Palliative care is the phase of treatment where cure is no longer possible, and is concerned with managing symptoms and quality of life.
This section has been written to give you information about commonly occurring symptoms, their causes, available treatments and, most importantly, suggestions for simple things that you can do at home to help your child. It also includes information on services which are available to your family and an explanation of how care and services will be organised around you.
The aims of palliative care services are:
- To arrange services to meet the specific needs of your child and your whole family
- To manage symptoms promptly
- To provide care where you want it (as far as possible)
- To provide your whole family with as much support as you need
Multidisciplinary team meeting (MDT)
To best plan your child’s care, a multidisciplinary team meeting may be arranged. This will bring together people from different disciplines and different organisations – some will already be well known to you, but others may be new faces. This meeting may include:
- Your GP
- Local community nurses
- Your outreach nurse specialist
- Your CLIC Sargent social worker
- Your hospital consultant
- A representative from the local children’s hospice
- Other significant people, e.g. teachers, clergy
- You can also ask for anyone you particularly wish to be involved.
At the meeting, it will be agreed who is to take the ‘lead professional’ role – this is the person who has particular responsibility for coordinating your child’s care and making sure that communication between you and all the professionals goes smoothly. This will usually be someone who is already well known to you, e.g. local outreach nurse. One of the lead professional’s jobs is to keep in regular contact with you, so that if new symptoms develop, they can rapidly call on other members of the team to treat them promptly. You will continue to have direct access to other professionals, for example GP, hospital team, and hospice.
One of the nurses who is known to you can feed back to you after the meeting.
Coping with common symptoms
The information in this section is taken from our booklet 'Managing symptoms at home.' Copies are available from your child's hospital, or you can download or order a free copy directly from our website.
Managing symptoms at home booklet