Happy MS Awareness Week one and all! In this video I focus on the invisible and hidden symptoms that MSers experience, in the hope of spreading awareness of these unknown and misunderstood but disabling parts of MS.
I’d be so happy if you’d share this video with your friends, family and kindly strangers so that we can get word out and enable others to get a better understanding of the MS world.
I refer to some MS Awareness campaigns at the start of this video, which can be found here:
MS Trust’s MS Awareness Week campaigns
1,857 were surveyed by the MS Trust in Feb and March 2016. For people with progressive MS, only 55% had seen a neurologist in the past year, only 60% had seen an MS nurse, and even more worryingly, 12 per cent of people with progressive MS hadn’t seen any kind of specialist health professional in the last year. This falls a long way short of NICE’s MS Quality Standard, which recommends that all adults with MS are offered a comprehensive review at least once a year by a specialist health professional.
Make Welfare Make Sense campaign and report
The report, which surveyed 1,780 people with MS in 2015, is a scary read. 42% of those who had a Personal Independence Payment (PIP) face-to-face assessment disagreed that the assessor considered their hidden symptoms and 50% of those who had a Work Capability Assessment (WCA) for Employment and Support Allowance (ESA) disagreed that hidden symptoms were considered.
MS Society Ambassador Trishna Bharadia will be posting videos and blogs all week here: https://www.facebook.com/trishnabharadia2015/
The campaign aims to encourage people with MS to ensure they are fully informed about new MS drugs, lifestyle interventions and services. 97%of MS nurses and neurologists believe there are people who could benefit from reconsidering how they manage their disease in light of how the MS landscape has evolved.
I also refer to the The Spoon Theory by Christine Miserandino to explain chronic fatigue.
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9 thoughts on “MS Awareness Week 2016 – A Video Blog”
Thankyou Many Lemons for raising awareness of invisible symptoms- love this post!
Thank you DJS!
Thank you, you’ve got the description spot on of how invisible MS symptoms affect me every day. I will definitely share it, I’d love people to understand a bit more about how I’m feeling, even when I look ‘fine’! x
I’m so glad you think it is a good reflection of what so many of us endure Angela, I hope others can get a good glimpse into our days and understand us better 🙂
Thank you for making this video. I appreciate how much energy you must have used to do this. I will share this as my friend is a training as an adult nurse with the aim of specialising inMS. She is a great advocate for your cause- as I will be too.
That would be wonderful Louise, thank you so much for your and your friend’s support and advocacy for awareness. I wish your friend all the best in her training, and it’s lovely to hear of another MS nurse in the pipeline! Best Wishes.
Thank you for raising awareness about invisible symptoms, MS Trust and MS Society. Your blog is so true, on the outside I look like everyone else but on the inside they don’t know how much i struggle with life?
It is so true the MS sufferers are left alone if they are progressive and this is so unfair. There is new treatments out there all the time.
You can get a referral by your GP to your local Hospital so then you can have access to a MS Consultant and MS nurses.
What you write Dr Hopper is so true and I am so pleased that you are opening some people’s eyes about MS.
I will tell other sufferers about your blog and I want to share because it is a true understanding of what we go through daily.
Thank you again and I look forward to your next blog.
I have MS and have been diagnosed for 20 years since the birth of my daughter. I can’t talk about it at all I need to talk, is there anybody else who can talk to me?
Hi Sarah, yes there most definitely is! There’s a variety of different ways you can talk to someone. If you like to use online forums, there are plenty such as shift.ms, the MS Society’s forums, as well as groups on Facebook. It’s worth double-checking with the admins of the Facebook group that you are interested in, but generally speaking, these groups are set up so that anything you post on there is not seen by anyone outside of that group i.e. it won’t appear in your newsfeed. A few examples: Women with MS; MS & Work; groups specific to patients on a Disease Modifying Drug. Then there’s via the phone – first port of call is definitely the MS Society’s helpline, and they can signpost you to other people too as well as profesional services. Finally, there are meet-ups for MSers in some areas. You can find them by asking your local MS Society if they know of any and asking on forums. Shift.ms are actually campaigning to get funding to get their MS map on the go https://shift.ms/map. I wish you all the best in finding your community.
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