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Caring in the pandemic: Don's story for Carers Week 2021

Don BreretonIn a number of ways, coping as an unpaid family carer during the pandemic was similar to life before. As an older carer for an adult son with learning difficulties there are always limitations on travel, leisure and respite for both of us. These responsibilities had reduced for me in recent years as together with my late wife we had secured for our son Sam a supported living place with two other adults with learning difficulties. Sam happily regards this as his home during the week and is looked after by live in carers when he is not attending day service activities.

At the start of the national lockdown, the immediate – almost overnight – change for us was that all day services just stopped. The next urgent question was the safety of arrangements where Sam continued to stay in the house supported by a rota of care staff and spend time with me at the weekend. There was no-one to ask for guidance. All channels of health and care provision were concentrated on treatment of people in hospitals and residential homes. In the end I made my own decision to keep Sam with me although he was not officially classed as someone who should be shielded. By the time of the second national lockdown he was classified anyway as requiring shielding as an adult born with Downs Syndrome.

So Sam and I lived together for the following five months. Like most people we used phone and video to keep in touch with friends and family. We have a comfortable apartment surrounded by pleasant gardens and had no financial worries. Sam was safe to leave asleep when I had to shop for food and daily necessities. His two sisters live in the same area of London and could visit and talk through doors and windows. We were also blessed with neighbours who wanted to keep in touch and we were able to sit outside in the sunshine and exchange greetings.

As Sam, like many people with learning disabilities, has a sunny and loving nature this does not sound too difficult. A constant worry however was the possibility of one of us becoming ill. Given the absence of any specific guidance or support for family carers there was no plan for dealing with that possibility. This worry together with the tasks of supporting and caring for Sam 24 hours a day left me feeling frustrated and angry at times.

My thoughts now focus on the very many carers who have far heavier responsibilities than I do and have to manage with less family support, less money and less secure accommodation. It is no surprise that the figures collected by Carers UK show such a steep rise in the numbers of carers and the hours of care required. Many day services remain suspended adding an additional burden to unpaid family care. I feel for all those families who have lost carers and other family members. I also share the concerns expressed widely about the damage that may have been caused to physical and mental health. Sadly, previous commitments by government and local authorities to identify, value and provide support and respite to carers just vanished. Nor is there any hint in current policy papers like the Health and Social Care White Paper that they will be reinstated. In my view, this is a national disgrace and I hope that everyone will support Carers UK in seeking to put this right.

Don Brereton CB, Vice-President of Carers UK

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