UK company Neuro ProActive

Ian NeuroProActive

Ian NeuroProActive

Established Member
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
 
Last edited by a moderator:
Hi Ian, I have had a quick look at the company website and watched the introductory video. While I can see that a web based service may be helpful for people with ME/CFS, I am struggling to understand just what exactly you provide.

I have some questions and comments:

I note that you list chronic fatigue syndrome (ME) as one of the conditions for which you provide services. It might be better to change that to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, shortened to ME/CFS which is what NICE uses in the current guideline and is preferred by many patients.

Secondly you describe what you do as 'rehabilitation' and talk about enabling patients to 'self manage and maximise their recovery'. Since there is no effective treatment that leads to recovery for ME/CFS and for some other neurological conditions, use of the term recovery in this context is misleading and could be seen as false advertising. Later the video talks about patients being enabled to 'maximise their potential recovery'. Again, not appropriate language for some conditions including ME/CFS.

Next I looked at your clinical advisory board. The members are a professor of Healthcare Research with an OT background whose research area is 'clinical services and specific rehabilitation interventions'; a physiotherapist in private practice, a senior lecturer in psychology who researches 'well-being and emotion regulation after acquired brain injury (ABI), as well as core areas of past-injury difficulties such as memory'; a music therapist; and a stroke patient representative. While all very worthy, I see nobody there with a special interest in ME/CFS and who is likely to be up to date with the new NICE guideline which differs significantly from the previous one.

And finally, for now, some questions, though I'm sure others will have questions too

1. What training have your therapists undertaken on the new NICE guideline for ME/CFS?

2. What steps have you taken to ensure all your therapists who treat people with ME/CFS advice will be fully NICE compliant?

3. What treatments and management advice are you likely to offer to people with ME/CFS and by which specialism?

4. I assume you provide some sort of written materials for people with ME/CFS about symptom and activity management. Can you provides us with a copy of these, or at least a summary of what people might expect to receive.

5. Your blurb says you have consulted widely with clinicians and patient groups. Please can you clarify for us which ME/CFS clinicians and patient groups you have consulted.
 
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?
 
Having taken the time to look at the website, watch the video and post my comments and questions, I have just realised that I may have misunderstood what this website provides. Maybe it's just a portal for online communication between patients and their therapists from their local clinic?? Does the company provide the therapists?
 
Ariel said:
I also found it really unclear what this was supposed to be.
Click to expand...

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.
 
I have skimmed the terms of use and don't understand all the jargon. The impression I get is that they are simply providing a platform for patients and therapists to communicate with each other. It seems to be completely up to patients to check the therapists qualifications and suitability to be their therapist if they meet via the platform. The owners seem to have tied up in legal knots taking any responsibility for anything. I'm not impressed.
 
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 said:
I have skimmed the terms of use and don't understand all the jargon. The impression I get is that they are simply providing a platform for patients and therapists to communicate with each other. It seems to be completely up to patients to check the therapists qualifications and suitability to be their therapist if they meet via the platform. The owners seem to have tied up in legal knots taking any responsibility for anything. I'm not impressed.
Click to expand...

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?
 
Last edited by a moderator:
Kitty said:
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.
Click to expand...

hi, thanks for your comments. We are also web based so a smartphone isn’t a requirement
 
Trish said:
Having taken the time to look at the website, watch the video and post my comments and questions, I have just realised that I may have misunderstood what this website provides. Maybe it's just a portal for online communication between patients and their therapists from their local clinic?? Does the company provide the therapists?
Click to expand...

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.
 
Trish said:
Hi Ian, I have had a quick look at the company website and watched the introductory video. While I can see that a web based service may be helpful for people with ME/CFS, I am struggling to understand just what exactly you provide.

I have some questions and comments:

I note that you list chronic fatigue syndrome (ME) as one of the conditions for which you provide services. It might be better to change that to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, shortened to ME/CFS which is what NICE uses in the current guideline and is preferred by many patients.

Secondly you describe what you do as 'rehabilitation' and talk about enabling patients to 'self manage and maximise their recovery'. Since there is no effective treatment that leads to recovery for ME/CFS and for some other neurological conditions, use of the term recovery in this context is misleading and could be seen as false advertising. Later the video talks about patients being enabled to 'maximise their potential recovery'. Again, not appropriate language for some conditions including ME/CFS.

Next I looked at your clinical advisory board. The members are a professor of Healthcare Research with an OT background whose research area is 'clinical services and specific rehabilitation interventions'; a physiotherapist in private practice, a senior lecturer in psychology who researches 'well-being and emotion regulation after acquired brain injury (ABI), as well as core areas of past-injury difficulties such as memory'; a music therapist; and a stroke patient representative. While all very worthy, I see nobody there with a special interest in ME/CFS and who is likely to be up to date with the new NICE guideline which differs significantly from the previous one.

And finally, for now, some questions, though I'm sure others will have questions too

1. What training have your therapists undertaken on the new NICE guideline for ME/CFS?

2. What steps have you taken to ensure all your therapists who treat people with ME/CFS advice will be fully NICE compliant?

3. What treatments and management advice are you likely to offer to people with ME/CFS and by which specialism?

4. I assume you provide some sort of written materials for people with ME/CFS about symptom and activity management. Can you provides us with a copy of these, or at least a summary of what people might expect to receive.

5. Your blurb says you have consulted widely with clinicians and patient groups. Please can you clarify for us which ME/CFS clinicians and patient groups you have consulted.
Click to expand...

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.
 
Ian NeuroProActive said:
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.
Click to expand...


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.
 
Ian NeuroProActive said:
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?
Click to expand...

There was no anger or aggression involved in my comments, and no intent to misrepresent on my part, just simple lack of understanding of what service your product actually provides.

I speak as I find, Ian. I did my best to understand from perusing your website, and watching the video on the website twice, what your product does. As you can see from my questions, which were honestly put, I clearly didn't understand what service you are providing. I still don't. I think that is a big problem with your communications on your website. If I misunderstood it, others will too.

As to my comments on legal documents, I'm not a lawyer, and don't pretend to understand all the legal requirements of this sort of product. All I can say is that as a lay person, it put me off any idea I might have of using the product. Particularly the part where it suggested to me that if I were to join in order to find a private therapist to help me with managing my ME, it is entirely up to me to vet whether the individual I choose has appropriate knowledge and experience to help me in a NICE compliant way. Just saying they are all registered gives no idea whether they are competent with a particular disease.

I had assumed from what I read that you were actually providing therapists with specialist training in specific neurological disease rehab and management, and would be ensuring that they had experience and training specific to that condition. As you may know, rehab suitable for some conditions can be seriously detrimental to people with ME.

I thought you were offering a complete specialist therapy service as an alternative to attending a local NHS specialist clinic. I now have no idea what you offer. Is it just a portal for people to communicate with their therapist provided by their local clinic on days when they can't travel to the clinic and between visits? If so, that needs to be made clearer.

I think it would be helpful for both patients and therapists if the website information were expanded to explain in straightforward steps how it operates and what the patient is likely to experience, and how it can help patients with managing their symptoms. Perhaps a couple of fictitious case examples that might show what process a person, for example, being treated following a stroke, and a person with a chronic disease - showing what they might experience and how it helps them.

A small point, but important in the context of ME/CFS, I note you did not address the use of the term 'recovery' which for ME/CFS is not an appropriate term to be used in any offer of a service aiming to help people manage their symptoms.

I am pleased to hear that Physios for ME are involved. Perhaps my comments and questions reflect the fact that those involved in setting it up and signing up to use it have been given more information than is on the website, so are not mired in a sea of confusion as I am.
 
Ian NeuroProActive said:
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.
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom