Episode 51: Thomas Smith

Episode 51: Thomas Smith

Thomas Smith is a an international consultant providing expert patient insights; diagnosed with cystic fibrosis (CF) as an infant and taking control of his livelihood in his late teen years, he is now involved with numerous patient advocacy groups that span the rare and chronic disease spectrum, with a focus on mental health. A former member of the European Health Parliament in Brussels, he’s an expert patient reviewer for the European Medicines Agency, a trustee at Britain’s biggest national mental health charity, Mind, and works for the Research Ethics Committee (as part of the Health Research Authority) of the NHS. He also works with patient organizations all over Europe, including the European Patients’ Forum, EURORDIS, and EUPATI. Combining experience of policy, clinical research, and media representation skills with an unshakeable belief that meaningful patient involvement is key for sustainability and meaningful innovation in healthcare, Thomas is a constructive challenger of the status quo. As in previous CF patient interviews, you may hear him clearing his throat periodically throughout this interview – it is to be expected!

Key links mentioned in this episode:

Thomas Smith on Twitter

Thomas on living with CF

European Medicines Agency

NHS Research Ethics Committee

NHS Health Research Authority

EURORDIS – European Organisation for Rare Diseases

EUPATI – European Patients’ Academy

CF Trust

European Patients’ Forum

Genetic Alliance UK

Francis Crick Institute

European Health Parliament

Mind UK

Dr. Gary Latchford

Tune in as Thomas shares…

  • that he was diagnosed with CF as a baby, and later fitted with a gastrostomy that he has since removed
  • that it was as a teenager that he decided to take control of his health – and come to terms with his life with chronic illness
  • that he was later fitted with a passport (similar to a central line) that enables him to get drugs directly into his system through a vein in his bicep
  • that he started taking better care of himself because he didn’t want to present like a sick person – and he now does physical therapy 2-3 hours daily
  • that his physio is time-consuming, and while it’s not the most enjoyable part of his day – he loves that it enables him to get out and live his life with purpose
  • that his CF care team never discussed life expectancy – and he doesn’t see the benefit of discussing it at this stage, because he likes to focus his energy on moving forward
  • that there’s very little you can do with CF to “feel better” – but you CAN actively improve and prolong your life despite discomfort
  • that as a young man he did a lot to either minimize and live in denial over his diagnosis
  • that the moment he began to engage with his disease, his world completely changed and he began to grow
  • that he loves being a patient advocate – and feels better when he works “on” his disease, meeting others who know what it’s like and engaging with community
  • that advocacy has enabled him to better understand life in general
  • that his family has supported him practically, but it’s been Thomas’ responsibility to engage with others in the community and find those who understand his experience
  • why it’s important not only to engage with patients in your own community – but also to engage outside of it
  • why he doesn’t believe in “tokenism” as a patient advocate, and why patient advocates should be compensated for their work – because volunteerism is, ultimately, exploitative
  • that patients aren’t more important than anyone else in the process of clinical trial/treatment design – but the idea that they are any less important is laughable
  • that his Dad is a GP, and this has helped him understand the patient-doctor relationship on a deeper level – he can see behind the curtain
  • that advocacy has helped him so much emotionally, and taught him how to advocate for himself – which has likely improved his health in general, and the level of care he’s received
  • that he has had three failed assessments for lung transplant thus far – but no transplant as of yet
  • that there is a mandatory psychological assessment that goes along with the lung transplant assessment through the NHS, and as part of that process Thomas began seeing a clinical psychologist specializing in CF – and continues to regularly, to this day, for his overall health and wellbeing
  • the importance of closing the wage-gap among millennials, and how work-life balance cannot be achieved given the current state of the world economy
  • that commitment and consistency can change your life – whether you’re living with chronic illness/rare disease, or not
  • how nourishing community can be in the chronic illness world
  • the importance of acknowledging and owning your situation if you’ve been diagnosed with chronic illness

 

This episode is also sponsored by Embr Labs, creators of the Embr Wave.

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This image is taken from below. Thomas Smith wears a plaid shirt, sleeves rolled up to just below the elbow. His right arm rests on the ledge outside a building. The sign above reads "...brough Council". He squints slightly in the light, and has tattoos on his forearm.

Lauren: All right guys, thank you so much for joining us today. I am here with Thomas Smith, who’s joining us from the UK. 

Tom: Hello, hello!

Lauren: Hello! He is a patient advocate, and a public involvement consultant, and lives with cystic fibrosis. So Thomas, thank you so much for joining us.

Tom: No problem. It’s a pleasure.

Lauren: Absolutely great having you here. And as always, we love having international guests on the show because we get a glimpse into another medical system, which is always fascinating. So why don’t we start with the basics. Why don’t you tell us when and how you first realized that you had some kind of chronic illness going on, and how it manifested for you?

Tom: I’m relatively aware of how a diagnosis with CF usually goes, and I think that my my diagnosis is pretty typical. I was diagnosed at six weeks old. And then I lived a very unexceptional life. The first hospital stay I remember was, I think, the first one I had. So, I was born in 1988. And for some reason it stands out, but before 15 or 16 [years old], the only hospital admission I had was on the hottest day of the year in 1997. So like I say, it was for me — probably to my detriment — not something I even ever considered until maybe 16. And then again, it’s very cumbersome. 

When people get to the teenage years, you develop some sort of level of vanity; it’s completely normal. And you just completely deny the situation that you’re in. 

I don’t really think that you’re mature enough to understand the situation that you’re in, either. So even when I started to have hospital admissions, I really didn’t think about it properly. And then actually, the first time I thought maybe I was going down the drain, so to speak, was when I had my gastrostomy fitted. It’s like a feeding tube. Which I no longer have. And that was ultimately the first positive, difficult decision that I made to start looking after myself — because it’s optional. These procedures aren’t forced upon you, really. They’re advised strongly, but you don’t actually have to do it. So I had my gastrostomy fitted when I was, I think, 17 or 18. I wasn’t looking after myself properly. I was doing — A levels — is what we call it here, the basic education that you have between 16 and 18. So I was doing quite intense subjects … biology, chemistry, English literature, English language. And I was also drinking a lot with my friends and stuff, and just burning the candle at both ends. And ultimately, definitely denying the situation I was in. So that was the hardest decision I’ve ever made. But looking back, it was pivotal. And that’s when I really thought … yeah, you need to do something about this.

Lauren: So what steps at that point did you take to take control of your health?

Tom: Well, I think simply deciding to have the procedure, agreeing to go along with it and stop denying things. So that was the first positive step. It was enormously difficult. It completely brings you back down to earth when you’re (a) that frail that you need to have it, and then (b) it’s completely not normal to have a feeding tube inserted into your stomach from the outside. It’s shattering, but I think I needed something … it was irrefutable … 

You can’t really deny your situation anymore when you get to a fork in the road where you might need to have a feeding tube fitted. 

And then maybe 12 months later, I had a passport fitted. Do you now what that is?

Lauren: No, I don’t. I only know about passports for traveling! So tell us about that.

Tom: Because I was having a lot of treatment … there’s a large volume of antibiotic drugs which can be toxic and irritate the tissue around peripheral veins and they become blocked. It’s a complete pain in the ass. I had the passport fitted. It goes into a big vein near the heart, and it’s actually in my right bicep. And basically, it’s just a way to get large volumes of potentially irritable drugs into your system to make you better. It also is good for blood withdrawal, as well.

Lauren: It sounds like it’s very similar to what we would call a central line here in the States.

Tom: Yes, a lot of people have them in the chest. I wasn’t offered that, I don’t think; I just have it my arm. I’m not really sure how typical that is. I know that some patients have central lines. Some people seem to have more peripheral ones. And then I think, after I had that fitted … that was, you know, two big things. And then what happened? I think I must have been maybe 19 or 20.

Lauren: Early days of uni.

Tom: Yeah, well, I didn’t get there. I have two degrees now, as a mature student. But I didn’t finish my A levels. I had the passport fitted, and then was in a long-term relationship with my first girlfriend. She’s very nice but we just sort of grew apart, so we split up. Obviously you hurt when you go through a breakup and stuff, and it all came down to … not wanting to look like a sick person, because I was having lots of routine admissions when I was with her … and then, as petty as this sounds but it’s very honest …

I didn’t want her to know where I was if I was in hospital. I didn’t want her to know that I was in a sort of captive environment. 

So I just started doing my physiotherapy, every single day — which I didn’t really do before that. So now I do it between two and three hours a day. I must have missed maybe 15 or 20 days of physio since I was 24. And I’m 31.

Lauren: What does the physio consist of on a daily basis?

Tom: I breathe in hypertonic saline. It’s archaic, really; it’s medieval. It just makes you cough.

Lauren: But the idea is to loosen the mucus that’s building up.

Tom: Exactly. It loosens secretions. It does have a mechanism; it’s not simply an irritant for your throat. So I breathe in that solution; it takes me about 15 to 20 minutes to do that. And then for the rest of the time, I do breathing exercises and coughing, and postural drainage and stuff so you sort of orientate yourself differently. It’s a huge burden. That’s the worst thing about my disease at this stage of my life.

Lauren: It’s time-consuming. It sounds like you’ve got to plan your day around it, really, either getting up early to do it or stopping in the middle of the day. Are you doing it throughout the day at different times, or are you just sort of lumping it?

Tom: For me, I love the feeling of being out for the day. I do it first thing. I usually wake up at 8. I do my inhaled antibiotics month off, month on, month off, back to back. So it depends what antibiotic I’m on at the time. But generally I get up at 8, start physio and do it till probably around lunchtime-ish. And then I just love the feeling of … right, now I can do the things that I want to do. Now, it’s just after 8pm for me here, and I’ve been out all day — doing work and working out and stuff like that. It’s a huge failure; it’s the biggest problem! It really is.

Lauren: And it contributes to fatigue, as well.

Tom: Well, for me, it’s not tiring. It’s boring! I definitely feel better when I’ve done it, but it’s just so time-consuming. I think it probably almost certainly can be tiring for some CF patients. But it’s not for me at the moment. I just love getting out and doing things that are interesting. And the amount of time I spend on YouTube is insane!

Lauren: That’s fair enough! You’ve got to keep yourself distracted, I suppose!

Tom: Absolutely. 

Lauren: You mentioned that you really started taking better care of yourself from your teenage years onward because of the feeding tube and everything else. What was that like growing up, knowing that you have this chronic degenerative illness? Were there discussions about mortality, and has that affected the way that you’ve lived your life, as well?

Tom: They weren’t direct conversations about mortality. I think when you come into contact with your CF care team, you can’t really escape it. They never talk about life expectancy and stuff. It’s just kind of out there, and you sort of come across it and you pick it up. But for me, it never played any part in my attitude and approach to my disease at all.

Lauren: You were able to not have to focus on it.

Tom: Absolutely. I really don’t see the benefit of it. I think even now, I’m an engaged patient, a very active patient. And it doesn’t motivate me. It’s not part of how I live my life. It’s not how I was raised. 

My dad always used to say to me when I was kind of down about things … he would say, getting upset is not going to change anything.

Lauren: It’s a waste of energy.

Tom: Absolutely. Whether you like it or not, this is your daily routine. This is what you have to do. And you have to get it done. And it’s so habitual for me now, that actually, I’ve maintained my health. It’s worked. A lot of work, but it does the job.

Lauren: But you’re putting the work in and you’re seeing the results, obviously, because it doesn’t seem like you’ve had any major relapses where you’ve ended up in hospital for a while now?

Tom: Exactly. 

I’m sure anyone listening with CF will know, there’s very, very little that you can do to actually make you feel better. But you can buy yourself time and stability to have a more interesting life that’s less centered and focused around your disease.

Lauren: Do you find that’s also an identity issue? So many people we talk to in this community … we talk about the idea that settles in that your chronic illness doesn’t define you. And it sounds like you’re definitely in that camp — that it’s a part of who you are, but it isn’t who you are.

Tom: Absolutely. And I would love to take credit for that, but it’s simply nothing to do with me. It’s just how I was raised. And I think that’s almost one of the only upsides of the shame that you feel — or I felt, I should say, as a young man — is, you do an awful lot to either minimize it, or just flat out refuse to accept that that’s the situation that you’re in. It’s really not for me to tell people how to live and how to deal with a disease, but I can’t relate to people who orientate themselves around their disease. The problem I have — and it’s caused me a lot of emotional difficulty over the years — is I would never be happy with relative success. Like, ‘Oh, hasn’t he done well considering he has CF?’ I’m really happy with the way that my life is going professionally, economically. Things have never been better. And it’s all down to that approach.

Lauren: And really, having drive and ambition beyond being chronically ill.

Tom: Absolutely. My own story is really sort of simple. 

The second I started to engage with my disease outside of doing the treatment and stuff like that, my world completely changed. 

I had very, very, very little to say for myself until about three years ago. And now I travel an awful lot. I have a really interesting life. Work outside of advocacy is really well paid; I’m really happy. It’s all come from just changing that; just throwing yourself into it, almost.

Lauren: It sounds like, releasing the mentality of being ill.

Tom: Totally. This podcast … as little as three-and-a-half years ago, would never, ever have happened. I would never have done this; I would never have spoken about the issues that I faced or the prognosis or the physical difficulties, and stuff like that. Ever. But now that I have, it’s completely opened my world up.

Lauren: Wow, that’s really cool. So you’ve sort of gone from not engaging, to engaging, and then engaging even more deeply because of the community?

Tom: Absolutely. I know that you spoke with Trishna Bharadia recently … she’s fantastic. I’m sure she will tell you the same thing. You can do far too much. It’s very easy to do that now. There is nothing like advocacy; it really has a huge pull. You can have an interesting life; you can work in amazing environments, fantastic educational establishments, see the world, meet people. I was not able to do that before any of this, and it becomes addictive. 

You never fail to feel better when you work on your chronic illness, rare disease, whatever … you’ll always meet people who know what it’s like. In my entire life, I’d never met anybody who knew what it was like.

Lauren: Until you started engaging. 

Tom: Exactly. I used to have such a naïve, uneducated, simplistic view of the world. I used to think that everybody who looked good and successful didn’t have difficulties in their lives. And it’s just not true. I’ve met some really financially successful people who are either parents or patients themselves. Attractive people. And it completely dissolves that. So it makes me happier in life outside of advocacy, because the comparison is more nuanced, almost. You can’t help but compare yourself, because that’s the world we live in. But …

I feel like I genuinely understand life far better now because of advocacy.

Lauren: That’s really wonderful. And I want to get more into your advocacy work in a minute. But before we do, you mentioned your dad giving advice. I wondered if along this road to self-acceptance, you found that you actually needed an advocate working on your behalf — whether you were bringing someone to appointments, or looking to someone to help guide you through this world. Was there ever anyone that you leaned on for that kind of support?

Tom: Well, the fact is, no. I credit my parents and the way that they raised me with everything. But also on the other side of that, they were there practically … when I couldn’t drive. My care center is about 90 minutes drive away from me. My dad’s a GP, and he drove me to all my appointments. And when I’ve been ill, he’s always come down, which is great. But actually, they still don’t know what it’s really like. Because the buck stops with you, doesn’t it? They’re fantastic at the practical considerations of my disease, but actually, emotional understanding of rare disease or the patient experience … I’ve done it all myself. I didn’t even know advocacy existed! That’s how far away from it I was.

Lauren: Tell us about your journey to it. How did you get involved in advocacy and connect with the community of chronic illness people out there?

Tom: I hope you’re sitting comfortably, because this may take a while!

Lauren: I am very comfortable, actually!

Tom: I didn’t know what to do with my life, and I was working for free at a web design company near to me. I don’t know why I did it, but I started following The CF Trust and other patient organizations like the European Patients’ Forum. We have an organization here in the UK called Genetic Alliance UK, and they posted that they were looking for people to help shape the tone of language that was used to discuss genomic medicine and human genomics. And I thought, ‘Yeah, okay, that sounds cool. I’ll give it a stab.’ And I just sat on the side of my bed and did the application form on my phone. I didn’t put the effort in that I should have done, really. And then — it’s never happened before, but every single day for about five or six days after that, I would think, ‘Oh that would have been useful to put on the application!’  And I was thinking, ‘Hey, maybe this means something.’ Because I’ve never felt like this before about anything. So I tried to find the link to apply, and I couldn’t find it. It took me ages. And it took me about 30 minutes to speak to the person that I wanted to speak to, because I couldn’t remember exactly where I’d seen it. So I spoke to a lovely colleague of mine called Mariana Campos. She works at The Francis Crick Institute now, but it turns out she was the person I needed to speak to. So, calling the wrong people two or three times actually got to the right organization — and then to her. I said, “This is a bit weird. My name is Tom. I’ve applied for this and I’ve thought of loads of things that I want to tell you about that I didn’t put on your application.” And she was, like, “Okay, well, off you go!” So I was kind of put on the spot, but I thought, ‘Okay’. “I’ve done this and that and the other … This is weird. Thanks for your time. Bye!” And then a couple of weeks later, I got an email confirmation that I was going to be invited to be involved with this project. And I can remember, I was driving home and I was just so excited about that! And I don’t know why. It’s really interesting work, but it’s relatively low level. It was something subconscious that happened, I think, basically. So I started working with Genetic Alliance. Then I found out about the European Patients’ Forum; they have summer training, like a patient leader training course, in Vienna every year, and it’s quite competitive. So I applied, and managed to get there. I spent a week in Vienna with MS patients, cancer patients. They were all under 30; it’s an 18-30 kind of thing.

Lauren: So you were engaging not just with people in the cystic fibrosis community?

Tom: Absolutely. It’s really not helpful to just stay in your lane, so to speak; it’s useless. You need to have a more global view. But when I was in Vienna, there was someone there who was really senior in France’s National Parkinson’s Association, I think. And we had a quick chat, pretty unsubstantial. Went home; had a fantastic time. Then about two or three months later, she sent me a message on Slack, which was the application process to the European Health Parliament in Brussels. I applied for that, got that — and it’s all just gone from there. And then I was invited back to Vienna the following year, almost as an alumni kind of thing, to kind of facilitate a bit but also to build on what I’d already learned. 

It’s amazing what I’ve done; I love it. The only thing is, I want to get paid to do it. That’s the issue!

Lauren: Well, that is the difficulty, isn’t it, with patient advocacy, too? Because a lot of it is volunteer work. You are also getting the opportunity to meet all these people in the chronic illness community, and I’m interested to hear how that’s deepened your understanding. Not only of chronic illness, but also of yourself and your own experience. How has that changed your view on it?

Tom: Whilst I would completely agree that I have had amazing experiences in amazing places many, many times over the past two-and-a-half years, three years … so have a lot of people who’ve been working and getting paid to be there. And it is essentially comes down to this: I don’t believe in tokenism. I don’t believe in balancing the boards. 

There is a fundamentally good commercial argument for patient involvement. It’s not about inclusion, it’s about money. Patient advocates are the best kept secret in the world. And it’s exploitative, and it’s not right [not to pay them for their insight]. 

Again, not in like, ‘it’s not fair.’ We add money to people’s pockets. 

Lauren: It’s actually fascinating you’re mentioning this, because Trishna touched on this when I interviewed her, and obviously she connected us. But the second part of our interview went live today, and the bit of the interview that I highlighted was her talking about patients being treated with the same respect and being compensated as fairly as medical professionals are. Because patient advocates are just as valuable, particularly to pharmaceutical companies and companies that are looking to find ways to actually save money. Trishna has led so many different companies — and I’m sure you have, too — through different processes that have actually saved them money in trial periods and all that kind of thing. So, developing those kinds of communication routes with various practitioners, pharmaceutical companies and patients, actually saves everyone time and money. But it’s people realizing that the role needs to be played by these patients advocates, doesn’t it?

Tom: I don’t understand how we are at, where we are at, with it. I’m working with a patient organization and we’re producing materials on how to meaningfully involve patients in clinical trial design. Basically, I will put a lot of time into it, which is fine, I guess.

Lauren: But you have to recognize your own boundaries, too. Because at the end of the day …

Tom: Let me say this before we go any further … 

I don’t think patients are more important than anybody else in the process. But the idea that we are less important is completely laughable. 

It’s just a complete joke. This company, they’re putting together resources on how to meaningfully involve patients in clinical trial design. And I got to a point where it’s, like … I’m doing too much, I’m not getting paid. I want to have a conversation about this with them. So I did that. And the person I spoke to reminded me that participation in the working group is voluntary. Well, it is for me and nobody else, because they are at work. I was the only patient in that working group. I’m still in it. And it’s just exploitative. It’s a complete joke.

Lauren: So how do you change that? Is it continuing to have these conversations with the people who hold the keys to the bank?

Tom: Yes. It’s also about providing better advocates, because that is something that I feel very, very strongly about — is bad advocacy. If you have an axe to grind, go and do it somewhere else. For example, I’ve worked with some senior people in Johnson & Johnson, and they’re not bad people at all — first and foremost. Let’s say it took six months to get a meeting with somebody who’s really senior, and then you go into that meeting and you complain or cry … it just isn’t the real world. It’s not how it works. 

If you can present either a scientific or commercial argument to these people, they will listen. If you expect them to care about you and your patient experience, forget it. Because they’re not going to.

Lauren: And bottom line, this is all about the patient’s experience. So the fact that they’re not even hearing about that from the people who are working with them to make everything better is, at best, ironic.

Tom: If you involve good patient advocates in the development of any good product or service, you will get a better good product or service out of it. And you will make more money. So what drives me mad is, I know that pharmaceutical consultants contact patient organizations very often to speak with them about something that they’re working on. So they take the patient’s knowledge and direct it straight into a pharmaceutical company at 1000, 2000 pounds per day? It’s a complete joke.

Lauren: It sounds like funds are really just, literally, being diverted.

Tom: Absolutely. 

Lauren: But that’s always been the case with pharmaceutical companies, too. Historically, at least here in the States, there’s such a monopoly on profit in the medical industry that’s really run by the pharmaceutical companies.

Tom: Yes. But I also think that if you can demonstrate that you can make them even more money, they’ll be interested in that. But yeah, I think it’s about having conversations with people who you think you deserve money from. Putting it to them in a professional, non-emotional way. Also educating advocates about the commercial argument for the work that they do. And then generally skilling them better.

Lauren: So you’re not only advocating for patients, but you’re also advocating for patient advocates.

Tom: That is exactly what it is. When I was working in the European Parliament one day, I was walking from one room to another. And there was a chap called Robert Mordkin … I think he was head of Citra. He said, “So who are you here for?” I said, “Well, you know, this is my disease community. Mental health is hugely important to me, as well. But actually, I’m here advocating advocacy.” I wasn’t there at all to serve my own interests. Ot the interests of my organizations. Just simply promoting meaningful patient involvement.

Lauren: It’s so important, as well. It sounds like you’re already coming up against difficulties with these companies that you’re working for as a consultant. But what’s happened with you within the medical system, as well? Have you found that you’ve come up against roadblocks within the NHS or with various healthcare professionals — or even individuals — where you’re forced to, first of all, justify that you even have an illness — because no one can see it from the outside?

Tom: Not necessarily roadblocks, just omissions. What’s scary is … I’m a patient, you’re a patient, and you and I both have experiences about advocating for what’s right or what should be done with patients. And also your own interests as a patient, your healthcare needs. I think that you have to be on it. I don’t think there’s any malicious intent. But for example, my CF unit … they have 450 patients or something. There’s a lot of people to keep track of. 

You have to ask questions. Never demand, but ask questions. Because the fact is, [doctors are] human beings, as well. 

They might have forgotten to give you a prescription, or to mention this trial, or whatever. You have to take an active role in it, to get the most out of it.

Lauren: Absolutely. Obviously, we’ve talked about the ways in which patient advocacy isn’t quite connecting the dots, right? But what about the ways in which the NHS … forgive me, NHS, because I think the NHS is wonderful. I think we all go through this … “The NHS is amazing. Universal health care is amazing. However … ” Why don’t we go through the ways in which it’s helping patients, and patients with chronic illness, like you and I. But also the ways in which it’s harming patients, as well?

Tom: I work for a research ethics committee. And the applications that we see are really varied. Super interesting job. I absolutely love it. But at the moment, all that’s mandated for patient involvement is … has the patient been involved in the design of this trial, or whatever … tick the box, yes. You have to justify what they’ve done. And nine times out of 10, we’ve shown them promotional materials, and they’ve said, “Yes, it’s all right.” And that’s it, you know?

Lauren: So really, what you’re getting at is that not every patient is really that involved.

Tom: Not every patient is that involved. They’re doing more. It’s only going to go up, thank God. But they’re not great at demanding meaningful involvement.

Lauren: Do you think that’s because of the lack of education that’s available directly through medical providers?

Tom: It could be that. I think it’s cultural, as well. We still live in a world where the doctors and physicians appear, and the patients are at their mercy. The notion, the idea that patients are sat on their beds in pajamas, waiting for something to happen, is still very much alive. It’s cultural. But also, there are just practical considerations. The NHS seems to be willing to have a conversation about it. Again, going back to what I was just ranting about …

The NHS is more cash-strapped than ever. And what better time to promote the benefits of patient involvement? It’s, like, ‘Oh, you’ve got less resources than ever, and you need them to go further?? I’ve got just the solution for you! Tom Smith, and he’s gonna help with this!’ The argument has never been stronger for it. And I think purely on an economic basis, they’re willing to have a conversation more and more.

Lauren: It’s interesting, too, because you mentioned that your dad’s a GP. Do you think, because you grew up in an environment where you had a casual and close relationship with someone in the medical system, that you are more comfortable confronting it, as well? That it’s easier to demand what you want, because you know doctors? Like, you don’t have White Coat Syndrome like some other people might have?

Tom: I think that there are lots of patient advocates who don’t have the privilege of a dad who’s a GP. Who are very demanding and very knowledgeable, skillful patients. But for me, I think it really helps to understand the reality of the caregiver/patient relationship. My dad is coming to the end of his working life; he’ll be retiring soon. And it’s a job like any other. There are a lot of people who genuinely care and want to make as big a difference as possible … cure the world, kind of thing. But it’s really helped me understand, actually. It’s almost like you can see behind the curtain. My dad — the favorite part of his job is his face time with patients. But also, he’s a regular guy, like a mechanic or teacher or whatever. And he’s got his own pressures. 

It’s simply impractical and unrealistic to deeply care about every single one of your patients. 

Sometimes, you just need to move them along, to the next stage in a diagnosis or treatment, or whatever. I think it’s helped me understand the reality of a physician’s life. But also, I only started to be more demanding as a patient when I got into advocacy. Advocacy has helped me emotionally. It cannot be overstated how much it’s helped me. But actually, I’ve learned to advocate for myself and my own interest at the same time. So it’s probably had a very, very positive impact on my health, as well.

Lauren: That makes a lot of sense. You also mentioned mental health and its importance. Can you talk to us a bit about your involvement in mental health advocacy, too?

Tom: Have you heard of Mind? 

Lauren: It sounds familiar.

Tom: Yeah, it’s Britain’s biggest mental health charity. And I’m a trustee there. I was never a service user of Mind — purely because I was not aware that it existed. But I needed it. I had my first lung transplant assessment when I was 17.

Lauren: Said so casually, too. This is a big deal, a lung transplant, by the way!

Tom: But to be perfectly honest, I look back at that stage of my life and I can’t believe it was me. It’s bizarre. I’m 31 now, so let’s call it 14 years ago when things really started to happen.

Lauren: Have you had a transplant?

Tom: I’ve had three failed assessments. I’m still alive because that’s how much I picked myself up out of the toilet, so to speak! 

Lauren: Yeah, you keep going!

Tom: Commitment and consistency has transformed my life. No doubt about it. When you have a lung transplant assessment — I’m not sure if it’s the same in the US — but in the UK, there is a mandatory psychological evaluation component of that. Like, survivor’s guilt … what’s your emotional resilience like … what’s your support network like, and stuff like that. So that was the first time I had any sort of psychotherapy, if you will. That was with a chap called Gary Latchford. He is a clinical psychologist who kind of specializes in CF. I still see him; I see him once a month. 

I really believe that this prevailing cultural wind of modern life is damaging in every conceivable way. And I think that we are not designed, from an evolutionary point of view … the pressures of the modern world are so new, we have absolutely no need or ability to cope with it forever without a problem. 

Everybody knows about the issue with Instagram. But the fact is, for example, not just with rare disease, but if you have a low paid job, and everything is telling you to look like ‘this’ …

Lauren: To spend money on this product, yeah …

Tom: Or to get into debt to pay for that, or to lease your Range Rover or whatever … that just traps you in the low paid job that you’re in. So you have to do that for 40 years without a problem? Not gonna happen. Even if you love your job, you’re still going to struggle with it if you do it for long enough.

Lauren: I’m just going to sum this up. What you’re saying …There’s no such thing as work/life balance, at this point. Because the way that we’re expected to live our lives doesn’t match income or opportunity.

Tom: Absolutely. 

The way that we are expected to live our lives is removed from reality.

Lauren: So how do you do it? You do it with mental health, with counseling?

Tom: Yes, I think the conversation has never been louder. And people are starting to understand how messed-up the world is when it comes to appearances and superficiality. But for me, I still see Gary once a month. It’s something that I really feel is ‘me time’. It’s a 90-minute drive for me. So I will drive. collectively, three hours — just to see him for one hour — because that’s how much I value it. And it’s nice to take an afternoon to do something for myself. And we have great conversations. What keeps me on the straight-and-narrow is … I’m almost like a shark. I can’t stop. That’s something I’ve come to realize about myself. I cannot allow myself to sit and do nothing. I think that doing nothing is always my enemy. And I guess with a lot of people, doing nothing is always going to cause you problems.

Lauren: You probably struggle with that, as well, when you’re doing your treatments every day, too?

Tom: Yes and no. The consistent physio buys me stability. And I’m also taking control of my situation by doing it. But actually, it’s chasing work opportunities. I work on weekends; I go to my favorite coffee place, send some emails, apply for things, write things. I’m probably quite lazy. But I can’t … I just start to sink.

Lauren: It doesn’t sound like you’re lazy!

Tom: Some of the busiest people in the world think of themselves as lazy, and that’s why they do so much. I work hard. And it helps that I love what I’m chasing, as well. And also, I do a lot of cardio and a lot of gym time.

Lauren: And you’re able to sustain that … you’ve worked up to a level of stamina where you’re able to do that with CF?

Tom: Yes. Again, it’s relatively new, as well; I’ve only been doing it for about two years. When I started taking my exercise and stuff seriously, I was not as fit as I am now; I had to build up to it. But the scary thing for me is, I think you lose your ability to get fit if you get so unfit and so unwell. Sometimes, if I travel or whatever, I can feel myself in a bit of a bad mood and I’m, like, ‘What’s going on?’ And then I’m, like, ‘Oh, I haven’t done cardio in four or five days now.’

Lauren: It’s also a tension release, too, isn’t it?

Tom: It’s definitely not an explicit thing that I’m aware of. But if I don’t do it, I become aware of it, if you know what I mean. So, exercise, working, psychotherapy … these are all things that I do.

Lauren: So, if there are people who are listening who are in the chronic illness world, or potentially entering it, do you have some tips for them? I like to do a Top Three. What top three tips would you offer people who are looking at a life in chronic illness?

Tom: I think if you’re new to it … I don’t know if it’s a tip, but I would certainly advise it … there is a huge world out there, of people in your situation or a similar enough situation for you to get support from. Even if your struggle is mental health …

Commitment and consistency will change your life. It’s changed mine. And even if it’s not a physical ailment, it will transform how you feel about yourself and your experiences with chronic illness or rare disease.

Lauren: So, community, commitment …

Tom: So yeah, the community of advocacy, where you get support — and it’s really nourishing. You just breathe it in. It’s great.

Lauren: And you say that with absolutely no irony! (laughs)

Tom: (laughs) Yeah! I was thinking that when I was saying it! And I think number three … just acknowledge and own your situation. 

The fact of the matter is, you really don’t have an awful lot of choice. It’s there. It’s coming. Just grasp it.

Lauren: Face the demon.

Tom: Take control. 

Lauren: And use that, I guess, as something to empower you to then really follow up with your care team and get the kind of care we’ve been talking about.

Tom: Absolutely.

Lauren: Obviously you’ve talked about how you’ve made lifestyle changes to not only manage your physical symptoms, but also your mental health. Do you find that you have any cheats or guilty pleasures or secret indulgences, or even if you’re having a flare-up … something that you turn to that’s a comfort activity? Three things that give you joy?

Tom: Well, the thing is, I think anyone who has CF and is listening to this will know that you often feel unwell. And if you don’t know with CF, the early onset of exacerbation symptoms are very similar for me to the common cold. I get kind of aches, a bit of a sore throat, a bit of a runny nose. It’s not really an indulgence, but part of the reason why I do so much exercise and physio is because I think: I’m not feeling great today. But when I did my cardio yesterday, I was fine. It’s almost like you have a yardstick to measure yourself with.

Lauren: You’re getting back into balance.

Tom: Absolutely. And it just helps you keep a check on things, keep an eye on things. Because often, a lung fitness test can feel arbitrary. I’ve felt great walking into an appointment and it’s been dire. So I think real world kind of stuff makes me feel better. But again, it’s difficult because my experience of CF is, I can’t indulge. I love food; I eat a lot of food. 

But as far as vices go, I can’t really afford to do it. I’ve got too much to do and too much to lose. 

I would love to get high every now and then, or drink a lot, or something. But I can’t do it, for obvious reasons.

Lauren: Well, you’d be sacrificing your well being.

Tom: Absolutely. I don’t really drink anymore, at all. But when I do, my state of mind is in the toilet for about a week afterwards. And that’s unpleasant. Or you can feel chesty or be hydrated or unwell. And for me, the benefits of partying and stuff really don’t outweigh the sense of comfort and peacefulness I get from working hard. 

Lauren: And taking care of yourself. Is there anything else that you want to add for everyone listening? Please tell them where they can find you and your work.

Tom: I am on LinkedIn. I don’t like it. My profile is laughably out of date. But if you’re interested in what I have to say, I’m on Twitter as @Pro_Patient. Parting words … 

Grab it, take control of the situation. Because the fact is, it might be the only thing that makes you feel better.

Lauren: Absolutely. I think that’s really good advice. Because I think there always is that push and pull — especially when you first get diagnosed. And you obviously went through it when you were younger … where you either don’t know what to do, or you don’t want to change the way you’re living your life. But actually, if you do make those changes slowly and incrementally, they can make you feel so much better. So, that’s really good advice. Well, Thomas, thank you so much for joining us today. It’s been an absolute pleasure to meet you. And I’m looking forward to everyone hearing more about your work. And we’ll link to your Twitter on the episode page, and to all the organizations that you’re working with that you mentioned, as well. So thank you so much.

Tom: Thanks for having me.

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