Date published: 10 October 2016 by Anna Jackson

Rainbow Trust Children’s Charity provides emotional and practical support to families living with a child with a life threatening or terminal illness. We support the whole family in whatever way they need and our 30 years of experience has allowed us to create a service that helps families cope with one of the most difficult times in their lives. Here, Julie Hynes, Senior Communications Executive for Rainbow Trust Children’s Charity shares how families are supported.

Talking does make a difference

A recent pilot survey of some of the families we support revealed that 95% of the families surveyed said that they had a better quality of life ** after just six months of Rainbow Trust’s support. They felt they were better able to cope emotionally having had someone to talk to who listened to them and that is why we are supporting World Mental Health Day.

A mum that we support told me that without Rainbow Trust’s support, she would have had a mental breakdown. Her daughter was diagnosed with a brain illness and she was struggling to cope with the diagnosis, the prognosis and everyday life and what that meant for her child, the child she had so many dreams for. A Rainbow Trust Family Support Worker went into her home and gave her the time to talk, to share and to be heard. Having someone who really did understand what she was going through helped her express the emotions that she was struggling to manage. It is this outlet that so many parents say makes all the difference.

A mother told me last week that having friends around who don’t understand what it’s like to have a child with cancer has made her feel even lonelier. She said that her Family Support Worker really does understand and this helps her feel less alone. Our Family Support Workers have so much experience with families with a sick child that they can offer guidance and support in a way others without that experience cannot.

Loneliness can be terrifying

This loneliness is something that so many of the families feel and is also something that people with a mental health condition feel. We are social beings and we live in a society where we need others around us. For the families we support, they go from being a regular person living a normal life worried about normal things to someone who worries about how they will save their precious child. And this is when a Rainbow Trust Family Support Worker walks into their lives

With trust, the journey is easier

As a psychotherapist, I know that the basis of any strong therapeutic relationship is trust – without it a client does not feel safe enough to share his concerns, fears or anxieties and hence cannot move forward or heal.

It is this trust that our team of Family Support Workers instil in all of the families. They go into the family home and ask how they can help. They don’t tell them what they will do for them; they don’t tell them that they only have two hours’ worth of support – they ask the family what they need. Just asking a family, listening to their needs helps families feel more in control again – it gives them a voice in their chaotic new world that is terrifying. Parents need someone to listen to them, they need their voices to be heard at a time when they’re being told what to do, how to do it to hopefully save their child.

Having someone to talk to helps the parents we support to free up some mental space to manage their lives and all the new information that they are dealing with. It’s a release for their pent up fears and anxieties that so many of them hold onto for fear or breaking down in front of their child or partner.

Talking to someone can transform lives

As a psychotherapist I have watched people transform into strong, well-adjusted human beings just from having someone to talk to, someone who listens without judgement but with compassion.

Rainbow Trust Family Support Workers do this and more. So many parents tell me that the support they receive is non-judgemental and for that they are truly grateful. Family Support Workers talk to mums and dads, brothers and sisters and grandparents - we support the whole. Siblings are so often pushed aside purely to make space for the sick child who needs life-saving treatment. And while so many of them don’t want to ask for the attention they need, they still need to talk to an adult. A Family Support Worker is there for them too and spend time explaining things to them that they perhaps don’t want to ask their parents. Having someone to talk to can and does make a difference.

Emotional support is paramount for the families we support. Without they face their worst fears alone. Listening to someone is not a big ask but it makes a huge difference.

Julie Hynes is the Senior Communications Executive with Rainbow Trust Children’s Charity. She works in the Marketing and Communications Department and with the families. She is gatekeeper of family stories ensuring that they are written and used with the respect and sensitivity they deserve. Outside of her role at Rainbow Trust, Julie also has 10 years’ experience as a psychotherapist, qualifying in 2011.

** We surveyed a number of Rainbow Trust families against five different family outcomes; Quality of Life; Quality Time; Economic Wellbeing; Stability and Confidence and Managing Stress. Results show that all of the family outcomes improved considerably after six months.