The Type 1 essentials for children and young people outline the 10 things any parent should expect from their child’s diabetes care. It includes the care, checks and help that the child or family need to make sure their condition is managed well – in hospital, school and wider society.
The Type 1 essentials are:
1. Care from a specialist team
Your children's diabetes team should be able to give you:
- advice about food choices
- advice about eating healthily and keeping active
- support and advice to help with feelings or worries.
Your team should include:
- a consultant with experience in diabetes care for children
- a children’s nurse with experience in diabetes
- a dietitian with experience in children’s diabetes, who can advise you about food choices
- someone who can help you and your child get advice about feelings or worries.
2. Regular checks
All children should get:
- a blood test to measure their diabetes management (known as HbA1c) – four times a year
- regular checks of their weight, height and general health
- screening for other conditions that are linked to diabetes – these include coeliac disease (when diabetes is diagnosed) and thyroid disease (when diabetes is diagnosed and then once a year)
- an opportunity to agree goals
- an opportunity to talk about emotions or things you might be struggling with.
Children aged 12+ should also get:
- blood and urine tests to check kidneys – once a year
- digital photo of retinas (eyes) – once a year
- blood pressure check – once a year
- foot examination and footcare review – once a year.
3. The right treatments
You should be told about all the available treatments, including new ones. And you should be able to get the treatments that are right for your child. These might include:
- multiple daily injections, carbohydrate counting and the most appropriate insulin
- blood glucose and ketone meters, and testing strips
- insulin pumps
- continuous blood glucose monitoring.
4. Support so you can do it yourself
As much as possible, your family should be able to manage your child’s condition yourselves. To help you do this, you should be able to get expert advice, education and information that is easy to understand. This should include:
- consistent, high-quality information that your child can understand, in a format that suits you and your child
- education so your child can learn how to manage their condition
- advice on eating well and keeping active, so you and your child know what needs to be done
- 24-hour access to help and advice
- a key contact for you in your healthcare team
- the chance to regularly see a dietitian, who can advise you about food choices.
Your child may also be able to getDisability Living Allowance.
5. Help with feelings or worries
Coping with diabetes can sometimes be really difficult – both for
the child, and for the rest of the family. It is perfectly normal to feel upset, angry, confused or worried. Make sure you talk to your diabetes team about this.
As part of your diabetes healthcare, your team should offer your child and your family the chance to talk to a psychologist – an expert in mental and emotional health. They should have experience in diabetes and how it affects children and their families. You should be able to talk to them about particular issues if you need to, and have regular meetings just to see how things are going.
6. The right care when you are in hospital
If your child has to go in to hospital for any reason, you should have contact with a children's diabetes team. You and your child should also be allowed to carry on managing their condition yourselves if possible. This will help the hospital staff to look after your child in the right way.
7. A smooth transition to adult diabetes services
Moving from child to adult healthcare services is a big change. It can be a difficult time for teenagers, who are already dealing with other
changes in their lives. But it is important that the move works well, so children keep on getting the care they need. The two diabetes services should work together to make sure the move goes as smoothly as possible for your child, at an age that is right for them, and in a way that suits them.
8. A say in the care you get
You and your child should be involved in making decisions about the care you get, and have a say in how your child’s diabetes is managed. For example, you should:
- be able to work with your doctor or healthcare team to create a plan for how your child's diabetes will be treated and managed, talk through the plan, and ask any questions
- get copies of letters that say what everyone has agreed to
- help design services that are right for you.
You should also be invited to fill in a national Patient Reported Experience Measure survey. This collects information about the kind of care children with diabetes are getting.
9. Support at school
Your child should have all the support they need to do well at school. He or she should be able to take part in all areas of school life, including classroom work, trips, sports and after-school clubs. Your diabetes team should work with your school to make sure that happens. For example, they should:
- agree a healthcare plan with you and your child
work out who will make sure your child gets the diabetes care they need at school
- keep plans up to date and make sure everyone knows what is happening.
10. Equal opportunities
Your child should be given the same opportunities as everyone else, and not be treated differently simply because they have diabetes. They should be able to join in with sports, activities, clubs and groups. And they should be able to learn to drive and do most jobs.
If you’re not receiving any one or more of the ten essentials, you should take the guide to your diabetes team and discuss it with them.Find out more about what to do next.
If you have any questions or worries about the Type 1 essentials for children and young people, you can contact ourCareline.