INFUSION

[chacha700]

I had my first infusion yesterday but I wish I had been given a proper talk through what to expect! how many people would be in a very tight place(small room) my blood pressure would be taken 6 times and I have white syndrome!! great, we were given a sandwich but only tea or coffee no water offered! I was very lucky to have an electric chair after I worked this out but not shown or asked for preference. nurses totally unaware until told where RA hurts knuckles elbows when the were injecting all in all No information for kind nurses until I told them they were hurting me due to my very bad flare and likewise I was very uninformed too.

[Juliachoo]

Oh dear I never realized it is like that like most on here I imagined you lay down on a bed! I have just started on biologic injections & was never given any info on infusions! I knew they existed & that’s all.. xx

[Pat9442]

Oh dear. My experience is quite different. Yes a small room and four reclining chairs. I chat with the others, we all have different drugs and experiences and most months we have quite an informative and jolly time. Tea and coffee offered continuously and if I asked for water I know it would be brought. Of course BP needs to be taken. I would be upset if I wasn’t monitored to make sure all was well!

My nurses are experienced rheumatology nurses and take great care to make sure pillows are in the right places etc

Were you worried about your first infusion? Sometimes a preconception can make the experience worse. Next time relax, chat and ask questions and I am sure it will be quie different

[Mmrr]

It seems to be an all too common experience, the lack of information and support being really common complaints.

It's not a time related thing, nor staff being under too much pressure, as information can and most probably should be given out whilst the nurse is admitting you , introducing themselves, getting you comfy, taking blood pressure, asking if you have a preferred place for the infusion. Bringing water as standard, domestic staff can do this.

It's about working professionally and it saves lots and lots of time and reduces stress, making the treatments more likely to be the best they can be.

My water deprivation test a few months ago was chaotic, with misinformation, no information and so on until I said to the nurse why don't you take 60 seconds just to explain when I'll next see you and have my bloods taken ? I don't want the TV adjusted, I don't want the TV on, use that time to tell me what's going on. (Wrong priorities).

The MRI technician was held bent on putting the cannula for the gadolinium into my inflammed, swollen , mis shapened thumb despite me saying no several times and offering my very easy accessible arm viens. After a long heated discussion he eventually accessed the arm vein first attempt, muttering that I was putting the investigation at risk. Then moaned how long the process had taken him ! It could have been over minutes before, had he not made a very poor judgement on where the cannula should go and listen to me, I get bloods taken often enough !

I'm not sure if this type of thing has always happened on a big scale , or it's a new phenomenon, but it is not always time nor pressure that leads to poor information. It's often attitude.

Students would randomly approach me when I was still working ending information, wanting to talk. If I had time I spoke with them, if not I made an appointment, sometimes I said if it's a quickie and not confidential, walk with me and we can talk on the way to my next class and we can chat on the way. But I never denied information, that was part of my job.

(Sometimes I'd run into a cupboard and silently scream, sometimes I had a large glass of wine when I got home, sometimes I walked home quickly at the end of the day, pounding the streets with built up aggrivations, but I didn't give attitude to students.)

Let me just say it, if you are unkind or uncaring to ill people , you are in the wrong job.

Full stop.

The higher the status (and salary) the more you need to move on and look for other work, perhaps not involving direct contact with people.

[Evaibrahim60 in reply to Mmrr]

Yes I had very bad experience while in hospital and even when I said this is painful, they told me it’s not because they know better as they studied all the facts. I told them you have the theory but I have the experience! 🤔

[Mmrr in reply to Evaibrahim60]

I am not unkind or aggressive with staff, but I do say it straight now.....no I don't want that but thankyou for offering; actually that is painful, why are you saying it isn't? ; that would be contradictory to everything I've read; would you like me to book another appointment when you are less rushed ?

I find the straight forward questioning works.

[charisma]

Not so good personal care, it seems. Perhaps different areas of the country the procedure is assigned to general nurses rather than the Rheumatology Dept?

I hope it goes better for you next time and you get what you need without a battle.

[AgedCrone in reply to charisma]

In most health authorities in England the nurses who give infusion are all highly qualified ..usually they are chemo infusion nurses who have special training to administer Biologics....which have different protocols from chemotherapy.

Rheumatology nurses have different qualifications...they don’t actually administer the drugs...they prescribe them under the supervision of the Consultant Rheumatologist.

I once had a nurse in training......I think because I am an ex nurse & they knew I would speak up if there were any problems. It was on this occasion I realised how really skilled the fully qualified infusion nurses are. The nurse in training was finding it very difficult to coordinate the various stages & much as I felt like saying “It’s usually better if you do this first”...I kept quiet...& my infusion took an hour longer than usual. Six months later I had that same nurse & everything went smoothly.

But if you feel that there is something you don’t understand, or are uncomfortable about ...do remember nurses are not mind readers. Just have a quiet word & ask about your query quietly & calmly....they will be very happy to put you in the picture.

In most units there are Health Care Assistants who do TPR’s & they are responsible for seeing that you have water, tea coffee etc.

Like anything...if you don't ask, you will never know!

[AgedCrone]

You were lucky to only have your BP taken only 6 times.

My infusions usually take six hours & that can equal BP x 24 times..every 15 minutes if there are any wobbles..but minimum12 times!

Next time do talk to the nurses & ask questions...they don’t automatically know who hasn’t been infused before.

Hope things go better next time.

[chacha700 in reply to AgedCrone]

Wow

[Lolabridge]

The advice I received from others on here before my first 6-hour infusion was:

•Drink lots of water in days beforehand,

•take your water bottle with you and fill it before you go in so you can keep drinking to avoid possible headaches,

•take a book/magazine/iPad/Kindle/puzzle book to stop you from getting bored,

•take food/snacks with you (especially if you don’t want to risk hospital sandwiches),

•take a wrap/blanket/cardigan/hot water bottle so you don’t get cold or for additional comfort,

•ask for cannula to be inserted where you want it (some prefer in arm not hand so hands kept free).

I took the lot and was glad I did!

Hope you have a better experience next time.

[Twitty999 in reply to Lolabridge]

Thank you for the information 😊. I feel ready to face my first infusion now 🥴😊🙃x

[chacha700 in reply to Lolabridge]

Thanks I feel more ready for number 2 infusion in just over a weeks time now

[rab1874]

I’ve been lucky as have had biological injections up to now, as I travel to Glasgow from Oban for my appointments so my Rheumy is trying to keep me off infusions as long as she can but I’ll be prepared well if I have to get them, I hope your next ones better and goes more smoothly xxx

[chacha700 in reply to rab1874]

I went on infusion due to getting Bowen on other biological treatments

[orange33]

Hi yes I had very poor info for this,however I took the same as lolabridge with me.

My infusion was for Periferal nuropathy but the infusion is the same.

I was really nervous but the nurses are very professional. It was extremely busy ward.

I was in a very comfortable chair with pillows. Best to try to have nap.

I hope you feel better soon🙂