Diabetes in Scotland - Diabetes Education Scotland

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Diabetes in Scotland Improving the health outcomes for younger people with diabetes: from education to engagement

"The roundtable meetings and the report have been supported by Novo Nordisk. The views expressed in this report are those of the roundtable participants and not necessarily those of Novo Nordisk."

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Foreword All over the world, younger people with diabetes are challenged by the demands of the disease, and their experience in Scotland is no different. In spite of service improvements in recent years and considerable progress in insulin therapies and diagnostics support, health outcomes for younger people in Scotland with type 1 diabetes are not showing any significant improvement. For some, complications manifest themselves in their early twenties, sometimes with alarming consequences. The Round Table was keen to see what it could do to identify ways in which younger people could be further supported in trying to improve their health outcomes. We had the advantage of hearing from four young people whose unique experiences informed the discussions of the Round Table. The Scottish Diabetes Group has helped to introduce improvements in a number of areas of support and service, and this is most welcome. It was however natural that the Round Table should want to see how more could be done, particularly for younger people, while at the same time acknowledging the current pressures on health service budgets. It was encouraging to see the innovation in services, particularly in the area of psychosocial support, and the diversity of provision is to be welcomed. But it can never be right that services, and access to them, are more available in different parts of Scotland, and it is a natural aspiration of the diabetes community that the best should be available to all. It was interesting too to have Søren Skovlund’s presentation on the international DAWN2 Survey, confirming the significant impact of diabetes not only on the person but on his or her family, in Scotland as elsewhere. The recommendations in this Report are offered as a contribution to the debate and discussion about what can practicably be done to help younger people live with their diabetes and achieve better health outcomes. Investing in the securing and maintenance of their good health not only improves their quality of life, but is a seriously worthwhile investment for NHS Scotland. We are most grateful to those who gave evidence to the Round Table, and to those who provided written evidence. I am particularly grateful to those who served as members of the Round Table and whose passion and commitment to making things better for young people with diabetes was inspirational. Thanks are also due to Lynda Gauld, Lorna Saunders and Rob Mackie for organising the Round Table and drafting the Report. On behalf of the Round Table, I also thank Novo Nordisk for the unrestricted grant to enable the Round Table to take place. And I remain personally deeply grateful to the doctors and healthcare professionals who work devotedly to help Scotland’s younger people with diabetes to have the best possible health and quality of life.

Sir Michael Hirst President International Diabetes Federation

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Welcome

Sir Michael Hirst and Nanette Milne MSP

As one of the co-convenors of the Cross Party Group on diabetes at the Scottish Parliament, I was delighted to be able sponsor these meetings. I was most impressed by the commitment of all those who attended and wish to play particular tribute to the young people with diabetes who came to share their personal experiences with us. Diabetes presents a challenge to the NHS and to service providers tackling the clinical aspects of the condition, but it is a particular challenge to those who live with it and no more so than during the transition from paediatric services to adult services; taking place, as it does, at a time of significant changes for them. To hear how this transition affects them was most insightful and invaluable to the objectives of the meetings, and to the findings of this Report. I encourage the Scottish Government Health Directorate to read this Report and to take on board the recommendations made which, if implemented, will make a positive difference in supporting people living with diabetes and their families, and in particular will help to ease the burden of the condition during the difficult period of transition.

Nanette Milne MSP

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Contents The Round Tables ................................................................................................................................. 6 The remit of the meetings .................................................................................................................... 7 Discussions............................................................................................................................................ 9 A national overview of service development and provision .............................................................. 9 how health outcomes can be improved for all young people, particularly those who disengage from service provision.............................................................................................................................. 14 An understanding of the role of psychosocial support and the evidence to support this. ............... 18 The role of peer support and youth engagement programmes in assisting young people with diabetes .......................................................................................................................................... 21 Recommendations .............................................................................................................................. 23 Conclusion .......................................................................................................................................... 25 Appendix 1 ...................................................................................................................................... 26 Appendix 2 ...................................................................................................................................... 29

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Introduction “Life expectancy is reduced on average by 20 years in those with type 1 diabetes and up to 10 years in type 2 diabetes.”1 Diabetes mellitus, recognised by a raised blood glucose level, is the most common disorder of metabolism. 258,570 people, or one in twenty-five of the Scottish population, have been diagnosed with the condition, and an estimated 20,000 remain undiagnosed2. According to the Diabetes Action Plan 2010 – Quality Care for Diabetes in Scotland 3 there are two main types of diabetes described as: 

Type 1 diabetes, which develops when there is a severe lack of insulin in the body because most or all of the cells in the pancreas that produce insulin have been destroyed. People with type 1 diabetes therefore need to inject insulin from the time of diagnosis. Type 1 diabetes is one of the most common long term conditions affecting children and adolescents in Scotland, which has one of the highest prevalence rates of type 1 diabetes in Europe. 4 In Scotland 28,849 people have type 1, an increase of 9.7% since 2006.5



Type 2 diabetes, which develops when the body can still produce some insulin, though not enough for its needs, or when the insulin that the body produces does not work properly. Type 2 diabetes usually appears in people over the age of 40 and its rise in prevalence is closely linked to rising obesity levels, an ageing population and reduced activity. Most people with type 2 diabetes manage to control blood glucose levels with lifestyle changes and oral medication, but some may also require insulin therapy. In Scotland 227,967 people have type 2.

The 2012 Scottish Diabetes survey reported that 4.9% of the population has diabetes, compared to 4.76% among the general practices in England and Wales (88%) that participated in the National Diabetes Audit for 2011-2012 (NDA).6

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Scottish Public Health Observatory 2013 – Diabetes: Introduction Ibid - Diabetes: undiagnosed diabetes 3 Diabetes Action Plan 2010 - Quality Care For Diabetes In Scotland 4 ibid 5 ibid 6 National Diabetes Audit 2011–2012 2

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The Round Tables The Round Table meetings were held in association with Dr Nanette Milne MSP, one of the coconvenors of the Cross Party Group on Diabetes at the Scottish Parliament, also a member of the Health and Sport Committee. They took place on 26 June, 10 September and 10 October 2013 in the Scottish Parliament. These meetings and the production of this Report were funded by Novo Nordisk and brought together key stakeholders involved in the care of people with diabetes, including those specifically involved in the provision of psychosocial support services and those responsible for the management of the diabetes services, clinical practitioners, advocacy services and people living with diabetes, including young people in the transition phase between paediatric and adult services. • •

Attendees at the meetings are contained in Appendix 1 Written submissions for inclusion and debate are listed in Appendix 2

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The remit of the meetings In recent years there have been a number of policy initiatives and drivers aimed at improving the quality and provision of care for those with diabetes, as well as managing the impact of the disease on those with the condition now and into their futures: The Diabetes Action Plan 20107, diabetes clinical standards published by NHS Quality Improvement Scotland, October 20028; the criteria in the diabetes domain of the Quality and Outcomes Framework9 (QOF) in the new General Medical Services (GMS) contract; and Scottish Intercollegiate Guidelines Network Guideline (SIGN) 11610 on the management of diabetes. A number of these initiatives have included elements specific to the issue of education for the person with diabetes, their families and for service providers and additionally, the specific issue of transitioning from paediatric to adult services. However, SIGN Guideline 11611 makes the following Grade A recommendation: “Children and adults with type 1 and type 2 diabetes should be offered psychological interventions (including motivational interviewing, goal setting skills and Cognitive Bahavioual Therapy (CBT)) to improve glycaemic control in the short and medium term.” In recent years, a number of studies have demonstrated the link between chronic illness, diabetes in particular and mental ill health, including stress and depression: “Patients with diabetes suffer high rates of mental health problems, and this combination is associated with poor outcomes. Although effective treatments exist for both diabetes and mental health problems, delivering services for physical and mental health problems separately ignores their interaction and may be inefficient.” 12 In light of these initiatives and policy drivers and many other on-going activities; including, for example, the work of Diabetes UK13, the three Round Tables were structured to address the issue of accessing psychosocial support. In the course of the first meeting, time was taken to consider the shape of the future two meetings, the issues for discussion and the key stakeholders to be invited to address these.

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Diabetes Action Plan 2010 - Quality Care For Diabetes In Scotland NHS Quality Improvement Scotland, Clinical Standards for Diabetes (2nd ed) Edinburgh, 2002 9 NHS Quality Outcomes Framework 10 SIGN Guideline 116; Management of Diabetes 11 Ibid; 2.2 Psycho-social Factors 12 Identifying Psycho-social Interventions That Improve Both Physical and Mental Health in Patients With Diabetes: A systematic review and meta-analysis: Elaine Harkness, Wendy Macdonald, Jose Valderas, Peter Coventry, Linda Gask, Peter Bower: Diabetes Care. 2010 April; 33(4): 926–930. doi: 10.2337/dc09-151 13 http://www.diabetes.org.uk/ - accessed 11/11/2013 8

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It was agreed, as a consequence of the discussions during this first meeting, that there is an issue with continued engagement with service provision, particularly by those going through the crucial period of transition and the need for peer support. Another area discussed and considered necessary for inclusion into future meetings was that of emergency care by the Scottish Ambulance Service (SAS), particularly with regard to recording and sharing details of care provided at the time of a critical incidence, such as hypoglycaemic episodes. It was also agreed by those present that it would be important to understand and to hear about the current national overview of development in terms of the policy drivers and the impact on care provision. At the conclusion of the first meeting it was agreed that the further two meetings would include oral evidence sessions and address the following key areas:    

A national overview of service development and provision An understanding of the role of psycho-social support and the evidence to support this How health outcomes can be improved for all young people, particularly those who disengage from service provision The role of peer support and youth engagement programmes in assisting young people with diabetes

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Discussions A national overview of service development and provision At the first meeting on 26 June 2013, the issue of service development and provision at a national level was considered to be a key area for subsequent discussion. Accordingly, Mr Steve Birnie, National Paediatric & Adolescent Diabetes Coordinator, was invited to outline the ongoing work of the Scottish Diabetes Group’s Childhood & Adolescent Diabetes Scotland subgroup; a group comprising multidisciplinary representation of healthcare professionals from around Scotland involved in delivering diabetes care to children and young people with diabetes. Whilst there have been very welcome advances in some aspects of service development for young people, notably in respect of the provision of insulin pumps, with the Scottish Government stating: “……… a quarter of young Scots with type 1 diabetes must have access to insulin pumps by March 2013, and by March 2015, the number of insulin pumps available to people of all ages with type 1 diabetes in Scotland will almost triple to more than 2,000.”14

Much still remains to be done and Mr Birnie outlined the key areas for his role as:        

To review services available for young people with diabetes in Scotland Adolescent transition – support for the development of a strategy for Scotland Diabetes in Schools – develop an ‘Expectations of Care’ document The Scottish Care Information (SCI)-Diabetes Paediatric Screens – support development, implementation and usage National support materials – develop a national set of patient education materials Use of data – support the creation of a paediatric data policy and look at how it could be used to support service development Provide a central hub for people to put information, good practice and useful material that others can access Look at how technology could help young people engage better with healthcare

It was agreed in the subsequent discussions that adolescent transition is a key area with recognition of the need to address what exactly is the period covered by transition

14

http://www.sehd.scot.nhs.uk/mels/CEL2012_04.pdf

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A review of current services15 demonstrates that the majority of clinics addressing adolescent transition cover the 14-16 age group although this varies. There was a suggestion that discussions about what the process will involve should start earlier at aged 11 or 12 and continue for approximately five to six years; in other words, the period of secondary school education. Recent information has suggested that disengagement from services is more likely in the midtwenties, not at the adolescent period and that there is a challenge for all concerned in ensuring service provision addresses not just the clinical needs, but reflects the lifestyles and fluctuating life circumstances for these young adults. This fits with recent research demonstrating that the structure of the brain shows a prolonged development until early adulthood16. However, on reviewing current service provision,17 it was found that in Fife they already have a ‘young person’s clinic’ covering from age 15-25, while the one at Gartnavel General Hospital set up by Dr Mike Small has been running monthly since 2000. It was agreed that as well as adolescence, early adulthood was also considered to be a period requiring additional support and that this was the time to develop resilience and life skills, leading to a particular type of self management. Studies show that during adolescence individuals become increasingly independent and responsible for their own actions, are increasingly faced with situations that test the limits of their ability to regulate their behaviour, and are required to make more consequential decisions that may seriously impact their current or future health. 18 19 20 21 At the other end of the spectrum, enhanced youth self-regulation is associated with a variety of positive outcomes in adulthood, including improved physical health. 22 Indeed, work has already been undertaken to address some aspects of this by the Diabetes in Scotland subgroup, Diabetes Education Advisory Group,23 comprising multidiscipline representation of health care professionals from around Scotland involved in delivering diabetes care and with an interest in diabetes education. With the development of a dedicated website24 which hosts a whole range of resources to support self management and education on diabetes as well as signposting people to other links with appropriate information and the establishment of Children and Young People's Services Managed Knowledge Network25 by NHS Education Scotland, the Diabetes Education Advisory Group has made progress in helping healthcare professionals and young people with diabetes gain a greater understanding of self-management of diabetes. 15 16

Scottish Paediatric & Adolescent Diabetes Directory 2012 – accessed 17 October 2013

Giedd JN & Rapoport JL (2010). Structural MRI of pediatric brain development: what have we learned and where are we going? Neuron, 67:728-734 17

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Scottish Paediatric & Adolescent Diabetes Directory 2012 – accessed 17 October 2013 Christie D & Viner R (2005) Adolescent development. British Medical Journal, 330:301‐304.

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Sebastian C, Viding E, Williams KD, Blakemore SJ (2010). Social brain development and the affective consequences of ostracism in adolescence. Brain and Cognition, 72:134–145. 20

Steinberg L (2005). Cognitive and affective development in adolescence. Trends in Cognitive Sciences, 9:69‐74.

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Borse NN, Gilchrist J, Dellinger AM, Rudd RA, Ballesteros MF, Sleet DA (2008). CDC Childhood Injury Report: Patterns of Unintentional Injuries among 0 -19 Year Olds in the United States, 2000--‐2006. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. 22

Moffitt, TE, Arsenault, L, Belsky, D, Dickson, N, et al. (2011) A gradient of childhood self-control predicts health, wealth, and public safety. Proceedings of the National Academy of Sciences, 108: 2693‐2698. 23

http://www.diabetesinscotland.org.uk/Groups.aspx?catId=C2 – accessed 04 November 2013 http://www.diabeteseducationscotland.org.uk/ – accessed 04 November 2013 25 http://www.knowledge.scot.nhs.uk/child-services.aspx– accessed 04 November 2013 24

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It was acknowledged that this was also a transition period for the parents of young people with diabetes and that for them there needs to be a strategy for ‘letting go’. A key area for discussion was that of data collection, sharing and usage. It was felt that information gathering could play a major part in understanding disengagement from services by some young people with diabetes. “In order to make an impact with health outcomes it is important that you have the facilities to collect accurate information and can interpret this in the right way to provide the basis for changes that will improve patients’ lives.” Until recently gathering and collecting data for young people with diabetes has been difficult without a single system facility. However, as Mr Birnie outlined, the development of SCI-Diabetes addresses that difficulty. “Scotland has a diabetes data system that is the envy of other countries and translating that information into actions that individuals, units and health boards can take on board will drive up standards of care and health outcomes.” However, although there was universal agreement on the need to share data, including with the people with diabetes and the psychosocial professionals, there was recognition that data sharing can be challenging for some healthcare professionals. “….the challenge is bringing the healthcare professionals in, as some find shared decision making and target setting hard to get to grips with.” Mr Birnie outlined the development and provision of a range of materials to support young people with diabetes and their families, as well as for healthcare teams. For example, ‘My Diabetes My Way’,26 the NHS Scotland interactive diabetes website to help support people who have diabetes and their family and friends was highlighted and it was agreed that these could be applied to young people undergoing similar transitions with other long-term conditions. There was widespread acknowledgement that the role of schools and the part played by the local authorities in supporting schools is crucial. The experiences of those young people participating were varied and inconsistent. Mr Birnie talked about the work currently ongoing to develop a consensus document outlining the basic expectations of care for a child with diabetes. The aim of this is to make clear the roles and responsibilities of all those involved in supporting a child in school. Previous guidelines issued in 200127 set out to clarify the respective responsibilities of the health service and education authorities and schools on managing health care in schools. In 2012 these guidelines were evaluated by Tam Baillie, Scotland’s Commissioner for Children and Young People 28. This report concluded that:

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http://www.mydiabetesmyway.scot.nhs.uk/ - accessed 121/11/13 The Administration of Medicines in Schools – accessed 17 October 2013 28 The administration of medicines in schools - Report on FOI responses – accessed 17 October 2013 27

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“….there is some good practice across Scotland with regard to the administration of medicines in schools. There is however, a great deal of variation. This is particularly apparent in the area of involving children in decisions affecting them and around consent. Overall, the policies appear to have a limited focus on the rights of children and young people, yet there is an increasing emphasis on minimising the effect of disability on children’s lives and their opportunities for participation more broadly as well as a better awareness of children’s rights. All local authorities indicated that the administration of medicines in schools is done on a voluntary basis and stress that there is a legal duty to do so, but on the information received, there appears to be a much more facilitative approach from some local authorities than others, perhaps best reflected in the attitudes towards training.

Many of the policies and procedures rely heavily on the 2001 Guidance and in some cases this forms most of the policy. There have been a number of significant changes to policy and legislation since 2001, as well as current thinking on self-administration. It is suggested that it may be appropriate to review this guidance to reflect this.”

This report by Scotland’s Commissioner for Children and Young People and the findings of a recent Additional Support Needs Tribunal29 which criticised North Lanarkshire council and highlighted that the Equality Act 2010 includes a duty on schools to make reasonable adjustments for disabled pupils. Since September 2012, that has included a duty to provide auxiliary aids and services, where required, suggests that there is scope for clarification in respect of the role of those involved in supporting children and young people with diabetes in schools, and the development of the document referred to by Mr Birnie is both timely and relevant. Whilst addressing the issue of national service provision, it was considered relevant to invite to the round table representatives from the Scottish Ambulance Service (SAS) to provide an understanding of their service in the case of unscheduled and emergency treatment provision. In the course of the second Round Table meeting, representatives from the Nursing, Midwifery and Allied Health Professions Research Unit (NMAHP RU), funded by the Scottish Government's Health Directorates, Chief Scientist Office, David Fitzpatrick and Dr Edward Duncan attended to address the concerns raised about data recording at the time of emergency treatment. They firstly outlined their current research looking at pre-hospital post-hypoglycaemic care in patients with diabetes. Mr Fitzpatrick informed those present that approximately 70% of people treated at the scene of a call out are not transported to hospital (data from 2007/08). It was his view, and that of the ambulance service, that it was essential to encourage follow-up care after recovery. However their recent research suggests that many patients appear not to value follow-up care and there was evidence that some may be experiencing a degree of cognitive impairment after an event. Patients may therefore require additional or other methods to encourage follow-up. They have recently developed and tested a patient-centred intervention delivered by ambulance clinicians to encourage 29

http://www.diabetes.org.uk/upload/Scotland/Wyper%20Decision-1.pdf

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follow-up care. He did go on to say that there was work ongoing to explore how their electronic patient records (which would include data on hypoglycaemic attacks) could be shared with patient’s General Practitioners via an NHS24 system. He stated that there is a desire by the SAS to seek consent from those treated and for them to provide the relevant data to enable such sharing. A small pilot is ongoing in one health board area that enables the uploading of ambulance electronic patient report forms to a GP database. There was some discussion regarding the need for patient confidentiality when being treated by the Scottish Ambulance Service. Currently patient consent is sought prior to sharing any clinical information, and it is envisaged that this process will continue. This is in keeping with other organisations’ requests to share patient information with Primary Care services (e.g. NHS24). Some clinicians in attendance stated that they would very much like to have knowledge of such insistences, and particular concern was expressed about the perceived concealment of hypoglycaemic attacks from healthcare professionals. However, there was recognition that those who choose to conceal such attacks will do so, irrespective of the intervention of SAS and that only 10% of such severe events involve an ambulance call out. Nonetheless, it was agreed that any improvement, which could allow for increased collecting and sharing of data regarding such episodes, would be welcomed and would be in line with the overall aim of the aforementioned data collection initiative for diabetes services in Scotland.

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How health outcomes can be improved for all young people, particularly those who disengage from service provision An early aim of the Round Table meetings was to consider the issue of ‘patient education’. However, in the course of the first meeting it was agreed that this focus should be looking more at engagement than education. Indeed, as Mr Birnie highlighted, the transition period of adolescence and early adulthood is the time when people living with diabetes are most likely to disengage from services. There was discussion around how to define ‘disengagement’ and there was agreement that this was more than just not attending clinic appointments. A recent study30 found that only 13% of those reviewed in the dataset had HbA1c levels (a test that measures the blood sugar control over the previous 3 months) in the target range. Given the importance of tight blood sugar control for minimizing complications from diabetes has been understood for almost two decades, there is an urgent need to understand why so few people with type 1 diabetes have good control of their blood sugar, and what can be done to improve this situation. Evidence provided by Dr Tim Lawes31 demonstrates the importance of early HbA1c in determining long-term glycaemic control and suggests that optimising early management should be an important goal for all children diagnosed with type 1 diabetes. It was also shown that the longer the duration of poor glycaemic control, the harder it is to improve HbA1c.32 Therefore, early intervention may also provide an important target for improving outcomes in those at risk of deteriorating or poor patterns of control. This is particularly important when looking at the issue of disengagement as indicators used to determine disengagement, particularly amongst the 15–30 age group were considered to be:  

Had not had their eyes screened, having ignored three letters over a 15 month period Had not had their HbA1c measured anywhere over a 15 month period

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Public Library of Science. "Serious complications in people with type 1 diabetes and ongoing poor blood sugar control." ScienceDaily, 2 Oct. 2012. Web. 17 Oct. 2013. 31

Lawes T, Franklin V, Farmer G. HbA1c tracking and bio-psychosocial determinants of glycaemic control in children and adolescents with type 1 diabetes: retrospective cohort study and multi-level analysis. [Submitted for Peer Review in Pediatric Diabetes 32 Kim H, Elmi A, Henderson CL, Cogen FR, Kaplowitz PB. Characteristics of Children with Type 1 Diabetes and Persistent Suboptimal Glycaemic Control. J Clin Res Paediatr Endocrinol. 2012; 4(2):82-88.

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It was acknowledged that there is a proven correlation between age at diagnosis and ongoing engagement/disengagement with services. For example, those diagnosed at a young age are less likely to attend for eye screening while the peak age for laser therapy is 30-35 years. However, the younger a person is at diagnosis, the earlier they will have had an HbA1c reading. Those who have not had HbA1c readings in recent years will be at increased risk of complications. 33 34 In line with the previous findings, disengagement is most likely at periods of transition coinciding with significant life changing events for young people. NG, a young man diagnosed with type 2 diabetes at 16 addressed the meeting. He spoke of how he was diagnosed just at the time of sitting his exams. He said that he initially took the diagnosis and the subsequent lifestyle changes very seriously, particularly whilst at school. Moving to university was the catalyst for change for him and at this point he began to disengage from services, stopped medication and stopped adhering to the lifestyle changes required of him to maintain his condition. NG was focussed on his new challenges and his new social life and didn’t want to be going to clinics. This is in line with recent studies which show that during the transition from childhood to adolescence, relationships with peers become increasingly elaborate, more personal and emotional35 and that during this time adolescent decision-making is particularly influenced by peers.36 37 38 Not only does the quality of relationships with peers change, but the frequency of these interactions also increases as adolescents spend more time interacting with their peers than their families.39 40 He was made acutely aware of the potential implications for him when he encountered a 50 year old man, also type 2, who had already undergone a leg amputation. This man told NG that he wished that he had been aware of the potential dangers of the complications whilst still young. He felt that, had he been made more aware, he may not have required an amputation. This had a significant impact on NG and made him acknowledge that his condition was tangible and that he needed to address his diabetes to prevent him reaching that point. “…it was my attitude that led to me disengaging; I was stubborn and thought that my diabetes was intangible, something that didn’t really exist and that I didn’t have to deal with. I wanted to live a normal life and not have to be different” 33

Diabetologia (2013, September 24). Social deprivation a key factor in mortality in type 1 diabetes. ScienceDaily. Retrieved October 17 34 Public Library of Science. "Serious complications in people with type 1 diabetes and ongoing poor blood sugar control." ScienceDaily, 2 Oct. 2012. Web. 17 Oct. 2013. 35

Brown BB (2004). Adolescents’ relationships with peers. In L Steinberg & RM Lerner (Eds.), Handbook of Adolescent Psychology (pp.363–389). John Wiley & Sons, Inc. 36 Steinberg L & Morris AS (2001). Adolescent development. Annual Review in Psychology, 52:83-110. 37 Sebastian C, Viding E, Williams KD, Blakemore SJ (2010). Social brain development and the affective consequences of ostracism in adolescence. Brain and Cognition, 72:134–145. 38 Sebastian CL, Tan GCY, Roiser JP, Viding E, Dumontheil I, Blakemore, S-J (2011). Developmental influences on the neural bases of responses to social rejection: Implications of social neuroscience for education. NeuroImage, 57:686–694. 39

Brechwald WA & Prinstein MJ (2011). Beyond homophily: A decade of advances in understanding peer influence processes. Journal of Research on Adolescence, 21:166–179. 40 Brown BB (2004). Adolescents’ relationships with peers. In L Steinberg & RM Lerner (Eds.), Handbook of Adolescent Psychology (pp.363–389). John Wiley & Sons, Inc.

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This attitude is in line with an identified propensity for risk-taking during adolescence known as the ‘dual systems’ model.41 There was acknowledgement that attending clinics to have various routine investigations carried out can be time-consuming and it was highlighted that, at least in NHS Ayrshire and Arran, it had previously been possible to have all interventions undertaken in the course of one appointment, a sort of ‘one-stop-shop’ approach. However, due to the restructuring of services which was

brought on by services pressures, this was no longer possible. Taking time off from work and school was seen as an issue; not merely the time resource, but that to have to do so relatively frequently contributed significantly to the stigma associated with living with diabetes, the not having a ‘normal life’. It was also felt by those young people with diabetes in attendance that it would be easier and more normalising if appointments could be carried out in primary care rather than at hospital clinics. Stigma was a key issue for all those with diabetes who attended the meetings; NG stated that he felt this as a consequence of not fitting the stereotypical profile for type 2 diabetes - obese and middle aged – and, in contrast to a fellow pupil at school with type 1 diabetes, he was not as well supported and his wellbeing was considered of lesser importance. Those with type 1 diabetes also spoke of feeling stigmatised by peers and contemporaries, they said that they felt that their condition marked them out as different; the need to self-inject and/or wear a pump highlighted how they are not the same as classmates. The young people with type 1 diabetes said that the ‘luxury’ of opting out from their condition, to the extent described, was not possible for them. “Young people with type 1 diabetes don’t get to disengage from their disease and only worry about the future - we don’t have that luxury, we would be dead within a matter of weeks. We cannot disengage from our condition.” There was some discussion about the role of the family, and of parents in particular, in such disengagement. Although it was recognised that they may well be aware of this change, this was most likely, like NG, to take place at a time of developing independence and a degree of rebellion as demonstrated in recent research. 42 43 As suggested in this research, it would be most unlikely for the young person concerned to respond to any intervention by family and parents. The role of the healthcare professionals in maintaining engagement by young people in particular was considered, and it was felt that this was an area where psychosocial professionals could assist, both in terms of engagement of the young person themselves and helping healthcare professionals better understand the young person and their motivation. Much of the discussions regarding disengagement came from the perspective of the healthcare professionals and service providers and focussed on the implications of failure to attend 41

Casey BJ, Jones RM, Hare TA (2008). The adolescent brain. Annals of the New York Academy of Sciences, 1124:111–126.

42

Brown BB (2004). Adolescents’ relationships with peers. In L Steinberg & RM Lerner (Eds.), Handbook of Adolescent Psychology (pp.363–389). John Wiley & Sons, Inc. 43

Brechwald WA & Prinstein MJ (2011). Beyond homophily: A decade of advances in understanding peer influence processes. Journal of Research on Adolescence, 21:166–179

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appointments for clinical interventions and the increased risk of complications. However, as stated previously, some of the young people spoke of how difficult it is for them to disengage entirely, particularly those with type 1 diabetes and that some of the language used by clinicians was hard to take on board: “Young people, who are out in the real world, dealing with real world problems and too often feeling isolated and alone with their diabetes were referred to as ‘offenders’ because they couldn’t take time out of their real life to come and see a doctor – sadly many ‘offenders’ will associate doctor’s visits with being patronised and misunderstood.” As highlighted previously, the need to take time out from their ‘real life’ to attend appointments is not only logistically difficult, but it also reinforces the sense of stigma felt and as identified in the aforementioned research, runs counter to the natural inclination of young people, irrespective of any diagnosis.44 However, as previously mentioned, well-managed glucose control reduces the risk of complications in later life. 45 The challenge for clinicians and other healthcare professionals is to strike the balance between clinical governance and intrusion into the lives of people living with diabetes, in particular, those young people at that time of transition. Reciprocal understanding and good communication were highlighted as key to this: “We, as young people with type 1 are in the hands of older decision-makers, who struggle to see the world from our perspective. They have a responsibility to represent our interests, so it is imperative they understand what our interests are. The only way to do this is to communicate with us and listen to what we say.”

44

Sebastian C, Viding E, Williams KD, Blakemore SJ (2010). Social brain development and the affective consequences of ostracism in adolescence. Brain and Cognition, 72:134–145. 45

Public Library of Science. "Serious complications in people with type 1 diabetes and ongoing poor blood sugar control." ScienceDaily, 2 Oct. 2012. Web. 17 Oct. 2013.

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An understanding of the role of psychosocial support and the evidence to support this As discussed in the previous section, the need to support people with diabetes as a whole person can be crucial to their clinical wellbeing, and no more so than in the adolescent and young adult. The recent Scottish Diabetes Survey demonstrates the challenges faced by people with type 1 diabetes, particularly the 15-24 age group.46 In addition, recent work by NHS Highland47 shows that the close, bi-directional relationships between psycho-social stressors, impairments in self-management and parental support, and worsening glycaemic control, suggest that psycho-social support may be of particular benefit during periods in which HbA1c is high. In a paper to the Round Table discussions, Dr Andrew Keen, Consultant Health Psychologist, reported that a recent audit of diabetic ketoacidosis in NHS Grampian indicated that 50% of all admissions involved young people under 26 years of age. As previously discussed, young people face developmental challenges in terms of self-management and research illustrates why that might be. In addition, recent evidence demonstrates how this relates to living with diabetes.48 Dr Keen reported to the Round Table that a significant minority of young people with diabetes participating in the audit experienced clinical and subclinical levels of anxiety and depression, and that this is generally associated with a reduced ability to self-care. The findings of the audit by Dr Keen and his colleagues in Grampian are very much in line with the finding of the global DAWN™ study presented to the round table by Søren Eik Skovlund, Director, Patient Research, Novo Nordisk. This programme consists of three studies:   

DAWN™ (2001) DAWN™ Youth (2007) DAWN2™ (2012)

The findings of the recent DAWN2™ global study, which included 17,000 people with diabetes, their carers and healthcare professionals, 900 of which were from the UK, demonstrated that, globally, few people with diabetes receive psychosocial support. Of those participating, 38-46% reported not being asked if they were anxious or depressed in the previous 12 months. 49 However, the study also confirmed that depression is common in people with diabetes showing that, globally, 14% of those participating reported having likely depression. The UK data for this was slightly higher at around 17%.50

46 47

http://www.diabetesinscotland.org.uk/Publications/SDS%202012.pdf – accessed 22 October 2013

Lawes T, Franklin V, Farmer G. HbA1c tracking and bio-psychosocial determinants of glycaemic control in children and adolescents with type 1 diabetes: retrospective cohort study and multi-level analysis. [Submitted for Peer Review in Pediatric Diabetes 48

Lancaster, B.M., Pfeffer, B., McElligott, M., et al. (2010) Assessing treatment barriers in young adults with type 1 diabetes. Diabetes Research and Clinical Practice, 90, 243-249. doi:10.1016/j.dia bres.2010.07.003 49 Diabetes Attitudes Wishes & Needs. UK data 2012 50 Ibid

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The key findings presented from the study confirm that diabetes still poses a significant physical, psychological, and economic burden for people with diabetes and their families. Data presented showed that 46% of people with type 2 and 54% of those with type 1 reported emotional stress due to their diabetes. There was also evidence of the emotional impact on family members with 41% of family members of people with type 1 diabetes and 32% of family members of people with type 2 diabetes reporting a negative impact on their emotional wellbeing and 33% of type 1 family members reported a negative impact on their financial situation. 51 This confirms the experiences of family members who attended the Round Table meetings:

“The impact on the rest of the family (parents and siblings) is frequently dismissed or even worse ignored. The psychological impact impacts as a disease on the whole family unit, not just the diagnosed individual!” Søren also reminded the meeting of the previous DAWN™ Youth study in 2007, highlighting two key findings:52  

The rate of psychological problems, mainly major depression, in adolescents with diabetes is three times as high as amongst those without diabetes. By the age of 20, almost half of young people with diabetes are at risk of psychological problems.

The findings of the DAWN™ studies and those from the Grampian audit echo the recommendation from SIGN 11653: “Children and adults with type 1 and type 2 diabetes should be offered psychological interventions (including motivational interviewing, goal setting skills and CBT) to improve glycaemic control in the short and medium term.” A pilot project, PiD/PaD (Psychology in Diabetes/ Psychology and Diabetes) Project is currently ongoing in some parts of Scotland. It has been funded by the Scottish Diabetes Group to appoint five part-time psychologists (three half time in adult services and two quarter time in transition services) across Scotland for a period of three years. The two sites piloting the project in transition services are Lothian and Grampian. The aim of the transition pilot post-holders is to develop and support education for healthcare professionals, as well as be involved in direct work with young people and families. It is anticipated that lessons learned from these projects for best practice will be shared across Scotland. The long term aim is to:54 … establish a network of psychologists and clinicians working in diabetes across Scotland and ensure that psychologists become integral members of the diabetes multi-disciplinary team.”

51 52

Novo Nordisk Diabetes Attitudes Wishes & Needs. Data on file

Anderson, B. (2009), Psychosocial care for young people with diabetes. Paediatric Diabetes, 10: 3–8. doi: 10.1111/j.1399-5448.2009.00608.x 53 54

SIGN Guideline 116; Management of Diabetes http://www.diabetesinscotland.org.uk/Groups.aspx?catId=C12 – accessed 22 October 2013

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With representation from both transition-based pilot sites, Lothian and Grampian, discussions took place looking at the provision of psychological services for young people with diabetes in Scotland. It was noted from Dr Keen’s paper that whilst provision has improved considerably, there remain significant difficulties in accessing psychological support for people with diabetes. It was highlighted that for young people attending paediatric diabetic services, approximately 33% will have no access to a psychologist. Furthermore, in some areas, including the pilot sites, provision is funded for a temporary period only. Andy Gentil from Lothian PiD-PaD reported that the project had been successful to date and that emerging project outcomes are as follows: 

Availability of specialist mental health assessment and opinion during clinics has led to increased identification of significant mental health concerns in young people with poor metabolic control.



Reduced waiting times for intervention for young people identified as having significant mental health issues.



Increased access and reduced waiting times for psychotherapeutic interventions for young people with diabetes related distress or diabetes related family concerns



Embedding psychosocial wellbeing data, which increases discussion of non-metabolic factors underpinning and promoting self-management for individual young people.

A recent evaluation of psychological input to diabetes services carried out by Dr Keen, compared the current provision via the PiD-PaD project with data from a review in 2006.55 This evaluation has shown that whilst there has been an increase in the provision of psychological services, for paediatric services it is still only available in eight health board areas and for adult services in only five health board areas. The evaluation shows that there is limited availability at paediatric level and this drops significantly once young people have moved onto adult diabetes services. In addition, the majority of those are at risk of losing services in the near future as funding for the PiD-PaD posts will phase out. Despite the body of evidence demonstrating the benefits of psychosocial input to diabetic services, in particular for adolescents and young adults, the emerging outcomes from the PiD-PaD projects and the SIGN recommendation, psychological service provision for diabetic services in Scotland remains variable and under threat.

55

http://www.diabetesinscotland.org.uk/Publications/SDG%20Psychology%20report%202006.pdf

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The role of peer support and youth engagement programmes in assisting young people with diabetes It has been shown in a number of studies,56 57 DAWN™ included, that the role of peer support has a positive impact in terms of improvements in symptom management, diet, blood pressure, body mass index, and blood sugar levels. 58 A recent study59 suggests that for adolescents, the internet has become an important, trustworthy and valued tool to get information on various health-related issues that otherwise might be difficult to obtain. The authors also report that the need for contact with other adolescents with type 1 diabetes varied immensely. Some wanted contact with people like them and others wanted to be someone special. Some thought that the contact with other adolescents was the interesting issue, not having diabetes; they just wanted to be like everyone else. The most important thing about having a friend was the person; not that the person had type 1 diabetes. But it was valued that their friends knew about their diabetes if something happened. The role of peer support and its value for adolescents and young adults has been acknowledged by Diabetes UK (DUK)60 and along with a variety of existing material aimed at the 16-25 age group, they recently launched a project61 aimed at involving young people in volunteering with DUK Scotland to help inform them about the issues that affect this particular group. One such initiative is JustDUK1T, a website 62 created by young people with diabetes to support young people with type 1 diabetes across Scotland, and hopefully the UK. This resource represents a novel and effective way forward in supporting young people with type 1 diabetes and is seen as a model for youth engagement which could be adopted for young people diagnosed with other Long Term Conditions (LTCs). Another peer-led initiative, driven by people with type 1 diabetes discussed at the round table meetings was, Tay Teens, a Facebook initiative to encourage peer support between young people with diabetes. Like the JustDUK1T resource, this sets out to meet the needs of the adolescent/young adult group who are used to accessing internet and social media sites as a commonplace occurrence and, as has been shown,63 the role and importance of virtual, online communication and information provision is significant in this age group.

56 57

58

J. Pediatr. Psychol. (1995) 20 (4):449-476.doi: 10.1093/jpepsy/20.4.449 J. Pediatr. Psychol. (2012) 37 (5):591-603.doi: 10.1093/jpepsy/jss009First published online: March 29, 2012

Fisher EB, Boothroyd RI, Coufal MM, Baumann LC, Mbanya JC, Rotheram-Borus MJ, Sanguanprasit B, Tanasugarn C. Health Aff (Millwood). 2012 Jan;31(1):130-9. doi: 10.1377/hlthaff.2011.0914. PMID: 22232103 [PubMed - indexed for MEDLINE] 59

Nordfeldt S, Ängarne-Lindberg T, Nordwall M, Ekberg J, Berterö C (2013) As Facts and Chats Go Online, What Is Important for Adolescents with Type 1 Diabetes? PLoS ONE 8(6): e67659. doi:10.1371/journal.pone.0067659 60 http://www.diabetes.org.uk/How_we_help/Peer-support/ - accessed 22 October 2013 61 http://www.diabetes.org.uk/In_Your_Area/Scotland/Making-connections/ - accessed 22 October 2013 62 http://www.justduk1t.org.uk/ - accessed 22 October 2013 63 Nordfeldt S, Ängarne-Lindberg T, Nordwall M, Ekberg J, Berterö C (2013) As Facts and Chats Go Online, What Is Important for Adolescents with Type 1 Diabetes? PLoS ONE 8(6): e67659. doi:10.1371/journal.pone.0067659

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There was some discussion in the meetings around issues of confidentiality, safety and accuracy of information, as well as the part played by HCPs in respect of these new and emerging forms of communication and engagement. The concerns raised by HCPs have been highlighted in past studies,64 65 66 67 but a review68 of these and other studies found: “…..no negative effect or harm has been reported” The young people with type 1 diabetes in attendance at the meetings, and closely involved in the development and ongoing management of the online resources, discussed the support of clinic services in signposting to these and other such resources via the use of material such as ‘business cards’ given out at the clinics, and poster materials in clinic facilities. There was agreement that the instant nature of such communication mediums was helpful to young people in sharing their experiences of living with type 1 diabetes, an immediate effect in reducing the sense of isolation. Examples of the role played by social media in helping those previous ‘disengaged’ in becoming reengaged were cited and it was acknowledged that linkage between them and clinic services would play a big part in the added benefit of these resources.

64

Culver JD, Gerr F, Frumkin H. Medical information on the Internet: a study of an electronic bulletin board. J Gen Intern Med 1997;12: 466-70. [PMC free article] [PubMed] 65 Kelly W, Connolly V, Bilous R, Stewart A, Nag S, Bowes D, et al. Reader beware: diabetes advice on the web. Pract Diabetes Int 2002;19: 108-10. 66 Kim MS, Raja NS. Verbal aggression and self-disclosure on computer bulletin boards [report]. Hawaii, 1991: 1-19. 67 Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001;323: 1103-5. [PMC free article] [PubMed] 68 Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo, Anita Stern BMJ. 2004 May 15; 328(7449): 1166. PMCID: PMC411092

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Recommendations The recommendations which follow highlight some of the key areas for consideration discussed in these Round Table meetings. They are made in an effort to seek to address and improve the service provision for people with diabetes in Scotland, particularly those in the stage of transition, and support the aims of the Diabetes Action Plan 2010 and the progress report of April 2012 which states: “Action point 3.9.1 and 3.9.2 are the actions making the slowest progress and this is linked to the provision of psychology services in each area.” 1. The Diabetes Action Plan 2010 comes to an end in 2014 and it is recommended that a review of the progress of this is conducted and an updated Diabetes Action Plan is considered as a priority, addressing the areas highlighted in this report.

2. Diabetes Action Plan 2010 aims include: “Each diabetes MCN ensuring the provision of a range of education solutions, including quality assured structured education programmes to all people with diabetes. Each diabetes MCN undertaking/commissioning user impact and/or experience measures in relation to patient education.” The input from people with diabetes, and in particular young people, attending these meetings demonstrate that there is now a need to move beyond education and toward programmes which enhance and encourage engagement. It is recommended that future Diabetes Action Plans include objectives aimed at engagement and reciprocity and ensures the establishment of meaningful partnership with voluntary and third sector bodies, particularly in respect of those initiatives involving young people with diabetes.

3. PiD-PaD - The Scottish Diabetes Group committed £450,000 to funding the Psychology in Diabetes, Psychology and Diabetes project. This project is shortly due to complete in all the pilot sites resulting in a significant reduction in access to such support. A full impact evaluation of these pilots should be undertaken to allow for the positive outcomes to be fully assessed.

4. In line with the aforementioned evaluation of the PiD-PaD pilot project, continuance funding should be committed to enable SIGN Guidelines and Diabetes Action Plan 2010 aims to be met in full.

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5. SIGN Guideline – Evaluation of the implementation of recommendation 2.2 of SIGN Guideline 116. 6. Diabetes Action Plan 2010 aims include: “Each NHS Board, through its diabetes Managed Clinical Network( MCN), will develop, publish and show evidence of implementation of a transitional care plan with measurable outcomes identified and reported through the Scottish Diabetes Group by June 2011” There is a significant variation in the age range of adolescent services currently in place in Scotland with the majority covering a very small 14-16 age range. However, research suggests that the transition process extends beyond this period and recent reports that the peak age for disengagement is mid-twenties. We suggest that existing young people’s clinics be evaluated with an aim to extend transition to include this key period up to age 25 year and that service providers via MCNs work to incorporate locally developed peer support services for young people with diabetes. 7. Diabetes in schools – the development of the Expectations of Care document by the Childhood & Adolescent Diabetes Scotland sub group should be rolled out to all schools. In addition and in association with key local education leads this should be preceded by a full audit of understanding of legal duties by all bodies and agencies concerned and followed up with an evaluation.

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Conclusion Diabetes continues to present a challenge to NHS Scotland in terms of meeting the demands of clinical services and with regard to the financial impact on NHS Scotland budget. However, the greatest burden is borne by the people who live with diabetes and their families, and this is particularly the case for those young people making the transition into adulthood and into adult diabetic services. It has been demonstrated that adequate psychosocial support plays a significant part in helping people make this transition and self manage, but more can be done to ensure equal and continued access to psychological support in Scotland. We would encourage readers to consider the discussions of the Round Tables captured in this Report and to welcome implementation of the recommendations. Finally, we are grateful to all those who participated in the Round Tables, either by attending or by providing written submissions.

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Appendix 1 List of attendees First name

Surname

Role

Steve

Birnie

Paediatric & Adolescent Diabetes Co-ordinator

Alastair Emma

Brookes Cartwright

Professor Helen

Colhoun

Development Manager, JDRF Young Patient, member of Patient advisory group, NHS Tayside and founder of Tay Teens Professor of Public Health, University of Dundee

Dr Corrie

Darbyshire

Clinical Psychologist Diabetes Centre & Department of Paediatric Psychology Aberdeen

Dr Edward

Duncan

Dr Alistair Dorothy

Emslie-Smith Farquharson

Speaker 10 September : Research on Ambulance Service, University of Stirling Lead clinician NHS Tayside Person with Diabetes and Campaigner for insulin pumps

David

Fitzpatrick

Collette Victoria

Foord Franklin

Prof Brian

Frier

Dr Andy

Gentil

Nabeel Professor Stephen

Ghaffar Greene

Dr Alexandra

Greene

Senior Research Fellow in Medical Anthropology & Lead for Behavioural and Social Science Teaching Child Health, School of Medicine, University of Dundee Ninewells Hospital & Medical School, Dundee, Scotland, UK

Sir Michael David Dr Greg Jane Claire

Hirst Holman Jones Judson

Chair, President of IDF Parent of child with Diabetes Clinical Director , NHS Greater Glasgow & Clyde National Director Diabetes UK Scotland

Speaker: Research on Ambulance Service employed by the Scottish Ambulance Service but on permanent attachment to Stirling UNI research unit. Chair - Glasgow Diabetes Family Support Group Consultant Paediatrician Raigmore Hospital, Inverness Honorary Professor of Diabetes, Edinburgh University Clinical Psychologist PPALS, NHS Lothian Person with diabetes - gave on disengagement Paediatric diabetologist, Ninewells Hospital Dundee President of ISPAD

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First name

Surname

Role

Dr Chris

Kelly

Dr Andrew

Keen

Dr Brian

Kennon

SDG member Consultant Physician | Hon Senior Lecturer Forth Valley Royal Hospital Consultant Health Psychologist Diabetes Centre & Department of Paediatric Psychology Part of the Psychology Working Group for the Scottish Diabetes Group Consultant Physician / Diabetes & Endocrinology Deputy Chair of the Scottish Diabetes Group Southern General Hospital

Ross

Kerr

Person with Diabetes

Timothy

Lawes

Megan

Lott

Masters of Public Health and a special interest in Life Course Epidemiology. He has been doing research within our Diabetes Team and has written a paper on HbA1c tracking and the biopsycho-social determinants of glycaemic control in children and adolescents with Type 1 diabetes Young person with type 1 involved in just DUK it project, spoke on 10 September

Dr Joan

McDowell

National Education Co-Ordinator for Diabetes (2011-2013); Senior Lecturer in Nursing & Health Care, University of Glasgow

Morag

Maillie

Diabetes and Stroke MCN Manager, Fife

Carsten Nanette Dr Kirsty Dr Kathryn

Mandt Milne MSP Proctor Noyes

MCN coordinator, Paisley Host MSP MCN, Greater Glasgow Clyde and Glasgow Associate Specialist - Paediatric Diabetes Royal Hospital for Sick Children Edinburgh

Mike Dr Kenneth

Pringle Robertson

Former MSP and person with Diabetes Consultant Paediatrician RHSC, Yorkhill, Glasgow

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First name

Surname

Role

Gordon

Rushworth

Lead Pharmacist Diabetes / Advanced Pharmacist Clinical Research Highland Diabetes Centre / Highland Clinical Research Facility Honorary Clinical Lecturer, University of Aberdeen / Honorary Research Fellow, UHI

Dr John

Schulga

Consultant Paediatrician NHS Forth Valley

Alex Soren Diane

Silverstein Skovlund Smith

President of the IDF Young Leaders in Diabetes Director, Patient Research, Novo Nordisk MCN manager, NHS Ayrshire & Arran

Dr Francois

Taljard

Dr James

Walker

Elaine

Wilson

Consultant Anaesthetist and parent of Type 1 Diabetic child Endocrinology Consultant, St John's Hospital MCN Manager Tayside and SDG

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Appendix 2

List of written submissions to the Round Tables

Briefing Note on Just DUK1T

Diabetes UK Scotland

The DAWN™ Studies

Søren Eik Skovlund

Young People with diabetes in Scotland paper

Dr Andrew Keen Dr Corrie Darbyshire Dr Ann Gold

The Perspective from a young type 1

Megan Lott

Making Connections – HCPs and Young People

DUK Scotland

Overview of Paediatric and Transition Service and Support in Fife

Morag Maillie

NHS Lothian Psychology Pilot Project

Dr Andy Gentil

The Perspective from a parent of a young type 1

`

Dr J N Francois Taljard

Report on Delivery of Live for IT in Schools

DUK Scotland

Making it Easier to do the Right Thing

Mr Steve Birnie

Young People’s Views on the use of Social Media

Emma Cartwright

Diabetes Education in Scotland website

Dr Joan McDowell

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