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Report transcript in: Lesley's story of living with pain
Please Report the Errrors?
OK,
but can I get you to introduce yourself?
OK, so I'm Lesley Colvin. I'm chair of pain Medicine in Dundee.
And I'm a pain consultant in the Tayside Pain Service.
Um, I worked as a pain consultant
in Scotland for more than 20 years now, actually,
um, and I've been involved
with the
co leading the Chronic Pain research group in Dundee.
And with the pre funding design and now carrying out and delivery of Cape
Thank you for the introduction.
So I'm wondering, why for you is this project important? So what?
Why are you doing this project and why is it important for
you,
but actually people that you support,
Um I suppose this project among
most of my kind of the the research that I'm interested
in it probably stems from my job as a clinician.
Um, where,
you know, I I see the impact that chronic pain has on people,
you know, enormous impact.
You know, it's not just that kind of feeling a bit sore,
but impact on every aspect of their life,
you know, And to me, one of the joys of being able to do research is to
try and understand why some people are more vulnerable to chronic pain
and to try and understand
how we might be able to manage it better.
So at the end of the day, we can improve things and,
you know, maybe maybe do out of a job in a few years time, but I suspect not.
But to me, that's that's a real challenge and kind of joy of doing research. Is that,
um, seeing patients in clinic and
thinking?
Actually,
maybe there's something that we can understand better
that we can improve things in the future.
Thank you for that. Um, a lot of people that shared their stories
talked about, um, the challenges they found finding the the right support.
So what more could be done to support people with chronic pain?
Well, I mean, first of all, you know, you say, Well,
we've got to structure our health care services and our social care
services to meet the needs of people with living with chronic pain.
So you think, Well, how many people is that? And actually,
in terms of understanding it scale,
how many people actually have chronic pain with unmet need?
There's not an easy way to do that currently,
and that's that's one of the just very recently funded projects.
So
if you can understand who has chronic pain and what their unmet need is,
that then allows you
to structure your health and social care services to
address provide services that are needed.
But I suppose the other thing is maybe taking a step back,
which is probably where Kate comes in, is
saying, Actually, we know that people with chronic pain have, you know,
they tend to come from areas of high deprivation,
you know? So, um,
the, you know, lower socio demographic groups.
So
is there something that we can change in terms of how we
structure our society and deliver care?
But actually we can start to think about prevention.
So that's that. You know,
I'm based in Dundee here.
It's a city where there's huge health, health and social care inequalities.
So how is it that we begin to understand the impact that those have from
early childhood in fact intergenerational
and then begin to structure our society both health and social care,
so that we can address that need? So there's two things. There's kind of
addressing the immediate need,
so
people that come and see me in clinic, What can I provide?
And acknowledging that there are limitations, There's waiting lists.
There's staff shortages,
but also looking forward, said. Actually, we're an ageing population,
so the number of people who are going to be living with chronic pain is going up.
How can we actually try and reduce that burden both a societal level,
but also an individual level?
Can I ask you, How does it make you feel?
Um, being someone that's passionate about supporting people,
living with chronic pain, knowing that there are limitations so professionally,
what does it feel like knowing that you you might not
have all the resources and
means to provide care?
Yeah, that's a good question, actually frustrating at times.
It is frustrating at times because, you know, within within our pain service.
You know, we've got a really good team and they're really motivated.
And there's absolutely no doubt that the last couple
of years has had a real significant impact on
um,
most pain consultants are also anaesthetist who were involved in, you know,
being in covid IC u day in, day out.
And
you know, there has been no recovery time
because as soon as the covid
and the first covid lockdown, and we kind of tried to get back on our feet,
what we were trying to do was, you know, reduce the waiting times.
And I think
one of the things that I find a bit frustrating is that
in terms of managing the patient group that referred to me who've got complex,
chronic pain,
we need a really good multidisciplinary team to deal with that.
But if the waiting time for each member of that team, you know,
I I see someone after they've waited for six months
and then they have to wait another few months.
It's really difficult to deliver
what you know they need at the right time.
Um, so that is frustrating.
But at the end of the day,
there's also huge satisfaction in doing doing the
best that you can with what you've got.
And can I ask you why you, um, chose pain as an area of to to to work within Like what?
What attracted you to
kind of this area?
Also an interesting question because, you know, as an anaesthetist,
you you kind of some immediate gratification.
You have the little syringe and the big syringe. And you know,
when things happen, they happen really quickly.
You have to respond really quickly, and I think,
and that was good fun. I like that. But one of the things that I missed was the kind of,
you know,
I kind of feel like a deeper relationship
with your patients where you're trying to understand.
You know how how that condition has affected them
and develop a strategy to help them manage it, which,
you know,
if you're doing just straightforward anaesthetics you don't get So
that's That's one of the things that really attracted me to
chronic pain
and some of my anaesthetic colleagues.
You know, that's absolutely what they don't want to do.
But there's a kind of a good cohort
of an
by training who are interested in that aspect of it.
And I think the other thing that I've always found interesting is
that I do have a kind of scientific inquiry in mind.
Um,
and I took three years out to actually have clinical medicine to do
a PhD to try and understand the mechanisms of neuropathic pain in particular.
Um,
so
you know, I've got that understanding of translational pain research
and that, to me has been really satisfying because you can then start to think Well,
actually, if this is the mechanism,
how can we develop new treatments?
Um, and one of my areas of interest is chemotherapy induced neuropathy.
And there's some potentially maybe some new treatments that we could
be looking at that might actually be able to help prevent developing
neuropathic pain during chemotherapy.
So that's that's exciting.
That sounds like a really important piece of work.
And I was really struck by
the idea,
um,
that you shared with me around having to look at the intergenerational,
the places and spaces people live within.
And
so the question I'm really interested
in is
there might be many people out there living with long term pain that
don't get to see somebody like you that has all of that understanding.
What would you say to other
health care professionals and doctors
when
you know when supporting people,
um, with pain?
Because I think it's quite a
unique position that you probably find yourself in.
Um,
so what advice would you give other
professionals about supporting individuals manage pain?
I mean, I I think, you know,
intervene early with the best evidence based management that you can.
So
in Scotland,
we've got the Scottish equivalent of Nice,
which is a sign Scottish intercollegiate guideline network.
So
I chaired the design guideline.
The first sign guideline, actually, for chronic pain for assessment management
was published in 2013, which is quite a long time ago now, actually,
um,
but that provided and that that's for our clinicians and that the
reason we did that actually was feedback from health care professionals that
this is an area where they needed good guidance. Evidence base.
Um,
we are just recently we've got very good news.
The sign organisation have agreed to update the guideline.
So there'll be a new sign guideline updated with the best available evidence,
which, you know,
we hope would be a really good resource for health care professionals.
Um, and also for people living with pain, actually,
because they're involved in developing the guideline.
And there is a patient version as well.
What does it feel like working with people in an advisor city?
So, um,
clearly you work as a clinician
with people all the time,
but how does it feel like kind of blowing some of those boundaries in terms
of working in with the Cape members working
in research with people with lived experiences.
Actually, that's one of the things
one of the things that actually was,
and also with other advanced pain Discovery platform, project in pains storm
that I find really interesting and just, you know, very rewarding
in the involving people with
lived experience from really early on. So from before you even get funding
and saying, Actually,
this is an important research question and why don't
we look at it in this particular way?
So it's actually without a doubt shaped the design
of the project that we're working on at the moment,
and I absolutely think, you know, for the better,
You know, so 11 of the things that you know we know is that
there's new treatments come out,
and when you actually use them in clinical practise,
you don't get the same results that was reported in the in the research studies.
And you think, Well, why is that?
And there's a whole number of reasons for that. One is, you know,
if you're translating from preclinical models to clinical
models there might be problems with that.
But the other thing actually
is.
Are we testing those treatments in the
right patient population and asking the right questions
and actually speaking to people who have those conditions
will help to address your study design so
that you can address both those questions effectively.
And then if you are doing clinical research,
you're more likely to get your true outcome that will reflect
how that particular intervention be an exercise intervention or a new drug.
How that actually performs in clinical practise
and that actually is a really efficient way to work for
the health service when we're short of money is that we're
actually going to develop treatments that work in the people that need it.
That sounds really positive and crucial if we're gonna
ensure people get the right treatment.
And I wanted to ask you about your own journey as a pain
specialist.
Have you changed your perception or practise as a result of
working in this co-produced way?
Possibly not in my day to day clinical practise?
And I would say my day to day clinical practise
is probably changes the way that I do research,
and that's been reinforced in the research arena
or working with people with lived experience.
But
I think at the end of the day, it's, you know,
it's starting to simulate all the different bits, putting together the research,
maybe actually in in terms of
assessing chronic pain,
because we use a lot of kind of validated questionnaires.
And there's no doubt that, you know,
when you speak to people both in the clinic and people you know,
working on Cape and Pains Storm
is that questionnaires don't actually capture the experience.
Question is,
are really good for research because you can come
up with a number and it's good for analysis.
But actually
I think integrating that with more
qualitative techniques where you get a kind of much
more granular understanding of the pain and its impact.
So bringing those together, um, would be more effective.
So I've been asking people living with pain, What does pain mean to them or like
So what does pain mean to you?
What does pain mean to me?
I guess it's my job, which is probably more than 50% of my life.
Um,
you know,
the standard definition of chronic pain is pain
that lasts for longer than three months.
But
I think you know the the more that I do
like pain practise both clinically in terms of research, I think
the more questions there are,
you know, there's there's a lot. There's a lot for us to do.
I'm never going to run out of stuff to do here.
Uh,
but in in terms of chronic pain and the the reason that I'm interested in it
is that,
you know, it just has such an enormous impact on people.
You know it is,
you know, I see patients.
As I said, Chemotherapy in neuropathy is one of my particular interests.
And I see patients in my clinic
routinely, who've had effective cancer treatment, they're cured of their cancer
and their neuropathic pain is so awful
that they wish that they hadn't been cured,
you know? So what? What can we do to actually
take advantage of the fact that we can cure cancer in some people?
But actually quality of life is really important.
That sounds really
that that sounds really profound, that somebody
has had to been cured from cancer, but the pain
means they may, they may not want to be around. Um,
really profound.
So I'm wondering
what your hopes are for the future of pain medicine, pain, support, pain research.
Yeah, So
I might be biassed but living in Scotland.
Actually, I I like the way that we're approaching it.
So we're quite good at collaborating. We like working with each other.
Um,
that I mean, a cap cap is UK wide, actually.
But the other thing that I like is being able
to join up the pieces so we can work with the
Scottish Design Guideline network and we could produce guidelines. We can
work with the Scottish government to influence policy
and influence policy in an evidence based way so that the
research can then be translated quite quickly to change policy.
And actually, to me,
that is maybe one of the most effective things that we can do so that we're taking
advantage of every small step forward and adding it up in an in an efficient way.
That's joined up,
Um,
and that's difficult to do. I mean, the NHS is such a huge
and underfunded organisation.
It's difficult to change things, but if you can,
you work from the bottom up and the top down at some point you meet in the middle.
And then I was wondering like, um
so
I assume that people would come across or find
somebody like you quite far along their journey.
So what
advice or
support?
You know,
what would you be telling people that are starting their journeys
with pain and and act trying to get help for pain?
So I think maybe the first step is an understanding about their pain.
Um, and that's maybe working with their GP or their physio.
But there's also some really good, you know, pain. Charity.
So there's there's Pain Association Scotland,
where they have drop in self help groups.
There's pain concern where
there's really good educational podcasts are
designed for people living with pain.
They've got a helpline,
Um,
other,
um, thing that being concern has developed that I like is the navigator tool,
which is just a kind of
breaks down.
So if you have chronic pain and you're going to see your health care professional,
you you have a look at this beforehand
and it will help you get the best out of your consultation. So,
um, you know, lots of people come along to the clinic, and then they They kind of say,
I wish I'd asked you that the last time, but I just forgot about it.
So this is kind of trying to, you know, help people who have got pain
make the most out of that short period of time that they have face to face,
or even remotely via teams or whatever
with their health care professionals,
so that they can get across the things that are important to them,
things that impact on them
and then also have a discussion about what might be the most effective treatment.
And as you say, you know, if you get to the pain service, you know, in
a university teaching hospital
you're in the small minority. So it's the majority of people who don't ever get there
and making sure that there's education and resources
available in primary care.
Ideally near near to where people live.
That sounds like a really important point,
and people talked about access being really difficult.
I wanted to like take you you back to, um,
understanding, sort of pain. And
some of the
so there. There is a lot of, um
um So
in terms of pain and the links to early childhood, um, adverse experiences.
Um, how What? What would your like? What's your views on that?
Well, I I guess that's what keep is focusing on is to try and understand that better.
And as I said earlier, that kind of
how do you assess that in the first place?
So the first work package, which I'm involved in with Lena Case
and and working really closely with the Patient Advisory Group on
Cap,
is about how how do we as
adverse childhood experience?
And I I think it was really interesting and almost quite humbling at the start.
So what we're trying to do is to design a questionnaire
for that that can be used for research purposes or clinically,
but working with our patient partners so that
we ask the right questions and we ask those questions in the right way.
But until we've done that,
we're involved in reviewing all the literature
and pulling out all the different papers and
the fact that some of the patient partners have
started looking at at that literature with us.
But before that, we thought, well, there are still
some some some
questions that we want to ask, in particular patient populations.
And we need to kind of start that now because there's time pressure and
we've only got funding for so many years.
So we looked at the W H O questionnaire for
assessing childhood trauma
thinking Well, the W H. O is an internationally recognised organisation.
This should be good.
And
our patient partners thought it was appalling.
And that was that. You know? And it just shows that actually, you can't just assume
that you know what's there because it's being used
by a big organisation or it's been published,
is actually correct it and or is going to give you the right answers in any way because
it missed the point. Ask the wrong questions. Ask them in an insensitive way
that, you know, I could The list could go on.
Um, and that that I thought was was a real learning experience for me. Actually.
Thank you for sharing that. I would have
never imagined that would have been the case for such a big organisation. No, no,
no. I
not say that about the
I don't know how it was developed. I don't know how it was developed, actually, but
what we find in reviewing the literature, we haven't actually found any single
assessment tool
that has been designed
with people with lived experience.
So that from Cap, that might be the first one.
When we do that,
that sounds like a really, um, tangible, positive first step. But, um
So what?
My final question, um, to you And then I'm happy for you to ask me any questions.
Is
in terms of Cape and
so, like, what would could look like for you as a clinician, professional,
and a researcher in terms of like, your involvement with Cape?
Well, I guess in terms of being able to do what we said we would do
so I mean, I don't know if you looked at it, but there's there's a lot in Cap
and Tim
Hall who's leading. I think he's doing a great job.
But you know,
we there's people all over the UK working together
on different bits with different areas of expertise.
So
success to me actually has been able to pull that off and
produce, you know, the validated questionnaire to produce very good,
robust data that
will help us understand the mechanisms of
why adverse childhood experience impacts on core
and chronic pain in later life. Um, and also,
you know, for instance, how people respond to painkillers may be impacted.
You know, so specific treatments that might help us
to target treatment more effectively and avoid potential harms
so
that that, to me, is one success.
Another success is that it doesn't stop at the end of four years,
so without a doubt, we will. We will.
We will hopefully add to the knowledge,
but we'll also add to the number of questions that we need to answer.
So
I'm hopeful that we'll be building something
that won't just be cap for four years
but actually
will carry on developing and becoming bigger and, you know,
in the UK and even maybe even beyond that.
And
it's interesting we've had
the Scandinavian
Association for the Study of Pain are really
interested in working with us in Scotland,
um,
on chronic pain and understanding the factors that
increase risk and how we might manage it.
So
there's opportunity to kind of
pull together knowledge not only within the UK and Scotland, but also beyond
thank you. Do you have any questions for me.
Do you have any questions for you? So
I suppose so.
When we were when we were designing the project,
it was me that came up with People's voice media because
I was trying to work out a way.
Remember what I said about, you know, you do the clinical trials,
and then clinical trials and reality
are a world apart.
And one of them, I'm pretty sure,
is that you know,
people who have chronic pain,
you know,
particularly if there are barriers to even get to
the hospital will not participate in clinical trials.
So it was trying to get that
you know, how How can we find ways to support people and to include their voice
in what we're doing within
So that that that really was
Oh,
how you guys got involved because,
you know,
And it was through a patient partner, actually,
in another project that I'm working on
through the Advanced Pain Discovery platform.
And I mentioned that and she said, Oh, I've worked with them and, you know,
they've come up with some really good stuff, so that's
that's That's how you guys get involved.
But I'd be interested
in terms of what you think you're bringing to keep.
So there are things that
are that I think people to media are bringing.
So I think People's West Media are bringing, um,
an opportunity for people to be involved and a way of being involved. That is,
um, and I truly believe this.
It is, um, safe and supportive, and it holds people in that process.
Um,
I just happened to work for people's voice, and I happen to live with
long, long term chronic pain.
I have never spoken
about that with other people with long term pain
other than being on a pain management course,
that is for six weeks.
So for me, it's
personally given me so much to hear
my experiences validated by other people.
I think it's enabled other people to share
their experiences and be more open and honest.
Um,
I think
that my experience of
academia and academics have often been the opposite to cap,
like they,
um, go away and develop something and
then that gets rolled out. But actually cap is really much about
well, here's the people who experience. We want to develop what matters to them.
So that's been
really refreshing and rewarding.
Um,
and I and I really believe that this has
a long life and longevity because it
will affect so many people. Pain. Um, the numbers are just,
um,
unbelievable. You know that when you actually see the statistics
knowing that so many people and knowing that even with
in
those numbers, so many people never get
to see somebody like you
or get to be
I'm really lucky that I've got a great, um,
GP get to be in a relationship with somebody that can make a difference.
And I think
there are gonna be clear, tangible things from these stories that we can use.
So I think these stories will make a difference to professionals.
Make a difference to carers. Make a difference to
people like me that didn't didn't know about
things that I've learned. You know, one of the Cape members, um,
recommended a particular way of me managing a particular bit of pain. And I'm like,
This is working. This is great. I've never heard this before and
it's it's I think it shows that
with those firsthand lived and learned experiences,
you can really develop what matters and what can make a difference.
Yeah,
it is interesting, isn't it? When you look back at research over the last
2030 years,
why did we not think of it before?
No idea.
Yeah, it is interesting,
but
I suppose, Yeah, looking back. So I started. I did my PhD last century not long ago.
Um,
and at that point
involving people's lived experience in your research design,
just,
you know, I think if you put it into funding application,
they would have gone especially a very scientific application.
They would be shaking their heads, saying, What's this about?
Whereas now, one of the things I really like actually is that
you know, it's expected
and that that, to me, is a really positive step change in my kind of working lifetime.
There's without a doubt, a step change in the perception
of
you know why?
Why would you involve people with lived experience in designing your application
and, you know, it sort of. It changed gradually, so
laterally
you would involve people who lived experience from the time that you got funding,
because before you had funding, you didn't have any funding
to allow them to participate, you know, without kind of you know,
asking them to pay for it themselves, which obviously you can't do.
Um, whereas now certainly.
And I think most academic institutions at our university
you know they are willing to
provide funding upfront
so that even if your product is not funded,
you can still involve people with lived experience
in that really early design stage. And I think again,
that's something that's changed. Maybe probably over the last five years or so.
Um, So we'll start.
I think we will start to reap the benefit benefits of that in terms of
how effectively research translates into
impact for patients.
And I think
that
people living with chronic long term pain
face additional barriers to being involved. And I think,
um,
CAP
is really demonstrating that as you can involve people,
you just need to think about it differently.
I
think that will just continue to grow, and it's a good
in itself. I think a really good evidence of how you can do this stuff.
Yeah,
I know another. The paint study that involved in
was
in terms of the information for people that were recruiting to studies.
I don't know if you've participated in a research study.
But the patient information leaflet can be quite off putting,
you know, because of all the legal requirements.
So I attempted to do a
graphical information leaflet with cartoons
with my limited ability, which actually was OK.
And what we're about to do actually over the next couple
of weeks is with two of the patient partners on that project
is is to do a video
so that
so that you know,
people can access through different media and in
different ways the information about the study,
the idea being that, you know, it is not just people who are very literate.
Who can bear to read
this, you know, 10 page long information sheet
and who can then access the study.
Sounds very important.
Um, I know that you have to jump off the call because you've got some other
arrangement.
I'm gonna stop the recording now, if it's OK,
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