Eleven years old and caring for a brother with a severe learning disability, epilepsy and autism

Today we celebrate Young Carers Awareness Day (YCAD) – a day to remember the huge amount of care provided by 700,000 incredible young people across the UK.

Thousands of young people have the huge responsibility of caring for a loved one, often helping out in practical ways by directly supporting a sibling for example, or a close friend with everyday tasks. Sometimes the care they provide is emotional, helping by showing much-needed love and compassion.

Jill Crook, Transforming Care Programme Lead for NHS England (South) explains: “We are committed to seeing an improvement in the care provided for those with a learning disability and central to this is increasing the amount of care that is provided either at home, or support to live in more community environments, ending the need for a person to live in an institutionalised, hospital setting.

This is what the Transforming Care Programme is all about, seeking ways to put in place the right care, allowing people to live more independent lives, closer to the family and friends and all the valuable support they can provide. Find out more about the programme and the real progress we are making in the south of England on our website.”

One little girl, Gabriella Balfour-Allen, plays a vital part in helping her brother and parents by providing the very special care and support that only a sister can. She helps care for her brother Samuel (age 10), alongside her parents and with lots of support from her local Carers Trust.

Samuel has a severe learning disability, epilepsy and autism as a result of a life threatening, genetic condition called tuberous sclerosis complex. Their dad Martin has the same condition but is more mildly affected.

Gabriella and her brother Samuel

Gabriella helps care for Samuel after school and at the weekends. He can be very demanding and disruptive; Gabriella helps calm him down, keep him safe and make him happy. Mum Sally says Gabriella is “the best thing for Samuel”.

The family find it hard to have all-important family time together as they cannot do usual activities such as going out for meals, going to the cinema and days out because Samuel finds it very difficult or cannot cope.

Gabriella with her mum Sally

Gabriella can have friends over but restricts this to friends that know and understand Samuel. If she has sleepovers or parties she has to have these when Samuel is in respite (he has overnight respite care three days per month).

Gabriella says: “Looking after Samuel can be hard but it’s all I’ve ever known. He’s just my little brother.”

One of NHS England’s 10 business priorities for 2016/17 is to transform care for people with learning disabilities, like Samuel, but with a particular focus on individuals with a learning disability, autism or both, who currently receive care in hospital, away from home.

In the south of England, 14 Transforming Care Partnerships are working to support individuals’ lead more independent lives and have a greater say about the care and support they receive. These partnerships are working to improve services, reduce the numbers of people receiving care in hospital and provide more community care, at home or nearby.

Carers Trust organises YCAD annually to raise awareness of the 700,000 young carers across the UK caring for their sick, disabled mum, dad, brother or sister. Find out how this impacts their lives by visiting Carers Trust and join the conversation #YoungCarersAwarenessDay