Barts-MS rose-tinted-odometer: ★★★
Black and Gray Hurricane Friday, #000000 #d3d3d3
I was kindly invited by David Martin the CEO of the MS Trust to participate in a Parliamentary round table meeting on Multiple Sclerosis on Tuesday. The meeting was chaired by Helen Hayes MP, who impressed me immensely and reassured me that the Labour party has some serious talent and committed MPs on the backbenches.
The meeting highlighted the massive task ahead of us post-COVID in relation to MS services. COVID-19 has turned the perfect storm the MS community was facing before the pandemic into a category 5 hurricane. I am not sure if you are aware that during the pandemic there has been an approximately 30% reduction in patients with MS starting disease-modifying therapies (DMTs). Where are all these new patients? I suspect waiting to be referred into the service or stuck in diagnostic pathways.
In addition, to new patients waiting to be diagnosed there are patients with PPMS and SPMS waiting for MRI scans to assess if they have active progressive MS in the hope of starting ocrelizumab or siponimod. Add this to reduced MRI capacity, a reduction in neuro-rehab resources, a rising incidence of MS, an ageing workforce with many early retirements, BREXIT, reconfiguration of the NHS and rising expectations from a more informed MS patient population and you begin to realise the task at hand.
Having thought a lot about Tuesday’s meeting I think we need to get the MS Community together to reflect on what has happened over the last 18 months and formulate a plan for what the management of MS is going to look like after the pandemic.
COVID-19 has changed my MS practice for the better and for the worse. What can we learn from our experiences, what should we ditch, what should we improve on and what practices can we take forward into the future? I think we have an opportunity to radically change the MS service model.
If you have any experiences and/or ideas for diagnosing and managing MS in the future please share them with us.
I am asking my colleague Dr Wallace Brownlee, who has taken over from me as director of the MS Academy if he can host a meeting to discuss these issues and what our response should be in the wake of the pandemic. Why the MS Academy? It is an inclusive umbrella organisation that represents many different MS stakeholders, which makes it an ideal platform to bring the relevant people together.
Let’s think, let’s reflect, let’s meet face-2-face, let’s share our experiences and let’s formulate a plan together.
MS-RT-AgendaMS-Selfie Newsletter / MS-Selfie Microsite
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
So, what’s to be done? You suggest face-to-face meetings. Participants should represent the MS community as well as medics. Maybe politicians too, but there’s not enough resolve from the current government. Yesterday, someone doubted 23 ambulances outside the only general hospital in my county. Ambulance crews cannot hand over patients and respond to new calls. The Secretary of State insists there is no problem down here. It’s one example of how blind the government elects to be about the problems the NHS is facing.
Dr Rashid moved from BSUH NHS Trust several years ago, (Trust is now named University Hospitals Sussex NHS Trust.
Thanks for doing this – yes the MS community would benefit from coming together for a number of reasons including this topic. Transport/travelling can be such a hindrance for PwMS it would be really helpful to include some element of remote/virtual participation.
I wonder if the MS community, i.e MS Trust, MS Society and others are doing enough to highlight/inform new HCP’s and students becoming HCP’S about MS and the career paths/specialisms in this area?
Perhaps for the MS Academy to attend and have a stall at university healthcare courses open days or other fairs, etc if permitted.
I know the MS Academy have offered subsidised training days for HCP’s and knowing these funded opportunities are
available, as a healthcare student it does encourage healthcare students and HCP’S to take an interest in MS.
I think there should be much more joined up thinking in relation to MS
There are too many societies MS centres working in splendid isolation with no joined up thinking funding etc between them
One thing I have had reinforced to me in the last 7 months: something I didn’t give much credence to before, is the entire patient-to-patient support piece.
I started theMSguide.com pretty blind and am still finding my feet. However, what is really resonating is the entire patient-to-patient piece.
pwMS want to hear from and be supported by other pwMS who they know ‘get it’ in a way that no one without MS can do. Sure, you can be highly educated, extremely empathetic and caring but until you have had a crippling bout of, say, fatigue or spasticity etc then you are perceived as not being able to fully ‘get it’.
For 28y I (and every other pwMS) feels like we have been going down the road of our lives with a loaded and cocked pistol to our head. You simply never know when the bump is enough that it gets discharged. I am not blase about it but I am habituated to it. When one is newly diagnosed then I think the analogy of moving to the Kingdom Of The Sick is very apt.
And there you stay, never to be healed and sent on your way. On the periphery or bang in the middle all the time; you will henceforth exist in a different world to most.
What I am saying is that as things unfold and new strategies are shaped I think there is a place for facilitating patient to patient support. Not mediated by medics or charities but just there, away from the myriad ‘helpful’ external parties. Not a replacement for anything but an adjunct.
Many pwMS want to help others like them because we ‘get it’. Just my two penn’orth!
Re: Dominic’s point about patient to patient support
I really hope this can develop- particularly in the lifestyle and self management area. A possible route between arrogant dinosaurs on one side and snake oil merchants on the other (?)
I’m in the US but I’m vey interested in sharing ideas and providing standard care to MS patients every where
I haven’t seen any difference during the pandemic – I had no specialist support before. I really needed neuro physio support after HSCT and have had to pay for it privately, but can’t afford much because I can’t work. A friend in Australia had HSCT at the same time a me. She had intensive physio rehab immediately and it has been ongoing in the intervening 4+ years. Both edss 6.5 before, me aged 50, her 60. Result is my edss is unchanged, hers is 3-3.5
Spasticity…is the problem with ms and stroke…it’s hard to improve
post hsct unless the spasticity/abnormal tone has decreased…but
weight bearing on the affected leg/arm helps to decrease it.
Watch everything on spasticity inhere.
https://www.youtube.com/channel/UCVLi3JmSusOe45zJxZw0E9w
This series can really help you…
Pheonix Hi, have you looked into the website for Apps recommend by the NHS, for patients and carers for neuro physio rehabilitation? Called My Therapy, it was created by NHS physio and neuro physio NHS staff.
MyTherappy is the website name, they have apps for MS patients.
I agree with Dominic because many patients have learned to their cost that they are not on the best treatment. It ought to be taken as read that what the consultant says is correct but as Dominic and I and many others know, MS outcomes over a lifetime have a lot to do with the mindset of the neurologist. That, plus the postcode lottery that will determine if you can get physio or that the nurse will keep proper contact etc etc. And it’s likely only the patients who are confident enough to speak out and challenge who can pay for private physio and second opinions. Perhaps we should have a ‘bill of rights’ put in our hands at .the point of diagnosis. Postcode lotteries won’t disappear but there’s surely hope of shifting that mindset – of all the issues, it’s probably the one with fewest cost implications.
Love that you are talking and forming a plan – let’s now make it happen – to quote a famous person “it’s really irritating when they talk, but they don’t do” ……….
“patients with PPMS and SPMS waiting for MRI scans to assess if they have active progressive MS in the hope of starting ocrelizumab or siponimod.”
They should be getting hsct if they have active disease…but they have to travel to mexico or russia for it.
So many from u.k. have gone to mexico there is no room for more pins on their world map…the whole u.k.
is covered with pins.
Prof G what a brilliant idea 👏👏. With all the funding constraints facing the NHS and the current political climate, this is the only way forward.
I am alarmed by the number of young people here in Devon newly diagnosed with MS and the number of people with SPMS I encounter. It makes me very aware of the high caseloads for Consultants and MS Nurses. It also worries me how little information both existing and newly diagnosed PWMS have, about treatment options, lifestyle choices.
When this goes ahead will it be announced here? Big thankyou for supporting and empowering the MS Community. I suspect a lot of the contributors to MS Selfie write their contributions in their ‘ free time’ and I would like to thank each and every one of you for such dedication.
I have had my worst experience ever with my ms team this summer. From confrontational ms nurses who don’t know how to listen, to ms consultants not believing I was experiencing a relapse (finally an mri confirmed I was) to more than one actual lie being made on my medical notes by more than one hcp – I could go on, but would prefer not to. I actually ended up at my local A&E (waiting time 16 hours) desperately asking for help as I couldn’t get it from my “centre of excellence” neurology hospital. I’ve rarely had to contact them over the last decade so if one of them had taken the care to see this, surely this episode of my desperately trying to get help should have indicated to them that something was going on. Oh yes – also on my notes is the suggestion that all symptoms could be down to my age (53 Yr old female) – how extremely hurtful & insulting.
I can’t speak for other ms teams, but in my experience the whole system needs overhauling to bring it more in line with oncology, haemotology departments.
I completely appreciate that the NHS is under strain, but if a nurse or doctor is unable to actually take the time to listen to a patient & give just an ounce of compassion when dealing with someone who is ill, then they are in the wrong job.
I deal with the public in my day job, believe that I can communicate clearly & succinctly & do not feel I am neurotic in any way. I feel extremely sorry for others who are newly diagnosed or get nervous when dealing with health professionals.
My MS team took my down one very drawn out & unpleasant road this summer, which I am still dealing with. I am sure they could have taken me on a better route.
Ask your GP for a referral for a second opinion.That’s how I came to Barts and got immediate attention. (And discovered this blog!)
As someone thinking of relocating to Devon I find this a bit worrying…is this happening in the big centres ie the cities? Thank you
Hi Bluebird.
My ms team is based in a “centre of excellence for neurology & neurosurgery” hospital, within a large city.
I’m always surprised, and sceptical, that the hospital is rated as outstanding by the CQC.
Good luck with relocating to a beautiful part of the world.
Thank you 🙂