You Are Not Alone - Episode 3 (Transcript)
Shevonne Matheiken: The Psychiatric Trainees’ Committee of the Royal College of Psychiatrists is proud to present You Are Not Alone, a podcast series covering a range of topics on factors affecting the well being of healthcare professionals. There is a lot more talk about mental health and wellbeing since the pandemic began.
However, wellbeing is complex, dynamic and personal. It is not always something that can be solved with just resilience training or mindfulness. Both those things have its place, but concepts like intersectionality explained why there is so much more to consider regarding the wellbeing of healthcare professionals. This is what we hope to do through our conversations. Episode Three: Doctors with Physical Disability.
Rehana Kauser (RK): Hello, my name is Dr Rehana Kauser. I'm an ST5 training in general adult and old age psychiatry in the West Midlands. I have a genetic illness called Ehlers-Danlos Syndrome, which was recently diagnosed. And our guests today are Dr Jaco Nel, and Dr Kathleen Inglott. I will hand over to Dr Jaco Nel, to introduce himself.
Jaco Nel (JN): Hello, Rehana. And hello Kathleen. I'm an old age psychiatrist. I became disabled just over four years ago, after I developed sepsis. I was in hospital for six months. And in the process both my legs were amputated below the knee. My face was scarred significantly. And I also lost most of the fingers on my right hand and one of the fingers on my left hand. As you can imagine, this was quite a devastating and life changing event. But I'm grateful to be back in work and able to do a full time job.
RK: Thank you, Jaco. Over to you now, Kathleen.
Kathleen Inglott (KI): Hi. I'm a trainee, ST6 in forensic psychiatry. I am originally from a Mediterranean country called Malta and moved to the UK about 20 years ago. And I have been deaf – I’ve got severe to profound sensory neural hearing loss in both ears since birth.
RK: Thank you, Kathleen. Okay, so now we go on to my first question. Jaco, I'm going to ask you first, you've briefly touched on this already, but can you please tell me a little bit about your story.
JN: My story is quite an extraordinary and rare thing that happened. Not that sepsis is rare, but the way that I contracted sepsis. I started to feel ill at work one day, sort of late in the afternoon, with aches and pains and feeling really cold, and I thought I was getting the flu. I told my secretary that I was going to go home, and I'll probably see her tomorrow.
I got home and basically told my partner the same thing and went to bed. When I woke up the next morning I was still feeling unwell. But I didn't make much of it and still thought that it was only the flu. During the day, I became much worse, but didn't realise I was actually ill. And looking back I was probably developing a delirium by then. I remember hearing the telephone ring and picking it up but not being able to use my hands to answer the phone. And I can also remember that at some points I needed the bathroom but my legs wouldn't work. But nothing really triggered my mind that there was something wrong.
When Michael came home after work in the evening, he obviously realised that I was very ill and wanted to call the paramedics which resulted in a bit of an argument. I was definitely very confused and disorientated. And I didn't think there was anything wrong with me. And I think I thought he was overreacting. Luckily, he ignored me and called the paramedics who really quickly arrived and realised straightaway that you know that I was severely ill. They thought, initially, I had meningitis. I was taken to hospital straightaway. Well, actually, they did a bit of stabilisation first in the house with putting up an IV line and giving me oxygen and then took me to A&E, where I subsequently collapsed and was put in an induced coma in ICU on a ventilator. And that lasted for four or five days.
And after that I was in the high dependency unit for another two weeks or so. I obviously developed septic shock, which affected numerous of my organs. I had kidney dialysis for approximately two months, and luckily, that resolved itself. My spleen was permanently damaged, which obviously now causes problems with my immune system.
But the most devastating thing that happened to me was that both my legs had to be amputated because of the clots that cut off the blood supply. So they were amputated below the knee, and also loss of fingers on my right hand, which is my dominant hand. And my face was severely scarred, so I've lost probably half of my nose and my lips are quite contracted, and my mouth is smaller than it used to be. And that has an influence on how I speak, and also how I eat, for instance.
So that's how I suddenly within 24 hours, became a severely disabled doctor. And the next 2, 3, 4 years was spent on being rehabilitated, and getting back into work.
RK: That was absolutely an amazing story. Very hard for me to take in. And I'm sure it's hard for others listening to that. Jaco, what was it like coming to terms with your disability, when your life completely changed?
JN: Well, I'm still coming to terms with my disability, I think. In the initial stages, when I was in hospital, I didn't really think about becoming disabled. I suppose I was in denial for a bit, even though I could see my legs and my fingers turning black and hard, I still in the back of my mind probably thought, “Well, you know, the blood supply will come back and things will improve.” And that carried on for a long time. And strangely enough, none of the doctors really sat down and talked to me and said, “You know, you are actually going to lose these things. And, you know, you will have amputations.”
Eventually, I saw a wonderful plastic surgeon who eventually did all the work. And he came to see me one evening. And he was the one that sat down and said to me, “You know, things are going to be very, very different.” And he was very gentle in his way. And we talked about it. And I think that's when I realised that, you know, life was going to be totally different in future.
I was very determined to get back to work, work has always been a very important thing for me. And you know, if you study to become a doctor, and then train as a psychiatrist, it takes a heck of a long time, and if you enjoy your job, you really want to go back to it, don’t you.
So I think the first thing that I realised I needed to do was to far from getting stronger, was that I had to walk. I was not going to be in a wheelchair for the rest of my life. I just didn't think that this would suit me so I had to walk. The rehabilitation I had from the centre here in Manchester was absolutely fantastic. They quickly realised how determined I was to get better and that I wanted to walk and that encouraged them, I think, to really push me. Most of the people that I get are old people who often, I wouldn’t say are not interested in walking again, but they're not as driven. And maybe they just want to wear a prosthetic leg now and again, but for me, it was, you know, I had to walk and I had to do more. So that was a real positive drivenness in me that I actually quite enjoyed.
The other parts of the disability, such as the disfigurement of my face, is very different. And it's a very… more personal emotional thing to accept and to deal with when your appearance completely changes from how you used to know yourself. And for that, I had psychotherapy for a while, which I didn't think really helped. And I'm back now in psychotherapy with a different therapist and I think we are making a lot of progress. But it's still a difficult thing, when I look at myself in the mirror, or even when I'm on calls like these, where you can see your face on screen all the time.
So I suppose in summary, it was a hard few years, but also very rewarding in many ways. For instance, about 18 months after I began walking with my prosthetic legs, I went back to the centre to start training to run. I just needed to get fit again. I was really tired. I knew that and I knew I was very unfit because I wasn't getting any exercise. They had this wonderful treadmill, which you sort of zip yourself into a plastic, how can I put it, call it a plastic cube that fits over the running area and it gets pumped full of air. And that then changes your weight or your gravity. So it's called an anti-gravity treadmill. If you increase the amount of air, you weigh less, and there's less strain on your joints and muscles. So that's how I started to learn how to run again.
I must say by that time, I also got new prosthetic legs. I have blades at the moment, which I can use for walking and running. And during that time, they said to me, they are organising a triathlon for disabled people and would I like to take part? And I just said, “Yes, I'll do that.” I had no idea what it would entail.
But, you know, I trained, I went for swimming lessons which was really difficult and I didn't really like the swimming, I've never been a great swimmer. But I also went to a charity called Simply Cycling, where I started to ride a bike again.
So about eight weeks after this, we had a triathlon, with disabled people as well as able-bodied people. And it was such an amazing experience. The disabled people started first in the swimming pool, we had to do four lengths. And that was so hard. But my physio was with me in the pool all the time and encouraged me and obviously she had to hold me up a little bit because I was sinking. But I remember all the able-bodied people waiting to go in after us were just cheering all of us on and it was so great to feel that encouragement and that sense of achievement. So the day went wonderful[ly]. After the swimming, there was a bike ride and then there was also a distance that we had to run. By that time, I was so tired that I didn't run but I walked the distance. In the end, I got my medal which I am so proud of.
That whole sense of achieving just reinforced into me that there's so much that you can achieve even when you've developed such a life-changing disability. Like I said earlier on, getting back to work was probably the most important thing next on my list. I think we'll probably talk a little bit about that later on, how it was and what can be done to support people better when they have to return to work after a disability, or just supporting disabled people in general.
RK: That was really inspiring, Jaco. I just wonder, did you ever fear that you may not get the right support, and that this may end your career as a doctor?
JN: Oh, yes, there were times that I really couldn't see how I would get back into work. I think the walking was sorted. And I knew that, you know, I could get to work. I got an adapted vehicle so I could drive to work. One of the things that really troubled me was that I couldn't write anymore, because I lost all the fingers on my right hand. And, as you know, doctors then, luckily things are changing, made extensive handwritten notes and I didn't have a clue how I was going to do that.
And I suppose I also didn't know how I was going to find facing people again. I was worried about how colleagues would react to my altered appearance, and also how patients would react. I worried that I wouldn't possibly get the respect that I would be seen as a freak, as a monster. I thought that I wouldn't be able to stand up in front of a class at our educational meetings. So there were lots of things that I was worried about.
I think the one thing that I was thankful for was that I didn't train as a surgeon, because that would have definitely been the end of my career. So I'm lucky that I actually trained as a psychiatrist and I'm really lucky that my brain wasn't affected. But yes, it did cross my mind that I was going to struggle for the rest of my life, as I probably wouldn't be able to put in the hours. But as it turned out, things are pretty okay.
RK: That's wonderful, and you certainly inspire a lot of hope in me, because, although I've had my condition lifelong, it was recently diagnosed, and I'm going through a lot of the stages that you've already been through. So I hope that this will inspire lots of people who will be listening to this. Thank you so much. Now, Kathleen, yours being more of a hidden disability like mine, what are your reflections on how this affected your experiences with colleagues?
KI: So, as you said, unless I point it out or someone is particularly observant, I have quite light-wearing hearing aids now, they used to be much larger. It changed, I used to at the start, there are kind of plastic, colourful things that you can wear on your hearing aid to make them look nice, a bit like earrings. I used to wear those and I thought as I have to wear hearing aids, I might as well make them look nice.
But that got pointed out to me during a clinical encounter by a patient who immediately noticed that I might not be able to hear her normally because I had hearing aids and pointed that out. And I kept on wearing them for a bit but then I took them off. I suppose when you're meeting someone for the first time and trying to establish a relationship, I felt that it's about them, it's not about me, so drawing attention to my problems wouldn't be the best way to start off.
It’s also invisible in the sense that I don't know what I am missing. So unless someone points out that there's a high pitched sound that I haven't heard or someone's calling me from far away where I can't hear them, I would not know. So unfortunately, sometimes that might make me seem like I'm ignoring people. So sometimes I do, if that is pointed out, I do tell people, “Look, it's not that I'm ignoring you or that I don't want to talk to you, I just haven't heard you.” So there is that constant thing at the back of your mind wondering whether you've missed something, or whether there's something someone else would pick up that you haven't picked up. It gets better with time and practice. The more you see people, the more you are able to be straightforward with it.
But it still gets picked up in the sense that sometimes people expect us to say what we can't hear. And actually, if we can't hear it, we don't know that we can't hear it, so it does mean sometimes relying on others to help you out. And I've become quite used to it now. So I just say, “Look, I'm going to need some ears now. You're going to be my ears, help me out.” But the fact that it's invisible means that you have to reach out a bit more, I think and point it out and just be clear that this is it. I will tell you what I can't hear. And in the meantime, if there's something that you think I haven't heard, please let me know.
RK: Thank you so much. I can personally relate to so much of what you say. It was very difficult for me to get my diagnosis because Ehlers-Danlos syndrome isn't taught very well in medical school. It's a disorder that's been around 200 years but neglected by medicine. And I have physical features that show what diagnosis I have, and yet no one was able to pick it up. I had to get very specialist help.
And, you're right, when you have a hidden disability, you do have to reach out to people and keep reminding them, especially as I was born with a disorder that causes immense fatigue but, like you, I didn't know the difference. And also, because you can't really separate mind from body, I have a lot of drive and it comes across as energy. Yet, you know, it's something I've been able to cope with.
And eventually, I stopped coping because it wasn't managed, because I didn't know what I had. So I completely relate to what you're saying. And also about the physical side of it, you know, if you haven't got anything to basically show what is going on, you have to use your voice and that initially is very, very difficult. The next question is for both of you, were the necessary adaptations and adjustments implemented in a timely fashion? And also, did you feel that Occupational Health Services understood the nuances of your disabilities?
JN: First of all, occupational health didn't really offer any advice in terms of getting back into work. They were more thinking about having a phased return, and adjusted hours and things like that, but they couldn't tell me about any practical things that I would need to be able to do my work. And so I just had to do the research myself and try to figure out, you know, what will I need? How am I going to write up my notes? How am I going to type letters, type emails, and things like that. So to be fair, they really weren't of much help.
The HR department then arranged for a, I think they call it a workstation assessment. And for that they employed some company that came to the office and looked at what I might need. And they recommended things like a different kind of keyboard for my computer with bigger keys, which makes it, well, supposedly makes it easier to type. And there's a trackpad instead of a mouse, which actually works quite well, it's very similar to the trackpad you have on a laptop. They couldn't come up with any solution about how to make my notes. They suggested I dictate my notes and somebody else had to type them. All things that were really not very helpful, that was going to make life difficult, and would have taken me much longer to have a consultation and to write up my notes. So that wasn't very helpful.
At some point, somebody mentioned Access to Work, I think it was the HR department. Access to Work is part of the Department of Work and Pensions. They arrange similar things in terms of assessment. But they also pay for equipment, or they pay a part of the equipment that you might need, if your employer isn't able to pay for everything. It's a really good scheme. And I had a better assessment with them, although they still couldn't come up with all the necessary things that I needed.
So, my own research then led me to find a computer, or a laptop with a touch screen and a stylus, where you actually write on the screen with a stylus, which is much easier than trying to write on a piece of paper and that actually turns the writing or converts the writing into type. It sort of learns your handwriting so the more you use it, the better it becomes. That was really helpful. But I had to fight to get that. And when the IT department came to see me and I said to them, well, this is what I need. And this is the computer that I need. They actually went and bought one that it was the same make but it was a much smaller laptop, and the reason was because it was cheaper, but there were problems with that. And I just wasn't happy with it. I couldn't use it the way I wanted to use it.
And I remember one day after I got this, my manager and a person from HR came to see me in my office, because I'd said to them, “I'm not happy with this. They didn't buy me the right stuff.” And they actually basically forced me to demonstrate to them why it wasn't good enough. So they made me feel that I was being difficult and that I had to justify why I needed what I thought I needed. And I lost my temper there. Because I felt so ashamed that I had to do this in front of them but also so cross that they had the audacity to put me in that horrible situation where I already sort of felt like a burden and a drain on finances and things like that.
In the end, I did get what I wanted, but it took a very long time. And it was a difficult struggle. It wasn't all hunky dory, I can assure you that. I think a lot of people struggle with getting the right equipment or knowing where to go or getting people to understand what you need.
The other thing in the beginning, although I had my prosthetic legs, I used to go to work in my electric wheelchair because by then I hadn't had an adapted car. And I wasn't all that good on my legs. So we arranged for the doors from the reception area into the clinical area to open automatically, just to make it easier for me to go in and out. And very soon after that, there was some sort of security issue where a patient got through the double doors because they didn't close quick enough. And without consulting with me, suddenly the electric doors were removed. And I said, “Well, now, if I'm in my wheelchair, and I'm carrying files and whatever and my laptop, how am I supposed to get in?” And the answer was well just ask somebody, they'll help you. Again, that's, you know, that's not acceptable.
And the last thing that, even to this day isn't resolved, is that I still don't have a dedicated disabled parking bay. So it's not easy to get back into work with adaptations and adjustments, and certainly is something that I am trying to address at work as part of the disabled staff network.
RK: Thank you, Jaco, I can really relate to what you're saying, I still haven't got my adaptations and adjustments and like you, I feel like I'm a burden and mixture of feeling cross and guilty and ashamed and all of those mixed emotions. So thank you for that, that would have really helped me personally. Kathleen, what about you?
KI: Well, mixed feelings. So, I entered training after time out of training. I was a clinical fellow in a different trust. When I first went into training, I had to clear the whole Occupational Health checks. I wrote on my clearance form that I had hearing problems and wore hearing aids. And I heard nothing of it until the day before I was meant to start. I was told that Occupational Health hadn't cleared me and I would need to see a doctor. And oh, the appointment we don't have one, it’s gonna be in six weeks time. So you can't start.
And I remember walking up and down the corridor at induction. There was a research training going on. And then the research guy came and said, “You have to attend it.” And I said, “Well, technically, I'm not employed yet. So tough luck.” So I was on the phone. Luckily, at the time, there would have been a vacant post so there was a risk assessment.
Occupational Health also directed me to Access to Work. So Occupational Health weren't that familiar with what's needed and what’s not needed. And they asked me some strange questions as to did I think psychiatry was the best specialty for me, because people could sneak up behind me in the night which I thought wasn’t really reflective of what we do. But anyway, I suppose most of the things that I've got is by asking for them through Access to Work. And Access to Work tends to be very bureaucratic. So I've been through the system a bit and spoken to people, they will go through standard NHS Procurement, which means that they go for the cheapest option.
In my experience, they do have an obligation to make sure that you are provided with something that actually does the job. So if it doesn't do the job, then it's not an option at all. So cheaper or not, this is not an option there.
What has helped was groups online of people with hearing difficulties who have been through the system. And I have found some good stuff. When COVID started, everybody was wearing face mask and social distancing and the trust I was in as a trainee, they actually agreed to get me a dictation software until my hearing aid and the microphones I use with them were optimised and I appreciated that a lot.
And so mixed feelings really, I did feel on top of everything, same feelings as I didn't want to be causing trouble. I didn't want to be, you know, costing people money and so on. But then, on the other hand, if this is what I needed to do my job, I'm not asking for much because I am contributing to the work and, as much as I can, doing a good job. So it’s just similar to tools that I need, that other people need. Maybe they're not as standard as they should be, but they are available and they should be provided.
JN: What strikes me from all three of us is how we felt so negative about requesting adjustments, how it made us feel a burden, a drain on finances, how we felt ashamed and guilty. And to me, that's not right. And that's not how we should feel. After all, disabled people, most of the time want to work, and have been proven to be really good workers. So that's really something that needs to be addressed in a different forum, obviously, but something that is important that we shouldn't feel that way or made to be feeling that way.
RK: Thank you, Jaco, and I think, you know, you've put it very nicely but I think some of this does feed into our omnipotent self as doctors. We are better looking after other people than ourselves, whether that's some mental or physical disability. And also, this goes to show that even if you have a physical disability, there's always mental health aspects to it.
KI: Sometimes I think there is an expectation of perfection from doctors and doctors are expected to be perfect, in all ways, and we perhaps are quite visibly non-perfect. Or invisibly non-perfect. And that kind of lack of living up to the expectations gets internalised and I suppose that's why there's a big part of this shame, as you said, Jaco, attached to it and that there's a hurdle which you're not meeting, but it is a man-made hurdle, it is not your own hurdle. So I suppose that’s one way of looking at it, it’s comparing yourself to yourself, not to others.
RK: Thank you for that insight. Jaco, there is a lot more talk about flexible working since the pandemic, did this remove any barriers that were hard to break before the pandemic?
JN: Yeah, I think it did. Looking back at when I tried to get back to work. There was a period where I was physically still not really able to get back to work, but mentally I was. And I wanted to do something from home. I wasn't sure what, whether it would be clinical work, or audit or whatever, but I just thought I needed to get back into work to do something. And my request was just basically turned down and said, “Well, no, you can't work from home, what are you going to do from home, you can't see the patients from home, you can't have patients’ notes at home, I think you must just, you know, get better. And when you're better, you can start seeing patients, but there's no way you can do anything from home.”
And then COVID happened and now we are all working from home. So yes, that's probably one good thing about COVID is that it forced us to adopt different ways of working. And I think it's helped a lot of disabled people to function a lot better, you know, the fact that travel is difficult for some people, all sorts of reasons. I hope that this sort of working can carry on to a certain extent. I don't want to see patients remotely all the time. That's definitely not ideal, especially in psychiatry. But I also think that it's really possible to talk to patients either over the phone or over a video call. If it's somebody that you have already assessed previously, somebody that you know well, that you have already built a relationship with.
From my experience over the last 15 months, doing most of my work like that was that patients really appreciated the fact that we could still communicate. Doing new assessments was not ideal over the phone or over video consultations, giving patients difficult diagnoses like dementia is not ideal, but I think we can certainly combine remote working with face-to-face working and we probably wouldn't need to be in the office five days a week, like before.
RK: Thank you, Jaco. That was again very useful to listen to. Kathleen, how robust do you think our training systems are to support disabled trainees? Did people ever make assumptions about your competence? And what message would you have for those in senior positions in management, HEE, programme directors, or consultants supervising trainees and SAS doctors?
So, as part of my work, I'm part of the equality and diversity trainees committee in the North West. And some specialties are a bit more flexible than others. And I consider myself lucky to be in psychiatry where people are normally understanding. There have been some assumptions with my competence. Sometimes if I can't hear things, if there's a delay in responding and, that might be an internal feeling, but it has been picked up sometimes that people weren't sure whether I had actually heard something or not.
Again, I've had to explain myself, and this is my normal, and I suppose my message would be, number one, try and find out from the trainee, how they're feeling, and don’t assume that they know everything that's going on and as a trainer, there's some work going on with the trainer as well, to find out what the trainee needs. There’s quite a good explanation, which I learned through my training, which is part of the training, is finding out areas which are hidden, to yourself and to others. And that's part of the supervisor relationship. So I’d like them to bear that in mind and not expect the trainee to come up with everything and just be collaborative.
And also, I suppose the other message would be, which is a bit strange in disability podcast, but it's not just about the disability, there is a person there, there is a person with likes, with things they don't like, unrelated to their disability, with skills, with families. So try and find out a bit more about the trainee rather than seeing them as somebody who is gonna cause you a lot of trouble.
RK: Thank you, again, I can really again relate to all of these things. And the explaining part is always a problem. I took seven years out as a staff grade doctor, because I knew there was something wrong with my health. When I did on-calls, I became unwell. But I didn't have a name for this. Having a name for your condition, and then getting adequate support and help is vital.
In my case, I have a rare condition. And I actually argued with or challenged the clinical specialist who gave me the diagnosis. And he actually said, “Rehana, there's bias in getting your diagnosis because a lot of research isn't done into your ethnicity.” This has made me reflect a lot about other patients and colleagues who have hidden disabilities because of the way our system is. So lots of things to learn.
I have to add that as a trainee, I had amazing support from my peers and colleagues and the training programme directors as well, which encouraged me to come back and complete my training. However every day is a real battle, because I don't have a clear management plan either. And I have to learn a lot about my condition myself. Jaco, finally, what would you like your colleagues who do not have disabilities to know or do? How can they be a good ally?
JN: I think they shouldn't assume anything about me, and I'd like them to feel free to ask me about my disability. I am very happy to talk about it. I'm very happy to explain why things are difficult, why things take longer, why I do certain things in a certain way.
To be fair to my colleagues, they've been very supportive. Obviously, it's different when your disability is so visible, people are more inclined to ask about it and to talk about it. But I think the big thing is not to make assumptions. Not to, for instance, if I have to take some time off work, for whatever reason, to make the assumption that I'm lazy, that I can't do the job, that I'm not competent to do the job. Just to understand that would help a lot.
And I think it's more difficult for people with hidden disabilities, so people with mental health problems, which I also like to classify under disabilities. Those things, because of their nature, you don't carry them so that people can see them. I think that makes it really a lot more difficult for those people to get the support and the understanding from their colleagues.
RK: Thank you very much, Jaco. You summarised it beautifully at the end of this podcast. Thank you both for attending.
JN: Thank you.
KI: Thank you, everyone, for giving us a platform and for setting up this podcast.