How did the pandemic change life for sibling carers?

HOW DID THE PANDEMIC CHANGE LIFE FOR SIBLING CARERS?

IT WASN’T SMOOTH SAILING FOR SIBLINGS OF CHILDREN WITH DISABILITIES BEFORE THE PANDEMIC – AND THINGS ARE EVEN MORE DIFFICULT NOW.

For the estimated half a million children and young people in the UK supporting a brother or sister with disability, their needs often go unmet, and the past couple of years have deepened this impact.

Children and young people growing up with a disabled brother or sister are under more pressure and have more concerns than their peers. They also often get less attention from parents, and are required to help with household tasks and physical care, as well as offering emotional support for their parents. Loneliness and isolation has hit families with a disabled member particularly hard. Dr Georgia Pavlopoulou, University College London Researcher and

a Trustee of Sibs, the charity for siblings of disabled children and adults, says, “siblings are at higher risk of loneliness and/or lack of social support due to unexpressed emotions, fear of stigma, worries and awareness of community’s prejudice against developmental and health problems that their brother or sister face and fear of rejection.”

The Children’s Society report that as many as one in three young carers have been diagnosed with a mental health condition, a problem exacerbated by the Covid-19 pandemic. Staff on the ground have seen this first hand. Nicola Bell, Youth Engagement Officer for Carers Trust’s Scotland team, says,

“My engagement work with young carers and young adult carers over the past two years has highlighted the impact the pandemic has had on these young people and in particular, the impact on their mental health.” This powerful effect on mental health was mirrored in a new report by Sibs, the charity for siblings of disabled children and adults, which showed that 81% of parents felt their sibling child’s mental health had worsened over the course of the pandemic.

Many support networks, including schools, clubs and mental health programmes, stopped overnight. In a UK-wide survey commissioned by Carers Trust in 2020, 69% of young carers and young adult carers

felt less connected to others since the outbreak of the pandemic, an increase on an already prevalent issue. Lockdown and social distancing meant that families had to fill the gaps themselves, affecting everyone. One parent told Sibs, “The siblings have missed out on support from me as their brother needs more help, and they never once complained.”

Even before the pandemic, Nicola says that young carers, “were all too often spending significant amounts of time caring for a relative in addition to the time they needed to spend on education, work and time for themselves.” The Carers Trust also found that since the outbreak of the pandemic, one in five young carers have reported an increase in their caring responsibilities by 20-49 hours a week. This time pressure means that children who care for a sibling are less able to relax and spend time with friends, both of which are important for healthy social development.

The responsibility of caring for a sibling increases the risk of falling behind on school. Ideally, a school will be aware of the young person’s situation in order to help support as possible, such as, allowing extra time on school work, homework clubs and allowing them to use their phone so they can check in with the person they are caring for. Schools can also offer or refer families to services that can connect them to young carer networks, or provide guidance and support. However, the pandemic and funding cuts mean that resources at schools and elsewhere are restricted. One young carer interiewed by Carers Trust says “the support from the carers’ centre is amazing

but they are limited with what they can do due to the support/funding they receive.” The impact of the pandemic on an already poorlyfunded area has taken its toll. Clare Kassa, Chief Executive of Sibs, says “as one parent told us ‘they [siblings] are forgotten about more than the disabled child and the disabled child has been forgotten,’ so that says it all.”

Life for a young carer certainly isn’t easy, but Nicola from Carers Trust argues that, “there are many positive aspects of unpaid caring that shouldn’t go unconsidered. Many young carers that we work with note that they value how close they feel to their family members and feel a sense of pride as a carer. Young carers and young adult carers also develop incredible skills through being a carer, like resilience, timemanagement and empathy.” There is a growing movement to recognise this: “On Young Carers Action Day 2021, young adult carers were calling on employers to recognise these skills to increase employment opportunities for young people with caring responsibilities,” Nicola added.

To address isolation amongst young carers, the Carers Trust is calling on the UK government to provide:

• More commissioned breaks and respite for young carers and young adult carers.

• Priority access to mental health support.

• Greater monitoring of how local authorities are meeting statutory duties to identify and support young carers and young adult carers, including funded support packages which help young carers, young adult carers and their families.

In order to better support young family members, Nicola says that “as a society, we must break down the stigma attached to caring and raise awareness to ensure that young carers and their families are identified and fully supported,” as many young carers remain

FACT BOX:

SIBLING CARERS AND LOCKDOWN

43% providing more care in lockdown

40% feeling isolated and missing support from family and friends

53% that respite or a break would have helped siblings cope

Source: Siblings charity, Lonely Lockdown

unsupported and struggling. Clare Kassa from Sibs adds: “Siblings should not be the forgotten children. We call on government to make sure that siblings of disabled children are recognised as children in need of recovery support, as part of a whole family approach.”

It’s vital to make sure that adequate support is in place for a young carer to develop and thrive. As Nicola from Carers Trust says, “there are no limits to what young carers and young adult carers can achieve in their lives, when they have the right support.”

For advice from Carers Trust, visit www.carers.org

For more information on young carer siblings or to get help if you are a young carer of a sibling, visit www.sibs.org.uk/youngsibs/