Making Sense of COVID-19: Sharing Family Experiences of Shielding to Influence Services

by Jan Sunman (Chair of Directors, Making Families Count)

This sunny morning jarred with my mood, as the nation goes into lockdown once again. I heard that the Government is asking people who have health conditions that make them extremely vulnerable to shield once more. I’m sure I am not alone in feeling that this was heart-sink news for many people. The thoughts of facing isolation and separation from loved ones all over again with no clear end in sight, despite the tantalizing offer of vaccinations feels almost unbearable.

Our small not-for-profit social enterprise Making Families Count, is running a small creative arts-based project to find out about the experiences of shielding people and their families who support them, funded by the National Lottery COVID-19 Emergency Fund. There has been a great deal of discussion about the impact of isolation on the mental health of people during this pandemic. We are aware from people we know personally who have been shielding, that they have felt invisible and have operated under tremendous emotional pressure. We felt strongly that there were vital lessons to be shared with health and social care services about shielded families to support them better.

I suspect that there are many untold aspects of shielding, with multiple facets and layers of meaning for each individual and family. My own experience has been that of supporting my son, who has severe learning disabilities and autism, who lives in a small residential care home about 20 minutes’ drive from me. My husband and I had moved over 135 miles to live nearer to him, after years of travelling for weekend and holiday visits, only to find that the pandemic separates us once more.

Although my son has several health conditions, including epilepsy, he was not on the clinically extremely vulnerable group, but he shares a house with several young people who are, so he must shield with them to protect them. We were deeply humbled and touched by the knowledge that some staff have been living apart from their own families to protect our young people. It is hard to put into words how much that meant to us that people who were not related to us had put my son’s welfare above their own.

We in turn decided that we must do all we can to prevent accidentally passing on this cruel virus to my son and the people he lives with. We felt we had no option but to shield ourselves. If we did not, it might have affected our ability to seize any opportunity to see our son when lockdown eased.

Life began to take on a different pattern and rhythm. Shopping arrived in bags, delivered from supermarkets when we got a slot. Walking outside felt fraught with risks. We had anxiety-filled days when we travelled in  our car to London for hospital investigations for my husband and relief that we had survived the experience. Our reward was a few days out with our son, wearing PPE, when lockdown finallye ased and we got the green light from our son’s team. We had four precious  weekends with our son during the summer before our all -too brief Christmas.

There has been little written about young people with learning disabilities who have been shielding. My son and most other young people in his house are not able to use words to communicate. We have found it heart-breaking to witness how it has impacted on them all. They have all missed their families and are completely bewildered as to why they cannot see them. As each week ticks by, they have shown their distress in different ways. For us, we have watched our son’s smiles on Facetime change to depression and frustration- a sense that he has been abandoned, as we have no way of really explaining why we cannot visit him. He has self-injured himself- hitting his dominant hand so hard that it became swollen, bruised, and infected. His key worker has been so supportive and has worked amazingly  hard to keep him occupied to reduce the times he does this, but we all feel this is the price of isolation for him. There was for us, as his parents, the constant background hum of worry in our minds, knowing that if COVID-19 got into his home, it would spread very rapidly. We felt disempowered by the changes imposed on us all- family life became fragmented in front of our eyes.

I know others have had much harder times than us. The lockdown and shielding made us painfully aware of families who have loved ones who have already had the freedom to meet up and share their lives taken away from them in other ways. For example, we began to understand a little, at a visceral level, what it was like to have a son or daughter locked away in a secure mental health unit, or the anguish of friends whose cancer treatment was interrupted by Covid with serious consequences.

This is why I felt that there must be others out there, with their own stories, whose voices need to be heard. Using creative techniques seemed to be a valuable way to help unlock difficult and sensitive experiences and share them so that health and social care professionals working to support them could gain a deeper understanding of their lives.

Making Families Count, as a user-led organisation, working with Sustainable Source, another not-for-profit social enterprise, who are skilled arts facilitators are hoping that you will join me in sharing your unique shielding experiences with other families, to improve support to people who are clinically vulnerable and their families. We look forward to meeting you, virtually and safely to gain strength from each other and to share our experiences.

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