Pushing past the fear

Our weekly Voices of Covid series enables our team and users to share their experiences from life in lockdown. This week Claire talks about the changes she’s made with her carers to help her shield and the support she’s received from her social worker during this challenging time.

All over the world it is a very confusing time and decisions need to be made to ensure people feel safe from the pandemic. When coronavirus started to become more serious in the UK and before I official got told by the NHS and the Government, I decided to start shielding which then brought even more challenges. I rely on people to do mostly everything for me which means that I cannot shield 100% from the outside world. At the start of my shielding I still had my care rota as it usually was with my two main carers in each day for their full shifts and the agency I have still did their shift in the evening.

We did not know it at the time but, we were about to enter a whole new world, and it was time to decide how to keep myself as healthy and safe as possible. Care needs and living situations are unique in everyone’s own personal lives so, I could not just follow the same rules that I saw others doing. Some people were shielding completely with their partner or parents and having them do their care, others had their carers moving in with them. I decided to have my two main carers come in each day and cancel the agency for the time being. I am extremely lucky to have carers through Self Directed Support who can pick up extra shifts if needed. The agency was going to many different houses and I just did not find it safe to have them coming into mine too.

I still currently live with my parents who at the start of shielding were still working full time in their offices however, of course that has changed now and they’re at home more. They’ve also not helped me with my personal care now for about 8 years, so I feel more comfortable having cares helping me. Again, it is everyone’s own personal experiences.

Seeing the rules Italy were putting in place with fining people for leaving their homes, my first concern was my carers getting stopped for coming to my house. So, I contacted my nurse at the hospital to provide letters for them in case the police stopped them. Who would’ve known the UK weren’t as strict, they weren’t stopped once during the extreme lockdown and would give me daily updates on how busy the roads still were. It was better to be safe than sorry though. I then had to figure out a longer-term plan for getting PPE for my helpers.

I always ordered gloves online and did this like usual in March but, each week there was still no delivery. I actually only got told at the start of June that they could not process my order and I was getting my money back. Gloves were not the only thing I have had to buy though and the price for surgical masks was going up and up for a small quantity online. I was getting worried about how I was going to keep myself and carers safe, plus the never-ending negative news reports on PPE were not helping. Thankfully, my social worker got in touch though and helped me get the supplies I needed.

Now I have not had very much luck with social work in the past but, I must say they have been amazing during this time. I know it is different in every county so, I do understand it may not be great everywhere. However, where I live, they’ve been checking in regularly to make sure everything is okay and they’ve been keeping me up to date on any PPE changes, the first few weeks of receiving supplies it was changing regularly on what my carers had to wear and when they had to wear certain things. For example, because I am a ventilator user, they must wear a visor when I have that on, which I didn’t know until they told me. Everything seems to be steady now though and it is such an easy process when I am running out of supplies, I just email a designated email address and they arrive at my front door in a couple of days.

I think we’ve still got a long road ahead of us in terms of living with this pandemic but, I feel safe with the care I’m receiving and I don’t stress as much as I did at the start.

It is great to hear that Claire was able to get the supplies she needed and that her stress levels are down from what they were at the start of this pandemic. What have your experiences of life in lockdown been like? What or who has helped you? Let us know if you would like to share your story in our Voices of Covid series.

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