Every time I have to call the paramedics they all say that with all my lung problems why do I not have at least a nebulizer and oxygen back up. It is my obstinate specialist who says that people sit on nebulizers instead of going to A&E. you might overdose on oxygen. You might vomit into the mask and asphyxiate. He is totally against ventolin and tells his staff not to advocate ventolin {He is trying to stop the use of ventolin nation wide.
I was admitted to A&E yesterday and the doctor was going to prescribe ventolin for home use and when I said that my specialist and told him his name he just looked at me as much as to say that ??????? costing the NHS money again. If I moved 10mins down the road to the next town people with similar problems as myself get provided with a nebulizer etc.
Any comments please and give me some reaction with the general asthma community.
Having said all this it is the only problem that I have with the service I always receive from the NHS
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Wheesy
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Hi, I’m sorry your having a hard time with your specialist.
I have a couple of suggestions first being speak to PALs they can help you if you are unhappy and think you are not getting the best care, second ask for a second opinion you have every right to this if you feel your not getting the best care and your asthma is not under control. Third speak to your GP explain the situation and that you wish to have home nebuliser. You can buy them online or at most pharmacies, you just need the ventolin or whichever medication the GP thinks is best. Now to the home oxygen this is extremely hard to get for home use due to being flammable and expensive.
I have severe eosinophilic asthma and been under Brompton since I was 16 I’m now 37 and I still have managed to argue my way into getting any. (now on biological treatment for the second time)
I hope some of this helps and you sort out your issues with the specialist. Feel better.
I also have eosinophilic asthma along with asbestosis and 2 other chest problems. Thanks for the advise but my GP surgery say that any ventolin etc must be prescribed by a specialist, and as my specialist is one of the supposable best in England I have tried all routes availableBut I will try again and hope that I might get better relief from my lung problems. Do you find the biologics work for you as I am ill for a couple of days after my injection, at least I get 25 /26 days of better health
I think your gp surgery are not being helpful. Of course they can prescribe nebules for nebuliser. My surgery does and I am also under hospital. In fact it was previous gp who recommended me getting a nebuliser and for him to prescribe nebules because of crappy hospital treatment I was receiving. We also had full and frank discussions about when I needed to call for ambulance and not to wait too long.Having said this I don’t agree with concept of you having home oxygen as a back up. I believe that if your sats have dropped to extent you need oxygen then yes you should be calling 999. It is VERY easy from that situation to become extremely unwell very quickly and I think you could be at risk of needing help and being unable to call for it. Or waiting too long to call for an ambulance.
Hi so sorry you having a rough time. You can go out of your area for a different consultant... Your choice!! ask your Gp about this. Nebulisers can be bought very easy if you buy a plug in one you can get Vat off. I purchased a hand held one too not that expensive plug in about £40 upwards hand held £15 plus. Your Gp will prescribe salbutamol nebs I dont think you can buy this. No one will give you oxygen unless you are classed as terminal its too dangerous to much health and safety but this also can be purchased. A couple of salbutamol nebulisers ok at home but to be honest if this doesn't help your situation you do need outside intervention. Good luck to that consultant stopping ventolin he'd cause a nationwide riot!! If I can help in anyway let me know. Best wishes and good luck its terrible we have to fight to stay well and out of hospital. Xx
Many thanks for your replyI agree that this specialist is so adamant with the use of nebulizers, as I have written in my text that all his staff have been told not to recommend and he has given them an oral reply to patients. On my last visit to see him one of my superb asthma nurses told me that every patient that he has seen today has been taken off their ventolin and nebulizers changed their medication and given spacers for their medication. I am considering paying for a consultation and see what they have to say about my lung problems along with a few other problems especially the amount of drugs I have to take and then see what reaction I get from him, as he thinks he is the best in the world because he does research and is paid a lot of money for doing it.
Sorry for this long rant but I do feel a bit better after getting it of my chest
Hi Wheesy. So much for precision medicine and personalised therapy! I'm intrigued by your leading research consultant and it mirrors a consultant I came across about 2 years ago, except she was not the lead consultant. I had a very heated debate about Ventolin with her and she eventually conceded that I could carry it for emergency use only. 6 months later I saw the lead consultant and he was fine about using Ventolin when needed. The lady consultant had insisted that "no one was prescribing Ventolin anymore". Right! My lead consultant also leads on various research projects but so far the attitude has been to establish phenotype and then treat accordingly. There are definitely some hard core consultants that believe that Ventolin is bad, but I suspect their reasons vary. From trust concerns that their patients won't take their prevention medicine if they have Ventolin to a belief that Ventolin alters the lungs over time, causing the patient's asthma to worsen to the point where it becomes really difficult to treat.
There's no legal right to a second opinion but if you explain to your GP that you would like a different asthma consultant in a different area to review your case as your current consultant is automatically denying all patients access to Ventolin and nebuliser medicine, then they at least have to consideryour request on its merits. Also say that if he doesn't refer you then you'll have no other option but to seek a second opinion privately. This will underline how serious you are about your treatment, or lack thereof.
Of course you can complain to PALS but I doubt it would lead to your consultant changing their treatment. Maybe leave that particular powder dry until you get a second opinion. And I would highlight the number of A&E visits you've had as you have no access to a rescue medicine. With the decline in timely emergency responses it's important to have a home rescue plan in place while you wait for hospital based rescue treatment.
All the best whatever you decide to do. Keep us posted.
Good morning all. Wheesy, so sorry to hear what a hard time you are having. We would love to chat things through on the helpline with you - do give us a ring. Please call the helpline Monday to Friday during working hours on 0300 222 5800. Select option 3 to speak to a Respiratory Nurse Specialist.
Home nebulisers are a tricky subject. There are many people with asthma for whom nebulisers are not a good idea, as it can delay people getting to A&E for the urgent treatment they need. It's very much down to the individual person.
Nebulisers are not used to treat mild to moderate asthma symptoms at home. This is because the latest research shows using a blue reliever inhaler with a spacer is:
• just as effective
• just as easy
• cheaper
For most people with asthma, nebulisers are not recommended for treating asthma symptoms at home because:
• you might wait longer before getting medical help when your asthma symptoms are getting worse. This can be dangerous. If your asthma symptoms are getting worse, you need to seek medical attention straight away.
• it is hard to guarantee the quality of the nebuliser you buy
• all nebulisers need to be serviced regularly
• the mask and tubing used to deliver the medication to you grow bugs which can cause infection in your lungs
• your healthcare professional will not supply the medicines that go into the nebuliser unless there is a real clinical need over and above the need for inhalers
If you think you need to use a nebuliser at home to get your asthma symptoms under control, it may mean that your asthma isn’t well managed. Speak to your GP or asthma nurse who can suggest other ways to get on top of your symptoms.
If you do need to use a nebuliser at home, your GP or asthma nurse will recommend the right device and medicine to use in it for you.
This bit "If you think you need to use a nebuliser at home to get your asthma symptoms under control, it may mean that your asthma isn’t well managed. Speak to your GP or asthma nurse who can suggest other ways to get on top of your symptoms." is particularly important I think.
In such cases, GPs should be referring to a consultant not instigating nebs (or saying to ask the cons if the patient is under one already) as surely the idea is to optimise control and preventer meds, not just vent vent vent - as with the whole "seek a review, don't just chug away on your blue inhaler" thing.
Many thanks to Asthma Uk after a long conversation with an asthma nurse who gave me reassuring and advise as to what routes to take with regards my lung problems
Thanks for clarifying Naomi - very helpful to have the professional viewpoint!
Wheesy, I assume the consultant is specifically taking people off ventolin *nebulisers* not their inhalers, as he's giving out spacers? Denying Ventolin *inhalers* would be a really hard line position not currently recommended by guidelines, and while the ideal is of course not to need them, I'd say he needs a dose of reality if that's actually what he means - even the most well controlled person can encounter a trigger and need reliever!! I found your post a bit confusing about whether he is against all Ventolin or nebulisers specifically.
While his view on home nebulisers may be more hardline than some, I can understand why as there is a real risk that they will be misused.
This isn't always just patients either! Sometimes, medical staff who are less familiar with asthma (I believe home nebulisers are more common in COPD) may be inclined to discharge earlier if someone is on home nebulisers, and this is not always safe. I've heard of a number of examples of really poor advice around this along the lines of 'you have a home neb, go home and use it instead of coming here/staying in as long as we'd keep an asthmatic without a home neb'.
As Naomi and Twinkly have said, it's also important to optimise control, if you're often needing Ventolin. The answer is not to jump to getting a neb if you're needing a lot of reliever inhaler, but to work out why this is happening and as far as possible, make changes to preventer medications, even if this requires specialist referral (or further discussion about treatment if you're already under a specialist). Of course there are a small minority who really can't get their symptoms under control with currently available preventer medications, but even then it doesn't automatically mean a home neb is the best solution for everyone in this position. As mentioned by others, it can be very dangerous to rely on the neb instead of getting help.
I also don't think it's appropriate, if a consultant has explicitly said no to home nebs and explained why, for the GP to go against that and provide them. Perhaps different *in individual cases* if the consultant isn't specifically against them and doesn't have a position either way and there are other circumstances to consider, or in some cases if the hospital is very unhelpful/hands off or providing poor care. I don't however think that saying no to a home neb and home oxygen in itself constitutes poor care. (If anything, I have mostly heard about home nebs being prescribed to people who should not have them, against a background of shockingly poor care in other ways and with few to no sensible limits on their use).
Re the home oxygen: my understanding is that generally this is not even helpful, never mind safe, unless you have severely low blood oxygen levels (hypoxaemia) all the time at rest (as discussed at length in COPD guidelines, since people with COPD can have ongoing problems with low oxygen). Studies have shown supplemental oxygen isn't even helpful for people with COPD who desaturate only on exercise, or who have moderate hypoxaemia at rest. If you are an asthmatic with normal oxygen levels day to day, even if you desaturate in attacks, you do not need this at home. Oxygen isn't without its own risks if used inappropriately, and with asthma it isn't even a good idea to hang around at home using a sats probe and waiting for your oxygen to drop - you need to be heading to hospital before you're at the point of needing oxygen (see this post on sats probes at home: healthunlocked.com/asthmauk...
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