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.5
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.2 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.2
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.2
The report which will be presented to the Department of Health today 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."
For further information, please contact: ABPI Press Office 020 7747 1410
Boyle DIR et al. A record linking capture-recapture technique to create a diabetes disease register for epidemiological research, 1998
Research Now conducted the Diabetes Information Jigsaw Survey among 505 people with diabetes, June 2006.
Morgan CLI et al. The prevalence of multiple diabetes-related complications, Diabetic Medicine 2000;17:146-151.
Accu-Chek survey among 962 people with diabetes, Jan-March 2004.
Diabetes UK/MORI. Awareness of diabetes and Diabetes UK amongst the general public. Feb 2006.
Confidential Enquiry into Maternal and Child Health (CEMACH). Pregnancy in Women with Type 1 and Type 2 diabetes 2002-2003. England, Wales and Northern Ireland. Oct 2005.
Notes to editors:
Diabetes UK (www.diabetes.org.uk) is the largest organisation in the UK working for people with diabetes, funding research, campaign and helping people live with the condition. It has over 170,000 members and is working for people with diabetes, their carers, family and friends. The organisation represents the interest of people with diabetes by lobbying the government for better standards of care and the best quality of life. Diabetes UK spends over £6 million on research every year to improve the treatment of diabetes and hope that their research will ultimately lead to finding a cure for diabetes. Diabetes UK's mission is to improve the lives of people with diabetes and to work towards a future without diabetes.
The Association of the British Pharmaceutical Industry (www.abpi.org.uk) is the trade association for about a hundred companies in the UK that produce prescription medicines. As part of their role they have encouraged Datapharm to develop medicines information for patients which is available online at www.medicines.org.uk.
Ask About Medicines (www.askaboutmedicines.org) is an independent campaign to increase people's involvement in decisions about their medicines use. Ask About Medicines Week 2005 will take place from the 7th - 11th November, under the theme of Ask.
In 2004, the Department of Health issued a strategy document entitled 'Better Information, Better Choices, Better Health' which sought to improve access to information for all patients. Within this document, a number of initiatives were outlined as valid ways of strengthening the relationship between patients and healthcare professionals through the provision of tailored information including 'information prescriptions' and 'power questions'.
Information prescriptions, provided by the healthcare professional at the time of consultation are an individualised way to 'signpost' patients to appropriate sources of further information and support. The prescription would be given following discussions about the patient's concerns, fears and information needs surrounding their diagnosis and treatment.