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3. DEVELOPING HIGH QUALITY DIABETES CARE

3.1. Drivers of quality

3.1.1. Drivers of the development of high quality diabetes care include:

3.1.2. Diabetes Clinical Standards (NHS QIS). Clinical standards provide the basis for measuring local NHS performance against nationally agreed criteria. A review of the implementation of clinical standards was published in 2008.

3.1.3. SIGN Diabetes Guideline (Scottish Intercollegiate Guideline Network) SIGN provides an evidence base for clinical practice designed to reduce variations in practice and outcome. The SIGN guideline for diabetes, SIGN 55, is currently under revision, and is due to be published in the spring of next year.

3.1.4. The Quality and Outcomes Framework (QOF) for General Practice and the Scottish Enhanced Services Programme (SESP) for Primary and Community Care. The QOF and SESP incentivise primary care to focus on at-risk patients and improved outcomes for patients with diabetes. As from April 2009, the two target indicators for control of diabetes through HbA _1C measures have been changed to encourage even better control. In addition the QOF guidance for the foot assessment indicator now includes reference to foot risk stratification. Scottish practices have been achieving near maximum QOF points for diabetes indicators; and seven out of fourteen Health Boards have developed an enhanced service for diabetes care through the Scottish Enhanced Service Programme.

3.2. Managing improvement

3.2.1. Diabetes Managed Clinical Networks (MCNs) were established to bring together healthcare professionals, people with diabetes, unpaid carers and voluntary organisations to work across traditional boundaries in planning and delivering diabetes care. Their important role in the strategic planning of health services was recognised in the NHS QIS/Diabetes UK Scotland follow up report in March 2008.

3.2.2. The effectiveness of the diabetes MCNs depends on their ability to influence local planning and funding processes, and deliver nationally supported initiatives such as retinal screening, psychology support and quality assurance.

3.2.3. It is of particular importance that MCNs and local Community Health Partnerships ( CHPs) work together effectively. CHPs have been set up across Scotland to provide a wide range of community based health services delivered in homes, health centres, clinics and schools. The participation of CHPs within MCNs is likely to promote an effective working relationship between the two.

3.2.4. It is for NHS Boards to determine the most effective means of developing the MCN model to meet local needs. For example, in one Board area, diabetes care is planned and coordinated through a Long Term Conditions MCN manager. This has the benefit of sharing learning between clinical areas as well as connecting more readily to national policy on long term conditions, for example, the Self Management Strategy, Gaun yersel'. It is important, however, that we do not lose sight of the specific care needs of people with diabetes.

3.2.5. The diabetes MCNs will remain central to the local planning process for
patient-centred diabetes services and will have a key role in many areas including the integration of local clinical services, the development of redesigned pathways of care and staff education programmes. They will be the main agencies through which NHS Boards will meet the challenges set out in the revised Action Plan.

3.2.6. The Scottish Diabetes Group has a continued responsibility to bring together the diabetes MCN Lead Clinicians and Managers to ensure consistency of approach, and to identify themes of common interest in the working of the MCNs.

3.3. Supporting improvement

3.3.1. People with diabetes expect their care teams to communicate effectively, efficiently and with the relevant confidentiality safeguards in place. The necessity for high quality patient data in order to improve clinical management and service planning prompted the development of SCI-DC.

3.3.2. SCI-DC is a national programme of diabetes information management and technology development. It has now been rolled-out across all NHS Board areas and is linked to, and extracts relevant diabetes-related data from, all but seven of the GP Practices across Scotland and almost all Specialist Diabetes Clinics.

3.3.3. During 2008 the system was accessed on a total of 1,646,000 occasions by 2,621 different Health Service users from a very wide variety of different professional groups. SCI-DC can therefore now be considered an integral part of diabetes care in Scotland.

3.3.4. The SCI-DC team is currently working on giving people with diabetes access to their own diabetes related health data. Enabling access of this kind has been shown to improve people's ability to manage their own condition. This fits well with the approach outlined in Better Health, Better Care of encouraging people's active involvement in their own care. Further enhancements to the system during 2009 include:

• Specialist modules to support paediatric diabetes, podiatry, diabetes specialist nurses and dietetic teams;
• Linkage with biochemistry labs via SCI-Store;
• Linkage with Community Pharmacy;
• Automated 'back-population' of diabetes clinical data to GP systems; and
• Direct access by patients to their own diabetes-related health data.

3.3.5. The Scottish Government recognises the importance of SCI-DC's information sharing role, particularly in view of the multi-disciplinary nature of diabetes care. The Scottish Diabetes Group continues to monitor the progress made with SCI-DC and so ensure that the current momentum with the project is maintained.

ISSUES TO CONSIDER

• How can we ensure that clinical standards are being maintained and improved?
• What is needed to ensure that the updated SIGN guideline drives forward service improvement?
• What more can be done to increase the effectiveness of the diabetes Managed Clinical Networks in developing local services.

3.4. Focusing improvement

Type 1 Diabetes, Children and Families

3.4.1. The Short-Life Working Group (SLWG) on Type 1 diabetes has been set up to review services for people of all ages with Type 1 diabetes. It has identified a number of areas for particular consideration, including provision of education on diabetes, the diagnosis and management of people who develop diabetic ketoacidosis, intensification of insulin therapy, arrangements for transition from paediatric to adult clinics, and out-of-hours care. The SLWG will produce a draft report for consultation in autumn 2009.

3.4.2. The incidence of Type 1 diabetes in children has trebled over the last 30 years and is still increasing.

3.4.3. Studies by the Scottish Study Group for the Care of Diabetes in the Young indicate that overall glycaemic control in children under the age of fifteen is poor and only a small percentage achieve optimal blood glucose control.

3.4.4. Good control of diabetes in childhood and adolescence can reduce complications in later life but management is challenging and families need considerable support to optimise blood glucose control and quality of life at diagnosis and on a regular basis. Their needs change with time and are also affected by ethnic background, the level of psychosocial support available and issues around deprivation. Families need support at diagnosis and access to advice and guidance to ensure they do not feel overwhelmed by diabetes.

3.4.5. As children enter their teens, dealing with diabetes often becomes very difficult. At a time when their life is becoming full of all sorts of other responsibilities and worries like exams, dealing with parents and becoming sexually aware, they have the burden of an insistent medical condition requiring daily attention. Physiological changes during adolescence can lead to insulin resistance and problems with glucose control. Many become overwhelmed with the difficulties and drop out of diabetes clinics at this time, so extra effort is needed to keep in touch with them, and to provide a sympathetic environment which is sensitive to the needs of adolescents.

3.4.6. A survey carried out by Diabetes UK Scotland indicated that children with diabetes can face unnecessary problems at school, such as exclusion from school trips, being denied access to necessary snacks and issues around injections. Guidance on the Administration of Medicines in Schools, issued in 2001, is designed to support good practice at school and between schools, the health service and families. The guidance acknowledges that 'a child's experience of school can sometimes be interrupted by a medical condition. In these circumstances it is very important to ensure that their education should neither be interrupted nor curtailed by the need to take, or have medication administered whilst in school.'

3.4.7. While there is good practice in many schools across Scotland, work still needs to be done to ensure that no child with diabetes is, in any way, disadvantaged as a result of their diabetes. Equally, parents and families need to be supported to maintain working lives. Work is currently under way through the Long Term Conditions Alliance Scotland to develop policy in this area across long term conditions. At the same time the Short Life Working Group for Type 1 diabetes ( SLWG) is currently looking at what work is needed to remove barriers and provide support in the school environment

3.4.8. One possible means for developing paediatric care currently under consideration is the development of a National Paediatric MCN for diabetes. This would complement the work of both the Scottish Diabetes Group and potentially provide a mechanism for delivering and implementing the recommendations of the Short Life Working Group on Type 1 diabetes.

ISSUES TO CONSIDER

• How can we continue to improve paediatric care and what are the priorities?
• What would be the role of a national Paediatric MCN for diabetes?
• How can transitional care arrangements be improved?
• How do we ensure that children with diabetes are supported at school?

3.5. Psychological and emotional support

3.5.1. Mental health problems occur frequently in diabetes; depression is the commonest disorder, but it is often unrecognised and untreated. It affects those with both Type 1 and Type 2 diabetes. Between 20 and 30% of people with diabetes will experience significant depression which is often associated with poor self-care. In adults with established Type 1 and Type 2 diabetes, the frequency of depression and anxiety is about twice as high as in the general population. Some studies suggest that depression and/or anxiety may affect up to 50% of young people with poorly controlled Type 1 diabetes. Depression may also be a risk factor for diabetes (especially Type 2), due to its effects upon diet, exercise and smoking/drinking.

3.5.2. The 2006 Action Plan recognised the strong association of depression among those with diabetes and the fact that psychological and emotional problems can represent a barrier to effective self management. Access to psychological support is also embedded
in the NHS Quality Improvement Scotland clinical standards for diabetes services.

3.5.3. The current strategy developed by the Diabetes Psychology Working Group aims to implant psychological care within diabetes services, through training NHS staff to improve their skills in behaviour change and psychological support. Recent studies have shown that this approach can be effective in reducing HbA _1c levels while also allowing a larger number of people to benefit from psychological support than would otherwise be the case.

3.5.4. Training courses have been made available to all NHS Boards and all health care professionals involved in diabetes care. Staff have developed skills in communication with patients, and negotiation and helping patients to change important health behaviours.

3.5.5. Initial funding has been provided for a number of part-time chartered psychologist posts. Four are to be based within adult diabetes services and one employed within a paediatric diabetes service. The funding is open to all MCNs (nine of which have registered formal interest) and the early signs are that there is a great deal of interest across Scotland. All posts will last three years and there is an obligation on successful MCNs to make substantial efforts toward securing ongoing funding.

3.5.6. Living Better is a new initiative organised by the Royal College of General Practitioners which aims to improve the mental health and wellbeing of people with diabetes and coronary heart disease. It is funded by the Scottish Government and runs from January 2008 to November 2010. The project aims to improve the detection, assessment and management of depression, anxiety and stress, through the development and implementation of local care pathways. Its findings will be disseminated across Scotland.

ISSUES TO CONSIDER

• What further improvements can be made in the provision of psychological support for people with diabetes?
• How can these improvements be achieved?
• What outcomes would indicate acceptable progress in this area?

3.6. Diabetes-related hospital admissions and inpatient care

3.6.1. People with diabetes stay an extra two to three days in hospital compared to those with other conditions and around 10% of people in hospital, at any one time, have diabetes. Interventions such as foot care in the community and additional inpatient support can reduce admissions and bed occupancy for people with this condition.

3.6.2. The HEAT (Health Improvement, Efficiency, Access, Treatment) targets reflect the priorities, objectives and measures agreed as part of local delivery plans with each NHS Board. The HEAT target most relevant to diabetes is T6: 'to achieve agreed reductions in the rates of hospital admissions and bed days of patients with primary diagnosis of COPD, Asthma, Diabetes or CHD, from 2006-07 to 2010-11'.

3.6.3. Progress towards achieving this target has been advanced with the introduction of a national protocol for the management of adolescents and adults with diabetic ketoacidosis ( DKA) which is currently in use in several hospitals across Scotland. The Scottish Diabetes Group's Type 1 working group is considering further audits to measure the incidence of DKA as well as further actions to promote awareness of DKA among both the public and health care professionals. There is also evidence to suggest that early supported discharge by a team including specialist nurses can be very effective in reducing bed days for diabetes.

ISSUES TO CONSIDER

• How can we further reduce the numbers of diabetes-related hospital admissions; and what should the priorities be?
• How can we measure in-patient activity for people with diabetes more effectively?
• How can we improve the quality of in-patient care for people with diabetes?

3.7. Black and Minority Ethnic Communities

3.7.1. UK South Asians are about four times more likely to develop diabetes than their peers from other ethnic groups, while the black population is twice as likely to develop the condition. Improving access to diabetes care for these high risk groups has therefore been a vital component of our diabetes strategy.

3.7.2. Some NHS Boards have yet to complete a needs assessment of their population to identify disadvantaged groups and data collection on ethnicity has reached 50% rather than the 80% target.

3.7.3. The Scottish Diabetes Group's Diabetes Minority Ethnic Group ( DMEG) has recently been re-formed with the aim of improving outcomes for people with diabetes from minority ethnic communities. DMEG aims to prioritise prevention, early detection, improving access to culturally appropriate diabetes care, self management and carer education for both Type 1 and Type 2 Diabetes. Two subgroups, 'Education and Training' and 'Information and Resources' have been established. A wider Stakeholder Network involving the minority ethnic voluntary sector, MCNs and other health care professionals will be set up to share and disseminate good practice. DMEG is therefore now in a position to play a significant role in ensuring that the Action Plan's focus on improving services in this area continues.

3.7.4. The Prevention of Diabetes and Obesity in South Asians ( PODOSA) study, funded by the National Prevention Research Initiative and supported by a range of government and charity funders, led by the Medical Research Council, is testing ways to prevent diabetes. It is being carried out by a research team from Edinburgh and Glasgow Universities. People were recruited to the study during 2007 and 2008 and will be involved for 3 years.

3.7.5. In the PODOSA study, a team of dietitians will work with people at high risk of developing diabetes to encourage weight loss and increased physical activity, in order to find out if this approach can prevent or delay the onset of diabetes. Dietitians will also involve other members of the family to help motivate the person at high risk. People's diet and level of physical exercise will be examined, with the aim of achieving a reduction in blood glucose levels, weight loss, and waist and a reduced hip size. So far, over 1,000 people have been screened, 8% of whom have been diagnosed with diabetes and a further 16% with Impaired Glucose Tolerance or Impaired Fasting Glucose. This means that the body does not use glucose properly, which contributes to high blood sugar levels.

3.7.6. The diabetes MCNs have taken steps to ensure that all healthcare professionals caring for people with diabetes have access to information about locally available health improvement resources such as smoking-cessation services, Counterweight programmes, sport and leisure facilities, and healthy eating advice and referral options. They need feedback from central initiatives so that that lessons learned from preventive community medicine initiatives, such as Keep Well, are applied in the context of diabetes. The Action Plan will reinforce the role that the diabetes MCNs can play in promoting the prevention of Type 2 diabetes.

3.7.7. Over the past three years, there have been several initiatives focused on diabetes in black and minority ethnic communities:

• 'Focus on Diabetes' A guide to working with black and minority ethnic communities in Scotland living with long term conditions (Diabetes UK and NRCEMH, 2007);
• Evaluation of diabetes services for Black and Minority Ethnic communities in Scotland - results of a survey of Diabetes Managed Clinical Networks, (2006); and
• Structured Diabetes Education Packs for South Asian and Chinese Communities ( NHS Greater Glasgow and NRCEMH) (To be launched in September 2009).

ISSUES TO CONSIDER

• How can we further improve services and the experience of care for people with diabetes from minority ethnic communities?
• What would indicate acceptable progress in this area?

3.8. Diabetic Foot Care

3.8.1. A Diabetes Foot Action Group was established in 2007 with the following goals:

• Develop consistent patient information nationally;
• Develop educational tools for use by all health-care staff;
• Identify specialist foot services available across Scotland;
• Support the development of Local 'Foot' Networks;
• Record foot risk stratification (75% of all patients by 2009); and
• Develop accredited training programmes to recognise specialist skills.

3.8.2. Six nationally agreed patient education leaflets, a booklet on foot-care and a DVD for professional education for patients have been developed. All of these educational tools have been circulated nationally and are, or will be, web-available.

3.8.3. The launch of the National Foot Screening Programme at the Scottish Parliament in 2008 has been followed up by a number of ongoing road shows across Scotland, to promote not only the educational materials, but also supporting local foot-networks, rolling out foot risk screening and the other general aims of the Diabetes Action Plan. The number of people with diabetes who have undergone a SCI-DC foot risk stratification rose from 25% in August 2007 to 45% by September 2008. This demonstrates a significant increase, especially when considering a number of IT difficulties which are currently being addressed.

3.8.4. A survey has been undertaken to identify what specialist foot services are available across Scotland. It has been surprisingly difficult to define a 'Multidisciplinary Foot Clinic', but a consensus has been reached, which has enabled benchmarking of specialist foot services. This has led to a short document defining a desirable service specification. Initial discussions are under way with NHS Quality Improvement Scotland (NHS QIS) to determine if this document and the forthcoming SIGN guideline may underpin a NHS QIS service specification for high quality diabetic foot services.

3.8.5. Further work identified key contact points for specialist foot services in each diabetes MCN. The aim of establishing such a register is to share it with primary care out of hours services, A&E departments and possibly NHS 24, so that patients can be directed by out of hours services to specialist diabetes foot care services which normally operate during routine working hours.

3.8.6. This work is linked to the appropriate NHS QIS clinical standard on diabetes, which states: 'All people with diabetes who have identified associated foot problems are referred for specialist assessment and, where necessary, treatment.'

ISSUES TO CONSIDER

• How can we continue to improve footcare for people with diabetes?
• What outcomes would indicate acceptable progress in this area?

3.9. Retinopathy screening

3.9.1. Diabetic retinopathy is the largest single cause of blindness and visual impairment amongst people of working age. It is a common complication of diabetes that affects the blood vessels behind the eye. The longer a person has diabetes, the greater the likelihood of developing diabetic retinopathy. In its early stages, diabetic retinopathy is symptom-free. Early detection of sight threatening retinopathy and treatment by laser therapy has been shown to be effective in preventing visual impairment.

3.9.2. Since the publication of the Diabetes Action Plan in 2006 each NHS Board in Scotland has set up a Diabetic Retinopathy Screening Service, based on a national standard of digital retinal photography. These services are coordinated by the Diabetic Retinopathy Screening Collaborative (DRSC). There has been significant progress since 2006 with some Boards achieving the target of 80% of the eligible population screened within the twelve month period to April 2008. The Diabetic Retinopathy Screening (DRS) programme in Scotland is very dependent on information technology and, in particular, the interface to the SCI-DC diabetes database.

3.9.3. Implementation of the retinopathy programme has presented a number of challenges which have meant the programme has not been established as quickly as originally envisaged. Nevertheless, the retinopathy screening programme in Scotland, with a single screening system electronically linked to a national diabetes register is, arguably, the most advanced in the world. The 2008 survey found that 71.9% of patients had a record of eye screening in the previous 15 months.

3.9.4. It is uncertain if all patients who already attend eye clinics are included in the screening data. This infers that the number of people getting their eyes screened might actually be higher than the numbers recorded. More exploratory work on data accuracy needs to be carried out.

3.9.5. The Scottish Government has now provided a grant to optometrists to purchase digital cameras, and from April 2009 optometrists are obliged to offer retinal photography to all people aged 60 and over, whether they have diabetes or not. Optometrists and the DRS Programme need to work together to enable people with diabetes to benefit from a cohesive and first class service. Patients are strongly encouraged to attend their DRS appointment even if they have had retinal photography at their optometric examination. It is equally important that patients who have had a DRS episode are strongly encouraged to attend their optometric examination, especially as people with diabetes are more prone to other eye conditions which may not be detected in the DRS programme. A pilot study of optometrist image capture is being undertaken to inform possible future involvement of community optometrists in DRS and determine the benefits which increased partnership working would bring to patients.

3.9.6. In 2007/08, a joint campaign between Diabetes UK Scotland and RNIB Scotland sought to raise awareness of the availability of diabetic retinopathy screening in communities across Scotland. Funded by the Scottish Diabetes Group and other agencies, the campaign organised a roadshow, which travelled to NHS Board areas including Orkney, Shetland and the Western Isles. Venues included a Farmers' Market in Inverness and Gala Bingo in Maryhill, Glasgow.

ISSUES TO CONSIDER

• How can we continue to improve retinopathy screening and eye care for people with diabetes?

3.10. Structured Education

3.10.1. Education is a cornerstone of good diabetes care. The NHS QIS/Diabetes UK Scotland overview report on diabetes care published in March 2008 noted that 12 of the 14 NHS Boards had well-established systems in place for the provision of some form of education session to newly diagnosed patients.

3.10.2. The provision of structured education calls for investment of time and human resources, either to train educators or to obtain cover while existing staff cascade training to other staff. Implementation of educational programmes can be challenging for the diabetes Managed Clinical Networks, since regular structured education programmes may not have an obvious source of funding. In addition, some clinical staff may not have the expertise to deliver group education and there may be limited staff time to attend training courses in education techniques. These educational activities are however essential to basic diabetes care. The following are examples of evidence based structured education programmes available in Scotland.

3.10.3. DAFNE (Dose Adjusted For Normal Eating) is a structured education programme for people with Type 1 diabetes that involves a 5-day training course delivered to groups of 6-8 participants that covers topics such as carbohydrate estimation, blood glucose monitoring, insulin regimens, hypos, illness and exercise. DAFNE courses are currently delivered in NHS Dumfries & Galloway, Grampian, Greater Glasgow & Clyde, Lanarkshire and Lothian.

3.10.4. DESMOND (Diabetes Education and Self Management for Ongoing and Newly Diagnosed) is a structured education programme for those with Type 2 diabetes. Studies have shown this approach to be effective at encouraging weight loss, smoking cessation and in helping to decrease depression scores; though there is less evidence to show that
it decreases HbA _1c levels. DESMOND courses are delivered in Greater Glasgow, Dumfries and Galloway and parts of Lothian.

3.10.5. The X-PERT programme is also a structured patient education programme for people with Type 2 diabetes. It shows an increase in patient empowerment, improvement in HbA _1c and lipid profile, weight loss and reduction in weight circumference, all maintained at one year. X-PERT is delivered in Lanarkshire.

3.10.6. Funding from the Scottish Diabetes Group has supported a project undertaken by the Scottish Study Group for the Care of Diabetes in the Young entitled 'Improving services for people with Type 1 diabetes'. One of the project's aims is to develop a standardised set of educational tools and programmes for Type 1 diabetes, to promote consistency of approach across the country. The project's first task was to conduct a survey of current educational strategies. An interim report, giving an overview of the education services currently available to people with Type 1 diabetes, was produced in June 2008. This found that although patients were receiving information, they did not necessarily understand or know how to apply it.

3.10.7. A further aim of this project is the development of a Scottish Diabetes Education Network, the first meeting of which took place towards the end of 2008. Part of the Network's role is to enable diabetes educators to develop appropriate resources and national standards for diabetes education delivery. It aims to 'better utilise, share and benefit from colleagues' experiences locally and develop appropriate resources and national standards for diabetes education'. It also gives diabetes educators the opportunity to organise and deliver throughout Scotland local and regional meetings which will address issues pertinent to diabetes education practice. Diabetes UK Scotland is one of the driving forces of the Network.

3.10.8. SIGN has established a Lifestyle group as part of their review of its Diabetes Guideline. This group is considering the evidence on structured education.

3.10.9. Consideration will need to be given to the most effective way of increasing the provision of structured education programmes. Added attention will need to be focused on the information and educational needs of those who have had diabetes for some time, as well as those newly-diagnosed. It is also important that information is provided in a way that does not widen health inequalities. Delivery of structured education needs to be rigorously monitored in terms of quality assurance, and training and accrediting the trainers.

3.10.10. There is currently no evaluated, structured paediatric or adolescent education programme in the UK although two are in preparation; what is available is unstructured and some educators have limited formal training in education.

ISSUES TO CONSIDER

• What outcome would indicate progress in the area of structured education?
• How can we improve access?
• How can we ensure quality across Scotland?

3.11. Professional education

3.11.1. The Diabetes Education Advisory Group ( DEAG) has overseen a number of projects and initiatives relevant to the Diabetes Action Plan over the last year, including the development of a Scotland wide strategy for professional education. DEAG has also been working with the Scottish Diabetes Industry Alliance to re-establish the 'Diabetes in Scotland' web site www.diabetesinscotland/org.uk and to provide a database of current educational courses and activity in Scotland. This is now complete and links into other related educational sites such as the long term conditions educational resource and the eLibrary diabetes portal.

3.11.2. A subgroup of the DEAG worked with Doctors Online Training Scheme ( DOTS) and accessed input from a multi-disciplinary group, to form an online diabetes training course for junior doctors. This course has potential benefits to other clinical and nursing staff and opportunities for these personnel to access the information are being explored.

3.11.3. Given the further areas of diabetes inpatient management which need to be addressed, it is proposed to form an 'Inpatient Management Group' which will report to the DEAG and advise on educational needs for staff to ensure patient confidence during any inpatient events. (See 3.6)

3.11.4. The diabetes MCNs are responsible for co-ordinating educational and training initiatives for staff to ensure professionals are equipped to deliver the range of clinical services across the Network both in the community and in specialist practice. This can range from the delivery of highly specialist services such as treatment with Continuous Subcutaneous Insulin Infusion (CSII) to the management of diabetes by non-specialist staff in care homes. It will include expertise in the delivery of high quality patient centred individual and group educational programmes.

ISSUES TO CONSIDER

• How can we ensure access to appropriate education for all health care professionals and health care workers in Scotland?
• What outcomes could assess this?

3.12. Research

3.12.1. The Scottish Diabetes Research Network (SDRN), funded by the Chief Scientist Office ( CSO), conducts an annual audit of all diabetes clinical research in Scotland. The volume of diabetes research continues to increase and in 2008, 80 academic studies and 37 commercially funded clinical studies were carried out in Scotland. Just over 20,000 participants were involved, including 15,500 people who were recruited to the Wellcome Trust funded case-control study aimed to identify key genes that can predispose to diabetes. CSO is currently supporting 16 diabetes projects at a cost of £2.6m in addition to key genetics projects such as Generation Scotland (£8m) and Scottish island isolate of Orkney project (~£1m), both of which measure quantitative traits related to diabetes. The Network currently receives £340,000 a year and will receive over £1.8m of funding over the next three years to continue to:

• Establish an integrated diabetes research infrastructure between the four major academic centres in Scotland and associated Managed Clinical Networks;
• Increase the volume of high quality commercial and academic clinical trials and increase recruitment throughout Scotland;
• Provide a platform for high quality, unintrusive epidemiology on a national level; and
• Increase awareness and opportunities for patients to be recruited to clinical trials.

ISSUES TO CONSIDER

• What should future research priorities be?
• How can we increase public involvement in research?

3.13. Out-of-Hours and Remote and Rural Services

3.13.1. The Type 1 Diabetes Short Life Working Group and the diabetes Managed Clinical Networks have explored means to improve access to out-of-hours diabetes advice for families with children with diabetes in order to reduce the number of unplanned admissions for metabolic emergencies. DiabNet was established to provide consistent, coordinated, high quality care and support for children with diabetes and their families across NHS Tayside, Fife and Forth Valley. Better cross-border communication and practice has been developed, new clinics and support groups have been established and a specialist 24-hour helpline is available to families.

3.13.2. Recent discussions have taken place between the Type 1 Short Life Working Group and NHS 24 on the subject of further improving their diabetes out-of-hours service, and the consensus is that this represents a viable alternative to rolling out the DiabNet scheme further.

3.13.3. Remote and rural areas pose specific challenges to the delivery of care. Telehealth can help diabetes services overcome these obstacles, by allowing clinicians to consult with patients remotely. At the moment live video conference clinics are available for people with diabetes in Orkney. This includes links to a computer for patient monitor readings. These are supported locally by nursing staff and a consultant based in Aberdeen. Telehealth can also allow GPs to consult with specialists thereby reducing the need for referrals.

3.13.4. Telehealth may also have a role to play in supporting self management. The TeleScot randomised control trial incorporating home monitoring of patients with diabetes is due to start later this year in NHS Lothian (funded by the Chief Scientist Office and involving around 300 patients). The small trials that have been carried out are very positive but need to be repeated in the UK and in large enough numbers to have the power to demonstrate effectiveness.

ISSUES TO CONSIDER

• What can be done to ensure out-of-hours care services are equitable across Scotland?

3.14. Pregnancy

3.14.1. Type 1 diabetes mellitus is a high risk state for both the woman and her foetus because of increased risks of spontaneous abortion, ketoacidosis, severe hypoglycaemia, pre-eclampsia, premature labour, polyhydramnios, late intrauterine death, foetal distress, obstructed labour and congenital malformation. Infants of mothers with diabetes need careful monitoring after birth.

3.14.2. Previous hospital based audits in Scotland and England and Wales have highlighted the continuing challenges of management of pregnancy in women with diabetes. In Scotland paper audits were held in 1998/1999 and in 2003. These audits reported an increase in birth weight, rates of caesarean section, congenital anomalies and perinatal mortality relative to the background population.

3.14.3. Type 2 diabetes is less common than Type 1 diabetes during the reproductive years but management prior to and during pregnancy should follow the same intensive programme of metabolic, obstetric and neonatal supervision.

3.14.4. An optimal outcome may be obtained in diabetic pregnancy if excellent glycaemic control is achieved before and during pregnancy. This requires that pregnancy should be planned. Good contraceptive advice and pre-pregnancy counselling are thus recommended. An experienced multiprofessional team led by a named obstetrician and physician should provide comprehensive maternity care prior to and during pregnancy.

ISSUES TO CONSIDER

• What initiatives could further improve outcomes of pregnancy in women with diabetes?

3.15. Insulin pump therapy

3.15.1. Continuous Subcutaneous Insulin Infusion (CSII or pump therapy) can lead to significant improvement in glycaemic control and quality of life for some people with Type 1 diabetes. The safe and effective use of insulin pumps requires a motivated individual to monitor blood glucose levels on a regular basis, as well as all aspects of their diabetes.

3.15.2. Education, and regular support from a competent diabetes team, are therefore critical for all those using insulin pumps. The current guidance outlined in NICE Technology Appraisal 151 (July 2008) has been validated by NHS QIS. It says that insulin pump therapy should be considered as an option for adults and children over 12 years when multiple dose insulin therapy has failed. Insulin pump therapy is also recommended as a possible treatment for children under 12 with Type 1 diabetes if treatment with multiple daily injections is not practical. These criteria will be reflected in the template for insulin strategies being developed by the Scottish Diabetes Group's Short Life Working Group on Type 1 Diabetes, and may need modification after publication of the revised SIGN Guideline on diabetes.

3.15.3. In 2008, there were at least 416 people in Scotland on insulin pumps, equating to nearly 1.5% of the Type 1 population, in line with previous NICE guidance. The revised advice, however, could mean up to 3,750 people in Scotland on a pump.

3.15.4. Prevalence of insulin pump usage varies between NHS Boards. The Scottish Diabetes Group aims to address this variation through supporting actions such as the Insulin Pump Education Day that took place in May 2009. This brought together teams from NHS Boards across Scotland to discuss current CSII arrangements and future developments. A patient-led Insulin Pump Awareness Group is in the process of forming in the west of Scotland. The group, which is being supported by Diabetes UK Scotland, aims to assist people with diabetes who may want to use pump therapy.

3.15.5. Decisions surrounding the provision of insulin pumps should be evidence based and take account of patient choice as well as the availability of alternative therapies that can provide equally successful outcomes for patients. NHS QIS will work on an impact assessment looking at the revised SIGN guideline on diabetes, and this should provide further evidence to support and guide judgements surrounding the use of insulin pumps.

ISSUES TO CONSIDER

• What further steps should be taken to increase the appropriate availability of insulin pumps?
• What support structures need to be in place to ensure that insulin pumps therapy is fully effective?

3.16. Care Homes

3.16.1. National Care Standards for residential care include the right to make informed choices and the right to safety and security in health and wellbeing. People with diabetes living in care homes need supportive diabetes care to ensure, for example, that they are able to access good podiatry care and that they can make choices about their care, including self management. Their care workers also need to have an understanding of diabetes management.

3.16.2. Over the past few years, Diabetes UK Scotland has successfully organised diabetes study days for care home and other social work staff. Collaboration with those responsible for training programmes for staff in care homes could lead to the development of programmes to improve diabetes knowledge and skills of staff and support residents. Innovative mechanisms would be required to deliver these courses at a local level throughout Scotland.

3.16.3. Similar opportunities could be made available to other groups of staff in non- NHS locations such as prisons, schools and workplaces.

ISSUES TO CONSIDER

• What developments could improve diabetes care for those in care (including custodial) settings?

3.17 Renal Disease

ISSUES TO CONSIDER

• Kidney disease is an important complication of diabetes. What more can be done to prevent kidney disease in people with diabetes?

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