Digital monitoring ?

[PaulineHM]

Hello,

Am wondering who here has experience of digital monitoring at home and how was it ?

The last 6 months have been very challenging with a long term lung infection, which partially improves with treatment and then comes charging back ! Arrrrggghhhhh.

I saw the consultant yesterday and using the digital monitoring technology to support me better was something we discussed and depending how it goes then possible IV treatment at home if needed.

Does anyone have any experience of such a similar service they have used their areas please?

Thanks y’all.

Pauline

[BenHall1]

Hi, sorry if I sound a bit thick BUT what do you mean "digital monitoring" ? I mean at its simplest I have a digital Blood Pressure monitor ! Just wanted to get on same wave length 😊

[PaulineHM in reply to BenHall1]

Not thick at all Ben, it is all so new.

This is what is happening in my neighbouring respiratory service - am thinking it might be something similar ? At the moment I would be in tier 4!! If it comes into being after I have been assessed then I can let you know more. Would that be helpful ?

nbt.nhs.uk/about-us/news-me...

Go well

Pauline

[MoyB in reply to PaulineHM]

That was an interesting read. If the system works it could be great for many people. Thanks for posting.

Xx Moy

[Patk1]

Sounds gd PaulineHM.ive been on bipap NIV for many years - it sends allsorts of info frm niv to hospital.tbh they only look when i have ventilation appointment,I can ring them anytime though. I also use an app for blood sugars,which record via Bluetooth. Of my own accord,I've a peak flow app too. Hope u feel better soon x

[PaulineHM in reply to Patk1]

That all sounds very encouraging Pat, so pleased it works for you. Can i ask you what the blood sugar app is please ? Thank you for sharing your experience.

Go well

Pauline

[Patk1]

Blood sugar app is " contour". It's gd as room to make notes etc

[Patk1 in reply to Patk1]

My blood sugar monitor,supplied by gp practise,is also contour ( contour plus blue).it does send recorded info through to gp surgery,but I've not had any feedback

[NieceByMarriage]

I have no experience of it but I think it has to be the way forward. At least they won't be able to claim they cannot give support if another Covid comes along. I have bought for myself a MIR spirobank home spirometer because I want to monitor more than just my peak flow. NICE was actually considering obtaining these for Telehealth purposes until people on the committee made noises along the lines of people can't be trusted to use such things properly and only medics can make proper judgements. All very well if one could only get in front of a medic. So the more people that prove we actually can be trusted to use these things, the better as far as I can see.

[PaulineHM]

Hello, it is very definitely the way forward and in the NHS Long Term plan, there is lots of mention of using more digital technology.

I have the my mhealth COPD app but because it isn’t currently supported locally by many clinicians so I don’t much see the point.

A digital spirometer is something I have device tested for a big pharma company in preparation for clinic trials but it didn’t suit me and fired up my hiatus hernia so I had to withdraw.

This is the kind of thing I have in mind - this is from a neighbouring health care provider.

cdn.prod.website-files.com/....

Thanks for sharing your experience.

Go well

Pauline

[pepparuby1]

no I’m afraid not Pauline. Not really sure what it is but I do recall last January getting one after the other as soon as I come off rescue

[PaulineHM in reply to pepparuby1]

Thank you... will see what happens eventually here.

[Hellodolly]

Hi Pauline

Any of us who use cpap are being remotely monitored digitally. The hospital can basically see whether you are using the equipment properly and how many apnoeas per hour you are having. The big brother element is hard if you are non compliant and drive for a living, because if you don’t use it they may inform the dvla. But for most of us it’s no problem and quite useful that they know what’s going on.

Good luck with it and I hope you get better soon.

[PaulineHM in reply to Hellodolly]

Ah thank you for replying... will wait to see what the consultant decides and what happens as a result of that.

[JPC2]

Hi Pauline, I have just finished digital monitoring it was excellent. I was given a box with a blood pressure monitor, a thermometer, an oximeter and a tablet. I took my readings twice a day and input them into the tablet. The nurses ring you if there’s anything they’re not happy with. I would definitely recommend it x

[PaulineHM in reply to JPC2]

Oh thank you for letting me know. You found it helpful and supportive by the sound of it ?

[JPC2 in reply to PaulineHM]

Yes it was reassuring that someone was keeping an eye on me and I didn’t have to go to hospital to be monitored. My nurse said they are using it more and more to try and keep people out of hospital, they’re hoping by monitoring people they can catch things before they get too bad.

[PaulineHM in reply to JPC2]

It does seem like a positive help and support. When I am so unwell for such a long time I lose my confidence. thanks for taking the time to answer and let me know.

Go well.

[JPC2 in reply to PaulineHM]

I hope you feel better soon.

Take care

[PaulineHM in reply to JPC2]

Thank you. That is kind of you.

[jackwok in reply to JPC2]

I have done similar in NE Derbyshire and it is called a virtual ward. Had the same as JPC2 but my box also had blood sugar equipment and a weigh scale. I took readings each morning and they were forwarded via the tablet. Also had a phone call each morning. It worked well.

[PaulineHM in reply to jackwok]

Sounds very positive. Thanks.

[davannh]

I recently took part in a lung study that had digital monitoring. It was all connected via the hospital to my smart phone and included a blood oxygen measure, spirometer a daily wellness questionnaire . It also took info from the health app including heart rate, sleep and steps.

[PaulineHM in reply to davannh]

Thank you... Was is helpful experience ?

[Coughingalltheway]

Hi Pauline,

I'd never heard of this either and I felt that the NHS website didn't explain exactly what is was so I followed the link of the company that monitors it which does explain more

doccla.com/livingwell

I think that this will be good for those who are confident in using technology or people who are new to copd.

As you are Tier 4, I think that it will be especially good for you as support for copd outside of office hours is still quite poor but hopefully, this service will be 24/7? That isn't clear yet so you might have to be our guinea pig and let us know? I haven't seen anything on Sirona about copd but they seem to be a local firm.

[PaulineHM in reply to Coughingalltheway]

Ah thank you for for sharing your views on the matter. I think this a local service up and running here in Gloucestershire but not met anyone who has used it yet. Yes Sirona is a local service in Bristol and NE Somerset etc.

Let see what happens here ...

[Coughingalltheway in reply to PaulineHM]

Let us know how you get on with it? I presume that it will be rolled out nationally after this trial as the NHS are using digital services more and more these days.

I'm having a small wager with myself that the first question will be "do you, have you ever smoked?" 😏

[PaulineHM in reply to Coughingalltheway]

Thanks for sharing, There have been a few trials up and down the country I think. Of course it will change in the way clinical staff and it will take time for them to get their heads around it too. What I find rather frustrating is that each local ICB etc does things differently and I would have thought there would be more consistency in their treatment approaches !

Smoking ? I think after 22 years of living with and being cared for with lung disease they will know the answer. My precious in house surgery pharmacist was a star and given the fact I have not smoked for 22 years considered me a never smoker- Yay!!

Have a great day...

Go well.

Pauline