Together for Short Lives is committed to collecting information from its members in order to support the development of services across the sector to meet the needs of children and young people with life-limiting conditions. Since 2009, Durham University Mapping Team has collaborated with Children's Hospices UK (Formerly ACT and Children's Hospices UK) in developing more efficient ways of collecting data.
Aims To increase national information about young people with life limiting conditions
▶ Identify the types and gaps in service provision
▶ Identify the number of young people with life limiting conditions and the number of deaths in children's hospices
▶ Provide interactive geographical data maps to visually represent the services.
Methods Durham University Mapping Team developed an online data collection system for reporting children's services in 2002 and a feasibility data collection was carried out in 2009/10 for children's hospices. The evaluation informed the 2010/11 data collection. The 2010/11 data collection involved each hospice registering with Durham University. Each hospice completed a questionnaire. Online reports were completed, summarising key data.
Results In 2010-2011, information was submitted by all 35 children's hospice providers in the UK (Total=46 services). These included:
▶ 45 services supported 7,101 young people with life-limited conditions;
▶ 28 services provided information using ACT diagnostic categories: (N= 4,458 children and young people).
40% were reported in category 4;
33% in category 3;
14% in category 1;
12% in category 2.
▶ 40 services (N=6,203) provided a breakdown of children and young people supported by age and gender. 35% of the young people were age 5-11 years. Males represented 57%
▶ 40% of 729 deaths happened in hospital (N= 45 services).
Conclusion There is a recognised need for consistent data across the children's palliative care sector. Together for Short Lives (Formerly ACT and Children's Hospices UK) with Durham University will continue to collect data in 2011/12 using ICD 10 codes to:
▶ Identify gaps in services across the children's palliative care sector
▶ Inform the Independent Funding Review Pilot work and service planning nationally.
See figure 1 Geo map: Hospice services provided on a 24/7 basis
Other interactive maps available include:
▶ Children, families and siblings supported;
▶ Hospice services provided in hospice settings;
▶ Hospice services provided in hospital settings;
▶ Hospice services provided in home settings;
▶ Bereavement support for parents;
▶ Bereavement support for siblings;
▶ Bereavement support for the extended family.
The map below shows the services that reported they provided at least one type of service on a 24/7 basis.