Guest Post from David Mapletoft, Diabetes Educator
This September will be my 35th year as a registered nurse. In all that time I have done many things: midwife in delivery suite for 15 years; cardio-thoracic intensive care for 5 years, and now as a diabetes educator for the past 18 years.
The one thing that I still cannot understand – given that on almost any hospital ward in the world at any given moment there will be a person living with diabetes – is the lack of understanding from some experienced health care professionals about how a person with diabetes struggles physically and emotionally from the daily grind of living with diabetes.
Levels of Understanding
Of course the health care professionals who are proficient in teaching diabetes self-education and management – your diabetes educators, dietitians and endocrinologists – have the highest level of experience, and are the best people to get sound advice from (as long as that advice is individualised for you).
But in hospitals (as in the community general practices) there are many well meaning caring health care professionals who have limited knowledge and understanding about how your day is affected by diabetes.
New student nurses and doctors may know how to spell diabetes, may know the science about insulin and the Krebs cycle, but don’t truly understand the daily struggle to keep those blood glucose levels on target, or how the power of words can so quickly have the people living with diabetes feeling guilty or ashamed, especially if they’re being told they are not ‘complying’ with the advice (orders).
This term always indicates to me, as a diabetes educator, that the health care professional using it truly does not understand what it is really like to live with diabetes, and that they expect you to ‘do as you are told’, rather than working collaboratively with you to enable a safe and healthy diabetes self care plan
In traditional medical models of care, the roles of team members, and the work performed by each team member, are defined by the physician. The ‘Team Model’ demands a shift toward shared leadership which promotes mutual problem-solving, open communication among all team members, and team cohesiveness. Undoubtedly, most organisations will still be inclined to identify a physician as ‘team leader’, but the nature of that leadership role must evolve from the traditional physician leadership role, towards having you – the person living with diabetes – being in the role of Captain, making the decisions.
The DCCT provided a demonstration of such a change. Initially, the physicians were the primary diabetes care givers and directed the day-to-day activities of other team members by assigning tasks and responsibilities. As the study progressed, however, the physician’s role developed into that of ‘team builder’, with emphasis on development of ideas, cohesiveness, and problem-solving skills.
Captain of Your Team
In the world of health, it’s not often that the patient is at the helm of the treatment. But as you and I know, that’s where a good quality of life, and a successful, healthy future is going to come from. Trying to be the ‘Captain’ of your own Care team, asking your team members to work with you, is a very different way of thinking for most doctors and health care professionals. The question “How can you help me to design and refine a safe and effective diabetes self care plan?” is probably not something they hear often in their day to treating patients.
To take the lead takes time and patience. For people who are used to giving prescriptions and orders it may take time to change their paradigm – to work collaboratively rather than
Public Awareness and Complaints
Most people not living with diabetes don’t understand what it is like. One of the difficulties in living with diabetes is dispelling the myths around why people get diabetes.
By writing letters to the press and your local politicians when stories are published, or when decisions are made in parliament that you feel are going to cause you difficulties, raising public awareness of the facts, can be helpful.
When any issues occur in hospital, putting something in writing may help the health system improve. Once a letter of complaint is addressed to a politician, an inquiry within the hospital must take place. Change is then more likely to happen than if it was only a verbal complaint.
You have rights, find out what they are if/when you are admitted to hospital.
The answer is with you. Setting goals for yourself-short, medium and long term health goals- and sharing them, may help your health care professionals see what it is you want to achieve and give you some direction to reach there.
Asking those questions of health care professionals that you have always wanted to ask, no matter how simple, how small (and so often a person not living with diabetes may assume that you know everything) may be just the breakthrough that you need to get back on track (or help you get started in the direction you want to be travelling in).
Family and friends – whether in person or here on the internet can be helpful in keeping you in that healthy place that we all want to be.
For the past 18 years I have learned just as much (maybe even more) from people living with diabetes than I have from textbooks and seminars. When I am asked questions by people living with diabetes, it gives me new ways of looking at things, or helps me go find the answer, improving my knowledge. So, ask questions of all your health care professionals! Make them think.
A long journey begins with only one step. Keep walking. I wish you well.
David, Diabetes Educator