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Diabetes in schools – parents' responsibilities

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As a parent, you should always have the main responsibility for your child’s health at school, but looking after a child with Type 1 diabetes at school isn’t just the responsibility of one person. Everyone has a role to play – you, your child (if they’re old enough and want to), their school, and their paediatric diabetes team, particularly your Paediatric Diabetes Specialist Nurse (PDSN).

However, there are certain things that you as a parent need to do, like keeping the school up to date with your child’s diabetes management, making sure they’ve got the equipment they need and giving consent for any medical treatment to be given at school. 

On this page you will find support and information on: 

Let your child’s school know

Generally it will be you who tells your child’s school about their diabetes, but it might be your PDSN. If your child is newly diagnosed, you should inform school as soon as possible. If they are starting a new school it should be as soon as they have their place confirmed.

Attend a meeting with school

The purpose of meeting with the school is to make sure your child's school understands what support your child needs and how it should be provided. The initial meeting should focus on all the points you need to include in your Individual Healthcare Plan (IHP), though the IHP will go into more specific detail. Make sure that you know who will be taking notes at the meeting, and who will write the IHP (usually your PDSN).

Preparing for a meeting

Before attending, it is important to prepare for any meeting with your child’s school. There is a lot to discuss and there are plenty of things to consider. Make a list to refer to.

Begin by thinking about your child’s school day, or how you think it may be if they are just starting. Think also about what you do for your child and what they can do for themselves. Having an idea of exactly what support your child will need from the school before you meet will be really helpful for an effective meeting.

Read any of the schools existing policies that are of relevance, such as any Equality/Inclusion Policy. These can often be found on the school’s website, though should also be available on request. If you can, take a look at any relevant guidance/legislation, for example the Equality Act 2010 (England, Scotland and Wales), Disability Discrimination Act (Northern Ireland) and any nation specific guidance, that would also be helpful.

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Who should be at the meeting?

  • You/your partner or both.
  • Your child. Depending on your child’s age, they may wish to attend – for younger children this may not be helpful.
  • Your child’s Paediatric Diabetes Specialist Nurse (PDSN). If your child’s PDSN can attend this will be very helpful. If the PDSN is going with you, be sure to discuss your thoughts beforehand to ensure neither of you contradict the other in the meeting. If your PDSN cannot attend, do still speak with them beforehand as they will have experience that may be of help.
  • If your child is moving from primary to secondary school or one school to another, it may also be helpful if the person who supported them at their previous school can attend – this may help to give a perspective from a school’s point of view which the new school may find helpful.
  • The most relevant member of school staff. This may be the Headteacher or Deputy Head, SENCO/ALNCO/Special Educational Needs Advisor, Head of Year or other appropriate staff member. It is important that whoever attends on behalf of the school is aware of the relevant policies and be in a position to make agreements on the school’s behalf.
  • After school club/breakfast club staff (if relevant). This will help ensure that the child your care receives at an after school or breakfast club is consistent with the care they get during school hours.

Tips for a productive meeting

  • Gather the information you need to support the points you want to make. This could be notes on particular issues, any relevant school policies, guidance or legislation as well as the questions you would like answered.
  • Don’t be afraid to ask for what you want and try to make your points clearly and reasonably. For example, use “I” statements, for example, instead of saying, “You are doing this wrong”, you could try saying, “I have a concern”.
  • Recognise that diabetes may be new to school staff. Show that you appreciate that there is a lot to learn about diabetes and looking after a child diabetes in school will take some getting used to. 
  • Acknowledge where things have gone well and support has been provided. It is always good to hear positive feedback and shows that you appreciate the school’s efforts to date.
  • Listen to what the other person has to say.
  • It can be difficult to focus on the meeting and the issues you want to discuss if you feel the other person’s behaviour is unhelpful or even rude. Concentrate on the issues and try not to be sidetracked.

Play a part in drawing up your child’s Individual Healthcare Plan (IHP)

As a parent, you have a key role in developing your child’s IHP and reviewing it when necessary. You should also carry out anything that you have agreed to in the IHP eg providing insulin or equipment.

Read more about IHP

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Provide written permission for insulin to be given by school staff, or self-administered by your child

Your child’s head teacher must also give written permission for this.

Help train and support school staff

You shouldn’t have the sole responsibility for training school staff, but you may want to help support this process. In most cases training will come from your child’s PDSN, and could either be in the school site or in the hospital in which your PDSN is based. Your role is more around supporting your PDSN (in whatever way has been agreed) and giving school specific advice about your child.

At the meeting with school, you, your PDSN and school staff will decide the following:

  • Who will receive the training? Any members of staff who will be responsible for supporting your child and any of those who will cover in their absence.
  • When will this training take place? This needs to be agreed by all those involved, but a date for when this must be completed by can be set even if no definitive date for the actual training can be arranged at the meeting. Allow good time prior to your child’s start/return to school to ensure any problems that may arise can be dealt with.
  • What training is required? This may depend on your child’s needs but may include the following subjects.

Blood Glucose Monitoring

School staff will need to know:

  • Why is this important? It may be helpful to explain this to school staff, so they are aware of what this tells you/your child and how this helps with decision making regarding treatment.
  • What are the target ranges for your child? Explain action that will be required if blood glucose levels fall outside of these targets.
  • Who will carry out the monitoring? This may be a staff member or your child themselves.
  • Where will monitoring be carried out? You or your child may prefer to keep their monitor with them and test wherever they are, or for testing to be carried out in a designated room. Your thoughts and those of the school may disagree on this point, so be prepared to explain exactly why your suggestion is best for your child.

Insulin

School staff will need to know:

  • How is this administered? Injection or pump?
  • Who will administer this? Can your child do this themselves or will they require assistance? If they need assistance, what specifically? Some children may need someone else to administer their insulin whilst others may just need reminding/someone to double check dosage.
  • When will your child need insulin? As well as mealtimes/snack times, include corrections.

Carbohydrate counting (carb counting)

Think about:

  • Who will do this? If your child takes a packed lunch, you may do this yourself and label the food. If eating school meals, you may require the school canteen to provide this information to your child/the relevant member of staff. Your child may be able to calculate the insulin dose required themselves or they may need someone to do it for them.An important point to remember here is that schools often use catering companies who may have a contract with the local authority rather than the school directly. It would be reasonable to ask that the school liaise with the relevant local authority office to obtain this information.
  • How do you carb count? A brief overview of this would be helpful, but your PDSN can go into more detail when providing training to staff and in your child’s healthcare plan.

Find out more about carb counting

Hypo and hyperglycaemia

Make sure school staff know:

  • Reasons why your child might have a hypo. Eg not eating enough, unplanned physical activity, having too much insulin.
  • Reasons why your child might have a hyper. Eg eating more than usual, not being as active as expected, pump failure, being unwell.
  • What are your child’s hypo/hyper symptoms? In addition to the symptoms, can your child recognise these themselves, or do they need others to recognise for them?
  • How a hypo or hyper should be treated. Including your child’s preferred hypo treatments, correction doses for a hyper and when you would want to be contacted.

Communicate with school

You should provide your child’s school with sufficient and up-to-date information about your child’s diabetes and how it’s managed. This should include what help they need, when their needs or treatment change and any day to day events that might affect their diabetes at school.

You and school staff will need to find a way of communicating with each other that works for both of you. This may be through a communication book in which staff detail any relevant events and in which you detail any relevant information for the school.

There may also be times during the school day when you might need to be called, so make sure school staff know the circumstances in which you would want the school to contact you. It’s vital that your school has an emergency contact number for you and another adult nominated by you.

And to make sure any messages you need to pass on to school staff get to the right person, find out who will be your main contact point at school and the best way of getting hold of them.

Make sure school staff have the right medication and equipment to look after your child as detailed in their IHP

You should make sure that there is always enough insulin, supplies and equipment in school and that all these are in date. This might be as simple as asking your child’s key worker in school to let you know when supplies are running down/approaching their use by date. You’ll also need to take away any medication or equipment no longer needed in school and make sure it’s disposed of correctly.

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Provide specific advice for school staff regarding school trips, exams, etc

Both school trips and exams need planning well in advance and should be covered in your child’s IHP. Talk to school staff about the extra support your child might need in an exam, such as the need to take blood testing equipment and hypo treatments into an exam and extra time for the exam.

Exams

Under equality laws, schools have a duty to make 'reasonable adjustments' to prevent any child with a disability from being placed at a substantial disadvantage compared to non-disabled children. While you might not consider your child to be disabled, children with diabetes are covered by these laws.

“Reasonable adjustments” are just changes to the way things are normally done.

There are two main types of help which might be available for children with diabetes.

1. Access arrangements

Adjustments to exam arrangements are known as 'access arrangements'.

Examples of common access arrangement for children with diabetes include:

  • rest breaks – this is where the timing of the exam is paused and re-started when the child is ready to continue (eg if your child has a hypo/hyper)
  • provision of drinks and snacks (to treat or prevent a hypo/hyper)
  • access to blood glucose monitoring equipment.

It’s really important to let your child’s school know about any access arrangements your child will need as soon as possible. This is to make sure that there’s enough time to arrange the adjustments. So if you’re expecting exams during the school year, talk to the school at the start of the school year, or as soon as your child has been diagnosed.

Don't assume the school will automatically know what adjustments your child needs. Think about how diabetes might affect your child’s performance in an exam, and discuss particular adjustments you think they need with the examinations officer or whichever member of staff is responsible for arranging exams at your school or college.

2. Special considerations

This is where your child’s marks can be upgraded (up to 5 per cent) after an exam. Under special considerations, the exam board might look at:

  • the amount of work your child managed to do in the exam
  • any relevant coursework in the subject
  • any previous exams your child has done in the subject.

The most likely reason for applying for special consideration for a child with diabetes is a low or high blood glucose level that has affected how well they performed in the exam. The problem doesn’t have to be during the exam, it could be something that’s happened earlier that is still affecting them, eg a hypo that has left them less able to concentrate.

Getting special consideration can be challenging, and you must provide evidence, eg blood glucose levels. If you are claiming that a hypo/hyper before the exam affected your child’s performance, you or your child must inform the staff in the exam room that this has happened. Or if it’s because your child had a hypo/hyper or felt unwell in the exam, they must inform staff at the time.

You will also need support from your child’s doctor or nurse.

Your child will also have to have done a certain amount of the total assessment needed in the subject, and you will also need to apply for it within 7 days of your child completing the exam. If you want to apply for special consideration, talk to the examinations officer at your child’s school.

If an exam is set by an examination body rather than by the school (eg for GCSEs, etc), the school will need to tell the examinations body about any adjustments asked for.

Some arrangements are the responsibility of the school, and some are the JQC (the Joint Council for Qualifications - the organisation which represents the largest national awarding bodies offering qualifications in the UK, including GCSEs, A levels, Scottish Highers and vocational qualifications). So again it is important to make sure that you discuss this with your child’s school in good time.

You might need to provide a letter from your doctor or nurse to confirm that your child has diabetes.

Once agreed, ask for a written copy of the arrangements so you can check them.

For more information about the JQC, see their website.

How you can help your child at exam time

The stress of exams can upset your child’s blood glucose levels. Stress often makes blood glucose level rise anyway, but if they are studying all day and not doing much activity, their blood glucose is likely to rise even higher.

On the other hand, if worrying about exams means your child has lost their appetite, then their levels are likely to drop and they could have more hypos.

It can be hard, but it’s really is worthwhile for your child to keep their blood glucose levels as close to normal as possible during exam time, because then they’ll be in the best position to concentrate properly and do the best they can in the exams.

So encourage them to do a few extra blood tests. Then, they can adjust their insulin or the food depending on your results. Talk to your PDSN for more advice about this.

On the day of an exam, the following can help your child perform to their best:

  • Try to eat meals as normal to give the brain plenty of energy to work on.
  • Check blood glucose level, and if it's on the low side, have an extra snack.
  • If they can't test for any reason, and they're not sure if they're hypo or just nervous, have a snack anyway, and sort out any high blood glucose levels later.
  • Get together some food for your child to take in to the exam in case of a hypo. Make sure it's something they can eat quickly and quietly – a sugary drink might be a good idea.
  • Remind the teacher about your child’s diabetes and that they might need to test their blood and eat during the exam if they're hypo.

School trips

Your child shouldn’t be prevented from going on a school trip just because of their diabetes, including overnight stays. But they might need more help than they usually do in the school day. Think about what extra help they might need, and along with your PDSN and the relevant school staff, make a plan for training up school staff in good time for the trip.

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