The 27m found by the Government for children's hospices in England should provide much needed relief for palliative care services.

The loss of lottery cash was hitting hospices hard and the extra 9m a year for three years will at least give the sector some breathingspace (Children Now, 8-14 November).

But while services that care for dying children are benefiting from thismoney, the Rainbow Trust Children's Charity - which supports thefamilies of terminally ill children - is facing hard timesfinancially.

Back in the summer, the charity was forced to close its family supportservice in Bishop Auckland and financial pressures still remain.

Anne Harris, the charity's director of care services, says the loss ofsuch a service is difficult. "It's hard for the families as well as thestaff. We're entirely dependent on voluntary donations so the pressureis to get sustainable funding," she says.

Currently, the charity boasts seven regional family support teams thatcover most of England. These teams provide dedicated support to familieswith terminally ill children.

"We say the support workers offer practical and emotional support, butit's a catch-all description that means everything and anything," saysHarris.

"They might come and help with housework or shopping. Families mightneed that because they haven't got the emotional energy to think aboutdoing it anymore. Workers might also sit with children so parents canhave a break, even if it's just to go and have a bath."

Sometimes workers are asked to get more closely involved, attendinghospital appointments with parents. "They sometimes do it right up tothe death of the child, as some families want them to be there when thechild dies or to help with the funeral arrangements," says Harris.

The family support worker's job is clearly emotionally demanding. "It'sa very demanding job and we're lucky to have a very well-trained andprofessional workforce," confirms Harris. "They get regular one-to-onesessions with their managers and regular sessions with acounsellor."

The workers come from a wide range of backgrounds from social workersand teachers to police officers and nursery nurses, but all need atleast two years' experience of working with children and families.

As well as the family support services, the charity also runs tworespite houses - one in Northumberland and another in Surrey. These aimto provide families with a stress-free holiday - either for a week or aweekend.

"The houses are fully staffed and families do what they like; it's achance for them to be together without pressures and have fun," explainsHarris.

Helping families enjoy the final days with their ill children is aslarge a part of the charity's work as helping them cope with day-to-daylife, she adds. "Helping families have fun is very important. A big partof what the Rainbow Trust does is support normality and help familieshave normal experiences together. One parent I met recently at one ofthe respite houses said how just being together was important for them,even doing things like cooking together away from all thepressures."

As well as parents, the trust also works closely with the brothers andsisters of sick children. "Siblings can feel confused and sometimes theydon't understand what is happening, but feel left out," says Harris.

This kind of support, while not available everywhere, is still a bigimprovement on the past, she admits. "When I was a staff nurse in the1980s, families with sick children were just discharged to unsupportedenvironments," she says. "It wasn't recognised that this kind of supportwas needed at home. The situation has hugely improved since then and weare more aware of the ongoing support needs."

BACKGROUND - A career working with sick children

- Anne Harris joined the Rainbow Trust at the end of July this year

- Prior to joining the charity she was regional services manager for theSouth West and Wales at the child cancer charity Clic Sargent

- She joined Clic in 2003, prior to its merger with Sargent in 2005.Before working at Clic, Harris worked for Sargent

- The Rainbow Trust Children's Charity, which formed in 1986, providessupport for families with children who have terminal or life-threateningillnesses

- The charity has seven family support teams in England

- At the moment the charity is working with 850 families.