Date published: 08 March 2019 by Anna Jackson

Dr Finella Craig, Consultant in Paediatric Palliative Medicine at Great Ormond Street Hospital for Children (GOSH), talks to Rainbow Trust volunteer, Chris Evans, about the importance of supporting siblings of seriously ill children.

Can you tell me about the work you do at GOSH?

We look after children with life-limiting and life-threatening illnesses, where there’s uncertainty about their outcome. Some will be at end of life and others might be with us for a number of years or even discharged from palliative care.

What involvement have you had with Rainbow Trust and how have they helped the families in your care, particularly the siblings of seriously ill children?

Rainbow Trust are fantastic. What I love about them is they quietly get on with anything that needs doing for a family, whether it’s helping with washing, gardening etc or simply listening to their worries. They are particularly good at providing sibling support, so things like doing the school run, after-school care, helping them with homework or taking them out to do nice things. Siblings get so little one-to-one time, so having a trusted person from Rainbow Trust who makes them feel special and listens to their worries is incredible. When a child dies, Rainbow Trust can continue being there for the sibling to support them.

As a professional, working in a hospital, we also really value the help Rainbow Trust provide families with getting to hospital appointments. I think many of them just wouldn’t make it without Rainbow Trust.

Rainbow Trust is an understated service that is immensely valuable.

How hard is it for families to maintain a sense of ‘normality’ for all their children?

It is really tough. Looking after a sick child can take up most of the day. Even little things like sitting down to read with your well child for 20 minutes a day, or taking them to and from Brownies, can fall by the wayside. And no matter how much professionals empathise about how hard it is for families, it’s not going to get their child picked up from school at 3:30pm when they’re stuck at hospital. Families need practical solutions to everyday problems. This is where Rainbow Trust can step in.

What are some of the key issues that you see siblings face?

Siblings experience a range of emotions that include feeling sad, anxious, neglected, guilty and angry. Having a sick sibling or being bereaved can have a long-term impact on friendships and relationships and how siblings see their own value.

We also know siblings of sick children are less likely to achieve their educational potential unless they receive support, which is another reason why the support from Rainbow Trust is so important.

It raises some really important issues, some of which I’ve touched on already. The fact that children’s hospices are struggling to meet demands is a concern, and a lot of the families we see don’t use a children’s hospice so may not be able to access sibling support via this route. There are some national and local bereavement support organisations, but unless families are directed to them, they may not access them. So there’s not always an obvious pathway to support or a clear support service for every child or.

What advice would you give to families with a seriously ill child and siblings?

Look around at all your support options, especially practical help, like Rainbow Trust. At the end of the day, you’re the one holding everything together, and anyone that can come and help you with that is going to be valuable. Rainbow Trust will often be able to help you with the practical things other services can’t offer.