Ongoing monitoring of PPMS

Primary progressive MS
1

My first post in this forum, hope it goes well.

I’ve been diagnosed with PPMS while living abroad, and moved to England in 2023 on a skilled worker visa. I’ve started a treatment with the NHS, which is handled pretty well. But I am very unsatisfied with the monitoring services offered to me by the NHS. By monitoring I mean (1) regular check-up with neurologist / MS nurse; (2) availability of MS team for questions and support, and (3) regular MRI scans to keep track of the progression of the condition.

When I looked into private health insurance, I only found ones that cover diagnosis and acute treatment, but nothing for ongoing monitoring and support. I also asked in a local private hospital, and they said something similar - they offer treatment, not ongoing support.

As someone that is relatively new to the UK, I would appreciate any advice on how to find ongoing support when the NHS doesn’t offer it.

2

Good luck with that.

In 20 years I’ve never had a second MRI scan, I’ve never seen an MS nurse, I’m not sure there even is an MS Team, certainly isn’t one where I live, and usually don’t get an annual review with a neurologist until I submit a complaint asking why it’s well over a year since my last one.

The NHS at its best and in an emergency cannot be beaten, but its MS services, along with other long term health conditions leaves a lot to be desired.

I’m pleased you’ve got treatment, something I’ve never been offered.

As for ongoing support, charities like the MS Society do their best to plug the gaps.