The problem with “self-management”

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 asking… What actually is self-management? 

Improvements in healthcare have meant that more and more people are living with multiple chronic conditions for longer periods of time. With this shift, chronic illness is now a major focus of health care. 

At the same time, we’ve seen a move away from the traditional patient-clinician relationship, towards a greater emphasis on patients learning to manage their own conditions and having more of an input in their treatment. 

On paper this sounds great but the reality is that many people with long-term conditions feel unsupported, neglected and abandoned, left to deal with the weight of their conditions on their own.       

I live with conditions that primarily require “self-management”. By that I mean they have limited “medical” treatment options in terms of medications. It doesn’t help that I tend to react very badly to a lot of them anyway, but even so, it means that most of my interventions are based on long-term things that are very much centred around actions I have to take in my own life. 

It’s worth mentioning that this is primarily due to the fact that I have conditions that are underfunded and under researched, and so these more “lifestyle” options are some of the only things on the table. Seeing emerging areas of research looking at actual biological mechanisms and the potential this has for treatment in the future is something that I am following with great interest. 

“Self-management” is a big focus of this podcast because there are so many skills that I’ve had to learn in order to “manage” my condition, and I felt like I was never given the tools to be able to do that from the medical professionals who were supposed to help me. My experience was very much “here are a few stock things to try” and then if they didn’t work I was left on my own. 

So, how does this all look in practice? Well, I have to think a lot about pacing – how I literally structure my day and the activities I do in order to better manage my energy. I have to think about strengthening and management of acute and long-term injuries, I have to think about what I eat (both in terms of nutrition, but also in terms of how that impacts my energy and other symptoms), and I have to think about how much work I can do on any given day, whether I can be social, and how much rest I need. 

And that’s just the start of it, from baths and heating pads and massage oils and fascia balls, to rest, relaxation and learning to meditate – the very structure of my life is built around symptom management and trying to minimise as much unnecessary exacerbation and unnecessary suffering as possible, so I can feel as good as possible, even with my challenging conditions.

The thing is, there seems to be a lack of clarity around what self-management actually is, and as we’ll explore throughout this episode, this uncertainty is a big part of the problem.  

I’m delighted to be joined by Jackie Walumbe who’s a physiotherapist working for the NHS in England. 

Jackie works with people who are in hospital due to long term, persistent or chronic pain and her aim is to help people get to a place where they’re able to go home but perhaps with a bit more support than when they went into hospital. 

Jackie is also working on her PhD which focuses on the self-management of chronic pain. And she’s the co-chair of the Physiotherapy Pain Association. 

So, to start, what does self-management mean to Jackie… 

Jackie: It’s really difficult for me. Can I instead say what I used to think self-management is? So when I started working as a physiotherapist, we only started talking about self-management a little bit later into my career, so I don’t remember learning about it. I just remember I used to work in a musculoskeletal injuries, back pain, that kind of service, and our letters that we wrote to the GP who was our referrer would say, “The patient is successfully self-managing. We are discharging them back to your care,” and so I just assumed that self management meant that they were all good, and I don’t think I interrogated it any further than that. Then when I worked in a more specialist setting, which is my current area of self management, we used that term all the time prolifically, and I started to try and understand better what we meant by self management.

So I’ll give you a good example. We might be in a meeting with the doctors and clinical psychologists and nurses in a meeting together, and the way we would speak about self-management then would be as not what the medics do. So it was very much someone would say, “Are they suitable for self management?” And that would really be shorthand for anything that the psychologists, the physios and the nurses did, which obviously, as you can appreciate, is a huge bunch of things. And then we also talk about a self management approach and so I wanted to know, “What is a self management approach?” So I asked a couple of colleagues just in passing and I got so many different answers, and that really is what led me to do my PhD, because I thought, “This feels like a really important thing and I don’t know what we’re talking about. So what are we talking about?” So that’s my cheat answer, but I certainly have a lot more insight and thoughts about it that we can talk about if that would be helpful.

Natasha: Yeah, absolutely. What were some of the answers that your colleagues gave you initially and what was so different about them?

Jackie: So I think the biggest one was the shock of, “Why would you even ask such a question?” So it seems to be so self-evident that if I say, “We’re talking about self-management. Surely we all agree?” and then when I pushed a little bit, it would be really in the language of cognitive behavioural therapy, learning skills and strategies to live with a chronic illness, in this case, chronic pain. But also, it seemed to include or exclude use of medications or things like rest. So some people would say, “That’s not a self-management strategy,” but others would say, “Of course that’s a self management strategy.” Things like activity management or even seeking healthcare…

So some colleagues would say, “Well, they’re doing it, so that must be part of the approach,” whereas some people felt quite strongly that seeking additional healthcare was not aligned with self-management as an approach. So I think I was quite struck by how much confusion there was. But despite that, and even having done my PhD and talked about it for four years, still now, when I speak to my colleagues, they’ll still say, “Self-management,” as a shorthand for any number of things that could be going on. What was clear was self-management from this population was not literally what people living with pain were doing. That wasn’t in the equation. It was more what we, as professionals, told or advised or encouraged our patients to do.

Natasha: As we heard from Jackie, there is such a lack of clarity around what self-management actually is. We’ll get into this in more detail shortly, but first I wanted to hear more about Jackie’s research…

Jackie: My PhD research was guided by the question, basically thinking about how do people who are excluded or who have dropped out of specialist pain services, how do they do self-management? And additionally, I was interested to understand how they were or could be better supported in policy and in practice. So this was quite a big overarching idea that I was curious about and I used social science methods and interdisciplinary. So because I’m a physiotherapist, I’m looking at stuff that involves psychologists, medics, et cetera, et cetera. I had quite a broad approach to how I would answer the question. So, because place is important, so in the UK, you get access to services pretty much depending on where you live. So I selected an area of the country that was pretty representative of most other areas and decided to look at self-management in that local area.

So I first started by speaking to healthcare professionals and managers and commissioners about their understanding and experience of self-management and I just did that through interviews and that involved general practitioners, social prescribers, pharmacists, ambulance, or paramedic staff, psychologists, occupational therapists, physiotherapists, pain specialists. I think I’ve covered the whole bunch of them and that was what I’d call phase one. I then took that information and spoke to patients. Technically they weren’t patients of the service, because I was interested in how people are excluded so they were people who were living with pain who may or may or have not been patients and I spent some time, so rather than a single interview, we did an interview and then we caught up over a six-month period. Because of COVID that was not face to face that was through telephone calls or video calls and they showed me around their homes mostly so that I could get a better understanding of what real life might actually look like and what self-management was from a real perspective rather than a theoretical perspective.

And then the final phase really, which has happened throughout is I looked at the academic literature and I looked at the policy literature to understand how those areas were talking about self-management so the start was self-management of chronic illness more broadly and my findings, I would have to say, is that self-management of chronic illness more broadly is pretty well defined. So when we talk about illness more broadly, you have no definitions that are used but when I looked at the literature for pain, it was a complete mismatch. So the meanings were varied. The meanings were assumed. There was lots of assumptions going on and therefore, when I then looked at what is self-management according to my case study, I came up with quite a lot, that there’s a lot of different versions of self-management about.

Natasha: It’s easy to see why there’s such confusion around the term self-management. 

If clinicians can’t decide what it means amongst themselves, you can’t help but wonder how this translates to the care that patients are receiving. I asked Jackie to explain what some of the more general definitions of self-management are in the chronic illness space… 

Jackie: They tend to be based on a team at Stanford, in the United States, who developed what’s called the Chronic Disease Self-Management Program. That was very much a lay-led, so led by people with the illness in question, community embedded, but very protocolized set of skills that they would… It would be based on psychoeducation, and learning a very specific set of skills. Some of which we’re all very familiar with around problem solving or improving self-efficacy. So, that is Kate Lorig and her team at Stanford. It’s very well defined in the literature. It’s very well embedded, it’s because it’s part of the wider health system. So, it’s not a standalone thing. It’s something that comes along with case managers, they’re part of the health system, but they help patients navigate the whole system. So, the Chronic Disease Self-Management Program was part of a wider program of chronic illness management.

Now, that definition sometimes crops up in the pain management literature, but not always. From a policy perspective, what I think happened, and don’t quote me 100% on this, is that in the early 2000s, some of our politicians went over to the states and thought, this is brilliant. They went to Kaiser Permanente, which is one of their health management organisations, and they brought that model over to the UK. But they did not modify it, in terms of context. Now, you might be familiar with the Expert Patient Program, and that was what was based on the Chronic Disease Self-Management Program, which was then adapted to be the Arthritis Self-Management Program. So, insert name of illness, self-management program, which followed the same principles. In the UK, it became the Expert Patient Program, but that was again, not very well embedded within the health system.

So, GP practitioners or different services weren’t very connected to it. I think at the same time, the idea of pain as a long term condition was becoming more accepted, and colleagues, for example, at Guys & St. Thomas’s Hospital in London, the Input Pain Program had developed this multidisciplinary pain management program, based on cognitive behavioural therapy and multimodal rehabilitation for pain. Somewhere along the line, those two seem to have blended into each other, where the language is now inter-spaced or it’s interchangeable for a lot of professionals. But I think by understanding the history, these were very separate ideas, but then they merged. I think they have a life of their own now, because globally self-management in chronic pain, it’s accepted as a given, but not that it has all these different meanings, configurations.

Natasha: Something I hear a lot from people living with chronic illness is that being told to self-manage, often without appropriate care and support, can make them feel like they’re being cast aside, ignored, and responsible for bearing the full burden of their illness.

For many, it can cause feelings of frustration and desperation, as well as guilt about being unable to cope (or and with very heavy scare-quotes here) “properly manage” the weight of juggling life, relationships and work with a complex and challenging medical condition. 

Jackie says because there’s no consensus around what self-management actually means, her research found that patients are left feeling abandoned by “the system”…

Jackie: Because of all this confusion about how we use the term, the result is friction, so quite a significant amount of friction. For example, a patient who has waited two years or so to see a specialist pain service who is then told at their first appointment that they’re being offered self-management. Those patients felt really, “Well, what’s the point? I’m already self-managing my condition. What was the point in me waiting two years to speak to you?”

So I think that seems to cause quite a lot of friction, irritation. The lack of consensus was also really evident in the same service if you spoke to different professionals. So whoever had seen them first would have offered, for example, a medic or a pain consultant may have said, “After all these investigations, I think you would find a self-management approach helpful.”

So they think whatever they think, who knows, then they’d pass that person on to someone else in their team. And for example, the nurses would say, “Well, self-management is …” I’d have to say that the nurses have the most expansive understanding of self-management. So they would talk about sleep. They would talk about relationships. They would talk about finance. They were really quite open to pretty much all sorts of things that can contribute.

The next group of professionals, which traditionally or more commonly in the UK or in England, anyway, pain management programs are run mostly by psychologists and physiotherapists. Sometimes you also have occupational therapists and nurses and medics. But on the whole, it’s usually a combined physical and psychological approach.

Now, psychologists and physios working within pain management programs used self-management in an entirely different way. So they were more aligned with what I understood to be self-management when I first started on this journey, and that was this huge multimodal intervention that included psychological therapies of different ilks. It also included support for building up activity, movement, rest, sleep. It was a really … It’s a catchall phrase for quite a complex set of things.

Now, when the patients were being asked to consider this type of treatment, they were just being given that one word, self-management, but in reality, they were being exposed to a lot of other information.

So I think it’s not what it says on the tin. You weren’t really been given the option of what it sounds like. So it sounds really logical, self-management, managing yourself or of the self. And so what I also then seemed to find was that miscommunication led to patients turning down the service. So they felt, “I don’t think that would be helpful. I’m opting out.” So they would drop out or they would opt out of services that may be helpful. Big headline finding for me was that misunderstandings happened when we used this shorthand.

Natasha: It’s really worrying, but not at all surprising, to hear that a lack of clarity around this term is actually causing people to miss out on care that might be helpful to them! 

I guess it sits alongside the feeling that many people have that self-management is maybe a bit of a cost saving exercise – a way for a stretched healthcare system to save time and money by putting the sole responsibility of care on the patient. 

It reminds me of a conversation I had a few years ago with a lovely NHS physiotherapist working in a hypermobility unit. 

I’m very fortunate to be able to self-fund my care, but my consultant recommended that I be referred to an NHS physio for some hydrotherapy as she thought I would benefit from it. 

After a long wait, I had my first session to meet the physio. She was understanding and knowledgeable, and she told me that I could probably get around 6 sessions in total. When I asked her about how this works for patients with a long-term condition that changes constantly, she told me: “our job is to empower you to manage your health”. 

But the thing is, I know for a fact that I wouldn’t be where I am today, and I wouldn’t have the tools to be able to manage my condition, if I didn’t have someone who was constantly on my side. Someone working with me to get stronger, but also to adapt things for me based on my pain, injuries, fatigue and goals. 

Not only have all of these things changed dramatically over the years, 6 sessions also wouldn’t take into account the psychological support that I needed to feel safe enough in my body, which has also taken years of work with my PT alongside the physical work we do. 

And I don’t blame the physio at all. It’s not her fault that’s all she can offer. But it was incredibly frustrating to hear for all the patients who are struggling with their bodies to an extent that could be mitigated if they were given the right ongoing care. 

So it’s easy to see why having a handful of sessions on the NHS and then being left to manage for the next however many years by yourself feels like you’re just being abandoned. 

And Jackie says these feelings came up in her research too…

Jackie: One of the other storylines that came from the literature was this idea that self-management was about cost containment, so that in a world where people have more and more long-term conditions, we need to manage the costs better. And if self-management is safe, effective, not harmful, that’s the thing we need to give people. So I’m not surprised at all that people are experiencing care as being cut off and being pushed back onto the patient. In defence of healthcare professionals, I don’t necessarily think that they’re deliberately thinking that, but that is certainly the impact of having programs of work that are not embedded within the wider health system. So one of the things that you’ve just spoken about that I picked up on, and that was very much my research participants felt very much the same thing, where they had access to healthcare professionals, for example, a GP or a rheumatologist or someone, but it was not sufficient to allow them to know what to do in the absence of those healthcare professionals.

So they would have a small amount of skills that they’d picked up on, or ideas or tips, but then when they’d go out into the world, they’d encounter a different context. Maybe they went for a wedding, and that hadn’t happened before they saw the healthcare professional. And so what a few of my participants did was they did something that I hadn’t considered, but it’s obviously very logical, is they built a wider network that excluded or that was separate from healthcare professionals. I would say the formal pain or health services, so they would, within their own personal networks, identify for example a personal trainer, or someone who was sympathetic to the fact that they had some limitations and was happy to work with them.

On the flip side, there is also this issue with our colleagues who are working in the leisure centres, for example, in social prescribing, where they probably hold ideas about pain and illness that are very biomedical. And so if someone with pain or something goes to see them, they might get frightened about giving the wrong advice and maybe exacerbating the condition. So there is this divide, which is, I suppose it’s a knowledge gap on either side, where there’s just not as much recognition of what else people can do to live with their conditions. Maybe regular personal training, but in places where people don’t have the financial resources to do that, there are a few very selected areas in the country where the voluntary sector started to build up, to provide community-driven, very grassroots-led initiatives that might include all the things that you’ve talked about.

It might be gardening, but with someone who understands pacing or activity management, or it might be looking at what the community needs and then empowering, I hate that word, but we can come back to that. But giving people the tools and the confidence they need to engage more in things that are not traditionally health services, but are extremely valuable to people.

Natasha:

Yeah, giving people the opportunity to engage back with things that are important to them in their lives.

Jackie: Yeah, absolutely, because I think that from my physio hat, that is absolutely what we talk about. If we’re talking the talk, we set goals, we think about values, but I don’t think that we think far enough about in somebody’s day-to-day life, how are they going to keep making progress with that goal? How are they going to get support to achieve that goal? And in terms of general behaviour change, you would never say to someone, “You should stop smoking. Off you go.” If that person is having trouble stopping smoking, you’d give them resources or point them in the direction of something they’d be checked on. Or if somebody said, “I would like to lose weight or gain weight,” they tend to be given additional support.

So I wonder if that kind of model could be expanded, so that when we say self-management, I think is very individualistic. It focuses on an individual, but it doesn’t account for the resources that individual has or the capacity that they have to mobilise their resources. Because if you’re having a bad day and your brain’s not functioning and you’re in pain, you might not be able to do the things, to go for your PT appointment and things like that.

Natasha: A lot of people feel blamed when they aren’t able to “manage”, but a big part of that is like you said, the resources aren’t there to be able to support them to manage in the first place. When it is this idea of self-management, it inherently feels like it’s something that you have to do. That’s something that I come across a lot as a perfectionist, that as soon as I start having a bit more trouble with something, I’m like, “What did I do wrong?” Or, “What can I optimise? What can I do for all of this?” And again, I have a lot of support around me and resources to be able to play around with that, but at the same time, it is this wider idea that people aren’t given the medication that they need or support to find the right level of medication for them. They’re not given just all of these wider things, which is again, as you said, I don’t blame the individual people working within the system here. It also comes down to policy and how we think about what it means to live with a long-term condition.

Jackie: Yeah, absolutely. I think I have a background in public health, so I did a postgraduate degree focusing on global public health, and I think the value of that insight was around recognising that illness does not just come from pathogens or injuries. It can be a result of the wider things that are happening in society. For example, Michael Marmot’s work, it’s very much around what they call the social determinants of health. So sometimes, you can do as much as you can to be healthy, but if you live next to a busy road in less than ideal conditions that are cramped, if you are not financially secure despite having three or four jobs, all of these things contribute to your experience of healthcare. So if you are constantly receiving information from healthcare professionals all the time, but your health literacy is not that great, that’s just going into the ether.

If you are experiencing racism all the time, that makes you have lots of stress, and if you are having issues because of your gender identity and that’s creating lots of issues. All of these things have pathways that can lead to illness. But when we think then about illness itself, we tend to focus on individual factors. So for me, casting the eyes wider around the social determinants of health, and even more than that. That is still focused on how an individual and their environment interacts, but if you then look at the policies that dictate how our services are organised and run, that also makes it very clear that the way pain management services, for example, have been shaped and how they have been evaluated is based on the fact that we have some very strange policies around pain.

So for my findings, there really is no comprehensive pain policy in England. There is much more of a focus on that in Scotland, but in England, pain doesn’t have its own space. It tends to fall under a whole bunch of other different conditions. Therefore, it’s no wonder that our services are so disparate. The National Pain Audit that was carried out by the British Pain Society, this is almost 10 years ago now, showed that. It showed it depends where you live, you might have a multidisciplinary pain service like ours, where you get to see everybody and you get offered a whole bunch of different initiatives, or there’s a lone clinician working in rural -shire, not sure which shire, but that person might only have recourse to medicines and that’s all you’ll get offered, et cetera, et cetera.

So I think those three levels, so from a sociology perspective, we talk about the macro, the policy levels, the big things. The economic crash, the COVID, the things that determine what our lives in our societies look like. Then the meso, which is distilled down to organisations like the NHS, how do they interpret what’s going on to determine how you can access services and what services are available? That might include, to some extent, healthcare professional’s attitudes, beliefs, what evidence, the role of evidence, whose knowledge, which knowledge. And so by the time you think about the individual living with a condition or with illness, they’re just faced with so many different things that are contributing to what they can and can’t do, that I’m not sure that self-management is a valid way of talking about all those things, because it reduces complexity to something that seems very simple. I know people are very passionate about it, so I’m not saying there’s anything wrong with self-management. I just think we have to be clearer as to what it is and who it’s available for.

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Natasha: Now, I talk about self-management a lot and I guess to me, self-management is thinking about what I need to do and adjust in my life to be able to live with my health conditions. 

It reminds me of a chat I had with my GP when I was having a really tough time mentally a few years ago. 

I said to him that I wished there was somewhere I could go to for a week to just be looked after, where I don’t have to think about managing my health as much as I do. And he said to me that as nice as that would be, I have conditions that are very dependent on what I do. And whilst it’s frustrating, it is true, to an extent.

As I said in the intro, I happen to live with conditions that are severely under researched, which means that perhaps in the future there’ll be more medical interventions that are actually useful. 

But it’s worth mentioning that acknowledging that I do have to spend a huge amount of time, money and brain space on managing my conditions, doesn’t mean that it exists within a vacuum. It doesn’t mean that patients don’t need ongoing support, be that for medication, physiotherapy, or even social things. It doesn’t mean that the wider environment and life experiences don’t all play a role too. 

And it got me thinking… is there a better term for self-management? And what needs to change to improve a system that’s leaving so many people feeling left behind? 

Jackie: … in terms of an individual living their lives with a condition, a lot of the time that involves having appointments with healthcare professionals, non-healthcare professionals, taking medications, adjusting those medications, having procedures, not having procedures. I think that complexity, let’s think about how it’s vast, it’s entangled, and by naming it, at least you can start to negotiate it, versus if we quickly go to the, for example, if I were to write a policy and I said, self-management is the cornerstone of this policy, what does that mean? Which bit? The literature shows, I think I’m on to 46 papers and about four of them have the same understanding of self management. There are so many different versions of it.

I don’t know, in an ideal world, do we just repurpose it and say, you can’t make people not use a term, but perhaps if someone says that the question you might ask them is, I don’t know, “Could I just pause you there and ask, what do you mean by self management? I’m happy to work with you, I’d just like to understand it a bit better.” What we call things matters. For example, I think there’s already a lot of care out there for people with pain, for example. If you had arthritis type of pain, you might be under the care of a rheumatology service and under a rheumatology service that might be all sorts of things including education and how to care for your joints, about managing your diet and looking at maintaining a healthy weight. There’s already, you see how by unpacking it, I suddenly start to name more and more things.

When it comes to pain, we can also disaggregate what we do instead of saying the pain clinic. You go well, right, I went to the pain clinic and I spoke to an advanced physiotherapy practitioner where we identified these things that were problematic for me. Therefore, number one, I had to have another appointment with the pain consultant to discuss any procedures that would be acceptable to me. I have signed on to one of their pain management rehabilitation programs to focus on building up psychological skills, such as my coping strategies when it comes to distress.

I’ve also picked out ways to build up my physical activity, because it’s really important for me to be able to go up four sets of stairs when I’m at home because I live on a two level flat. Just by describing, I have expanded what is available for people. And what I touched on before we could then go further and say, the trouble I have with those stairs is I’m really scared that if I fall I’ll be on own at home and my family lives in a different town or a city, so it might be that we might think of technology. Is there anything such as having my phone with me that would build up my confidence in doing that? Do I need to speak to an occupational therapist to help me identify what we can do? Actually, I’m really weak because I’ve not done that for a long time. I think four sets of stairs would be quite hard, or four steps would be really hard so I need to build up some strength. I hate the gym, so how am I…

Do you see what I mean? The conversation can build on a conversation rather than shutting it down. I think, absolutely, we can continue to use the word self-management, but I just think people need to say what they mean by self-management so that we minimise confusion. And that would be the recommendation, I think for me, from my own practice is if someone says self-management, I’m very annoying now, I just go, “What do you mean?”

Natasha: For me, growing up surrounded by medical professionals, so much of my care was very much “do as I say” with little regard for my feelings or thoughts about what I wanted or felt I needed. 

I’m pleased to say over the years, especially more recently, this has started to shift and I am hearing from some people that what they need is more central in their treatment. 

Jackie agrees that these conversations are happening more often, but she says there’s still a long way to go…

Jackie: I think the issue we have is many healthcare professionals are trained, or were trained under a biomedical model. They’re really focusing on if it hurts, what’s wrong with it, let’s fix it. There has not always been the acknowledgement of, sometimes we are not able to fix it and make it as it was before. Therefore, people are living messy lives, and therefore healthcare has to accommodate for messy lives. I do believe that is changing. That is in the curricular for all healthcare professionals, including medicine, to basically say that health is not just about what’s happening biologically or physiologically. It’s also what’s happening in the social world. It’s also what’s happening in people’s psyche, the psychology, and everything in between. The issue we have, is we have a legacy of professionals who have been trained to look for simplicity, and working with simplicity is easier than working with complexity.

When I was younger, it was easier for me to see a knee as a knee problem, as opposed to a knee attached to a human being who was going to ask me lots of questions and complex things that I couldn’t address. I didn’t have the skills to address, for example. From a policy perspective, there’s also been a shift. We also have initiatives like personalised care, which is encouraging all healthcare professionals to do some of the things we’re talking about, really attend to and listen to people’s concerns, and see what they can do to work with that. I know general practice and primary care is really geared to trying to build up on that. They have their own issues with time, but certainly the ethos of having people in their messy, complicated lives, joining a healthcare system that is also messy and complicated, and finding a way to navigate it through.

I do think that many places are starting to understand that better. In terms of pain care, that is something that I think we will grapple with for a long time, because every part of the health system takes responsibility for pain, but probably not in the specialised way, that for example, in my role, that I were to do, my hope is that this is changing, but that is a very slow system, change, values. It’s a huge, big difference. But it also is quite satisfying to go to work and feel that, actually I’ve contributed in moving something and enriching someone’s life, rather than feeling stuck and, Ugh, frustrated in all those kind of words.

It’s a better way to practice to just look at people as human beings. And I know there’s a recent paper that’s been published by one of my colleagues, and she’s doing her PhD in Queensland, and she’s talked about human-centred practices. Rather than focusing on bio or psycho or social, she’s like, there’s more human-centred approaches that just allows you to switch your lens a little bit. The flip side of that is we don’t live in a vacuum. These ideas are also part of our patients’ lives. And so if patients hold a biomedical view, it’s going to be very difficult, for example, to come to see a physiotherapist who does a lot of talking, as opposed to what they might expect, which is I would say more use of their hands, or more, I want to say outdated, but I might get murdered by my colleagues.

We don’t just do one thing. We talk about physiotherapy as a profession that could offer a lot more, but when you think of physiotherapy as a technique or as a treatment, you get a little bit stuck. And so that mismatch between the expectations and the reality is always going to be a problem. But I think through language, we can start to unpack what it is we mean, and some of those disagreements, they might be become less and less.

Natasha: I love Jackie’s take on all of this but I keep coming back to the question: how do we start implementing some of these ideas in a healthcare system that is understaffed and underfunded…? 

Jackie: We need strong primary care. By that I mean, general practice by the people you see first, not me, not me in specialist tertiary services. Currently, we get quite a lot of investment, as far as I’m aware, and I think that we do need to strengthen primary care so that people early on in their illness journeys and in their communities are able to access help.

That doesn’t have to be complex before they’ve built up issues around trust and your emotional roller coaster where you’ve got that chronic illness. Perhaps when it’s early on, if we can strengthen primary care, I think that is a universal global health ambition, which is beyond me. But I certainly know that is a policy initiative.

The second thing is I think we can expand the workforce, so the healthcare workforce – busy, very, very busy, like people aren’t sitting twiddling their thumbs, but I think we have overlooked the capacity in our communities. Peer-to-peer support is what you do, I think is really fundamental to people understanding from someone who gets what they’re going through, what options there are available.

So rather than waiting your two years, someone listening to your podcast, for example might go, what! Hang on a minute, this is something I’m curious about. Let me go and explore. I think working with our voluntary sector, they understand things like social isolation and loneliness, for example, in older people or in different… If you’re a young mother and you are dealing with early pickups and things like that, it might be that your information comes, it’s better to come from the local library where you go to Monkey Music, or something like that.

So for me, I think expanding the idea of what health and social care is means we can do more in our communities and then we are only accessing healthcare at the point of need. And in terms of costs, I genuinely think if what we are doing is not working for people, it’s expensive because it’s not helpful, so people must just be going round and round in circles and up and down and not feeling very satisfied.

If ever there was such a thing as a cost neutral solution, it would be about inverting the pyramid of investment a little bit and doing more where people can access it closer to their homes so that when you do need specialist services, you’re not waiting three years for it. You are waiting an appropriate length of time to receive relevant care.

And when you are discharged, it’s not about right, we’ve cut you off for life. But there’s a safety net that you’re going out back into your community and there is things set up for you that you understand, that are relevant to you and they’re not just something I came up with on a Tuesday in my clinic.

I think that wider idea about health, I think is fundamental for all of us to think about because suddenly then there’s a lot more we can do. If it’s about self-fulfillment, it’s about doing meaningful work. If it’s about having relationships that are fulfilling. Suddenly it’s no longer, let’s just wait for the NHS. Let’s rethink and let’s reimagine for me, pain care.

Without being too technologically… It’s not fancy, fancy stuff. We are limited currently in the amount of types of medications that are available, that are safe for long term use. We are limited in the types of interventions and procedures. Therefore, we do have to be creative and maybe there’s someone out there who’s just doing some stuff that we could learn from, that I learn from my patients every day and it’s probably why I’m doing the work that I’ve done so far.

Natasha: I think what everything seems to come down to is we’re people, we’re humans, and if a doctor says, I don’t know, but I want to help you. If you’re walking out of an appointment and you’re feeling like someone was kind to you and someone listened to you, and that even if there isn’t a medication available, there might be something, as you said in the community. Something that can, that desire to recognise that you are a human and that you want to be able to live a life in whatever way is fulfilling to you.

I think even if just that intention is at the heart of everything, it would completely shift the relationship a lot of people have with their healthcare. I think that’s quite a powerful thing.

Jackie: Yeah, and I know it doesn’t sound very high tech and fancy, but I really do think that by opening conversations and being a little bit less rigid in our perspectives, I might hear if my patient is telling me, I do not buy that psychological stuff. If I hear that I can go, I’ve heard you. Let’s think together about what else could be available for you.

I recognise that there’s a lot of work involved in having an illness or a long-term condition with or without pain. There’s a lot of understanding work. There’s a lot of planning and processing, as well as the day-to-day life of just living. I think that is something we, as healthcare professionals, need to acknowledge. That there is a lot of wisdom in people who have been living with something for a long time.

My learning from the last four years has been, goodness me, people are completely inventing new ways of doing things by building their networks. By that, I mean, when they say it takes a village to raise a child, I think it takes a village to live with a chronic illness because you build your village around you.

It depends who you come across. If you need a vicar on that day, that’s what you need on that day. You don’t suddenly go, no, I’m more of a bakery kind of person. There’s days you go to the bakery. There’s days you go to the butchers. You might need to spend some time on your own, swimming or whatever.

So I think for me, the takeaway message is if we go back to the idea of self-management is if you can expand your idea of what is possible by expanding your relational network, I think that will enrich what you’re able to do about yourself and by learning from peers.

I mean, we’re catching up the healthcare professionals are behind you, learning from you. But I think that idea of a networked village is really key in that day-to-day living and thriving.

Natasha: One of the most challenging aspects of my work has been talking to people every week who have been failed by their medical professionals. Who are isolated and scared and ill. And the frustrating part of this, is that so much of it feels avoidable, if there were systems in place to help support people who are sick. 

And as we all know, this lack of care doesn’t just impact our health, it impacts every aspect of our lives, so I absolutely loved that final sentiment from Jackie.

Whilst there’s still a really long way to go, one of the highlights of my job has been talking to medical professionals who are working hard to change things, offering the care to their patients that is so different to what was on offer a decade ago. It gives me hope for the future. 

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