Getting help

If your child has a physical illness, their diagnosis and illness should be explained to you by the medical professionals dealing with their care. It is important to ask questions if you do not understand anything about your child’s condition or their care, to make sure you can give them the best help.

Children with physical illnesses and their families can have lots of extra stresses and strains in addition to the day to day challenges everyone faces.

Many children and young people who are physically ill are incredibly strong and positive, achieve fantastic things, and just get on with it despite the challenges they face.

But there may be times when they feel depressed, anxious or angry. They may be in pain or discomfort which over the long term has a psychological effect. They can feel very anxious about death and dying.

It can be upsetting and isolating if they can’t do things their friends and peers can, and they can develop low self-esteem. They may have problems making or keeping friends and can be more likely to suffer from bullying. Frustration can be a problem if they have difficulties communicating or doing things independently. There may be lots of meetings with professionals, operations and medication to cope with. They might also feel guilty or upset about the effect their illness is having on family and carers.

For parents and carers, looking after children who are physically ill is often a full time job. While this can be rewarding, it can also be exhausting, and local services may be very stretched and not always able to offer much help. Parents and carers may have constant worries about their child’s health, wellbeing and their future care. If the child is terminally ill, there will be very difficult feelings around coming to terms with this. Managing appointments, help, activities and schooling for their child can be stressful. Brothers and sisters may feel left out, jealous, or worried and anxious. All these factors can affect family life and make things hard at times.

It’s really important to be open with your child about their illness if you can, and share information so they don’t feel everything is out of their control. Prepare them and explain about appointments and medication, and if possible include them in decision making. Accept that they may feel life is unfair, and try to help them take part in normal life as much as possible. For parents and carers, meeting other families in a similar situation can really help.

If you think your child is beginning to have emotional or mental health problems as a result of their physical illness, talk to the team who are providing their care. Explain your concerns about your child and ask how you can best support your child emotionally. There may be someone in that team who can help, or they may be able to make a referral to Child and Adolescent Mental Health Services (CAMHS). Alternatively, you may need to visit your GP and ask for this referral yourself.

Your child may be offered talking therapy to help with their problems. You and other family members may be offered support to help understand and manage their behaviour.

If your child is over 18 they may need to ask for the help themselves, depending on their ability to do this, or you can support them in asking for it.

Youth counselling services may also be able to help, depending if your child is well enough to attend. Young people can refer themselves to these. Most will see young people between the ages of 13-25. 

If your child is at school or nursery it is very important to maintain communication with their teacher. The teacher should follow a step-by-step process to provide extra support if this is needed.  They may suggest that your child should have a statutory assessment to make sure they get the help they need at school.