_01 33:21

And I think the first thing that I'd like to say to someone like that is they definitely are not on their own. It feels like a very lonely condition when you're going through it especially you know I'm one of four siblings my older sister has it a little bit but throughout my younger years it was definitely only me. So at that point it felt like it was just a solo problem. It's not there are many many people out there who are suffering with it and they've got multiple ways of dealing with it and some of their advice will be useful. So you're not on your own and the advice is there. You know that's why people like Roy once again are very important. The second thing is when you feel like you're on top of your skin condition just remember that that will pass and it will get worse and find a way of making sure that you're stopped up on your medication and you've got a practical response to it when you need to and equally when it's really really quite bad as it is with me sort of quite seasonally just remember that too will pass and it will get better and it will improve just trust the process that you've been putting in place for years. And lastly try to be kind to yourself as much as possible. I know that sounds a bit soppy but I promise you it does work. You know it's something that you have that's not your fault and there are ways of dealing with it that could make your life slightly easier. So try not to agonize and organize as much as possible around it.

SPEAKER_02 34:33

Thank you and like again there is no such thing as too much soppiness on a podcast that we're it's good to express express our emotions that's how we have this this holistic kind of psychologically safe view. Okay just one final question to you both really and it's if you had one particular message that you'd like to highlight for our listeners whether they be clinicians patients or workers in health policy for example what what message would you would you provide?

SPEAKER_00 35:02

Well for my part it would be let's take this seriously this is a a serious proportion of the population with this issue and it's potentially an area that could be doing a lot better than it is at the moment. So i in a nutshell if you're somebody with the condition uh take it seriously but take it to people who might be able to do something about it and don't accept that you know delays that there may not be time. So advocate for what you want put yourself first don't think you're being an irritation or a diversion for the people you're talking to for the clinician I would say find out more about it. The National Eczema Society has a massive amount of information that we can send to you. We we routinely send about 26,000 leaflets out to GP surgeries every year. So there's no shortage of information and if you need advice we can do that as well. So I think on both sides from the government point of view it's always about more resource about more time about more training so we get more people like Johnny into the system I don't think you want more people like me in the system.

SPEAKER_02 36:20

I think it might might be might be dangerous for the system. Francis you've got the final word here what what's your message to the listeners?

SPEAKER_01 36:27

Interesting dangerous give me the final words I suppose what I can say to people who aren't suffering from eczema who come across someone who is don't back away too quickly. Don't worry we're not contagious the only thing you might get is some ear ape when we slightly overzealously explain our condition to you secondly to those to those people just check in every now and then it is as Roy has said it can be extremely serious on your mental health it's not just a physical phenomenon it's definitely a mental one too so check in every now and then with those friends families colleagues of yours who you know who are suffering from the condition because it is 247 sort of problem and you know it doesn't go away. So it's probably very prevalent on our minds all the time. So just you know watch out and keep an eye on each other on that regard. And to those who are who are sort of suffering believe me I understand the anxiety and frustration that comes from it but again to echo what I mentioned earlier just try and organize as much as possible. Be kind to yourself and try and ride through the rough patches. There are people like myself you're willing to talk sufferism Roy is organizing these sort of talks and the problems they do help. It's not just sort of waffle and well is me this is my condition where is them this is theirs you know it is actually informative.

SPEAKER_02 37:34

You can learn something and just to know that there are people in your physical positivity who are going through the same problems as yours does make sort of the load slightly lighter brilliant thank you and that's a a nice and inspiring way to to finish the podcast in a very supportive way so thank you so much both of you I think in this episode we have gone through your personal journey Francis and discussed some of the challenges that you've experienced and and heard about challenges that other patients experience. Hopefully listeners might pick up a few tips from seeking care getting support and also learned about some of the the similarly inspiring initiatives that are are happening there from patient-led groups like the National Echism Society. So I'm really grateful for your time Roy and Francis thank you so much funded and organised by Leo Pharma. Discussions in this podcast were the viewpoints of the speakers and do not represent larger organisations or employers please consult a qualified healthcare professional for any advice about your own health this podcast was produced by Odland Education. You can find out more about chronic hand eczema and read the Chronic Hand eczema impact report at leo pharma.co.uk