I have seropositive Rheumatoid Arthritis and am currently on methotrexate and Rituximab infusions. I would like to know if anyone has ever refused treatment before and how that works.
Essentially the hospital I am under keep loosing my paperwork and every year it is a battle to get my Rituximab infusions given. In 2021 they gave it to me 2 months late, 2022 I had to repeatedly call them daily for a week and they just managed to schedule me in time. This year they have lost my paperwork again and I have now spent 3 days making the same calls and leaving the same voice messages.
What would happen if I refuse treatment as the hospital can't seem to schedule it? Could I request for a different treatment plan?
Any suggestions or advice welcome.
UPDATE:
I spoke the the Rheumatology secretary yesterday who said that they have sent my paperwork off and it will take 6-8 weeks for them to sort it and then they will call to book in the Rituximab. No way it is going to get done in April now, she was saying I would be looking around June time (so 2 months late).
I asked for a Rheumatology appointment to make decisions whilst in the 2 month gap, and she said no point as next appointments are scheduled for late June. I have made a Pals complaint and booked a GP appointment to see if my GP has any wonderful ideas which aren't just take some steroids.
Some people have been confused about me saying I want to refuse treatment, I only meant change onto something else, change the treatment plan, not completely refuse everything.
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JulezH
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Surrey and Sussex Healthcare NHS Trust. The consultants are good when you are in the room with them, but they seem to be all over the place with their paperwork and procedures.
I am wondering if just requesting a different medication would be the way forward as at the moment I am losing about 3 months a year to feeling shit because they can't schedule it when I need it.
Comically, this is also the same hospital where I got given an injection of steroids in the bum, and mid pants down, a nurse opened the door and revealed me to the whole waiting room😩
I'd still make a complaint. Honestly, they bang on about the importance of getting on the medication as quickly as possible and then casually delay giving it to you.
Yes I agree with Brychni, do make a complaint. I suggest you write a letter (not email) to the Medical Director of the Trust and don’t be fobbed off!
As you’re sero positive and on Rituximab (usually given for severe RA) I would advise against you refusing treatment as you could find yourself in agony very quickly!
Hi JulezH, sorry to hear the issues you are having. If it would be helpful to call our Helpline, to talk this through and see if we can offer any suggestions, we are open 09:30 to 16:30 Monday to Friday on 0800 298 7650.
Good Afternoon, A few years back when I was on Methotrexate and Enbrel i always seemed to be getting infection after infection and ended up with sepsis. That is when they stopped all my meds and put me on steroids. Then after a few weeks they wanted to put me back on Enbrel and methotrexate but I refused to take methotrexate anymore. Ever since then i have stopped the steroids and have just got by with Enbrel even though they do not like this as every time I have an appointment they always ask me to start methotrexate or another drug to compliment the Enbrel, but I still refuse as now I rarely get an infection. X
i would do what others suggest and start by complaining to PALS and health trust.
If you refuse a treatment there is no obligation for the hospital to give you anything else, as what drugs you are offered is a medical decision not yours. To tread gently with asking for an alternative .
very terrible situation .Obviously it’s very upsetting and stressful along with disappointment which have brought you on this point but I would also suggest like others not to stop your treatment and try whatever you could do to solve this situation as here some people are suggesting you along with it di come on thus plate form and share your anxiety and stress too which would definitely help you not to loose hope and keeping fighting though breaking and falling hope moments..
Who have you been chasing the paper work up with. As you’ve said the consultants are very helpful I would probably start there. Do you have their secretary’s email address? I would email them and ask them to forward it on to the consultant explaining the problems and say you would like to explore the options of changing medication. If that’s not possible then try calling the secretary and ask if they can arrange an appointment (I’ve often found this to be quicker than going through the central booking system). If still no luck contact PALS. Personally I would do this by email so you have a paper trail. If you do it by phone make notes about who you spoke to, a summary of what was said and the date & time.
I’m not sure why you’d refuse treatment. If they do sort it I’d go for it as that would give you more time to discuss your options for other treatments going forward.
could you get referred to a hospital in a different county? I did this and now have to drive quite a long way and always take printed blood tests with me, but I am far happier.
I’m confused, you would seriously consider refusing treatment, and suffer potential long term consequences. Surely it would be much more useful, to have an open discussion about different biologics, that don’t present with the same issues. We should be working in partnership with our specialists, to jointly agree what would be best, and should not be dictated to. Rheumatoid arthritis affects more than the joints, and you risk damage to your heart and lungs, if inflammation is not controlled. You say they are very pleasant when you’re in the room with them, and I’m sure they will be as frustrated as you at the delays that have occurred. You also risk being discharged by your rheumatologist if you’re going to refuse treatment, and go against medical advice. I hope you can find something that works for you. Take care.
Not good…..being stressed out doesnt help our condition at all. Like Brychi said….ring or email PALS..they have always sorted problems for me almost immediately (Patient and Liaison Service)
It really doesn't matter whch hospital you are with, losing notes, info, appointments etc are commonplace. I have many similar reports from friends and family around the country. I wouldn't refuse treatment but would discuss alternative treatments with your rheumatologist if you are not happy. Medication isn't given lightly and you will only be offered it if you need it. Having no medication with this disease would be unbearable. Good luck
Well the first thing to do is make an official complaint to the hospital, if you google the hospital it will inform you how to do it, on the back of my appointment it gives a number to call or address to write to, thats just bad on their part.
1. Don't call it refusing treatment! That will just get everyone's feeling resistant to listening.
2. Ask for an alternative treatment if it is so difficult to arrange. Unfortunately rituximab is the only B cell inhibitor I think, so you would have to try a different route of approach to controlling the disease.
3. I think PALS should be made aware of the problems as they can help the department to access funds or people to help them with the mess they are in!
Don't refuse the treatment just because the hospital can't get its act together. That is a good reason for an official complaint - the treatment, when delivered competently, may be just what suits you.
However, there are occasions when a treatment is giving unacceptable side-effects - or not working for you - when you might want to question the treatment, or stop it.
This happened to me when I was prescribed Remsima (Infliximab). After 2 years, I informed my rheumy team that enough was enough, and stopped the drug. Later the team - forgetting that I had already stopped it - told me to stop having the infusions. It was, they said, affecting my heart!!
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