Henry Scowcroft

So I think when the pandemic first hit, a lot of clinical cancer trials had to be paused or recruitment was suspended.

I think in a lot of cases, heaven and earth has been moved to try and keep as many patients as possible on treatment, particularly those who are responding really well to drugs.

But where there are treatments where I think the agent in question, if one were taking that and happened to get COVID, that would pose a particular risk.

or in treatments where, for example, the side effects could be quite severe and might require intensive care should anything go wrong, those sorts of treatments were stopped.

So although a lot of patients are able to carry on receiving therapies on trials, a lot of patients have had to pause things.

In addition to that, because trials have had to close to new recruitments or trials that have been in the process of being set up have had to

stop that setup.

A lot of trials aren't going ahead to new patients, new recruits which as you can imagine causes a huge amount of anxiety among people going through current cancer treatments particularly for advanced cancer who basically face the prospect of options they might have had down the line potentially being taken off the table and that can be a really worrying and distressing thing and we've seen a lot of people in that situation really desperate to get research back up and running.

as soon as possible and as soon as practical so that those options can be back on the table for them.

When the pandemic hit, a lot of guidelines had to be drawn up incredibly quickly and I think it's fair to say that in that initial phase, patient involvement around those guidelines wasn't as good as it could have been.

But that's partly a function of just the speed with which it all had to happen.

But also just I think a sort of fairly regrettable state that often patient involvement in that sort of thing is one of the first things that gets dropped when things need to happen quickly.

But I think because those guidelines have been iterated, I think there's been a lot of scope for feedback to be captured.

I know there are regular dialogue between charities and the NHS.

to make sure that concerns have been flagged.

One example that was told to me the other day was a particular guideline talking about lung cancer, whereas in actual fact it meant cancer that had spread to the lungs.

So those kind of refinements get captured and built into new versions of the guidelines.

I think the aspiration from here on is that there will be more patient involvement as guidelines get refined and new guidelines get drawn up, particularly around as the lockdown eases, as services are recovered, as services get going again.

And I hope that there's a lot more patient involvement around this sort of stuff.

I am not aware of any recovered from COVID patient networks yet in operation.