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Withdrawal of oxygen therapy - Carers UK Forum

Withdrawal of oxygen therapy

For issues related to specific conditions and disabilities.
My wife has multiple chronic health problems including severe chronic asthma. This resulted in several emergency admissions to hospital before her consultant at the time (over 20 years ago) came up with a combination of treatments - including having oxygen at home - which helped her to control her condition. She has now been told that new guidelines have been introduced and that she no longer meets the criteria for receiving oxygen at home. She currently uses oxygen every night and is unable to have a comfortable night's sleep without it. She is also, understandably, concerned that removal of this treatment will, once again, result in episodes where she will require to be admitted to hospital for emergency treatment. These concerns have been raised with the consultant who is threatening to withdraw this treatment, but he has not been sympathetic to her situation. Has anyone else been through a similar situation where a treatment has been changed or removed against the wishes of the patient? If so, what can be done to deal with such a situation?
Hmm, are these new criteria medical or financial?!!!! One suspects the latter. ie, supply oxygen is obviously a cost, so the NHS may be cutting back on it to save money.

It will be hard to prove, however, as the mantra of the NHS is that 'if the treatment is medically necessary it will be provided'....now, since we know perfectly well that that is not true - ie, that a lot of decisions are taken for financial reasons - the NHS gets involved in Orwellian 'Doublethink' - it has to 'pretend' or 'claim' that there are MEDICAL reasons for not funding the treatment.

Consultants 'have' to go along with this. At least 'officially'. 'Unofficially' many have found 'workarounds' to manage to swing the OK for treatments by various 'devious' means (this happens a lot in Cancerworld which I am sadly familiar with!)

SO, the way to find out, I suspect, of these changed criteria are really medical (and they might be - we know from the press how the docs 'change their minds' in the 'light of new evidence' etc about all sorts of things, and in a way this is perfectly acceptable as research throws up new findings etcetc).....but in your case I would get in touch with whatever pressure groups and charities exist for your wife's condition, and see what THEY think.

You may well find they are 'up in arms' about these 'new criteria', and that will give you some clout for insisting that your wife gets her oxygen.

Another possibility might be simply to change consultants! From what I've learned in Cancerworld, every NHS patient has the legal right to demand a second opinion, find an alternative consultant. So it could be, for example, that another consultant at another hospital may think differently about whether your wife medically needs oxygen - or they may, for example, be more canny when it comes to the 'work arounds' to 'swing' the oxygen permission. Or they may come up with an 'overdiagnosis' for your wife that suddenly, and conveniently, puts her back into the new criteria range....

Finally, IF you can afford it (and it would cost about £150 on average in my experience), you might want to consult a different consultant privately.

Again, whilst 'officially' the NHS is supposed to fund ALL 'medically necessary treatemnts' nevertheless we all know that we can get things 'privately' that we are prepared to pay for, that are not 'availalbe' on the NHS. It could be, for example, that a privately-paid consultant would find no objection in prescribing oxygen to your wife 'just in case' etc. However, whether you would then be able to get the oxygen yourself on the NHS or have to pay for it, I don't know.

one final though - bit iffy this one! - but, would a diving school, say, be able to sell your wife an oxygen tank? That said, there maybe very strict safeguarding restrictions on oxygen availablility beause of the potential fire/safety risk etc etc. But it was just a thought!

The bottom line is - if there is no actual HARM that oxygen can do your wife, then the risk of 'over-prescribing' does not exist. Has her consultant ever told her that it has a downside? (eg, I don't know, makes her red blood cells 'lazy' for example or whatever as they 'have it easy' with oxygen???)

I do think, though, that your first step is to contact the pressure groups, forums/ charities of asthma patients, and find out what is going on, and why, and what other patients are doing to resolve this situation.

Trouble is, I do know, from my own asthmatic nephew, that 'fear and panic' can induce or exacerbate attacks, and maybe part of the therapeutic role of having oxygen on hand is simply that it reduces that level of fear and panic in the first place. Patients know that 'if things get bad' they can reach for the oxygen, and that may calm them sufficiently to make breathing that much easier so they don't actually need it at all????
Another thought - speaking of how fear and panic can exacerbate asthma, would it help at al if she were prescribed some low-dose 'calmers' such as diazepam (my fave!) - it's a muscle relaxant too, which possibly helps in asthma?????

Again, just a thought!
Thanks for your comments Jenny. There's no doubt there's a large cost element at play here, but we seem to be facing a level of intransigence and lack of sensitivity that we have rarely come across in the NHS before. The way the Government has changed things in the NHS is undoubtedly a big factor - most of my wife's treatments are dealt with by one health trust, but responsibility for her asthma (and prescription of the oxygen and therefore the cost of her treatment) has been transferred to another area. Whilst the original area was happy that her condition was relatively stable and seemed to be following the old adage 'if it ain't broke, don't fix it', the consultant in the 'new' area seem to be determined to remove the treatment and save the cost to the NHS, whatever the cost to the patient, and without reference to the records of the past 20+ years held by the other trust!
I've looked at some asthma / COPD sites to see if anyone else has been through this process, but so far without success. I'm getting the impression that different NHS trusts are taking different approaches to this and that we seem to have been unlucky to be assigned to one of the worst, or maybe just a very insensitive consultant! Fortunately we have a very good GP (who used to be responsible for prescribing oxygen until the Govt changed the system!) and we hope he will support us in our fight with the consultant.
Thanks again for your helpful suggestions.
Old thread, locked, usual reason.