• Introduction

    Why focus on diabetes?

    The challenges facing the NHS are well understood: health care needs are growing as the number of older people and people with long term conditions and disabilities increases. At the same time, there is a drive to improve the quality of care – to provide care that is clinically effective, but also personalised to the individual and their needs. And all this needs to be delivered at a time when health and social care budgets are under increasing pressure.

    If we are to provide high quality care that helps people achieve the best possible quality life, we need to rethink the relationship between people and the services that provide their care.

    Diabetes is one of the most common long term conditions and represents up to 10% of NHS spending in England and Wales.

    In person-centred care, health and social care professionals work together with people living with diabetes. Person-centred care supports people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their own health and health care. It is coordinated and tailored to the needs of the individual. And, crucially, it ensures that people are always treated with dignity, compassion and respect.

    Person-centred care approaches can help people living with diabetes improve their experience of care, their quality of life and their health outcomes.

  • What is person-centred care and why is it important?

    What is person-centred care and why is it important?

    Health and well-being help us to live our lives as we choose – this might include everyday activities such as having a family, enjoying time with friends, and working. Some people with long term conditions like diabetes can find it hard to do some of the things that other people take for granted. Person-centred care means providing care that supports people to manage their health to have the best opportunites to lead the life that they want.

    The term 'person-centred care' is used to refer to many different principles and activities, and there is no single agreed definition of the concept. This is partly because person-centred care is still an emerging and evolving area. It is also because, if care is to be person centred, then what it looks like will depend on the needs, circumstances and preferences of the individual receiving care. What is important to one person in their health care may be unnecessary, or even undesirable, to another. It may also change over time, as the individual's needs change.

    Instead of offering a concise but inevitably limited definition, the Health Foundation has identified a framework that comprises four principles of person-centred care:*

    1. Affording people dignity, compassion and respect.
    2. Offering coordinated care, support or treatment.
    3. Offering personalised care, support or treatment.
    4. Supporting people to recognise and develop their own strengths and abilities to enable them to live an independent and fulfilling life.
      1. There are four principles that underpin how individuals, teams and services should work in order to provide person-centred care:

        Being person-centred means affording people dignity, respect and compassion
        Whenever someone interacts with health services, they should always be treated with dignity, respect and compassion. These 'experience standards' are basic human rights that are enshrined in the NHS Constitution.

        Being person-centred means offering coordinated care, support or treatment
        People with diabetes are likely to see a number of different health professionals, from the diabetes specialist nurse based in their GP practice, to appointments with a consultant at their local hospital. Sometimes they may need to be admitted to hospital. It's not just the quality of each individual encounter or episode of care that matters – services should offer coordinated care, support or treatment across multiple episodes, across different teams and organisations providing care and over time.

        Being person-centred means offering personalised care, support or treatment
        Diabetes varies from person to person, and everybody's experience of it is unique. At the same time, different things are important to different people. That means care needs to be tailored to the experiences, needs and aspirations of each individual, not standardised to their condition. It means that the things that are important to the person receiving care and their family are discussed and form the basis of their treatment and care. NHS Scotland's Person Centred Collaborative has distilled this principle into five 'must do with me' areas.

        Being person-centred means being enabling
        The starting point for being enabling is seeing patients as assets not burdens and seeking to support them to recognise, engage with and develop their own sense of resourcefulness, and to build on their own unique range of capabilities. Being 'enabling' means that systems and services orientate themselves towards supporting patients to recognise and build upon their own strengths and/or to recover from setbacks or episodes of ill health so that they can live an independent and fulfilling life.

        A new relationship

        The principle of being enabling is rather different from the others. A health care provider could feasibly uphold the other three principles without the person's input. They could work on behalf of the population they serve to ensure that people are treated with dignity and receive services that are better coordinated and personalised to fit around their needs.

        But for care to be enabling, the relationship between health care professionals and patients needs to be a partnership rather than the professional being the expert while the patient simply follows their instructions. It is a relationship in which health care professionals and patients work together to:

        • understand what is important to the person
        • make decisions about their care and treatment
        • identify and achieve their goals.

        Health care professionals, health and care workers, peer support workers and others, have a role in supporting people to develop the knowledge, skills and confidence they need to manage their health and lead the life they want to.

  • Making it happen: changing services to better support people with diabetes

    Making it happen: changing services to better support people with diabetes

    Health services, teams and individual healthcare professionals can only truly provide person-centred care when:

    • staff have the knowledge and skills to provide person-centred care
    • services use systems and processes that both facilitate staff to act in person-centred ways, and that respond to service users' needs and preferences
    • services are designed to support person-centred care through co-design and co-production between the people who use them and the people who provide them.

    Some of the approaches and activities that support person-centred care include:

    Building people's skills and confidence to better manage their diabetes

    Person-centred care is about enabling people to live independent and fulfilling lives, in control of their health. People with diabetes need the knowledge, skills and confidence to manage their own condition. An increasingly wide variety of courses and programmes are now available to build people's knowledge, skills and confidence.

    • Read more about different types of courses and how to set them up.
    • View and download resources to help you set up and run self-management training for patients

    Providing peer support

    Research has shown that, after attending training in self-management, people's knowledge, skills and confidence to self-manage decline over time if they are not supported on an ongoing basis.

    • Read more about peer support
    • View a video clip about the benefits of peer support for people with diabetes

    Giving health professionals the skills, tools and techniques to support people with diabetes to self-manage

    Clinicians often feel they are already helping their patients to self-manage, but there are a range of specific skills and techniques that practitioners can use in consultations that can really help people to self-manage effectively. Wider members of the team, including admin staff, can also find introductory training helpful.

    • View and download tools health professionals can use in their clinical practice
    • Read more about training and skills development for practitioners.
    • View and download resources to set up and run training for health professionals in self-management support

    Giving people access to their own records

    There is already evidence that people feel more confident and are better able to manage their own health when they have access to their own records, and records access forms an important foundation for the shared power and responsibility that is at the core of person-centred care.

    • When patients read what their doctors write: Read this health professional's blog about her experience of providing patients with access to their records
    • Find information for patients about records access
    • See guidance for health professionals on records access

    Using technology to provide care in different ways

    Person-centred care means providing services that are tailored to meet people's individual needs and preferences, and technology can be a tool to help do this. It can enable health care professionals to deliver health care, health information, or health education at a distance, and at a time and in a location that suits the patient. It can include remote monitoring via equipment in a patient's home, such as monitoring blood pressure or blood glucose; text support reminding people to take their medications and checking how they are; or on-line consultations between a patient and their health professional, as well as many other approaches.

    • Click on the 'Telehealth in Newham' box to find out about how East London NHS Foundation Trust are using telehealth to support people with diabetes and other long term conditions.
    • Read about DAWN – Diabetes appointments via webcam in Newham
    • Watch a video on using remote monitoring in combination with Skype consultations to help patients in Newham manage their diabetes

    Sharing decision making

    Person-centred care means acknowledging the different expertise and experience that people using and people providing services bring, and working together in ways that respect the autonomy of the person receiving care.

    Shared decision making is a collaborative process where people are supported by their healthcare professional to make informed decisions about their own health and care. It can take place between a patient, with or without their family, and any of the healthcare professionals involved in their treatment and care, from their health visitor at home to their GP or practice nurse in a primary care setting, to consultations with a surgeon, specialist nurse, psychologist or physiotherapist in hospital. It is relevant at any decision point along the patient's care pathway and is particularly relevant where a number of reasonable options and choices are available

    • View a series of video clips exploring what shared decision making is, its benefits from the perspective of patients, clinicians and commissioners and how it can be put into practice.
    • Find out about how to promote shared decision making so people feel confident and empowered to play and active role in their own care.
    • View and download resources that can be used to support people who have a decision to make about their treatment or care

    Promoting health literacy

    People with diabetes are often presented with complex information about their condition. 'Health literacy' refers to a person's ability, skills, and motivation to identify, access, understand and make use of health information. Good health information, however it is provided (face-to-face, on-line, in a leaflet etc.), should help people to understand their care and make confident, informed decisions about their health and wellbeing.

  • Commissioner perspectives

    Commissioner perspectives

    Katie Coleman

    To me, as a GP and commissioner, person-centred care means seeing the whole person, so we're not just treating an illness, we're enabling people to achieve their goals. It starts with really listening to people and hearing what's important to them, and then bringing together the different kinds of support they need to achieve it.

    Initially, in Islington, we were looking at improving our diabetes care. We realised that people mainly manage their own condition, and we wanted to give them the skills to enable them to do that. But as a working GP, I could see that you don't just need patients with the skills and knowledge, you need clinicians who have the right skills and a system that enables and supports them.

    We held a workshop with patients, clinicians and providers to understand what is important to people, and from that we set up a Steering Group, developed a service specification based on the Year of Care approach and commissioned a diabetes enhanced service from our GPs. We supported the approach with funding for longer appointments and by providing training and paying backfill to release GPs.

    More recently we have moved our focus away from diabetes and are thinking about how we treat people with multiple conditions as a whole person rather than as a collection of separate conditions. After all, as a patient it makes no sense to have a different care plan for each condition! As a result, we are looking at commissioning a long term conditions service, rather than treating each long term condition separately. This should mean people have a single care plan, and providers are funded for longer appointments according to the number of conditions a person has.

    As a patient it makes no sense to have a different care plan for each condition!

    As part of a more holistic approach to health, we have also recently developed a 'health navigators' service that is designed to ensure people get the kind of support they need at every stage. We set it up because we realised that social and peer support are important to maintaining people's health, but health professionals don't always know what is available. Now they can refer patients to our health navigators, who then link people in to support and services in the voluntary and community sector.

    It feels like we have achieved a lot, but we have worked hard to get here. When we started building a person-centred approach, we were lucky to have some incredibly proactive people driving it forward. We also have some great GPs with a real commitment to their patients, the health of local people and the NHS.

    Person-centred care is still not everywhere, but the more we do it, and drive the approach through locally commissioned services, the more widespread it becomes. We are still grappling with challenges such as how we engage people – particularly those with low health literacy – more and better in their own health and care, and how we get their voice heard at every level within the system, from GP practice to hospital ward and commissioner. I also know that there is more to be done, so wherever I go and whichever meeting I am in, I always relate what we are talking about back to whether it is helping us to achieve person-centred care.

    Read more commissioning resources

  • Patient perspectives

    Patient perspectives

    Colin Leybourn

    I was diagnosed with type 1 diabetes and found it hard to live with. Knowing that I had it for life, and always having to remember to do different things, would sometimes really get me down. The health professionals used to tell me what to do to control it, and although I was trying to do as much as I could, I always felt like what I was doing wasn't good enough.

    Now I have that sense of ownership, I'm much more conscious of my health and what affects it.

    Person-centred care has given me the key to a new life, because it puts the emphasis on me controlling my own health. Health professionals know the medical stuff, but I know myself and how different things affect me – even my emotions. Where before the diabetes ran me, now I'm running my diabetes.

    Now I have that sense of ownership, I'm much more conscious of my health and what affects it. I'm doing different things, like using a health app that does my blood sugar, blood pressure and respiratory rate. It gives me a chart so I can see what's happening with my own health. Some days I eat something, and know from how I feel afterwards that I shouldn't have, but I can laugh about it. I can also tell when I'm about to go down with an illness, because I notice the change in my blood pressure!

    Having an insulin pump has made a massive difference. I used to be on four injections a day, and found it really annoying, but now I do a blood test before breakfast, lunch and dinner, before I play sport and half way through a game. I do six to 10 blood tests a day and no longer feel it's a chore.

    Person-centred care is also care that is more flexible and responsive. In the past I could only contact the diabetes service on particular days and at particular times. Now I can send a quick email or text to say 'I'm having a problem' and I get a response within a couple of hours, instead of days, or waiting to discuss it at my next appointment. That gives me the confidence and motivates me to get in touch if I think something is wrong

    .
    I think the relationship between the health professional and the person using the service is also key to person-centred care

    I think the relationship between the health professional and the person using the service is also key to person-centred care. There's a very relaxed atmosphere in Newham, so I feel I can be more open and talk about what's going on for me, not just my diabetes. I feel we're both seeing the benefit: health professionals are getting more honest answers – like when I haven't done something – and I'm not getting told off, I'm getting the right care for the situation!

    Person-centred care has given me freedom – I'm in control of my diabetes, I'm getting the health care I want and need, and I have really good relationships with everyone involved in my care.


    Lesley Chrysanthou

    When I was first diagnosed with type 2 diabetes 24 years ago I thought it was the doctor's responsibility to 'fix' me. I took my medication, but I didn't have control of my condition because I didn't really take on board that I needed to make changes to my lifestyle.

    In those days, when I had an appointment with my consultant, he seemed frustrated with me and almost angry. I felt like I was being chastised because I didn't have good control and my test results were disappointing. I was confused and felt very depressed. I'd taken my medication as instructed but still didn't have good control. That made me feel like I was really on my own with it. The approach wasn't at all person-centred or empowering. The consultant didn't make me feel supported and in fact made me feel that I didn't want to co-operate because he was so aloof and critical.

    I now know that because diabetes varies so much from person to person, care needs to be personalised, 'one size fits all' doesn't work. For me person-centred care is being supported, educated and monitored by someone who understands me and what my condition is like for me, who goes along the path with me and helps me to get control of my health.

    Previously, I understood the "medical" side of diabetes quite well. I knew the biological causes and symptoms, but not how to control them. When I went on self-management training it really changed things for me. Now my care is really person-centred because most of the time I'm the one who's doing it. I have a better understanding of my condition and I am in control.

    I'm not perfect by any means. I have the occasional wobble but I can make the adjustments that work for me to get myself back on track and maintain my health. My HbA1C levels are better. I feel healthier, have more energy and can keep going after 4pm! I now see the consultant less because my health is better and I have an annual review instead of one every three months.

    I live with my diabetes every single day, but only see a health professional once every six months or so, so it makes sense that it's important for me to know what I'm doing.

    I now see the consultant less because my health is better and I have an annual review instead of one every three months.

    I no longer feel at the mercy of the health service and when I do see a health professional it's a much more equal relationship. It really helps if the health professional has been on training in self-management support. Then we're talking the same language, they understand about helping me to set goals and think through what I need to do. The consultation is more person-centred because I feel heard, and listened to and supported, which makes me more able to care for myself.

    Person-centred care also involves thinking more widely than what happens in the short term. It's relatively easy to change people's behaviour while they're on a self-management course, but much harder to sustain over the following five, 10 or 20 years.

    In Islington, London, we have course reunions every three months and 30 to 40 people come. It's an opportunity to support each other, re-visit sections of the course, do some exercise, hear invited speakers, and ask questions. We all bring food to share so we can have a healthy lunch. The reunions are very well attended and people say they re-inspire them and keep them on track. We encourage participants to meet up with each other as well to do some goal-setting or just have a coffee and share experiences. This on-going peer support is very important and helps people to maintain control.

    For many people it is life-changing – it certainly has been for me.

    To make person-centred care work, I think you need health professionals and lay people who understand the principles, think it's important and are willing to be trained in the skills and approaches they can use. I found the self-management course so valuable, that now I am a tutor. It's important that participants are recruited properly though and understand they aren't just coming for tests or treatment, they're coming for a course learning to manage the medical, social and emotional aspects of living with their condition themselves. They don't always need to be convinced of its value – for lots of people, they become convinced as the course goes along. For many people it is life-changing – it certainly has been for me.


    Trevor Critchley

    I have 15 long-term conditions including type 2 diabetes and arthritis and endure the associated pain, depression and fatigue. Learning about person-centred care has led me to take more responsibility for my health. I now manage my conditions in a better way.

    Up until that point I'd had an 'us' and 'them' attitude to clinicians; 'I'm broken and you're there to fix me' type experience.

    It was when I suffered a heart attack in 2001 that I first came across the idea of a person-centred care approach. After contacting a national charity I realised that there were no peer groups for people with heart problems, so I went on a course called the 'expert patient programme' designed for people with long term conditions. I realised then that I had a role to play in managing my own health.

    I also realised that health care professionals are humans too. Up until that point I'd had an 'us' and 'them' attitude to clinicians; 'I'm broken and you're there to fix me' type experience. Realising that this didn't need to be the case and that, in fact, you can have a productive, collaborative partnership with your health care professional kick started me on the road to self management.

    I have learned several practical ways to use person-centred care approaches. For example, when I attend a consultation with a health care professional I come prepared with a list of things that I want to discuss. I also ask to talk through targets and goals which feel realistic and desirable to me.

    I don't take myself to A&E for diabetes-related hypoglycaemia, which I would have done before. I now know how to manage it myself.

    This style of consultation seems entirely logical to me. A patient brings their day-to-day experience of living with one or more conditions to the consultation and can then benefit from a healthcare professional's background and knowledge. I feel I am being listened to and we work together to find solutions to my problems. I see us as equal partners in the delivery of my care.

    As a result of being empowered to manage my own health, my day-to-day contact with health care professionals is minimal now and I spend less time in hospitals and at my GP surgery. For example, I don't take myself to A&E for diabetes-related hypoglycaemia, which I would have done before. I now know how to manage it myself.

    My increased confidence and knowledge has enabled me to make decisions I wouldn't have been able to previously. This includes no longer taking insulin for my type 2 diabetes. I found it very restrictive and I now manage the condition by leading a healthier lifestyle.


    Prayaag Solanki

    I was diagnosed with type 1 diabetes when I was two, so for a long time my mum and dad were doing most of the management of it. It really limited what I could do, as they would worry about what might happen when I went out with friends. But from the age of 13 or 14, I started to manage it myself and that's when person-centred care really made a difference: it put me in control.

    Because I can communicate with my health professionals by Skype, not only do I not need to go in for an appointment, I don't even need to be local – so I could still use the service when I was away at university.

    It wasn't easy to take the first steps – I was giving myself four injections a day before I moved to the insulin pump. [When I moved to the insulin pump] two diabetes specialist nurses came to my house to show me how to use the pump. That really put me at ease, as it's easier to learn in a familiar environment.

    I was a bit worried that if I had more control and things started to go wrong I wouldn't notice. For me, person-centred care is definitely about having access to support when you need it. The diabetes service in Newham uses Skype, so I knew that I could call or Skype my diabetes specialist nurse whenever I needed to. Knowing that I could just pick up the phone and she would help me meant that taking control never felt daunting – it actually made things easier than they were before.

    When I first got the pump, I spoke to her much more, but now I feel more confident I speak to her less. I test my sugars regularly, and I can eat more of what I want because I am in control. Instead of being tied to an appointment every three or six months, which is a chore, I can get support whenever I need it.

    I would also say that the relationship I have with the health care professionals involved in my care is a really important. I have known my diabetes specialist nurse so long that when we speak it feels like I am talking to a friend. Because we can communicate by Skype, not only do I not need to go in for an appointment, I don't even need to be local – so I could still use the service when I was away at university. As well as being convenient, that also meant I could still have the support of people I know and who know me.

    For anyone who is unsure about what person-centred care is, I would say it is about being in control of your health and of your care, being able to get the support you need when you need it, and seeing health professionals who know you, not a different face every time. For me it's been life changing and I couldn't recommend it enough.

    Read more resources for people with diabetes

  • Clinician perspectives

    Clinician perspectives

    Teresa O'Shea

    When I started as a diabetes specialist nurse I thought: 'you have the condition, I have the knowledge, I'll tell you about it, and you can do what I recommend'. Now I try to work in a way that is more person-centred, which is about putting my agenda as a health professional to one side and dealing with what's important to the person in front of me.

    It starts with building a relationship of trust, and that only happens when you listen to people. Living with a long-term condition can have a major impact on people emotionally, so if someone says they're feeling low, I need to respect that and handle it. If I don't respond to what is going on for the person, I am only treating the disease and that's not very person-centred. Sometimes people come to see me and we don't talk about their diabetes at all. That's OK because it's not about ticking boxes, it's about providing the care which that person needs at that time.

    It seems like I could be overwhelmed by patients emailing and calling, but people don't abuse the system. Instead, not only do people feel reassured that I am here when they need me, but I find they are more proactive about managing their own health.

    Because we have a relationship of trust, I find people are more honest, and tell me what is really happening, not just what they think I want to hear. Sometimes it's hard as a health professional to hear that someone isn't taking their insulin or looking after their health, but when I know the truth I can support them better.

    Something which has really changed things is opening up how people can contact me. Now, instead of me scheduling appointments for people at fixed intervals, patients can contact me by email, telephone and Skype whenever they feel they need to. This approach is person-centred because it shifts the balance of power from me as a health professional to the patient – they are in control. It seems like I could be overwhelmed by patients emailing and calling, but people don't abuse the system. Instead, not only do people feel reassured that I am here when they need me, but I find they are more proactive about managing their own health.

    It's also more person-centred because people's health doesn't change to a timetable, so it makes sense for me to support them when they need it. Of course, we have safeguards so people don't slip through the net, but I don't routinely offer 'an appointment in three months time' any more

    .
    (Person-centred care) has also made things easier for me to manage and it's reduced the number of missed appointments – you can't argue with that!

    Using Skype is also making a difference. Not only is it practical for lots of people as they don't have to come to an appointment, but it also changes the dynamic within the consultation. We have run a lot of focus groups about it, and people always tell us that they feel more like equals in a Skype consultation and are less anxious and more comfortable sharing information. It's different for me too – I feel privileged that I am invited into their space.

    For me, the main argument for person-centred care is better outcomes, both in terms of biomechanical measures and in terms of patient satisfaction. But it's also made things easier for me to manage and it's reduced the number of missed appointments – you can't argue with that!


    Shanti Vijayaraghavan

    As a diabetes consultant, most of the people I see don't just have diabetes, they have three or four other conditions such as high blood pressure and thyroid problems. Most of the time they are doing very well managing their health with very little support from health professionals. Person-centred care is about recognising that people are leading complex lives and it's about how I support them to do that.

    I don't think it's possible to provide good care to people with long-term conditions if it's not person-centred. People are living with their diabetes every day, and I only see a snapshot, so unless I understand what's important to them and work with them to develop a shared plan, they won't follow it and it's futile.

    I can only build that understanding if people trust me and feel they can talk honestly about the things that matter to them, so our relationship is a crucial starting point for person-centred care. In the old days people would have a 'blood glucose diary' and fill it out in the waiting room, because that was all health professionals talked about with them. As a result, we didn't find out what was really going on for people, so it was hard to provide the right care and support.

    But it's not just about the relationship between an individual and their health professional, person-centred care is also about how the team works. In Newham, a high percentage of local people are from black or minority ethnic groups; a large number of people are immigrants; there are high levels of deprivation; and about 40% of the population is under 25 years old. For many people the traditional models of care are not culturally appropriate or just don't work for them. As a result, the team is used to listening to what people tell us about what works and what doesn't and responding flexibly.

    We've actually got a lot of people in the diabetes team, with a large number of specialist nurses, consultants, dietitians and others, and team members employed by different trusts. However, we have been able to innovate because we have a shared ethos around person-centred care, so if we see something that isn't working as well as it might, we work together to try and find a solution. Our patients know that we are trying to deliver the best possible care that is centred around their individual needs, so they are very willing for us to try new approaches, even if they don't always work.

    An example would be when we introduced on-line consultations. We thought it would be more person-centred as people don't need to physically come in for an appointment, but we had feedback early on that the system we were using was cumbersome to access and use. Patients themselves suggested that we use Skype, so after working with our governance and IT departments, that's what we now do. We've had a lot of positive feedback, not only about how convenient it is, but that people feel more comfortable and less anxious about their appointment when they are at home rather than coming into a clinical environment.

    We also adapted how we provide diabetes education after people told us they didn't like receiving 1-2-1 education. Now we provide it through peer support, and people are much more engaged and getting more out of it.

    I think person-centred care is about what happens in the consultation, but it's also about how the service as a whole works to meet people's needs, and the ethos within the team. All sorts of people, from reception staff to patients, have made suggestions that have improved care, and I don't think we will ever stop trying to improve what we do.


    Romilla Jones

    As a diabetes specialist nurse, people are referred to me to help them with their diabetes, but they also come to me with a range of other issues. For me, that's what person-centred care is all about – realising that the person has a bigger life than the bit you see and providing care that fits with the whole person and their needs.

    In Islington London, we have been working on enabling people with long term conditions to better manage their own health, starting in diabetes care. We had a really enthusiastic and committed lead clinician and specialist nurse and we've all been on training in self-management support and learnt skills and approaches that we can use. Now self-management support is team wide – not just within diabetes – and we are all working from an ethos of empowering people and making them more independent. It really is person-centred care in action.

    Often when people come to see me they are worried that I'm going to tell them off about their weight or lifestyle, so I start by asking why they've come to the appointment – it re-frames the consultation as being about addressing their concerns. That is immediately a more person-centred way of working. If they don't mention their diabetes, I say 'This is the time we've got, these are the issues,' and I include diabetes, and I ask 'which is the most important to you for us to address?' In some cases that means we don't talk about diabetes at all at that consultation. For example, if someone is worried about their erectile dysfunction, that might be at the top of their agenda, and they won't take on board anything I might say about their diabetes in any case.

    that's what person-centred care is all about – realising that the person has a bigger life than the bit you see and providing care that fits with the whole person and their needs.

    We've been running self-management courses for patients for about five years now. As more people go through the course, I am seeing more people who come to appointments with ideas about what they want to talk about and get out of it.

    Then I get people to set their own goals, not by telling them, but by eliciting what they want and what they know. Someone may not be concerned about their HBA1C levels, but they might be scared of having hypos and want to avoid them. It might be the same outcome, but it is set by the patient and framed by their terms.

    Then I'll get them to think about what they have been doing and if there might be any patterns. It makes quite a difference if someone has been on a self-management course, because then we are talking the same language and I can refer back to things they have learnt about on the course. Then we can work together on what changes they might make to their lifestyle.

    I think that the days when the health professional was at the top of the hierarchy telling the patient what to do are gone. It's refreshing to use self-management skills in the conversation – it's less about being dictatorial and more about negotiating what will work for that individual patient. I think that supporting people to self-manage in this way does take longer, but some people really embrace self-management and you see significant differences in their health.

    Of course, different approaches work best with different people. How much people want to be engaged sometimes depends on their age and their culture. One of our challenges locally is that we have a very diverse population and lots of people who don't speak English as a first language, so shifting their expectations to a more equal relationship between them and their health professional is even harder to do through an interpreter!

    We do telephone and email follow-up with patients, and some people do home monitoring. Home monitoring can make a difference to how people manage their health, but only if you make it meaningful to them. They have to be helped to understand the connection between the numbers they are monitoring, what they are doing on a daily basis and what it means for their health.

    Overall the self-management support approach has made quite a difference to my job: it's given me more tools to work with and more ways to talk to patients.

    Overall the self-management support approach has made quite a difference to my job: it's given me more tools to work with and more ways to talk to patients. It helps if people across the service take the same approach, so the team is consistent in its practice, and it takes commitment and leadership to achieve that – but I would definitely say it's worth it.

  • Telehealth in Newham

    Telehealth in Newham

    Richard Stubbs

    In Newham we have been working on how we support people with diabetes and other long term conditions using telehealth since 2005 and in 2013 we were the first organisation to be accredited under the EU Telehealth Code of practice. The Code provides a robust quality benchmark and is for all countries of the European Union, fitting closely with the direction set by the European Commission's eHealth Action Plan 2012-2020.

    We have a very high incidence of diabetes locally, and a lot of people with co-morbidities, so we wanted to develop a system that is person-centred in the sense that it can respond to people's different combinations of long-term conditions and can flex the level of support people receive as their needs change.

    People with different long-term conditions often complain that the care they receive is fragmented because each condition is treated separately. One of the challenges to a more person-centred holistic approach is that the way services are commissioned and provided is normally along disease-specific care pathways. To address this, our main telehealth service is not individually commissioned by disease, but is part of a wider contract East London NHS Foundation Trust has to provide community services in Newham. It is embedded throughout the care pathways for diabetes, heart failure, hyper-tensions and chronic obstructive pulmonary disease (COPD) and can support people with any of those individual conditions or any combination of them.

    The Telehealth Team consists of two community matrons, one nurse and, currently, four telehealth care support workers and provides support at three levels, which can be stepped up or stepped down as people's needs change. At the most acute end, we might support someone who has recently had an amputation related to their diabetes, and who has been receiving intensive support through a virtual ward. At the point people are discharged from the virtual ward, something like a carer going off sick can lead to people being re-admitted to hospital, and telehealth is a way of picking up and resolving those problems before they become a crisis.

    The most intensive level of telehealth uses a television-based system called Philips Motiva. When people have been to hospital due to some kind of crisis or problem, it's a good point to make changes in their life, and the Philips Motiva system supports them to do this. Our telehealth team manages the setting up of the system so it is tailored to each person's individual needs, allowing the clinicians to get on and do their job.

    The system has six or seven months' worth of educational content for each condition, which is structured into a “Motiva care plan” for the individual, and which forms part of their wider care plan. The videos are very good for educating people about their conditions, and we find that people watch the same video again and again. People often show the videos to their family and others as they find it a more straightforward and less embarrassing way of explaining about looking after their health than talking about it themselves.

    People can also enter their data on the system, and the system will automatically identify if there is a problem. So if someone with diabetes gains weight, it will automatically send them a video about managing their weight and the possible impacts of failing to do so. The person can view the video as often as they like and a week later the system will send a follow-up questionnaire. If they don't do well on the questionnaire, the telehealth nurse gets an alert to call them and talk about it.

    At the point people are discharged from the virtual ward, something like a carer going off sick can lead to people being re-admitted to hospital, and telehealth is a way of picking up and resolving those problems before they become a crisis.

    Once a person has been through all the content on the Philips Motiva system and is capable of managing their condition, they step down to the next level of telehealth support, which is Simple Telehealth, commonly known as Flo. This uses the patient's own mobile phone and SMS text messages to send reminders, receive patient readings and give feedback. Flo can be set up to support a joint care plan between the health professional and the person, or primarily as support for self-management. At the point of stepping down from Motiva we would set it up as joint care.

    There has also been really good uptake of Flo in our diabetes specialist nursing service, where nurses use it in their day-to-day practice rather than have separate staff setting up the system. I think the reason it works well in the diabetes service in particular is that it allows the clinician to have a lot of control, and it doesn't try to re-engineer or change what people would normally do, it just allows them to do it remotely. Admittedly the diabetes specialist nursing service is disease specific but they work closely with our telehealth team and refer patients who could benefit from the use of telehealth to manage other long term conditions that they may have.

    People don't need to be 'stepped down' to Flo, the specialist diabetes nurses can add anyone to the system for whom they feel it is appropriate. The joy of the system is that it is simple to set up (it takes about three minutes to set up a full package of care for someone with diabetes), flexible and easy to use. Once they're on the system, patients can enter readings at any time of day, and receive immediate feedback. The system can alert their specialist diabetes nurse if the readings reported are outside of agreed parameters. It's not true for everyone, but I think lots of people do pay more attention to how they manage their condition just by virtue of taking control of monitoring it.

    So if someone with diabetes gains weight, it will automatically send them a video about managing their weight and the possible impacts of failing to do so.

    The drawback of Flo is that patients themselves can't see charts of their own data and we know that this something that patients want and value. We have worked round it so we can give them that information on request, and we hope that the option to share it using Flo will be developed in the future.

    We didn't want health professionals to have to move between different systems according to what level of care someone needed, so all patients supported with Flo by our Telehealth Team are also on a system called Motiva Guide. Motiva Guide provides a monthly structured telephone call which checks how well people are, assesses risk and helps us link the information through to Flo.

    At the least intensive level of support, people can be 'stepped down' from joint care using Flo and Motiva Guide to just receiving a monthly phone call, and our aim is ultimately to be able to discharge people from the service completely. Our whole purpose is to improve people's ability to self-manage their condition and to provide them with the support they need to do that. With that in mind, I think we need to see success in terms not of holding on to people in the telehealth service, but of people managing their own health with less and less support from us.

    We're very proud of what we achieved locally. Over the last year we have supported 1,200 people through our telehealth services, 500 of them with diabetes were supported by our diabetes specialist nursing service and 700, many of whom had diabetes and serious co-morbidities, by our specialist telehealth team.

    It's always hard to quantify improvements in health outcomes for people with diabetes and other long term conditions, but we think telehealth is a more person-centred way of providing care. Coming to face-to-face appointments can be time consuming and inconvenient, but telehealth enables people to undertake the monitoring at a time and in a place that suits them, which is much more person-centred, and the level of support they receive can be stepped up and stepped down in direct response to their changing needs. We have great patient satisfaction levels, with 75% of people saying they are extremely likely to recommend the integrated service (face-to-face in combination with telehealth) to friends or family who need similar care.

    From the Trust's perspective, there is also a strong business case for it - a community mMatron can support around 50 patients as a direct provider of care but when that community matron is supported by telehealth and a couple of health care assistants, some 200 patients can be supported – and there are already plans afoot to provide support for other long term conditions.

    Richard Stubbs has worked in the field of assistive technology, both telehealth and telecare, since helping establish the Newham Electronic Assistive Technology project (NEAT) in April '04. Since then he has worked as a consultant to Newham Council, Newham PCT and East London NHS Foundation Trust most recently acting as Telehealth Consultant to ELFT. Richard is Prince 2 qualified and is a registered EC expert in the field of Assistive Technology acting as a Programme evaluator for the Commission.

    See the 'Patient Perspectives' tab to read Prayaag Solanki's experience of using Newham's Skype consultation service.

  • More resources and inspiration

    More resources

    Patient Experience

    • Trevor Torres' perspective on type 1 diabetes
      In this brief and highly engaging video, 16 year old Trevor Torres gives two reasons why he'd recommend type 1 diabetes to anyone and two pieces of practical advice for health care providers.
    • Annie Coops - the thoughts of a nurse with type 1 diabetes
      Anne Cooper blogs about her experiences of living with type 1 diabetes and reflects on what these might mean for her own practice as a health professional and more widely.
    • Diabetes care – taking responsibility
      This article describes the challenges that a child or teen with diabetes experiences when making the transition to self-managing. It explores those challenges and some approaches to managing them from the view points of both people with diabetes and health professionals.

    Resources for people with diabetes

    • Diabetes Care website
      This website is designed for use by healthcare professionals, patients and carers in and around the Portsmouth District. It is a good example of a website intended to provide a resource both for healthcare professionals working in the area who need access to local contacts and pathway information, and also for individuals with diabetes who want to be aware of the services available locally and how best to use them.
    • My diabetes self-management goal
      This one page sheet is designed to help people with diabetes set self-management goals and plan how they will achieve them.
    • Agenda and goal setting form (diabetes)
      This sheet was developed by Whittington Health as part of their work on the Health Foundation's Co-creating Health programme. It is designed for a health professional and person with diabetes to use together to help that person think about what they would like to talk about with their health professional, what goal or goals he or she wants to set and what actions he or she will take to achieve them.

    Resources for commissioners

    • Read Richard Stubbs' guest blog for NHS Networks on 'Telehealth and Channel shift'
    • Watch a video on using remote monitoring in combination with Skype consultations to help patients in Newham manage their diabetes
    • Read about DAWN – Diabetes appointments via webcam in Newham