Hi my dad is 75, diagnosed with relapsing MS at age 40.
His mobility has become drastically worse over the last 6 months or so, following switching drugs to Mavenclad. His appointments with the NHS neurologist keep being cancelled and have now been rescheduled to May next year which is just ridiculous. We have spoken to the NHS nurse to try to get an earlier appointment but she was not encouraging whatsoever and we don’t have much confidence that will happen.
I wondered if anyone has any recommendations for private Ms consultants please? Preferably in the northwest as he is based near Blackpool.
If you do a search on the consultant neurologist’s name there’s a fair chance you’ll find where he/she consults privately.
If you make an appointment, there’s also a good chance that the Consultant’s private secretary will be able to call up recent scans et cetera from the NHS system before the private consultation. At least that’s what happened when I saw an orthopaedic person privately having busted my knee and struggled to get much nhs follow-up. The consultant I saw saw privately was able to see the MRI that had been done by the NHS at the time of my injury.
It is unfortunate that appointments are not being kept.
There appears to be shortage of Neurologists.
It is unfortunate that access is not prioritised on need or time since last appointment but a random process.
Experienced MS Nurses can advocate but they need to use this sparingly.
It tends to be those with sharp elbows who self advocate who get seen.
I think age is also a factor as the assumption is the immune system calms down with age and there is little that can be gained from an appointment.
Unless your father is in the Chariots trial, it is unusual for Mavenclad to being prescribed which implies active treatment. The administration of the drug is unusual in its dosing pattern, but it is expected to be administered month 1,2,13,14 and then not for at least 34 months.
The monitoring is performed by the MS nurses with the bloods hopefully performed at your local Surgery.
If you want to pursue the lack of an appointment with PALS at the hospital. This can have mixed results but keep a note of when you contacted them and ask for process report if you have not received resolution after a month.
Thank you! As I understand it good Ms. Knowledgeable neurologists are hard to come by, my dad has had several bad experiences so I was wondering if any if anyone had any neurologists that they have had a positive experience with also
