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Living with IPF, I’ve felt forgotten

John lives with idiopathic pulmonary fibrosis (IPF) and is practising social shielding. He shares how he’s adapted.

John, who lives with IPF

Since the coronavirus outbreak, we’ve all had to adapt. Most of all, those of us who are clinically extremely vulnerable who have been advised to practise social shielding. This means staying at home and avoiding face to face contact until at least the end of June. 

I know that lots of people are anxious while they need to shield - and the prospect of shielding for some time. There’s also the concern about a possible second wave of infection as lockdown measures are lifted.

At times I’ve felt forgotten

As someone who lives with an interstitial lung disease (ILD), I think there are lessons to be learnt from how people in vulnerable groups have been communicated to. At times I’ve felt forgotten by the government. It’s fallen to respiratory charities, such as the British Lung Foundation, to provide advice and support to help keep us safe.

I think there are lessons to be learnt from how people in vulnerable groups have been communicated to. 

My wife and I made our own decision to self-isolate in early March. We were encouraged to decide for ourselves what was best, an approach we’ve continued ever since. I didn’t get a shielding letter until I got in touch with my consultant - who provided the letter on the same day. Three days later, I got the same letter from my GP! I had contacted my GP practice the week before to ask about a letter for the extremely vulnerable, and they had no knowledge of what I was talking about! I’ve heard the same from a lot of people I’ve spoken to.

My usual care has been adapted

I've been relatively lucky that so far, contact with my care team has been kept up with a combination of video and telephone calls. I can also manage my symptoms well and since I've registered as a vulnerable person, I’ve been able to arrange convenient online shopping deliveries. I am concerned though that my condition won’t be as closely monitored and managed as time goes on. Already I’ve had appointments cancelled, as has been the case for a lot of others I’ve spoken to. Someone I know has a new next appointment arranged for January 2021 – a lot can happen to a progressive condition in 8 months.

It's so important, now more than ever, to look after ourselves and look out for each other.

My support group is more important than ever

I run an ILD support group which I’ve been able to continue to host virtually. I realised just how important these meetings are at the moment, and so now we meet more regularly to offer each other much needed support. We share our experiences and tips for coping with shielding, and it helps reduce the impact of social isolation. We also have a PR specialist join us to take us through various exercises and breathing techniques, so it's not a passive event! Some of the group have a good network of friends and family to support them, so they seem to be doing OK. But I do know there are many who are shielding but with no garden and limited access to technology, who are suffering greatly.

I know there’s a feeling among many in my situation that we were forgotten about by the government. My lung condition wasn’t recognised from the beginning as extremely vulnerable, leaving us to have to work it out for ourselves. This makes it so important, now more than ever, to look after ourselves, look out for each other and look out at the clear advice from the BLF website.

We've just launched our new information about what to do about coronavirus if you live with an ILD.

Check out the information

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19 May 2020