 I'd like to start by acknowledging the traditional custodians of the lands which we are occupying at the moment and to pay respects to their elders past and present. Just a brief introduction, the Menzies Aurasian is an annual event we run jointly with the University of Sydney as part of our Menzies Centre for Health Policy which is funded in part by the Menzies Foundation. This, I think, is about our sixth aurasian. We have one every year and we have distinguished Australian or international visitor to talk about an important aspect of health policy. This evening's aurasian is particularly of current interest. It's on the issue of better management of people with chronic conditions. We, the Menzies Centre, are just in the process of completing a five-year grant from the NHMRC looking at the policy issues around chronic conditions. So it's not only an important issue but it's also timely for us in terms of helping us formulate where we go in terms of the findings of our research. Tonight's speaker is Professor Anne Rogers, Professor of Sociology and Health Care and Head of the Health Sciences Research Group at the University of Manchester. Anne's research interests lie broadly within the sociology of health care, mental health and most recently social networks, relationships and personal long-term management of chronic conditions. Her research has ranged from exploring patients' experience of services, the social patterning of mental health problems, lay epidemiology, professional knowledge and sociological analysis of old and new forms of treatment, to policy evaluations of self-care and adaptations to new technologies. Anne's recent research interests include a focus on the work, inverted commas, that patients undertake in the area of long-term condition management and addressing how social position networks, relationships and illness work undertake in domestic settings and connect to accessing resources in local and communities, primary care and other health services to support living with long-term conditions. So without further ado, I'll introduce Anne to give us a round of applause. Thank you very much for inviting me to this prestigious talk and I thank you very much for coming. I'm absolutely delighted to be here in Canberra and a lot of the work that I'm going to talk about has actually been influenced very much by having a lot of connections with people in Australia, particularly people in Melbourne and Dickon University and in Griffith University and notions about self-management inequalities and notions of place have really fed into that. So although I'm going to be talking about some of the research that we're doing in the UK, I think it's really quite wonderful that we have this sort of international exchange of ideas that are feeding into self-management. I hope that's all right with a mic. I've got all this new technology. I know it's sort of a bit frightening really. So I'm going to talk to you about social networks, patient work and resources for the management of long-term conditions. And really sort of just want to give a brief overview of what I hope we're going to achieve today in terms of the talk. So I really want to talk a little bit about the health policy context and self-management and really also going on from that to look at really some of the shortcomings of focus on an individualistic approach to self-management for long-term conditions. And this isn't just a sort of critique. It's really to move us on to a phase where as well as looking at individual change, we can acknowledge the sort of wider context within which people live their everyday lives with a long-term condition and particularly look at their lives in community and social context with a view really to thinking about interventions and making things better in a wider context that happen outside of health services. And really central to my thinking about this and that of the team that I've been working with is that sort of social networks are central to mobilizing resources in chronic illness management. Everybody's into social networks and social networking and I think it's got a long way to go in health and it's been looked at very much in terms of the genesis of illness but less so in how we might use it to think about managing. And then I want to sort of focus a bit on mapping personal communities methods that we've been using at Manchester looking at who does what and really looking at some of the results of a survey that we've had with a focus on the place of pets to illuminate the potential social networks which might seem a bit weird the focusing on pets and social networks but actually I think it illuminates quite a lot about relationships and who seems helpful in managing chronic illness management and then I want to just talk a little bit about the implications of the approach we're taking towards policy. What is self-care and how to support it? I mean the most amazing thing about policy over the last 10 or 15 years is that it's gone from notion of sort of self-care being something that's totally invisible to actually being quite forefronted in policy I think both here in Australia and in the UK and here's just a sort of definition of the difference between a definition around self-care and self-care support and really self-care support is where policymakers have come in terms of looking at how health and social care services can provide to enable for people to take better care of themselves and in terms of definition of self-care you'll see there it's a sort of rather motherhood and apple pie definition about the way in which actions people can take as individuals to meet their own social emotional and psychological needs but it's there and I think that is very important that the notion of self-care support has been given so much prominence but it's not just about individuals I mean there's a in the UK and I don't know whether it's the same extent here is that as well as this whole idea about bettering one's health self-care has been linked very much to a political economy view of the health service and this was very much forefronted in the oneness reviews Derek Wannes who used to work for a bank before banks became discredited at least over our side of the world he was set up to have a look at it and the heat actually came up with three scenarios but we only really hear hear about one scenario which is fully engaged the other ones are something like slow progress or medium progress but the Labour government at the time really only focused on this fully engaged scenario and it's this scenario which public engagement in relation to the health health care is seen as high and substitute that for self-care which Wannes actually identified as being actually crucial in actually taking light expectancy beyond what it is at the moment to engage in the new technologies and of course this is seen as sort of a mediation in terms of looking at the way in which health service could actually be contained in terms of the cost and really the gap between the slow progress and the fully engaged scenarios was around 30 billion by 2022 so behind this this apparent focus on wanting individuals to get better by helping their health was this also this very pressing issue around the economy of the health service and sustaining it but the Department of Health over the last 10 years has bought in a huge amount of change in England at least and so self-care was actually covered in a whole range of policies most commonly one he is about the expert patient program but it covered things like the national service frameworks around quality Daphne and Desmond I don't know whether you have those there about diabetes management in the UK and self-care was actually has also weadled its way into the GMS contract for primary care and he's also talked about on the edge of the quaff they're not really quite the quality and outcomes framework they're not really quite sure what to do about it but it's been seen central to negotiating workforce issues in terms of providing quality of care to patients as well in primary care and promoted in wider wide a sort of primary care context in terms of community pharmacy and in also public health campaigns get the right treatment those kinds of things but as well as sort of having an economic focus we talked about sort of a sort of a hobby in person view of the world and actually this became a particular hallmark of policy statements around self-management so in fact Liam Donelson who was the old CMO talked very much here about a shift which will encourage patients to take an active role in their own care to use their own skills and knowledge to take effective control over their life and again echoing that Kate Lorrig's view about the expert patient programs was the idea about producing confident knowledgeable patients practising self-management to experience improved health status and of course there's nothing wrong with that a self advocate is extremely important and having the confidence to self-manage is really is really crucial and this focus on the individual and feeling very confident about oneself in order to self-manage was really reflected in outcomes that were formed the basis of evidence promoting self-care certainly UK and the results of our expert patient trial actually produced three outcomes in terms of two of them in terms of energy which was a substitute for health in a generic way and health care visits there was either no effect or a minor effect but self-efficacy is right up there with nearly an effect size of nine so whatever soft skills training did was actually produced people feeling very confident about being able to manage but I want to argue that there's been a sort of negative side really to this focus on individual and individuals capacity to carry out self-management and this sort of developed really as part of doing the evaluation of the expert program and looking at who was included who was excluded and also doing quite a lot of ethnographic work looking at the groups in which the expert patient program was delivered so one of the things is this this this sort of the idea of sideline side lining sort of lay knowledge and lay practices so that existing ways of doing things that people have been doing was rather sort of ignored as soon as irrelevant or it was seen as maladaptive that you know people had to drop it for goal setting or action planning so what people were actually doing for themselves and how they were managing the sideline and that also meant that attributions about individual behavior was at the expense of other variables and this was very clear in some key groups and and Kennedy very close colleague of mine who did some ethnography in relation to HIV group and the delivery of expert patients saw that actually there were a great number of asylum seekers who were very concerned about being able to stay first born in the country but had very severe material and social needs which was simply not being dealt with in the group they were just sort of sideline for focusing again on the individual and that or another feature of the expert patient program that it was it tended to attract quite good self managers already if you looked at the profile of people who attract them they tended to be middle class people who are quite confident already and able to self manage and often people who actually quite liked being peer deliverers of the of the program and telling other people what to do and it's being recorded here but but they were enthusiastic about the program and that role but the impact of that meant that actually excluded quite a number of people who were identified as being the people who would benefit most from self care actions and part of this is the way in which things like the expert patient program and CDMSP actually operate which is through social comparisons so you go along to the group and it's very positive if you come out feeling better about yourself because you've seen how other people manage and you feel you're managing actually better than they are and that you you're actually feeling more able to to actually carry out these self care actions but if you're not in a position to make that positive comparison actually if you come and feel that you may be worse off you're not going to participate or you're going to have a negative effect and so by definition it tends to try exclude people and there is this whole idea about social inequalities to an extent extent being perpetuated by the type of self skill training that is actually on offer is this also this issue this focus on the individual the empowered patient the expert patient we even had the flatback patient in the UK at one point and there's this whole focus on on on the individual and it's sort of really marginalises I think what's positive about dependence and independence and it's actually that is also part you know none of us can survive all of us are dependent on somebody well I hope we are because actually it would be quite horrible world world if we weren't but that's sort of sideline for this whole focus on people being autonomous independent responsible now because we're not saying that people should be irresponsible or anything or those kinds of things and people internalise that rhetoric and very much take it to heart and you know Wood and Williams back in 1988 you know sort of said it's not it's not really unexpected that actually people refer to a desire for independence because of a fear of dependence is not surprising given the way that is actually construed at times within healthcare policy and in a wider context but it's to that sort of interdependence and dependence I think we need to return to provide a balance with the focus from the individual and how they can actually manage so rather oh goodness the technologies take over that's right okay that's it oops so going back to the policy vision I think it would be unfair to say that the policy around self care at least in the UK ignored the wider context and here's a picture here from a department of health originally slide which sort of shows a sort of jigsaw about how things can actually fit together and so it refers to self care support networks and a range of community services and things like that so it's on the agenda it's just not been very well developed and when people have in policy terms talked about self care support networks they talked really about networks as metaphor you know and shown the way in which sort of health care professionals they're a network or coordination skill trainers they're all there all these people but we don't know how they're connected up or what impact they might have on on people's self care capacities they're just so that's the bit sort of underdeveloped I don't know what I'm doing now here and then when you also think well what the networks refer to and again here's another picture looking at well actually it refers to the formal healthcare system it refers to people getting in touch with their GP and how that's linked to intermediate care and residential care and then people's own homes are just here you know one small little blob at the side there so actually policymakers are very focused for a very obvious reasons on formal healthcare services systems and that tends to actually come through also in relation to self care but there is the other healthcare system implicated by estimation of hours of care of people with diabetes in which again departments of health estimated that for every three hours of professional care there were 757 hours of self care and another 8000 of self care down there so here we are little these little hours but is it self care you know I mean that's the whole thing it remains all these little clocks here but it's not really engaging really with the life worlds of people what's actually happening in that 8000 hours of self care and I think the presumptions about the capacity of the formal healthcare systems particularly primary care to actually have an impact on what people do outside of services is grossly exaggerated now I've got nothing against this some people may recognize here from primary care that it's the John Howie enablement scale and any of us who have done primary care research use this in loads of trials actually because there's nothing else to use and you know it served a purpose but one of the assumptions about this is that the idea of empowerment that you can result from your visit to a doctor in which in the UK is still five or ten minutes and so as a result of this five or ten minutes interface with primary care it seem like you should be able to do all of these things able to cope with your life better, cope with your illness, keep yourself healthy, be confident about your health and able to help yourself so there's something wrong with that presumption that we can all pitch up to our GP and in a five or ten minute consultation we can be empowered to do all of this and that's because of a sort of focus on the consultation to the exclusion of considering other things. So what we've been arguing for in the research that we've been doing particularly in Manchester is for some kind of conceptual shift for a future chronic illness management agenda so really we've got problems as well with the notion of self-management although we've kept it because people know what we're talking about that really been talking about illness management rather than self-management because illness management reflects a more collective view of things and then really from the idea from self-efficacy looking to encourage self-efficacy to looking at the work of illness is distribution and coordination and I'm going to come back to that and then moving from a focus purely on the consultation although the consultation is really still very important to this notion of people's habits as the styles and way and history of the way that they've actually managed their health into and also in everyday settings in workplaces and domestic settings and communities and also to have a focus from professionally centered outcomes we know what professionals think should be the outcomes of self management they are important but to patient-centered outcomes and how those are embedded in normalized in people's everyday lives and really to have more of this focus on personal networks and inter-organizational networks as a way of promoting self management or so one of the things in that became very aware of in the actually looking at more traditional self-management that actually people had already developed particular ways of managing a condition but you didn't often find that reflected in the more formal ways in which people were being asked self-management and so these two quotes are just from two people who have been experiencing inflammatory bowel disease and you know they say you've got to laugh about it you got to have a sense of humor about it you have to get upset about it you know and so you know it could be worse so this idea about laughing and humor you don't often find in formal ways of self-managing but actually it's really very important to people to develop a sense of humor about being in control of things and this whole idea about trial and error you know working out what's what's right for you in terms of what you can eat and what you can't eat and those processes again and ever sort of like reflected very much back into things about diet that people have prescribed to things so there's something there about lay knowledge and lay practices that really should be more highlighted than they are so there's a redrawn picture here in the middle of the picture is the pyramid which is the Kaiser Permanente pyramid of chronic illness management which was adopted very much there's no there's hardly any NHS policy document you can't see without this pyramid here which sort of represents the epidemiology of chronic illness so you've got this massive bit at the bottom which is all about self management and that refers to 70 or 80 percent of the population managing on their own and then you've got disease management and that sort of represent sort of general practice and the way of managing chronic illness in general practice and right at the top you've got case management which is if you're very severely disabled or have a chronic illness you can't leave home then you'll get special case management input and so alongside this we think this picture though it's a bit complicated is really where we're heading so we've added to it things about everyday life there and then this whole issue about the other workforce that's actually going to help people with a chronic illness so it's people with long-term conditions themselves personal communities are voluntary community groups and non-health professionals as well as health professionals so this sort of represents for us a more realistic picture of what the self management map ought to be rather than just that simple pyramid of the kinds of hermeneutics and there's nothing new under the Sun because you always feel a bit of a fraud with these things that put the the the pyramid really reflects work by Kleinman done years and years ago which was circles more fashionable than pyramids and it actually outlined very clearly people's beliefs and choices and decisions and looked at the popular sector versus the professional sector and really you have that picture here all that time ago in 1976 so the old ones are always the best and we live in recyclable times but you know don't mention where the roots of these things come from and so sort of taking the climate and our newer pyramid version of things we have been looking at how we developed a research agenda which is part of National Institute of Health Research, Collaboration, Leadership and Healthcare Research programme of work which focuses very much on people with long term conditions and so these are just really reflecting our thinking in terms of what we wanted to do with this programme of research so we've been very lucky because we've got five years funding and that's morphed into another grant across Europe to be able to look at people's self care support systems in this particular way and the idea of doing that is really linked to an implementation agenda it's not just to go and find out how people manage but really what can we learn from that in terms of how we might develop new interventions or new ways of doing things which is actually much more challenging than going out and finding out what these networks are and I'll come back to that in a little bit and also we have to do this thing about effectiveness and cost effectiveness and we have to do randomised controlled trials because that's how things get incorporated in the context that I work in in particular and particularly from the National Institute for Clinical Excellence is expected these things are trial so there's two key concepts here one of them is about social networks and personal communities and the other ones about work now what is it about networks that make them a good analytical tool and really it's the work of people from America, Nicholas Krustakis and John Fowler who have actually been looking at networks in terms of the genesis of chronic illness and also very much looking at sort of healthy behaviours and I think the merits of their approach and of course being Americans they've got massive data sets that can do wonderful things like from the Framington Heart Survey in which to follow people out with heart disease over many years so had a fantastic data set to link everybody's networks together but the key things to take away from that body of work is basically that behaviours are seen as collective phenomena so that in adopting unhealthy behaviours and in changing behaviours rather than focusing on the individuals it's focusing on networks and so this whole thing about as being much more powerful than individual behavioural change and they've shown that in a series of studies and I think they're very powerful these studies they show that gaining weight and obesity is one of the key challenges we've got in one person it's associated with weight gain in others in a network and it's not your most immediate people it's actually people slightly distanced from your friends and those sorts of people and therefore actually trying to deal with obesity isn't about focusing on the individual and mithering them about their weight and the way they've done about smoking but it isn't looking very much at how we can use those networks in order collectively to get people to lose weight so it happens all together as a community rather than as a single thing and he showed that with things like smoking behaviours and it showed how smoking behaviour spreads through close and distant social ties and that actually groups of interconnected people stop smoking together and you can see that you can see that people can't be bothered to go outside and smoke anymore once they may stop smoking and so it goes on and it's also he's also shown that in relation to happiness so this the second idea that comes from this work is the notion of contagion rather than the individual so that actually using contagion which we know spreads through networks we know cows for example they have epidemics together and it goes through that so disease spreads through contagion but so does social phenomena and he's looked at it in relation to things like sexual behaviour so there's something there that we felt was very important and trying to look not just at the cause of some of the problems perhaps in relation to chronic illness management and then this this second issue about illness work again not only climate but bring on Corbyn and Strauss from 1995 and we have three types of work which help us focus on this notion of work so Corbyn and Strauss identified actually a number of types of work it was originally three so we had illness work which is concerned with symptom management taking your medication monitoring your blood pressure those kinds of more traditional symptom management and then everyday life work which are the practical tasks that people with chronic conditions still have to carry out such as house work, caring, paid employment things associated with your other role and then there's this important notion of biographical work which is that the work that you have to do in reconstructing your biography when you get a chronic condition to make sense of your illness and to carry on and added to that it's expanded a bit so we've got things like articulation work which keeping things on track making an appointment so often people wonder why people who refer to council don't take it up it's because nobody's there to make appointment for them so this notion of articulation work is about keeping your health and your healthcare on track and then there's other things like emotional work so what's the point of focusing on work and there is a tendency within the Corbyn and Strauss things just to add work on to anything and so I think it's more than just calling it work I think there's a reason behind it and I think it's about the way in which the notion of work draws attention to the role of others and a division of labour so aspects of work are done at an individual level and rely on the self but also collective work family members form a focus of what goes on often in illness and management often it's a dyadic sons and mothers wife and husband type of relationship that you look at in the way in which actually people manage and deal with health and then there's a broader notion there's network networks focus in which the group and the family link to personal communities in carrying out work so that's why I like it because it implies a division of labour some of the work is done by the self and some others so it has a sort of heuristic element to it and this is just key questions for research but I think I'll just go on for that and so there is what one associates social networking with very much a very modern phenomena about doing work online if you like and again these are some quotes taken from an evaluation of the expert creation program online and what people did outside of the course that was being delivered online which shows that about how people connect with other people in trying to actually make relationships with other people in order to manage their condition and this is how we translated the types of work into the questionnaire that we're using with 300 people who come from disadvantaged backgrounds in Manchester so we operationalised some of those notions of work into key questions about who helps people with particular challenging things to do with their chronic illness with their health problems who advocates those kinds of things so on one side of this slide we've got types of work and then the questions associated with it and I'm getting to a point don't worry so what one can actually do is first of all see the sort of division of labour of this type of chronic illness work and I don't want to spend too long on this slide but it shows that different people actually do different types of work in terms of biographical work or emotional work and so some groups do work family members close family members more distant family members so you can actually start to see what the division of labour is in a particular community and in this case it was 300 people with diabetes some with multi morbidity living in living in Greater Manchester I want to talk about the method with which some of these network data are being generated partly because it's also as well as being a research method it is a participatory method this was a this is a method about mapping personal communities that's derived from the work of Palin Spencer who used it in relation to look at different types of friendships and what friends types of friendships did different activities so there's nothing to do with health but it has been translated into a variety of social contexts including health and so what we did with 300 people was use these three concentric circles and the person which they call the ego in in in sort of social network language right at the middle and asked them to try and map who was most important to them in relation to their chronic illness and what was the work that they actually conducted and why it's a participatory method as well as a research method is that actually many people hadn't actually thought about this issue or articulated their needs or started to think about these things and clearly when people started to reflect on it it started to actually highlight for people what the needs were and how they were being met so it is I think a form of engaging people with the whole notion of chronic illness and chronic illness management and here's the messy reality of it which is that actually what we do with these things is that we ask people to map out the most important and here this is a person a woman with diabetes who's got a very broad social network and she's actually mapped map quite clearly the inner circle which people most important the second circle still important still important but less important than the first one of the third one important but but in a broader context and so right in the middle here she's put her husband John and the other the mini circles is the type of support and work that he actually provides and then in the second circle you've got actually a whole load of health professionals you've got the diabetes nurse you've got the blood nurse you've got I don't know who Julie is but she's there and the GP and in the outer circle then you've got a whole range of things you've got the church you've got the old and diabetes group you've got the lunch club and a whole range of old friends and so this represents some of this personal community of supporting self-care so actually she's you know compared to a lot of people very well supported so why do some people appear in in in one circle or not another well that actually depends on a whole range of things actually some some people can be less important because they have negative characteristics so Carol for example maybe somebody who nags and so it's actually seen as less important those kinds of things that notions of negative work so how does that translate into some kind of understanding about what's going on here you draw pretty pictures there people in research team really like this thing net draw you know so they go on and draw a pretty picture and this is a simple one here so we've got lots of them lots of things going on here sure operatives and pharmacists are out there and out of it and so you've got the central people here in a network with with John right in the middle and some of these other people here and I just want to go on to the next slide to suggest what they are so in terms of the types of support you've seen their circles and squares so we've got an objective and a subjective way in which people assess what's going on so you can do actually a small range of work but it can be given high subjective importance by the person or you can do the opposite you can have a wide range of work and it can be it can have low subjective importance and if I go back to the thing there you see John there Paul John does everything actually husband but he isn't actually necessarily recognized that in terms of the subjective importance that's given to him oops sorry that's it right okay so I was going to present a load of results you couldn't see properly on on the slides but decided that that was a real turn off so I've just summarized here some of the emergent findings that we're getting from this this survey and we are in the process of just starting the analysis but just to highlight some of the the key issues that it's not surprising really that partners and close family identify most frequently is carrying out work but actually you start to look in more detail then you see that that importance of partners isn't universal and it doesn't relate to every aspect of chronic illness management so the importance of partners is actually lowest in everyday emotional work and that's type of work is where the relative significance of friends and groups is higher and so actually people's mental health needs might be better met by distribution of input from a range of people not just relying on intimate partners but we find that partners contribution is highest in everyday practical work which is you know the body work that people have to do around chronic illness and the traditional illness practical work of medication those kinds of things is highest in partners but actually we find that actually it's people themselves who do most of that work and there is very little potential or limited potential for friends and groups to contribute to that kind of practical work and that's really quite an interesting finding in and of itself one would expect and one can see that medical professionals provide a high percentage of illness practical work but it's fairly static across the piece and so sort of reflecting our universal access and expectations about what health professionals will actually provide and what we're going to come on to next which is that pets are mostly highly rated in relation to the emotional work they're able to provide for people and that's what I want to come on to now and there's a cute picture here I think it's put by one of my researchers Helen Brooks she found this on the internet and she's actually loved doing this work around pets so much she's gone and bought herself a dog I'm a bit concerned about but I really wanted to focus on the notion of pets and it might seem an odd thing to do because your immediate assumption is that when you ask people to put in social networks they're talking about human beings but actually people spontaneously put pets into their concentric circle some people left them out if they didn't see them having a social relationship with the pet and it was just it was just seen as a guard dog or a hunting dog and had no relationship they didn't include them but we found 18% owned one or more pets and they put them in the concentric circles and one of the interesting things about having done the quality of interviews about asking why people had put certain people and certain pets there is that they give you an explanation of their role in helping with chronic illness and just to summarise is that actually there's quite a lot I know a lot of people here will know that there's a sort of quite a lot of literature on the therapeutic benefits of having pets but I think that our research went a bit further than that because it showed that actually pets do have unique qualities and they're not simply substitutes for human to human relationships in long-term illness management and partly I want to come on to this that it allows for an acceptable moral positioning of an individual in relation to the pet which doesn't happen with the support that they get from other people close relatives and the biggest comparison is really between grown up children who often want to help and support their parents more than their parents want them to do that and so you often find narratives of people offering a lot of help grown up children and the person with chronic illness resisting that above anything that you know you have this whole thing other people must be allowed to get on with their lives I don't want them called ever those kinds of things and that's because about this fear of overturning a cherished identity in relation to being a parent and also not wanting to be a burden because it actually does something to people's sense of guilt, shame and their identity and that doesn't impinge in this pet human relationship the data also suggests that pets are able to mediate relationships through very weak ties with others in domestic and community settings and so sort of quite trivial communications about your dog will put you in a contact with lots of people and that's the case also with people with chronic conditions so in terms of providing emotional work pets did significantly higher amounts of emotional work than the friends, medical professionals and groups I was thinking up with a headline about don't go to your GP get a dog instead but I'm not sure it would have gone down very well and the only members doing a significantly more amount of emotional work was actually partners and spouses but the interesting thing about that partners and spouses although they were very supportive and they were highly valued they had a lot of negative work associated with the person and that's anybody's got intimate relationship knows what that's about so it's not surprising but that was absent in relation to people's evaluation of their pets it was only positive no negative things so I just want to briefly sort of cut to the chase here about what the difference between pets and other relationships types are first of all the unconditional support provided by pets and what I mean by unconditional support is that people often pointed to the fact that pets were always there through thick and thin and they're often accounts of how the pet waited there until the ambulance came and that they picked up sensitively what was going on and then this is the idea of reciprocity that the clue behind the lack of shame and guilt that often seems to impinge on people accepting health from other people was they felt first of all a sense of mastery over the relationship with the pet and a sense of equality or more than equality that actually you keep a pet you give food you exercise it in some way or another and so the automatic reciprocation comes with it it doesn't have to be negotiated anyway it just is there and that seems to be really important the other thing is that you can choose a pet so people often talk that they chose particular animals to support them so if people were not very mobile they could choose a pet, a cat and other people wanted a dog and actually some people wanted birds to talk to now we might think that's a bit funny but in terms of communication so the idea of actually fashioning or doing what you want so you can only do that once with your partner really or twice if you get divorced but with your pet you can actually decide what you want from the outset and so you're in control of that as well and then there's this whole idea about your relationship with your animal requires fewer negotiations more straightforward and you have a simple relationship and so it's free of negotiations and the problems with that so all I think this is important is saying that actually just choosing one group of people and I'm calling pets people now which is a wrong thing to do illuminates some of the ways in which people are supported by particular groups of network members and I think it's really important to have a look at that in some details because it does suggest the value of of things like pets and maybe that doesn't appear anywhere at the moment in chronic illness management strategies maybe it should and then I don't want to go too long because I've talked for ages I just want to say something about that in terms of the interventions that we're developing we've also talked a lot to groups groups of people in the community about what works for them and the groups they are and that in doing that what you do is produce a different list about what people's needs are and what people need to be what interventions need to be developed that often they involve as well as health issues they involve things around mobility, practical support and simply participating in leisure activities and we are sort of developing some interventions which try and reflect that in sort of needs assessment and this is called plans in which people are able to identify what they need in particular about people's sense of isolation and being able to link into other people so trying to use networks as the basis of that and so this is in progress at the moment that it can be delivered online or we're going to use it as part of a traditional intervention in primary care so the idea about networks and work leading to a different way in which we engage people in chronic illness management and support people and again, things like actually just people want leisure and other things in connecting with other people rather than just around health and that might be a precursor then to discussing more health issues so where are policy interventions really going one of the dilemmas I have about running a programme that's supposed to be looking at implementation is all the time asking what are the practical implications of this what are the policy implications and really I suppose it's about looking at the way in which health care professionals might use the knowledge about social networks as a dimension of patient centredness in consultations identifying people at risk who may be at risk through a network method people are very isolated and need more attention than others and the idea really of promoting what we call very weak ties in supporting community resources with a focus on reach so often, not just the pets but people in shops, people in pubs perform a very important purpose for connecting people into resources and being able to sustain themselves in the community and that doesn't really feature at the moment in terms of health policies so maybe we need to change the emphasis but overall I think it's really positive that there's a focus on chronic illness management and I really see this sort of policy emerging so first of all it started certainly in 1990 as something that was invisible and that need was sort of met by a lack of access then we've seen self-care as a drive of health service cost containment, Alice Wallace as part of a responsibleisation agenda in self-skills training and now I think it's moving into this era about self-care as part of networks and in the UK David Cameron talks about the big society but at least it's a focus on communities and how there's a link in so hopefully that's where it's going and just to sum up if you haven't listened to anything I've said or gone to sleep this is in three pictures where I think it's policy having been and gone so here you've got typical sort of clinical iceberg sort of not knowing really what's going on beneath the small number of symptoms that are presenting to primary care to a focus on the individual who's been seen as sort of like asking for self-help to this other picture which is about social networks so thank you very much for listening Thank you very much Ann for that talk I'm sure I'll raise a number of questions we have some time for questions and then we'll have time after this for some interaction in a setting of progressions so yes, over here Thank you Ann I'm going to go out from the Campbell Hospital past week for a quick comment In this country we have friendship groupings like the Bumpy Old Men's Group or the Ladies with Big Hats who eat for hot afternoons and teas and discuss all amount of things Could you comment on the value of these groupings in management of health and wellbeing I think those groups are absolutely crucial I mean a similar phenomenon I think was a group that we talked to called the Sugar Group in Manchester who were African-Arabian women who liked to get together to talk about issues to do with their diabetes They were very anti-men they thought it was great that they had men around because they felt that was actually it was quite a helpful thing So I think there are very positive things about connected things but I think one of the issues is about whether voluntary groups or groups actually are quite closed off and more to access marginalised groups or isolated people have to those groups So I think they perform a really good function but I think the same question is about networks and how close they are referred to those groups in terms of the extending to wider population Yes sir I wonder, have you ever looked at whether there is a different reaction from your chronic long-term illness groups to where pets can't be for everybody else because it seemed to me that the kind of the kind of reaction you were describing that people were having where where a pet would be feeling universally true and not necessarily being of a particular benefit to people with chronic illnesses I think anybody who's got a pet would say that The thing about this was we ask people who's most important to you in managing your chronic condition So they identified their pet as being one of those important people So they would be just themselves attributed that value in actually that specific action in relation to chronic illness But I agree with you, yeah I think Germany can find those aspects that are important Kesley I was wondering if you took your network findings to the logical conclusion Could you then argue that the government subsidizes women who wear masks at lunch on a regular basis because the small community groups often have to scrounge around for money and have to reapply There's all this short-term funding that goes on in the energy sector And so do you think network analysis could produce enough evidence that there was value in long-term funding which would only be a drop in the ocean in a sense to get real benefits? You're asking about the need for groups to sustain and continue themselves And so funding might be one issue But there are a lot of groups also that don't necessarily rely very much on funding And I think it's interesting to actually look at those groups who don't receive funding who just spontaneously emerge versus those voluntary and community groups who actually are funded by the state to make those comparisons One of the things is that I think voluntary and local community groups are supported by the state They're often very good But I think we need to look at that to see how networked they are into local communities as well I can't think to what extent we then look at groups that are funded like Meals on Wheels The Meals on Wheels coming 7 nights a week might be really important to a person with chronic illness and it's not necessarily that it's not even meal but because there's a conversation going on there and that could be built in as a factor in their funding in a sense because they're also providing this So I guess I was also thinking about that sort of element I think that's a good way of actually just to find that And I think if you get more evidence using that then that can actually be used as a way of pointing out the value of a particular service beyond delivering a meal, for example John the kidney transplant patient and deal with a lot of dialysis patients We struggle with the issue of how you actually create social networks for patients that have such a lack of energy And I look with envy at the Palcare Society and groups like that where there is such spontaneous contribution to being with people There is some kind of support for it And then I look in the middle where the people have enough energy They may have chronic disease but they have enough energy That opens up the opportunity for active social networks The ones that I'm interested in and whether or not you've actually done any research on the support networks relative to the situation that the chronic illness in person and care finds themselves in I think it's very important that the court conditions say that there is not a generic answer to those things I haven't particularly the issue about people with kidney disease and fatigue but I think there are a group of people that we've been thinking about which are socially isolated from depression and about how you get off first base with people who are so isolated And I think there may be a function for more internet-based groups and forums where it doesn't require people to expend a lot of energy and that they can come off on and offline but at the same time hopefully get the benefits of an online support system and how you can get those networks according to the context of the situation Yes Anyway, rather nicely into my question and I'm also going to take these to their logical conclusion I'm John Rose Bird from the Calvary Centre for Palliative Care Research and one of the things about chronic illness is that so many of them are incurable and so at the end of it people die I'm part of a collaborative research group who are actually macking social networks in communities or people who are dying and John, thank you said something about health care being really strong we've got a lot of information about the carers, the family carers of dying people but not about that wider network so this is highly relevant I guess my question to you Did issues about end of life come up in your interviews with them in their discussions of networks? Did they see that these sorts of maps were going to sustain them through the end of their lives with these chronic illnesses? Well the answer to that is no because I think particularly group we have these were people with diabetes and some people had multiple morbidities currently heart disease and CKD, chronic kidney disease but overall they didn't talk about end of life probably because we didn't ask them specifically about that we were very focused on contemporary management and there is other research looking at notions of prognosis and recovery or not in terms of that so it didn't come up but I think it's highly relevant and this is where I think you're right about drawing both comments are correct about the type of condition that people experience because there is some evidence to suggest that actually some people with cancer don't want to sit around in a group with other people with the same thing because it just perpetuates a very negative view of things in fact they don't want to be with those sorts of people but because the cancer field is so complex now there's also this issue about survivorship cancer and no longer need intensive contact with health services but feel bereft because they're no longer in treatment or having a connection with health professionals and there may be that networks and network support for those particular people will be more beneficial or relevant than this issue about when people are end of life but I think it's an interesting area and it's an area that sort of needs further exploration Oh good, I must catch up with you there I was just wondering I'm presuming your research that you started out from the recruitment process with people with long-term chronic disease but my interest is in that our most vulnerable members of the population are the ones who often have no social networks at all and are often actually sitting with undiagnosed chronic disease and our outcomes are even much much worse so I mean I work in health operations so I want people to be physically active and to eat healthy food but in the first instance what we've acknowledged is that we actually need to establish some sort of connection with this population before we can even start talking about which activity about smoking or and what we're actually finding is when we are able to engage with this population there's an enormous amount of identified chronic disease so your worst outcomes are actually the populations with no social networks at all I was just wondering whether your research was going to actually give you the opportunity to do some work there Well we've focused ourselves not at the health promotion end because that's the end that I see people like the Christakus people operating with healthy populations but I think your point about engagement is really important I think whatever the intervention there's a huge need there to start engagement seriously I don't know how people expect people to come in and they're supposed to participate and they're supposed to be in power and they're supposed to share decisions and yet people have done no work with people about articulating a need or discussing that and so I do think there's sort of independent work to be done around the issue of engagement whatever the intervention is which is I think part of the answer to your question I think when you're saying people are totally isolated and don't know they've got a condition or they're at a risk I'm not sure I'm really sort of hooked into that element of it at all because I don't see how you might engage with those people We might just take a question here and then Russell to his question It reminds me of a really quick question there was about four slides back that was actually sort of a summary of you know this is what you should be doing No That, sorry I just didn't finish that one I went through it because I saw the time You know what can we do These slides are available online I think anyway Yeah, this talk and the slides will be on our website We've gone over time and we're keeping people from their drinks It's awful to be in that position Sorry, I'm a long-term survivor as well as a person with a long-term in front of illness and perhaps can answer your question a little bit about people that necessarily define themselves by their illness so I'm really interested that you've changed the focus away from health professional care to person-centered care to use that term and I think that's really important but I think there's a precursor to the behaviours that you're looking at from people with chronic illnesses and the work that you've defined and that's understanding their knowledge and attitudes and beliefs and values and you haven't done anything like that There is a term that comes out of something working out of Flinders University called epistemological dissonance between health professionals and the people that they're treating and that's relevant and we really preach this to this work that you're doing and why we're having to talk about that one of the logical differences Thank you, I agree with you I think there is a epistemological difference between types of knowledge and practices and sort of use the word lay knowledge or lay epidemiology to refer to that which I haven't done in this talk but that's I suppose where unpopular epidemiology which is where we're coming from and the name is epistemological dissonance it sounds like it could be Well, it's part of defining the tools for the problems and then finding the otherwise but professionals define it if they apply the rules Well, it is interesting because the other idea is that I think you need both because how do people know that I think there is still a role for expertise and access to very very good information that's evidence based alongside that knowledge I think you can use both knowledges but they're often not used together and often people don't have access to very good evidence based information either and so I would say that's crucial at the same time, I wouldn't see as one displacing the other I'll draw the questions to a close and the session to a close now Thanks very much, Jane for an illuminating discussion of the subject it's very murky anyway it's almost as difficult as purchasing a mobile phone and working out what the plans are so look, thanks very much Jane and particularly thank you for coming all the way over here to engage with us and I'd like you to always get doing your hands again and thank you