Support and Information for Families of Children with Life Limiting Conditions
|
Together for Short Lives is a UK charity for all children with life-threatening and life-limiting conditions, and all those who support, love and care for them.
Families often say that they fail to get the information they need about the help and support that is available. To address this, Together for Short Lives has developed a range of ways to access support and resources to help get the most from local services and to enjoy time together as a family.
One of their resources, [The Family Companion], is split into six sections and looks at implications for families: what it means for them, what to expect, who can help and useful checklists – for each of the following events:-
- The prognosis – sharing significant news
- Transfer and liaison between hospital and community services
- Multi-disciplinary assessment of a family’s needs
- A child and family care plan
- An end of life care plan
- Bereavement support
Families might not want to read the whole document at once, but having the information there to read at times that suit, can make facing these difficult issues a little less stressful.
Together for Short Lives has also developed a range of [Family Factsheets] to be used alongside this Companion, which offer more detailed information about specific topics e.g. Understanding Siblings’ needs, Children’s Hospice services and Transport.
If families have questions on palliative care services or need help navigating the system, they can contact Together for Families Helpline free on 0808 8088 100 or email info@togetherforshortlives.org.uk.
Together for Short Lives also has an [Advocacy Service] which can provide individual support from a legal professional, working alongside families, to help them to make their case where there is a difficult issue they are facing.
If you would like a copy of the Family Companion or Family Factsheets, or have any questions about their work, please email: families@togetherforshortlives.org.uk. Alternatively, all their resources can be accessed from the ‘Help for Families’ section of their [website].
|
|
