Working with families during lockdown

The significant pressures placed upon service managers during the COVID-19 pandemic has been unquestionable. Challenges including staff shortages, difficult conversations with families and exhaustion have become exacerbated for most.

As for the families, the restrictions placed upon them have been hugely difficult to take, with even the most basic need for physical contact stripped away. Here, Dan Johnson, Choice Support, details the emotional and unpredictable reality of supporting someone with a learning disability and their family during the initial lockdown earlier this year.

Some context

I’d like to start by breaking the rules and telling you the ending before we begin. Why? Because I don’t want anyone reading this to go through the emotional rollercoaster I went through. I want you to understand the emotions, but I don’t want to put you through the turmoil of experiencing them yourselves. It wouldn’t be fair on top of everything else people have going on at the moment.

The person I’m talking about came very close to dying. He has recovered from coronavirus. He is now home, safe and well. There, now we know the ending we can get through this with some perspective. I am the professional after all. I’m going to try to give an honest view of what it’s like to be the person in the middle. The professional who is the only link between a family and their loved one during these ‘unprecedented’ times.

The beginning

I work for Choice Support, a national charity supporting people with learning disabilities, mental health needs and autism. I’ve been here for nearly 20 years. I can definitely say though, that nothing in my career so far could have prepared me for this.

In March, we wrote to families of people we support informing them they couldn’t visit anymore because of coronavirus. At the time, it was just a letter and I guess I didn’t really see the significance of what it was saying. It was the professional, sensible decision to help keep everyone safe and well.

In early April, I took a call from a member of my team on a Saturday afternoon. She was asking for help because a family member was extremely upset that their son – someone we support – was in hospital with coronavirus. This is when I became the person in the middle.

This was our second confirmed case requiring hospital admission. We were still supporting three people at home showing symptoms, along with another nine without. This was an outbreak of coronavirus, which we declared to Public Health England. This was one of the scariest things I’ve experienced in my professional career. I was scared others would become ill. I was scared my team and the people we support would become statistics. I was scared people would die if I made the wrong decisions.

Taking control

My team were understandably worried about their own safety. Many of them called NHS 111 and were advised to self-isolate, but that’s a different story! Let’s just say we were very quickly heading towards critical staffing levels. The remaining team were now working under immense pressure, and so was I.

My first phone call was difficult. I listened, I didn’t talk much, I absorbed the family’s distress and then asked how I could help. Professional. The biggest issue for them was an information vacuum, not hearing from the hospital. Thankfully, I could contact our learning disability nursing team. They passed me updates which I then passed on to the family.

In one conversation, I remember telling the family, ‘Things look good’…

A turn for the worse

The very next day, everything changed. I had to have a very different conversation with the family. ‘Your son has deteriorated; he has a very slim chance of surviving’. The words nearly stuck in my throat. The guilt I felt after being so positive the previous day. The fear that the next conversation would be to confirm the inevitable.

But it was ok. I am the professional after all.

It didn’t matter that I hadn’t slept properly in weeks. It didn’t matter that I still had to support the rest of the service. It didn’t matter that I’d worked every day for the last month and was exhausted, physically and emotionally. To this family, I needed to be strong while they went through this. It’s not my loved one.

Making it through

You know the ending already. I can’t quite explain the emotions I felt. Joy? Some. Relief, maybe? The family thanked me for all I’d done. My response? ‘No need to thank me.’ I had only been the person in the middle. An easy role to play.

You might be wondering why I put ‘unprecedented’ in quotes earlier. Well, that’s the word the Government and the media keep using. I’ve been through all of the emotions described above in the last few weeks and more. I can only imagine how hard it must be for families and people we support.

I wouldn’t use ‘unprecedented’ to describe being separated from your loved ones, the only contact being through a professional you’ve never met or spoken to before, all the time none of us knowing if someone is going to live or die. I’d use words like awful and terrifying.

But we are professionals, so we remain professional. We are always here and always will be. Even when families are not allowed to be. I hope that gives you some comfort, but we know nothing will ever replace being able to hug your loved ones.

At the time of writing, Dan Johnson, was a Regional Manager at Choice Support. Choice Support is a social care charity working across much of England to provide the best possible support to people with learning disabilities, autism and mental health needs. Find out more on their website.