Too ill to attend appointment

[NotReadyForAutumnYet]

I'm on a long covid drug trial. They want to see me this week for follow up. It involves a couple of train journeys with big interchanges. I have had only a couple of hours out of bed yesterday. I say I don't think I can physically do it. They say to try and sent me a questionnaire. What do people do when too ill to attend appointment. Can not do screen v well today. Advice?

They said to try, I would tell them that you have tried but simply can't do it as you are too ill.

What do they do at the follow up? Can it be done over the phone? If they want blood tests, could they be done at your local phlebotomy centre/GP practice

If you can't, you can't, and, by the very nature of the trial, they will (or should) be aware that long journeys will be a problem for many of their participants. Contact them again and tell them it's not possible for you to get there and ask what they suggest.

I ran clinical trials for years. If one of my patients was too ill to attend I would arrange a home visit.

They just want their data. I get it. They either don't care / don't believe / don't understand the reality of the thing they're researching.

Thank you. I told them. No alternative was offered. They just said to try and booked an appointment in anyway and said it's important I see them. On a 'good' day, that appointment would knock me out. Can't even shower at mo - dizzy, nauseous, breathless, tired. They want to physically count the remaining pills, take bloods and see my questionnaire response. I 'try' every fucking day.

Sure! I'll mind over matter it then! Cured!

Can you break the journey? Book a hotel room so you're not doing it all in one day? Is there a better way for you to get there than the train? I have LC too and find public transport horrendous so can imagine how you feel!

Hmmm… have you ever had a chronic illness? Long Covid is awful and I wouldn’t wish it on my worst enemy.

@Davidscreen poster was joking, but thank you. 🙏

It's possible they'll take you off the trial, if they can't monitor you effectively it won't be safe. Annoying as it's people who would struggle to get to appointments who would potentially benefit most.

It's just travelling across London. To/from station and big interchanges. Breathlessness makes my nausea worse and am just not in a good place. I managed the last two times but know I can't in next couple of days. It will be the retching and vomiting too. Plus completing a v v long detailed questionnaire. I made it downstairs, but

I think you have two options. One is to find someone to come with you who cam support you and make sure you're safe if you feel ill on the journey.

The other is to say that you are too ill to make it but you are happy to speak on the phone, over video call or for them to do a home visit.

Another option is whether you can move it to another day, assuming that your symptoms are variable.

Could they do it on a video call so they can see the pills?

As a clinician I'd offer a virtual appointment. Much better than a phone call or nothing. And they can be very good to for engaging with patients as long as they have the technology to manage it.

taxi not an option either? would they be able to pay?

tell them that you are too illl with your long covid symptoms but you would appreciate a home visit. 'it's not far' after all for a well bodied person.

If it’s that essential that you attend I think they should pay for a cab for you. Have you asked about that?

Do you have anyone who could take you?

Frankly due to the very nature of the trial there should be plans in place for this contingency! Not a very good trial or understanding of long covid by the people looking into it 🤦‍♀️

don’t go and don’t worry about not going. Take care of yourself x