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
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 Young Lives vs Cancer 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
This section explains some of the more common symptoms, their causes and treatments. It also gives you some ideas on what you can do as a parent.
Not every child will have every symptom, most will only have a few. If your child develops one of these symptoms, this section should be able to answer some of your questions, until you have a chance to discuss it with your doctor or nurse. 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.
Pain
The purpose of this section is to give you the knowledge you need to help your child: how you can recognise pain, some information about different types of pain and what you and your nurses and doctors can do to try to relieve pain.
Nausea and vomiting
Vomiting means actually being sick Nausea means feeling sick. Feeling sick is a very unpleasant feeling, but it does not always end with being sick.
Breathlessness and breathing problems
Breathlessness is a common experience, e.g. after running most people feel the need to breathe more quickly and more deeply than normal.
Fatigue
It is quite common for children to feel very tired or exhausted at his stage in their illness. They may spend more time sleeping or curled up on the sofa and may not feel up to their usual activities.
Agitation and restlessness
Agitation is restless moving, shouting, twitching or jerking of the body.
Fits (seizures)
Your child may have fits at diagnosis, or following initial surgery. They may also occur during the palliative phase.
Constipation
Constipation is a common symptom in children receiving palliative care.
Itching
There could be a number of different causes for your child's itching.
Urinary problems
You may notice your child is having difficulty passing urine or stops altogether. Or they may experience issues with bladder control.
Bleeding
As tumours or leukaemia advance, they can occasionally cause bleeding in different parts of the body
Specific issues with brain tumours
This section deals with the symptoms that children with brain tumours or brain metastases may experience during this phase of care and how they can be managed.
General care
This section provides you with some advice about general care during the palliative phase of your child's treatment.
Nutrition
During the palliative phase of your child’s illness, eating and drinking may cause you some anxiety. This section will give suggestions and ideas to help you manage your child’s nutrition.
Alternative and complementary therapies
Many families ask about alternative and complementary therapies during this phase of care.
Relaxation techniques
Helping your child to learn to relax can help reduce anxiety. This can have a beneficial effect on pain and breathlessness. It is also an activity that can be done with other members of the family to relieve stress.
The information on this page 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.