Keeping Faith in Listening with Dr. Rageshri Dhairyawan

Why do so many women and marginalised communities feel silenced in medical settings? How do we keep faith in ourselves when we feel we aren’t being heard? Can we empower patients and providers to make sure everyone feels listened to in healthcare?

In this episode we speak to NHS consultant and researcher Dr. Rageshri Dhairyawan, author of the new book 'Unheard: The Medical Practice of Silencing', which unpacks why patients are so often disbelieved by their doctors and her hopes for a future where listening is at the heart of healthcare.

Follow Dr. Rageshri Dhairyawan on Twitter/X, Instagram or via her website. Unheard: The Medical Practice of Silencing is available now as a hardback, ebook and audiobook.

Listen to WIN's 2022 panel bridging secular and faith-based perspectives on mental health, Time to Talk: Mental Health.

If you've been affected by the issues in this episode, you can find support through the networks and organisations below:

• Endometriosis UK
• Pain UK
• National Voices UK

Find out more about patient advocacy options near you and ways to support the NHS.

Find out more about our upcoming event in partnership with Women's Environmental Network (WEN), Keeping Faith in Climate Action here. 

Keeping Faith: A How-To Guide is part of Women’s Interfaith Network's 2024 Keeping Faith Programme. Read more about the programme here and be the first to hear about upcoming events and ways to get involved by signing up to our newsletter. Views expressed on this podcast are the speaker’s own and may not reflect the views of Women’s Interfaith Network.

Hosted by Maeve Carlin

Produced by Maeve Carlin and Adam Brichto

Edited by Adam Brichto

Executive Produced by Lady Gilda Levy

Theme music composed by Jamie Payne

Logo and Artwork designed by Jasey Finesilver

Support from Tara Corry

Transcript

Maeve Carlin: Welcome to Keeping Faith, a how to guide, a new podcast from Women’s Interfaith Network exploring how women keep faith in ourselves, in each other, in a cause, or in religious faith so you can learn how to keep faith too.

I’m your host Maeve Carlin and today we’re talking to Dr. Rageshri Dhairyawan, NHS doctor, researcher and author of the new book ‘Unheard: The Medical Practice of Silencing’: a book that explores why patients are so often disbelieved by their doctors, why it is that some patients are more unheard than others, and how we can make sure everyone’s voices are heard in healthcare. 

This is a particularly personal episode for me as a chronically ill woman who has often felt silenced in healthcare: an experience Rageshri and I and many of you listening will have in common. In this conversation, we discuss how we keep faith in ourselves when we feel we aren’t being heard and in the health service that we love so much, that all too often isn’t set up to listen to marginalised voices. 

These are hard topics, but we hope this episode offers hope, some perspectives you might not have heard before, and reminds you of the incredible power of listening. 

Keeping Faith: A How To Guide is part of Women’s Interfaith Network’s 20th Anniversary Keeping Faith program, a year-long conversation bringing women together to unpack what keeping faith means to them. We have some really special events coming up, including Keeping Faith: In Climate Action, a shared space to build resilience and hope coming later this month to Central London. You can find out more via the links in our shownotes but for now, let’s jump into our conversation with Dr. Rageshri Dhairyawan. 

Well, Dr. Rageshri thank you so much for being here.

Rageshri: Thank you so much for the invite. 

Maeve Carlin: This is a bit of a different interview for me, as we're talking about an issue that hits close to home for both of us, and which is the focus of your new book, Unheard, The Medical Practice of Silencing.

It impacts me as a woman with multiple chronic pain conditions who had a 13 year long journey to diagnosis, and you yourself occupy this really unique position as a doctor specializing in HIV/AIDS, and someone who has in many ways, grown up in the NHS, with your mother working as a general practitioner and your father as an NHS dentist, but also as someone who had a profound and traumatic experience as a patient, which opens your book and begins this unpicking of why silencing has become such a systemic part of the health system we love so much.

Can you give us an introduction to what we mean by the medical practice of silencing and how did we get here? 

Rageshri: Yeah, I certainly can. 

[Um, so maybe I'll start by explaining kind of my experiences and why I wrote the book. And really there were three reasons why I wrote the book, but, um, the main one was my experience as a patient.

So 10 years ago I was admitted to hospital with really excruciating abdominal and tummy pain and I was in the middle of fertility treatment and I was on quite a lot of hormones at the time. And I'd been diagnosed with a very common menstrual disorder called endometriosis where pain is a really prominent symptom and this was the worst pain that I'd ever had. And I was admitted to hospital for further investigation and initially given good pain relief, and luckily for me, you know, my scan showed there wasn't anything serious going on that needed surgery, but I was still in a lot of pain. And it was then that things were really bad, so I was asking for pain relief, but not getting it and being treated like I was a nuisance on the ward. So, making up my pain essentially, which was incredibly distressing. And I was in hospital for a few days before the pain got better, and it was only through my husband advocating for me that I got the pain relief that I needed. And afterwards, I realized that I hadn't complained on the ward, and I didn't complain afterwards either. And I wondered why I felt so silenced.

And I think I felt just really ashamed. And I wondered if this could happen to me, who at that time was a consultant in the NHS, so a very senior doctor, I can speak English, I know exactly how the NHS works. And I didn't have something life threatening, what on earth happens to everybody else. So that was kind of the reason why I wrote the book, just really thinking about why I couldn't speak up and felt silenced.

But also in my job, um, I work with a lot of patients from very marginalised communities, particularly with HIV who feel very stigmatised. And these are people who feel unheard by policymakers, people who design healthcare services as well. So thinking about, you know, they are trying to speak, but no one's listening to them. And thirdly, I've been a doctor for 20 years. And it’s my intention to listen well to everyone but I don't do it all the time and I really just wanted to explore why that was. 

So during my exploration I found that this silencing of people is silencing of patients, it's also silencing of minoritized people in the healthcare workforce in research, in the medical evidence that we produce and also at Global Health. So it really is systematic in all areas. 

And I think, you know, the common response when people say I've received poor care is to be told you need to speak up, but it's really hard to speak up because you're at your most vulnerable in healthcare. And there's lots of reasons why you may not do it. You might be worried about being seen as more of a nuisance or, you know, you might get treated worse because So I think This book is all about how we in healthcare can listen better rather than expecting people to speak up for better care. 

Maeve Carlin: And it's such an empowering and moving book, and I really hope people read it. We'll be linking to it in the show notes. 

There was something you said in the book, which I've thought about a lot since: the idea that the most traumatic part isn't the pain itself, but being dismissed. And I think I really resonated with that. I think being sick is bad enough, but being treated as what, I think you said as an unreliable witness to your own body is very, very hard.

Rageshri: Absolutely. 

Maeve Carlin: And it's not about individual doctors necessarily then. It's a systemic phenomenon kind of baked into the practice of medicine from research to medical training to the doctor's office. 

Rageshri: Yeah, I found that this was happening at lots of different levels and it's really starts right at the beginning in our training in terms of how we're told to treat patients.

So we have this innate scepticism of patient testimony. And, you know, we see this in the language of medicine where we use terms in our medical histories and our notes, such as “patient claimed”, “patient denied”. We talk about medication compliance. All of this really shows that power imbalance between doctors and patients, which I think really needs to be addressed.

Maeve Carlin: And you've said that this practice of being unheard is almost universal, it crops up everywhere. Crucially, some people are more unheard than others. Who are these people who are more at risk of being unheard? And what does that look like? 

Rageshri: So I think if you're unheard in medicine, it can be really harmful for physical health and for mental health. So it can look like going to your doctor, telling them your symptoms, and then being told “Your symptoms don't sound too serious. I don't think we need to do anything here.” So dismissal. It may be neglect. It may be being told that perhaps your symptoms are all in your head and perhaps this is all anxiety or psychological.

And what this leads to is delayed investigation, delayed diagnosis, and delayed treatment, which can all cause physical harm and in the worst case scenarios, it can even, even cause death. And, you know, examples we see is, for example, in patient safety reports, such as maternal mortality reports, where we often hear that, that pregnant people have said that they, they felt something was wrong, and they've been dismissed and that's led to real harm for them.

And as I said, this can happen to any patient really. If you have a long-term condition, you're seen as being less credible when you speak because you may not be seen to be objective about your condition, because it's about you, it's by nature subjective. But it happens to some patients more than others, and that's really due to prejudice in society.

So, for example, it can be due to gender. So we know that women are less likely to be listened to, particularly women of colour. So racism also plays a part. It can be due to age. So being very old or very young in healthcare may mean that you're taken less seriously than others. It can be due to social class. So if you have a working class accent and you may not be taken so seriously. It can be due to religion and it can be due to sexual orientation and ability as well. So these are people who are at higher risk of not being heard. 

Maeve Carlin: It reminds me of a conversation we had a few years ago about women from religious minorities, visibly religious women - particularly visibly Muslim women - reporting in mental health settings. And immediately as soon as you come in the room in a hijab, assumptions are made about you and the kind of person you are. What you say is all coloured through that lens, isn't it? 

Rageshri: Absolutely. 

Maeve Carlin: There's this concept that comes up multiple times in your book, which is this idea of the ideal patient. And what does that mean and what's the impact of this idea of an ideal patient in the context of the patient-doctor relationship?

Rageshri: So this is something we get trained about, and I don't think it was ever made, you know, really explicit, but this is what we were being trained about, and it's only on reflection that I realise this, but we're kind of taught that if a patient has a certain condition, they present in a certain way.

So if you are having a heart attack, you'll have certain symptoms, and then your test will confirm you're having a heart attack. But if your symptoms are slightly different, or perhaps you're not expressing them in a way that we'd expect, then we will doubt you more. And there's lots of reasons why people don't react to their illness in a way that we expect them to.

So it could be because of their culture, perhaps, you know, they're from a culture of keeping a stiff upper lip and they don't want to appear too distressed. It may be because they're neurodiverse. Um, it may be because they're really worried about your response, and again, they want to be seen as the good patients.

They may not tell you if things are really bad. So that kind of notion of the ideal patient being how we'd expect them to be, when actually I don't think they exist. 

[00:09:24] Maeve Carlin: And there are so many things that come out of that, aren't there? I mean, one thing I was thinking of is that we know patients with chronic pain don't express pain in the way that someone with acute pain - so like pain that's from an injury or an acute sudden onset illness – might. And you talk about that with sickle cell disease, which is incredibly painful condition, that if someone's in pain all the time, they may not look like they're in pain.

And the other thing that it made me think of is about how this might reinforce these biases of who's heard and who's unheard, because if the ideal patient is the patient we see in the majority of kind of research or in textbooks, does that end up kind of prioritising a white male experience that may not reflect the experience of marginalised patients.

Rageshri: Yes, exactly that. And I think quite a prominent example recently has been about heart attacks, actually. All the research has been done on white men, you know, the classic symptoms of how a white man has a heart attack. So women will probably have similar symptoms, but they might explain them in a different way.

So instead of that kind of, you know, classic central crushing chest pain, they might present with a pain in their shoulder. So we may not believe or ven suspect a heart attack because we haven't got the research to show this is a very common and symptom of heart attacks in people. 

Maeve Carlin: And of course, skin conditions look extremely different on white skin than on darker skin. And if you're not taught that in medical school and you don't know what to look for, that's a huge problem, isn't it? 

Rageshri: It's, yeah, it's a really serious problem. Um, you know, there's some forms of meningitis in children, which present with skin rashes, for example. So if we're missing that, um, then that can be disastrous.

Maeve Carlin: You talk about the long-term impact of repeated silencing, where the patient actually takes on the silencing themselves to avoid more rejection. This description of self-silencing really struck a chord with me. I actually found an old letter for self-referral a few years ago, something which had I followed up probably would have cut out a couple of years of uncertainty for me. 

But the doctor who gave it to me had spent the first half of the appointment telling me that it wasn't their job to deal with my anxiety about my health and they thought I was wasting their time. And I felt so shamed by that that I never called the number. 

How have you witnessed this self-silencing, either in your research or in your own experience? 

Rageshri: So first to say I'm really sorry that happened to you because that just sounds like a, an awful experience and I think it is part of our job to make people feel better, whether that's anxiety or very real symptoms, it's, we are here to make people feel better and we shouldn't be making people feel worse.

I think this self-silencing happens a lot and is a consequence of people being repeatedly unheard because you can understand it, that if you're continually going back to your doctor and they're not listening to you, then why bother going back. And I think this really fuels kind of healthcare avoidance, people not being able to take their medication and mistrust in healthcare services. So it's a really important thing. 

And an example I give in my book comes from my specialty. a scenario where, there is a patient with HIV who says they're taking their treatment every day. And, you know, HIV is now really easy to treat. We have effective treatment, which if taken every day, means people live long, healthy lives.

And we can monitor this with blood tests that show that the virus in the blood has been suppressed by the medication. So this patient is telling their doctors, “I'm definitely taking my medication as you tell me to do”, but the doctors can see from the blood tests, the patient is clearly not on treatment because, uh, the virus levels are very high in the blood.

And this is something that I've seen, um, in my own clinical practice, which is why I've described it in the book. And I think the reasons for this is that the patient wants to be seen to be a good patient, to be doing what the doctor's saying, but they've tried to complain about their medication before, so to say, you know, “I'm getting side effects, I'm worried that the tablets are too strong for me”, and every time they've said that to their healthcare team, they've been told, don't worry about it, just get on with it and take it.

So they stopped telling their medical team what was going on. They self-censored, they just stopped it themselves and they continue to tell the team that they were still taking their medication. So, you know, I think we see this in lots of long-term conditions where you have to take medication every day.

So I think it's a really important thing. Um, and it can cause healthcare avoidance, which can be very serious.

Maeve Carlin: It also comes back to expertise, doesn't it? Because of course the doctor has an enormous amount of medical expertise, but they may not have the lived experience, the expertise of living as a person with that condition, taking that medication, and what it really feels like to be that patient.

Rageshri: Absolutely. And this is something I talk a lot about in the book about who are seen as being experts in medicine and why we need to rebalance that power between doctors and patients. So doctors are trained to have medical expertise. We go through a lot of training and that's very important to do our jobs safely, but we must understand that patients also have expertise in their own bodies.

No one knows. your body better than you. If something's wrong, you know it, and we need to better value that lived experience. And it's by working together and putting both the medical and the lived experience together that we can really make people feel better, make diagnoses and give the right treatments.

Maeve Carlin: And that leads really naturally into my next question, which is the sort of other side of the coin, where you talk in the book about the therapeutic power of listening and bearing witness to pain or suffering, even if there aren't easy solutions. Can you share what impact we see when patients feel heard?

Rageshri: Absolutely. So, in our training, I think we're very much taught that we can fix patients, and I think healthcare, um, naturally, you know, attracts people who are fixers, who want to make people feel better. And for many conditions, we may not know what to do, there may be uncertainty, or we may not be able to fix people, we may not be able to help.

But we do know that just by listening, and as you say, bearing witness to what people are saying, bearing witness to their suffering, that in itself can be really therapeutic. So making patients feel heard can be a part of a healing process, not just a fixing process. And what it looks like is that patients actually may leave the consultation feeling like they've had a therapeutic intervention.

They might actually leave feeling better. It increases trust between the patient and the doctor, improves communication. There's more mutual respect. And it means that patients are more likely to attend their appointments and really say what's going on and say, you know, I'm worried about this. So using their doctors as a source of medical information rather than other perhaps less validated sources off the internet.

So I think there's lots of good reasons for, for patients being heard. And, you know, that might be what it looks like. 

Maeve Carlin: Yeah. Not turning to Dr. Google and the notorious WebMD. Which tells us all we're on the brink of death at any moment. And it also, it's about the relationship between doctor and patient then, isn't it? Because that relationship is fundamental to you feeling safe and being able to get the care you need. 

Rageshri: Absolutely, the relationship is really important for both patients health. It's actually really nice for us as doctors as well to have a good relationship with our patients. And I talk in the book about how we need to promote continuity of care.

We know it's harder to see the same GP these days. And I think that's something policymakers need to really look at, because if the patient and doctor already know each other, then you're not starting from scratch. And that kind of mutual trust and communication is already there. And that's better for everyone.

Maeve Carlin: And of course, post COVID with the move to online appointments, double appointments are much harder to get and we know GPs are under so much pressure. So that relationship is under pressure from both sides, isn't it? 

Rageshri: Yeah, absolutely. Um, and I think it's really important that, you know, we take a look at healthcare as a whole and think about how we can create better listening environments, being that giving enough time if we need it in our private space, talk about continuity of care and also really kind of incentivising listening. So recognising its value and not just thinking productivity is number of patients seen, diagnoses and treatments. So I think that needs to be brought into policy. 

Maeve Carlin: And to give a positive example of a good listening environment. In best case scenario, listening is a huge part of treatment and management of chronic pain now, including group pain management programs, like the one I went to.

I actually refused to go unless they created a group that was just women, because that was such a fundamental part of my experience of being sick and my interactions with doctors. And keeping faith with each other through the uncertainty of a chronic condition, feeling seen and believed, hearing stories that sound like yours for the first time, maybe. There were also more traditionally therapeutic interventions involved, but I don't think they were less important than the experience of being heard. 

Rageshri: Yeah, and I think that points to the importance of therapeutic interventions not being just drugs. There's lots of different ways we can help people. And we need to really widen our, our belief, you know, our thoughts about what, what works. 

Maeve Carlin: Exactly. Wellbeing as well as health and a more kind of broader, holistic understanding of health. 

Rageshri: Yeah, absolutely. 

Maeve Carlin: Well, you've documented this power imbalance in the practice of medicine, which sets up the doctor as the expert and the patient as a potentially unreliable witness, who you say doctors have often been trained to treat with scepticism.

I was particularly horrified reading your book when you described how ancient this distrust between doctor and patient is, using the example of 13th century medical texts, and a particularly unpleasant 17th century doctor who described some of the groups most likely to make false reports about pain, including “impudent women” - which I guess includes me - and the “undeserving poor”. So, how do we keep faith in ourselves as the experts on our own bodies when we come up against this dynamic in healthcare?

Rageshri: So I think it is understanding ourselves that we are the experts in our bodies, no one can tell us differently and really pushing back against doctors who make us feel like we're being gaslit. So, you know, what we feel isn't what we feel. And in the book, I do have tips on how patients can self-advocate.

And although the book is about, you know, you know, the healthcare systems listening better, I do think it's important that patients can self-advocate while, while we get the health system better. Um, so there's lots of tips I have in there and, you know, one of the main ones includes going along with someone if you can.

So if you're worried about seeing your doctor, taking someone with you that you trust and kind of prepping them beforehand and saying, you know, “I want to hear this. I want to ask these questions.” So having someone there who has your back and can keep reminding you, how you were feeling before the appointment, because we know that appointments can bring a whole range of emotions.

You might be hearing test results that are scary. You know, there's lots of things coming up. So having someone there can really help keep you focused. And if you can't have someone there, then and write it all down before you go in. So, you know, you have your list. 

Maeve Carlin: I think some people, the doctor's room itself is enough to make your brain go completely blank, isn't it?

Rageshri: Absolutely, and certainly for me in that position, I have to keep remembering and I actually write stuff down for myself as well, because I think I'm going to forget this. 

Maeve Carlin: I'm a big believer in taking notes before an appointment. And I was also thinking when I was reading your book, what were the best appointments I'd had? What were the best interactions I'd had from the doctor's side? And it was when I felt that I was being treated as a partner in the conversation and someone with kind of meaningful contributions to make. 

So my favorite consultant would often draw me diagrams to explain uh, what they were talking about, or a treatment option they were considering, or another doctor would - if they didn't think something was worth investigating - they would explain why. So I knew that they'd heard me and made a conclusion based on what I'd said. 

So I think, yes, absolutely empowering us to go into the room feeling like we have agency, but also it made me reflect, what is a positive interaction with a doctor and what does that look like? 

Rageshri: That is so interesting for me to hear.So thank you for sharing your thoughts about that as well. Yeah, I also write things down for my patients, um, particularly starting them on a new medication or changing their medication, and you can also write things down while you're there. So if you're writing down something the doctor says and you don't understand it, then ask them there and then, I don't understand what you're saying.

And also ask, you know, validated information like websites and leaflets, all those things can really help as well. And, lastly, just from what you were saying, I do say in the book that, you know, we do need to listen to patients. We don't have to agree with everything that patients may ask us, but we do have to explain why we don't agree. And signpost to more information, maybe offer a second opinion, all those things that will make patients feel heard, even if we don't necessarily agree with what they're asking. 

Maeve Carlin: Exactly. And I think that's also bearing witness to the fact that a lot of patients, the doctor's office is not a safe place for them. And they have had previous experiences of being silenced, being unheard. And they're already anticipating that when they walk in the room. So it's not what you as the doctor in that interaction have said or done perhaps, but what they fear might happen. 

Rageshri: And we need to be aware of that. Um, and you know, we may see 20 patients a day and we have to acknowledge that each - while, you know, it's just another appointment for us - for every patient, it's a really important thing that's happening. They might've been waiting months to see us. They might have something really important they want to say or get from the appointment. And we should recognise that they may have had bad experiences in the past. So really come to each consultation anew and thinking about what a momentous, you know, uh, moment it is for the patient in front of us and trying to do the best that we can.

Maeve Carlin: But. of course, that's hard to do if you're feeling stretched and not being able to take proper breaks and all the stresses and strains that are on people working in a very stretched health service, isn't it? 

Rageshri: Absolutely. And that's why I think this is a systemic issue. And we need to think about how we can build in breaks. So perhaps in the middle of clinic five minutes, just to step out, get some fresh air, go to the toilet, have a quick snack, that kind of thing. But also really build in things like supervision, which is not routine for doctors. We will often just debrief if something really awful has happened as a team. We don't have it built into our regular timetable.

So having those opportunities to talk about kind of more difficult consultations, preparing for them would be helpful for us. And as you say, having the time, the privacy and the space. And I also write in the book that doctor wellbeing is a patient safety issue. So when we're burnt out or have compassion fatigue, you know, we're not going to listen well. So we need to have good employment rights and to be able to work in an environment where we don't feel so stressed. 

Maeve Carlin: Exactly. So important. 

You wrote about the transformative impact of patient advocate movements, using an example from your own area of medicine, HIV/AIDS, where LGBT activists turned their grief and rage about the silencing of their community through the AIDS crisis to transform the conversation around policy and treatment for HIV.

Today there is so much meaningful peer support and advocacy online, whether it's sharing experiences or swapping silly memes that disrupt that power relationship between doctor and patient. I wonder how you've seen this new movement of online patient advocacy playing out, and what do you think the implications are?

Rageshri: So I'm all for it. I think, you know, it builds community, it builds solidarity, it helps reduce loneliness and isolation. I think that's all  reallyimportant. You find yourself validated when you're speaking to people in similar situations for you. And I think particularly since COVID, where particularly, for example, people with long COVID or people with other conditions might be more stuck at home, less able to get out, then, you know, having that online space is really, really important.

And, you know, I talk about peer support in the book as being such a valuable tool. Um, I think it's important to say that, you know, um, peer support can be informal, which is great, but it can also be formal. And I think we need to see more paid, trained peer supporters out in the community or in health care centres who are available.

And, you know, for example, in my specialty in HIV, I'm incredibly lucky that in my clinic, we can easily refer to peer support workers, and some of them are in clinic already. So we can just say to a patient, “I think you might benefit from talking to this person. What do you think?” So yeah, I really welcome online peer support, face to face peer support, and these online communities.

I argue in the book that we don't want patients to have to advocate for themselves as individuals. We shouldn't make them do that. But as groups, I think patient power is such a, an incredible force. 

Maeve Carlin: It's funny, there was a particular meme that kept popping into my head as I was reading your book. Which is one where the doctor says, “are you sure you aren't just seeking attention?” And the patient says, “Yes: medical attention.” It kept coming into my head the whole way through the book. Yes, I am being demanding, actually. I would like help. 

Rageshri: “This is why I'm here and this is your job.” Fantastic. 

Maeve Carlin: Well, what would you say to somebody listening to this, going through an experience similar to ours, who is genuinely frightened about their health and feeling unheard in their interaction with doctors?

Rageshri: So yeah, as part of my advocacy tips, I've talked about bringing someone with you already. Um, so having an advocate with you can be really helpful, but also really preparing for your consultation. If it's not that, you know, you've been admitted as an emergency, but if you know you're going to have an appointment or an admission, make sure you have a full list of your medications, you know what you're allergic to, you have any recent letters or test results, just in case, it's just always helpful to have the information with you.

If you have any communication needs, it's really good if possible to let us know in advance so we can arrange for interpreters if needs be or any other accessibility needs. And it's also really important to know your rights. So what are your rights as a patient? You've got a right to have good healthcare.

So if you feel like you're not being heard by your doctor and you felt able to say this, or the person with you felt able to say this, you could say, “thank you for what you've said, but I'm still worried about this and you haven't quite addressed this.” So, you know, give us a nudge. We may not realise that we haven't addressed it. It might just be us not realising as opposed to purposely trying to silence you. Um, so give us a nudge and we will hopefully respond in a good way. 

If not, then you can always ask for a second opinion. And, you know, I think people really worry about this, but we don't get offended actually. And we ask for second opinions all the time. I'm, you know, often speaking to colleagues when I'm not sure what to do with a particular patient, and we'll give opinions. 

And know who's in charge of your care. So if you're in hospital, you know, find out who's the consultant in charge of your care, because they are responsible for you. They may not know what's going on. So unless they hear about what's going on, then you may not get the care that you need. So know that you can complain upwards or ask to see someone more senior. 

In England, for example, there's the PALS system, which is a system in hospital where you can complain and you'll get help with that. If it's a GP surgery, know how to email the practice manager. So there's all things that you can do hopefully to get the care that you need. 

And it's really horrible for me to hear as a doctor that people are scared of going into healthcare, but I know that's a real reality. It happened to me. I was scared when I was in hospital. Um, so I think, you know, I really hope. the book gets taken on and we can do things to make patients feel less scared. 

Maeve Carlin: Yes. I, I hope so too. And I, I think your book offers so much hope for a way that we could make that happen. 

And I would just add to that as well, that as far as I know, there's no test that a doctor can do that says you aren't feeling what you're feeling. So even if they don't know why you're feeling what they're feeling, it doesn't mean it's not real. 

Rageshri: Absolutely. And we get uncomfortable with uncertainty and actually there's lots of symptoms that are medically unexplained. That might be because we don't know what's going on and, you know, perhaps they'll better very quickly.

We might not know what's happened or because we don't have the medical evidence yet. So we haven't done the research to answer all of our questions. So, yeah, there isn't a test which tells me that you aren't feeling something. You are the expert in your body, you know you're feeling it.

Maeve Carlin: And bodies are complicated. Doctors aren't omnipotent. 

Rageshri: That is very true. 

Maeve Carlin: And it also comes back to another element of your book, which is talking about the knowledge gaps that are still there. And so much of that plays into where the inequities are, whether that's big knowledge gaps around women's health or high rates of neonatal death for Black mothers and Black babies. So there are gaps that still need to be filled, aren't there? 

Rageshri: Yeah, and I think it comes down to who gets heard and heard. So, if we think about women as a group of patients, their symptoms have not been taken seriously for centuries. And what that's really led to is a lack of research in issues to do with women's health. So, for example, endometriosis is the example I use in the book because I have it, but you know, there's so much stuff we don't know about it. We don't know what causes it. We don't know how to treat it. We don't know what to do about infertility. And I think, you know, there's just been this massive research gender gap and it's, you know, it's getting better, but it's still there.

When we look at what diseases get funded, I think we also see gaps for diseases where patients really feel silenced. So when we think about things like ME and chronic fatigue syndrome, um, we know this is a group of patients who've really fought to get heard and have been silenced for many years. And there is a real lack of research to really understand what causes it, what actually works. Um, And there's a real lack of kind of objective medical evidence with that. So we don't have a test, for example, which will tell us that someone has it. 

So it is patients who've been silenced for a very long time, where we still see these research gaps. And the problem is when there is that gap, when we don't know what to do as doctors with patients, then we're much more likely to shut patients down when they're talking. So that kind of cycle of not listening carries on.

Maeve Carlin: Towards the end of the book, you talk about how all too often, patients or activists talking about health justice and equity are constantly asked to discuss their trauma and, actually, we need more opportunities to share our joy. So I wondered if we could both share something joyful to end with or something that's helping us keep faith in this conversation with so much work still to do.

Rageshri: Um, when I was writing this book. There was a big part of me that was very worried that I was just going to annoy all my medical colleagues and I'd be like this doctor that no one talks about or listens to actually. And actually the response from doctors and other clinicians to the book has been incredible.

And even just this morning, I talked to a group of clinicians and researchers and everyone is very interested. Everyone acknowledges that this is a problem. So this is not something that just patients talk about. Doctors talk about it too and experience and people want to do better. So I hope, that brings me joy to know that as a profession, we want to improve things. And I hope that brings a bit of hope to people who are listening as well. I'm sure it will.

Maeve Carlin: And I guess my piece of joy would be the relationships and solidarity I've built with other chronically ill and disabled women, which has so enriched my life, that it's, it's been the unexpected silver lining of being sick, I think. And I can't imagine my life without it. Um, so I'm very grateful for that. 

And I'm also incredibly grateful for for the doctors that do listen and every patient who has that one doctor who goes out of their way to do something kind for them, they will always remember that doctor. Always.

So there's hope, a lot of hope, I think. 

Rageshri: I think so. It's lovely to hear. 

Maeve Carlin: Well, thank you, Rageshri, for making the time and for your work. I'm so grateful. And I know it will mean a lot to a lot of us. 

Rageshri: Thank you so much. I really enjoyed the conversation. 

Maeve Carlin: We’re so grateful to Dr. Rageshri for her openness and her insights on this issue which has touched so many of us. Her book Unheard: The Medical Practice of Silencing is available now as a Hardback, Ebook and Audiobook and you can find the link in our shownotes. 

If you’ve been affected by the issues we’ve discussed here, please know you are not alone and there is so much support out there, with people who are not only ready to listen but have stories just like yours to share. Go to our shownotes for more resources and information. 

And on a personal note from me, I'd like to dedicate this episode to the women from the COPE Pain Management Program, who listened, made me laugh, and shared so much of themselves throughout our journey together, and to the doctors who heard us. Thank you.

Thank you for listening to this episode of Keeping Faith: A How To Guide. Subscribe now on your podcast app to be the first to hear about our upcoming episodes, and please leave a review or share with a friend to help more people find us. To find out more about the podcast, the 2024 Keeping Faith Programme or to get involved with the Women’s Interfaith Network, you can follow the links in our episode notes or go to wominet.org.uk. Until next time, Keep Faith!

Keeping Faith: A How-To Guide was created by Women’s Interfaith Network. The podcast is co-produced by me, Maeve Carlin, and Adam Brichto. Our executive producer is Lady Gilda Levy. Theme music was composed by Jamie Payne and our logo was designed by Jasey Finesilver. Additional Support from Tara Corry.