Old un needing advice: Despite having... - Asthma UK communi...

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Old un needing advice

Anniecath profile image

Despite having had asthma nearly all my life (I am 67 year old female) I have never seen a consultant. I am under constant pressure to change my medication when I can, mostly, do what I want to do. Am I within my rights to request to see an asthma consultant, bearing in mind I live in the far west of cornwall where asthma expertise seems to be thin on the ground ?

23 Replies

Most asthma can be well managed at GP level and doesn't need to managed by a consultant. If you don't feel your asthma is controlled you can certainly ask your GP to refer you but I guess if they don't feel this is needed then at the moment it might not happen, given there will be many people waiting for referrals who do need them. If you do need a referral then your GP should refer you so you can join the list of course.

Anniecath profile image
Anniecath in reply to twinkly29

Most GPs are not expertise or even "have an interest" in asthma. I am asking the question because in previous GP surgery had excellent treatment and advice from a fully qualified asthma nurse. At present am under the care of nurses who "have an interest" in asthma. Not the same thing, surely.

twinkly29 profile image
twinkly29 in reply to Anniecath

GPs should be perfectly able to manage asthma that is controllable at primary care level - whether they do manage it is another matter. If asthma isn't controlled at that level then further expertise would be needed. Same with nurses - and I agree that not all "asthma nurses" are trained in asthma.

But it goes back to control. If someone's asthma is controlled then it's controlled and doesn't need expertise beyond that. If it's not then yes absolutely it does warrant it. If you feel your asthma needs more control (equally if you are not happy with your particular GP/surgery in dealing with it) you should definitely ask for a referral.

Anniecath profile image
Anniecath in reply to twinkly29

Hi Twinkly, maybe I should have given more context to my question. As I was born in '54 and I had either infantile exzema or asthma, so was either itching and bleeding or coughing and wheezing, and the only treatment they gave me then was tranquillisers so at the grand old age of 3-4yrs old I was as high as a kite. Following on I was on the wrong medication for years and so have permanent lung damage as a result. It wasn't until I was well into my thirties that I hiit a regime that worked and mostly still does work for me. I still need ventolin because there are so many triggers that I couldn't possibly avoid without living in a hermetically sealed unit. I suspect I have allergic asthma, but I don't know because I have never seen a specialist despite struggling at times. I am loathe to change medication as I am always pressured to do so, because I have had some quite scary side effects from previous attempts to change my medication. And last but not least being the age I am I am loathe to add any unwanted side effects to the list of horrors to do with ageing anyway. If it works, mostly, why change it is my motto.

twinkly29 profile image
twinkly29 in reply to Anniecath

In that case there's probably no point seeing a specialist because they will no doubt want to try other medication which you don't want to do - I understand that to a point but all medications have potential side effects - not guaranteed side effects - and those might be preferable to those ventolin can cause or the risk of less than well controlled asthma. It's entirely your choice and only you know you, so completely your decision (that sounds really offhand, sorry it's not meant to, I mean it genuinely!) but there's probably no point seeing a specialist if you don't want to change anything. On the other hand, if you were referred, it's ok to go and be upfront about fears about changing meds etc as hopefully then they'd work with you to find things to try that you're happy with and be understanding.

Anniecath profile image
Anniecath in reply to twinkly29

Hi Twinkly, I know I said I am loathe to change medication. In the past I have had palpitations and breathing problems as side effects. I have had the shakes and tremors whilst working as a goldsmith, not ideal. I would be more inclined to change if I could speak to an expert in his/her field. I have never had side effects from ventolin, qvar, serevent or montelucast. I feel that far too many GPs and nurses are following guidelines to the letter without recourse to common sense, and the acceptance that unlike tick box exercises not all asthmatics are the same. And as I said before, at my stage of life changes have to be on the good side if possible !

What medication are you on and how well controlled are you

Anniecath profile image
Anniecath in reply to Anselm198

Hi Anselm198. I am on Qvar, Serevent, Montelucast and Ventolin as rescue inhaler, which I need in hayfever season and autumn with mould spores around + weather temperature changes cleaning etc etc. I also take Beconase and eye drops in hayfever season + anti histamines if needed.

If you are well and your inhalers work for you tell them " why fix something thats not broken" Dont change unless its benefits you. Please dont be pressurised if you think a consultation will help ask and go on a waiting list. Good luck stay well xx

Anniecath profile image
Anniecath in reply to Spikedog66

Thank you Spikedog66. I feel I am starting from square one since I moved to Cornwall 10 years ago, having to reiterate every detail becomes tiring and tiresome. And I think I will push for a consultation with a specialist.

I’m a bit unsure of why you want to see a consultant? Is it to investigate your symptoms further? I completely understand your comments about Asthma Nurses not always being trained and GPs have an “interest” and others not. Also the “tick box” game that you play when at an asthma review. Not really helpful to the patient but it looks good on the computer! I wonder if a chest physio and/or speech and language might be helpful for you to teach some techniques that help with breathing and coughing? Especially if you are reluctant to change medication? These days, GPs and for that matter, all doctors, are there to dish out medication and fiddle about with it. They are not all as holistic as they used to be so they do tend to focus on medication first and foremost. If you have a gut feeling that a referral to a consultant would help, then ask for it. Do a bit of research on asthma and airways consultants as of course, they will vary too. There are consultants who have “interests” in different areas of asthma because it isn’t a simple condition. It has lots of different presentations and causes, as you know. Good luck.

Hi Its wonderful. Ifind my back against a brick wall. I am constantly being pressured to change medication, more I suspect as a financial exercise than something that would be of help to me. That is the main reason for my feeling uneasy with the present situation.

It’s a difficult one really, because there are often criteria that need to be met for a referral and they can be rejected if they’re not met.

I know that there is a wide variety in the expertise etc of GPs and practice nurses (as in every job!) but the majority of them are more than capable of managing most asthmatics. GPs have to know the management of so many different conditions and rarely require specialist input to help - within a half day list of appointments they’ll often go from asthma, to a virus, to mental health, to social care, to concerned parents, to urgent cancer referrals and lots more. The one good thing as well is that as asthma is very common in the population most will have a fairly good amount of experience dealing with it.

That being said, if you are having issues with not being controlled on your current meds then a referral may well be what you need, particularly if you have tried a lot of medications before and not got on with them. It’s probably worth trying to get a GP appointment first to discuss all your concerns because they may well be able to help reassure you, and if not then they’ll be able to sort out the next steps that are needed. 😊

twinkly29 profile image
twinkly29 in reply to Js706

Yes I imagine GPs must actually be font of much knowledge as GP is a specialism in its own right.

Anniecath profile image
Anniecath in reply to Js706

Thank you Js706. I think a surgery repeatedly refusing repeat prescription for ventolin via receptionist then backing down when I ring and reiterate why I need it is not good practice. I think I will put everything down in writing and request a GP appointment (not likely).

Hi, Have you asked why they want to change your medication? When serevent was introduced ( it’s a long acting beta agonist) it was not known that if taken without inhaled steroids it could be dangerous for some people. That was not a problem for most people as it was usually added in after you were already on inhaled steroids( eg Quar). Nowadays doctors prescribe combined inhalers like seretide or fostair which are safer. I expect your doctors/ nurses are trying to give you a more up to date combined preparation which is safer. It’s unlikely to be any problem for you as you are on Quar, but if that is why they want to you change them there is a good reason behind it.

Anniecath profile image
Anniecath in reply to dicof

I take Serevent and Qvar and never had a problem with either. I tried combined inhaler and thought I was going to die, palpitations and difficulty with breathing.

twinkly29 profile image
twinkly29 in reply to Anniecath

Apologies if you know all this but such symptoms, particularly the palpitations, are very common when starting a combi inhaler but usually diminish/disappear over the time the inhaler kicks in. The kicking in period is about 8 weeks (although side effects usually go more quickly than that) which is why such meds need a fair crack to see if they're the right ones frustrating but necessary process).

If the steroid base in a new inhaler is different to the one in a new inhaler then symptoms such as shortness of breath, tightness etc can feel worse initially because the new steroid needs to build up - again this should ease over the kicking in time and the LABA (long-acting bronchodilator) will help by doing the job of regular ventolin during this time (but doing it better actually because it's long-acting).

Additionally anxiety can cause those exact symptoms as well (palpitations, breathlessness and feeling of dying) which would be quite understandable if one suddenly had those symptoms. They may indeed be initially caused by inhaler change/adjustment but then anxiety can jump in and cause the same symptoms but one assumes it's the meds - however the symptoms are then self perpetuating (or can be) with anxiety after the meds reaction has finished.

Another thought is that while a change in steroid base might cause "worse asthma" feelings during the adjustment period, the palpitations would be caused by the LABA. You're on a LABA already with the serevent so it's not clearly all LABAs that are possibly the problem (possibly because it may be that any will have initial side effects that stop happening once the body adjusts). So.... it might be a case of either working through side effects or finding the right combination for you. If you chose to try other meds that is.

The reason they may want to change is because the way it was done for many years, to rely on ventolin/salbutamol, is no longer deemed safe - rather than it being to do with cost. Interestingly Asthma UK have got a current campaign if you like explaining exactly this. So with there being chunks of time where you do need more ventolin than is ideal, they'd want to make sure your preventer treatment was optimised.

I'm not sure which one you tried before but Fostair has the same steroid as is in Qvar but a different LABA and Seretide has the same LABA as your Serevent but a different steroid base to the Qvar. So if you're able to have a conversation with a GP or nurse regarding your inhalers, sometimes going with a vague idea of options can help. Eg you might be able to say "I'd rather keep the LABA the same and try Seretide" on the understanding you'd have about 8 weeks for the new steroid to kick in....or "I'd prefer to keep my steroid the same and change LABA so would be happy to try Fostair", knowing that you might (and you might not!) have a couple of weeks of side effects from the new LABA.

Alternatively, you could ask them to try increasing your Qvar dose (if you're not already on the max for that) as technically you're on both elements of a combination inhaler, just not actually combined and although it's not as controlled as it might be, it doesn't sound hideously uncontrolled.

Sorry that was really long - mainly just thinking out loud with info/ways forward for you! One thing if you do decide to try a different inhaler would be to ask explicitly at what point (in terms of peak flow/symptoms) you get in touch during a switchover - eg , if you need something to help with that adjustment period. You may not at all but knowing what to do can help the feelings of "this isn't fun" and they don't always think to tell people!

Anniecath profile image
Anniecath in reply to twinkly29

Thanks for that twinkly29. As a long time asthma sufferer I am awre of all these. I have been on so many different combinations over my lifetime. The ventolin I only use when I start wheezing or if I am struggling to breathe, not all the time by any means. And I up my preventive inhalers when the seasons deem it necessary. Ventolin is a lifesafer, it is fast acting and can stop a full blown asthma attack in its tracks.

twinkly29 profile image
twinkly29 in reply to Anniecath

Yes absolutely that's the job of ventolin and of course someone should use it if they need it - but if they're needing it more than 3 times a week then the idea is preventative meds are not sufficient.

However, it doesn't sound like you are needing ventolin this much generally speaking (and even the most well controlled will have blips where they encounter a trigger) - so if pushed to change meds for a control reason I think I'd ask about increasing the Qvar a bit (as in routinely not just for a few days while unwell) as it sounds like you're pretty controlled and it's tweaking rather than a disruptive change that would be needed - if anything at all! I can see why you wouldn't want to upend what does work!

Anniecath profile image
Anniecath in reply to twinkly29

Hi twinkly29. Yes, I think you've hit the nail on the head. But if pushed I will ask for a second opinion. I always feel pushed into a corner and having to justify why I need a lifesaver feels a bit much ! Many thanks for your input.

If you have asthma and eczema, do you also have allergies? I'm same vintage as you, and allergies drive my life - the only asthma med I can take is ventolin. Some GPs lately are apparently trying to stop folks getting ventolin - is it expensive? I tried, with a consultant, various different preventer meds, in hospital setting with a nurse watching to see if any allergy response. We found of the meds available at that point (a few years ago now) that the only one I was safe with was ventolin. Apparently there are various oils etc that are used in some medical preparations, even in an alternative to ventolin. One of which is apparently made from coconut or other nut oil - and as I have major nut allergies, this is a problem for me. But now with COVID and other stuff, I don't even get Asthma reviews. I just pray they will keep on providing my Ventolin, which I use quite a bit because of allergies, mostly.

Message is, be careful. Sometimes it's better NOT to have a consultant or asthma nurse... and yes, I do believe that at least with some of them the choice of meds recommended is financially driven.

Anniecath profile image
Anniecath in reply to Elspe

Hi Elspe, yes I'm allergic to ......I've lost count. I think its probably to do with age, ie bodies change over time, I seem to be getting more susceptible to certain triggers and ventolin stops it becoming a full blown attack. And its this that the medicos don't seem to understand. I have had so many bad side effects and am loathe to repeat the exercise ! Like you I struggle sometimes but not all the time. I have taken onboard what you have said about having a consultation with a specialist. As I have never had a definitive diagnosis as to what type of asthma I have, I thought it might help. I suspect that when we were diagnosed there were no such divisions, it was just asthma. Stay safe and thank you so much for your input.

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