Supporting Pupils with Diabetes in Schools and Early Years Settings Authors: Rebecca Thompson, Consultant Nurse Deborah Christie, Consultant Clinical Psychologist Peter Hindmarsh, Professor of Paediatric Endocrinology Louise Potts, Clinical Nurse Specialist Kirsty Dring, Clinical Nurse Specialist Children & Young Peoples Diabetes Service, UCLH Agreed by: Darryl Prezens, SEN Team Leader Camden EPS & SEN Team Dr. Martin Bellman, Consultant Paediatrician Royal Free Hospital Medical Advisor to Camden Education Authority Acknowledgements: We would like to thank Dr Julie Edge and the Oxford Children s Diabetes Team for sharing the Oxfordshire Plan for Children & Young People with Diabetes in Schools
Contents: Introduction p.3 Care required within schools and early years settings p.3 Blood glucose testing Insulin calculation (using either a pump or BG bolus calculator) Carbohydrate counting Administration of insulin (using either a pen or pump) Activity and exercise within the school environment Awareness of stresses within the school environment Assistance if unwell Emergency management of severe hypoglycaemia Telling schools about diabetes p.5 Responsibilities for helping children with their medical needs in school p.6 Head of school setting Paed & Adolescent diabetes team Volunteer Parent/carer Child/Young person Involvement of the young person, care required and funding arrangements p.9 The Equality Act (2010) p.11 Transition to insulin pump therapy p.12 Impact of diabetes on cognitive function p.13 Hypoglycaemia and seizures Hyperglycaemia Individual variables Developmental course Impact on functioning at school Cognitive Summary Checklist p.17 2
1.0 Introduction Diabetes is increasing in the adolescent population with over 22,000 young people under the age of 17 in England. Of these, 97% have Type 1 Diabetes (Diabetes UK 2010). Managing the demands of diabetes in daily life can be challenging, with currently only 15.9 % of children in the UK achieving the recommended level of glycaemia control (National Diabetes Audit 2009-10). Having diabetes impacts on care given within schools and early year s settings, with appropriate diabetes care necessary for the child s immediate safety, long term well being, and optimal academic performance. Whilst some older children may be fully independent with their diabetes care, younger children are likely to need support and assistance from school staff during the school day to manage their diabetes on their behalf in the absence of their parents. It is therefore essential that all school staff have an awareness of this medical condition and the child s needs during the school day. 2.0 Care required within schools and early years setting 2.1 Blood glucose testing The effectiveness of diabetes management is assessed through testing the blood glucose level. Blood glucose targets are set at levels designed to protect a student s safety both in the short term on a day to day basis and for their long term health. Persistent hyperglycaemia increases the risk of developing problems within 10 years to the nerves, kidneys, blood vessels and eyes. In general, we expect children and young people to test their blood glucose levels at a minimum of break time, pre lunchtime, pre and post sport and pre leaving school to go home. This is done using a finger prick device (with a self contained drum of lancets). These devices are intended for self monitoring on an individual person only. The results need to be interpreted and actioned upon if outside the target range (either less than 4mmols/L or greater than 14 mmols/l). Details for the individual can be found in the child s individual medical management plan. Some young people using insulin pump therapy also use continuous glucose monitoring. These devices will show current interstitial glucose levels and alarm when glucose levels currently outside of range or predicted to go outside of the target range within a certain time period. 2.2 Insulin calculation (using either a pump or BG bolus calculator) Children and young people need to balance their insulin with the food that they are eating, the current blood glucose level and the exercise that they are undertaking. This can be done automatically using bolus calculators in blood glucose meters (Expert or Insulinx) or using the insulin pump (integrated bolus calculator). Insulin needs to be given with all food, snacks and carbohydrate containing drinks unless it is treatment for hypoglycaemia or being used to prevent hypoglycaemia when undertaking exercise. Details for the individual can be found in the child s individual medical management plan. 3
2.3 Carbohydrate counting Children and young people need to eat a healthy and balanced diet. Foods contain varying amounts of carbohydrate, protein, fat, vitamins, minerals and water. It is the carbohydrate in foods which raises the blood glucose levels most quickly. Therefore, the carbohydrate eaten or drunk needs to be matched with insulin and this is done by carbohydrate counting. Children with diabetes can have either packed lunches or school meals. The parents can calculate the amount of carbohydrate in packed lunches. For children wanting to have school lunches, the parents and dietician from UCLH can help calculate the carbohydrate content using the school menus and contacting the staff providing the school meals. Younger children will need supervision at lunchtimes to ascertain how much of their meal they have eaten and the carbohydrate that it contains. 2.4 Administration of insulin (using either a pen or pump) For a child with diabetes, insulin is delivered as either basal insulin or bolus insulin. The basal insulin is the long acting insulin injection (Levemir or Lantus Glargine) injected in the morning or evening before school. On a pump, basal insulin is the background insulin delivered continuously via the insulin pump. Details for the individual can be found in the child s individual medical management plan. Bolus insulin needs to be given whenever a child is having a meal or snack and whenever the blood glucose level goes higher than the target range. This insulin is given by either a pen device or by pressing buttons on their insulin pump (details for the individual can be found in the child s individual medical management plan). 2.5 Activity and exercise within the school environment It is important for their long term health that children with diabetes partake in physical activity. The impact of activity on blood glucose levels will vary depending on the intensity, duration and how close the activity is to insulin dosages given. Planning is required in relation to additional blood glucose monitoring before and after any activity, consuming additional carbohydrates and if using an insulin pump, decisions relating to whether the pump should be disconnected or temporary basal rates set. 2.6 Awareness of the impact of stresses within the school environment It is well recognised that stress (including anxiety about possible bullying and stress related to exams) can impact on blood glucose levels. This fluctuation may be outside a young person s ability to control and therefore needs to be taken into consideration when assessing performance. High blood glucose levels will make students feel tired, thirsty, need to urinate frequently and generally make concentration difficult. In contrast low blood glucose levels will have a behavioural and cognitive impact both at the time when they are found to be low and for up to 3-4 hours after the level has normalised. Low levels are likely to affect mental flexibility, planning, decision making, attention to detail and rapid responding. 2.7 Assistance if unwell At all ages, children and young people with diabetes may require help to perform a blood glucose test when the blood glucose is low. In addition, many children/young people require a reminder to eat or drink during hypoglycaemia and must not be left 4
unsupervised until such treatment has taken place and the blood glucose value has returned to the normal range. 2.8 Emergency management of severe hypoglycaemia (low blood glucose levels) Hypoglycaemia is often accompanied by signs and symptoms of autonomic activation (trembling, fast heart rate, pallor, sweaty) and/or neurological dysfunction (difficulty concentrating, blurred vision, difficulty hearing, slurred speech, poor judgement, problems with short term memory). The absolute blood glucose level at which signs and symptoms occur may vary according to the individual. Children may also exhibit behavioural or mood changes when their blood glucose fall but remain within or above normal range. The severity of hypoglycaemic episodes can be described on a scale of mild, moderate and severe. In severe hypoglycaemia, the child may have altered mental status, cannot assist in their own care, and may be semiconscious or unconscious. Urgent treatment is required but it is unsafe to give any treatment by mouth. In this instance the school setting should ring 999 and then contact the parents. If a student has experienced severe hypoglycaemia within the previous six month period, UCLH recommend that the school keep Glucagon on the premises and volunteers or first aiders are trained how to give this. 3.0 Telling schools about diabetes The child s parents should inform the school about having diabetes as soon as possible, so that arrangements can be put in place. Parents may wish to arrange an introductory meeting with their chosen school s head teacher before their child enrols or when the child first develops diabetes (DfES / DH 2005). Together with the parents, the relevant school staff (for example head teacher, nominated school staff, Special Educational Needs staff) need to draw up a health care plan (or school medical management plan) that sets out what support a child will need in school. This should include: Details of the prescribed insulin, including the dose to be given, the procedure for injecting via a pen device or an insulin pump. Details of who will help the child with medication and blood glucose testing and where these tasks can be undertaken safely, ensuring the dignity of the child/young person is maintained. Descriptions of the child s symptoms of hypoglycaemia and hyperglycaemia and what staff will do if either of these occurs. The plan should also make clear when a parent or carer should be contacted, and under what circumstances an ambulance should be called. Details of when a child needs to eat meals and snacks. If a child needs to go to the front of the lunch queue or have other arrangements at lunchtime these should be noted. The things that should be done before, during, and after PE lessons. This might include the need for blood glucose testing, a snack or correction bolus if necessary and disconnecting a pump (if using one). 5
Once people involved in drawing up this plan are happy, the plan should be signed by the school, the parents and a member of the child s diabetes team. This should then be circulated to all relevant members of staff. This should be updated on an annual basis. The diabetes team at UCLH can provide a blank template for both children on multiple daily injections and insulin pumps and these can be downloaded from the UCLH website www.uclh.nhs.uk/t1 4.0 Responsibilities for helping children with their medical needs in school: 4.1 Head of School Setting We recommend that the Head of the School or Early Years setting will be responsible for: Ensuring that all school/setting employees are aware of a child having diabetes, being able to obtain the child s individual medical management plan in the school setting and know how to assist them when necessary in a diabetes emergency (especially hypoglycaemia). A minimum of two named volunteers from the establishment are trained in the management of each individual child/young person s diabetes. These volunteers may be requested to supervise or perform blood glucose testing, to supervise or perform a calculation of an insulin dose, to supervise or perform insulin injections using an insulin pen and/or to supervise or perform giving an insulin dose using a subcutaneous insulin infusion pump, depending on the agreed School Medical Care plan. These volunteers will be identified by the Head of the establishment and will be trained by attending a diabetes workshop at UCLH. Establishing the safe storage of diabetes containers (containing, if necessary, insulin injection devices as well as hypoglycaemic treatment), and disposal of used sharps. Ensuring that the establishment and its employees do not discriminate against young people with diabetes, thereby enabling young people with diabetes to participate fully in all aspects of school/setting life, including physical and extracurricular activities. 4.2 Paediatric/Adolescent Diabetes team (UCLH) The diabetes nursing team will offer training to the volunteers from the school setting, to include (as required by the Individual Medical Care Plan) training on the individual care plan teaching of supervision or performing of blood tests teaching of supervision or performing calculation of insulin doses teaching of supervision or performing insulin injections teaching of supervision or performing of administration of an insulin dose using an insulin pump assess competency of each individual volunteer in required tasks 6
help with planning of school residential trips Annual training will be provided by UCLH in September at the start of the new term. Up to two volunteers from each school will be invited to attend a 3 hour workshop at UCLH. This will include an overview of diabetes; the treatment of hypoglycaemia and hyperglycaemia; managing exercise, when to seek help; documentation and training requirements; delivering insulin and monitoring blood glucose. The diabetes team will provide certification of completion of training. Additional training can be provided at UCLH, on request of the school. 4.3 Volunteer In this context the term volunteer refers to a school/setting or Local Authority employee who is willing to actively support a young person with diabetes and has been selected and appointed to undertake such duties. The volunteer will be responsible for either carrying out or supervising blood glucose testing just before a meal or snack according to the training received. The volunteer will be responsible for either carrying out or supervising insulin dose calculation with a meal according to the training received. The volunteer will then be responsible for either carrying out or supervising the meal-time insulin via pen or insulin pump according to the training received Where volunteers are being trained, they will be allowed as much time as they wish watching a parent carrying out the tasks, before taking over themselves. UCLH would recommend a period of 2 weeks, with the volunteer observing the parent for one week and then the parent observing the volunteer for a further week. 4.4 Parent/Carer A parent or carer who has legal responsibility for the young person who has diabetes will liaise with the Head of the School/establishment and the Clinical Nurse Specialist (CNS) to provide the school/establishment/ setting with adequate, up to date information about the young person s diabetes and treatment. They will be responsible for providing All materials and equipment necessary for diabetes care tasks, including blood glucose testing and insulin administration (if needed). The parent/carer is responsible for the maintenance of the blood glucose testing equipment (i.e. cleaning and performing controlled testing per the manufacturer s instructions). Supplies to treat hypoglycaemia, including a source of glucose and a supply of Glucogel. Information about the student s meal/snack schedule. The parent should work with the school/setting to coordinate this schedule with that of the other children/young people as closely as possible. For young children, instructions should be given for when food is provided during school/setting parties and other activities. 7
Emergency phone numbers for the parent/guardians and the diabetes team so that school/establishment personnel can make contact in times of emergency or to answer queries. Calculating carbohydrate content of school meals and snacks Where volunteers are being trained to supervise or perform any diabetes tasks the parent or carer will sign the Individual Medical Care Plan to show that they have agreed to this arrangement. 4.5 Child/Young Person Children and young people should be allowed to manage their own diabetes at school/setting with parental consent, to the extent that is appropriate for the student s developmental stage and his or her experience with diabetes. The extent of the student s ability to participate in diabetes care should be risk assessed and agreed upon by the school/setting personnel, the parent/carer and the diabetes CNS. The ages at which children/young people are able to perform self-care tasks are very individual and variable, and a child/young person s capabilities and willingness to provide self-care should be acknowledged in the Individual Medical Care Plan. 8
In general UCLH recommend the following: Children aged 5 years and under Involvement of the young person The preschool child is unable to perform any diabetes tasks. They will need a named adult to undertake these tasks in the absence of their parents. Care required A child will need: An adult to administer insulin (via a pen or pump) An adult to carry out, monitor, record and act on blood glucose readings Additional observation and/or intermittent problem solving interventions when the signs and symptoms of diabetes ensue Supervision will be needed to assess for signs and symptoms of hypo and hyperglycaemia Supervision at meal or snack times to assess how much carbohydrate consumed Staff should be trained in interventions required if a young person is hypoglycaemic Funding 1:1 support. This can be funded by statementing or complex medical needs panels Primary school Aged 6 years and up The primary school aged child is unable to manage independently. The care is such that a child requires adult support to manage their diabetes in school. They should be expected to cooperate with staff in ensuring that diabetes tasks are performed within school (unless hypoglycaemic). A child will need: An adult to administer insulin (via a pen or pump) An adult to monitor, record and act on blood glucose readings and in some cases to carry out blood glucose testing. Supervision at meal or snack times to assess how much carbohydrate consumed Action Plus It is recognised that depending on the authority, this provides 15-20 hours of funded support. UCLH recommends that these hours are viewed as a total amount over a number of years, enabling increased support at the beginning and then scaling down support as a child becomes more 9
Adult supervision if the child is hypo and hyperglycaemic unaware capable of taking on some of the tasks of diabetes. Secondary school The student requires regular but time limited adult support to supervise/oversee largely independent management of their diabetes Staff should be trained in interventions required if a young person is hypoglycaemic A young person may need: Reminders to administer insulin Staff should be trained in interventions required if a young person is hypoglycaemic Support to allow blood glucose testing in class More intensive support and supervision for periods of time if the young person is struggling to manage diabetes 10
5.0 Equality Act (2010) The equality act says that types of discrimination are illegal, defining discrimination as when a person with a disability is treated less favourably, because of his or her disability, than a person who does not have a disability. The Equality Act 2010 defines a disability as a 'physical or mental impairment' that has 'a substantial and long-term adverse effect' on an individual s ability to carry out 'normal day-to-day activities'. A substantial adverse effect is a negative effect that is more than trivial, and the effect is long-term if it has lasted or is expected to last for more than twelve months. Whilst only a court or tribunal can decide whether a person with diabetes is covered by the definition, in many cases diabetes is covered by the definition in the Act. Education providers have a duty to make reasonable adjustment for people with disabilities and failure to make reasonable adjustments is a form of discrimination. The Act covers all schools in England, including maintained (non-fee paying) and fee-paying schools. Further information can be found in Diabetes UK (2011) Education and diabetes: Your rights in early year s settings, schools, and further and higher education http://www.diabetes.org.uk/documents/advocacy/advocacy%20pack%20edu cation.pdf 11
6.0 Transition to Insulin pump therapy UCLH is a service that offers insulin pump therapy. In line with NICE guidelines this will be offered at diagnosis to children under the age of 5 years. For those children already diagnosed with diabetes, insulin pump therapy can be initiated at any point in the year, once the child and family meet a number of criteria. In order to ensure that systems can be put into place to provide adequate support within early years and school settings, the following algorithm will be followed. Newly diagnosed and started on CSII at diagnosis Decision to transfer from MDI to CSII Parents inform school of diagnosis together with an anticipated return to school date Parents to inform school that CSII is to be started at least one month prior to CSII Head teacher identifies 2 volunteers to support the child Volunteers attend either a one day pump day at UCLH or CNS will visit the school Volunteers to attend (at min) the second day of pump school at UCLH Parents responsible to support volunteers at the school for the first one to two weeks School medical management plan to be completed and signed off within 2 weeks of CSII initiation Volunteers to attend annual training workshop at UCLH 12
7.0 Diabetes and cognitive function There are a number of diabetes related variables which have the potential to impact on brain development and as a consequence, on neuropsychological functioning. These variables operate independently of one another and have different pathological mechanisms. The young brain is a dynamic organism with specific structural and functional developments occurring at predetermined times and, as with any brain insult, the consequences vary depending on the timing. In children, early age at the onset of diabetes and a history of severe hypoglycemia have emerged as the most consistent predictors of adverse neuropsychological effects. Hyperglycemia effects have been more difficult to investigate as HbA1c is the most commonly used index and this only provides a two to three month record of metabolic control. Overall differences in intellectual functioning between diabetes groups and controls tend to be small, with most children continuing to function within the average range. However the differences are enough to impact on learning in the classroom and it is likely that the cohorts studied include some children who do significantly more poorly. The subtle nature of the differences also means that children s difficulties are at greater risk of being overlooked. 7.1 Hypoglycemia and seizures Approximately 31% of children with type one diabetes experience hypoglycemia at some point due to the difficulty in balancing insulin injections with activity and diet in a growing child. Very young children may be unable to identify symptoms or to verbalise them, and as activity levels are harder to predict, they are at greater risk of severe hypoglycemic episodes. This is especially problematic as the early years are also the time of most rapid brain development with critical periods for the development of various skills and abilities. Learning and memory are the abilities most likely to be affected by hypoglycaemia as well as motor speed, visuospatial skills, attention, memory and executive function. Mild symptomatic or asymptomatic hypoglycemic episodes which all children with diabetes experience may cause transient cognitive deficits especially in planning and cognitive flexibility, sustained attention and reaction time with a cumulative, negative effect on the child s performance. Children diagnosed early may have more seizures due to the behavioural and medical challenges of disease management in young children. Seizures are related to smallest overall cognitive effects but may be greater for children who have chronic poor metabolic control who have been shown to have lower scores on psychometric tests in individual studies. 7.2 Hyperglycemia Repeated hyperglycemia associated with persistent raised HbA1C contributes 13
to increased risk of complications of diabetes, including retinopathy, nephropathy and neuropathy. Extreme hyperglycemia due to lack of insulin can cause diabetic ketoacidosis (DKA), which can lead to acute illness, loss of consciousness and even coma or death. Severe DKA may result in central nervous system (CNS) damage. Whilst it was originally thought that non-dka episodes of hyperglycemia were likely to have little or no effect on cognitive function, research is now beginning to suggest that there may indeed be consequences through disruption of brain structures and neurotransmitter regulation in the developing brain. Children with elevated HbA1c levels had problems with memory and executive functioning, fine motor control and motor reaction tasks. Hyperglycemia was also found to specifically affect verbal intelligence and fluid (spatial) intelligence, information processing speed and sustained attention. 7.3 Individual variables - Age at onset of diabetes Hypoglycaemia and hyperglycaemia have different effects on cognitive function determined partly by the amount of exposure during development but not age of onset. The most potent predictor of learning is disease duration Cumulative and chronic exposure to the metabolic abnormalities typical of diabetes alone is a major risk factor related to poorer learning over time. Episodes of severe hypoglycaemia significantly predicted lower verbal and Full Scale IQ at 6 years after diagnosis. Age of exposure to hypoglycaemic events was related to reduced verbal and visual delayed recall and spatial intelligence, rather than age at onset of diabetes per se. 7.4 Developmental course The brain is thought to be particularly vulnerable to the effects of hypoglycemia during the neonatal period. Neurodevelopmental outcome can be affected even after moderate neonatal hypoglycemia and prolonged or repeated episodes of profound neonatal hypoglycemia may lead to severe learning disability and epilepsy. Although children with diabetes are usually older when they experience hypoglycemia it appears that cognitive effects, although mild, appear relatively quickly following diagnosis. Hypoglycaemia experienced early in development is more harmful to neural systems underlying delayed memory than hypoglycaemia later in life. Puberty is considered an independent risk factor for the complications of diabetes due to the increased insulin resistance associated with gonadal and adrenal hormone changes at this time which may lead to increased risk of hyperglycaemia. Executive function deficits are seen in adolescents with diabetes, regardless of the age of onset. Those who developed diabetes 14
during later childhood and adolescence also showed poorer scores on tests of vocabulary and general knowledge. 7.5 Impact on functioning at school Although boys and girls with diabetes have been reported to achieve IQ scores in the average to high average ranges the group mean was still three to seven points lower than the control group. These mild difficulties may have a cumulative effect and in particular may create subtle difficulties for specific groups of children. It is unclear whether the impact on intelligence, memory and other cognitive functions are reflected in everyday cognitive, social or academic functioning. Mild hypoglycemic episodes have an influence on attention, psychomotor speed and memory. Teachers may not be aware if a child is experiencing hypoglycemic attention difficulties and fail to provide appropriate support. There is evidence of poorer school achievement among children with diabetes, especially in reading and spelling. Children with diabetes, and especially those who had experienced severe hypoglycemia, had more learning difficulties reported by parents and needed more part time special education than unaffected children. Up to one third of boys with diabetes are reported by their parents to have had learning difficulties at some point in their school career. Seventeen per cent received a formal diagnosis of learning difficulty or hyperactivity and twenty nine percent had resource room instruction at some point. Forty per cent of the boys with diabetes had either had special input, repeated a school year, or both. Four per cent of girls had repeated a year and twelve percent had special intervention. The number of girls receiving special instruction was double that of those without diabetes. There may be both direct and indirect effects on day to day functioning that become apparent over time. It is essential therefore to monitor and detect intra-individual change. It is also important to make sure that while there may be progress over time, it is sufficient and adequate progress. 7.6 Summary The majority of children and young people fail to achieve adequate metabolic control. As a result their developing brains are vulnerable to frank neurological insult through hypoglycaemia, hyperglycaemia and ketoacidosis. Health Care teams, teachers, parents and young people should be aware of the potential cognitive vulnerability associated with hypoglycaemic seizures and chronic hyperglycaemia. Early detection of minor difficulties should be a priority with assessment of cognitive skills as essential to the day to day management of diabetes as teaching carbohydrate counting and insulin dose adjustment. Early onset of diabetes is associated with the greatest impact on cognitive function in children. It is unclear whether the association is due to the high 15
risk of recurrent severe hypoglycaemia in young children. Longer disease duration is another predictor of impairment. Further research that incorporates pathophysiological measures, cognitive measures and measure of daily functioning on a longitudinal basis is needed. Whilst frank hypoglycaemia and hyperglycemias are currently targeted in research, improvement in continuous glucose monitoring may allow for the inclusion of asymptomatic or nocturnal hypoglycaemia as further disease variables that may contribute to cognitive difficulties. It is important to monitor children with diabetes to ensure that subtle learning difficulties identified do not take a cumulative educational or psychological toll. 16
8.0 CHECKLIST You may find the following checklist helpful to review whether everything is in place, to support the child or young person in your school / early year s settings: Has the school medical management plan been completed - a template can be downloaded from the UCLH web page. Has the school medical management plan been agreed by the parents, school and diabetes team? Does there need to be any risk assessment completed e.g. disposal of sharps? Is there a nominated individual(s) to support with care required? Have the nominated individual(s) accessed training to enable them to support the young person appropriately? Is there a system to cascade important information to all relevant staff members? Are there any staffing implications? Have learning needs been reviewed? Have the parents/carers provided emergency supplies to be available on site? The UCLH diabetes nursing team are happy to be contacted to discuss any questions or concerns. Their contact details are: Email: childrensdiabetesnurses@uclh.nhs.uk Telephone: 020 344 79364 Webpage: www.uclh.nhs.uk/t1 17
Children and Young People s Diabetes Service University College London Hospital NHS Foundation Trust 6 th Floor, Central 250 Euston Road London, NW1 2PQ 020 344 79364 www.uclh.nhs.uk/t1 Date: December 2013