Dr Rani Pal is a Consultant Diabetologist from the Horton General Hospital in Banbury, Oxfordshire. Dr Pal and colleagues have developed several new initiatives to improve the care of patients with diabetes, including the “Diabetes in Primary Schools Oxfordshire” programme which won the team the “Diabetes Team of the Year” award at the BMJ awards in May 2013. Here she reflects on another project and some challenges in taking a new direction towards self-care in diabetes.
OX-DOTS seeks to discover the key to self-service, self-control, self-care of diabetes health…..
The Opt-out clause
One young person said to me: “Expectations to be fit, happy and healthy places undue pressure on young people, who can then become demoralised and demotivated. The question of perfection should not be there, because of added pressure. There is already a ‘Constant pressure’ of not living up to standards, personal differences are to be expected. It’s your life and sometimes it takes a severe illness to jolt you into it.”
Young people are living with demands in society with the added problem that poorly controlled diabetes adversely affects concentration difficulties and alterations in mood or behaviour.
I gathered that the vast amount of printed literature and information on websites/ media sources is still an opt-out – of not paying attention to it? Or perhaps sources are not enticing or attractive enough to capture the patients’ interest.
Why Target Diabetes?
Around 3.1million people (7.4% UK population) and 347million worldwide have diabetes (T1DM, T2DM). This is predicted to rise to 4.6million (9.5% UK population) by 2030; diabetes morbidity requires ‘a lifelong package
of care’ and remains a considerable burden for Health Services. Simple lifestyle measures (healthy diet, regular physical activity) can potentially prevent/delay the onset of Type 2 Diabetes, but Type 1 diabetes is not preventable. Diabetes will be the 7th leading cause of death by 2030. Up to 24,000 people with diabetes are dying in England each year from avoidable causes: in those aged 15 to 34 years, compared to those without diabetes, a nine-fold increase is seen among Type 1 (1 in 360), and six-fold increase amongst T2DM (1 in 520); The 2010 National Diabetes Inpatient Audit accounts for 15% of inpatient bed days, where one third of patients experienced at least one medication error.
Why target Children and Young Adults?
Of 29,000 UK children with T1DM, around 40% are primary school age-group: a rising incidence (4% per year) and doubling for each decade is seen, with many under 5 years. A significant number of teenagers are developing secondary
complications of nephropathy and retinopathy before the age of 20years. Minimising these health effects depends on continuously accruing knowledge and retaining a positive attitude to self-health needs.
Targeted resources used to uplift health knowledge in all members of society.
Diabetes (insulin-dependent) in Children and Young Adults is different from other health conditions as it requires 24 hours close attention from carers, continuous dynamic interaction and dialogue, understanding, discussion and problem solving of specific issues, and motivating self- responsibility for life health management. To partake in all aspects of a normal life, children depend on everyone being informed – at home, during school, social or leisure
activities. Parents, friends and relatives, school staff and public all have a role to support them to retain optimum health and glucose control, so that their well-being prevents future health complications which are linked to diabetes, namely eye and kidney disease.
Although there is an array of copious electronic-information and many national and international websites relaying diabetes health information, we want to identify which channels of dialogue are used most frequently by young people with diabetes to empower self-education and management of their diabetes condition.
Questions and challenges
- What is the most effective way to impact on a change of culture and attitude for the present generation?
- How can we examine self-training methods and a variety of information sources and communications?
- What are the most likely sources of Electronic information that young people with diabetes, their families and friends are most likely to utilise?
- What other channels of dialogue and interaction can be used to empower self-education and management of health condition?
- Progressive e-tools – are they the young persons’ choice?
- Can they relate to these as they grow and develop, to progress on their life-long self-education?
- With your experience, are you able take up the chalice of self-care or propose how to develop this for young people with diabetes?
NHS Directive for Self-care
In 2006, the DOH published a white paper, “Our health, our care, our say: a new direction for community services” . It outlines a vision for healthcare as, “meeting people’s aspirations for independence and greater control over their lives, making services flexible and responsive to individual needs”. “Self care is about people taking responsibility for their own health and well being”. “Self management is about people making the most of their lives by coping with difficulties and making the most of what they have”.
OX-DOTS wants to know your views, suggestions, difficult aspirations, campaigns and solutions!