Living through the pandemic coronacoaster has been even more challenging for those of us who have been shielding to protect clinically vulnerable siblings.
My brother Dan has Profound and Multiple Learning Disabilities due to a rare genetic condition called ATRX. Our younger brother Sam who had the same condition passed away suddenly from sepsis and pneumonia in 2019. The risk of Covid for Dan is a very real threat, he’s had hospital admissions in the past for breathing difficulties. He is unable to tolerate wearing a mask and therefore struggles against ways of easing his breathing if he gets into difficulty.
Our family went into full lockdown on the 17th March 2020 a week before any restrictions were put into place by the government. I moved back into my family home and for more than 3 months myself and my parents provided all of Dan’s care. We had to rely on neighbours to drop off food until we secured a delivery slot, I went on remote walks on my own and Dan had to adjust to being inside the house for 101 days. I was humbled by how Dan adapted to this new normal, fearful for how he would manage returning into busy environments. I had no idea that 2 years later we would continue to be struggling to keep him safe.
We’ve had to advocate for Dan’s need to be on the shielding list, his need to receive the vaccine ahead of others in his age group, the need for the vaccine clinic to accommodate reasonable measures for him. We’ve had to tolerate the narrative of ‘vulnerable people should stay at home so we can get back to normal’ which is both hurtful and pointless, Dan isn’t safe to simply stay at home unless every person that provides his support is able to test before coming into contact with him.
We have missed our favourite activities as much as the next person, the main difference is that whilst generally the public may be celebrating an end to all restrictions, I’m afraid I’m going to lose the freedoms that those ‘restrictions’ allowed me. Zoom choir allowed me to continue to be part of a community that I’ve been a part of for 14 years, now because I don’t feel safe to attend in person I’ve had to give up my membership.
My parents went for lunch last week, they entered wearing masks and asked to be seated near to the door in a quieter area only to be informed by the waiter that restrictions had ended. I have cautiously been able to meet with a couple of friends in a well-ventilated area, keeping my distance and knowing that those friends had been able to take a Lateral Flow Test (LFT) beforehand to keep Dan safe.
When the Government announced the end to all restrictions including the free access to LFTs it caused a peak in my anxiety akin to the very start of this pandemic. I’ve started a petition asking the Government to continue free access to LFTs after the 1st of April. Currently in England the plan is to allow support workers and people who are Clinically Extremely Vulnerable to Covid like my brother access to a test if they have symptoms. This is not good enough, we need to protect those who are vulnerable to Covid from coming in to contact with those who are carrying the virus in the first place. Please help me raise awareness of this issue by signing and sharing the petition.
Photo credit, Paul Wenham-Clarke Our Human Condition