Scottish Diabetes Framework

Scottish Diabetes Framework

Specific Groups

80. Many of the proposals put forward in the Framework are applicable to all patients with diabetes but certain groups are either more likely to be affected by diabetes, or have specific needs which require special consideration of how care can be delivered most effectively.

Children and Young People

CSBS Standard 3 - Patient Focus

All people with diabetes have equitable access to information and multidisciplinary programmes of education, which are tailored to individual needs and specific client groups.

81. As the Scottish Executive pointed out in its response to the Final Report from the Bristol Inquiry, one of the Inquiry's central findings was the lack of priority which had been given to children's services. In Scotland, children's services have already been identified as a national priority, and a Scottish Cabinet Committee, chaired by the First Minister, has been set up to deal with children's issues across the Executive as a whole. In addition, the Child Health Support Group was set up, in 2000, by Susan Deacon, then Minister for Health and Community Care, to drive forward improvements in children's healthcare services across Scotland. It has developed a Template for Children's Services, setting out the key components of a quality, child-centred health service. The development of a combined and integrated child health service must be multi-agency and multi-professional and must take account of the needs of children on a continuum from the healthy child through to those with special and complex health needs and this will include children with diabetes.

82. Over 1,500 children and young people under 15 years in Scotland have diabetes. Scottish children tend to have poor diabetes control (on average) and there is marked variation across the country. Children and young people should be treated in environments appropriate for their age group. To ensure greater uniformity of care and promote best practice where possible, diabetes services should be clearly identified in the Child Health Strategies of every NHS Board.

83. At an appropriate age there should be a planned transfer of care to the adult diabetes service. Adolescence is a high-risk time for development of complications. Unfortunately, many young people do not see the value of staying in regular touch with health professional advice at this critical time. Service provision for adolescents varies across Scotland.

Table 16 Scottish Study Group for the Care of Diabetes in the Young The Scottish Study Group for the Care of Diabetes in the Young (SSGCDY) is a collaborative group of paediatricians caring for patients with diabetes and adult diabetes specialists with an interest in adolescent care. The group has been responsible for the creation of one of the best diabetes registers of under 15 year old onset in the world and this has resulted in many publications. Hence, we have accurate figures on the incidence and prevalence of type 1 diabetes in Scotland. In the last few years the SSGCDY has conducted Scotland-wide studies of the quality and outcomes of clinical care in children and young people with type 1 diabetes. These studies have demonstrated poor average glycaemic control (HbA1c 9.1%) and a broad variation in control according to centre (8.1-10.2%). The reasons for the latter are being investigated with the hope of improving results across Scotland. Factors Influencing Glycaemic Control in Young People With Type 1 Diabetes in Scotland - a population based study (DIABAUD2), Scottish Study Group, Diabetes Care, 2001; 24(2): 239-244

84. The diagnosis of diabetes in childhood can be traumatic for both the child and his or her family. The support and empathy of healthcare professionals is particularly important at this time. It is also a time when families have to make many adjustments to their lives and absorb large amounts of new information. For this reason, good quality accessible information is crucial.

ACTION POINT

An educational video for children with diabetes and their families will be funded, produced and made available by Autumn 2002. Every new family will be offered a video or DVD.

Ethnic Minority Groups

CSBS Standard 3 - Patient Focus

All people with diabetes have equitable access to information and multidisciplinary programmes of education, which are tailored to individual needs and specific client groups.

85. The prevalence of diabetes, type 2 in particular, is between three and four times higher in communities of Asian and African-Caribbean origin than in those of European origin. People from Asian communities with diabetes have a two-three fold increased risk of heart disease and a four- fold increased risk of renal failure. Diabetes education and health promotion need to be culturally sensitive to the targeted communities e.g. religious and cultural practices governing food and its consumption need to be considered. The use of health service provision by people from ethnic minorities varies significantly from the white population, including registration with and visits to a doctor. Language difficulties may have a particular impact. For a variety of reasons, diabetes remains undiagnosed in large proportions of people with diabetes from ethnic minority groups. Consideration may be required to screening ethnic minority communities as an 'at risk' group to facilitate early diagnosis. There is a need to raise awareness of diabetes by, for example, holding events in appropriate community settings such as religious and cultural centres and elderly day care centres.

ACTION POINT

By September 2003, the Scottish Diabetes Group will publish a report, in conjunction with the Ethnic Minority Resource Centre of the Public Health Institute for Scotland (PHIS), on the epidemiology of diabetes amongst Scotland's ethnic minorities.

86. The development of social inclusion policy by the Scottish Executive over the past four years has included a commitment to tackling health inequalities, including those experienced by people from ethnic minority groups. Our National Health: A plan for action, a plan for change commits the Executive to require NHS Boards 'to ensure that NHS staff are professionally and culturally equipped to meet the distinctive needs of people and family groups from ethnic minority communities'.

Table 17 Cultural Competence The needs and wishes of each individual should be recognised and taken into account as far as possible in planning their health and social care. Services should be sensitive and responsive, taking account of the differing age, gender, socio-economic status, beliefs, ethnicity, culture, religion and personal choices of people with diabetes. These principles have underpinned NHSScotland's Fair for All agenda and guidance. NHSScotland is expected to provide culturally competent services. This means: Respect for others: Understanding, caring, tolerance and responsiveness to the privacy, dignity, values, beliefs, religious concerns and circumstances of others. Partnership: Constructive relationship with patients, carers, members of the public, community organisations, other statutory and voluntary agencies, administrative staff and professional colleagues with rights and responsibilities on both sides. Innovation: The generation of exciting ideas and imaginative ways of delivering better services. Social Justice: A fair approach in developing culturally sensitive services with equitable distribution of opportunities and avoidance of unfair discrimination based on race. Concerns and issues that need to be addressed in service provision for minority ethnic communities include: Flexibility and sensitivity in service provision which will respond to particular needs arising from racial, cultural, linguistic, and religious diversity. Appropriate dissemination of information about available services. Development of staff understanding of the different naming systems, race awareness, religious and cultural observances. Different perceptions of health, mental illness and disability, and appropriate responses to them. Flexibility in catering arrangements to meet diverse dietary requirements. Monitoring and evaluation arrangements. Other concerns revolving around any special factors which need to be taken into consideration in residential, day-care and community settings, and ensuring that families receive appropriate support through advocacy and befriending schemes. Scottish Executive Health Department, Fair for all: Improving the Health of Ethnic Minority Groups and the Wider Community in Scotland, December 2001

Pregnancy and Sexual Health

CSBS Standard 3 - Patient Focus

All people with diabetes have equitable access to information and multidisciplinary programmes of education, which are tailored to individual needs and specific client groups.

CSBS Standard 4 - Clinical Review

All people with diabetes are offered annual or more frequent examination, where clinically indicated, to monitor the management and progression of their condition. There is intervention as required and support for the modification of lifestyle risk factors.

Pregnancy

87. One in every 250 pregnant women has pre-existing diabetes. Gestational diabetes (GDM) - hyperglycaemia with onset or first recognition during pregnancy - occurs in between 2-12% of pregnancies and is a high-risk state for both the woman and her baby. Diabetes increases the risk of pregnancy complications including obstructed labour, intrauterine death and congenital abnormality. An optimal outcome may be obtained from pregnancy if excellent glycaemic control is achieved before and during pregnancy. Good contraceptive advice tailored to individual needs and pre-pregnancy counselling (PPC) are also essential. Attending PPC clinics increases the likelihood of positive outcomes for mothers and their babies. An experienced, specialist team comprising an obstetrician, physician, specialist midwife/nurse and dietitian, with access to other expertise where necessary should provide comprehensive and intensive maternity care. Labour and delivery of women with diabetes should only be undertaken in hospitals where there is a neonatal unit with intensive care facilities.

'I was scared stiff - I had a sense of overpowering responsibility.' 'It was so important to me, the attitude of staff, that they're really interested in me as a person, not a statistic.' 'I worry for my child, as well as my future health.' 'Mothers are under huge psychological pressure.' (Women with diabetes interviewed by Partners in Change)

88. A recent audit involving all 22 consultant-led maternity units in Scotland looked at pregnancies to women with type 1 diabetes and at the implementation of the SIGN guideline on the management of diabetes in pregnancy (now incorporated into SIGN 55). This study found that care during and after pregnancy was in line with recommendations, but that pregnancy planning and peri-conceptual care fell short of the guidelines. This points to an area where improvements are required.

Male sexual health

89. For men, diabetes carries with it a high risk of erectile dysfunction, most frequently the result of neuropathy. It is estimated that up to 40% of men with diabetes are effected by erectile dysfunction. This is more common in the elderly, and it is clear that that erectile dysfunction can have profound health effects by causing low esteem and reduce overall quality of life. The possibility of erectile dysfunction should be considered as part of the annual review. Treatment with counselling and sidenafil or other techniques should be offered. In general, current services for erectile dysfunction are reported to be unsatisfactory. Staff should be better trained and supported to raise sensitive issues such as erectile dysfunction as a matter of course in educating patients about their condition.

'I've been asked umpteen other questions but not about impotence.' 'Nurses are mostly young girls, I think they're embarrassed.' (Men with diabetes discussing impotence interviewed by Partners in Change)

Vulnerable Groups

CSBS Standard 3 - Patient Focus

All people with diabetes have equitable access to information and multidisciplinary programmes of education, which are tailored to individual needs and specific client groups.

90. There are a several groups of people who are at high risk of developing diabetes, and/or who are in a position where diagnosis and management of diabetes is more difficult, or frequently inadequately provided. These groups have been grouped together here in a single building block as groups which will require a targeted and specific approach. By this definition, vulnerable groups include:

• Those living in residential institutions (e.g. nursing homes) where evidence has shown that diabetes care can be less than optimal. This would require specific training of carers and others.
• People living in custodial settings who often have additional psychological and physical problems.
• Ethnic minority groups. There is evidence some ethnic groups have a much higher prevalence of diabetes than others. Targeted advice on prevention and awareness is required.
• Refugees and asylum seekers. It is well recognised that these people often have significant health problems. In addition to increased health care resources there is a need for high quality interpreter facilities. This is particularly important in the areas of education and dietary advice. A targeted approach is required.
• People with learning difficulties. It has already been recognised that people with learning difficulties require increased health care input and several initiatives are under way to improve the situation. In diabetes there is a specific need for health education input both for clients and carers.
• Homeless people. Because of their situation homeless people present particular problems in terms of diagnosis, follow up and access to health care. Work already being undertaken with homeless people should also address the issue of diabetes.
• Adolescents. As discussed elsewhere in this report, many teenagers go through a period of denial and resultant poor diabetic control. The needs of these individuals require to be addressed. Inputs might include ready access to psychological services and specific 'young peoples' clinics with an informal atmosphere and ease of access to health care.

91. Finally and importantly, for many vulnerable groups carers play a vital role. Diabetes services should provide easily accessible advice and support for people caring for those with diabetes.