How to make the most of your medical appointments

In conversation with Dr. Hannah Barham-Brown

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Natasha:
Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

As someone who grew up with undiagnosed EDS, I’ve spent pretty much my whole life interacting with different medical professionals. GP’s, physios, rheumatologists,ENT specialists, gastroenterologists, neurologists…You name it, I’ve probably met them. 

And every time I meet someone new, there’s a fear of the unknown. Will they listen to me, will they be able to help me? Will they try and make me take medication that already made me really ill? Will they be kind? Funny? Will they be a massive bloody arsehole? Who knows.

Each of us interacts differently with medical professionals. Apart from rare instances when I’m upset or angry, I tend to be quite stoic, to the point. Generally knowing what I need from an appointment, I’ve learned to explain my symptoms, how they’re impacting me, and discuss potential next steps. I’ve learned the hard way how to advocate for myself, how to ask questions and to evaluate the information I’m given.
And I’ve come to realise medical communication is a skill. And it’s one we’re simply not taught. 

That’s why I was really delighted to be able to speak to Hannah Barham-Brown, a chronically ill GP and disability activist. Hannah offers an amazing perspective because she has experiences on both sides of the doctor-patient relationship.
In this episode, we discuss the challenges facing doctors in our overstretched, underfunded system and how this impacts on patients. We also explore how doctors can create a space for patients to be open, honest and supported, and learn tools that we as patients can use to help us communicate with our medical professionals to ensure that we’re both getting the best out of the very limited time we have together. I learned a lot from our conversation, and I hope you do too.

I started by asking Hannah about her experiences of being a patient. 

Hannah: Yeah, it’s always a really challenging thing when you’re going to see a doctor and I completely get that it’s absolutely terrifying sometimes when you’re seeing a new doctor you don’t know.

I think everything I say has to be prefaced with, I don’t feel that the current health system is set up for people with chronic illnesses. I don’t feel that we have the infrastructure to appropriately manage people with chronic illnesses. I think we are, particularly at the moment when honestly the whole NHS is a bin fire, desperately just floundering around and all we can do is see the most acute thing at any given time and that long term care, the structure’s gone for it.

So in terms of my experiences, they’ve been many and varied, but I was originally diagnosed with EDS, Ehlers-Danlos Syndrome back in around 2016, 2017, when I was still at medical school. And so from the very first diagnosis it was a weird appointment because she knew I was a medical student at the hospital where she was seeing me. I’d literally come for my lectures because our medical school is in the hospital.

And so the kind of relationship I often have with my clinicians is a bit different to the standard person with chronic illness because they know I’m a doctor and I make it very clear I’m a doctor, and that’s something that those of us who are doctors who see doctors are very split on. So some of us will not tell anyone that we’re a medic.

I tend to go in and go, “Look, so here’s the thing, I am a GP. That doesn’t mean I’m an expert in this. So please just talk to me like you would anyone else and let me feel like I can ask the stupid questions that I feel I should probably remember from medical school finals.” So there’s already that slight imbalance there.

My first consultant was lovely but I think I adopted the right, I’m disabled, this is who I am now, let’s crack on with this attitude very, very early into getting my diagnosis because I’d been waiting for a long time and I’d grown up around disability. It wasn’t a scary thing to me in the same way as it would be to many other people, and I think she was quite taken aback by that.

The second or third appointment I saw her, I turned up in a wheelchair, I turned up on crutches and she was just like, “Whoa, whoa, whoa. Okay, this is fast.” And I was like, “Well, this is what I needed to get through the rest of my medical degree and I’m not going to sit there and wait for permission from a doctor or whoever to tell me I need a wheelchair because I know none of us are trained to do that.”

And I think that’s something we can potentially talk about later. That’s something I’m doing a lot of work on at the moment. So I think that’s always been a bit tricky.

I’m really, really lucky at the moment in that I have a fantastic GP who is the GP I want to grow up to be. She’s like 20 years ahead in her career. And I think we’re very similar personality types, which probably helps. But I met her right at the beginning of the pandemic and it’s now got to the stage where we have a good working relationship.

I don’t see her often. I maybe see her three or four times a year. I don’t really have any consultant follow up or anything like that, but we have the kind of relationship where I can go in and I can say, “Look, this is what I’m finding hard. This is what I think I might need. Can we discuss that?” And she’s there and we have that discussion.

And I go in, not to demand stuff, very much to say, “I’d like to discuss this.” And we’ve got that relationship where I will listen to her and I will a hundred percent go, “You know what? I need to put my medical care back in the hands of someone else. I need to not be my own doctor, which is really hard.” But also I feel like I can push back a bit and go, “I was hoping for this. What do you think?”

So I think that’s really important. In terms of neuro-divergency, I would add I’ve had some really terrible experiences. First, I’ve always suspected I had ADHD and never wanted to do anything about it. I only got my diagnosis two years ago when I was like 32, 33 having failed a lot of medical exams.

And I had, about a year prior to that, quite a sizeable breakdown. My life had gone to crap. I was really, really mentally unwell. And I had just moved to Yorkshire. I was very, very isolated. I went to what’s called Practitioner Health Program, which is meant to be a service for doctors, run by doctors, particularly for those struggling with mental health issues but other stuff as well.

I said to this guy who was a qualified GP, “I think I have some ADHD traits. I’m not looking for a diagnosis, but I think in the context of who I am and how I’m experiencing this, that’s important.” And he just looked at me and said, “Hannah, you’ve got four bachelor’s degrees. Don’t be ridiculous, there’s no way you have ADHD.”

And that meant that I didn’t think about it for another year. I just went, “Oh my God, I’m so stupid. I can’t have this then. That’s fine.” And then I started failing exams and then more and more traits came through, particularly in the pandemic, which heightened everything and the world was a horrendous place for those of us who are neuro-divergent.

All of that came out and it made it so much harder for me to go out and seek diagnosis and support because that one guy had told me I was being ridiculous, and the impact of that was huge. And even now, I’ll occasionally get colleagues going, “Seriously, but you’re super highly qualified. Really? Really you think that’s the problem?” And I’m just like, “I’m also incredibly good at masking and it’s exhausting.”

And so I think that’s been a real challenge is trying to explore the neurodivergent world, where I’m used to sitting there going, “Look, my body clearly does not work.” That’s very easy as a conversation compared to going, “My brain is a bit wonky, but you can’t see it. You just have to take my word for it.” That’s a conversation I’ve found far harder with medical professionals than the physical stuff, strangely enough.

Natasha: So one of the things that you were saying about those invisible experiences making it more difficult for doctors to recognise, understand, and in many ways believe you, is something that is so common for people living with these conditions that we tend to deem the invisible illnesses or the chronic illnesses.

And I think that’s something that I really want to unpack with you today in terms of, not just tools and techniques that patients can use in order to find ways to communicate with their medical professionals, but what types of things medical professionals need to do in order to create a space that feels inclusive enough and open enough for patients to be able to come and talk to them about these conditions. And I think a really nice place to start would be with the medical professionals.

I think for a long time I put so much of all of this on myself in terms of how can I better communicate, how can I think about what I’m saying, how I present. But actually I think it’s really important to talk about this first from the perspective of medical professionals because it is ultimately their responsibility to create an environment where we feel we can go in and talk about the things that are going on with us that are so challenging for us.

And one thing I’ll just say very quickly, I interviewed Dr. Gavin Francis, who’s also a GP, about his book that was all about convalescence and recovery. And we had a really fascinating conversation and something that he said to me was that he thinks a lot of times that patients have negative experiences with their clinicians is down to the fact that the clinician doesn’t know how to adapt to be the type of clinician that patient needs.

So some patients need a lot of emotional comfort and support and there there type of thing. Some people just see the doctor as a gatekeeper onto the next doctor or they just want the scientific information. I need a doctor with a specific type of sense of humor to get me, and I’m very to the point in my medical appointments.

Although, I have to say, I love my gynecologist, but once I cried because they hadn’t been able to help me. And she said to me, “I’m so surprised to see you crying. You’re so put together normally.” And I said to her, “I come to you because I was getting suicidal every month because of my periods, of course it affects me.”

So that in and of itself is my way of talking about things in a medical environment can be very beneficial, but then sometimes, because I’m not super emotional about it, that’s then taken a different way. It’s a messy and a complicated thing.

So that’s a very long way of saying: how can we start this conversation by talking about clinicians and the role of the clinician and what can clinicians do to help make the environment better for their patients?

Hannah: I completely agree with what Gavin was saying. If I just think with my GP hat on, on average we get seven minutes per patient. Once you take in all of the admin and stuff, we get seven minutes face-to-face time with each patient. And if you’re meeting someone for the first time, particularly someone with more complex health needs or a long health story, you can very easily spend five, six minutes of that just going through their medical history and not dealing with the issue that’s in front of you that day. And I think the key element of that is building those relationships.

So particularly at the moment, and this is why I say at the moment the NHS is not built for people with chronic illnesses at all, the infrastructure isn’t there, because at the moment trying to get consistent appointments with a GP that knows you is incredibly hard.

And so as a result, I often get patients who come in and often quite rightly assume that I haven’t been able to read their entire medical history. I will have had a glance to try and work out what is coming in. So any information you can give about the specific reason for that appointment beforehand, hugely important.

People think that the receptionists are just nosy women who run the desk. That’s completely not true. That information, that five word, here to discuss UTI, here to discuss whatever it might be, is absolute gold dust to me as a clinician. That’s what I want because then I can flick through your notes and go, “Right, I don’t need to think about that today. I don’t need to think about that today. I don’t need to think about that today. Let’s focus in on that history of UTI or whatever it was a year ago.”

So that’s really important, but it’s very hard to get those consistent appointments for the GP and it’s very hard to get enough time to do all of this. So often I really encourage people to come in with a list. And my more complicated patients, if they come in with a list like the size of my arm, that’s not uncommon. Even my technically not complicated patients do that quite often because it can be so hard to get appointments and I completely understand why.

I will often sit there and go, “Right, first things first, let’s go through this list. Let’s work out if there’s anything on there that’s ringing alarm bells in my head that I need to deal with acutely and let’s make a plan potentially to get you back.” Because I think that’s really important to try and build those relationships and bring back …

Obviously that’s very dependent on a system that allows you to do that, and at the moment a lot of the systems don’t allow us to do that. So I think from the perspective of what GPs can do, trying to build that relationship where we’re not constantly firefighting is really, really key, but it’s really, really hard.

I always try and come at things as a kind of partnership with my patients. I bring something to the table, which is 10 years of medical expertise and a lot of training and far too many exams, but I don’t live in that person’s body. I don’t have that person’s day-to-day experience. I don’t know if they’re struggling to go to the shops to get food, whether they’re also caring for five or six family members, whatever it might be. That is what the individual brings. That is what the patient brings.

And so I think we have to start, medicine is trying to do that more, seeing it as more of a partnership, a working relationship, than this doctor has access to this, doctor can send you to this, doctor can fix this, because actually a lot of the time I can’t fix things. That’s very hard.

People come to me and they expect me to be able to go, “Take this pill and your problems will go away. Go and see the specialist and your problems will go away.” And we are not good at having the conversations of going, “You know what? Yeah, you may be living in pain for the rest of your life. I can’t fix that. Nobody can fix that. How can we work together to ensure you still have a really good quality of life?”

And those are the discussions that take time and they take a good relationship because if you come in and you go, “I’m in pain and I need it fixing,” and my immediate response is, “Can’t sorry, that’s you forever. How can we make that better?” you’re not going to sit there going, “Oh my goodness, what a great GP. I’m so pleased with this appointment.”

You’re going to go, “Bloody hell. She’s got no idea what’s wrong with me. I’m going to go and see another one. I just want more drugs. I want X, Y, Z,” which is totally understandable if you’re living in pain and it’s affecting every single decision you make all day, but that’s not necessarily the best thing. But you need time to build the relationship where as a patient you trust me, and where as a doctor I can say to you, “Honestly, we need to think around this more.”

So I’m not sure whether I answered your question because it’s such a complex area and it’s so patient and physician specific and system specific. So it’s quite daunting to try and go, “I know how to fix this.”

Natasha: My childhood GP was infamous for being so late to every single appointment. You could wait over an hour for your appointment, but it was because he gave his patients the time that they needed. So there was a huge knock on effect, especially if you were going at the end of the day. You always wanted to be that first patient. Obviously this was in the NHS what, 20 years ago, 30 years ago. It’s very different.

But he was really famous for you got as much time as you needed, but that’s really not feasible now. And I still think back to that because I used to get very annoyed as a teenager having to sit in those horrible uncomfortable chairs for an hour and my mom always said, “Just don’t complain about it because if you need time he will give you that time. So if you have to wait because somebody else needed that time, you’re going to have to wait.”

And one thing I will say that I think makes a huge difference is communication though. So I went to see a new EDS doctor and her secretary called me while I was on the way to say that she was running late and I was getting updates. And she was late maybe an hour, an hour and a half. It was quite a long wait.

But I was getting updates at how long I would have to be waiting and just that recognition that I’m a person with other things in my life or that sitting in that time, I hadn’t factored that in, into my energy for the day. That was very difficult.

It made me feel I don’t get as annoyed and frustrated about waiting if I’m told that I’m going to have to wait as opposed to just this ongoing, where am I in the queue? Is there two people in front of me? Are there 10 people in front of me? That in and of itself can help me better plan things and my life.

And you can’t wait, if you have fatigue, if you have pain, sitting there for a long time not knowing how long you’re going to be sitting, especially in very uncomfortable chairs most of the time. It’s a very small communication piece, I think just from the perspective … I know that’s asking for more work so I don’t know how feasible that is, but just from a patient perspective of feeling recognised that you have other things in your life.

Hannah: I think that’s absolutely key because in GP land, we often get people come in who really need to be in a hospital, or need an ambulance calling there and then, or collapse in front of you, or come in for a routine blood test and collapse. All sorts of things happen.

I think people often think that we just sit in the room, see a nice patient, take the blood pressure, send them away. We often do deal with acute situations and particularly with the long waits at A&E. I’ve had people turn up having full on psychotic episodes. You need to deal with what’s in front of you and you can’t be thinking too much about what’s in the waiting room as well, otherwise we all just burn out.

And the worst thing in the world is when you’ve got patients four in the top of your screen because you’re just like, “That’s how late I’m running.” But it can take me over an hour to deal with somebody and I’ve got a 10 minute appointment. So that can really happen and that’s very hard to then explain. So I generally will pop through to reception and go, “Can you just let the people waiting for me know that I’m dealing with an emergency? I am going to be running late.”

Different surgeries handle it differently. So we have a duty doctor who, if crap really does hit the fan, I can go, “I’m really sorry. Are you possibly able to see one or two of mine because I’m dealing with this?” And we’ve got a very small but really good team who will go, “Yeah, of course, Hannah. Don’t worry. You do what you need to do.” But that’s not the case everywhere.

So I think having those communications with patients is really crucial. A loved one of mine ended up in A&E the other day with a query fractured pelvis. A&E was a bin fire, an absolute bin fire, even on a Monday night. And she was X-rayed and then left in a waiting room on a really uncomfortable plastic chair with no information.

And in the end she was in so, so much pain that she ended up self-discharging and she basically said, “Look, I cannot physically stay here. If there is no bed, I can’t sit and I can’t really stand. I need to just be horizontal. If there is no bed, can you at least tell me what the wait is? Can you tell me whether somebody can call me with the results of this? It’s been a problem for over a week. I’m not that worried about staying in.”

And just having that kind of thinking around the challenges and going, “Well, would it be better if I just call you later? Can this be a phone call rather than a face-to-face? Save you sitting in the waiting room getting cold.” All of these kind of things can be really helpful.

But it’s dealing with that every 10 minutes you’ve got something new and exciting coming in and you’ve got no idea what it is. It’s a really chaotic job when you think about it. Perfect for someone with ADHD, but it’s quite chaotic. And that’s what people don’t see when they’re sitting in the waiting room. They don’t see the chaos that’s going on behind reception.

Natasha: Of course. And one of the things you were talking about before is needing that time and consistency of coming back to see the same doctor, to build that doctor-patient relationship.

One of the things I think about a lot is how people from different cultures and different backgrounds communicate with their medical professionals. So for example, I grew up in a family that was extremely open about talking about health. There wasn’t really any shame attached to that. I feel very comfortable going into the doctor and just being like, “This is my deal.” Probably helpful given that I write about health on the internet, probably why I write about health on the internet.

I have friends who said that they barely even can talk about it in their own family because it is considered shameful for them to talk about their ill health. So when people ask me for advice on this, I’m like, “I don’t know.” It’s very easy for me to just say, “Go and tell them.” It’s not that easy. So how can medical professionals create that space for people who might not feel comfortable or able to come in and actually tell you what is going on?

Hannah: So this is really tricky and I think one of the key issues we have, and it’s possibly slightly separate, is that a lot of people don’t understand how general practice works and what general practitioners do. Particularly patients that are potentially coming from services abroad, they have very, very different medical systems.

And that’s something I see a lot is that people come in and they’re like, “I need you to send me to a cardiologist and I need this medication that is not made in the UK. And my cardiologist in this country says you need to do this.”And I’m just like, “Whoa, whoa, whoa, whoa. I really like my GMC number and if I don’t do this properly, I could lose it. So as much as you might be telling me somebody in a different country has said this, I can’t just go off that, particularly when there’s no letters and it’s literally my X says.”

So I’m just like, “Okay, we need to do things according to the system. We need to get you in front of the right person. There’s only so much I can do within the National Health Service at a time.” And trying to explain that and explain those cultural differences and how it works over here is really difficult sometimes.

But I think when it comes to people feeling potentially uncomfortable about coming in, giving us a heads up of what it is. That comes back to using the reception when they ask, can I ask a bit about what’s going on? Using that can be a really nice gentle way of breaking in.

Even if you just say something like it’s to do with my bladder, or if you say, “Oh, it’s a women’s health issue,” that’s great. That has narrowed down the entire encyclopedia of medicine down to one area for me and that’s…or two.And that’s making it a lot easier for me to know why you’re coming in and have a think about it and think about how I’m going to communicate with you about that. Because I will talk very differently to somebody who’s popped in with an ear infection potentially to somebody who’s got a 30 year history of a really complex medical disability. Those consultations are going to be very different and it’s very difficult for me to gauge exactly who’s in front of me at the time.

Bringing people I think is really helpful. Now we can do that again post COVID. Think about who you’re bringing though, because sometimes you can bring somebody who will just talk over you and that can be the most challenging thing for a doctor-patient relationship sometimes is when you’ve brought in very well-meaning auntie who thinks she knows what’s going on with your body better than anyone, she knows what you need and she just wants to get it for you.

Totally understand why, but if I’m asking a question of a patient, there’s a reason for that. My cat’s just broken in, he should be willing to be well-behaved. So thinking about who you’re bringing in and talking to them about what you want to say and what you want to get out of the appointment first is really important.

And lists, I love a list. I love it when a patient comes in with a list. It is a bit of a heart sink moment sometimes because you sit there going, “Oh god, how are we going to get through all of this?” But it allows us to structure the appointment together and to work through the expectations and priorities we both have.

So simple things like that can really help because it gives me an idea of some flash points. There are things that a lot of people feel awkward talking about and I can be prepared for that if I know it’s coming and think about how we have those conversations.

And if for example a doctor wants to do an internal exam and you are a bit kind of like, “Oh,” it’s completely reasonable to say, “Can I come back and have that done another day? Is that okay?” We might say, “Hand on heart, you’re going to be waiting a few weeks then. And that might be a decision you have to make because we can’t necessarily just fit you in after a few days when you’ve had time to get your head around it. That’s not something we can easily do.”

But I think being able to sit there and go, “Can I come back for this? Can we reschedule that? Can I have some time to think about my options?” absolutely fine. The worst thing I can do, the worst medicine I can give is one that a patient won’t take. The worst intervention I can make is one that a patient won’t agree with and won’t take part in because that’s wasting your time and mine, and we don’t have that kind of time at the moment.

So I’d far rather say, “Let’s have a think. Come back and see me in a couple of weeks and we’ll go from there. We don’t have to get everything done in one appointment.” And having those conversations and giving people time to digest and think and discuss with their family whatever it might be is really, really helpful. Again though, that’s where the infrastructure can often let us down.

Natasha: You talked about lists. I love a good list. I am a list person. Mind maps make no sense to me. I’m a list person through and through. When it comes to thinking about preparing a list or … Let’s create a little scenario because that might be helpful.

Say you’re a person who has started experiencing something like symptoms of long COVID, for example, and you’ve been very poorly, very scared and you don’t really understand what is going on with your body. We know how common it is for patients with symptoms to do with things like fatigue, like brain fog, like pain, how often they get dismissed by their medical professionals. And we’ve had this conversation about how much of this is on the system, how much of this is on medical professionals to create that environment where patients feel like they’re able to come in.

I am interested in whether there is anything that patients can do in terms of how they maybe think about presenting their conditions? If you’ve got a very short space of time and you’re obviously very scared and you’re very upset and you’re very emotional for understandable reasons, but you only have seven minutes, it’s very easy to not get to anything of the substance of what is going on in that time. And so planning and preparation can be really, really beneficial to helping you make the most of that appointment.

So how can somebody as a patient start thinking about the preparation that they could do to be as effective as possible in getting the information they need to their medical professionals?

Hannah: It’s such a good question and I think it’s so important and it’s something we don’t discuss enough, how to best use your GP appointment and how to best use the NHS more widely and it changes all the time so it makes perfect sense that people don’t always get it right, whatever right is.

As GPs, when we learn to consult, we often use what’s called the golden minute and that is getting somebody in. And some GPs are taught literally to just sit there in silence and wait for the patient to just spill. I hate that. I can’t do it. It makes me feel really awkward. Maybe it’s my neurodivergent brain.

I’m always like, “So, what’s been going on?” Others are like, “Hey, how are you?” But that’s a really open one and I always try and think about the fact that the patient would’ve been sitting in the waiting room or planning for this appointment for weeks and they will have a very clear kind of blah, I need to get all of this out.

And the first question I ask, if it throws them, then that can take a while to get back to the point, so I tend to go with a what’s been going on because it’s really open. If you ask someone how they are, they generally go, “Oh, I’m fine. Thanks, Doc. How are you?” And next thing you know you’re like, “This is not about me. Crack on. Why are you here?”

So thinking about what you want to say and how you want to use that golden minute is really key. So we obviously love a list. One great thing I saw recently was where somebody had come in with a few different issues, and I do this. I recently went and saw my doctor saying, “I’ve got a breast lump, I’ve got an infected finger and I need a fit note or I need a prescription for X please.” And they were just like, “Fine. Boom, boom, boom. Not a problem.”

What this person had done, had gone, “I’ve got a few issues.” Now some surgeries have a very strict one problem per consultation rule, which can really throw you. So go in instead with a list of symptoms rather than a list of this is what I need fixing. And I think with people with chronic health conditions, we know enough of the system that we know potentially what’s wrong with us, but there are a few things. That’s going to be a challenge and think about how you want to prioritise those things.We’re both just going to have to accept we can’t do everything in seven minutes. So how do you want to prioritise those things? What’s most important to you? Put them in order, but also have a symptoms list. If you’re sitting there going, “I have no idea what’s going on but my body hates me,” then if it’s something like long COVID, which is a great example, you can sit there going, “Brain fog, fatigue, shortness of breath, shortness of breath on exertion when I’m going up and downstairs.” What specifically are you struggling with?

Often people if they come in with a list of symptoms like that, I can go, “Boom, got a very good idea of what’s going on.” If I’m having to tease it out and go, “And how are you managing on stairs? And how are you doing X?” That takes more time as well and my brain’s having to process whilst we go, which it’s doing anyway, but having it all in front of me, I find really helpful.

So thinking about a list of symptoms is great. It’s a bit like writing a press release. You can tell that I’ve not been a doctor forever, I’ve done other stuff. When you write a press release, you write your headline and the key thing that you want the journalist reading this to pick up on.

And it might be we’re having a bake sale to raise funds for the Ukraine. Great. Those are the first two lines, so bake sale in village and then it’s like fundraising bake sale is happening for the Ukraine on this date. And then you have all the bumph, you have quotes from lovely people, you have all of that stuff.

That’s how I would structure my GP appointment if I was going in to see my doctor, here’s the major issue, here’s how long it’s been going on, here’s how it’s affecting me, ideally, here’s what I am hoping you can do about it. If you can go in with those things clearly distilled in your head. If you don’t know the answer that’s fine, tell us.

So we’re trained to ask people’s ideas, concerns and expectations, how it’s affecting people’s daily life, so their biopsycho social element, and what they’re hoping for. And if you can do all of that, we’ve got a great appointment on our hands.

It’s not always possible obviously and that might be over a few appointments, but being able to really structure what you want to get out of that appointment and what’s really worrying you and distilling that down makes our lives a lot better. And that’s where that kind of partnership working comes in.

It can be really frustrating as a clinician when somebody walks in and goes, “Oh. My life is crap, just fix it.” And you get that a lot and it’s like, “Okay, now let’s take away the assumption that I can work miracles and let’s think about the individual things we can work through, then we’ve got a partnership.”

But that takes work on both people’s parts and that takes buy-in from both people and I think that’s what we often need to work on. And I appreciate that I’m going to get some very cheesed off people listening to this going, “No, I need my GP to fix things.” That’s not necessarily what we’re here for unfortunately.

Natasha: I think that’s a really important point. And I remember the first time a doctor said to me, I’m putting you on painkillers. I’ve come off of all of my opioids over the last few years, but I remember him saying to me at the time, you are not going to be pain free on this. And the expectation shift and the recognition of that I think is as you said, we are not taught that, you do expect. And I think this was something that a lot of people learn the hard way. And I’d spoken to people who got long COVID who’d only had very minimal experience with the medical profession before that and very easy experiences before that. They had an ear infection, they got eardrops, they were better, that was their experience. So when it becomes something more complex, I think as people we generally believe that you go to the doctor, they make you better.

And so there is that expectation shift of if you believe that you should be able to take a pill and your pain will go away, if you’re not getting that and you don’t realise that that is unlikely, it completely changes the relationship that you will also have with your medical professionals and your own health because you’re always going to be disappointed and frustrated.

Whereas, I think what you’ve said several times, it seems like it’s a conversation around expectation setting. In my personal experience, I can only talk about my own personal experience, it’s actually quite rare. There seem to have quite often not been expectation setting involved in those wider conversations about this is what is reasonable, this is what you can potentially expect, here are some ways we can work around some of the challenges of these things. And I think it is a wider cultural thing of we still expect you go to the doctor, they make you better.

Hannah: Exactly. And that’s what doctors expect as well. We are trained, and I think it’s very wrong actually. I think there’s a lot that needs to change in terms of medical education, but we still have this slight superhero complex and the very ways we’re taught of we’re going to grill this medical student on a ward round in front of a patient and if they don’t know the 27 different causes of jaundice, then they’re clearly an idiot, that kind of grilling of people that they need to know the answers, they need to have the solution.

And then they get into the real world as a doctor and you’re like, “Actually, we often don’t have that.” And it’s awful for us to have to say to people, we can’t fix you. And I hate doing it, I hate having to say, “I’m really sorry you’re probably going to be living with this forever,” because I came into this to help people.

And you have to do a bit of a rejig in your brain going, “Helping people doesn’t always mean fixing them. Helping people can be a matter of setting those expectations and then thinking how we can make that life manageable.”

As a patient who has chronic pain type issues because my body likes to just dislocate, people often get a bit baffled as to why I’m not just constantly taking painkillers. And so that is a decision I’ve made.

I’ve made a decision to use more mobility aids to spend more time in a wheelchair from an earlier stage of my illness because I don’t want to live the rest of my life on Naproxen and NSAIDs and drill a hole in my esophagus and all of the side effects and issues that come with that.

I am aware I’m going to be in pain. I’m not okay with it. Of course, I’m not okay with it, it bloody hurts, but I’m resigned to that. I’ve accepted that and I’m going to try and plan my life around that. And if that means that some days I’m going to have to call in and say, “You know what? I’m doing it from bed today,” then that’s what I’m going to have to do. And if that means that I can’t have a full-time medical career and I freelance otherwise, that’s what I have to do.

And so I think once I know that, once I have those expectations, and this is where the privilege of being a medic with disabilities comes in because I knew what the long term impact potentially could be, I could make life decisions and crack on.

But I think unless doctors are bold enough to have those conversations and go, “You know what? We can’t fix this, but what can we do to make things better?” Then patients aren’t going to necessarily have that expectation set either. So I think that kind of honest, open communication is really key and it’s something that we’re really scared of doing a lot of the time.

Natasha: One of the things that I think about a lot with this is yes, expectation setting, yes, we need to talk about the impacts of these conditions and how we can help, but a lot of the times there aren’t actually resources out there that are available for people to help them.

One of the most important things is just time, just having somebody to talk to, having somebody to recognise that. But I think also what you said about, I can’t help you, but I want to help you in a different way. I think that’s so important and I really do find that if I go to a doctor and they say, “I don’t know. I don’t know what we could do to help you, but I am here for you and I want to help you figure that out,” is so, so important.

But I also think one of the challenges is, what then can they do? Because if you can’t get access to psychological support, if you can’t get access to physiotherapy, if you can’t get access to whatever things you need to do day to day.

I’ve been very open about saying I spend a lot of money on managing my health and I self-fund that because I need to have it regularly and long term. Most people do not have that kind of ability to do that. And so I know that my health would be a lot, lot worse if I wasn’t fortunate enough to be able to self-fund my care.

These conditions can impact relationships, your ability to work, your ability to have hobbies, your ability to engage in the things that are important to you. And talking to people like you and talking to clinicians that work in this space a lot, I feel very heartened by their willingness and openness to have those conversations but that is not the norm for most people, especially when those resources just are not there.

So when it comes to A, having those conversations and having the time to have those conversations about the wider impact that your health has on your life and then saying, “Okay, I want to be able to help you manage this because I can’t make your pain go away, what can we do?” What can you do when there aren’t really resources easily accessible to people?

Hannah: So I see my job as being part detective, which is great because that’s what I always wanted to be when I was growing up anyway. So I’m part detective in that people come in with a whole range of different symptoms and results and tests and stuff and I go, “Ta-da! Here’s your diagnosis.” Hopefully. But also I think the social prescribing, community building, personal holistic element of my job is the bit that probably really excites me and gets me out of bed in the morning and that’s the stuff I love.

And I think when many of us go into general practice, it’s because we love that, we love that getting to know a patient and their family. Often I will see an entire family over the course of a couple of months. I will meet every single part. And so I can put things together and I can go X does this job, his wife does this job, their kids are doing this, and that gives me this amazing kind of insight into who they are, what their priorities may be, how they live. So a lot of that doesn’t necessarily even need to be said sometimes. And that’s what I love about general practice. That’s what gets me excited about it and that is what’s been taken away for many of us.

And when I think about whether I’m going to leave medicine altogether, which a lot of us are considering at the moment because it’s a bin fire, that would be the main reason why because I don’t get to do the job I love, which is that community building, wholesome stuff.

I’m trying to get a community garden set up in the practice. I’m doing a library thing in the waiting room where people can just come and pick and take a book. We have now social prescribers which we can send people on to, who’ve got networks of all the different organisations. And that might be an exercise organisation, it might be a mental health group, it might be a financial service that can help advise you regarding that, food banks, all of this sort of stuff.

So I can send you to something. And in Leeds it’s called Linking Leeds and they’ve got more time to sit down with you for half an hour and go, “Right. What are the real problems you’re facing? What are you struggling with day to day in terms of your life and how can we help with that? Whether it’s because of illness or whatever, how can we help you?”

But that’s traditionally the role the GP always took was that we knew all the different services and we could direct and we had the time to have those conversations. That’s getting taken away from us now. We’re getting more and more specialised. And whilst some people might love that, I don’t personally and I find it really frustrating.

I try and find ways around a lot of the time. So I’m using more and more resources, things like YouTube videos, clips, I’ll recommend radio stuff. I will have often lists of all the different mental health resources and just highlight things I think might be useful to any given patient.

And I prescribe books a lot to the extent I’ve now got a list that I’m taking to my local library saying, “Can you please stock all of these” because I want to recommend them to patients and I work in a very socioeconomically deprived area where they can’t afford to just pop into Waterstones and buy them necessarily.

So things like that, just knowing the networks around you can be really helpful, but it is incredibly frustrating that I don’t get the time necessarily to do that with every patient. My specialist interest is in sexual wellbeing and gender and relationships and I find that fascinating, but you have to get to know somebody before you can sit there going, “So tell me about your sex life.” You can’t just open with that. They get very weirded out by it.

But I think those are the kind of conversations that really matter. And it’s something I feel particularly strongly about because as a member of the LGBTQ community, I’m aware that the conversations we have, the relationships we have with physicians are often very challenging. And many of us have had bad experiences on that front and that means that we don’t access healthcare when we need it.

Lesbians are more likely to go to A&E than they are to their GP. They will choose A&E instead. And I think we need to ask questions about why that is. And a lot of it is because those relationships and the assumptions that are made, because we’re working very quickly and as a result you don’t feel seen, you don’t feel safe.

So it’s all those little things and I’m constantly thinking about what little things can I do to show that I’m a safe person. So my room is covered in rainbows. I’m trying to get pronoun badges for every member of staff on their name badges with their pronouns and stuff, and can I do a display in the reception to put rainbows everywhere and show people that this is a safe space.

Those things hopefully give messages that I don’t necessarily have the time to articulate and give people that sense that I am safe and I am happy to have those conversations. So yeah, come into my clinic room, it’s full of rainbows and there are books like The Vagina Bible on the shelf because I want people to know that they can raise that stuff.

But we’re constantly thinking in the back of our heads, how can we help facilitate those conversations with visual clues and that sort of stuff? But it’s really tricky at the moment.

Natasha: As you mentioned, so many people have had negative experiences with GPs, with doctors. And one of the things that I think about a lot is that a lot of the times I don’t think doctors know because if you’ve had a negative experience you often just don’t go back, and so the doctor might have thought that they have helped you because they haven’t seen you again.

And so there’s this disconnect between we often say, “Oh, that was a bad doctor, that was a crap doctor, that was a cruel doctor,” and I very much doubt that the majority of these doctors go in thinking that they’re going to hurt their patients, they’re going to make them extremely upset, that they’re going to invalidate them, that they’re going to do all of these types of things. That’s not why people become doctors.

So it’s such a disconnect between the patient experience and the medic experience in some of that. And I feel like the feedback loop isn’t great because as I just said, you have a bad experience with the doctor, you’re just not going to go and see them again. And then you have to deal with the repercussions of having dealt with a bad doctor and how that changes how you engage with medical care for years to come and the way that you view your own health and all of those things and your access and ability to access care.

What do you do? And I don’t want to say bad doctor. I’ve got scare quotes going on. I don’t want to say bad doctor, but it does feel like when you’ve had a negative experience with a doctor, what rights do you have as a patient?

I’d like to talk about a few things I suppose. I suppose I’d like to talk about self-advocacy. I’d like to talk about what can you do if you do have these negative experiences and how can we get medics to then learn from them, because it’s a loop, isn’t it?

Hannah: So it’s a really challenging area and I feel this. One of the things I hate most about my career and being disabled simultaneously is that I’m obviously part of the medic community and I’m also part of the chronic illness community and the disability community. And I spend a lot of time seeing them yelling at each other and feeling very stuck in the middle and I hate it.

And when people are on Twitter yelling at me about how crap their GP is, it’s really hard not to take that personally. And also I sit there going, “I completely …” I know how awful it is when you have a bad appointment, but at the same time I don’t think people necessarily understand the pressures we’re under and how we work.

And it’s really hard not to get defensive about that and I’m trying really hard not to be defensive about that, but this is why a lot of us are burning out and leaving the profession and we don’t have enough doctors fundamentally.

So when it comes to having had a bad experience, first things first, we all know that we’re human and fallible and if you can go back with somebody with you and say, “Look, I don’t feel like our last appointment went particularly well. I don’t feel like I got what I was hoping for. I was hoping to have a discussion about how we can move forward.” Honestly, I would far, far rather that than you think I’m a terrible doctor for the rest of my life.

And it’s an awkward conversation, it’s a challenging conversation to have. But if you can definitely take someone with you and say, “Look, I’m not getting what I feel I need here. Can we talk about what I can expect, what I can hope for, how we can move forward because like it or not, this problem isn’t going away?” that’s really helpful.

And not often, but sometimes I can sit there after an appointment going, “I’m still not sure why they were here.” And often it’s just that we haven’t communicated our joint expectations for either of us as doctor or patient. So refreshing and going, “Look, that didn’t work, let’s try this again,” can be great. And those can be the best working relationships going forward because we get to know each other and we’re not relying on that first seven minute interaction.

If it’s a GP, then you can write to the practice manager if you’re really upset about the way you’ve been spoken to or you’re really upset about the processes, you can write to the practice manager.

And that’s often really key because always trying to come at this from a people are human, people are just trying to do their best in a shitty system, then the practice manager can often take the time to write a letter back or give you a call or have a meeting to say, “Look, this is what’s happened. I’ve spoken to this doctor, this is what’s going on, this is what we can try and sort.” They can apologise if necessary, but they can also try and explain why you might not have got what you wanted out the system.

A lot of the time we’re sitting there as GPs going, “I really want to get you to see this surgeon and the fact that I can’t get you into the hospital is not something I have any power over.” But just explaining that, because I think that’s the sort of thing that often gets lost and it comes back on us.

But practice managers are great because they’re often not clinicians, mostly not clinicians, and they do understand the challenges that patients have and the systems we’re working in. So they’re a really, really good go-between.

If it’s hospital, then talking to PALS, the Patient Advice and Liaison Service. They can often advocate on your behalf as well. And if you’re having problems, then they can raise them and they can sit there and they can process it. They are your voice in the hospital certainly. So using those resources are really key.

I’d urge people not to leap on Google and leave crap reviews at surgeries. I appreciate it’s very cathartic. We’ve all done that on TripAdvisor, but that’s not necessarily the way to improve things. If there are things about particularly your GP surgery that you’re sitting there going, “Oh my goodness, I really wish they had X,” every GP surgery has to have a patient participation group and those are fantastic.

I’ve worked with patient groups, I love patient groups. I worked on the BMA one for many years and it’s great because you get this range of voices, you get a range of different experiences, genders, ages, conditions. Often patients come in going, “You know what would be really helpful? It’s just having a reception desk that isn’t so high up I can’t see it from my wheelchair.”

And it’s not that we haven’t put that in because we hate wheelchair users, it’s because it hasn’t been thought about. That generally is a very rare occurrence in the surgery where I work because I work in a wheelchair, so most of the time we’re pretty hot on wheelchairs.

But somebody just coming in and going, “Actually, could you try this because it would really help?” and offering us solutions, gold dust, love it, bring it on because we’re not going to know how to make everything perfect for everyone. And getting involved, it comes back to that partnership working.

Working with your local general practitioner in the community has to be a partnership. And I want any surgery I work in to be a community hub. I want it to be somewhere that people feel safe and welcomed and listened to. That takes work on both sides. So crack on, bring it on. Have a look at your patient participation group.

Natasha: If you think about something like chronic fatigue for example, a lot of GPs are still recommending people exercise. And so even if you haven’t got access to the online groups or you just don’t know to be part of the online groups where you can print off the research off the internet and show it to the doctors and you’re in a situation where that initial communication just has completely fallen through, how do you advocate for yourself? What can you do in situations like that?

And I’ll say, definitely in the past, I have just not gone back. I had, for example, physiotherapy where I didn’t feel like I was getting better. I think it was just at the wrong level for me with what I was doing. And I remember I had one exercise and she said, “Do this exercise.” I said, “If I do this, I’m going to dislocate my knee.”

She made me feel like I was being lazy for not wanting to do that exercise. And I did that exercise in physio and that afternoon or that evening, I dislocated my knee. And I remember going back and being like, “I told you. This is your fault,” and being so angry. And I think I just stopped going very soon after that.

And then my EDS got so much worse for years because I believe that my body was just getting worse and worse and worse and worse and physiotherapy, quote-unquote, “didn’t work for me,” but it was so much more nuanced than that.

And actually, with appropriate support and treatment, I’ve been able to undo some of that years of neglect, but a lot of that was due to having things that were pitched at the wrong level for me. And I thought I was advocating for myself quite well, but even in those situations it didn’t work very well. And so I’d love to hear any of your self-advocacy tips that you have for people.

Hannah: I’m smiling because I had an almost identical experience with a physio post knee surgery and I did exactly the same thing. I didn’t go back and now four or five years on, I still have not really seen a physio. I’ve just self-managed. And that’s something that as a GP I feel more qualified to do. I feel like I can manage a lot of it myself and that’s a very privileged position to be in, but it’s really interesting how we’ve both had such similar experiences.

It is really difficult and there is no right answer unfortunately. Personally, I tend to sit there going, “You know what? If there’s a GP in my surgery I clearly have a clash with or I have not had a good experience with before, I’m going to say, Can I see somebody else please next time?” And-

Natasha: And you have the right to ask for that, right?

Hannah: Yeah, definitely.

Natasha: That you do have the right to ask for that?

Hannah: Yeah, absolutely you have the right to ask. You may well have to wait longer. So not because any of my GPs have been terrible at my practice, they’re great, but because I have one I know who knows me, who knows my medical history, who I get on with really, really well, I will wait an extra couple of weeks to see her unless it’s something like really an ear infection where it’s simple.

If there’s anything else, mental health, whatever, I will wait to see her because I know she gets me and I know we’ll have a good outcome and a good conversation. And I think finding those GPs is gold dust. I mean it’s not always easy, but it does make a difference.

Because I mean I’ve done a lot of work in the counseling and psychotherapy type spaces and it’s an area I’m really interested in and when you get a new counselor, when you try new therapists, they always give you a first session where you get to meet them and you see how you vibe off each other.

And it’s completely acceptable if you go, “You know what? I don’t think we’re the right fit.” That’s fine. And being able to accept that and go, “You’re not the right fit for me, that’s okay.” And actually your entire general practice may not be the right fit for you and you might need to go and register elsewhere.

And that’s very difficult if you live rurally, but actually in most places you’ve got options of entire surgeries. If you really are not getting on with your surgery and you don’t like their ethos and you don’t like the way it’s working, a lot of the time you can try and register somewhere else.

Natasha: One thing that I think is so often left out of a lot of the conversations in the chronic illness space is personality. There are always going to be some people with whom we have personality clashes or communication difficulties, and our medical professionals aren’t blank slates. What is a good doctor or a bad doctor for one person might be the total opposite for another.

Hannah: And I mean I think this is something that we don’t acknowledge enough because we’re trying so hard from the medical perspective, we’re trying so hard to uniform the whole profession. We’re all trained on how to speak, on what to say and which questions to ask, and we’re examined on that.

And a lot of the time that does work, but I’ve noticed I do work very differently now I’m up in Yorkshire to how I practiced when I was down in a very posh part of London. I phrase things differently.

I joke that when I worked down in posh South London, it was always, let’s talk about your lifestyle choices and the long term potential impacts of these. Whereas in Yorkshire, it’s you smoke too much, you drink too much, carry on like this, you’ll be dead by 50 and you can be. I do speak to patients a lot more differently. I’m not generally that blunt, but I can be. And actually, I have a far better relationship because I’m not trying to fit myself into this mold.

Is it a risky way of practicing? Hells yeah. Are some people going to not like me? Probably, because I’m a human. And until we replace the entire medical profession with robots, we are never going to get this wonderful, consistent, perfect appointment every time.

I have no idea who’s coming into my room and I have to read them, work out what’s going on and work out how best to communicate with them in the space of a minute. That is not always going to work. And so actually I think we do need to talk about personality and doctors and how different doctors are better for different people.

To do that and to be able to make changes and to be able to create a system that works better for people, we need to acknowledge the fact that the current system is falling apart around us and we just can’t do it right now.

My overriding message would be that there is very little I have not seen or heard about. There is very little that surprises me completely. And I think once we can break down some of the ick around talking about our health, around our bodies, then we end up having far better conversations.

A lot of the time people come in and they apologise for me having to look at their vulva and they apologise for me having to stick a finger up their bum and they’re so embarrassed. And I was like, “Mate, you’re like the fourth today. It’s fine.”

And I think those are the kind of open conversations we need to be having because the time and the effort people put in to feeling worried and feeling ashamed and feeling scared and embarrassed is time that I could be trying to help them.

I think conversations like this are really important because it allows us to address some of that and to reassure people that you can come in and tell me about your really weird sex life and the challenges you might be having and I’m very happy to help with that. I’d rather that than spend 10 minutes going, “So the problem is down below? When we say down below, where? How? When?” And just preparing for those conversations and thinking about what you want to get out of those conversations is absolutely key.

Natasha: One thing I’m very aware of when people ask me for advice in this area is that my experiences with communication and medical settings will be very different from people who are, for example, neurodivergent. Do you have any advice for neurodivergent people when it comes to interacting with medical professionals?

Hannah: Sometimes I think it’s really helpful to give people a heads up at the beginning of a consultation. So if it’s something that I’m going to be talking about like my mental health or whatever, I will often go in and say, not so much at the moment because I have a great GP who knows me, but I would go in and say, “Look, I have ADHD. I struggle to piece all of this together so you might need to give me a minute. I might just wander off, but I will come back. And if you’ve got any questions, please just throw them at me as I go,” and prefacing it with that.

Similarly, taking in advocates is so important and can be so helpful, but they need to be a person you trust who knows you, who you are comfortable hearing about your medical history. I think sometimes that’s a real problem. And people bring in mum who knows you, who loves you, but who you don’t feel comfortable talking about your sex life in front of. You’ve got to think a little bit about what you’re comfortable with that person hearing and seeing because that’s not a decision your GP can make for you.

But when it comes to neurodivergency, a lot of the time I will, if I know that I’m seeing somebody who is neurodivergent who might be on the autism spectrum, I will try and book them two appointments, if I think communication is going to take a bit longer, and that’s something you can often ask for.

Some surgeries just don’t have the capacity to do it, but actually I’d far rather book a double appointment in advance with somebody than have multiple appointments over weeks and weeks because we haven’t managed to communicate properly. And that kind of forward planning I find really helpful.

It’s not always possible in the current system, but saying to reception, “Look, I’m autistic or whatever it might be, I’m going to really struggle with a 10 minute appointment. Is there any way we can maybe plan a double a bit further in advance? Or is there something we can do to try and facilitate this? Would it help if I send in my concerns via an E-consult first so the GP could have a look at it and have a think about it?”

There are loads of different ways to communicate with us now. We have these E-consults where you can send messages to your GP. And many surgeries we now use text messages, photos, all of that sort of stuff. We’ve got these new resources that a lot of them came through in the pandemic.

So if there’s something you’re particularly worried about, you can say, “Look, I’ve got this weird thing on my skin, can I take a photo and send it to the GP so they can have a look at it in advance?” We can always try. I can never promise that we’re going to manage everything that we’d like to, but we can always try. And I think having that open kind of problem-solving communication partnership is really, really key to having a good relationship with your doctor.

 Natasha: A big thank you to Dr Hannah Barham-Brown for joining me on the podcast. If you’re not already, I really encourage you to follow Hannah’s work, and if you have the time do watch her two brilliant TED Talks – I’ll link them in the episode notes. 

If you find this podcast helpful, and want to support my work, please consider subscribing to my Rest Room newsletter. It’s an in-depth look at how to live (and live well) with chronic illness. Find out more and become a free or premium subscriber at natashalipman.substack.com. Premium memberships are £5 a month or £50 a year and give you access to exclusive content.  

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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Ta ta for now!

 

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• Produced by Philly Guillou at OG Podcasts.
• Episode art by Lucy Dove.
• Introductory music by Amit Rai.