Together for Short Lives
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Ongoing care

Ongoing care for families

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 so that the right support is put in place to allow you to enjoy quality time as a family.

Every child and their care needs are unique, but there are some universal approaches to care that can be applied. For example, you should expect to receive a multi-needs assessment from all agencies, and have one keyworker from the medical team to deal with your queries. We’ve developed the following checklist that may be useful – if you feel you are not experiencing any of the considerations on this list you should raise this with your medical team or lead practitioner:

  • A multi-agency needs assessment should take place as soon as possible following diagnosis.
  • The assessment process should involve all agencies and providers so that you do not have to repeat your needs to different services and organisations.
  • You should be central to the assessment process and expect to work in equal partnership with your professional team.
  • Your child should be the central focus of the assessment and be involved in the process.
  • Care should be taken to include the needs of the whole family.
  • Your culture and personal beliefs should be respected.
  • Straightforward, non-jargon language should be used.
  • Issues of confidentiality and consent to share information with identified professionals should be discussed with you.
  • You should be given your own copy of the assessment information to keep.
  • It should be made clear who is taking the keyworker/lead professional role.
  • Professionals involved in the multi-agency needs assessment should have appropriate skills and local knowledge of what is available.

Top Tips

  1. You can request a review of your child’s care plan if they have to go into hospital, if there is a change in your child’s condition or if something happens within the family that affects your ability to cope.
  2. It can be helpful to find someone for your child to talk to outside of the family, such as a trusted member of staff at your local children’s hospice. Your care team will be able to put you in touch with a suitable individual or service.
  3. It is usually a good idea to keep your child’s school informed about the progress of their condition, to enable them to keep up with school work and maintain links with school friends. If you have other children, it can also be helpful to inform their school so that they can provide emotional support as needed
  4. It can help to keep a diary of your child’s symptoms so that you can share this with members of the care team.

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. It is crucial that support is provided for you and the whole family.

Information to support you as you care for your child is available in a range of resources developed by Together for Short Lives. Pages 17-28 of our Family Companion provide detailed information about ongoing care and include links to our Family Factsheets.