Key:

NZ       Nahida Zaman

DC       Dr Deborah Christie

NZ          You are listening to Nahida Zaman with another edition of Diabetes Radio.  My guest today, Dr Deborah Christie.  Doctor, hello and a very warm welcome to Diabetes Radio.

DC         Thank you very much Nahida, it is lovely to be here.

NZ          Dr Christie, you are a Consultant Clinical Psychologist, an Honorary Reader in Paediatric and Adolescent Psychology at the University College Hospital, how long have you been in this role and what are your research interests?

DC         I have been at University College Hospital now for just over 12 years and I am both Clinical Psychologist as well as a Researcher.  In terms of my research work, I am interested in developing practical and achievable clinical interventions that can help young people live with the effects of chronic illness so we are very interested in developing interventions for young people living with diabetes, for young people who are overweight and we are also interested in looking at the after effects of infectious diseases like meningococcal disease.

NZ          You gave a highly interesting and timely lecture at the 2011 World Diabetes Congress, what was the title of the lecture and what was your focus?

DC         The title was Engaging the Person in their Healthcare, How Do We Help the Person Who Does Not Seem Interested.  The lecture really focused on the importance of shifting the perspective of healthcare professionals rather than trying to make people do what healthcare professionals want them to do.  What I am interested in is trying to get healthcare professionals to understand what it is like to see the world through a patient’s eyes and find out what would make the individual living with the disease want to want to care for themselves better so I am drawing upon expertise and motivational interviewing, trying to help identify what would make healthcare behaviours important for individuals, what would increase their confidence and also at what point self-management becomes a priority.

NZ          What are some of the contributing factors that lead to disengaged patients?

DC         Actually disengaged patients are not different to the rest of us so any of us at times will not do what we are supposed to do.  For example sometimes we just get too busy to do things.  Sometimes we have competing demands.  We have very busy lives, all of us have very busy lives and if we think about some simple things that all of us should be doing like painting the spare bedroom or making sure that we tidy the house or even practical healthcare behaviours for ourselves like eating a healthy diet or cutting down on the amount of alcohol, often people who do not have a chronic illness do not even do those things but all of the same things apply for people who live with a chronic illness, sometimes they are too busy, sometimes they are just fed up with living with the condition and one of the key factors to difficulty with following up the medical regimen, the fact is the timed diagnosis, particularly with adolescents so young people who have had a chronic disease for a long, long time eventually get very fed up with all of the demands that they have to follow so it is really a combination of those things, it is about having to live with something, having to follow instructions and again not being able to do things that other people are able to do, not being able to just go out and have fun or go out and sometimes be a bit daft and a bit crazy but if a chronic illness stops you from doing that then, and diabetes has very, very many things that it can stop you from doing, then that can make you just fed up and decide you had had enough and you would feel burnt out, you just cannot be bothered any more.

NZ          Are these factors consistent across various diseases in patient age groups?

DC         There are certain basic principles that I would say would be consistent so the ones I have just mentioned about being busy, having other priorities, other things to do, those would be fairly consistent across all disease conditions but there are certainly age relevant factors so if you think about the developmental tasks of a child, for example, living with diabetes, a child’s main job if you like is to have fun, to enjoy themselves, to go for sleepovers, to get their own way as much as possible with their parents and to be safe and healthy and happy.  Diabetes interferes with all of those tasks.  It may make parents over-protective, it may stop the child being able to go to their friends because of their friends being worried about the disease, so it can stop a young person, that would be something it would stop the young person wanting to do what they are supposed to do.  If you think about a classical adolescent, now this would vary from culture to culture and I think that is important to mention, a lot of the time our ideas as very west eccentric, we have a very western developed country perspective of what adolescence is but if you take into consideration these cultural differences, adolescence is the time of developing from a child into an adult, it is about exploring independent behaviour, it is about shifting your peer group from parental control to peer influence and then ultimately to independence, it is about trying out different exploratory behaviours depending on again different cultures which may be drugs or alcohol or driving fast cars and if you think about living with diabetes, all of the things that go into the regimens, things like having to check your blood sugars, having to think about what you are eating, having to inject yourself sometimes in public, all of those things can impact upon the extent to which you live your life normally as an adolescent and then you can just follow that through, if you think about how you follow that through into being a parent and living with diabetes or being an elderly person and living with diabetes so within each age group there are going to be specific aspects of your life that are going to be affected differentially by the impact of the medical regimen.

NZ          What are the benefits of having a motivated and engaged patient?

DC         I think the benefits are not just for the patient they are also for the healthcare professional.  If you ask a group of healthcare professionals to imagine that the patient is always complaining, does not follow instructions and is always ‘phoning up worried about their diabetes, how they feel about that person being outside of their door, most of them will say that their heart sinks and we often think about people, the heart sink patients we just cannot seem to do enough for them, we cannot seem to do the right thing so if you can as a healthcare professional take a motivational stance and you can motivate and engage the individual in managing their, because it is their diabetes, it is not your diabetes as the healthcare professional, it is that individual who is living with the diabetes, them and their families, if they are motivated to look after themselves and live with diabetes in a way that it does not take control of their lives then the interactions that you have with them as the healthcare professional are going to be much more pleasant, you are going to feel better about yourself, you are going to feel more successful, you are going to feel all that studying and hard work that you did to become a nurse or a diabetes educator or a doctor or a dietician or a psychologist has been worthwhile and in addition to that you are going to have much better relationships with your patients, there is going to be no more nagging or moaning or trying to refer them on to a different service or get rid of them.  The young person who comes in and sits and is grumpy and stomps out because they do not like what is being said to them, that is a horrible feeling because you do feel that you have failed somehow so having a motivated and engaged patient is not just good for the patient it is good for you.

NZ          Dr Christie, your lecture discussed how we helped the person who does not seem interested, do you have some practical tips to share?

DC         Without going through the whole lecture again obviously, the practical tips, there are some quite simple tips I think.  The very first one is you have to be interested in the person rather than the problem so when you meet with somebody, the interest in them and their lives first and foremost what they enjoy doing, what fun they are having, what things they got on with, what things did they like to do so that is being interested in the person and not the problem, that allows them to see you with somebody who is not just interested in hearing about blood sugars or injections or having a nag at them and that is often a very good way of engaging somebody when they come in through the door of your consultation room and the second thing I think is key really and this is key to all consultations, is finding out what does the person want to get from that meeting with you.  That means you have to then, when they tell you what they want to get from that meeting, you have to focus on that.  A lot of the time people think but what if they do not say they want to talk about their diabetes.  I can promise you that diabetes will somehow in some shape or form come up in the conversation, they know what they have come to the hospital for, they know why they have gone to see the doctor but if you ask them what do they want to be different, what do they want to get from that meeting with you, it shows them that you are prepared to listen to them and focus on what is important to them and if you think about conversations we have with our friends, conversations that we have with our friends where we come away thinking that was so helpful, it was because we talked about what we wanted to talk about and that is another very practical thing, you have to really work on that.  I think the third thing which is really quite a change of mindset for many healthcare professionals who have been trained in perhaps slightly different approaches is to see the client as the expert, to not see the individual you are working with as somebody you are doing something to but to see them as somebody that you are offering a service to and are trying to find a way to work collaboratively with and if you see the client as the expert, think of them as being the person that knows themselves best, parents that know their child best and you ask them what did they think would be ways of sorting this out, asking them are they happy with how things are at the moment, it seems like a very strange question to ask but often you will get the answer no I am not happy with how things are.  You can then go on to start say things like well what would you like to be different, what would you like to work on, how would you like me to help you and they will tell you.  People are very generous and if you are curious and that I think is the fourth thing is curiosity is to retain a sense of curiosity and try and ask more questions than give answers and if you look back on a conversation we have had with somebody and think did I tell them everything then they will have gone out not listening.  If you have asked questions and they have come up with the answers, they will have gone out knowing what it is that they need to do.  Those four things, being interested, focusing on what they want, working on that and seeing them as the expert are very simple approaches to just begin to communicate better and help to engage people in changing their behaviours.

NZ          Should the healthcare professional use the same approach, ie to re-engage the patient irrespective of their age or disease?

DC         Those are basic principles that you can use for anybody and whether it is type I or type II diabetes or a different disease condition.  Obviously what the clinician has to do, the clinician has to use their clinical expertise to talk at the right developmental level so children, you need to be thinking about who are you having the conversation with, are you having the conversation with the little one, are you using age appropriate words for a child under the age of ten, are you using words that are too long or too complicated, would you be better to draw pictures.  With an adolescent, adolescents are very, very sensitive to being patronised so again they are very good at picking out which of the doctors that are not used to working with adolescents and equally adolescents do not want doctors to be chic and trendy and down with the youth as it were, they want us to be doctors and when we interview young people about how they want us to be, they consistently say this, be a doctor, be thoughtful and empathic and listen to what I have to say but do not be patronising and do not pretend to be a teenager and then of course as you work through I think often with elderly patients, again interestingly enough the same thing can often happen, medical professionals can often be quite patronising.  My dad was in hospital recently and I was quite shocked at how doctors spoke to him given that was he was an incredibly bright, intelligent man of 82 and yet they spoke to him as if he was quite stupid and that is with me as a medical professional in the room with my father so I think you do have to really think about what is the age of this person, what is their cognitive level, what interests them and what is developmental appropriate which is why we in adolescent health argue strongly that people should be trained specifically in adolescent health because paediatricians are very good with working with children and adult doctors are very good at working with adults but there is a real gap in medics who are trained to work with adolescents who are a very specific population.

NZ          Dr Christie, you lead a very important trial known as Cascade which aimed to evaluate the engagement, motivation and long term change in a structured intensive education programme in diabetes.  Can you tell our listeners about the design of this trial and some of your findings?

DC         The trial is still ongoing, we are not due to finish collecting our data and reporting until the end of 2012 so you will have to interview me again then for me to actually tell you what the results are.

NZ          We would love to.

DC         Well that is a deal but at the moment the trial is a randomised controlled trial so we have invited 28 different clinics across the whole of the United Kingdom to take part and those clinics have been randomly allocated to either being in the intervention group or being in the control group so once the clinics have been allocated a trial condition, we have then gone in and we have recruited young people between the ages of 8 and 16 to take part in the intervention.  We have trained the intervention clinics, we have trained the diabetes nurse specialist and another member of their team to deliver a structured education programme that we developed at UCLH and it is a four session programme and the content is very, if you like, very traditional and standard, there is nothing new in the content, it is up to date evidence based diabetes management advice but what is different about Cascade is the use of motivation interviewing and solution focused techniques in the delivering of that education so rather than telling people you have to do blood sugars which is in module one, we talk about what will be the benefits of doing blood sugars and get the young people and their parents who are in the group to think about what would be the benefits for them and then we use the same techniques for thinking about why should you monitor and treat hypoglycaemia, why should you treat and monitor hyperglycaemia and also why should you, if you are going to be doing activities, why should you think about looking at your carbohydrate levels, looking at your blood glucose levels and looking at the effect of your level of metabolic control on your activities, so everything is presented in a way that allows people to make their own choices because that is the basis of using motivational approaches.  We really cannot make people change, only people can make themselves change, we can only facilitate that.  In terms of the results, we do not know the results yet, we are still waiting for the data to be analysed by our statisticians and we are not allowed to know until the end of the trial but what we do know is from our process evaluation that it is possible to deliver this.  We have done a very detailed process evaluation so we have looked at what the difficulties are in delivering interventions because with research, very often what happens is people put a lot of money into delivering a research protocol and then once that is finished, clinicians have not got the time or space or energy to deliver it so Cascade is a very practical trial, it is pragmatic in that we have tried to limit the amount of research money that has gone into the delivery, we have asked clinics to take responsibility for delivering it and the feedback we have had from the clinicians that have managed to put the intervention into place is that they have enjoyed using it and so far nearly all of the clinics that have used it have asked if they can continue to use it even though their part in the trial has finished so we know that people like to use it, what we are hoping is that it will have an effect on diabetes control and as I say I will come back and speak to you in 2012 and tell you whether it did or did not.

NZ          How do you see the results of this study possibly affecting healthcare policy?

DC         In the UK the National Institute for Clinical Excellence, NICE, say in their guidelines for diabetes services that all patients diagnosed with type I diabetes should receive structured education.  Whilst there is a demonstrated structured education programme for adults, there is no current evaluated and documented effective structured education programme for children and adolescents so if this programme is effective, if it does manage to reduce HbA1C in a percentage of the young people that have taken part in it and clinics can deliver it in the framework that we have studied then we would hope that at some point this would be rolled out across all diabetes services in the UK and our next step would then be to contact colleagues internationally and see if it was something that could be modified for different cultures and different societies.

NZ          Dr Deborah Christie, thank you so much for speaking with us today.