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‘The Good, the Bad and the Ugly’ of Diabetes Care: The Patient Experience

The APPG on Diabetes has launched its investigation in Diabetes Care to improve standards and reduce variation and this week held its first meeting on: Setting the scene: the patient experience.

Data from the National Diabetes Audit shows that people living with with Type 1 diabetes, people of working are and people living in certain parts of the country are receiving considerably worse routine care than other people with diabetes. There is a lottery in diabetes care by post code, age and type of diabetes.

To gain an insight into how varying care affects those living with diabetes and to understand individuals’ personal experiences, the Group heard from people living with both Type 1 and Type 2 diabetes.
IMG_2846Thomas Brown, the first panel speaker who has Type 2 diabetes, explained that there was ‘a vast difference in diabetes care at practices, even within a post code’ and that access to relevant health services to help manage diabetes and its complications are not routinely offered.  Good quality foot care and information about diet are important to better enable those living with diabetes to manage their condition, and therefore access to podiatrists and specialist diabetes dietitians are vital.

The level of diabetes education for health care professionals to competently diagnose and treat diabetes was raised as a factor that influences the initial diagnosis and level of care delivered. Two of the patient speakers said they diagnosed their diabetes themselves and were initially dismissed by their health care professionals as having other health issues.  Panel speakers and meeting attendees stressed the need to look at the diabetes education for health care professionals to improve diabetes diagnosis and management.

The second panel speaker, Ruth Waxman, called for better awareness of the risk factors for developing Type 2 diabetes among the population and better awareness of symptoms among healthcare professionals is needed to ensure early diagnosis. Equally, after diagnosis as Ruth said it is ‘important for patients to know about their diabetes, head to toe and everything in between’, therefore access to information from leaflets to structured diabetes education courses is essential.

IMG_2852Jenny Dias and her son Sam spoke about the poor hospital experience and care they received when Sam was first diagnosed with Type 1 diabetes at age four. Sam was suffering with diabetes ketoacidosis – a life threatening complication of untreated Type 1 diabetes – when he was admitted to hospital. The lack of communication and explanation about Type 1 diabetes to Sam’s family from health care professional caused unnecessary stress. This experience prompted Sam’s parents to do their own research to find the best Paediatric Diabetes Consultants in their area and transfer their care there. It was important to Sam and his family that their doctor was pro-insulin pump, as they feel this technology give Sam greater freedom and control of his diabetes.

Sam, who is 11, is now confident managing his diabetes, and his family, friends and teachers are all aware of his Type 1 diabetes and understand how to support him. The high quality of diabetes care Sam gets at his diabetes clinic makes him want to learn more about his condition, and he explained to the Group that ‘it does not feel like a punishment’ having to attend. The diabetes nurses take the time to tailor their advice to Sam’s needs, he is a budding sportsman and finds his diabetes doesn’t hinder his sporting activities. It is this level of specialised care this Sam’s mother Jenny feels should be available to all those children living with Type 1 diabetes.

IMG_2856Lauren Proctor, the final speaker, has experience first-hand of ‘the good, the bad the and the ugly of diabetes care’ having moved around the country a lot after her diagnosis with Type 1 diabetes whilst at university. Lauren told the group that the expression post code lottery of care ‘implies a prize. However, fundamentally all it means is good care, something that all those living with diabetes deserve.’  The management of Type 1 diabetes requires patients to make crucial and potentially fatal decisions on a daily basis. The time spent managing their diabetes falls almost entirely to the patient rather than the health care professional. Therefore, structured self-management courses such as DAFNE, DESMOND and X-PERT are a key part of care to enable those living with diabetes to better understand and manage their own health.

Many of the panel speakers and meeting attendees touched on having issues with access and availability to relevant diabetes technology; whether that be a new type of medication, new generation insulin, blood glucose meter or insulin pump. This will be the topic for the next APPG meeting when the Group looks at variation in access to technology in May.

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