Embracing quality initiatives and capturing innovation

The successes of the regional and national paediatric diabetes networks were described briefly in the last editorial (Campbell and Waldron, 2015), but the true extent of their accomplishments is far greater, and they continue to flourish at an exponential pace. Service redesign, innovation, extensive stakeholder collaborations and national/international engagement fuel the fire of success. New publications and initiatives continually improve the care we offer to children and young people (CYP) with diabetes and their families.

National guidelines
Recent national publications, such as the new NICE guidance in August 2015 (NICE, 2015; Dalton et al, 2015) and the Diabetes Transition Service Specification (NHS England, 2016), help us set a new foundation for clinical care. For the first time, NICE guidance encourages us to help our patients aim for a blood glucose level in the normal range of 4–7 mmol/L and an HbA_1c value of 48 mmol/mol (6.5%) or less. Specific guidance on the management of type 2 diabetes is also included. The important caveat to target-setting is that it should always be done on an individual basis, in the context of the family environment. Indeed, we must always keep the patients and their families at the forefront of all quality improvement initiatives.

The Diabetes Transition Service Specification, published by NHS England, is the first agreed set of principles for the care of young people with diabetes up to the age of 25 years. It is designed for those who are transitioning from a paediatric service to an adult service, as well as for those moving between different adult services, including to primary care settings, and those moving from one geographical area to another. Although non-mandatory, this specification will inform commissioners of a clear, local approach with multi-agency partnerships, to include health, social care, education, Local Authorities and, where appropriate, third-sector providers. The template will highlight the responsibilities of the commissioner and provider in delivering transition and young adult services to the standards set out in the NICE QS6 quality standard and NG18 guideline (NICE, 2011; 2015).

In addition to the Transition Specification, healthcare professionals now also have access to Transition, a document produced by the Families with Diabetes National Network in which parents of CYP with diabetes have outlined what they think makes a smooth and seamless transition process. More information on this is available in Adrienne Burton’s article.

Diabetes care in schools
Collaborations between networks and national organisations continue to enhance the quality of care and training that can be offered to all people with responsibilities for CYP with diabetes. Bringing together healthcare professionals with expertise in the management of CYP with diabetes in schools, JDRF and three of the regional networks (North West, East of England and Thames Valley) are about to launch a two-module (basic and advanced levels) e-Learning package for school staff titled “An Awareness of Type 1 Diabetes in Schools and other Settings”. These modules create an exciting, interactive learning experience that will improve the confidence and competence of the learner and, consequently, the care and safety of CYP with diabetes in schools.

The new position statement from Diabetes UK (2016) – “Caring for children with type 1 diabetes in nurseries” – will also be a great addition to enhance care in the <5-year age group. Guidance is given on how to ensure a safe environment, with appropriately trained staff, so that the child can be healthy and participate in all nursery activities with no compromises due to diabetes.

The importance of partnership working continues to be recognised at the highest level, and the Healthy London Partnership, Diabetes UK and South East Coast and London Diabetes Partnership Board have just won the Roy Lilley Picalley Award for their policy and guidance document for CYP in pre-school, primary and secondary education (Healthy London Partnership et al, 2015).

Structured education
The demand for the development of Structured Patient Education (SPE) programmes has continued to grow within the regional networks and nationally. Many networks have worked hard to develop and deliver their own SPE programmes (Campbell and Waldron, 2015). The Wales network has recently launched its own programme targeted at children in Key Stages 3 and 4, entitled “Diabetes at Diagnosis” (Children and Young People’s Wales Diabetes Network and Brecon Group, 2015). This programme has a detailed curriculum and includes a workbook for assessment of diabetes knowledge and related skills. It also includes a quality assurance assessment of the educator.

Complementary to this regional investment in SPE, Novo Nordisk has recently funded a revision of their “Goals of Diabetes Education”, an SPE programme that offers patient-centred learning for CYP aged 6–18 years (Novo Nordisk, 2016). It contains a healthcare professional training guide, training record sheets and hand-outs for attendees.

Embracing new technologies and partnerships
The annual Diabetes UK Professional Conference was held in Glasgow this year. The conference brought together many inspiring presentations from young people, parents and clinicians that demonstrated the power of successful partnership and team working.

Newham and King’s College Hospitals, in London, gave insights into the benefits, both for patients and for clinicians, of conducting “virtual clinics” via Skype. Patients highly rated the virtual clinics, as they were able to book their own appointment at a time to suit them and the appointments were flexible and easy to change. Parents and carers said that they were able to get support and advice from the comfort of their own home and that they didn’t feel as stressed as with a hospital visit. Clinicians felt that many patients valued the convenience of Skype, particularly as many use it in their daily life. In addition, engagement and self-management often improve, as they are initiated by the young people: “It also seems to change the clinician–patient relationship for the better.” Skype is also cheaper for both parties but, of course, a computer is required. Virtual clinics may not suit all patients, but it appears that most want a mix of face-to-face and online clinics, rather than online-only, and the combination allows for necessary clinical tests and screening, physical examinations and discussion of sensitive issues.

At the conference, Dr Henk Veeze, from the Netherlands, introduced Diabeter, his specialised treatment centre for CYP with diabetes (Diabeter, 2016). The centre is purpose-built and employs its own multidisciplinary team and staff just for CYP with diabetes. Its mission is to provide a complication-free life for CYP and state-of-the-art care, equipment and outcomes. The centre offers consultations 24 hours a day, and each family can access real-time, personalised care by remote monitoring of blood glucose levels through an e-Health computer programme in an easily understandable format. Education, self-management and research are high on the agenda. Diabeter continues to flourish, optimising care and achieving outcomes comparable to any global counterpart.

Increasing engagement
The Diabetes UK conference also showcased initiatives embracing effective engagement methods and current communication strategies for young people in order to re-engage them into care. Diabetes Scotland engaged young people with diabetes aged 16–25 years to develop a “Youth Engagement Toolkit” (Diabetes UK, 2016). The toolkit aimed to develop and deliver innovative youth engagement training and supportive materials for healthcare professionals. The young people co-delivered the workshops with practitioners, and they were also encouraged to run local online groups to promote peer support and shared learning.

The Londonderry centre in Northern Ireland was also concerned about the vulnerable group of young people who did not attend clinic. Following an initial survey in Northern Ireland showing that continuity of care, lack of listening and open discussions were major issues, steps were taken to make improvements. Various forms of social media were used, including a Facebook page – Type 1 Diabetes Network Northern Ireland – and a Twitter account to develop a safe, supportive and constructive space for all people with type 1 diabetes. This was followed by the development of a philosophy of empowerment and patient-centred care, facilitated by training from Knuston Ireland (see: www.diabetescounselling.co.uk). Prospective data on the impact of these changes to re-engage these young people and improve their outcomes are currently being collected.

Social media
The role of social media is now embedded in diabetes care, not only for education but also for emotional support and the development of an identity living with diabetes. There are many examples of online resources and social media, including Facebook, Twitter, blogs and Google Hangouts, that have become lifelines for young people to source information, solve problems and get emotional support. Diabetes UK’s Type1uncut campaign (#Type1uncut on Twitter and available at: www.youtube.com/user/type1uncut) has many resources, from factual videos to honest chats about life-relevant issues.

In this issue of Diabetes Care for Children & Young People, Laura Cleverly describes how social media, and particularly her online blog, “Ninjabetic”, helps her cope with the burden of diabetes. Cooper and Kar (2014) describe not only the importance of social media to young people with diabetes but also the need for healthcare professionals to embrace this form of communication, so that they can appropriately signpost young people to find the most useful internet resources available. As Laura points out, there is a place for healthcare professionals in these social media communities, and being involved will provide a deeper understanding of their young people with diabetes. Understanding and embracing these forms of communication is important for the future (Jones et al, 2013).

Blood glucose monitoring
Technical innovation continues to improve the lives of our CYP with diabetes. Anecdotally, many CYP say they prefer their insulin injections to finger pricks, as the latter hurt more. With the demands of intensive insulin therapy and stricter targets, the recommended number of finger-prick tests has increased to a minimum of five per day. However, it is hoped that Abbott’s FreeStyle Libre will go some way to improve matters. The Libre is worn on the back of the upper arm, for up to 14 days at a time, and can be scanned whilst still in position, under clothing, by passing a reader over it, thus eliminating the need for routine finger pricks. It is the first flash glucose monitoring device to be licensed for CYP (aged 4–17 years) in the EU; however, unfortunately, it is not yet funded within the NHS.

Further developments in reporting blood glucose levels are aiding daily management. A single, one-page report called the ambulatory glucose profile (AGP) is drawing particular interest. The AGP is a plot of data collected over a defined time period (e.g. 2 weeks) displayed to look as if the data had been collected over 24 hours, using smoothed curves representing the median, 25th and 75th percentiles, and 10th and 90th percentiles. This allows clinicians to base their advice on a practical and comprehensible view of the glucose levels that their patients typically achieve. AGP also allows identification of patterns such as high glycaemic variability at certain times of the day or days of the week, providing a good insight into whether it is behavioural or treatment-based intervention that is required to correct glycaemic excursions. AGP has recently been recommended by a panel of diabetes experts in the US as a standardised way of presenting and analysing blood glucose profiles (Bergenstal et al, 2013).

A further addition to the diabetes management toolbox is the development of the Advanced Bolus Calculator. This is housed on a smartphone platform and not only calculates insulin boluses when fed information but also holds a memory of the individual’s experiences to date, so that it can fine-tune the bolus advice taking into account continuous glucose monitoring data, the current blood glucose level, the carbohydrate value of the meal and anticipated absorption rate, exercise levels and alcohol intake (Pesl et al, 2016a; 2016b). Clinical trials have taken place to check the accuracy of the bolus calculation and the acceptability of the programme to users, and results so far are looking favourable (Reddy et al, 2016).

Concluding remarks
The challenges placed on CYP, their families and healthcare teams for successful management of diabetes can be best addressed if high-quality care and new innovations can be integrated into routine clinical practice. The developments outlined in this editorial, many of which will be examined further in this and later issues of the journal, are exciting and bode well for the future. However, clinicians should remember that successful adoption and benefit from new initiatives and innovative technologies must always take individual patient needs into consideration.