Helen House was the world's first children's hospice, opening in November 1982. It sprang from the friendship between founder Sister Frances Dominica and the parents of a seriously ill little girl called Helen who lived at home with her family but required 24 hour care.
It is natural that the parents of a much-loved but very ill child would want to care for them at home, but caring for your child every day and night, as well as looking after the rest of your family, and earning a living, can be exhausting.
Helen’s family’s experience highlighted the need for respite care and support for children with life-shortening conditions and so Helen House was set up to help families cope by providing occasional respite care modelled on that provided in the family home - personalised and tailored to individual needs.
The building was based on the family home with just eight children's bedrooms, as the small scale provides flexibility, as well as affording the children and families who stay there sensitivity and dignity. The emphasis is on making the most of life, whatever the circumstances.
A full account of the origins and development of Helen House is to be found in 'A House Called Helen: the development of hospice care for children', written by Jacqueline Worswick (Helen's mother) and published by Oxford University Press. It is available through Amazon.
With improvements in medical care, children and young adults with life-shortening conditions are in some instances living longer than ever before.
A children's hospice environment is unlikely to be suitable for someone who's 16 or over, but neither is an adult hospice, which is why Douglas House was opened in February 2004 specifically for young adults.
Douglas House provides a young person with the time to do the things they like to do with the support of the nursing and care team.