Information for the public

What advice and support should we expect?


When you find out your child has cerebral palsy, you should be told what this means, and what kind of treatment and support they might need. It is important to focus on what your child can do, not on what they can't. Your child's care team should help them build on their strengths and to become as active and independent as possible.

You and your child should be given information whenever you need it. It should be easy for you to use and understand. You might prefer to have a discussion, be given some leaflets, or use websites and apps. The care team should also explain things to your child through any special communication systems they use (see speech and language). If English is not your family's first language an interpreter should be provided if you need one.

What else should we be told about?

  • Financial support that you may be entitled to.

  • Social support to help ensure that your child is as active and independent as they can be within your family, as well as help with their care.

  • How to get equipment for your child, like wheelchairs or walking support, and help with transport.

  • How to get regular assessments of your own care and support needs.

  • What respite care is available, to help you have a break from your caring responsibilities.

  • Local support groups, both for your child and for you and your family, which can provide emotional and other support.

  • Voluntary organisations that can also give information and support.

  • Other services for children and young people with cerebral palsy, such as sports clubs, social groups and specialist schools.

Sex and sexuality

Older children and young people should be given their own information about sex education and related topics from an expert. This should cover things like having periods (for girls), sex, sexuality, contraception and starting a family.

Sharing information

Your care team should work with you and your child to put together information that is unique to your child – a 'personal file'. This might be in an electronic format or notes on paper, whichever you prefer. It can be shared with everyone who supports your family, including friends, family members, health professionals, social workers and teachers. It could include your child's medical history, information about their abilities, conditions, medicines and other treatments, care plans, any special communication needs, equipment needs, and who to contact in an emergency.

Making decisions together

You and your child should be at the centre of all decisions, so that you can agree the care and support that is best for them. Every child and family are different, and the care team should talk to you about their and your needs. They should involve you by:

  • checking regularly and talking to you about whether and how your child's care needs are changing as they grow up, and explaining about the options that are available at every stage

  • talking to you so that they understand what matters to you – for example, they should respect any social, cultural, spiritual or religious support that is important to your family

  • explaining if they think something that is mentioned here won't work for your child and why, and discussing other options you could try instead

  • giving you details of someone in the care team that you can contact if you have any questions.

There is more information about involving people in their care in the your care section of our website.

Questions you or your child may want to ask

  • Who will see the information about my child's care?

  • Can we keep a copy of my child's personal file?

  • What help is available from social services?

  • What kind of respite care is available?

  • Are there any local support groups for my child and for us and our family?

  • What other support are we entitled to as a family?

  • Can we get support with my child's education?

  • Who can we contact if we have any concerns?

  • Is there someone my child can talk to about sex and sexuality if they want to?

  • Information Standard