- Date published: 26 Feb 2015
When I first joined Rainbow Trust back in 1988 the need for specialist children’s palliative care services was just being recognised and the UK was leading the way. It was a really important time to be at the forefront of shaping children’s palliative care, and in particular for me in creating support for all the family, when and where it was needed offering choice and flexible services which were not available.
This type of care is very important. Families are coping with caring for a life threatened or terminally ill child, one of the most traumatic times of their lives, and the impact is on the whole family creating enormous strains on parents, siblings and wider family members. They need support suitable for their family, when and where it is best for them. This is particularly important for dealing with crises and for end of life care. As identified in the Department of Health review of children’s palliative care in 2007 this support was, and is, simply not widely then available and Rainbow Trust fills this gap.
Sometimes families need help getting to and from hospital appointments. Rowan is seven and this makes a huge difference to her family’s life.
Sometimes it could be someone to sit with a sick child to give parents a break so they can spend time with worried siblings. When we recently filmed Flora Ellis, mother of two year old twins, Peter and Thomas, she spoke about how hard it is to cope during Peter’s treatment for leukaemia. This is echoed by many of the families we support.
Sometimes this could just be someone to talk to who isn’t part of medical care, who doesn’t judge and will take the time to listen.
Most people agree that this support should be in place but all too often this isn’t the case and there is sadly only too little support like this available for families.