Developed by Children’s Hospices UK and funded by the Department of Health, guides have been produced covering seven areas that aim to improve the quality of support children and families receive in hospices.
One report promotes the need to understand and practise advocacy to support children, young people and families to lead "ordinary lives". The challenges surrounding translations and interpretation are tackled in another, which focuses on improving access to hospices for minority groups.
The organisation has also reproduced research conducted by Durham University to help professionals get a clearer national picture of the numbers of children accessing hospice services.
Children’s Hospices UK’s director of care and development Maddie Blackburn said: "You really want a highly skilled workforce that can support such children. Having the most up to date information is extremely valuable so you know that families and children will feel comfortable with the support and care that they are receiving.
"Wherever you are, whether its in the NHS or the charity sector, children and families need a voice, one that understands their condition and their specific problems. Many of the young children our charity supports are extremely disabled and have the most complex conditions so they need a real advocate who can support them with equipment, housing and other challenges."
Toolkits providing recommendations for the care of children at the time of death and after death, and guidance on managing medicines as well as supporting children with long-term ventilation needs have also been produced.
A report covering the requirements of regulatory body the Care Quality Commission has been developed in partnership with Help the Hospices, offering answers to frequently asked questions relating to registration and compliance.
Children’s Hospices UK received money to develop the guidance materials from the £30m pot that was first announced in April 2010 by then Health Secretary Andy Burnham. After the general election Health Secretary Andrew Lansley confirmed the funding to support children with life-limiting conditions.
