A Guide for Parents and Carers of Children with Type 1 Diabetes

With careful management a person with Type 1 Diabetes can lead a healthy and full life. Type 1 Diabetes develops when insulin production slows or stops and treatment is by means of insulin injections. This is a daunting prospect for newly diagnosed children and their parents. The main objective of the Diabetes UK Support Holidays is to help children to understand their condition and learn how they can live a full and active life.

While on the Diabetes UK support holiday your child will learn more about how to live with diabetes from Diabetes UK volunteers and healthcare professionals who will provide the daily care for your child. The main purpose of this report is to enable you to take a more active role in caring for your child. This report also discusses the long term health problems that can occur as a result of poor management of diabetes and looks at how the NHS is striving to improve diabetes care for children.

Education and Learning Experience

Diabetes Today

There are two main types of diabetes, Type 1 and Type 2. Type 2 diabetes is largely caused by poor lifestyle choices and being overweight. Type 1 diabetes affects otherwise fit and healthy individuals. Its cause is still unknown, however, studies suggest that it could be triggered by a viral infection during childhood. (Banks, 2006, p51). In 2009 NHS Diabetes found that a majority of diabetes in children is Type 1 Diabetes (NHS Diabetes, March 2009).

If poorly managed type 1 diabetes can lead to serious health problems such as ketoacidosis, hypoglycaemia in the short term and heart disease, liver disease and blindness in the long term. It is for this reason that Diabetes UK actively encourages children and their parents to understand safe management of diabetes.


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Benefits and Positive Impact of the Diabetes UK Holiday

The holiday provides an opportunity for your child to meet other diabetic children. As well as making friends this can help them to come to terms with diabetes and understand that they are not alone. This can boost self-esteem and your child will become more confident and feel empowered to take an active role in managing their condition and this is beneficial for the whole family.

Diabetes Care for Children – The Healthcare Team

Partnerships and Shared Care

Diabetes care works on a principal of partnerships and shared care. This means that all parties involved are responsible for the care of the child. The child is the centre of the circle of care and should be considered an expert patient.

By learning to recognise the symptoms and learning to self manage their condition as early as possible they will be in a much stronger position to spot the signs of more serious problems. By working with your child you will feel more empowered to ensure that your child stays healthy.

The Diabetes Support Network

Everyone who has diabetes has an extensive support network. At the centre of this network is the patient. Parents play a vital role in managing a child’s diabetes. Other carers include doctors, nurses and dieticians. The Diabetes UK holiday will have representatives of these caring professionals on hand to monitor and advise your child at all times.

Doctors / diabetologists are the most senior medical professional in the team. Doctors analyse test results and by speaking with the other team members chose the course of medical treatment for the patient. They also carry out annual reviews and refer patients onto other specialists when required. Their main role is to ensure that complications are spotted early and action is taken to mitigate long term damage.

Diabetes specialist nurses will provide the day to day care for your child as well as providing educational and moral support. They work to ensure that the doctors prescription is carried out and to ensure that the family is managing the condition effectively.


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Dieticians are solely concerned with the diet of your child. The main aim of a dietician is to ensure that your child eats a healthy diet that helps to maintain blood sugar levels. With Type 1 diabetes it is vital to ensure that meals are consistent and on time, as rapid reductions in glucose can occur if insulin levels remain high.

The National Service Framework (NSF) for Diabetes

The National Service Framework was set up to ensure that there is a consistent and adequate standard of care across the UK for patients with diabetes. It was published in 2001 and set out aims and objectives for improving the quality of care given to children and adults.

There are two standards which affect children. These standards have the specific aim of ensuring that children with diabetes are well supported to ensure that by the time they become adults they have the knowledge and tools to effectively self manage their condition.

Standard 5:

All children and young people with diabetes will receive consistently high-quality care and they, with their families and others involved in their day-to-day care, will be supported to optimise the control of their blood glucose and their physical, psychological, intellectual, educational and social development.

Standard 6:

All young people with diabetes will experience a smooth transition of care from paediatric diabetes services, whether hospital or community-based, either directly or via a young people’s clinic. The transition will be organised in partnership with each individual and at an age appropriate agreed with them.

(Department of Health, 2001)

The Department of Health is taking the care of children and young people with diabetes very seriously. A child’s long-term health, social development and education are all dependant on the careful management of the condition. For this reason parents need to understand the issues and play an active role in the care of their children.

Areas that have been improved upon as a result of the NSF include improved education for school staff and teachers and improvements in the way children are transferred from paediatric care to adult care as they pass through adolescence. (Department of Health, 2011)

As children pass through adolescence they will leave pediatric care and move into adult care. Research has shown that this transition can often result in missed appointments and a reduction in care. It is important to be ready to support your child as they pass from pediatric care and into adult care. The more empowered your child is and the more in control of treatment, the more likely that their transition will be smooth (Nakhla, 2009 – quoted in, Daneman, 2011).

Living with Diabetes

Type 1 Diabetes and Physical Development

When diabetes is well managed a child can live an equally active life and participate in sports and athletics and still perform at the highest levels. Steve Redgrave was diagnosed with Type 2 diabetes in 1997 and then went on to win Gold at the Sydney Olympic Games in 2000.

“There is no reason why you still can’t achieve your dreams but it does take a lot of patience to work out the right routine.” Sir Steve Redgrave, Diabetes UK (2011a).

For example, Yusuf Idris plays badminton at a competitive level and to prevent risk of hypoglycaemia he does not take  his lunch time insulin, eats more and also carries snacks to eat at the end of each game (Banks, 2006, Ch 2).

The Importance of Good Diabetes Management

Diabetes can lead to both short term problems and long term complications, however, all complications can be avoided with optimum glucose control.

Short Term Problems of High Glucose Levels

If diabetes is left untreated blood glucose levels will rise. In response to the lack of sugar for the brain, the body starts to breakdown fat tissue to provide fuel which leads to a build up of  acidic ketones. If ketones reach high levels, ketocidosis occurs which can cause loss of consciousness, vomiting and dehydration. Also in young children brain swelling and coma can occur which can be fatal.

Good insulin management reduces the risk of developing ketoacidosis occurring. However, It can still occur when diabetes is managed well at times of illness when there is an increase in blood sugar levels (Banks, 2006, Ch 2).

Short-term problems of low glucose levels

A rapid reduction in blood glucose levels can occur if a meal is missed or if a child is more active than normal. While insulin is present in the system it will cause blood sugar levels to fall. If blood sugar levels fall too low, then there is a risk of hypoglycaemia which can cause unconsciousness (Banks, 2006, Ch 7). Although usually a person will recover from a temporary loss of consciousness this should never be left to chance. A carer should apply a glucose gel to the gums of the patient who is still conscious or inject glucogon if a patient loses consciousness.

A person with diabetes will often learn to spot the signs of problems before unconsciousness occurs. Symptoms include confusion, aggressiveness, increased sweating, draining of colour from the face. If any if the symptoms occur then the first action is to take a sugary drink and then have something to eat, ideally a sandwich, biscuits or fruit to help raise blood sugar levels.

Long-term problems of high glucose levels

It is the complications that are caused by prolonged periods of elevated glucose that are most well know. Although few children will ever develop signs of long-term damage it is important to understand what can happen if diabetes is not well managed.

High glucose levels causes micro-vascular and macro-vascular damage. This is damage to the small blood vessels and larger veins and arteries.

Microvascular damage

Microvascular damage affects the nervous system, kidneys and eyes (retinopathy), which makes an annual eye test important.

A study found that good glucose management “dramatically reduced the risk of developing diabetes complications involving small blood vessels” (Diabetes Control and Complications Trial Research Group, DCCT, 1993).

Macrovascular damage

Macrovascular damage is the biggest cause of death in people with diabetes as it is cause of heart attacks and strokes.

The Importance of a Healthy Lifestyle

It is recommended that children take 60 minutes of exercise every day outside of school (NHS, 2011). Regular exercise helps to maintain a healthy weight as well as regulate blood glucose levels. Exercise also helps to lower blood pressure and reduce LDL (bad cholesterol levels) which can increase long term risk of developing heart disease.

However, it is vital that blood glucose is monitored as exercise can cause it to drop too fast resulting in hypoglycaemia. It is important that people with diabetes wear something to identify them as being diabetic. Bracelets are popular as they can be discrete but easy to find in an emergency (Diabetes UK, 2011b).

You may have to consider making changes to your family routines and diet to accommodate the needs of your child, such as changing cooking methods and increasing family activities.

Considerations for the Future

When your child becomes a teenager their attitudes towards diabetes may change. Studies have shown that teenagers who receive the support of family fare better (Banks, 2006, Ch 10).

Alcohol consumption can affect medication and combined with missed insulin injections, it is one of the biggest causes of hypos in young adults. Girls should also be made aware early of the dangers of high glucose during the early stages of pregnancy.

Conclusion

Type 1 Diabetes is an illness that can be successfully managed. With family support and medical assistance a child can live a healthy and full life and need not miss out on any of the pleasures of childhood.

Improvements are constantly being made into the care of children and adults with diabetes and organisations such as Diabetes UK as well as Diabetes specialist nurses, who play an active role in ensuring that patients are aware of changes.

References and Web Resources

Banks, 2006. Living with Diabetes, Milton Keynes, The Open University.

NHS (2011). “How much exercise should my child do?” [online] Available from: http://www.nhs.uk/chq/Pages/819.aspx?CategoryID=52&SubCategoryID=142 (Accessed September 2011)

Department of Health, 2001 “National Service Framework for Diabetes: Delivery Strategy” [online] Available from:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4032823.pdf Published December 2001. (Accessed September 2011)

Department of Health (2011) “Clinical care of children and young people with diabetes”, [online] Available from:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4902159
(Accessed September 2011)

Department of Health (2011)  “Six years on: delivering the Diabetes National Service Framework” [online] Available from: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_112511.pdf
(Accessed September 2011)

National Institute for Health and Clinical Excellence (2011) “Diabetes in adults quality standard” [online] Available from:
http://www.nice.org.uk/guidance/qualitystandards/diabetesinadults/diabetesinadultsqualitystandard.jsp
(Accessed September 2011)

Royal College of Paediatrics and Child Health (2009)  “Growing up with Diabetes:  children and young people with diabetes in England” [online] Available from:
http://www.rcpch.ac.uk/sites/default/files/Growing_up_with_Diabetes_Report.pdf

Diabetes UK., (2011a).   “Sir Steve Redgrave CBE – Diabetes UK supporter”
[online].  Available from:
http://www.diabetes.org.uk/Get_involved/Celebrity-supporters/Steve-/
(Accessed September 2011)

Diabetes UK., (2011b).  “Living with diabetes”
[online].  Available from:
http://www.diabetes.org.uk/FAQ/Living-with-diabetes-questions/#anchor_4968
(Accessed September 2011)

Diabetes UK., (2011c).   “Diabetic drivers could be banned by EU rule change”
[online].  Available from:
http://www.diabetes.co.uk/news/2011/Aug/diabetic-drivers-could-be-banned-by-eu-rule-change-99559461.html
(Accessed September 2011)

Nakhla M, Daneman D, To T, Paradis G, Guttmann A (2009): Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatrics 124:E1134–E1141, 2009.

Denis Daneman, MBBCh, FRCPC and Meranda Nakhla (2011) Moving On: Transition of Teens With Type 1 Diabetes to Adult Care. [online].  Available from:
http://spectrum.diabetesjournals.org/content/24/1/14.full?patientinform-links=yes&legid=diaspect;24/1/14#ref-12

Diabetes Control and Complications Trial Research Group (DCCT) (1993) ‘The effects of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus’, New England Journal of Medicine,  329  (14), pp. 977–986. cited in Banks (2006).

UK Prospective Diabetes Study (UKPDS) (1998) ‘Group Intensive blood
glucose control with sulphonylureas or insulin compared with conventional
treatment and risk of complications in patients with type 2 diabetes (UKPDS
33)’, Lancet, 352, pp. 837–853. cited in Banks (2006).

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