The Diabetes Information Jigsaw

The majority of the two million people diagnosed with diabetes in the UK are unaware of the dangers of not managing their condition properly, according to new research revealed in a new report published jointly by Diabetes UK, the Association of the British Pharmaceutical Industry (ABPI) and Ask About Medicines. The research shows that one in five people with diabetes are suffering from preventable complications as a result of neglecting to take their medicines, and half are depressed.

 

The Diabetes Information Jigsaw report found that there are significant missing pieces of information for patients about their diabetes. In particular, more than a third of people with diabetes are unaware that they will have the condition for life and half don’t know that diabetes can reduce their life expectancy. Furthermore, 32% don’t realise heart disease is a common complication of diabetes and almost one in five (18%) don’t know that not managing their condition could result in amputations. Additionally, over 60% of pregnant women with diabetes do not realise that stillbirth is a possible outcome of not managing their condition during pregnancy, or that their baby could be born with congenital malformations such as a heart defect or breathing problems.

 

Partly as a result of this missing information, nearly two thirds (65%) of people with diabetes are not taking their medications as prescribed, and one in three people don’t understand what their diabetes medications are for or how to take them because they feel stupid asking questions. Over half (57%) find it difficult to ask questions because they feel there is not enough time during the consultation to answer all their queries or their doctor seems too busy. Perhaps most worryingly a quarter (25%) don’t understand what their medicines are for or how to take them because despite having asked, they don’t feel their doctor or nurse sees the benefit in informing them.

 

The report, which was presented to the Department of Health on 18th July by Adrian Sanders MP, Chair of the All-Party Parliamentary Group on Diabetes, calls on healthcare professionals to signpost people with diabetes to the most appropriate sources of information, as well as encouraging them to ask questions.

 

Launching the campaign Simon O’Neill, Director of Care and Policy at Diabetes UK commented, “Short termism is a great enemy of good diabetes care. As this research shows, many people struggle to realise the importance of taking their medicines, especially if the consequences are not immediately apparent despite the fact that damage caused by not taking their medicines is irreparable. Good diabetes management could be seen to be similar to a pension plan - invest now to gain benefits in the future as in both situations there is no going back.”

 

The Diabetes Information Jigsaw survey also revealed that 60% of people with diabetes don’t know as much as they would like about their treatment options. One reason for their confusion is that they have a poor understanding of medical terms and phrases commonly used in consultations, with nearly a fifth (18%) not understanding as much as they would like about their treatments because they can’t understand what their doctor or nurse is telling them. To make matters worse over a third (36%) don’t even know what questions to ask about their treatment options.

 

Joanne Shaw, Chair of Ask About Medicines, says, “It’s vital that people with diabetes are encouraged and empowered to ask questions, as patients who have a good knowledge of their treatment options are better equipped to make informed decisions about medicines and other treatments.”

 

Richard Tiner, Medical Director, ABPI added, “This report shows that there is no substitute for a good, open relationship between diabetes patients and healthcare professionals who can help them find the pieces they need to complete the diabetes information jigsaw. We hope it will serve as a call to action to healthcare professionals to experiment with information prescriptions for their patients and encourage them to ask questions about their condition and treatment.”

 

To download a copy of the full report please click here.  Also a report for Wales is available please click here.

People With Diabetes Encouraged to Ask Questions This World Diabetes Day
Over three quarters (78%) of two million people diagnosed with diabetes1 in the UK don’t receive any information on their medicines when they are given a new prescription and 36% don’t know what questions to ask about their treatment options.2 Partly as a result of missing information, nearly two thirds (65%) of people with diabetes are not taking their medications as prescribed, and one in three people don’t understand what their diabetes medications are for or how to take them because they feel stupid asking questions.2
 

Therefore, in order to empower people with diabetes to communicate with their healthcare professional and help improve their understanding of medicines two new resources have been made available today.

A booklet Ask About Your Diabetes Medicines contains questions that people might want to ask healthcare professionals involved in their treatment throughout their diagnosis and treatment path.

 

It also signposts people to further sources of information, including patient friendly Medicine Guides for Diabetes which are also launched today on www.medicines.org.uk.  The new Medicine Guides provide easy to understand information about every diabetes medicine to help people with diabetes use their medicines safely and effectively, and make better informed choices about treatment, with their health professional.

 

The Medicine Guides have been developed as part of the Medicines Information Project (MIP), which is creating a new comprehensive structured source of information about medicines alongside information about the condition and all the treatment options. Medicine Guides are linked to information about the condition and the range of treatment options available, provided via NHS Direct Online.

 

These two resources aim to help people make better informed choices about treatment, with their health professional, and to understand and use their medicines safely and effectively.

Simon O’Neill, Director of Care and Policy at Diabetes UK commented, “It is vital that people with diabetes are empowered and encouraged to ask questions because 95% of diabetes management is self care so failing to understand or take their medicines could be fatal. However, our research suggests that many people don’t know what questions to ask which is why we have developed this simple but powerful tool. Alongside the new medicine guide resource, this should mean that people with diabetes are able to ask for and receive the right information about their condition and treatment.”

 

To download a copy of the Ask About Your Diabetes Medicines booklet please click here If you require a hard copy of the leaflet it will be available free of charge from Diabetes UK from the week commencing 20th November, please note if you require more than one copy postage will be charged.  For copies of the leaflet please contact Diabetes UK's distribution centre on 0800 585 088 quoting order number 3025. For general enquiries about diabetes, please contact Diabetes UK Careline on 0845 120 2960.

 

References:

1   Boyle DIR et al. A record linking capture-recapture technique to create a diabetes disease register for epidemiological research, 1998

2   Research Now conducted the Diabetes Information Jigsaw Survey among 505 people with diabetes, June 2006.

 
 
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