Participants reported that the adult consultants did not really know them or understand their diabetes. at

the children’s clinic I had thorough appointments and saw doctor, nurse and dietitian. More recently, my appointments are a complete waste of time, seeing a different doctor every time for AZD1208 mouse a maximum of 5 minutes … I can’t remember the last time I saw a nurse or dietitian,’ (Young Person [YP], 22). Children, young people and parents had little knowledge of a care plan or any idea what was meant by a care plan. Very few participants had been given information following diagnosis about what would happen next, either in the short- or long-term. Few participants had been told about complications, especially long-term complications, nor were they always involved in discussions relating to alternative treatments, e.g. pump therapy. Most participants who accessed paediatric diabetes services

felt that they had learnt the majority of what they Seliciclib mw knew about their condition from others with T1DM. They stated that they would welcome the opportunity to attend a structured education workshop similar to the DAFNE course13 offered as part of adult services. Children and young people who had attended structured education sessions were in the minority, but commented on how helpful they were. I was invited to a carb-counting class to help me understand how to read labels and be confident with carb-counting. This class was really helpful,’ (YP, 17). A lack of awareness of T1DM among the public and GPs was highlighted as a major concern among participants. It was noted that most members of the public seemed to be unaware of the difference between T1DM and type 2 diabetes mellitus, and GPs were slow to detect the symptoms of diabetes, which led to a delay in diagnosis. I went to the doctor on three occasions and was told each time nothing was

wrong. On the third occasion I was told I would be reported to social services for being an over-protective parent!’ next (Parent of 16 year old). In addition, participants thought that ward staff needed more education on T1DM as they were often unaware of how to treat the condition. In general, there was a lack of education provided by diabetes staff in relation to healthy lifestyles, sexual health and pregnancy. Many parents and young adults conducted their own research on the internet, in order to find out what they needed to know. Those participants who accessed paediatric diabetes services reported having a good relationship with their diabetes team. In general, parents felt that communication was not a problem, since they were able to contact their diabetes specialist nurse at any time about their child. However, those children and young people who had a greater understanding of their diabetes wanted to have more input into their care, be involved in decision-making and be given more responsibility.