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

[Trish]

This started well before the current government.

 

[Suffolkres]

I second the value of an app tracking symptoms, and that includes passively (heart, sleep) as well as optional personal recordings of symptoms, activities, FUNCAP.

These apps will be cheaper than running a service so they’re a shoo-in. Digital NHS cutting edge ways to keep patients at bay and record how well it works (PROMs) this will go ahead mark my words.

We have a misunderstood illness with no treatment - nobody in power cares if we get better or not.

Latest blog from the ICB's medical director Dr Frankie Swords - NHS Suffolk and North East Essex ICB

https://share.google/LJfjY872H76C25qNJ
A New 10-Year Vision for the NHS

On 3rd July, the Government published the long-awaited NHS Long Term Plan. It’s a bold and necessary step forward, shaped by input from the public, patients, NHS staff and partners. I’m especially pleased to see a clear emphasis on the Government’s “three shifts”:

• From hospital to community – making it easier for people to get the care they need closer to home, including mental health, dental and GP access.
• From analogue to digital – embracing technology to deliver joined-up care and enable patients to access services in smarter, simpler ways.
• From sickness to prevention – helping people stay well, with targeted efforts around weight loss, child health, and home testing.

 

[Suffolkres]

I have gone back to the beginning of this thread....

It seems our worst fears and our apprehensions about direction of travel were completely justified.

MEA BAcME Eleros and our local Norfolk group lead who is imposing his views on our patients and SA's.....

FYI. G who is “NorfolkwaveneylongcovidgroupNW” on Facebook wrote the below.

“I am and have been an avid supporter of ELAROS and collaborate with Roman personally and with Jennifer and others on their team. Ditto with Russell Fleming of the MEA.

One very big issue for me and ELAROS and possibly the MEA is Norfolk & Norwich NHS Trust is one of those Trusts and ICB’s that have not agreed to use ELAROS and my limited attempts to provide an introduction both ways has been unsuccessful.

I don’t think CSS use them either, but clearly SNEE do,(no they don't) as the merger will prove beneficial to those ME-CFS patients from within ECCH who will be affected by the new merger of the Trusts, whereas those of us outside of the merger areas, on the cusp, will not.

If N&N, NCH&C, CSS, ECCH were able to adopt the ELAROS technology, I believe we as patients would benefit.

The webinars I have attended demonstrate the support it offers patients, clinicians and GP’s, but I expect it is budget limitations. I don't know that for sure.

The new mergers of N&N Trusts, CSS Trust and surrounding areas such as Peterborough, Luton, Dunstable, Bedford, parts of Lincoln, Bury St Edmunds etc. may also be influencing these decisions, as there appears to be a lot going on to meet deadlines. I don't know that for sure either, it is speculation on my part based on things I do know, may know.

I am also a supporter/ lay person who has been involved in the BETA testing and development of C19-YRS and Open-OH, except that I cannot support the latest Open-OH work as I don't have a compatible wearable. ELAROS have been good supporters of this group too.

There is a lot more at stake behind the scenes no doubt. I can appreciate their reasons for confidentiality between the Trusts and Organisations that presented on the day. I believe the decision to exclude people that were non clinical was a decision taken outside of ELAROS and was a last minute one.

I can't say more than this, it would be further speculation and I value my collaboration with ELAROS and my role as a Patient Research Champion with NCH&C and my involvement with N&N Trust, CCS Trust and ECCH CIC and the MEA.

I would rather, as per our guidelines, try to avoid direct criticisms of the NHS and individuals here, as this is not the platform to do that. I hope we all get to know what's happening ASAP to settle things down and progress support and potential interventions for Long Covid and ME-CFS.

Thank you for your support and input too.”

Plus.... Quote from early on in thread....

'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.”

 

[Trish]

I don't think it's the use of technology for some aspects of health care that's the problem here. I think it's what content and functionality is provided on that technology, and whether it's intended as an adjunct to medical care, or as a replacement.

We still need medical diagnosis, investigations and symptomatic treatments which can only be provided by a doctor, not by an app or a booklet.

For ME/CFS the only part of our care that is realistically catered for by an app is accessible ways of tracking our activity and symptoms to help with pacing, if that suits us, and a simple guide to how to use it, and some links to reliable sources of further information and support groups. Plus a route to communicating with the doctor possibly.

 

[Kitty]

whether it's intended as an adjunct to medical care, or as a replacement.

It looks very like a neat device to (a) keep people with poorly understood illnesses away from the NHS, and (b) collect data on them for purposes that can't be assumed only to be connected with healthcare.

Supporters of it might think I sound like a conspiracy theorist. I might think they sound terrifyingly naive.

 

[Suffolkres]

5th June revisited. JemB...
'
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...'


I can.
It's NHS HEALTH and..WORK 2004 (AfME Chris Clarke)

Plus a little AYME 2005 Lightening Therapy and Estha Crawley a AYME Conference Milton Keynes...

Plus PACE 2007 and NICE ..? AfME ?

All over again!

I am too old for all this stuff and nonsense....

 

[Trish]

I've been thinking back over the last 35 years since the psychiatrists adopted all post infectious and other fatigue syndromes as their territory and decided we were misinterpreting our symptoms and too scared to move and needed CBT, with a side helping of exercise therapists thinking we were deconditioned and needed GET.

Now with Long Covid, and the ME/CFS NICE guidelines, it seems the rehabilitationists are in the ascendency with a side helping of psychobabble, so it's pacing-up, GET-lite and CBT again.

Why can't we be treated as sick people who need convalescence and proper medical care?

 

[Suffolkres]

It looks very like a neat device to (a) keep people with poorly understood illnesses away from the NHS, and (b) collect data on them for purposes that can't be assumed only to be connected with healthcare.

Supporters of it might think I sound like a conspiracy theorist. I might think they sound terrifyingly naive.

I think S4ME, and Trish's incredibly fair and steady hand unpicking these 'broken pieces' is now at a point needed some direct action collectively from S4ME?

A Task Force approach?

Andy Peter Trish etc Hutan, David T Jonathan to thrash this over? Brian Hughes? Keith G? Academics like Luis Nacul and LSHTM

in first instance? Eleros suggest they are seeking an Internatinl market...so...

Eleros seem open for me, us? to get back to them, and for them to listen and learn ?
(Re my email from Roman, released to Trish DM.)

We cannot allow this lack of transparency and openness to continue any more.
We need that Seminar released first off !??? Or Charity Commission Competition and Market's Authority Complaint ??

Trust has been lost, confidence shredded.
Reputational damage is not a possibility, it's a fact for the MEA .
BACME charity never secured a good reputation!
I think having had direct chats with CEO this will be a sensible way forward.

I could forward contact number with permission?

No more back room wheeler-dealering by non clinical well meaning charity, or patient 'normal for Norfolk folk'....or charity paid personal.

and for them all to understand the danger, inherent risks Coroner Reg 28 recommendations,

to properly engage with S4ME to understand our collective membership concerns?

Apps? particularly over suitability for severe ME and CYP 18-25's.

To understand thar MEA and BACME personal should have no involvement with S4ME in thus debate because they have made a decision that patients and co-production groups do not know best....

The debate is; a patient safety, legal and ethical one?
Quality Control

1. not about digital approaches or about Government's aspirations (save on LTCs and make patients self management to get back to a sensible work life balance. ....(I wish!),

2. It's about patients safety, prevention of harm and prvention of PEM, quality and control of products.

3. Suitable ArrangemenDisability under DDA and Care Act 2014, for a serious, unpredictable and highly fluctuating LTC, ME or Post LC ME?

4. Patient choice and patient driven App availability to self management ( different products for different needs eg Visable and Vagas nerve stimulation Should be ani imperative.

5. I am sick and tired of the ,
'Daddy knows best'...... MEA BACME ( formally AfME and AYME) approach.'

Today sent out my link to the 1999 Panorama programme 'Sick and Tired'.
After 30 years fighting, I had to stop at Prendergast, Great Ormand Street, another heavy handed, Daddy knows best.. as I felt traumatised at the memories of that time and being treated as an FII parent myself.

What do others think?

Much is at stake here ..

 

[Sasha]

I think S4ME, and Trish's incredibly fair and steady hand unpicking these 'broken pieces' is now at a point needed some direct action collectively from S4ME?

A Task Force approach?

Andy Peter Trish etc Hutan, David T Jonathan to thrash this over? Brian Hughes? Keith G? Academics like Luis Nacul and LSHTM

Hi @Suffolkres - if you want the attention of individual people on the forum, you can put an '@' in front of their name, like I did for yours. If you type '@' and then start typing their name, the forum will start autofilling after a few letters. They will get tagged (the little red marker at the top of the screen) with a link to your message.

 

[Kiristar]

It looks very like a neat device to (a) keep people with poorly understood illnesses away from the NHS, and (b) collect data on them for purposes that can't be assumed only to be connected with healthcare.

Supporters of it might think I sound like a conspiracy theorist. I might think they sound terrifyingly naive.

The privacy notice references HIPAA
American legislation allowing for US export of Health data. There's no explanation as to why that should be there, unless they want to sell our data to us insurers....