UK company Neuro ProActive

Dear all,

It’s great to be part of this forum.

Neuro ProActive is a web and app based, therapist led digital platform for the rehabilitation and management of long-term neurological conditions.

We support six allied health professional disciplines; Physios, Occupational Therapists, Speech and Language Therapists, Dietitians, Clinical Psychologists and Arts Therapists. Clinicians can be NHS or Private Practice.

Developed over five years to medical device standards, and in consultation with hundreds of patients and therapists, we have been independently reviewed as the number one platform for Neurological Conditions by ORCHA.

Initially only available in the UK, we plan a staged global rollout throughout the next two years and Neuro ProActive is being adopted by 28 NHS Trusts.

If you’d like more details, please visit

Code:

www.NeuroProActive.com

. You can also connect with us on Twitter, LinkedIn etc

Best, Ian

 

From what I have read, this service does not seem particularly relevant to ME/CFS and its management, speaking as someone who has the condition and has tried many approaches over the years.

I share Trish's concerns and hope the questions are addressed. Additionally, I wonder whether thought has gone into the fact that using this service may make ME/CFS patients' condition worse due to post-exertional malaise and/or related inappropriate advice, and specifically into how to safeguard against this. That would seem of paramount importance.

Are you going to provide written clear warnings and information to patients and similar education for practitioners to ensure there is adequate knowledge of PEM and the potential for deterioration when taking on additional activity as an ME/CFS patient?

 

I also found it really unclear what this was supposed to be.

I still hope there are warnings about PEM communicated to patients and practitioners dealing with ME/CFS.

 

Yes, me too. @Trish asked some really useful questions.

One of the services offered that might be useful to patients is occupational therapy, but in the UK this is usually accessed by self-referral to local authorities. For people who're not working, the main purpose of an OT visit is to be assessed for aids, appliances, and/or Disabled Facilities grants, and councils will often insist that their own staff assess people for these even if another OT has already seen them.

We don't often get offered dietician support, so that could be interesting for people with a very limited ability to prepare food, or who have multiple food sensitivities. But again, clinicians would need to have specialist training on ME, as I suspect many of them will have little or no idea just how severely impaired many of us are.

I don't think many PWME would be able to pay the subscription to the app—they'd probably only use the service if their GP practice had opted in and could give them free access. They'd probably also need a smartphone, which would make it inaccessible to some in the community.

 

Terms of use: https://neuroproactive.com/wp-conte...o-ProActive-terms-and-conditions-12-08-20.pdf

Company data: https://find-and-update.company-information.service.gov.uk/company/05780057

 

I don't like websites that are seeking my money and which don't have an upfront of: who (named persons with whom the buck stops), where (physical address) and what (simple statement of what is being payed for). The lack of that in a service which by definition is targeting a population which includes people with varying degrees of cognitive impairment, requires an 11 on my irony meter.

If this is the product of 'consultation with patient groups' then I can only conclude there must have been some pretty bad question setting. That said I can see why the health managers and politicians probably love this, so bright and shiny and online so no actual nasty real world bodies to mess up all the bright shininess.

 

Dear all,

Thanks for all your comments. We launched Neuro ProActive in September and we are currently rolling out to 28 NHS Trusts in the UK. We simply wouldn’t be seeing this kind of rapid adoption if we didn’t have some value to add and represent value for money.

The development of the platform took five years and has been carried out in adherence to NICE guidance and medical device requirements. As such the platform can connect to Electronic Patient Records and Hospital Systems.

Hundreds of patients, families and AHPs were consulted over the last five years, including PhysiosforME.

Despite an overwhelming positive response from the NHS, clinicians in private practice and patient groups, I have to say i find some of the comments made with regards to the commercial motivation behind Neuro ProActive deeply troubling.

We always engage with patient groups in good faith and will be releasing a further update next week which is in direct response to requests from patients and clinicians for additional functionality.

The HCPC is the regulator for all AHP disciplines. All AHPs on Neuro ProActive are appropriately qualified and registered with the HCPC fulfilling their requirements. I’d suggest that if more training is required for AHPs with reference to ME, then it is the HCPC as the regulator that this should be directed to.

I have always accepted that there is more we can learn and we are absolutely committed to continuous improvement. I welcome constructive engagement. Where anger is misdirected or based on misunderstandings I’m afraid there is little point in trying to convince some people otherwise.

Again, I would strongly urge people to look at the role of the regulator (HCPC) in ensuring NICE Guidance is carried out.

 

Trish, I find your comments here really disappointing. I’ve joined this forum for constructive engagement. Terms and Conditions, Privacy Notice etc are legal requirements. Every platform will have them and if they don’t they won’t be medical device grade like we are. Can I expect some constructive engagement or is my participation in this group merely an opportunity for some to post aggressive (and factually incorrect) comments?

 

yes, we have consulted PhysiosforME

 

hi, thanks for your comments. We are also web based so a smartphone isn’t a requirement

 

no, all therapists are HCPC registered and regulated. They come from the NHS and private practice. We don’t seek to replace face to face interaction between patient and clinician but to provide patients and families an infrastructure for self management between sessions.

 

1. all therapists on the platform are HCPC regulated

2. that is the job of the regulator and the therapists employer

3. we don’t offer treatments. We host six AHP disciplines which are able to use the platform as best they see fit in treating patients

4. no, we provide no written materials. That isn’t our role

5. I’m not sure what ‘blurb’ you’re referring to. PhysiosforME were consulted and you should contact them to corroborate this.

 

Come off it @Ian NeuroProActive. The people here have their heads screwed on. The fact that you have had 'rapid adoption' means nothing. Maybe you are not aware that IAPT has had widespread adoption despite being based largely on unreliable evidence.

The patients here are not 'difficult' (I am not a patient, I am a professor of rheumatology at UCLH). They are different in that they have a healthy scepticism and don't want to be taken for a ride any longer. The community here have been significantly involved in the review of the NICE ME/CFS guidelines - maybe worth taking a look. I don't quite see how you can be offering rehab services for LongCovid when there are no reliable data so far on what to do.

Health Professionals need to get real rather than spend their time selling things with no basis.

 

Hi Ian. Thanks for these responses, and for engaging here. Just for what it's worth I am an unwell person who would not engage in a pointless aggressive conversation with someone online as it is quite hard to write and read a lot and it's a waste of what little I can do in a day. (Frankly it would also be too upsetting). I do not view this as an outlet for aggressive comments and hope to achieve something constructive.

I think perhaps some of us found it initially quite confusing as to the nature of this tool/service. I cannot speak for others, but many of us may have had experiences of being referred for ineffective or harmful services with concepts such as "rehabilitation" that do not fit the illness we have. Unfortunately there are no effective treatments for ME, although it may benefit some people to see an OT who is familiar with ME to advise them, particularly in early stages of illness. The trouble is that many healthcare professionals are unfamiliar with ME. You may be aware of this situation but I am hoping to give some context as to why looking at some of these materials may trouble some people with ME who have been quite badly treated by the system and looking for treatments, not to be - as we often are - fobbed off with dangerous (to ME patients) notions of "rehabilitation". This may be beyond the scope of your role. However, it's the context in which many of us find ourselves so it's hard to engage without that understanding. Nothing here would seem to help me personally, but others may feel differently such as wanting to speak to an OT.

Of course, you cannot come up with treatments that don't exist. To the extent that PEM is a problem for us, this really presents a challenge of accessing services/appointments/getting appropriate advice. The concern is that people will make themselves worse trying to do something ineffective and neither HCP nor patient will really be educated about what is going on. Of course, it is possible to try to contact the regulator. But it would be really great if the providers of this tool/service took steps to pro-actively consider the needs of ME patients if it is being said that the tool is for their use.

You say that there is a web interface, but many find this hard to use as well and may not be accessible. I am just drawing attention to this problem. I wasn't sure if the smartphone issue was a practical point (mine runs software that makes it too old to use as I don't use it much due to being housebound) or an accessibility point re: cognitive/sensory issues and websites. Some of us can't use services like this easily for health reasons.

As for the point about cost-effectiveness, that isn't really something that helps us on the patient end. Ineffective and potentially harmful "treatments" have been previously available under the guise of cost-effectiveness. Of course, it would have been cheaper to do absolutely nothing as it made us worse off to spend over a decade pretending exercise (GET) and CBT could treat us. We got worse than nothing. Many patients also end up (unknowingly) wasting money on unevidenced and ineffective treatments (nutritional supplements, questionable programmes etc), so talk about cost-effectiveness to other parties can leave us cold.

I would write more but this post has been long enough. I hope there can be a useful conversation, especially when we can spend more time understanding aspects of the materials presented and what this would mean for us. Any help provided in understanding this would be appreciated.

Is it the position that nothing will specifically be done to make sure ME patients aren't harmed through lack of education/information unless the regulator is involved?

 

It appears to simply be a web/app based connection thing.

Exactly the same idea as uber, justeat or a host of other services.

And in the same way take a cut without guaranteeing your food, or ride will be any good, meet your hopes/expectations.

The fact it's 'medical' makes no odds, as they themselves do nothing other than providing an interface.

Just my opinion.