Respite care.

Respite Care, or 'Sharing The Caring'

It is quite natural for parents, when faced with serious illness in their child, to want to nurse them and care for them exclusively. Their own needs and even those of other children in the family will be considered a lower priority than those of the ill child whose remaining life-span may be short. Such constant care and dedication can mean months, and, in many cases years of missed meals, loss of sleep, a lack of leisure time and the company of friends. Holidays may be incompatible with large items of equipment or treatment regime.

The term “respite care” can be misunderstood and parents may feel guilty if they leave a disabled child in the care of others while they have a few hours away from home or a longer period to enable them to have a holiday. 

For parents of an ill child with a shortened life expectancy every moment is precious and it becomes and it becomes doubly hard to let go and entrust care to others. But without such breaks from the relentless responsibility of caring for a seriously ill child, parents can experience extreme stress and fatigue which can affect their health, their relationships, their ability to cope, and family life in general. Regular, planned respite care should be available to all such families and should not be thought of as a facility only for those reaching breaking point.

To receive respite care from JHT we must receive an application form (Download Here). These can also be found in most general practices through the county, social services offices and in the children’s ward at both Gloucester Royal and Cheltenham General hospitals or phone us and we will send you one in the post. The application form will also have to be supported by professional medical opinion as to the disability of the child.

Having received the form our Nursing Co-ordinator contacts the family to arrange for a family visit, in order to assess the needs and the level of nursing care required. Once this has been done, reports are then presented to our Applications Sub-Committee which meets every six weeks, although emergency cases can be dealt with immediately. Each case is treated strictly on its own merits, and if the level of disability falls within our Charitable remit, sessions of respite care are allocated according to need.

Parents are then informed by letter of the exact package of care, and a suitably qualified nurse is carefully selected from our James Hopkins Trust Bank, currently standing at around 35 all over the county. Wherever possible the nurse will be geographically close to each child's home. After a preliminary "get-to-know" visit, the nurse thus assigned remains with the same child and family on a regular basis, normally weekly, by day or by night. Therefore, over a period of time sometimes lasting for years, a special bond of trust and stability evolves with each child, whilst the parents can better cope with their own caring, safe in the knowledge that the respite programme is tailored to their own needs, in its frequency and flexibility, carried out by a qualified professional. If there is a crisis, care can be increased, if the situation improves, care can be adjusted accordingly.

To this end, all cases are kept under review by the Nursing Co-ordinator either by further family visits, or simply by a friendly telephone call to parents or nurses. All of our services are free to all in the county, and our nurses, in turn, are paid a professional hourly rate. Most of our respite care takes place in the family home, but increasingly, use is being made of our facilities at Kite's Corner, which the nurse and child may use as an alternative, taking advantage of our day room, therapy room or multi sensory rooms. Families can also use Kite's Corner as a drop-in centre or use the facilities during one of our organised playgroups.