Five years of loving care: NHS Lothian respite care service marks 5th birthday

 

THEY'RE described by parents as a "lifeline" and a "godsend." Now NHS Lothian's respite care service for children with complex disabilities is marking five years of supporting families.

Parties are being held this weekend at both Calareidh, in Edinburgh, and Sunndach in Livingston to mark the landmark birthday for the pioneering service, which are now being used as blueprints for future services for disabled young people.

The purpose-built homes make it possible for children and young people to stay at home by providing a welcoming second home, enabling parents and carers to take regular breaks away from the exhausting demands of caring for young people with complex needs.

Sunndach means "bright, happy, sunny" in Gaelic, while Calareidh, in the Bingham area of Edinburgh, means "peaceful haven."

The service is linked to Edinburgh's Royal Hospital for Sick Children.

Maureen Theurer, nurse in charge for the respite service, said:

"It's been a brilliant five years and we look forward to continuing to develop the service in future. We all feel privileged that we've been able to build really strong relationships with our children, young people and their families so that families feel they can safely leave their children in our care."

Children, young people and their families will be joined by staff and wellwishers at the events over the weekend.

The service currently supports 35 children and their families from central, southern and eastern Scotland. Increasing survival rates for children born either with complex disabilities or extremely prematurely - due to improved medical care - are expected to see an increase in demand for the kind of services provided by Sunndach and Calareidh.

The extent of support provided varies from either providing a limited number of overnight stays to young people staying permanently in the homes.

Each home is a nine-bedded bungalow, with single bedrooms, lounge, conservatory, dining kitchen. therapies rooms with special equipment and special sensory gardens. The corridors are designed to be wider than normal to accommodate a number of wheelchairs, while children and young people who need long-term care can decorate their own rooms. Young people and their families were involved in the design of both homes.

Dougie and Josie Cameron, from Kirkliston, near Edinburgh, are regular visitors to Sunndach, in Livingston, with their 11 year old daughter Louise. Louise has cerebral palsy, caused by her brain being starved of oxygen at birth. Mrs Cameron said:

"It's like having a baby all the time. While there comes a point where the wee one is less dependent, that will never happen with Louise. You also get to the point where you think you're the only one who understands how complex Louise's needs are, so only you can care for her."

She added:

"You never get a chance to do things like go to the cinema, or go out as a family, because you need to take care of Louise's needs. It was a consultant who asked us when we got time away, and suggested Sunndach. We came to see it and it's warm, friendly, the staff are brilliant and there's a nice atmosphere so we felt able to leave Louise, knowing she was being looked after well."

Mr and Mrs Cameron use the space created by respite care to make time for themselves and their other family members.

David Rice's daughter, Jennifer, lives at Sunndach. Mr Rice, from near Kirknewton, West Lothian, was involved as a parent in the planning of both Sunndach and Calareidh.

This place is as near perfect as you are ever going to get," he said. "It was designed by people with a real and personal interest in getting it right. It's a fantastic facility."

Susan Manlove, a two year-old from Linlithgow, caught meningitis as a very young baby, spending extensive periods in a number of hospitals. As the children and young people have complex needs, the service is staffed by high numbers of registered nursing staff, together with trained support workers and administrative and housekeeping staff. Susan's father, David Manlove, said: "Since Susan starting coming to Sunndach she has learned to smile again."

15/08/2008