Information for the public
About your care team
Families should be supported by a team of professionals working closely together. Everyone who is involved in your child's care is part of the team. It will include hospital doctors, nurses, pharmacists and your GP but also other kinds of professionals, such as:
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social workers
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teachers
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family support workers who can help with the practicalities of end of life care (such as transport to hospital)
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counsellors who can provide emotional support
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chaplains (people you can talk to about beliefs that are important you).
You should have someone in your care team who is your main contact and who coordinates your child's care. You can go to them first if you have any questions or worries. Staff changes in the team should be kept to a minimum so that you and your child see the same people regularly. You should be told if anyone new will be joining your team.
Exactly who is in your care team will change over time as your child's needs change. The person who coordinates your child's care may change too. When your child is first diagnosed, the team may focus on helping them live their life without their condition getting in the way. Later on, palliative care specialists may join the care team. They will be able to provide care and treatment to manage your child's symptoms and keep them comfortable.
The care team will regularly discuss your child's needs, and they should invite you to any meetings about care planning.