Round 2 or is it Round 20 !!

[Delamere]

Looking for back up here does anyone in the UK administer their own IV at home have just had knock em down drag em out fight with consultant who says this doesn't happen .Have checked NHS website which says it does and is called OPAT so now l am asking the real experts so l have all my ammunition to hand for next battle

[Hidden]

I don't use IV anti biotics at home, but when I was very ill once and not responding to usual ABs, I asked the doctor if I could have IV ABs, he said no because that will mean you have to go into hospital and I am not admitting you to hospital (it was peak flu bug season, hospital was full) I had chest infection followed by flu then developed into pneumonia.

I was very upset at the time as it had been months my lung infection would not clear, ended up with diabetes and bronchiectasis on top of emphysema and the rest.

I think it is only in certain cirumstances IV ABs at home are prescribed.

If you can't get them prescribed to use at home perhaps you can then ask your doctor if an NHS nurse or community matron can attend you at home to administer them for you.

Hope you can get something sorted.

Best wishes BK

[Delamere in reply to Hidden]

Cheers Bkin so many conflicting treatments my respiratory team always say l must send sputum sample in at lst sign of infection to prevent escalation

[Hidden in reply to Delamere]

Yes that's the same as I have been advised. So hope you are feeling better soon. Take good care x

[Hidden]

Here is a PDF document you can download, its Leaflet titled

Antibiotic Outpatient

Parenteral Therapy (OPAT)

Service

This leaflet provides you with information about the OPAT service. Please note that this

information does not apply to our @home service. If you have any further questions,

please speak to a doctor or nurse caring for you.

guysandstthomas.nhs.uk/reso...

Hope this helps

[Delamere in reply to Hidden]

It does thankyou l have downloaded it on my phone x

[Hidden in reply to Delamere]

Great x

[sassy59]

Yes I believe there are people on here who administer IV’s at home. Hopefully they’ll answer your query soon. Take care. Xxxx

[Delamere in reply to sassy59]

Thankyou sassy59

[Hidden]

Yes, I’ve done home IVs loads of times over at least the last 10yrs. Usually arranged by my local hospital (Royal Sussex County) or sometimes directly from the Brompton. Your consultant is talking rubbish.

[Delamere in reply to Hidden]

Thankyou so much .l am well equipped now for next battle

[Mooka]

Yes I’ve done it several times. I have to do it via my local hospital (I usually go to a larger hospital further away). I think the hospital will need to have specialist nurses who show you how to do it and then are on hand if the line gets blocked. I find it a much better option than being in hospital. Good luck I hope you can sort something out.

[Hidden]

Oh yes it does. I do it and several others on here do it. The OPAT team at my local hospital liaise with my con at Bham and put the line in and supply the drug, the fridge to keep it in etc. This is all coordinated by another large hospital in the area. Your consultant needs to set about finding out how it is organised in your area instead if putting his hand up at you and blocking you. My stars ! Isn't life hard enough for us without people like that!

[Delamere in reply to Hidden]

Thankyou so much. I now have the proof that l need to go back to my useless consultant with. It is too late for this time but l am looking to the future which despite their best efforts l am determined to have x

[Karenanne61]

Cofdrop does and I've just seen a post from them.

[Delamere in reply to Karenanne61]

Cheers l have just picked it up

[cofdrop-UK]

Yes it does happen if you have a proactive consultant and team. Does your consultant not deal with CF patients or have a special interest in cf/PCD/bronchiectasis as some resp cons are not as keen and are not ser up with specialist nurses.

Like others on hear I have self administered my own IVs at home for some years ne, in fact I started my last course two days ago.

They can arrange the community to come to your home and administer the drugs for you.

They can also teach you to administer them yourself, which is useful if you are on an IV which needs to be given three times a day, the last one being very late at night.

At my hospital the decision is made by the con and there is a discussion about which ab and where would be the most appropriate place to administer and eith community or self ( which often depends on the ab and the frequency.)

You would normally have a midline put in (I have a port, xo I can crack on). The Cf nurses do bloods, mrsa and virus swabs, usual obs and normallŷ if you haven’t had that ab for a while you have one or two doses as outpatient, and it’s useful to do them yourself as a refresher.

It can be a bit daunting at first but does become routine.

We have a cf nurse come to our home mid course to change smart site and bloods etcand at end we go to the hospital and have line removed and bloods etc and see a con face to face.

This con needs to get up to speed.

Btw not all IVAbs are licenced for you to do at home yourself but can often be done in the community

Good luck

Cx

[Delamere in reply to cofdrop-UK]

Thankyou the team at my local NHS are very keen for me to have IV at home after having cannula put in and lst dose at hospital to make sure l can tolerate it. Unfortunately my respiratory team are very negative especially regarding nonCF bronchiectasis that l have they always want you in hospital for 10 /14 days not taking into account the detrimental effect it has on you. Especially when you are on a ward with 5 patients sharing a toilet so can't even do chest clearance as half way through some poor lady will be desperate for toilet. Also being on oxygen 24/7 you ate tied to the chair as for health and safety tubing is not allowed therefore no exercise so your two means of self managing are taken away from you when you need them most. Resulting in mobility being greatly reduced when you go home

[cofdrop-UK in reply to Delamere]

It’s such a shame when you are obviously so keen and proactive in self managing to improve your QOL that they are not open to it.

I’m sure if anyone can get them to change their minds, you can.

Cx

[Delamere in reply to cofdrop-UK]

Thankyou for your confidence in me l was starting to loose mine x

[Hidden in reply to Delamere]

This is a crazy situation. Could you take it up with the Clinical Lead for respiratory services, or the hospital’s medical director? You are safer and much more comfortable at home (no hospital bugs to pick up) but not only that, it’s utter madness for you to be occupying a bed if you don’t really need it!

[cofdrop-UK in reply to Hidden]

Absolutely H - false economy. Good advice.Cx

[Hidden]

Just to say, home IVs are not actually available everywhere. When we moved from Wales to England (and home IVs are not available full stop in Wales, not even to adult cf patients), one of the criteria for where we moved to was whether or not the respiratory team had provision in place for home IVs, both for paeds AND adult care. If you Google the hospital name and OPAT (or similar terms), that should help you determine whether or not the hospital/trust your respiratory team are based under have a policy in place to provide home IVs, but who pays may also play a part in the decision making process/problems you’re having. My understanding is that if Bod had shared care with the local respiratory unit, the specialist team would still be responsible for covering the treatment cost of home IVs. If your local hospital and your specialist team are different CCGs/Trusts, and your respiratory team are based out of a hospital/trust that doesn’t currently support home IVs, then that may be a factor in the situation you’re currently in.

[cofdrop-UK in reply to Hidden]

Really good point Charlie, but as Delamere says ‘the team at my local NHS are very keen for me to have IV at home’ would suggest it is available, although I appreciate your comments re funding. I guess those of us who are under the care of proactive consultants who have worked hard to build up an excellent cf/pcd/bronchiectasis unit and team and fight for funding are lucky. I can understand some reluctance on the med side from small local hospitals but the larger hospitals should do better to fight for funding and proactively work towards building up good practice. Patients fighting their corner, as you have done for dear E on many many occasions can only be positive. It shouldn’t be a post code lottery.

Love to you both

Cx