Foreword: Taskforce Carer Representative

Maxine Flewett, whose husband has IPF, discusses how the pandemic has affected her life and her hopes for the Taskforce in 2021.

We’ve spent this year feeling like we are sitting on a ticking time bomb that could go off at any minute. If Ron were to catch COVID-19 it could kill him. Our world has shrunk almost beyond recognition – with the exception of seeing my children in my garden for my 60th birthday, and another day in the summer when we saw Ron’s daughters, we haven’t had any face-to-face contact with family or friends since 7 March 2020. Nor have we been into any shops, or had our hair cut, or spoken to neighbours without standing behind the safety of our windows.

The pandemic has robbed us of more than nine months, and counting, of the chance to make special memories. Ron has his bucket list and we can’t fulfil any of his wishes while also maintaining the social distancing that is so vital for keeping him safe. It feels as though life is on hold.

Our friends, and family too, are impatient with us, they don’t understand the seriousness of why we need to shield and the implications if either of us were to pick up an infection, especially now it’s winter time when as well as COVID-19 there are plenty of other germs in circulation. Who knows when it will be safe for us to start interacting properly again.

COVID-19 has completely changed how Ron interacts with health services. He still has to have blood tests because of the medication he is on, when he goes to the surgery and see the nurses, but he hasn’t otherwise seen or heard from his GP. He has his own spirometer to allow him to check at home how much air he is able to breathe out. 

Initially Ron’s pulmonary rehabilitation (PR) maintenance course run by Royal Papworth Hospital stopped completely. Then in June it switched to being online. It’s not the same as being physically in the room, when you feel you can be properly observed, and pushed when you need it, but at least it’s better than nothing.

In August, Ron saw the lung transplant team. They have told him to go home and get on with life until March 2021, when they will assess him again. It’s a delicate balancing act to get the right time – he needs to be well enough to benefit from the transplant, but ill enough to need it. If we miss the time slot he won’t get the transplant at all. Even then he’d have to be one of the lucky ones, given that in 2019/20 only 159 lung transplant procedures took place in the UK, and with COVID-19 there’s likely to be even fewer suitable lungs available.

I feel really anxious, it’s my responsibility to keep Ron well enough and now with cases rising so fast again that’s a dreadful blanket of fear to have to live under every day. There’s nobody checking in on us, ringing to see if we are OK or need anything.

I think the Taskforce has done important work this year. There has been progress in helping to make sure PR continues online, as well as making sure annual checks and inhaler technique checks happen, and that more people than ever have their flu jab. There are also starting to be more stories in the media about living with lung disease.

Fundamentally if it wasn’t for the work of the Taskforce, I don’t feel that lung diseases would have any profile, and people like me and Ron wouldn’t have the chance to get our voices heard. So, my wish for 2021 is for the Taskforce to continue to push to give lung disease the same gravitas by the public and policy makers as other diseases.