At home with oxygen UK.

[Maggity]

Hi, please remove this if not allowed.I have noticed a few people posting questions on the use of home oxygen and would like to let any oxygen users (or carers of) know that I have started a Facebook support group, which so far is proving popular and our numbers are growing substantially. It is called At home with oxygen UK and can be found on Facebook groups. It is a private group and you must read the rules and answer the questions before approval can be given. I am a15/24 oxygen user and found that most support groups were in the USA and whilst helpful, all the systems, health etc were completely different from ours.

I have been a member of this forum for several years.

Thank you

Maggie

[Difficul]

Hi Maggity. Thank you for letting us know. Perhaps you might pass on any useful hints to those of us who use this forum but don't want to access Facebook.

[Maggity in reply to Difficul]

Hi there, of course I will, and can ask about the sore ears on your behalf if you like. Haven't had that mentioned by anyone so far. Will let you know.Maggie

[Maggity in reply to Difficul]

Hi, posted the question on your behalf and it's been suggested that you try wearing cannula to the back. I've just been trying it and it seems OK. Will let you know if anyone suggests anything else.

[HTZB]

thanks I’m an oxygen user. I’ll check out your face group. I am staying with my daughter in Scotland from England and been unable to get one litre oxygen tanks for exercise or walking.

[Maggity in reply to HTZB]

Hi, I am in Scotland and although I now use a POC I used to use the smaller cylinders for exactly that reason. They were provided by Dolby vivisol but I can't remember exactly how much was in them, they didn't last very long though. Maybe someone else on the Facebook group can help.

[HTZB in reply to Maggity]

Thanks. i will look at facebook group Best Holly

[MoosterMoo]

Hi Maggity, thank you for letting us know, I'm a member of a FB oxygen group but, as you say, the members are mainly USA. I'll head over and join now 😁

[Maggity in reply to MoosterMoo]

Look forward to meeting you 😊

[PaulineHM]

Thanks Maggity for letting us know about the Facebook group for oxygen users UK.

Will take a look as it can prove to be a big adjustment to our lives when first prescribed.

I have just started a local Facebook network page for people with Resp conditions in Gloucestershire so perhaps it is worth posting that on here as well ?

Thanks again .

Go well,

Pauline

[Maggity in reply to PaulineHM]

Hi Pauline, yes I think you should. Over and above letting people in your own area know it spreads the word and hopefully raises awareness off conditions that drastically affect people's lives and are not really spoken about. I also voluntarily run a local Breathe Easy Group which is affiliated to Athsma &Lung Uk. Good luckMaggie

[PaulineHM in reply to Maggity]

Thank you Maggity,

I will post up our local Facebook group. Thank you.

So pleased you are able to lead the local Breathe Easy group.

Since the pandemic we have not had any Breathe Easy groups across the county. I have had initial discussions with ALUK about the possibility of holding one using Zoom. Unfortunately I have not been well at all for the last two months so that idea is on hold for the moment. Hopeful though that we will be able to get it up and running before too long.

Go well,

Pauline

[Maggity in reply to PaulineHM]

I kept ours going throughout covid lockdowns by using WhatsApp. There was a core of about 6 of us and we were lucky that could re establish ourselves in the same location as before covid. We've had the support of resp nurse and physio spreading the word about us. Our membership is around 29 but we usually have about 14 in attendance.Good luck with yours as they are so worthwhile.

I hope you feel better soon

Maggie

[PaulineHM in reply to Maggity]

That is fantastic !! Very well done for keeping it going. I am hoping if we can get something going then Breathe Easy groups face to face may make a come back !! I really appreciate your encouragement, thank you.

Go well.

Pauline

[Xrossstich in reply to PaulineHM]

Hi Pauline, are there any breathe easy groups in West Sussex preferably near Bognor Regis, my husband is really struggling with Pulmonary Fibrosis among other illnesses. Thank you Crossstitch

[Maggity in reply to Xrossstich]

Hi there, you can find out by googling Athsma&Lung UK, they have a list of them all with contact details.

[Xrossstich in reply to Maggity]

Thank you

[PaulineHM in reply to Xrossstich]

Hi, as Maggity says if you look on the Asthma + Lung website there should be a list of Breathe Easy groups on there, or give their helpline a call.

There is a organisation called Action for Pulmonary Fibrosis. they may be able to offer you some support as well ?

Keep in touch...

Go well,

Pauline

[Fircone]

Hi Maggity, I am a member of your group. It’s good to have one specifically for us 02 users. Thank you for starting it.xxx

[gingermusic]

I have just been onto Facebook but cannot find your group at all can you help?

[Maggity in reply to gingermusic]

Don't know how to post a link but if you go into the groups section and look up At home with oxygen UK. If that's what you have been doing and it still doesn't work come back to me. A lot of people have joined this morning so it did seem to be ok. Good luck, we look forward to meeting you there 😀.

[gingermusic in reply to Maggity]

That is exactly what I did and nothing comes up so any help will be appreciated

[Loopylorre in reply to gingermusic]

Hi, I’ve just done it, this is what I found if it helps you, no idea how to do links but will see if I can work it out

Shows questions

[gingermusic in reply to Loopylorre]

I went into facebook clicked on Groups and put in what I needed to and nothing cannot get into it to answer the questions you did

[Maggity in reply to gingermusic]

I will see if I can send you an invite, but I will need your Facebook name.

[gingermusic in reply to Maggity]

Thank you it is Ruth Gosden

[Loopylorre in reply to gingermusic]

Don’t think I can get a link until I am a member, it’s still pending, but I see maggity is going to try to invite you now, sorry I was no help xx😊🌷🌺

[gingermusic in reply to Loopylorre]

Ok thank you for trying

[Maggity in reply to gingermusic]

Thus is the link. facebook.com/groups/9766663...

[Maggity in reply to Loopylorre]

Hi, your membership is still pending as you need to answer all the questions and agree the rules. I have messaged you so hope you don't mind. Look forward to welcoming you to our group 😀

[gingermusic in reply to Maggity]

Have joined thank you for your help just waiting to be accepted

[Loopylorre in reply to Maggity]

Thank you, have done it xx😊💐☺️

[Loopylorre in reply to gingermusic]

Oh no, I’ll see if I can get a link for you to use 🤞🏻🌺🌷😊☺️

[gingermusic in reply to Loopylorre]

Thank you that is most kind

[Loopylorre]

Thank you, will look you up on FB 😊🌺💐🌷x

[gingermusic in reply to Loopylorre]

Thank you for the link, I have now joined and just waiting to be approved. Really grateful for your help

[Wendywiffle80]

Good morning Maggity I have just read your post and am very interested in the support group but Im not on facebook so I have no idea how to access it. I've been on oxygen for over three years now and would very much like to be able to be in contact with people who are similar.have you any tips on how I can access please.

many thanks

[Maggity in reply to Wendywiffle80]

Unfortunately you can't unless you have a Facebook account. I have just checked. Sorry 😞

[Difficul]

Many thanks Maggity. Good luck with your Facebook community.

[AngieB72]

Thank you, I have joined.

[lovejoyliz]

Ok here is the link to the Facebook Group for at home oxygen UK

facebook.com/groups/9766663...

[Maggity in reply to lovejoyliz]

Thank you for posting this link, I didn't know it existed. Where did you find it?

[lovejoyliz in reply to Maggity]

Hi Maggity,

I just put At home with oxygen UK FB in the search engine and copied the url link from the FB site.

[Maggity in reply to lovejoyliz]

Hi lovejoyliz,Did that work?

Please let me know where you found the url link as I can't find it.

Many thanks

Maggie

[lovejoyliz in reply to Maggity]

From my Firefox Browser after putting in: at home with oxygen uk fb page...

facebook.com › groups › 976666300813681At home with oxygen UK. - Facebook

Sep 8, 2024 · This group is for people, and their carers, who have a lung condition and are receiving supplemental oxygen to maintain their oxygen levels, enabling them a safer

Hope this helps Maffity❤️

[RaspberryRed]

thanks, I have just joined.

[MoyB]

Thankfully, I don't require oxygen at home, but I think the Facebook group sounds like an excellent idea for those who do. I belong to a couple of other Facebook groups (health related) and, like HU they have given me a great deal of practical advice when none has been forthcoming from the medical community.

xx Moy

[Maggity in reply to MoyB]

Thank you 😊

[BreatheasyBe]

thanks Maggie I’ll have a wee look for it