One of the many things people newly diagnosed with MS (PwMS) look for is information on what their illness will have in store for them.
From thinking back to when I was discovering what MS might be like, I remember an overwhelming feeling of “where on earth do I even begin?” when I finally went online. I was numb and in denial but knew I had to find out more if I wanted to create a realistic idea of it.
Approximately 5,000 people are newly diagnosed with MS each year in the UK, and for this reason, the MS Trust commissioned the “Making Sense of MS” resource to highlight the need for more information at the time of diagnosis.
In this day and age of visual and verbal communication, only a tiny fragment of those diagnosed, 12%, feel they’ve received the info they need on the day in question. This means that the vast majority are left to their own devices. When all is said and done, however, Google is still not a well-qualified, well-versed neurologist who treats you with empathy and respect. What people need so, is clear and easy to understand words explaining medical terms.
Not only is the 12% mentioned much too low, the report also said that 72% of PwMS would have been able to handle their diagnosis in a more relaxed way were they given the right information when diagnosed. A serious neurological and degenerative illness is not just a mere flu, but an illness that will influence not only ground zero but everything and everyone around them also.
The updated UK’s National Institute for Health and Care Excellence (NICE) Guideline on MS, launched in October 2014, lists that neurologists are required to provide written and verbal info at the time of diagnosis. With the new Making Sense of MS introductory booklet, neurologists at least will be able to meet this new requirement.
It’s often said that knowledge is power, and ignorance is bliss, but when faced with a future of unexpected highs and lows, medication, hospitals and whatnot, you absolutely want – if not need – insight into a complex illness. The MS Trust’s new Making Sense of MS resource was designed with that in mind.
It covers these topics:
- Your MS Team
- A short introduction to MS
- FAQ after diagnosis
- Signposts to further information
It also includes a second level core pack for those wanting to read more, with a copy of the MS Trust publications list and five new information sheets. The MSoMS resource pack will definitely help you along the way as time goes on, as getting your information solely from online pages, does pose a risk.
During my “what to look out for online when you have MS” talks, I refer to the internet as socially very valuable, but anything else that sounds too good to be true, usually IS too good to be true. People not as good as yourself might be after your money only, so be careful online.
To quote the MS Trust, “We hope that these clear and practical recommendations will enable health professionals to meet their commitments to people with MS, and patients to quickly acquire key information when they need it most.”
In the end, it’s about bridging two groups of people who will be intertwined for a long time to come, so proper communication will be vital at all stages of their life cycle.
Aside from the resources already mentioned, a new webpage Help Make Sense of MS also went live. Here you will find the results of the MS survey used in the MSoMS campaign, videos, and tips for dealing with diagnosis, Leonie’s Story and Get Involved sections. Do check them out, as you will find info every newly diagnosed person is looking for.
Spread the word about the new resource via www.mstrust.org.uk/sense or show your support by following us at @MSTrust and using the hashtag #MSsense
Written on request for MS Trust
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.