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

One of the advisory board Is Helen Dawes
Helen Dawes is Professor of Clinical Rehabilitation in the College of Medicine and Health. Helen has a clinical academic background as a physiotherapist and exercise scientist with an ambition to enable people living with conditions affecting their movement to be able to move more.
Click to expand...
https://experts.exeter.ac.uk/38045-helen-dawes

She created report based on MEAs “count ME in” project.

Earlier diagnosis and better care needed for ME and Long COVID patients, report finds - News
https://news.exeter.ac.uk/faculty-o...-for-me-and-long-covid-patients-report-finds/


The University of Exeter has created an independent report published in BMJ Open based on the findings from a 2023 survey conducted by the ME Association called Count ME In. Completed by more than 10,000 people, respondents reported significant delays in the diagnosis of ME and Long COVID, low satisfaction in specialist services, and a need for improved self-management resources and better-coordinated care.

Many participants also reported dissatisfaction with NHS experiences, with only 6.9 per cent of those with ME and 14.4 per cent of those with Long COVID rating their experience as good-to-excellent. Many of those said they faced significant delays in diagnosis, with some diagnosed after more than 10 years, and the majority (70 per cent) reported moderate-to-severe impacts on their lifestyles which required substantial changes to their daily activities.

Professor Helen Dawes from the University of Exeter Medical School said: “We see parallels between the experiences of ME and Long COVID patients, and our report indicates a need for improved support and timely diagnosis of these conditions, as well as education for health professionals. It’s important that patients with ME and Long COVID have access to a range of specialist services and self-management strategies to enhance their care. Considering the pressure on the NHS, digital health solutions may also offer new opportunities to support earlier diagnosis, empower patients in managing their conditions, and improve access to care.”
Click to expand...
 
Last edited:
MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android

Wednesday, July 2 · 1 - 3pm GMT+1
Location
Online


About this event
  • Event lasts 2 hours
This webinar is brought to you by ME Association and ELAROS 24/7 LTD and is aimed at clinicians, academics and service providers working in the fields of ME/CFS, Long Covid, and other long-term condition services
Click to expand...

In the absence of approved and effective treatments for either condition, management is the main tool we have to work towards a stabilising of symptom frequency and severity and an improvement in an individual’s life quality. It is essential that affected individuals are referred to a multi-disciplinary specialist team who can confirm a diagnosis, provide tailored care and support based on need, and advise on the tools necessary to manage health effectively.
Click to expand...


Our speakers:


ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.


The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.
Click to expand...

Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.
Click to expand...
 
Considering the pressure on the NHS, digital health solutions may also offer new opportunities to support earlier diagnosis, empower patients in managing their conditions, and improve access to care
Click to expand...

Hmm. So other people continue to get access to NHS services, under pressure as they are, and we get fobbed off with useless apps?
 
Oh wow this is big news.

Thisnisnt much of a comment, just trying to attract attention to the above. So the app and PROMs are all tied together, and with the MEA “we’re not recommending it” ok but you do seem to be funding it…
 
Cinders66 said:
It's background about elaros who afaiu are behind the app. If it's of no interest or irrelevant please delete
Click to expand...
Sorry, I didn't mean to suggest it is of no interest, just asking whether it's the same product being discussed. The Elaros seminar is definitely of interest and very concerning.

I am so disappointed to hear that Tyson and the MEA are still working on their PROMs and guide for clinics and are working with BACME too. What on earth is going on here.
 
However I see the event also includes

"Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years."

So perhaps it warrants its own thread as it encompasses a mixed bad of topics?
 
Kiristar said:
"Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years."
Click to expand...

I got briefly involved in the Suffolk plans but don't know where things go to. @Suffolkres will know.
 
I'm massively confused here... so the NHS & DWP are developing an app to do (in DWP case) some nefarious thing under the guise of 'assisting' people like us. And ELAROS are the app developers, who're walking hand in hand with MEA & their PROMs project in order to do it???

Is that whats happening I cant understand it
 
You must log in or register to reply here.
Back
Top Bottom