Missed infliximab

[EvieBaby]

I am so angry this morning. I should have had my 4th infusion today but a work problem arose yesterday and I had to come into work. You can only contact the clinic on one number which is always an answering service, apart from one hour a day when someone will answer.

I called yesterday and today and left messages, and this morning I received a very angry phone call from the nurse asking where I was. I explained the situation but basically was told this wasn't good enough, although there physically was nothing more I could have done. Apparently I should have told my boss to get someone else to work. Well, if I want to keep my job I won't be doing that.

I understand the importance of taking this medication but there are just times when things don't go to plan. And being made to feel like a naughty school child has made me feel terrible.

Will there be a problem because I haven't had this on time? It wasn't making any difference to me anyway but I still understand it takes time.

 

[FrozenGirl]

If it is only a couple days I wouldn't worry. My Remi nurse said I could move it 2 days on either side of my scheduled day if I needed to ( on a four week schedule) if you are on 8 weeks I think she said 4 days on either side.

It's unfortunate but sometimes you need to sacrifice something and you have to keep a job, so what are expected to do.

 

[EvieBaby]

Well she told me to go straight after work today but then called me back and said I couldn't come. I explained I was off all week but she told me they only do the clinic on a Tuesday and they were too busy this week and next week. I've missed one appointment in 10 years so I'm not a regular non attender. They just don't like my reason for not going and made it very plain they were angry at me.

 

[FrozenGirl]

That sounds like one vindictive person. Try not to let it get you too down. Life happens. They don't get to be the judge of what is and what isn't a 'good enough' reason.

 

[24601]

Agreed, this sounds like one particularly unpleasant person BUT I don't think this sort of attitude is that uncommon and I think it should be addressed (plus sometimes that helps you put it behind you too!)

I would contact your patients advisory liaison service and let them know about your experience. Dealing with a chronic illness is tough and juggling everything you have to to attend treatments will occasionally mean we miss something. It happens even with the best of intentions. And as you said it was once in 10 years! You did everything you could and shouldn't be made to feel bad on top of your anxiety at delaying a dose.

 

[SarahD]

I was told if I was going to miss an appointment to give at least 24 hours notice where possible, as the Infliximab is made up the day before your appt. If not it gets wasted, and it's a very expensive drug to waste.

 

[24601]

For the record, I've never been told that and I had infliximab in the UK on the NHS. I never missed an appointment so it never came up but I was not told that even if the possibility arose.

And the thing is that yes, it is an expensive drug, but there was no intention to waste the NHS resources here. EvieBaby did all she could and even if the infliximab was wasted there is nothing to be gained from being angry at the patient but there is a danger that you might make the patient feel that they can no longer continue with their medical care or cause damage to the healthcare provider/patient relationship. The NHS might be a service that we all pay for (and that none of us wish to see waste in as we realise resources are limited) but there has to be some benefit of the doubt given to patients who have otherwise attended all appointments and who have an understandable reason - even if someone might deem it insufficient, fear of losing your job is very understandable! And there's no reason to treat someone like a naughty school child.

I think the NHS is the most wonderful institution and incredibly precious but the fact that it belongs to all of us is not a good enough reason to casually judge others and there can be a tendency for some people to do that.

 

[EvieBaby]

The thing is I've been given very conflicting advice. I was told by one nurse that it will keep for up to a week once it has been made, and today they told me it was made on Saturday so its been sat for 3 days anyway. Today I felt that they just wanted to be obstructive. Every time I have this treatment I have to take the day off work and get 4 buses, plus get my daughter to school on time and be back to pick her up on time which is no easy task. I had the use of my friends car today and could have been there in 20 minutes so today would not have been a day I would just not have turned up for. I think it might be worth speaking to the patient services actually, just so they understand my point of view.

Interestingly enough, when I was on Humira I had 6 injections in my fridge when it broke down and I didn't know for a while until it had decided to warm up. Those injections were wasted and that didn't seem to be a problem even though that was probably just as expensive.