Although living with life-limiting illness can affect many aspects of your life, support, information and advice are available from a variety of sources to help you cope with some of the physical, emotional and practical issues you may face:
Here are some sources of help:
Children and Young People
It’s hard for anyone living with a life limiting condition but it is particularly difficult for children and young people. Somehow it’s harder for their voices to be heard and they can feel that they have no say in what happens to them. There seems to be more pressure to pursue treatments and avoid discussions about end of life care because it’s so hard for everyone, including doctors and nurses, to accept that this child or young person is going to die.
ACT – the Association for Children’s Palliative Care – has some helpful information for children, young people, their families and health care professionals. Visit www.act.org.uk or telephone their helpline on
For young adults diagnosed over the age of 18 years, living with life limiting illness can be especially stressful both for them and their families. Lots of factors can affect how young adults cope. Concerns around dependency on parents, pursuing higher education and career goals, keeping up with friends, trying to be normal and forming new relationships are just some of the issues. You can probably think of more. Try not to be frightened of talking to your family and friends about your concerns as they can be a huge source of support and comfort.
As your health deteriorates it is important to start thinking about your future care because:
Now look at the section on planning for your future care.