Every parent longs for their child to be healthy; however, many children are born with – or develop early on – long-term conditions which require ongoing treatment and medication throughout their childhood.
‘Chronic conditions’ is an umbrella term and many children with a long-term condition will be well for much of the time. Some long-term conditions are treatable with regular medication alone, while others may require ongoing and intensive medical care.
Many children with a chronic condition are able to lead normal lives, going to mainstream schools and enjoying the same leisure activities as their peers.
Children are extremely adaptable and most will learn to overcome life’s challenges and live with their condition. In fact, it can often be more difficult for parents who find it difficult to watch their child suffering or undergo numerous operations.
Examples of chronic childhood conditions include:
Children and young people who are well enough to attend mainstream school are usually encouraged to do so.
When a child is often unable to attend school because of a long-term or recurring medical condition the local council should produce an individual education plan for the child to take effect as soon as they are unable to attend school.
Children and young people should not be at home without access to education for more than 15 working days and should receive an education of similar quality to that which is available in school, including a broad and balanced curriculum and a minimum of 5 hours teaching per week.
When a child’s medical needs or physical disabilities prevent them attending a mainstream school – even with assistance – they will be educated outside school, perhaps at home or in hospital. Children who miss school may fall behind other pupils of the same age; while this does not necessarily imply that they have additional learning needs, it is possible that their health issues will increase the likelihood of them developing ‘a significantly greater learning difficulty than the majority of children of the same age’. If this is the case, they may require a statutory assessment of their needs.
For more information read Access to education for children with medical needs.
Children and young people with long-term conditions will feel different to other children, especially if their illness prevents them taking part in the activities they see their siblings and friends enjoying.
Children develop different coping strategies, with younger children often having less understanding of their illness and its limitations.
Older children are more capable of understanding their condition and may feel left out when they miss school or leisure activities. When a young person’s appearance is affected by their illness, it can have an impact on their self-confidence and can lead to them being uncooperative in terms of taking medication or following special diets. Some young people may become frustrated or depressed y their situation.
It helps if young people feel they are not missing out. Encourage them to enjoy activities they are able to participate in. Many UK charities provide social opportunities for children and young people to interact and socialise with others with the same condition. Others have online communities.
Parents and siblings as carers
If you are providing care and support to a child under 18 who is ill, has a disability or additional medical needs, you are a parent carer.
Hard as it may be, if you can accept your role as your child’s ‘carer’ alongside your natural role as a mum or dad, you will gain additional legal rights and entitlements which will help you get the support you need.