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.
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.
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.
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