James was allowed to pass away at home in his Mother’s arms whilst his Father was at their side. The Respite Nurse was close at hand, giving them the support they desperately needed.
What the Nurses do:
Put simply, the Respite Nurses are specialists in looking after acutely or chronically ill children and babies – in their homes. Often, their patients have conditions for which there may be no cure.
The nurses’ duties range from giving tube feeds, oxygen and medicine to performing physiotherapy sessions or simply interacting with the young patients – providing essential stimulation.
They also have another, crucial role – crucial to the patients’ families. Looking after a sick child 24 hours a day is both physically and emotionally draining. The effects on the rest of the family can be extensive. The Respite Nurses not only provide the peace of mind for carers to take a real break, however short; they also offer experience and support through the difficult, and sometimes final, hours.
What the Nurses can’t do:
Well, they can’t perform miracles. NHS budget constraints meant that in 2002 there were only three part-time Respite Nurses to cover the whole of Oxfordshire. The growing demands on their time meant they could offer some of their young patients a maximum of only three hours a week. Some families needing their help didn’t receive any respite care at all.
This had to improve. This is where ‘ROSY’ comes in…