If your child has an illness, disability or sensory impairment that needs a lot of additional support to live day to day, they might be described as having “complex needs”. A child might have complex needs from birth, or following an illness or injury.
Some children with complex needs may need to spend time in hospital getting specialist medical care. But where possible, it’s widely believed to be best for children to be at home with their families. If you’re caring for your child at home, support is available for you, your child and the rest of your family.
Medical needs
Your child’s medical and healthcare needs are the responsibility of your local NHS health services. This includes any medical equipment, such as special beds, bed equipment, hoists, and aids to help with incontinence, mobility or hearing. Equipment is usually provided as a free loan, and can be organised by a health professional working with your child. You can find out more on our page on NHS Continuing Care.
If your child needs regular healthcare treatment at home, your family may be supported by community children’s nurses. These nurses can also help you with any treatment that you need to carry out for your child, such as giving oxygen or administering injections.
The health professionals involved in your child’s care should be available to talk to you. If you have questions or concerns, it can be helpful to write these down before you meet. You could also ask them to give you any information in writing and verbally. Building a trusted relationship with someone who works closely with your child can be a valuable source of support.
Daily living
Your local authority is responsible for providing any non-medical care services that your child is assessed as needing. This could include equipment for daily living, care for your child at home, access to play schemes, and respite care so that you can get a break. Find the contact details for your local authority using our directory (see above, right).
To access services from your local authority you'll need to ask for an assessment under the Children Act. Your needs and the rest of your family’s can be taken into account during your child’s assessment. If the assessment doesn’t address your needs as a carer, you can ask for your own carer’s assessment.
Having a child with complex needs is likely to have an impact on your family finances. If your child has a disability, you may be able to apply for a Disabled Facilities Grant from your local authority. This can help to pay for some adaptations to make your home more suitable for your child’s needs. See the Housing page for more details. The Family Fund is a charity that gives grants to low-income families who have a severely disabled child. You can find the eligibility criteria on the Family fund page.
It’s a good idea to make sure you and your family are claiming any benefits that you’re entitled to, particularly if your caring responsibilities limit your ability to do paid work. If your child has complex health needs, you may be able to claim Disability Living Allowance for them. This is a benefit that helps with the extra costs that come with being disabled.
If you’re caring for your child, there are several benefits that you may be eligible for. You can find more information about benefits for carers and the people they care for on our Money and legal pages.
Your child’s education
Every child in the UK has the right to an education. Children with complex health needs are no different. If your child has a disability or learning difficulties that make it harder for them to learn or to access education compared to other children the same age, they may be described as having special educational needs (SEN). Support is available to help children with SEN to get as much as they can from the education system. For more details, see Special educational needs.
Many children with SEN attend mainstream schools, but depending on the needs of your child, it may be beneficial for them to go to a school that has more specialist facilities. This could be a day school or a residential school.
If your child normally goes to school, but is now unable attend for medical reasons, then your local authority must make arrangements for your child to have as normal an education as their medical condition allows.
You would normally tell someone at school if your child was absent because of illness, but it’s particularly important to let the school know if your child will miss more than three weeks of school or if they're likely to be affected again in the future. If this is the case, the school will tell your local authority so that it can give your child educational support while they're unable to attend school.
Teaching can take place at home or in hospital. Your child’s school should give your local authority information about your child’s educational needs. It should also support your child to keep in touch with other students and what’s happening at the school, so that your child is prepared for a return to school life.
Support for you
Having a child with complex needs is likely to have a big impact on your and your family's life. Talking to someone in a similar situation can be a source of support. You can search our directory to find local groups for parents of ill or disabled children in your area. Alternatively, national organisations supporting parent carers often have web forums where you can chat with other parents. You can find more details about sources of support in Parent support groups.
Your family relationships may come under pressure as a result of your caring role. They can also be a great source of strength. Every family is different, but there are some feelings that many carers share. You can find more about family and relationships in Relationships.
