Chapter 6: Enable all children, young people and adults to maximise their capabilities and have control over their lives
Impact of the pandemic on carers
The lockdowns were really hard, I have two sons with special needs, they didn't understand what was happening when they couldn't go to their day centres anymore. One of them started to self-harm because of all the changes and loss of routine. Being in the house trying to entertain them all day was difficult; my husband has a heart condition so most of their care needs fell to me. We had to fight to get one of my sons back into his day centre when the lockdowns eased, and to try to get the same taxi driver who he knew and felt comfortable with. My boys are now back at their allotment project, but they're confused because some of the staff and their friends still aren't back. It's good to get some respite again though and be able to get out of the house.
Service user, Tyneside Women's Health Project
We went into isolation on the 17 March. We were scared, the news around Covid was terrifying, it seemed you were either a bit poorly or dead, we had no backup plan for if we got sick, as the sole carers for a child with cerebral palsy and one with autism it's not as easy as asking a neighbour to watch the kids for you, you need support from trained professionals.
We had no social worker at the time, ours had left in February. No one had a plan for carers or the people they cared for in emergencies. Respite was closed and we had no carers coming in, so it was just the four of us for seven weeks and we rarely left the house. At the time we lived in Gateshead in an ill-adapted terrace house.
Our eldest son slept in the living room due to him having cerebral palsy and being too big to carry upstairs. We spent seven weeks in complete isolation and spent most of the time in one tiny room. We felt forgotten about.
Claire, Carer
We don't get Universal Credit, but one of the things we found horrendous was the transition to adult services, we've still not met our transition social worker due to Covid restrictions.
Managing and finding carers to assist with moving and handling post surgery during Covid, dealing with own health problems while trying to care for disabled child and the restrictions around obtaining and viewing alternative respite for 18+ during the Covid pandemic.
Carer, Gateshead
Young carers
As lockdowns began, families struggled to get food due to store delivery slots being very difficult to obtain. We needed to support some families to obtain food parcels, particularly if they were shielding or had health issues that prevented them from leaving the house. One young carer, when questioned why he was accompanying his mother to the shop, showed the Young Carer ID card that we provided, and both were allowed to go in together.
Young carers worried about the person that they cared for catching Covid due to their vulnerability, especially when they returned to school and feared bringing the infection home. Many young carers seemed socially isolated and appreciated telephone calls and Zoom sessions with the Service. A high number of the young carers we supported during the pandemic struggled with increased mental health issues. We noticed a significant rise in issues relating to sleep disturbance, anxiety and depression, and reports of self-harming and eating disorders among our older young carers increased. Due to the reduced availability of suitable mental health services, our team needed to deliver increased one-to-one support to a high number of young carers during the pandemic.
Becky and Louise's story
Sisters Becky* and Louise* live with their mam, dad and younger brother, Danny*. He is on the autism spectrum and his behaviour is very challenging. He can be aggressive and violent, particularly towards Becky, who normally spends a lot of time in her bedroom which she must lock to keep her brother out. Caring for Danny is always difficult. The pandemic added a different set of challenges, including home schooling.
Dad was working so couldn't help through the day. Mam didn't understand the work that was being set so she couldn't help either. The family didn't have a PC and a printer, so they were unable to access schoolwork online and relied on work being sent in the post. When work was delayed, Becky would have to work for longer to try to catch up. The family were eventually able to get Becky a laptop but completing work was still difficult as she would have to lock herself in her bedroom where she had a poor Wi-Fi signal. As Danny spent less time at school, his parents had to spend more time supervising him. The whole situation was distressing for the family, especially Becky, who was often tearful. The lack of social contact was difficult for the sisters.
The Young Carer Service was able to offer some support. Both children applied to the Wellbeing Fund, with Louise getting a tablet so that she could play online with friends, and Becky getting AirPods so that she could listen to music and ignore her brother's shouting. They also attended online activities with the Service, which helped them to feel more connected.
*Names changed to protect anonymity