Having started a clinical trial which is being run from a remote NHS Trust, I am considering switching from my local NHS Trust for my basic MS care.
It would seem to make sense as although Research team for the Clinical Trial are separate from the Operational team at the “new” place, there should be benefits of continuity / less duplication, e.g.
- At top level, the consultant heading the trial also heads the MS Team for that hospital
- Get review appointments to coincide with Trial appointments
- MRI’s etc. can be shared.
- Infusions for trial done in same room as the Trust patients.
Also, Local NHS Trust MS Team have already suggested I talk to Trial Trust when I asked about some pain meds as they wouldn’t want to prescribe anything conflicting. Feels like they’ve already pulled back from me.
However, I’d still want certain things to be done locally e.g. Urology, Physiotherapy.
So what should the protocol be? I’ve spoken informally to the Trial Trust and they have said No Problem.
- Should I approach my GP Surgery as they are the commissioner for providing the service?
- Has anyone else done this and what were the pro’s & con’s?
I have no ideas to give you, but it does seem to make sense for you to do that.
Update: made the change and it’s chalk & cheese! New NHS Trust is proactive, updates results & meeting notes within a couple of days instead of a couple of months and sound genuinely interested, friendly and helpful. The previous one was reactive, hid behind emails and answering machines and the consultant took many weeks to turn around meeting reports and next actions.
So NHS Trusts DO VARY considerably in performance. I’m sure there’s a back-story, like staff resource issues but am sure it’s a question of management too.
Are you still on the trial? How are you getting on?
My trust seems like your old one slow turn around on results and almost secretive! (Paranoia much!) I’m glad you are getting somewhere where you are now.
No, trial terminated after a few months. It was for one of the new BTK inhibitors but it seems they (there are 4, I think, trialling currently) have a tendency to spike the liver function in some people (under 10%, more than 1%) and I’m one of them.
As luck would have it, though an awful sort of luck, new active lesions have been found in brain & spine, so I’m now eligible for ocrelizumab. Originally, I was ineligible for ocrelizumab because there were no active lesions showing on the MRI’s, even though disease progression was obvious. A case oif “Smouldering” MS. That’s the NICE rules in the UK for approving ocrelizumab…
So two things will be intriguing in the next few months:
- will the ocrelizumab slow my progression?
- I’m wondering if the original NHS Trust missed the new lesions for some of the 2 years I was with them (which would suggest negligence) or if the newest MRI really is the first manifestation of these new lesions. We’ll see…
good luck with ocrelizumab, I hope it really helps you.
I really hope they did not miss new lesions. Do you have copies of the old MRIs
Was the latest MRI done on a better, higher resolution machine?
I don’t know - yet. The answer to that could be significant.