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Caring for terminally ill children

Terminally ill children can be cared for in hospital, at home or in a children’s hospice. Care for terminally ill people and their families includes ‘palliative care’.

What is palliative care

End of life care includes 'palliative care'. If you have an illness that can't be cured, palliative care makes you as comfortable as possible to help you live with its effects.

The aims of palliative care are to:

  • control pain and other distressing symptoms
  • help patients and families cope with the psychological effects and emotional upset caused by the illness
  • help patients and families deal with any social or practical problems of the situation
  • help people to deal with spiritual questions which may arise from their illness
  • support families and friends in their bereavement

Palliative care isn't just for the end of life. You may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.

In hospital

Ask to speak to the palliative care team in the hospital your child is in. 

Palliative care teams in hospitals usually include:

  • specialist nurses - also called Macmillan nurses
  • consultants 
  • specialist registrars

The Teenage Cancer Trust has special units to care for young people at:

At home

Ask your GP (doctor) to put you in touch with the palliative care nurse (sometimes called Macmillan nurses or LOROS community nurses).

Children’s hospice

Rainbows Hospice takes children and young people from across the east Midlands. 

You can refer your child – you don’t need a doctor to do it. 

Other places to get information and help

Search the Together for Short Lives directory for information and help including:

  • bereavement counselling 
  • community nursing
  • wish fulfilment
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