UK Ocrevus folks, what does your care look like
I’m seeing the MS nurse specialist next week and I really feel that I am not getting good care and I have to remind and argue for everything, but perhaps it is standard so I’d really like to know others experience to give me some context if anyone wouldn’t mind sharing?
I’m wondering about stuff like, how often you see the MS team (nurses and/or Neuro consultant), any blood tests or other monitoring (regular or pre-infusion), frequency of MRIs, lines of contact if you have any issues between appointments, any contact with other professions for support?
I’m a nurse myself so very aware of the pressures but I’d be very upset if one of my patients felt as unsupported as I often do but perhaps is it standard practice so really appreciate the feedback.
Thanks 😊
Hell9. Sorry that you're going through this I see my MS nurse annually, but get sent the labels for my bloods 6 weeks before the next infusion. Usually. Last September, I should have been sent labels, and chased when they didn't show up. Turns out, it had been missed and MS Nurse was on holiday when I sent my chaser email, so infusion had to be delayed. The same MS Nurse went sick, then left the position they day after my annual meeting (1st November 2024), so it never was recorded and agreed actions never happened. Not great for me, but feel there must have been something going on with the nurse too. I did have a phone conversation with the replacement MS Nurse a couple of months ago to rehash the November meeting and start the ball rolling on the previously agreed plans (liaising with other professionals).. Do have a general neurology email address that can get to either nurse or consultant. Get MRI every 18 months. So care has been inconsistent for me, but not disastrous.
I have to say, I feel very unsupported with my MS team and my GP! Just because I’ve got increased allergies they say they don’t know how to help me! I was left in pain for over 4 months before getting help from the tone clinic for spasticity in three limbs! I find the whole process quite frustrating really, as all my GP wants to do is off me steroids or medication I’m allergic too, which is on my records! I feel for you, but I guess all you can do is fight your corner and complain.