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Caring for children with severe and complex needs

If your child has been diagnosed with an illness, disability or sensory impairment that needs a lot of additional support for them to live day to day, they might be described as having "severe or complex needs". A child might be born with severe and complex needs from birth, or this might happen to them following an illness or injury.

The Disabled Children's Partnership have produced a series of videos called the Secret Life of Us, which provides a window into the life of families of children with severe or complex needs.

This is the Secret Life of Us

Although everyone's experience will be different, it can be reassuring to speak to other parents who have children with the same disability or condition as yours. They're likely to have been through the same emotions and processes as you.

Many organisations have online forums or message boards for parents. For example:

Scope

Choice Forum

Wellchild

Mencap - Family Hub

The charity Bliss can provide advice and support to families with a baby in special care. There also may be local groups for parent carers in your area. The hospital treating your child will be able to give you details of local groups.

Several charities run 'Listening Ear Services.' These allow parents to speak to other parents who have been where they are to get some advice and support.

Contact 

Wellchild

Challenging Behaviour Foundation

Council For Disabled Children

GP carers register

If your GP's surgery has a carers register, ask to be included on it. If your GP knows that you're a carer, they can keep an eye on your own health and you'll have someone you can speak to in confidence about how you're feeling. They can also advise on local organisations and carers services that may benefit both you and your child now and in the future.

Although everyone's experience will be different, it can be reassuring to speak to other parents who have children with the same disability or condition as yours. They're likely to have been through the same emotions and processes as you.

Many organisations have online forums or message boards for parents. For example:

Scope

Choice Forum

Wellchild

Mencap - Family Hub

The charity Bliss can provide advice and support to families with a baby in special care. There also may be local groups for parent carers in your area. The hospital treating your child will be able to give you details of local groups.

Several charities run 'Listening Ear Services.' These allow parents to speak to other parents who have been where they are to get some advice and support.

Contact 

Wellchild

Challenging Behaviour Foundation

Council For Disabled Children

GP carers register

If your GP's surgery has a carers register, ask to be included on it. If your GP knows that you're a carer, they can keep an eye on your own health and you'll have someone you can speak to in confidence about how you're feeling. They can also advise on local organisations and carers services that may benefit both you and your child now and in the future.

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.

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 both verbally and in writing. Building a trusted relationship with someone who works closely with your child can be a valuable source of support.

Your child may receive a 'continuing care package' if they have needs arising from disability, accident or illness that can't be met by existing universal or specialist services alone. The package could include a range of services commissioned by local authority children's services and sometimes others. 

Continuing Health Care Explained

 

 

Personal health budget

Children who have a continuing care package have the right to have a personal health budget so that their families and carers can have more control over their care.

Find out more about personal health budgets.

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.

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 both verbally and in writing. Building a trusted relationship with someone who works closely with your child can be a valuable source of support.

Your child may receive a 'continuing care package' if they have needs arising from disability, accident or illness that can't be met by existing universal or specialist services alone. The package could include a range of services commissioned by local authority children's services and sometimes others. 

Continuing Health Care Explained

 

 

Personal health budget

Children who have a continuing care package have the right to have a personal health budget so that their families and carers can have more control over their care.

Find out more about personal health budgets.

Respite care

Time away from your child can often be beneficial for you both. Being overwhelmed and exhausted by your caring responsibilities can lead to ill health.

If family and friends can't always step in, respite care may be an option for you. Your GP or social worker will be able to discuss all the options available to you and organise the care. Alternatively, you could pay for respite care privately.

Find out more about carers' breaks and respite care.

Respite care

Time away from your child can often be beneficial for you both. Being overwhelmed and exhausted by your caring responsibilities can lead to ill health.

If family and friends can't always step in, respite care may be an option for you. Your GP or social worker will be able to discuss all the options available to you and organise the care. Alternatively, you could pay for respite care privately.

Find out more about carers' breaks and respite care.

Further information can be found within the How to care for children with complex needs - Social care and support guide - NHS.

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