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TEDx Talks
Published: 2016-10-03
Source: https://www.youtube.com/watch?v=wQ56a1g9CbY
we all love a good story that's why we're all here and when asked for his personal when there's an idea in that story that resonates with those that has a potential to change us my guess is we're all hoping for today that's something I try to explain to my work on a it's one that and something that I speakers which sports in a wider level today
here I'm very privileged in the work that I do I'm a clinical psychologist it was fun not Fairbanks somebody got out there all I get to take Paulton and witness and support people and hearing their life stories and then seeing them make great changes others were privileged on purpose because often that experience is very rich in from my own life I spent most of my career
working with long term conditions conditions such head injury epilepsy headaches Parkinson's disease chronic pain near Moscow what at your muscular muscle wasting diseases in a general I found disability and that list is isn't but in Tyler's onions another trip you know but the medical definition of a long term condition is a condition that lasts a year or beyond and generally is incurable I was in the
UK that are around thirty percent of us to have a long term condition and often people have more than one another thirty percent use up about will utilize about seventy percent of the entire healthcare budget which is a big span's author the population and this is really a %HESITATION a signifier of how successful medicine is being your medicine is very good at keeping us alive now
seeing us through to the end of medical problems and we can all expect to live a lot longer and a family members live a lot longer for the general potential cost of that is that you or a family member maybe that's for the long term conduct these were some coaches so I'd like to get used to right with me and an imagination science it's not going
to produce a lot of laughs because I want you to imagine that you have a long term condition some of this will be quite easy because you may have a long term condition or someone in your family may for others I'm at a point from making three there's a plot you might be very difficult I'm going to try and talk you through it so you have
a long term condition that you've had for five years and this condition has brought with it chronic pain I'm not pain is affecting everything that you do in your life so your job is changed or maybe you've lost your job so your professional identity has been challenged and you'll become nights here about who you are value by itself is being threatened to feel somewhat ashamed of
blacks you are very anxious about what the future might bring go you going to get worse because this seems to be Chernobyl and what will happen in your life if you get worse lots of things a few have been lost from your life because engaging a hobbies anymore you've lost friends essentially pretty bleak just give me a second Cup about a mindset for someone you like
to be a very very big shift from where you're at now you have this one strand of hope which is that your clinical team that you see what's here they are going to do current assessments will give your new intervention but souls solve these problems for you however when you go to see that critical team they give you a very different outlook they basically say we've
run out of options there's no further assessment Smurfit inspections were going to move you to a one year follow up just to make sure just attracted any worse but actually we're going to send you to a mine doctor psychologist because big surprise you ought to be getting on very well you seem anxious you seem depressed cool actually you on production life around these new challenges how
might you arrived you think at that appointment with someone like myself you think you might be angry confuse Sebadoh a bit uncertain as to how having a physical problem leads you to see somebody who specializes in the mind I'm angry that such a how a lot of bad people arrive when they meet me I'm what you might have accurately guessed is that in that appointment with
me young and to ask a lot of personal questions quite penetrating questions about how I like but the thing is people clashes what you might not have guessed that you might have some idea is that I'm going to pitch a whole different idea about how you could cope so currently I would tell you that %HESITATION our universal Weston I tear of health has three steps on
it detail do something get better and what I mean by do something as we have a general concepts ha ha you know minds if we do something we recover so maybe we undertake some like Texas size to have a rest he's a bit better that doesn't work so we see the doctor the doctor prescribed a medication that doesn't work we go Plaskett ask for another asks
for another member referred to a hospital we see ephedrine the list goes on we hope to welcome that we get back the end in fact as well just hope up and we are what we've Germantown shared understanding of full span in the model get to don't get better and what I tend to see is people Lippincott repeatedly to the to something stepped go buy traductor go
back to the consultants be a bit more pushy the US for another of concern ask for a second opinion whatever happens to not let that and let you go the unexpected outcome of not getting better is so one expect but I see it as damaging in itself we'll get frustrated at the health affiliate for stray certain self stop thinking that everyone around them doesn't believe them
maybe that condition %HESITATION just doesn't make sense they don't talk about it rights the right tests all been doing that the doctors not skilled enough they get stuck between these two arrows this fourth step how do you live with a long term condition I would argue is a very shy story in our society against the mold boastful story of getting better no we just expect to
get better all the time unless we have this idea where it comes to health that we never give up never accept defeat you know we celebrate courageous splattering all this full step how do you live with a long train condition how do you adapt things come is what I have to pitch to people in the first hour that I meet them at the very least hasta
what makes and my hope is that the best feels like some so it's like you see what it's like to have that first session with me %HESITATION so when people arrive I immediately will exploit them the junior they've hides through the health spirits till this point being referred to may often that's full of frustration people quite upset is lots of trash hope and validating that is
very important to people what I then sue is I start to talk about what is the difference between suffering with a long term condition and living with one another they actually consider that there is a difference is there is what is the difference between acceptance and giving up those two words actually we if we in the west they seem to be synonymous giving up and also
I don't get people to think about how easy it is for us to instinctively for the people when they are upset how when it's off struggling we think the angry and frustrated and we don't act so I think also introduced the idea that they're also strategies and tools that I might be able to coach and teach them with over over the coming weeks of sessions that
might help them I've seen people make Drake transformations in the clinic room I've seen people come at ten years of being stuck in a really difficult position and she even unexpected outcomes seeing what amounts for people climbing Everest of me other get me wrong not everybody for as well some people don't respond to that and when that's the case it is a genuine fat loss now
you can see that the circular for complete that wasn't because a poor design %HESITATION there is a common theme some patients I'm not saying is that for some people there is a tangible ways that they can get worse if you got in an uncertain with other patients I mean that's that is a real risk of thought you might have Parkinson's disease you may have epilepsy may
have all these conditions where there's a threat as a risk to you that you might get worse the future for those patients is very difficult to speak to quell anxiety and to you know to just go camp except this one to cope with it and so they make but six some form of reassurance not that really comes in the form usually of can you contact the
health service you don't want to be just charged they don't want to be forgotten in case there's a free full in warehouse and there's no safety net this is very difficult for the health service to meet you know the number of people have these long term health conditions trace of medicine continues to do a good job in society gets older and it creates what potentially an
impossible challenge in the west from the current health service which is how do we provide more %HESITATION safety nets two more people without more resource so there is an emerging solution %HESITATION and it's called the health and this is being proposed as a as a part and any health is the idea that technology can be support people support themselves in their own house I work when
I say it helps and people are often quite cynical they either say well you know because we see how it can be very much a piece of technology a perfect see my condition I'm all they just that we understand what the health is the whole idea seems a bit vague that's not totally surprising our program is something like a hundred and sixty five thousand plus UPS
available for health and the idea of what is E. health is a little bit ill defined and if I was to say to you now pick a condition say epilepsy and then find enough that helps you and you may be going a phone and type in epilepsy there would be hundreds of options the question is how would you make a decision about which one is useful
to you and that's what is it you should be making that decision I work a number of health teams I believe that's not how we do that E. health we believe that the hell should emerge out of clinical need health clinic designed to meet in the tales and the health or we ought to select something that exists fits then there's teams I work as a software
designer so I actualizing designing the experience that people have of the software I was %HESITATION I also helped to design the health services what connects through and that's for important because when we do a lot with clinicians and patients you essentially get a tool which hopefully fix what people want and need and connects to the health service like becomes an extension of the health service something
quite vague but he held a once give you an example it's a it's an application that we've created to try and support a particular patient group but it's cool at small and this is the epilepsy self monitor so this %HESITATION tool emerged out of and what is now nearly six years of research in cool it's led to a significant reduction in the number of deaths sudden
unexpected death in epilepsy I'm saying deaths on purpose not a lot of people realize that you can die from epilepsy but epilepsy is in fact one of the top ten causes of death for those under the age of seventy about forty two percent of those people who die of hypothesize that deaths be avoided if they were mine aspects of this is quite a few people are
dying you know and in the UK on Nash internationally so what we did is we undertook some research to identify what were the factors that would predict possibly whether somebody might be at risk of dying this had really been done systematically and we don't soak those factors and created a checklist which was a kind of questionnaire we then took but could check list only applied it
to the histories of all of the people in corn we were tied from epilepsy across a seven year period and when we did that we found that ninety percent of those who died three to six months before they died something change that we would have been able to detect on this check list on that eighty percent of those people who had died have not had a
clinical appointment with an effort to one year price that test this is both a longing and also reassuring and in regards this tool so this so we then want to to %HESITATION pilots its pilots and cool and it's politics refused and what we saw was that for the deaths so we had wanted to make tool that we would have national or international impacts which is why
we created small so if someone is a very simple up %HESITATION essentially it's a it's a number question as you put in your medications you put in the conditions that you've gotten then every three months based on the evidence me into the risks over people it prompts you to complete what looks like a very simple questionnaire in the user might be misled to think this is
actually two simple because you just saying yes no yes no but what about such is doing is it's feeding hole was the most cutting edge research that has a panel of experts behind it to your phone which updates as we take that tools every year repeat that search of one of the risk factors and we take that tool if risk is identified then the US will
give you very very tall but see the ducation around why that's important why needs addressed runs it will signal but any critical care and you can take this device with UT a clinician and it will tell you clinician exactly why you've come in what what needs to be addressed epsilon updates now freely available in the UK is about to be released in the states after winning
a big prize over there and it's been just an extremely well much in terms of prestigious prizes but it's not doing so well is getting people with epilepsy to use it and this is no big surprise really because as I said people don't really get the health I think the idea that I so opera and we could save your life is something that probably people don't
understand yet I'm so until clinicians are reaching for ups when they're writing prescriptions we won't have the full culture shift work remained and this is the fifth we're trying to support my aspirations beyond X. moan and in the wider sector of %HESITATION he held is that I'd like to see the health empower people about their health anonymous hoping to stick way so I'd like to see
that when people get education that education responds to your needs I knows when you need to learn something and that's when it tells you I want to see up slap up look just ups the technology that assesses you in many ways it might be questioners might be wearable senses as a whole host of things in the future that are arriving but it does it in a
sensible clever a meaningful way to use the experience feels like an extension of your health care and that information is fed but your clinical team in a way that when you'll condition changes when you need them they chase you rather than you worrying that you've got to chase them but I also like to see technology that works differently in families so like to see technology where