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?

Write to PALS, ask them to cc your consultant, if you don't have their secretary's email, and the specialty clinical lead. The outpatient team could do a video consultation to count pills and go through your questionnaire with you. Ask if blood tests can be arranged local to you. It seems short sighted that a designated long covid clinic hasn't considered these potential issues given their patient cohort. Or, rearrange your appointment date 🌹

It sounds like a very poorly designed study if they have no protocol for subjects who are too ill to attend appointments. Good practice would be for a video call or home visit. Given that covid was the catalyst for virtual consultations and online appointments, that should be obvious!
If they chuck out people who cannot attend, their data are going to be skewed.

Thanks everyone.

Called them this morning. Said I'd do questionnaire when more able to handle screen. They said that was fine. I got a cab partway to a different station to avoid big interchange.

Wasn't expecting to do the sit to stand test - makes me really nauseous on much less nauseous days. Did tell them this when they asked and said I didn't want to, but they said to try...I did and got to two before I couldn't stop retching so that was pleasant for all of us!

They asked me to check I could access questionnaire- fair enough. Then they said to do a couple of sections of questionnaire - again I said screens were a real struggle today but 'tried'. I had to stop partway through as head was swimming and just asked them to read out the questions they wanted today.

When I have more energy, I'll feedback to study about pressure, expectations, respecting limits of capacity etc.

I have ME. There is no way I would put myself through what you have done today. Pushing through aka ‘trying’ is the worst thing you can do for your health. Frankly I’m shocked they encouraged you to push through - it shows a horrifying lack of knowledge about the illness they are supposedly studying.

If it's the trial I'm thinking of they offer up to £100 per day for travel. Get a cab?

I totally agree. Pushing through is what keeps us ill, unable to work, earn money, have meaningful friendships, participate in life fgs. The medics should know better.

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

That’s really odd. I’m not in UK but here, while clinical trials companies/researchers CANNOT offer payments (for good reason), they CAN and are expected to offer a standard amount that would patients would incur as associated expenses, meaning petrol/public transport costs. For this sort of trial I would think that would be bolstered a little to take into account people may need cabs etc, I can’t see that not getting past an Ethics Committee, and do the standard expense associated payment would be increased. I’m not familiar with such rules in the UK but you get nothing in lieu of basic associated expense payment? If not, that’s pretty terrible honestly.

I totally agree. Pushing through is what keeps us ill, unable to work, earn money, have meaningful friendships, participate in life fgs. The medics should know better

okay, but on that basis don’t ever expect new treatments to be available to you. That’s pretty much the long and short of it. It’s a case of you are putting something out, and understandably often a challenging imposition, to essentially get something back that will benefit yourself and others to come in the same situation.

@Littlegreene82 no where has the OP said she won’t be reimbursed for travel expenses

okay so if this enables a cab would that eliminate some of the burden of the ‘travelling across London station and big interchange’ aspect OP specifically calls out? I don’t know maybe it would, maybe it wouldn’t but it was put forward as a barrier.

Well yes, hence why I was questioning that aspect, as EC’s usually approve a higher base for reimbursement for pt pop’s that have these sorts of issues. So my question to OP is whether there is a base and if so does it take this into account. If it does (and it will be averaged in that some visits they may be able to do otherwise and some they may be able to take public transport), then would just hopping in a cab alleviate some of this - given these aspects involving public transport have been specifically called out.

Ask them to pay for a taxi there and back - if it's that important too then and just across London

@Littlegreene82 no, I haven’t, which is exactly why I have asked these questions. I have been involved in both of these aspects, but not in the UK, in another country with fairly comparable health system (I worked in the UK for several years but was never involved in a trial there). Seemingly, apart from my resume, I’m not really sure what you are asking me or why.

I have M.S and sometimes I have to cancel appointments, even with my neurologist because I just can’t make it.

Luckily they understand because they know what the illness is all about. Some of the symptoms are similar to long Covid, such as the fatigue, dizziness etc. These people should be more understanding, they are morons if they expect you to make such a journey.

Don’t feel bullied by them, stand your ground and tell them it’s impossible for you to make this journey safely. Also you would most likely have a relapse if you do try which will set you back, and that is painful and debilitating.

If there’s no tests involved there’s no reason why they can’t do a virtual appointment. Since covid this is becoming the norm, I have them now which takes away the 30 mile journey I’d have to make to see anyone.

People just don’t realise that you are so ill that you simply can’t leave the house, it’s impossible. You’re too tired to talk, you are completely drained and it’s like walking through a sea of mud, and lack of cognitive function makes it impossible to cope with the stresses of travelling on such a complex journey.

If they genuinely care about the people on the drug trial then they should be understanding, and this is what’s going to happen because the patients are genuinely too poorly to attend.

It's a trial. You can withdraw at any time.

Some of these posts have been deleted so I can't see what they were asking. AFAIK there's no money for expenses. This is a licensed drug, but used for other reasons - part of trial is to see how patients with long covid respond.

@Snippit this resonates "You’re too tired to talk, you are completely drained and it’s like walking through a sea of mud, and lack of cognitive function makes it impossible" - sometimes you just need someone to understand that don't you? Thanks for articulating it so well.