Understanding patient experience of diabetes in London: Identifying what s needed to support those living and coping with diabetes

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1 Understanding patient experience of diabetes in London: Identifying what s needed to support those living and coping with diabetes Author: Paul Trevatt, Lead London Diabetes Strategic Clinical Network Diabetes support for patients: Survey results 1 August 2015

2 Introduction A positive patient experience is vital when aspiring to excellent healthcare outcomes. Evidence shows a clear link between positive patient experience, clinical safety, effectiveness and quality. Conversely, there is a demonstrated relationship between poorer patient experience and weaker outcomes. In 2014, the Patient Experience working group within the London Diabetes Strategic Clinical Network (SCN) identified the need to learn more about the support required for those living with and affected by diabetes in London. Work areas within the London Diabetes SCN Detection Management of care Equity of access (foot care, insulin pumps) Education (patients, (healthcare professionals) Patient experience A survey was developed and shared in autumn Respondents were asked 10 questions. Half of the questions sought to understand details about the individual respondents themselves; whilst the other half requested specific information about the support they received or needed. Free text sections were included for greater insight on their diabetes management and personal experiences. This report provides an analysis into the responses received by the 2014 diabetes patient experience survey and the support needed in London. Individual information The survey was aimed at gaining insight from people with diabetes living in London. As the survey was shared online via various social media channels, some responses were received from those living outside of the capital. Although these responses will be considered and used to understand the wider picture, they were disregarded from this specific analysis. Incomplete surveys (in which certain questions were left blank) were included in this analysis. Type - There were 203 responses from London. Of those, 62.5 per cent of respondents have been affected by type 1 diabetes, 35 per cent by type 2 diabetes, and the rest didn t know (2.5 per cent). Link with diabetes - The majority of respondents (82 per cent) indicated that they themselves were living with diabetes, while 14 per cent knew someone who had diabetes (my child, with 8 per cent, and I m a carer, with 6 per cent). Age - The greatest response rate was from those aged (24 per cent) followed closely by those years old (21 per cent). Time since diagnosis - When asked how long they have been living with diabetes, the largest response was 20 years or more (28 per cent) followed closely by those diagnosed 2 to 5 years ago (24 per cent). Support Five questions probed how respondents viewed support access, what was received, what was needed in order to understand what is beneficial to people in managing diabetes on a day to day basis. Professional support- When asked for their preferred source of professional support for diabetes management, almost half of the respondents identified the hospital (48 per cent), followed by the GP (28 per cent). Diabetes support for patients: Survey results 2 August 2015

3 However, diabetes type influenced this response. When broken down, we found that a large majority of those with type 2 diabetes identified their GP as the primary source of professional support (62.5 per cent) followed by the hospital (11 per cent). Conversely, those with type 1 diabetes overwhelmingly chose the hospital (70 per cent) followed by the GP (10 per cent). Additional support - Other sources for accessing additional support and advice regarding living with diabetes found online forums a popular choice (58 per cent), diabetes patient forums (45 per cent) and real life contacts, such as friends and support groups (17 per cent). Like the professional support source, this response varied when analysed by diabetes type. For those living with type 1 diabetes, online forums were the preferred choice for additional support (68 per cent) followed by diabetes patient forums (44 per cent), while those living with type 2 diabetes preferred diabetes patient forums (48 per cent) followed by online forums (36 per cent). Range of support - Respondents were asked to rate the level of support available to them in helping them live with diabetes, on a range from not nearly enough to so much I get confused. Approximately one-third felt the level of support was about right (35 per cent), though this was closely followed with not nearly enough (24 per cent) and almost enough (23 per cent). Again, variance existed when analysing according to diabetes type. Those living with type 1 diabetes felt levels of support were about right (38 per cent), with fewer numbers indicating almost enough (27 per cent) and not nearly enough (18 per cent). Those living with type 2 diabetes felt equally that there was not nearly enough support (38 per cent), followed by about right (32 per cent) and almost enough (18 per cent). Open ended questions Qualitative data was obtained through free text areas in which respondents could highlight elements of support for individuals in managing and coping with diabetes, as well as specific things that should be included or eliminated. The tables which follow provide greater detail into these responses. We have themed these responses and listed according to the frequency of mention. Diabetes support for patients: Survey results 3 August 2015

4 What helps you the most in managing or coping with your diabetes? (People, places, groups, things whatever works!) Within the themes listed below, those with less than five responses have been excluded. Type 1 responses Support source Diabetes specialist nurse 28 Diabetes peers (others 21 living with diabetes) Family / friends / partners 20 Self-management 17 Hospital* 12 Internet 11 Social media 10 Consultant 9 DAFNE 7 Information 7 Diabetes pumps 5 Groups 5 I wish my family were at least half as helpful as my diabetes team. Still haven t really found a coping mechanism to keep my diabetes under control. Nothing helps, as I don t cope. I have no support. There is not enough support as with all the cuts there aren t enough diabetic nurses. *Responses indicating Hospital did not specify which particular element or role. Type 2 responses Support source GP 10 Self-management 9 Diabetes UK 6 Diet 6 Diabetes specialist nurse 5 Peer groups 5 w I m not coping with my diabetes at the moment. Advice would be useful. Insight / observation The open ended responses supported the earlier responses, showing a difference in the source of professional support preferred between those with type 1 or type 2 diabetes. Those with type 1 still preferred hospitals, whereas those with type 2 preferred primary care, or their GP. Those with type 1 diabetes highly scored the support from their family, partners and friends. Interestingly, this wasn t identified in the earlier support question, where those with type 1 preferred to access support from either online forums or diabetes patients forums. Conflicting findings were similarly reflected in those with type 2 diabetes. One-quarter of those with type 2 diabetes felt overall that there was not nearly enough support when asked to describe the level of support available, though this did not appear to be reflected Diabetes support for patients: Survey results 4 August 2015

5 overall in the free text comments, where only two respondents commented critically. Of interest those with type 1 diabetes who felt that overall the level of support available was about right were more critical of the levels of support than their peers with type 2 diabetes. For both types, self-management was frequently mentioned, though more so in the type 2 population. That same group viewed Diabetes UK as a valuable support agency to those living with diabetes whereas those with type 1 diabetes seemed to favour the internet and social media neither of which were mentioned in the responses by those with type 2 diabetes. What are you missing to help you manage and cope with diabetes? What would you like more of? As before, responses were grouped according to themes and listed in order of mention. The answers to this question varied widely, and were thus more difficult to categories. Type 1 responses Response Technology 4 Psychological support 3 Information 3 Advice 3 More support 2 Nothing needed 2 Mental health no one seems to care. More understanding of emotional impact. Day to day support. I feel very alone with my disease. Someone who cares. Type 2 responses Response Nothing 6 Advice 3 Information 3 Healthy foods 2 Support 2 Someone to talk to who understands it. Acceptance. Fix for my depression. Treat me as an individual with multiple medical conditions not just as a diabetic. Insight / observation Type 1 - A call for more accessible technology scored the highest followed by groups of psychological support, information, advice and support. At least two respondents felt that nothing was needed. Type 2 - As with the type 1 responses, those living with type 2 diabetes also highlighted the need for information, advice, and support. There was a much higher response from this group stating that nothing was needed. Responses from both groups appeared to indicate a need for additional assistance including psychological support and information / help. Diabetes support for patients: Survey results 5 August 2015

6 Conclusion While the response size was relatively small in comparison to the total diabetes population of London, the findings do give the London Diabetes Patient Experience working group some areas upon which to focus their attentions. The findings also show that there are clear disparities between those living with type 1 diabetes and type 2, the level of support which is required, how it is accessed, and whether it is successful. The learning for the group is that separate strategies may need to be developed based on diabetes type. Given the findings above, it may be worth prioritising those with type 2 diabetes for support needs, as almost 40 percent stated that there was not nearly enough support for them. It also suggested the membership of the London Diabetes Patient Experience working group should be more reflective of both type 1 and the type 2 diabetes communities. Diabetes support for patients: Survey results 6 August 2015