Support Families Who Have a Terminally Ill Child

A day in the life of Rainbow Trust’s Family Support Workers…

5am Ruth from our Kendal Team leaves home to collect mum and child to drive them to the Royal Victoria Infirmary in Newcastle for the child’s weekly chemotherapy treatment.  Mum doesn’t drive and without Ruth in her Rainbow Trust Kangoo it would mean an overnight stay in hospital following the nightmare of public transport.

7am Louise from our Southampton Team prepares to provide one-on-one support to siblings, who are coming to terms with the terminal illness of their brother, by taking them on a day trip, offering them vital time to talk to a trusted adult who understands some of what they are going through.  Louise has provided regular support to the family, since their son was diagnosed 18 months ago, and is a familiar face that the children look forward to seeing. 

9am Catherine from our County Durham Team supports a tearful mum as she buys her child’s first school uniform even though she does not know whether her child will live long enough to wear it.  The mum had been planning this shopping trip before her child became ill and thought that it would seem as though she had ‘given up’ on her child if she didn’t prepare for that all-important first day at school. Having the reassurance and support from Rainbow Trust helped her to understand that these feelings are ‘normal’ and that other families have faced the same dilemmas she has.

11am James from our Manchester Team accompanies a family to a consultation about the remaining options for the treatment of their child’s cancer.  Hospitals can be very frightening places and parents find that it helps to have their family support worker with them during appointments.  Not only because we have heard it before, but we are also able to understand the medical language and can spend valuable time after the appointment ensuring that the family are able to fully consider the options open to them.

1pm Clare from our Swindon Team provides emotional and practical support for a family at the funeral of their child.  As well as being with the family on the day of the funeral, Clare will remain in contact with the family offering on-going bereavement support for as long as the family need it.  This support can vary from family to family and may range from having a cup of tea with a mother who wants to remember the silly things that her child did and be able to laugh and cry at the same time with someone who knew her child, to individual work with brothers and sisters helping them put together a memory box to remember their brother or sister and the time that they spent together.

3pm Diane from our Surrey Team visits a sick child in Great Ormond Street Hospital, the child’s mum has to go home to her three other children, desperately trying to keep the family together through their ordeal.  Diane is a welcome face bringing valuable distraction for the child during their six weeks of unpleasant treatments.  Spending time with a child in hospital  gives mum a much needed break and time to focus on her other children as well as being a ‘new’ visitor for the sick child – someone who is there ‘just for fun!’

5pm Time for tea! Matthew from our Essex Team supervises tea with the siblings of a sick child, keeping them entertained whilst mum and dad spend precious time together with the sick child who is bed bound.  Sometimes it is the little practical tasks that make all the difference to a family coping with the unthinkable – someone to make the tea and clear up afterwards just gives families that vital breathing space.

7pm Caroline from our Surrey Team visits a new family to assess what support Rainbow Trust can offer them.  They have been referred by Great Ormond Street Hospital as their child has a very rare genetic condition that has been difficult to identify and treat.  Mum, a single parent, has had to give up work and with four other children is simply not coping.  Caroline will appoint a Family Support Worker to this family who will work with them – sick child, siblings and Mum – to enable them to deal better with their circumstances.