Rethinking Recovery

A little while back, I stumbled across a teeny tiny book called Recovery: The Lost Art of Convalescence. I read the whole thing in one very short sitting, and then excitedly messaged my producer Philly telling her I must interview its author, Dr. Gavin Francis.

The book is a meditation on recovery and that’s what we’ll be exploring in the latest episode of The Rest Room podcast. If recovery doesn’t have to be about a total absence of ill health. What should we be thinking about?

We hear from Dr. Francis about what recovery means to him, what needs to change to give people the best chance of recovery and about how our society isn’t set up to allow people the time they need to recover. We also consider the roles fresh air, nature and our own beliefs play in our health and how you might start to reimagine or re-write your story when you live with a long-term condition.

It definitely gave me a lot to think about.

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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.

In today’s episode we’re talking about recovery.

As someone who’s lived with chronic conditions since I was a child, I’ve spent a lot of time thinking about what recovery can mean.

In our traditional, cultural understanding of recovery, it’s pretty linear, right? You get sick, you go to the doctor, they give you medication, perform an operation, or put you on a treatment regimen. Time passes, and you get better. Like, you fully get back to how you were before you get sick. Or, if you’re one of the unlucky ones, you don’t make it.

But for so many people, there exists a medium place. Where you don’t recover, but you keep living. But does recovery have to mean a total absence of ill-health?

The book centres around the theme of recovery and in this episode we explore what that means – especially for those of us with chronic or long-term health conditions. If recovery doesn’t have to be about a total absence of ill health. What should we be thinking about?

A big theme of The Rest Room is looking at how we can find ways to live with chronic illnesses, when so often the systems aren’t set up to support us. Can we rethink what we mean by recovery, and what needs to change in order to give people, all people, the best opportunity to live well?

To start, I asked Dr Francis why he wrote the book…

Gavin: Like all GPs, like all healthcare professionals, clinicians have had a really very difficult time over the last couple of years with the pandemic. It’s been extraordinarily difficult to meet the needs of my patients.

And one of the themes that was recurring again and again throughout this pandemic is how often I was having to talk to people about general principles of recovery. Not just from the effects of COVID-19 which, of course, can be significant and long lasting. But also talking to people about how to recover from the damaging effects of repeated lockdowns and from all the difficulties that people were having, because they couldn’t access their normal healthcare because hospitals were so busy dealing with COVID.

Those conversations were happening again and again and again, and I was thinking a lot too about how to recover from the pandemic as a society, not just as an individual. And decided to put all my thoughts and reflections and explorations of the theme into one place, one short, quite accessible book, which would bring them together.

Natasha: Now, let’s rewind briefly to 1948 when the founding constitution of the World Health Organisation defined health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity’.

That’s…quite intense.

Of course science and medicine has come a long way since then, but Dr Francis believes that part of the problem when it comes to recovery is that our aim is often unachievable…

Gavin: My own view of recovery and how I see patients managing to do well in terms of recovery, is people have a much more supple and flexible interpretation of what that can mean.

My own view is that health isn’t some kind of extreme that we have to strive towards to achieve, it’s much more of a balance between lots of different elements of our lives. In different phases of life, that balance will be different. It’ll be in different places, and we’ll have to use different capacities to achieve that balance.

Natasha: One of the most vivid memories I have from when my health bottomed out in my 20s was desperately trying to find somewhere to GO to convalesce.

For months, I’d been predominantly trapped within the lilac walls of my childhood bedroom, away from my friends, away from work, and left wondering what the rest of my life would be like if this was now my new normal.

As is so often the case, with worsening health and very little that the doctors could do at the time, my mental health suffered. I couldn’t live like this, and I didn’t want to live like this.

During that time, I recall conversations that my mum had with my grandma about convalescent homes – a quiet place by the sea or in the countryside.

I’d spend hours frantically Googling, searching for a convalescent home I could escape to. I could find rehab centres for drug addiction and eating disorders, but short of going on a yoga retreat, I couldn’t seem to find anything that was for someone in my situation and could get me AWAY.

It made me think about how if I suddenly came into a huge amount of money, my dream would be to create a convalescent home for young people living with chronic illnesses. It would be somewhere they could go to rest and recover. Not in the traditional understanding of recovery, but to better get to grips with the challenges of their lives. They’d have access to a doctor and a physiotherapist and mental health support. A place to get involved in gentle activities, somewhere beautiful that truly provided the opportunity to rest and find some peace.

But that’s a bit of a pipe dream, really. So, I asked Dr. Francis how we can start recontextualising recovery when you have a long-term condition that can’t be cured and are trying to figure out how to build a life with it.

Gavin: Well, probably there’s a couple of things I can think of to say to start answering that question. One would be, do you know the word convalesce means to grow in strength? That’s it comes from a Latin root as well about building your abilities and your strength slowly up after an illness.

And do you know the reason I subtitled the book the Lost Art of Convalescence was because if we look back in medical history until the 1950s, essentially, we had very few drugs at our disposal to treat most conditions. And so, a much greater part of medicine was about resting and strengthening the body to be able to fight illness and to cope with illness. We used to have convalescent hospitals, we had convalescent homes.

Yeah, we had a completely different attitude really to the importance of convalescence. And I don’t want to go back to the old days. I’m not in any way nostalgic for an era before antibiotics. No chance. I wouldn’t want to give up antibiotics. I wouldn’t want to give up all the chemotherapies and the robotics surgery and the DNA profiling that we’ve got nowadays.

But I do think that in the rush to modern medicine and the growth of the belief that all you need is the right prescription, we’ve lost something really important. Which is about allowing adequate rest and slow rehabilitation. That’s the first way of answering your question that I think essentially, the advent of new drugs, steroids, antibiotics, inhalers, all those antihistamines and antidepressants that all came along in the 1950s and 1960s has duped us into thinking that we just need the right drug. But actually, there’s a huge amount to recovery and convalescence that’s got nothing to do with drugs.

And it’s about allowing the body to become as strong as it can be and learning a new kind of language of the body. Learning to understand your illness and the way your illness affects you in order to build towards a life with the greatest capacity that you can. And so, yes, I would like to reinstitute that kind of attitude, at least in part, back into medicine. That it’s not just all about the drugs.

The second way of answering was just, there’s a wonderful philosopher of illness in Bristol that I quote in the book, and talk about. A Professor of philosophy called Havi Carel. And Havi Carel has a very rare lung condition, lymphangioleiomyomatosis, or LEM she calls it for short. And this is a condition which can cause real debilitating breathlessness and very frightening deteriorations in which she’s had to be rushed to hospital.

And it’s a condition that’s essentially not amenable to treatment. There are some drugs that can slow its progression, but ultimately, the people with end stage LEM often end up having to have lung transplants. And she writes very beautifully about the idea of living well with illness. About how you have to trim your sails a little bit to the wind of the illness, rather than expecting the wind to be able to die down. And also, about how she’s had to recalibrate her expectations over the years, and look for new places to find joy and hope in her daily life.

And that’s something that people like Havi, who live with chronic illness, have had to learn on their own. It wasn’t particularly something that was taught to her or explained to her by rehabilitation clinicians. And she writes as well about how the difficulties she’s had going through a hospital system that’s tailored very much just towards attempting to cure. And where the doctors and the nurses that she’s seen when she has a condition that is not curable. Some of them have had a tendency to dismiss her. Because they say, “Well, your problem isn’t curable.” But there’s still, with incurable conditions, there’s all sorts of things that it’s possible to do in order to help ease suffering, and help people live with those kinds of conditions. And she writes very beautifully about that.

Natasha: I really relate to this. I have so often felt as though I’m figuring everything out for myself as I go along, that so much about my health is very much in my own hands. And it’s a heavy burden to carry.

Why is it that society just isn’t set up to help people with chronic and long-term conditions?

It’s a topic that seems to have gotten more coverage since the pandemic… more and more stories are coming out about the treatment (or in many cases, significant lack thereof) for patients recovering from Covid.

For those of us who have been ill for many years, hearing these stories, unfortunately, doesn’t come as a surprise. The lack of belief, the lack of recognition, the lack of care or treatment, the inability to rest (more on this in a bit), and the lack of support from employers… recovery is just not supported for the majority of people, and many people end up sicker than they would be if they were given the chance to recover.

So, is our system broken? And if so, how do we fix it?

Gavin: General practitioners are completely under the cosh at the moment because it’s a very underfunded service. Before the pandemic, we only really had 10 minutes per patient, and now, just with all the difficulties of access and the backlogs of COVID, there’s a lot of practices that have become quite overwhelmed. But in general practice, I think we’ve always been a lot more aware of this than in some of the hospital specialties, that living with illness is a lot about recalibrating expectations, and about setting achievable goals, and finding ways of managing symptoms, rather than always seeking after cure. So, I would like that perspective to be much broader within medicine as a whole, including with my hospital colleagues. Rehabilitation physicians are wonderful. They’re a wonderful resource and there’s so few of them.

So, my patients that have got complicated, multiple sclerosis or motor neuron disease, or a whole host or variety of conditions, currently incurable, that I’m struggling to manage their difficulties. When I can call on a specialist rehab clinician, I find them a magnificent source of advice and inspiration. There’s so few of them. So, I would really like that specialty of rehabilitation medicine to be a much bigger specialty. I think we need a lot more doctors and nurses that are specialists in rehab, as well as physiotherapists. The rehab hospital in Edinburgh, near where I work, is mostly physiotherapists.

Lastly, if you’re offering me a magic wand, my first wish of the magic wand would be to ask people to value healthcare more than they do, therefore prepare to tolerate adequate taxation that would be required to fund the NHS the way that it needs to be. NHS is a magnificent system, but we spend about a third less on healthcare than the French do, than the Germans do. And because we spend a third less, or we’re prepared to put a third less money into the system than our European neighbours, we have a much less well funded system. So, our system is creaking at the seams. So, the first wave of the magic wand would be to encourage people to use their power at the ballot box, to vote for the kind of NHS they want, rather than just wishing for it.

The second would be, once we’ve got that expanded base of resources within the NHS, comparable to other European countries, I would like to see a greater emphasis put on community services. At the moment, in the NHS, it’s extremely focused towards hospital services. Which is fine, because hospitals do very expensive procedures, and it’s very expensive to keep people in hospital beds and to staff those wards properly. But there are…more than 90% of the patient consultations in the NHS take place in general practice, and general practice receives about 8% of the funding. So, that’s just general practice, before we get onto community physio, community mental health, occupational therapy.

I mean, these services that work within the community are so underfunded, so unbelievably underfunded. I think it’s really quite scandalous. If you are wanting to develop a new type of cardiac valve say, or you want to trial a new chemotherapy that might benefit a small number of people for a rare cancer, you can usually find that money in the NHS, which makes sense. If I was the one with the rare cancer or I was the one that needed the unusual cardiac valve, I’d be delighted. But it does lead to this huge imbalance, where the needs of a very few, if their treatment is dramatic in some way, or tabloid friendly in some way, get met. Whereas the needs of the thousands, the hundreds of thousands of people who are stuck at home with difficulties and need community services, ends up being largely forgotten or brushed aside.

So, I see that most extraordinarily in the mental health sector, where our community mental health services in Scotland really are completely on their knees. I also see it in terms of community rehab and community physiotherapy. People get a lot of input during their first year after a spinal injury say, in a specialist spinal unit. But then once they’re home, they’re all set up at home with hoists and carers and so on, the availability of any kind of ongoing specialist support drops off. It’s almost impossible for me to arrange specialist community support for people living with that kind of disability at home, and I think that’s the wrong way around really. I think we need to put far more emphasis into community support.

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One of the subjects Dr Francis talks about in the book which I think is really interesting to consider, is nature. I asked him why he feels nature is so important when it comes to recovery…

Gavin: My old GP, the GP who was trained in the 1950s who sent me to hospital with meningitis, he had to study botany as part of his medical school curriculum because, do you know, until quite recently, most medications came from plants.

I think that there was a strong understanding of the fact that human bodies, human beings, are part of nature. We respond to nature. Our medications all, until recently, came from nature.

The paradigm or the way that medicine was understood for centuries and centuries before the modern era was all about humours and balance between different kinds of humours, and we can make fun of that perspective now because it is in some ways quite silly when you think about it with the knowledge of the scientific medicine we have now, but it also held at its centre this idea of balance and health as a balance, which is one very integral to visions of nature and of gardening too.

Do you know? I’m convinced that doctors and nurses are more like gardeners than they are like mechanics, because just the same way as a gardener has to create the right environment for the garden to flourish, but nature does the work of the garden flourishing, the gardener doesn’t actually grow it themselves, in the same way, in healthcare, we have to try and create the right environment for the body to heal itself.

There’s very, very few instances where healthcare providers go in and actually fix something. What they do is, they create the environment for the body to fix itself. Even when you stitch a wound, it’s the body that heals that wound, not the sutures.

So, I believe on one level we’ve lost sight a little bit of how important nature and the natural world is for our understandings of the body and health. But, on the other hand, and this is to sort of extend the discussion, I do believe that there’s something very powerful about nature and natural settings in terms of making us feel better, not just for our mental health, but for our bodily health too.

Do you know? Florence Nightingale always insisted that you have a window that could open, and the window looked out on something green and growing and alive, and they’ve done studies now to show that if you’re in a hospital that does look out over something like a park, then you need less painkillers than if you’re in a horrible, sort of closed in, shuttered cubicle without windows that open. I think that’s really interesting. It tells us something about our humanity.

In my own city, there’s guided walks in some of the parks that are arranged for people with mental health problems that have great results. They have better results in some cases than specific counselling because there’s a kind of pleasure and a power in getting together with others and taking a walk through somewhere green, growing and alive.

So when I’m encouraging people along the path to recovery, I often try to encourage them to pay close attention to their environment, just the way a gardener would have to pay very close attention to the soil, the direction of sunlight, how wet or dry the earth is.

We need to pay close attention to our own environment for healing. We need it to be as clean as we can make it. We need it to be quiet. We need to have access to sunlight. We need to have access to fresh air. All those things that the old convalescent hospitals took for granted but which our modern hospitals seem to have forgotten.

I think they’re quite hard to prove now because there’s so few of those old hospitals, but there’s no doubt that people feel better in those kinds of environments, and if medicine is anything, surely it’s the art of making people feel better.

I would like to re-institute as well a greater awareness of the importance of nature and the environment.

Natasha: This is something I’ve thought a lot about over the years. So many hospitals are just so…clinical. And I know, obviously, they’re clinics. But there’s a coldness. A beigness. There’s no personality. The chairs are uncomfortable and made of cheap plastic. Many of them are old, dark, and run down, and don’t feel like a conducive space to feel better.

I don’t doubt that they are in fact very clean spaces, but they often feel dirty to me – as though you want to shower it all off when you get home. That might just be me, though. I always thought that fresh air, windows, greenery and some colour would make the whole experience feel so much less grim. And so much more human.

I’ve also realised over the last couple of years how much I underestimated the role of light and fresh air to how I’m feeling. Having spent many years in a darkened room, not leaving the flat for weeks on end, I now will go and stand or sit by a window and breathe in some fresh air, and it really does lift something in me.

In fact, a few Friday’s ago, we had such beautiful weather – it was crisp and sunny and I went and sat down on a bench outside my building, listened to a 00s playlist on Spotify and I was practically giddy afterwards. It felt so lovely.

My little detour aside, getting access to the right medical care (whether that includes a window with a view or not) shouldn’t just be about having the support to be able to stay alive and function on a basic level within society.

Surely that’s the least we’re entitled to? People living with chronic conditions deserve to live full, happy lives and to find purpose and meaning, just like everybody else. But there often aren’t things in place to support that, so people end up living in what Occupational Therapist Jo Southall calls “survival mode”. You can hear Jo talk about that more in our last episode, which is all about managing the boom and bust cycle that so many of us live with.

We also need to be given the time and space to rest and recover, whatever we mean by recovery. We need permission from ourselves, our loved ones, our employers. We need permission from society.

As Dr Francis explains, there are many hurdles we currently face when it comes to this…

Gavin: There’s a number of different things that’s worth mentioning with regard to our attitude to rest and our attitude to work. I should say at the outset that we are social gregarious species as human beings, and some kind of engagement and activity definitely helps us. We absolutely need rest. But in the 19th century, there was advocated this thing called the rest cure, where people were basically ordered to bed for months on end. And that in itself wasn’t helpful either because it encourages the strength of your muscles to fade, encourages your social connections to whither. And so I’m absolutely behind raising the importance and emphasising the importance of rest. I also have to add a caveat to that or a caution that it’s really important to try to keep activity and mobility and engagement with life and with society going too.

Otherwise we can find ourselves very, very isolated and very weak. That’s the first thing to say, I suppose, about rest. How important it is but also that remember health isn’t an extreme, it’s a balance.

Natasha: Of course, how much rest we need is very individual and depends on your condition and how it impacts you.

In the context of living with a chronic condition, we need to remember that activity, mobility, and engagement with life can look different for everyone. Because, when we hear those terms, we often think “do things like a healthy person”. But that doesn’t have to be the case at all. It’s about finding safe and sustainable ways for you to engage in these things, no matter where you’re at with your symptoms. So, if you’ve been bed-bound, sitting up in bed, supported by pillows, starting with a few seconds at a time, is activity. If you struggle with cooking, sitting down at a table, chopping one vegetable and contributing towards a family meal, is activity too!

We talk about this a lot more in our movement and pacing series.

Gavin: Now there’s a huge barrier to people taking adequate rest, which is the rise of the economy that we’ve got at the moment. We’ve got a very gig economy where lots and lots of my patients don’t have a proper contract where they don’t get access to adequate sick pay if they go off sick. And I speak to people regularly who I think need to rest more and longer, but who tell me they’re not able to because of the way that their income will fall.

And so one way we can approach that is by improving our legislation in terms of sickness benefits and the way we approach that. At the moment, we’ve got a really horrendous system where the examinations for sickness benefits are contracted out to, I think it’s a French company who does these assessments. And it is like a commercial company with targets and things. It’s totally absurd. How can you approach the idea of deciding whether somebody’s too sick to work with a commercial target driven company who has nothing to do with healthcare? Do you know, it’s just staggers beggar’s belief, really. We need to change that. Absolutely. I think we need to try to get away from the idea the people who are on health benefits are in some way scrounging off the state or in some ways having an easy life.

Do you know, it’s not easy to live on sickness benefits. I don’t know why the tabloids think it is. Do you know it seems to me extraordinary too. And government studies themselves have found that only 1.7% of sickness benefits they looked into were discovered to be fraudulent. So 1.7%. And of those a full third of the ones that turned out to be fraudulent were in genuine error. We’re talking about tiny, tiny numbers of people who might be construed as trying to cheat the system. The overwhelmingly massive majority of people on any kind of sickness benefits are in need of them, absolutely in need of them. And you know, it’s not about personal scrounging or personal benefits. It’s about what kind of society we want to live in. Do you know it’s about, do we want to live in a society where people are made destitute because of the random arrival of an illness in their lives?

Of course we don’t. And I think that we need to make that much, much more prominent in our public discourse that sickness benefits are not about the individual, they’re about the society that we want to build. And do you want to live in the kind of society where people end up completely destitute and impoverished because of what’s essentially a misfortune? There was a lovely summary of that of the inception of the welfare state put together by a sociologist called T. H. Marshall. He described the NHS and Bevan’s Reforms in the 1940’s as essentially being there to institute a safety net so the community could pay for the misfortune of an individual because any of us might become ill at any moment and be unable to work. And so we need to build a society and a safety net.

That means we all pay a bit into a system so that we can draw from it if we have the misfortune of needing to draw from it. I do think we need a reorientation of the rhetoric around that to remind people it’s not just about the individuals, there’s hardly any fraud or gaming the system, and that you have to act as if you might become ill at any point. All of us have to act and think as if we might become ill at any point, because we can. And then we’ll build a much better system which has got a real supportive safety net for everyone.

Natasha: In his book, Dr. Francis dedicated a whole chapter to reimagining or re-writing your story. I asked him how we can apply this to living with a long-term condition that can’t be fixed?

Gavin: Well, this was a chapter I wanted to put in to talk about the power of attitude and of the mind. And it’s dangerous territory because I would never like anybody to infer from anything I’ve written that I think recovery can be put down to simply a matter of attitude. That’s absolutely not what I have written anywhere. But all the same, I’m fascinated by how our understanding of illness and the attitudes we take to illness have an unbelievably powerful hold over our own feelings and over our own sense of recovery.

So a good example of that is the incredible, and shown again and again, power of placebos. So we know that placebos work very well. We know that red pills are better for acting as stimulants and painkillers. We know that blue and green pills seem to work better as sedatives and relaxants, even when they’re just sugar pills. We know that capsule pills work better than tablet pills. And we haven’t really got a good explanation of why this is the case, but tells us something about the power of the mind.

I really enjoy reading the books of a neurologist called Suzanne O’Sullivan, who deals largely with what are called functional illnesses. And she has campaigned for a long time against the idea of functional illnesses being perceived as, in some way, being problems of mental health. She says these have nothing to do with mental health problems. It’s not a psychiatric problem. A functional problem is just as debilitating as a physical problem.

But she’s shown examples of patients she’s known over the years who’ve, for example, experienced paralysis of the leg, but when they’ve had repeated scans and even surgeries, nothing can be found wrong with the nerve that goes from the spine to the leg. And it’s gradually become apparent that the patient had an understanding of anatomy, which meant the patient believed that a slipped disc, say, was cutting the nerve to the leg. And that was where the paralysis came from.

So it’s amazing if you think about that. And that’s amazing, it means that the power of the mind in terms of its expectation has managed to cause a problem so severe that somebody couldn’t walk. And that’s an understanding and an expectation of the body rather than a reality of the body, when you look down through a microscope or whether you look down through an MRI scan. And what it means for a neurologist like O’Sullivan is that actually the possibilities for treatment can be therefore much more optimistic. She’s not in any way saying that this paralysis is going to be easy to overcome because it’s all unconscious. It’s not a conscious thing.

What she’s saying is that if the nerve had been cut, chances of improvement would be very, very poor, very low. It would be unlikely to improve that paralysis. But with this kind of starting point that a paralysis has arisen through beliefs and expectations, there is a chance of improvement by retraining the mind and by relearning what the capacities might possibly be. And that, to me, seems a really, really interesting example of how sometimes our beliefs and our expectations about the body can make us ill, but our beliefs and expectations about the body can also help us to become well.

And so in that short chapter, what I was trying to do was explore different ways in which we can rethink some of the stories in which not only we become unwell, but also rethink some of the stories about how we might become better again. For example, I’ve got many patients over the years who’ve come to me and said to me, “I’m depressed,” but they say, “I’ve got that depression.” And the use of words itself is really interesting, I’ve got depression. And that use of words can sometimes trap people into thinking that there isn’t any hope, that they aren’t going to be able to overcome their problems with low mood.

And in that sort of situation, I’ve often got to guide the patient back towards a more hopeful perspective, which instead of saying, I’ve got that depression, it’s more like, I am depressed, or I feel depressed. That saying I feel depressed rather than I’ve got depression does open up the possibility for amelioration, for gentle improvement, for being guided back into a new kind of balance.

And that’s an example of the stories that we tell ourselves, either trapping us into something or allowing the possibility of moving on. And so sometimes we have to think carefully about what stories we tell ourselves and how they might be actually unconsciously locking us into things that we don’t need to be locked into.

Natasha: It does. And I feel like we can’t separate out those stories from the wider issues that we were talking about of lack of access to care and support. Because if people do not have access to care, do not have access to hope, do not have access to the support that they need, it’s very hard to tell yourself another story, especially if you’ve only seen decline. The last few episodes of my podcast have been with an amazing occupational therapist, and we were talking about pacing and starting to slowly make changes, no matter where you are with your chronic illness.

And one of the things after I had my first session with her, I was almost angry because I had felt that so many of the things that she had told me about how to almost reconceptualise and think about things in my life, if I had been told that in the very early days of being diagnosed, I think my entire trajectory would’ve been different because I would have had a different way of thinking about it and understanding it.

But also, I know just personally, things got really, really bad for me because I didn’t have appropriate care. And as I got worse, I became more scared, more hopeless, and it became this vicious cycle that getting out of it has taken a really, really long time. And that’s partly why I’m doing this podcast. And it’s a really difficult thing to balance because so many of these stories simply come because people aren’t given adequate access. I keep saying adequate, but in my head it should be exemplary and excellent. But people aren’t given the care and the support that they need for those stories. Does that make sense?

Gavin: Yeah, it does make sense. And there’s an interesting facet to this discussion, which I’d be curious to know what your occupational therapist thinks of, which is something that I am increasingly aware of the longer I’ve been practicing medicine, which is that when I started out in medical school, I would have an idea that for every condition, there was a certain way that we had to approach it. So there was a formula almost that once you got the diagnosis, right, then this is what you say to the patient. This is what you prescribe, whether it be physiotherapy or occupational therapy or medications. And then the patient will get better.

The longer I’ve been going in medicine, I realised that a huge part of the skill of being a good OT or a good physio or a good doctor is gauging what kind of patient you’ve got in front of you, what kind of thing do they need to hear? What do they want to hear? What are they capable of hearing? So just as I’ve got some patients who see me purely as a kind of guardian of scientific knowledge, I’ve got others who see me as just a conduit to specialists. I’ve got others who see me as an arm around the shoulder and a gentle chat. I’ve got others who see me as a kind of collaborative partner. And if you try and be a sort of guardian of scientific knowledge to somebody who wants an arm around the shoulder, you’re going to be the wrong kind of doctor and vice versa.

When I hear about consultations that have gone really, really wrong, in the past, I’ve occasionally been tempted to think, well, that’s been just an incompetent clinician. They haven’t been appropriately sensitive. And increasingly when I hear some of these stories now, I think, actually, maybe they behaved in a way that would’ve worked for one patient or maybe worked for the patient that they saw before them in the clinic, but it didn’t work at all for this patient. And so what they’ve failed in is adequately gauging what kind of consultation this needs to be in order to be effective.

And there are some rubbish doctors and nurses out there, but my experience is, most of them are really highly committed professional people trying their best in a resource-limited system. And they are usually trying their best, but they may often, and regularly I must do this, misjudge the way to approach a particular consultation, which is tragic as you’ve just outlined. If somebody gets set off on slightly the wrong trajectory right at the beginning, it can colour their experience for months or years even.

And so if I’m allowed a fourth wave of the magic wand, I would introduce into medical and nursing training much more of this idea that a big part of good consultation skills is trying to gauge what kind of patient you’ve got in front of you and what kind of approach is going to be most helpful for them. Because I certainly think that the really effective nurses, the really effective doctors do this subconsciously or implicitly, and it would be great to teach it more, as an aspect of medical care.

Natasha: If you live with a long term condition and listening to this episode has given you a bit of a spark to think about reconceptualising what recovery might look like for you, you might be wondering where on earth you even begin.

I asked Dr Francis for his recommendations…

Gavin: I’ve tried to distill an awful lot of different kinds of approaches to advice into this book, which is, I say pretty short. If I was to distill even that down, I would distill it to the last two or three pages of the book, and if I was to distill that even further down to three or four bullet points, I would say the first thing is to pay attention to the environment in which you’re attempting to recover, and try to make it the best you can to optimise your environment and everything that’s around you.

The second thing would be to think about health. Re conceptualise, or try to find a way to imagine health much more as a balance, than some kind of extreme, because none of us are getting any younger. None of us are going to arrive at a state whereby we approach some sort of magnificent sunny uplands of health as described by the World Health Organisation in that 1940s founding statement. We’re always between different kinds of states.

The next thing I would say is that the body is always changing all the time, and where there’s change, there’s definitely hope. Sometimes people get stuck in a perspective of themselves and their body that’s very static. They think that everything’s slowed down and is stuck in the mud. But your body is ceaselessly changing. All the cells of it are turning over. They’re changing all the … Even the calcium in your bones is swapping out for other calcium over the course of your life. You’re not the same person as you were 10 years ago. In that vision of the body is dynamic. There’s always some kind of hope.

Lastly, I would say that it’s much more important to set achievable goals and stick to them, and don’t worry too much about comparing with others. Comparisons can be so frustrating, and can be the death of us really, that we end up saying, “Oh well, so and so got better from this in only six months, and why am I still struggling with it at nine months?” But comparisons are just not helpful, because everybody is different. Set achievable goals. Little and often. Every day. Don’t look too much to extremes. Just think of everything as a balance. Think about your environment, and don’t lose hope. Don’t lose hope.

Natasha: As I mentioned at the beginning of this episode, I’ve spent a lot of time thinking about what “recovery” can look like for me.

And ultimately, I’ve realised, it’s not finding the complete absence of ill-health. But it’s about finding ways to understand my body, and live as well as I can with my illnesses.

On reflection, I think the biggest changes that occurred over the years have come down to having the support to be able to learn how to better manage my health. Only when I had that support was I able to recontextualise my story, because I was seeing positive changes, which then gave me more hope and belief.

It’s a challenging cycle, and I know I’m one of the lucky ones. It’s a big reason why I’m working on this podcast because there’s so much information out there that doesn’t get to patients. I’d highly recommend my movement series and my pacing series as great places to start thinking about teeny tiny steps that might help.

Thank you so much to Dr Gavin Francis for taking the time to chat to me. I’d highly recommend reading his book, it’ll definitely give you some food for thought. I’ll link it in the show notes if you’re interested in buying and reading it for yourself. If you struggle with reading, I have a whole episode on how to read more with chronic illness, which I’ll link in the show notes.

Thanks again to our episode sponsor, Passenger Assistance App by Transreport. To book your assistance by app when travelling by train in the UK, you can download the Passenger Assistance app on iOS and Android.

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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Next episode we’ll be exploring the bane of my existence…brain fog!

Ta ta for now!

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