Date published: 08 July 2019 by Digital Team

Across the UK, there are thousands of young people, like 15-year old Emily, whose brother Ben has a condition called Spinal Muscular Atrophy. Often carrying the emotional weight of their parents, young people with a seriously ill brother or sister, like Emily, are left feeling overlooked, anxious and lonely, which can massively impact their mental health.

Speaking in front of a packed audience in the Houses of Lords, 15-year-old Emily bravely called on the government to ensure educational institutions are more well-equipped to support young people who have a sibling with a chronic illness.

For most of her life, Emily, who is three years younger than Ben, says she’s been more like a big sister to her brother, who needs constant care.

‘‘A great deal of my life has been based on his needs’’ says Emily. ‘‘When he is ill, I must fit in with everything that goes on because of it. If he is in hospital or at home, mum and dad spend so much time getting him better, they are too tired to listen to me, spend time with me or help me. I find this annoying at times and a lot of the time I feel lonely.”

Emily is currently working hard towards her GCSE’s and recently moved to a new school which she says has a better understanding of the needs of young people who have a sibling with a disability.

Looking to the future, Emily says the lives of young people in her position would be greatly improved by having help at home to ease the stress that can build up over time.

“Our Rainbow Trust Family Support Worker has been a great source of fun and has taken me on days out, horse riding for example, where I can forget about my worries at home,’’ says Emily.

“Our Family Support Worker has always been around to help transport me around when Ben is in hospital. Rainbow Trust also introduced me to another charity where I have been able to go on a week residential and enjoy time with other siblings who understand my situation. But mostly it is always helpful to have someone who is separate from my family who I can talk to and will listen and not judge me; the impact of this cannot be underestimated.”

Emily says her dad Doug, who was in the audience as she delivered her speech, often describes Rainbow Trust as their fourth emergency service.

“Rainbow Trust have been there when we were up, when we were down or even preparing for times when Ben has been in hospital for long periods of time’’, says Emily.

“When we knew our Family Support Worker was coming, that was something we looked forward to. Ben and I knew that fun was on its way and it would be a welcome distraction from fears and anxieties because that is our normal. Imagine not having that to look forward to, not knowing that Rainbow Trust existed and never knowing what support they give a family. Our lives would be totally different.”

To read more about why the pressing need for sibling support is increasing, read our report ‘See us, hear us, notice us’.