36 Comments
Nov 29, 2021Liked by Gavin Giovannoni

I consider the fable of the child rescuing starfish. When told that there is no way she can rescue all the starfish on the beach, she says, "Yes, but it means the world to this one" as she tosses one back into the sea. No, not all people with MS will be able to access a self-management course online, but those who can will likely benefit greatly.

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Nov 29, 2021Liked by Gavin Giovannoni

I think your proposals are laudable but we’re living in an era of profound household economic challenge - considering Maslow’s hierarchy of needs , many families would derive greater benefit from higher wages & state benefits, better quality housing, better quality food, clothing not from a charity. Those forced to depend on food banks are going to find it hard not to sell a free computer, out of desperation.

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Nov 29, 2021Liked by Gavin Giovannoni

Go for it, but don’t abandon the MS selfie. Thanks for all the invaluable information over the years. My doctors are not up to speed and I rely on your information.

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Nov 29, 2021Liked by Gavin Giovannoni

Hello Gavin

Regarding Digital Inclusion...

I've had some involvement with the DI sector. It's a whole industry and it all revolves around who pays. Understandably, its application has exploded during Lockdown. Businesses such as Housing Associations and Banks engage DI companies to role out IT expertise and/or equipment so that customers can use their accounts online, so they can justify investment by receiving rent or fees from people to whom they are providing a service. Easy! Government have used DI companies for many things including to ensure schoolkids have computers & broadband to enable them to access schooling remotely.

Rather than reinvent the wheel all on your own, I would recommend you hook up with established MS Charities and push for DI funding for your proposed platform. Almost by definition, pwMS have issues reaching or communicating with the world at large. Those without the means or expertise to get online and to reach the services that would benefit them should be helped to get that access. Many pwMS are housebound, so some provision for remote care must be in place.

Then comes the bit that's like walking through treacle. Whose budget? Education? Health? Which Dept? Neurology, or perhaps OH? Local or Central? Frankly, as a leading Health Practitioner in your field, and someone with an aptitude to reaching out to patients across a new medium, concentrate on the low-hanging fruit: those with funds and access to the right technology. Prove the concept, develop a first-class product and those who want to democratise the product will come to YOU. Ignore politely the armchair socialists for the time being, concentrate on product and don't give it away for free.

Finally, don't duplicate what is already in place from the likes of MSS & MST. Do it better and they might back you and use you as a lever to get funding - for you and for themselves. It's a cynical, self-serving world...

Talk to me, use me if you think I can help. Thanks to this disease I'm stuck at home with an under-utilised brain and a lifetime of business development experience!

Graeme

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Nov 29, 2021Liked by Gavin Giovannoni

I agree with you and I think that a very personable tailored approach to PwMS must be applied! Regarding ageing person it's very important not to stress them providing smooth and gentle advice, make them feeling comfortable and confident

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Nov 29, 2021Liked by Gavin Giovannoni

tremors for me...need software that helps use stuff...need help

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founding
Nov 29, 2021Liked by Gavin Giovannoni

As long as you do not take existing options away from people while you add new ones, this is strictly a good idea (what economists would call a pareto improvement).

It gets more tricky when we consider redistribution of resources but even then, unless you are Rawlsian (which like *all* known ethical frameworks, has issues, maybe more than many others, even), it may well be defensible.

Unless you propose to spend huge amounts of resources, I'd say go for it. It might well free up resources for the people that cannot access it!

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Nov 29, 2021Liked by Gavin Giovannoni

I have just completed your online survey Prof. and would like to volunteer myself as an unpaid member of a focus group, proof reader, bog cleaner & bottle-washer. Anything really.

Stanley Jackson

0778 606 4018

Stanley@agrumi.co.uk

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Nov 29, 2021Liked by Gavin Giovannoni

PLEASE GO ON WITH YOUR INITIATIVES BECAUSE I LIKE AND NEED IT AS A MS PATIANT , ALBERT F.

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Nov 29, 2021Liked by Gavin Giovannoni

In addition I am onboard and forward this to my inner circle, including us, MS Warriors, friends and colleagues. Many thanks pr. G!

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Nov 30, 2021Liked by Gavin Giovannoni

Hello Doctor (if you get to see this?)- I had some brief moments to contemplate about your question for a Course on MS for the average MS’r. The idea initially struck me as good, but your discussion raised many issues about what a course would look like and the obstacles of such. Here’s my current brief thinking- The word “course” puts the wrong flavor to it, in my opinion. Someone newly diagnosed doesn’t want a “course”, but they might want answers. What’s the bottom line (in my opinion)?

What is truly needed is for new or potentially new MSr’s, and then all the rest, to A: be informed of what is going on with them, AND, B: they need to make a plan, given their understanding of A. That’s really about it. For the newbies, that is a lot of work and understanding, but it is so, so needed. Not all will be able to handle it, so those won’t want it, “yet”. Nevertheless, it needs to be there for when they are ready. Adaptations can subsequently be made for disabled and elderly people, etc. An essay, submitted to expert(s), about “This is my plan for dealing with my MS, now”, would be wonderful, but such would require a lot of work by somebody (s) (?). Or just posting one’s plan and getting feedback (?). Just the reading of other's plans & feedback would be eye opening. A prerequisite to that might be digital multiple choice “testing” of understandings for each of your question areas (make it real). But very, very important; the whole thing, I think.

People who stumble into this disease need to know from the start what they could be in for, and plan for it. MS is more than two infusions a year, thinking you are cured, and then wearing an MS T-shirt. MS is the realization that the two infusions a year is not the end of one’s story. The evidence for this is all over the place. Would have been nice to have known that from the getgo. My opinion. Good Day.

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Nov 30, 2021Liked by Gavin Giovannoni

I think it is exactly that 'elitist, ageist and discriminatory and you're asking your champagne socialists to fill in your survey and like one of your readers said if the government provided a free laptop I would be forced to sell it I have to buy my fags and alcohol somehow, not to mention the 3 bit bull terriers I have to feed Ha-ha

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Nov 29, 2021Liked by Gavin Giovannoni

Frankly the criticism doesn’t hold much merit. If they are so concerned then consider offering a mail-in paper course (small fee to cover that), or making the resources readily printable from online in addition to being online. Then MSers can have anyone print it for them and take it anywhere to get permitted. Also be sure to have alt text for images and descriptions of images for the vision impaired. Then they have nothing to belly ache about. This is a fantastic idea, anyone disagreeing with that is being petty or part of the problem rather than part of the solution; this part of the solution would suggest improvements in how to make it widely accessible, instead of attempting to stop it altogether. As an education technologist in healthcare, people afraid of change and technological futures are being terribly unrealistic. Probably, the criticism stems from those who don’t want to be called ok it when they aren’t doing an adequate job, those people will always resist accountability.

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Nov 29, 2021Liked by Gavin Giovannoni

I agree motivation/confidence is a big factor and one of the few good things bout Covid is it encouraged some people to learn zoom etc.

But I also agree that digital exclusion is still alive & kicking - sometimes due to location/signal, sometimes due to moving a lot or not having good enough credit history to get internet account, some types of disability or cognitive problems etc. So it is good to be aware of the exclusion risk of something that is on-line only.

Also some things do not work as well using mobile phones as a full sized computer/tablet screen

But it would be pointless to not offer on-line support just because a minority can't access it.

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Nov 29, 2021Liked by Gavin Giovannoni

Visiting the Yorkshire Dales in August I met a man at the bus stop in Oxenholme. He assured me that I was in the right place for the bus to Sedbergh. He was on his way back from Preston where he had been using the library computer. You get an hour, he said, but at least 20 minutes of that was spent trying and waiting to log in. Then back on the train in time for the last bus home (at around 1pm). He couldn't drive any more due to worsening arthritis in his knee. He had been on a waiting list for a new hip for over a decade. Incidentally, his mother had had MS and very badly.

I mention him because he is one of he more extreme cases. From a remote rural place, working class ("I drove a wagon"), without a smartphone.

I live in London and work in the public sector with a lot of older people - all social housing tenants or leaseholders, including some in sheltered housing for those with disabilities. So this gives me a good sample size. Some have embraced technology with open arms, some (including one I'm just back from meeting) try their best and know where to ask for help if they need it. Some have a lot less confidence or willingness to learn. Some are even quite young, but haven't ever needed to use a computer and in their 50s and 60s aren't keen to start.

All can access free wifi quite easily and I would actually give many of them free equipment if they wanted it. Getting this is not actually difficult - it's easy to get a cheap or free secondhand smartphone at the very least. The problem I see is almost exclusively one of motivation. I can remove every single barrier but that one remains. I tear my hair out sometimes because I can see how much benefit they would derive from having access to the internet and knowing what to do with it!

If people are disabled by or with MS I think it's even more important for them to be online as the risk of isolation is so great.

(coincidentally, my 73 year-old mother now has a job in a public library in New Zealand where she lives. She currently spends her days helping older people get online to download and print their now-compulsory Covid passes - so that's provided some motivation that wasn't there before!)

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Hello,

Not so long ago before the portable laptop arrived on the scene there were internet cafes which sold terrible coffee. Gradually the standard of coffee improved and many people then bought a laptop and 4G phones arrived on the scene. I am sure a way could be found to bring these two ideas back together again.

The post office is another venue where the internet could be made more available as well as the public library.

I am thinking of ways to combine modern technology with existing ideas and generate more traffic for the High Street. Sadly there is one proviso, the playing field will never be completely level.

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