AttackMS is a trial by ProfK that offers the individual the chance to get on natalizumab rapidly after entry into the health care system with the opportunity to receive natalizumab whilst the diagnostic work-up occurs and then to either stop treatment – if the diagnosis of CIS or MS is not confirmed – or continue taking natalizumab as a first line treatment, or switch to an alternative, knowing that natalizumab is active very quickly and the second attack is more likely to be controlled. However, getting on treatment within 2 weeks is a tall order based on standard time to appointment and time to treatment.
Is this possible? Well, that is a question of the trial, but I can say this. It is not the norm…
From http://www.myplannedcare.nhs.uk, you can get the:
(a) Average waiting time for first outpatient appointment at this hospital for this specialty
(b) Average waiting time for treatment at this hospital for this specialty
This is available by regions in England, (a) North West, (b) North East & Yorkshire (c) Midlands (d) East of England (e) South East, (f) SouthWest and (g) London.
I extracted information for all NHS Trusts (NHSTs) or NHS Foundation Trusts (NHSFTs), and then looked specifically searched for Neurology. First thing to say is that many regional hospitals have no details for Neurology at all, which already shows there are marked differences in availability of neurology across England (paediatric neurology was excluded from the analysis). The search was done on 31 July 2023.
For (i) the median waiting time was 19 weeks (range 6-35 weeks).
For (ii) the median waiting time was 20 weeks (range 5-33 weeks)
Now, there are three main sites for recruitment for AttackMS in London (though you can be referred to one of them rapidly from anywhere in the UK – just tell the HCPs you are dealing with to get in touch via bartshealth.attackms@nhs.net), so what are their current routine waiting times?
Barts Health NHST (i) 17 weeks (ii) 20 weeks
St George`s University Hospitals NHSFT (i) 13 (ii) 14 weeks
Chelsea & Westminster Hospital NHSFT (i) 17 weeks (ii) 17 weeks
I predict we can do it, and it is one aim of the trial, that is can we recruit and treat within 2 weeks, and another question is: Is there repair by switching off the immune attack?
If you know anyone with a neurological event suggestive of MS get them referred to one of these three centres, or simply email bartshealth.attackms@nhs.net for an inquiry. It may be a chance to get on a highly effective treatment very, very quickly, or the team may say hey we don’t think you have CIS/MS, but you get seen within a day or two, not 13 or 17, or indeed 35 weeks later (by which time *all* participants who fulfil the criteria for AttackMS will already be on treatment since from week 12, *all* participants receive natalizumab!
Here are the waiting times of all NHSTs with Neurology specifically mentioned as an available speciality across England; make of them what you will:
It is there for all to see. Remember, this *all* Neurology appointments, not just MS. It would be nice to get a feel of the prescribing habits of different places as it speaks to equality of services and points at the odd ones out… maybe in a good way, maybe not. Transparency is what you should get. Nottingham at one end and Hampshire at the other.
CoI: I am a member of the trial management team of AttackMS. ProfK is chief investigator of the trial.
Acknowledgement: AttackMS is sponsored by Queen Mary University of London, and funded by Biogen.
Disclaimer: My views only.
@AttackMS_trial
A member of my family was living in Berlin during the early stages of the pandemic. The healthcare system there meant that he had investigations, a diagnosis was made, and he was started on treatment within 2 weeks….it’s clearly not in impossible…
ProfK can beat that….:-)
Well done your family member, and well done colleagues & friends in Berlin, the city of my alma mater.
I’ve always found this to be an admirable RQ but thought this would be a tricky study to deliver, likely only feasible to people who are admitted during their first relapse.
I receive care at one of the centres in the top 5 for referral times outlined above I suspect those numbers are heavily manipulated. It took me a year to get seen initially, 2 years to get out on treatment and 7 years to get out on high efficacy treatment. I recently got “ lost” in the system and wasn’t seen (nurse or consultant) or remotely checked for 2 years. They said I should have contacted them sooner but as my average time between my consultant led appointments is 20 months, I’m not sure how I should have known the difference.
My brother developed ms type symptoms a couple of years ago and the same hospital keeps returning the referral from GP with advice and guidance feedback. Perhaps if they saw more patients the times might be less rosey. This hospital is frequently in the press facing litigation and the whole systems seems to be a shambles in severe need of major investment.
You know this story isn’t unique and I’m sure all the comments here will be the same. The problem is a political one, but says something about the leadership amongst institutions such as the ABN who seem unable to advocate for their patients and the resources they need.
Best of luck with the study
Thanks BT, I agree we’re trying to run here before being able to walk, but we hope the MRI/repair evidence will help invoke real change. There are rapid pathways for cancer (https://www.nice.org.uk/guidance/ng12/chapter/terms-used-in-this-guideline#suspected-cancer-pathway-referral) and rheumatoid arthritis (https://www.nice.org.uk/about/what-we-do/into-practice/measuring-the-use-of-nice-guidance/impact-of-our-guidance/nice-impact-arthritis/diagnosis-and-referral-of-inflammatory-arthritis); our goal is to ultimately achieve something similar for people with (suspected) MS. We don’t need a trial to establish the waiting times you have experienced are not acceptable. However, evidence of better repair within two weeks (compared to 12 weeks, that is when all participants will be on drug), would boost the chances of MS becoming a disease that is responded to with rather more urgency across the board.
“Likely only feasible to people who are admitted during their first relapse”.
A relapse is by definition a second attack…ProfK is after the first one
I echo an earlier comment. Time to see a neurologist mirrors the reported data ( 17 weeks). Time after confirmed MS diagnosis to initiate treatment 13 months, time from first clinical attack (ON) to initiate treatment 2 years and 4 months and that is with me pushing and prior to Covid and in a regional ms treatment centre. Hopefully people who do get on this trial have a good outcome, but, I believe improvement is needed regardless. As others have said on historical posts with similar subjects , you would probably be dead with lead in times like this in cancer. In our illness early damage manifests itself later, but that doesn’t mean it’s less serious, we just end up with more years of suffering.
So much for the time matters aspiration. What was disturbing are the number of private hospitals in the list , I suspect a lot of them specialise.in surgery….roll them in them whack the bit out and get the wodge from NHS direct and give some wedge to the MP board member who privatised this by the back door.
When ProfK tweeted the info Dr Justin Bieber tweeted what a terrible.response time it was…ok I may have spelt name of MS.social media doc wrong