UK company Neuro ProActive

I would second Trish's comments @Ian NeuroProActive. It is completely opaque to me as a physician what your organisation is providing, other than a source of income for itself.

It is indeed odd that you should approach an ME group now just after NICE has established that rehab programmes are inappropriate for ME and that therapists need to go back to square one and provide some evidence for their services. Were you aware of that?

 

And the patients are being remarkably civil. To accuse them of aggression and making incorrect statements (that are in fact correct) seems to me pretty poor.

 

I guess this tells Ian's story:

https://www.openaccessgovernment.or...patient-neuro-rehabilitation-platform/106369/

We live in a world that wants to take everyone for a ride. It comes in different forms. And life is tough to start with.

 

Hi @Ian NeuroProActive,



With this statement NP must have done a very thorough assessment of all the relevant NICE guidelines, else that claim could not be safely or legitimately made. Can you identify the relevant NICE guidelines that have been assessed therefore please, that underpin that claim. It would be good to know. Thanks.

 

it looks to me to be a portal that enables you to configure a virtual team of professionals that are dealing with your healthcare, and also to allow other family members to have access to this information.

If the NHS had a functional electronic health record system then this might not be needed but I can understand the concept of why it has been put together.

If seeing a number of different therapists it seems very common for them not to have access to any current medical information on a patient. For example my GP has my blood tests done on the request of my ME consultant who I see at the local hospital. The results are supposed to be available to the consultant via the hospital system but he never seems to be able to access them. So I always make sure I get a printed copy and take them along with historical ones as he normally wants to see how they have changed and if he tries to look these up it crashes his computer.

Then there is also the other hospital where I have rTMS sessions at the request of my consultant and they have to communicate by letter as they are a different hospital system.

My father also had a brain injury and the number of specialists that are involved in recovery is much larger. So I can understand Ian’s frustration and how he saw the need for a portal such as this. Especially where patients might need to have a family representative able to speak for them. When my Dad was in hospital it was just my name written on his paper folder that made me the contact for them ( this was about 20 years ago so electronic systems were even worse then) . And even though I was written down they still couldn’t manage to contact me when they needed consent for an emergency operation and they were calling the wrong number.

Having this portal would mean all specialists could see up to date information and not have to wait for letters to come through from each other.

I guess the problem with ME patients would be that most of us don’t have any consultants or specialists. The guidelines say we should have a care team that monitor our needs but it’s hard enough to even get a GP to do anything. I bet there aren’t any of us that have a team of physio, neuro, GP etc working as part of a team on our health. If anyone does it would be interesting to know!

So in theory it is a good idea but I don’t think we are the right market for it at the minute as we are still having a hard time getting any supportive treatment that isn’t just therapy based.

As an aside I saw a different GP last week about a non related ME a issue and he was asking me about some of the strange things my consultant had prescribed for ME. As he was taking an interest I asked him what his view on ME was - wether he thought it was physical or psychological. He knew that the NICE guidelines had changed and that CBT shouldnt be used as a treatment so he acknowledged there was a physical component which is now recognised. But he said there must be a strong psychiatric component as well because last studies have shown that putting people on anti depressants had mad them better. I was walking out the door at this point and wasn’t sharp enough to say why those studies are incorrect. But it shows how even with knowledge of the guideline change GPS will still have these ideas which are still barriers to us getting other treatments.

sorry for the long post!!

 

Well if that is what it is then the website should say so in a way people can understand.
If they are interacting with NHS staff I doubt another electronic link would do more than waste even more time with people fiddling with electronics and finding they don't work.

 

And why does is this system now posted on an ME/CFS site?
That doesn't happen by chance.
If it is being promoted to the wrong people what else might not quite work?

 

I agree that this is something the NHS a should provide but as they haven’t even managed to get the electronic patient record (EPR) up and running then something like this is way off in the future.

if we had an EPR that worked across trusts then if you got taken into hospital they would just be able to look up what medications you are on etc. They still have to phone up and get records sent across because there is no central system.

so in the meantime apps and portals and other solutions are being used and developed and I think this fits into that category.

 

I imagine because ME has been listed in a neurological list somewhere. And as a private company the developer will want to promote to as many customers/patients as possible.

 

I agree. Having worked in the IT industry I have found though that people working with apps or software are so embedded in the product that they forget to step back and look at it as though you are explaining it to someone who knows nothing about it.

I think that’s probably why I am trying to explain it as I used to be in IT marketing and had to try and get people to do explain things in much more simple terms.

 

Mm. But we are told the company has been constantly talking to all the relevant people. Not just looking up a neurological list.

 

To me this simply looks like a platform to connect people with neurological conditions, to the relevant therapists that could help them. People with neurological conditions usually need a multi disciplinary team, and not all of them get it.

Especially in a time when it’s really hard to get access to NHS physios & therapists, even if you need them. After my initial 6 weeks with help, I have been on a waiting list and without a community physio for 6 months, even though I needed one. So actually something like this could have been really helpful for me. In fact I was looking into a private physio company at the time who had an online platform like this. Yes it would have been up to me to find out if the physio understood ME or ME type symptoms, and if not to try to get them to understand, but isn’t that the case for *any* portal or if you were to approach *any* physio / OT / dietician, whether it’s a private company, individual, NHS or community services? I had to do that with the community physio who saw me at home. I had to explain it to the dietician. I had to do that with the OT. Now I’ve finally got a new physio, I’m having to do it again & I’m not sure they understand. It is really hard. If they don’t understand, I have to stop seeing them. But if I waited for someone who was trained in ME or PEM, or who had read and understand the new guidelines, I think I would never get help. And I can’t afford to do that. And I don’t see why others should be without help either, waiting for that time. Yes we need to push for therapists to be educated in PEM but that’s a different fight.

I agree with @Sbag i think some of the problem is that PwME don’t currently get that multi-disciplinary help. And even if they do, it’s not often the help they need, so maybe PwME don’t seem to be the right market for this. But I still think it could be helpful.

I would’ve thought something like this could help a lot with accessibility. people can connect with therapists online - some with severe ME cannot access the internet, but I think even more PwME struggle with in-person appts, so online services are much more accessible, especially if people can communicate in their own time. OTs, physios and dieticians, could potentially be really helpful to PwME who are isolated, who are without help but want that help, or can’t attend lots of appointments.

As to the word “rehab” I think thats on the website because with neurological conditions there seems to be a focus on rehab & exercise. Especially for things like strokes and relapses in condition. But the website says “rehabilitation and long term management”, so it’s not just rehab. And it doesn’t have to mean a good ME therapist can’t potentially be found through the portal, who understands the differences of ME patients. As this is going to be rolled out across the NHS, we probably will come across this at some point if we seek help from hospital therapists, especially now in the time of covid pressures. I just don’t think it’s a good idea to push away services that have been set up in a way that could actually be more accessible, and gives online (and timely) help.

 

I am also worried about this. I have privacy concerns. I would not want different parties having my notes and information. Is it possible to opt out of this? How much control does the patient have? We are often powerless and our futures dictated by people with access to "information" about us that may be wrong and we cannot even see.

Who can see what and how much say does the patient have?

 

This is a very good point. Having obtained my notes a while back, I was horrified to see they consisted almost 100% of misinformation/disinformation. They list trivial symptoms I've never had, omit important symptoms I have had, making my condition sound like no big deal. One doctor described me as 'this healthy-looking woman' despite my being in a wheelchair and so sick I could barely move, another doctor stated that I grew up in some country I've never even been to; there are many such howling errors. There is barely a shred of truth in any of my notes.

So I really would not want these shared with random prospective therapists without meeting me first. I'd want to give them any necessary info first-hand, while explaining that my notes are full of errors. I have written numerous 'addendums' , that is, letters correcting my notes (I was told by a hospital complaints department that although errors can't be changed once they're in your notes, one can write an addendum as a way of 'correcting' them) but I'm sure doctors don't read the patient letters, only the GP or consultant ones.