Once your child has been diagnosed with a life-limiting or life-threatening condition, it is important that their needs, and those of your whole family, are assessed regularly. It is also important that a care plan is drawn up to meet these needs, and that this care plan is updated following each assessment.

During an assessment, the following things should be covered:

  • Medical history and factual information about your child
  • Personal and care needs
  • Practical issues (including home adaptations and equipment)
  • Emotional and psychological needs of the whole family
  • Education/employment

It’s important that professionals from as many services as possible are present at the assessment meeting, to avoid having to go through different assessments for different services.

A care plan documents all the decisions made in the assessment meeting about the type of care and support that will be provided for your child and family, the frequency of this care and support, and what should happen in different circumstances. It should be based on your wishes, and should be updated regularly.

All professionals involved in your child’s care should be familiar with this plan, and ideally have a copy of it to refer to.

At this point in your journey, you will come into contact with a wide variety of services and professionals which you might not have even known existed before. It’s important to understand how each of them is involved with your child’s care. Together for Short Lives publishes a Who's who document to help you with this, but you can always ask a member of your care team.

Together for Short Lives believes that every family should be assigned a Key Worker; a professional who will co-ordinate all the different teams and professionals involved with your child, and help to organise appointments and administration for you. A Key Worker can be any professional involved with your family, but is usually a community nurse or social worker. Some areas across the UK offer Key Workers as a matter of course, but others do not. Even if it’s not something you’re offered, you should mention it and try to get a Key Worker assigned to you, as it can make life a lot easier.

It’s important to remember that as parents, you are the experts in your child’s care, and you should be encouraged and supported to feel in control and to work in partnership with the care team at every stage of your journey.

For more information about this stage of your journey, have a look at the Multi-disciplinary assessment of your family's needs and A child and family care plan sections of A Family Companion.