Rainbows helps families from six counties

"Many parents are put off by the word hospice, but that shouldn't deter them," she said.

Rural areas of the country, such as Derbyshire, do not have as much access to community health teams who spread the word about the hospice.

The hospice has eight beds, which are usually full at weekends and during summer holidays, but not always at other times of the year.

Ian Fawcett, 14, has been going to Rainbows for five years with his 13-year-old sister Frances from Chesterfield in Derbyshire.

Constant care

They both need constant care.

Their parents, Andrew and Pat, said the 14 nights a year the two children spend at the purpose-built hospice are a lifeline.

It is full of activities and it is a happy place and our children seem very content here

Pat Fawcett

"I have two older children and mainly the Rainbows hospice allows us to get away on holidays and give the elder two a bit more attention," Mr Fawcett said.

The children's hospice, located in Charnwood Forest near Loughborough, offers respite care to 130 families across the region every year.

"It is full of activities and it is a happy place and our children seem very content here," Pat said.

The hospice was opened in 1994 by the Prince of Wales and is funded mostly by charitable donations.

About 7% of its funding comes from health authorities, but the rest is from community fund raising, trusts, corporations and the Rainbows' own shops.

The hospice takes children from Derbyshire, Leicestershire, Lincolnshire, Northamptonshire, Nottinghamshire and South Yorkshire.