Children are referred to us from Scotland, Northern and Southern Ireland, and from Northern England down to Birmingham and the Midlands. In many cases, therefore, the very sick children and parents need to cope with being uprooted for months, sometimes leaving behind other children and jobs, adding to the tremendous stress already induced by the illness and uncertainty.
We therefore provide a range of both practical and emotional support.
To meet the parents’ initial need, we provide temporary hospital accommodation in eight flats, located within walking distance of the Unit. Usually parents spend all day with their sick children in the BUBBLE, but staff do try to insist that they go to the flat to have a break and to sleep.
Parents are faced with a range of problems, such as the care of siblings left at home, hardship caused by loss of work, benefits issues, additional travel costs, so we try to provide practical solutions.
Watching over a sick child, too often on a knife-edge, takes its toll on parents, so staff are always on hand to offer advice an comfort. Sadly, in some cases we need to support families suffering bereavement.
In the majority of cases though, our babies and children do pull through and to support the parents with the transition from the Bubble Unit to home, we provide two ‘half-way houses’. This accommodation is near to the Unit, and it allows parents to learn how to cope with their child, without the Unit and to gain confidence in after-care, including drug administration and ongoing medical contact. The Liaison Team is on hand to visit and for telephone advice until the parents feel confident to return home with the recovering child.
Following discharge, the Liaison Team makes contact with medical organisations near to the parents’ home to inform them of the child’s condition and need for ongoing care and drug administration.
Additionally, the Liaison Team and Social Worker maintains contact with families for as long as the parents need them.
A Parent Support Group has also been set up so parents can speak to each other and gain advice and comfort from those who have had to endure a similar traumatic experience.
