If you are a jobbing MS Health Care Professional, i.e. on the coalface of MS care, then the annual MS Trust conference is the place to be. The range of topics, talks and issues that will be discussed in a pragmatic and clinically relevant way make this the one meeting to attend this year (28th Feb to 2nd March 2021). Please click on the link to register.
Due to COVID-19, the 2020 meeting was cancelled and this year’s meeting is going online. This will allow you to attend from the comfort of your office or home and will allow you to dip into the content remotely in your own time.
CoI: I am biased as I am talking at the meeting. I have always felt the MS Trust Annual Conference, which is the only UK conference dedicated entirely to MS and its management, that all MS HCPs should attend. Sadly, too few neurologists do; if neurologists did attend I think MS services in the UK would be in a much better place.
What can the HCP who specialises in MS, plus also has MS themself bring to the table? I know there are a few of these. Insider knowledge and experience, yes but what else? It would be good to discuss this, even in a confidential way.
Why not open to the conference to all-comers; including people whoo have MS are not HCPs? We live in an era when knowledge is democratised so not allowing people from the wider MS community to attend is against my principles.
Yes good idea. Conferences funded even partly by pharma wouldn’t allow it though.
Perhaps adding a separate day or half day, at the start, mid or end of a conference, that could be opened to include pwMS too? This day or half day would be non pharma funded. Mid conference would be good.
Are MS Society meetings open
What about having an MS Hackathon? I’ve been part of an NHS Hackathon day before. It was about fairly urgent service improvement for an NHS trust. Service users, clinicians, carers, outside agency and charity staff attended. Creative problem solving. I was quite impressed with how it worked.
I agree Prof G. Ever since my wife got diagnosed, I have gotten MS listerate (things to this blog, was definitely thought us how to ask the right questions). Knowledge has been the main way we have dealt with the diagnosis and we were bummed that we could not attend the “Virtual” ectrims this year.
Looking forward to the virtual Disco (Fancy dress theme – Best Dressed) 🙂
The HAART trial in the USA that will begin the year how long will the trial last 6 months, 12 months, 24 months ?
Hi Prof G and all,
I’m with Prof G with regards patient involvement. Just to use as an example – groups of patients/HCPs can help with understanding how MS is impacting, evolving and most importantly of all – help with communication and awareness that, not everything is as the ‘rule book’ says! ‘Time’ is always an issue for both Dr and Patient. The best way to use this crucial ‘time’ is to try and listen, engage and understand from the patient and vice-versa. Most patients feel under pressure, frustrated and sometimes exhausted by their condition and travelling to the appointment. To help support this and try and engage with people who, for various reasons may not use their appointment time to get across, their thoughts and concerns, can only benefit both parties.
To have access to Drs and understand more (learning too about new things) – that can only be a benefit for everyone. As ‘old fashioned’ barriers, snobbery and just because we’ve done it this way for years – certainly should not be how we move forward in the 21st Century. Most of us want to learn more and more about our condition – which helps manage, understand and communicate our findings to our friends and families. Of course, you’ll have difficulties with ‘time’ and lectures/presentations may be more suited to the more academic patient – but please do understand, that if you have a patient that wants to engage and understand, do not put them off without fighting their corner and ensure that access is allowed and to hear our voices.
I’m grateful to be able to read and keep up to date with all things to do with MS – as has helped me more than you might realise, especially in the pandemic. Empathy, respect and friendliness – can help a patient, even if you’re in chronic pain all day and everyday – as it makes that person fill human and can ensure that they turn up for the next appointment and help themselves with caring for themselves or their partner.
Keep up the good work – and I know first hand, as I’ve been into hospital twice in the last 7 weeks, how extremely brilliant and busy you all are. I know there’s lots of changes and multi-disciplinary teams needed. I needed two procedures if I hadn’t asked, gotten on so well with my Urology & Gynae team over the telephone, I would have had to come to hospital twice. With great help from my Uro’s secretary & the thumbs up from the other team – myself and the Uro’s sec organised for them to be carried out at the same time! I was delighted – but it took, relationship, understanding and for ME the patient to suggest it and help get it carried out, of course, not taking away any credit from the surgeons and teams, of course.
All the best,
Jane