The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

I hope someone can publicly ask an MEA representative why they are assisting a 'solution' for ME/CFS and Long Covid that categorises these conditions alongside 'Mental Health'* requiring a 'therapy-led'** approach.

* as described by the app developers
** according to the MEA's Facebook post about the app.

Of course we can speculate about why, but it would be interesting for them to have to come out and publicly say it.
 
MrMagoo said:
I wonder what it costs?
And how the cost compares to Visible*

*I know not everyone is a fan of Visible but at least it’s based on some science and uses FUNCAP. It’s not likely to cause damage, or harm. If the NHS said they were offering one or the other, and neither isn’t an option, Visible is better than Elaros or Nothing. They sell visible about £60 for a heart rate band and £15 per month, so £240 fora year, retail.
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Based on serverely affected Service Users request and personal experiences a limited number of licences was costed, allowance made and Visible incorporated into our service model.
 
I'm attempting to explore the app in more detail and will make some notes here. Since the app is on my phone and I'm typing this on my laptop I can't copy slabs of text, so this will be sketchy. Wish me luck. I hate feeling I have to do this, but someone's got to tell them about the problems with it.

The home page has a series of sections to select:

My tasks, add task.

Help at Work

Symptom specific resources

Financial resources

Advice for managers or employers

Videos

Advice for friends, family or carers

Condition overview

Provide your feedback

Day streak

Feedback form

Youir trends

Community
____________________

Taking these one by one:

My tasks: I tried adding steps and resting heart rate as tasks and selected daily. This created 2 more items to the list on the home page, but when I tapped on them nothing happened.
____________

Help at work:
Has a series of articles copied from or provided by other sources. Apart from one provided by an FM association, they seem to be all generic guides for anyone needing workplace adjustments, home working, short and long term absences, redundancy rights.
And there's one called IGLOo guide for employees which is specifically for people returning to work after a period of absence with a mental ill health, with lots about depression, anxiety, stress. And a list of further resources on mental health and work. So totally inappropriate for an LC, FM and ME/CFS guide.
___________________

Financial Resources
Financial wellbeing advice is focused on a link between financial difficulty and mental ill health. And stuff about stigma and the need to get financial advice. Nothing conditions specific in that section.
Lots of stuff copied from other bodies about sickness pay, redundancies etc not condition specific. Includes the access to work scheme, PIP and other benefits.
An MEA booklet on their disablity rating scale and the suggestion it can be used to inform medical and benefit discussions and to monitor progress.
An MEA guide to PIP and ESA and UC applications.
_____________________

Advice for Managers or employers
Igloo guide for line managers or employers and Occupational health at work don't see to have any resources yet

Employers guide - Working with fibromyalgia is provided by the FM association. I haven't read it.

Disablity discriminatlon in the workplace: Generic documents about employers' obligations, and about direct and indirect discrimination, harassment etc.

Healthy home working, an overview for managers:
about the health and safety act, and about the challenges for managers of people working from home. Things to consider includes stuff about ergonomics of home office and advice for the person working from home to take 5 to 10 minute breaks every hour and 'mobilise about the home' Section on resilience includes encourage employees to keep to a schedule and more frequent contact with them. So while there is mention of reasonable adjustments and OH referral, the focus is on keeping them working efficiently and resiliently. Some links given to various sources including one called Cordell health that focuses on getting disabled people able to continue working.
_____________________



More to follow.
 
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Thanks Trish.
I’ve looked at IGLOO and it’s just an initiative about return to work, what the Individual, their colleagues Group, their manager Leader and the Organisation should all be doing.

Like many of these, good luck to any Individual assuming their G, L and O will be at all interested in helping.

So far the app sounds full of absolute generic rubbish which exists mid way through a Google search. Who needs to be reading about indirect discrimination unless you think you’re being discriminated against.
We can all find ACAS, we don’t need to gen up on the law and stride back to the office thrusting it triumphantly under everyone’s nose. Financial advice? Start saving, there’s very little assistance.

Looking forward to when you find the part on pacing….not.
 
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Trish said:
I'm typing this on my laptop I can't copy slabs of text
Click to expand...

Thanks for looking into this Trish

You can take screenshots (and rolling screenshot for long pages) of apps on your phone and use Google lens in Google photos to copy text to paste to another document or a post here.

I also use voice typing on my phone and laptop.

Hope this helps
 
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