Experience with the NHS - MS support
Hi all. I want to get some advice or hear other people’s experience with the NHS services as I’m feeling quite defeated but not sure if this is just to be expected in the UK.
I was diagnosed privately in June 2025 after being dismissed over and over by the GP (to be fair, I had very non specific symptoms). I went to a private neurologist, received the diagnosis of RRMS, got transferred over to the NHS and waited. I finally met with my MS consultant in October. Started discussions about treatment, got my vaccinations, did my blood tests etc. I knew I wanted to start kesimpta but couldn’t get hold of my consultant to confirm this until December which is when we agreed on Kesimpta. Since then, I received multiple calls from the MS nurses who clearly were never checking my records - asking me to get my vaccinations (I kept confirming I had already) asking me to get my blood tests and xray (again( kept confirming I had). I sent countless emails and had countless calls about being concerned about the weight. Finally, I was transferred over to St George’s as my hospital doesn’t actually do the treatment, since then it’s been great. Within 4 weeks of being approved, I finally started Kesimpta in April.
But, my MS team isn’t at St George’s. My MS team is at Croydon. At George’s have been great but I’ve heard nothing from Croydon. I was meant to have a follow up MRI back in January, I was meant to have a follow up appt with my consultant, nothing. My appt with my nurse team got cancelled last minute.they’re impossible to get hold of over the phone. I have an entire email chain which is just me replying with no responses.
Has anyone experience this? I’m wanting to transfer somewhere else but not sure what’s possible. Thanks v much