My 92 year old Mum was diagnosed with Bronchiectasis last year after years of coughing. Xrays showed nothing but GP could hear a lung problem. Finally a scan diagnosed Bronchiectasis. That is about it. Given a name of the condition but no referral to physio or advice how to manage. She did get worse and went on carbosteine and 3 antibiotics a week but seemed to have a reaction to them. She was taken from these and given an inhaler which she struggles to use. My sister and I care for her but have both got Covid this week and now have a friend going to her house to take a test for her.
She absolutely will refuse to go to hospital either way which I do understand at 92 when her quality of life and covid restrictions are poor.
I am therefore asking if anyone knows anything about oxygen ( her levels are 91) as her GP said he cannot prescribe it. Could it help her currently through a tough period assuming covid is negative. Who can I ask for help. Would she benefit from learning a technique to clear her lungs. Just struggling to know what to do or where to turn.
Any help hugely appreciated.
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JetJet
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Hello JetJet, I just wanted to say hi and I’m sure someone will be on soon to offer advice. This is a kind and caring forum so welcome to you. Sorry to hear about your dear mum and I hope she doesn’t have covid.
Wishing you and your sister a speedy recovery. Xxx
If your mum has the aerosol inhalers they’re hard to use. You need to ask her GP to prescribe a spacer. It makes it easier to get the full benefits of the inhalers. My respiratory team prescribed me an Acapella. You blow into it and somehow it loosens the mucus from your best.I take 2 different antibiotics on alternate days( prescribed by consultant)
Perhaps they could try your mum on 2 antibiotics and start them gradually I’m on Axithromycin and cotrixame on alternate days. It’s keeps me stable, which is the best I can hope for.
Oxygen has to be prescribed by a consultant, there’s no 2 thing that makes a difference, it’s usually lots of little things that come together to make a difference I hope your mum gets some teliefyfrom her symptoms and that you and your sister recover from Covid quickly . Take care
If difficult to get a spacer from the gp you can buy them from a chemist about £8 maximum. There are demonstrations on youtube. The beauty of them is that you can leave the inhaler in the spacer, use 2 hands to squeeze the little aerosol and then place the spacer mouthpiece in mouth and take several breaths to get the medication. What colour is the inhaler?
I do hope you and your sister get better soon without severe symptoms. P
Hi Peege, she does have a spacer but still struggles to press the inhaler button and then it triggers a cough and she removes mask. We keep trying to rectify! I think the inhaler is blue.....is is salbutamol???? Do you actually feel a difference when you take it? If I can explain that people really do benefit she may be encouraged to try..she just thinks her girls nag!
Ah, it's what I thought, the blue rescue inhaler which is to relieve shortness of breath for a short time (could be 5 hours but have to check the leaflet) that's if it can be inhaled properly. Im surprised she's not on a 2x daily preventer inhaler. Its quite hard for an able bodied person to coordinate well enough to use an inhaler with or without spacer. Yes i do feel a difference when using it, it opens the airways improving breathing. I'm often nagging my 83 year old neighbour ie when she feels better after taking antibiotics for 2 days she'll tell me she's better and doesn't need them any more grrrr. The N.I.C.E guidelines for bronchiectasis are to be referred to a consultant, see the respiratory nurse bi-anually and a prescription for a preventive antibiotic. I take mine on Mon, Wed & Fri November to April, some take them daily &/or year round.
The most important thing is to get mucus up & out of the lungs otherwise its a perfect environment for bacteria to grow causing infections. I'm mild so the Huffing technique is fine for me (youtube) & daily Carbocysteine (moistens the lung mucus).
Best wishes to you all. P xx
PS I believe O2 levels have to be under 90 before prescribed O2. Its not always straightforward ie if a person retains CO2 - carbon dioxide. I know little about it really. Useful tools are an oximeter £20 via amazon, mines a Biosync. They usually also read the pulse and a thermometer. A simple huffing would be to blow bubbles with a straw and glass of water.
You are all so amazing. So really I need to find a Bronchiectasis specialist and try and get a referral. Meanwhile to try and follow breathing techniques that she may be able to do. I wish I had been told all this at diagnosis! Thank you
I know, the NHS is brilliant but does have its draw backs in preventive help. Could she/you afford to go private? I imagine waiting time for referral is quite long. What you need is the right medical advice and prescriptions. You could try calling the wonderful BLF helpline office hours 03000 030555
If she wont go to hospital,u can read up on active cycle of breathing,and teach her how to do ths to clear mucous.its the best and most effective thing to do,at minimum of x2 a day
Just seen your PS....blowing bubbles with a straw would be perfect. So for how long would you do that and then is the aim to try and clear/cough up mucus? Once a day or twice a day.
Eek, I dont know! I've read on here in the past thats what some people do. I guess take in a big breath then blow through the straw in water for as long as possible then repeat until coughed up some phlegm. There may be a demo for it on youtube as well.
Thank you so much for that. I did see something called a flutter and a capella. So this helps you clear your lungs? Is low oxygen in Bronchiectasis 'normal'. She has never seen anyone other than GP..I am guessing referrals to respiratory specialists are unlikely now but happy to try anything. So you dont ever need oxygen? Sorry lots of questions! Thank you so much.
You could try putting the aerosol into the spacer before your mum puts it into her mouth.This might stop the cough as she will be breathing it in at her own pace.
If you look on the BLF Website.for breathing, Exercises it shows you breathing exercises to help clear the mucus
I am on oxygen,I’ve got a mobile concentrator.its a bit of a nightmare,to be honest.
It’s supposed to be portable, it I find it too heavy to carry around.it made my bad back a lot worse.the oxygen man gave us a cylinder trolley and my husband has managed to attach the concentrator to it.its ok,but ifI take it out,but have to wipe it down as it picks up mud etc when I’ve been for a walk.
I am u der the care of an Interstitial lung disease consultant and a rheumatologist,currently my appointments are on the phone.
The acapella you. Low into it at your own pace,it helps me loosen the mucus.even though I ha ent got bronchie tases the cold weather and central heating are ,I think what’s making the mucus thicker ?i Am sorry for lengthy post. I hope your mum feels a bit better soon.
So sorry to hear your mum is going through this. If she has a lot of mucus she would benefit from clearing her lungs daily. If you look on YouTube for active cycle of breathing there are some physios going through the process on there. Ideally she would see a specialist in Bronchiectasis at the hospital but clearly she doesn’t want to do this at the moment. Usually she would have carbocistene daily and some take antibiotics three times a week. It’s really important if she starts to feel unwell or the mucus is green that she gets a two week course of antibiotics to treat it. Most of us keep rescue antibiotics at home for such occasions but your mother may need some advice being so new to it. The BLF website has a lot of information on Bronchiectasis. But do come back and ask questions here as there are a lot that can offer good advice. I hope you and your sister get better soon. X
Sorry to hear of your situation. At 92, would your mother take on learning a technique to clear her lungs if she was referred to a respiratory physio I wonder. Something to consider. Also her GP should / can refer your mother for community care in her own home at this time. Important she stays hydrated - drinking plenty of water, but good luck with that aging parents often do precisely what they like regardless of what is good for them.
You could also chat with Adult care through your local council.
Regarding Oxygen levels if they are persistently low at 91 I feel she should be assessed.
On Monday you could contact the BLF helpline to see what they may suggest about your Mother's oxygen levels and care for your mother.
Your mother probably needs a full assessment at home so she can access fully her care needs.
I hope you can get something organised quickly and your mother can recover from her current struggles.
Do let us know how things turn out.
Take good care and wishing you and your sister a speedy recovery.
In less than 60 mins on this site I feel I have had so much help. Thank you. My Mum says she is fine despite the fact she cant get out of bed...she doesnt like to 'make a fuss' . Covid just makes everything more scary. I will make some calls tmrw and see what community facilities are still operating.
If the clearing techniques are not too hard and help then I think we could convince her to try.
There are some videos on YouTube with various techniques to help clear lungs of Mucus. Huff cough etc. They take a bit of practice but could help your mother. My mother is the same age and know how independent they want to be.
Hi, I have bronchiectasis and severe arthritis in in my hands. I found it very difficult to use my Ventolin in the spacer. I was told about a small device into which the Ventolin fits. This then fits into the spacer and I have to just squeeze the device, easy. Unfortunately I cannot remember what it is called but someone here would know what I am talking about. Hope that helps!
Two most important things.1 clearing the lungs, by breathing tecniques, help from flutter devices, nebulising saline or taking carbocystein. Tiring and tedious but absolutely essential.
2 the right antibiotic in sufficient dose for at least two weeks to knock any infection on the head. Azithromycin, the antibiotic prescribed long term three times a week is not necessarily good against the bacteria which is in her lungs and some people can’t tolerate it. ( best to take it with food)
She needs a good bronchiectasis specialist which is difficult during this pandemic so it would be a good idea for her GP to send off a sputum sample to determine which bacteria is in there and the best antibiotic to take.
She has never been asked for a sputum test before so I will do that. thank you. She has had so many antibiotics for chest infections and UTIs and never seems to do much. Out of the 3 clearing techniques/help which would you think may be easier for her age group...everything is an effort so the easiest is good if still effective. Just frustrated that I feel we are a year behind in terms of good advice. Guess not the greatest year for referrals! Many thanks indeed.
I’m afraid that all advice for bronch is dire to non existant. The idea is to loosen and move the mucus in as gentle a way as possible and then to just cough it out. I guess that your Mum is quite fragile. The active cycle of breathing is good and gentle and we adapt it to ourselves. Some find carbocysteine very useful but it makes me feel sick. A talk to the GP now to have a sputum test done to find out if there is a better antibiotic for now and asking for isotonic saline to nebulise twice each day. This loosens the mucus gently. You may have to buy your own nebuliser.In the mean time look at big teaching hospitals near you and find the name of a bronchiectasis specialist. Not a general respiratory consultant. They know very little about bronch and tend to treat it like copd when it needs very different management. Take the name to the GP for a referral and don’t take no for an answer. The specialist will test the sputum at every visit, know which treatment methods to use, have their own physiotherapist to help your Mum and access to all the facilities of a large hospital.
My relationship is with my specialist through her secretary, not with my GP who happily gives me what the con decides.
Your Mum has probably been struggling with a level of bronch for some time and if it is managed properly her quality of life can hopefully improve. Good luck.
That is amazing advice, thank you. She is frail and frustrated. She was a PE teacher and loved sport and played golf until well into her 80s. It is only recently that I realised what she has....I was told over the phone and took it down as another condition! I have been researching what I can and keep coming across clearing techniques . All of you on here clearly recommend them. Thank you again
Hi, Sorry to hear you Mum has been diagnosed with bronch. If it were me I would be looking up a resp consultant who has a special interest in cf/pcd or non cf bronchiectasis and contacting them, just to get the nod for acceptance for when the covid situation improves.
I appreciate you want thee easiest method of lung clearance which your Mum would accept and comply with.
Here is a link from a reputable site I was involved with. There is a lot of info on there, some you can skip over for the time-being but there are videos on lung clearance and gadgets such as the flutter and the Acapella Choice, showing you how to do them. You can get the flutter or the Acapella on prescription from you GP but not many seem to know that.
If the only way you can get a gadget is to buy one, which shouldn’t be the case, but if it is make sure you ask about Medical VAT Exemption.
Your Mum might find nebulising her bronchodiator (the blue salbutamol) easier as she would just have to sit with a mask or mouthpiece until it has run through, instead of faffing with a difficult to use inhaler - about 5 mins and she could follow that with saline prescribed
You are all so amazing on here. So is oxygen therapy used much in Bronchiectasis or not really? I think she is currently going through a bad breathless patch on top of UTI and is not being able to help. Lying in bed seems to be her safe place for now.
If we can get her back up we will do everything you all suggest.
We are in Herts/Beds if anyone has any knowledge of specialists around here. As we can not care for her for another 5 days we have managed a community nurse to start from tmrw...maybe they will contact GP and suggest further help.
The closest hospital is Lister in Stevenage or QE11 in Welwyn Garden or Bedford. There is also a private hospital Pinehills in Hitchin. If anyone knows anyone at these...
Great you have arranged a community nurse. It would be best to discuss with her/him re 02. I know some bronchs who use 02 and many many who don’t. We can only speak from vast experience but only a medic could really answer if it would be of benefit to your Mum.
Ouch! UTIs are nasty. You are right to try and get your Mum out of bed. Even a small amount of moving about will all help to move secretions.
Oh my goodness my heart goes out to you. When l was diagnosed the first thing they did was organise home oxygen and it has been a life saver. Please push for it as your mum would feel so much better.Also with bronchiectasis the importance of chest clearance can not be over emphasised and once given instructions your mum will be able to do this herself giving her a bit of control and independence back. I wish you well
Hello Jetjet I am a bronch sufferer too and I really feel for your Mum. I found this site when I was first diagnosed and wow have I got some tips from here. Apart from everyone being so nice and helpful. I knew nothing about it. There are many helpful links which you can get from members of this site. I think that the links to help your Mum bring up her mucus should help her and I have recently bought a nebuliser and the consultant prescribed the saline nebules. They probably would have given me one but with COVID I wanted to buy my own. In the meantime you can buy it all on Amazon I think the machine was £60 and one box of nebules £6.55. I am prescribed to take 2x 2.5 4 times a day so it would benefit you to see a consultant who could instruct her GP to prescribe it. There are many long term suffers on this site so they have a wealth of knowledge. I take azithromycin which does sometimes upset my stomach but I have found if I take it an hour before food I can sort of tolerate it. Carbocisteine also does something to my stomach which I only take when I am unwell. I wish you luck and keep us posted of how you get on and hope you both get over COVID quickly x
Oxygen won’t help - she needs to get the mucous up & out. A cappella is device that can help, as can the huff technique she can be taught & anecdotally a lot of folk with brochiectasis say voiced fricatives help clear & produce productive coughing - find them on the singing for breathing cd which can be downloaded/streamed or purchased the musical breath.com as well as a list of online groups she can join if someone can help her get onto zoom or just have a sing with her to get things moving! Remember for your reassurance that breathlessness itself is not dangerous but can be as disconcerting for relatives as it is for those with the lung condition. In her case the coughing is a way for the body trying to clear mucous from her airways. Lots of brilliant folk on here will advise & reassure. Good luck
I assume that 92 is her oxygen saturation if it is from what I understand she doesn’t need oxygen therapy as it’s above be 90.
I think it’s hard to diagnose bronchietasis as I also have it too. I had a persistent cough most of my adult life going back and forth to gp. It was only being seen by a hospital specialist that it was eventually diagnosed. I was given a gadget by Practice nurse to attach my inhalers to which might help you mum.
As for the huffing technique I was taught the following. (Huffing is like the action you take when breathing on your spectacles before cleaning the lens with a super. It is NOT coughing) the1. Take a long deep breath and breathe out slowly.
2. Then do a little "huff"
3. Take another deep breath and slowly breathe out.
4. Repeat the "huff"
5. Continue this rotation but each time increase the force of the "huff". If this process is effective you will hear a "cackle" in your throat.
6) when you hear a cackle in your throat then activate a FULL HUFF to eject the mucous. Recommended twice a day.
I think a member has said this technique is on YouTube . (I had all this printed out on a leaflet.)
My wife has Bronchi and has Azithromycin 3 times per week plus physio 3 times per week. In fact physio has just left. These are unless I`m mistaken the only treatments that are effective. We live in France so physio not a problem. Carbosystene does not make much difference with Bronchi it is the physio that has the greatest effect. If your mum is able to walk then as much exercise as she can manage will help. We bought 2 mini-wire dachshunds to ensure that wife goes out at least 3x per day for a walk. She puffs and pants up the hill where we live but the exercise does make her lungs work. Good luck, try to get your GP to look into physio.
Hi JetJet Sorry to hear you’re in this difficult situation and hope you and your sister are doing well. I just wanted to say as someone has already mentioned that oxygen levels are not the be all and end all. My husband is oxygen sensitive ( ie he is unable to clear enough co2 from his lungs when on supplementary oxygen ) so acceptable levels for him are 88-92 . He had pulmonary physio awhile back but I doubt at 92 your mum would persevere with the breathing cycle he was shown What he does do which he finds beneficial is lean forward in his chair and breathe out as hard as he can several times ( huffing) taking time to really empty the lungs This usually does the trick Good luck
I used to work in a care home and we wouldn’t have got a GP out for a 92 year old with a reading of 91 My husband can go down to low eighties if he exerts himself so uses oxygen at a very low rate to get it up again but never goes over 90-91 It must be very worrying for you , it’s so difficult when first diagnosed and not enough info even in better times than these but try not to worry and make yourself worse Look after yourself and hopefully you will be able to see your mum soon. In my experience her generation are tough as old boots 😃xx
Hi, does your mum have a nebuliser? If she does I have been told to take ventolin, then use Saline nebule through your nebuliser when that is finished I then take my Fostair inhaler before using my AerobiKA in order to bring up the muck. You can get a nebuliser on loan from your doctor or hospital if you need one. All meds can be given by your GP. Good luck. Forgot to say you can get ventolin in neblit form from your GP if it is easier for you mum to take. All she. Has to do is sit back and try to relax while the nebuliser does the work for her. Good luck.
You've already been given great advice by others so I'll try not to repeat it, but there was just something I wanted to say about using the inhaler.
Speaking from my own experience (I have COPD, asthma and bronchiectasis, by the way), over a good number of years, I have been given three different spacers for use with the inhaler. The first and second required me to breath in at the same time as pressing the top of the inhaler twice, then hold my breath for so many seconds, breathe out and repeat. Not easy if you need two hands to push the top of the inhaler and even harder if you can't hold your breath!
My most recent - and most successful - is made for use with 'tidal breathing'. That means, I can 'load' the spacer from the inhaler (all 4 puffs at once) then breath in and out for the required number of times without taking the spacer out of my mouth and without needing to hold my breath. The spacer is the blue AeroChamber plus Flow-Vu. It says it is an 'anti-static valved holding chamber' ie, it has a little valve on the top which is what allows you to breathe in and out without taking it out of your mouth.
I was prescribed mine by my respiratory nurse at the doctors surgery.
I think you can find YouTube demonstrations of tidal breathing and proper use of the inhaler.
One last thing, I have had repeated infections with bronchiectasis and am usually given amoxycillin or doxycycline for them. When I had a uti at the same time, I was given a different antibiotic as the GP said it would be good for both things and it was like magic! It cleared both infections and I was then infection free for nearly a year. I had a similar experience with repeat infections this autumn and after the first two antibiotics were tried and failed to shift it, I was given clarithromycin which worked like a dream. Just saying that not all antibiotics work on all bugs, so sometimes a different one is required. This, of course, would be up to your mum's GP to sort out, but worth pestering them if a first course (should be 14 days) doesn't help. Sometimes steroids are given alongside the antibiotics or on their own and can help with breathlessness, but for some, the side effects are too great.
Ok, that's me done! Haha! Hope you get your Mum sorted out ok. xx Moy
Amazing. Thank you. Do you use anything else like nebuliser or acapella. I feel she actually has no aids to help her as yes she has an inhaler but I am sure it is so ineffective because she is just unable to use it. Hold mask on, press button with arthritis, breath at right time when gasping for breath and then coughs and pulls mask off! I will ask for what you have! Do have daily meds? I cannot imagine how hard your combination of problems are. If she had been diagnosed earlier maybe she would have had a better ability to manage...BUT...never too late. Just wish I had done this 6 months ago. Nurses visiting and GP checking on her by phone so at least we know she is safer than yesterday! X
I do take other meds. I have two other inhalers that are harder to use. I think the one is for the COPD and the other one is for the asthma. I also take monkelukast which was also prescribed for the asthma but I think some people on here take it for other conditions. I believe it is meant to relieve inflammation in the airways.
I have recently been prescribed carbosisteine to thin the mucous and it seems to help.
I tried an accapella to help with mucous clearance but it doesn't seem effective for me.
Sometimes my husband helps me by patting my back quite forcefully but with a cupped hand. It would be good if a physio could show you how to do this for your mum. I can probably tolerate more force than your mother can so I wouldn't advise you to do it without being shown so that you would know how hard to pat. We are fortunate to have a family member who is a resp physio so she showed my husband the right technique. I just mentioned it here as information is power and the more you know, the more help you can ask for.
Has your mum been referred to the respiratory team? They are the people who can show you the various techniques and help you to work out a good plan to help you keep your mum as well as possible for as long as possible.😁
Its worth talking her into getting out of bed ea day,at least for a while as she will lose what strength and mobility she hass.it will also hell her breathing to be more upright in a chair x
Just had a thought-the Bubble Pep. It is designed for children but who says grown ups can’t have a bit of fun. Your Mum will probably need to be out of bed but with your help she might find it a more fun and less medical way of clearing some of the gunk.
Morning, started a long message but lost it! Your help is much appreciated ( everyone else too) . I have just spotted my daughters water bottle with incorporated straw! Perfect. Will sort that when I can get to her. So today's questions! Mum was taken of carbosteine and 3 weekly antibiotic after having a reaction to something which started around time of being on these. Do you think it is worth trying again. I am not sure we understood the importance of the clearing... my Mum sees it as an irritating and at times debilitating miserable headache inducing cough. I think we need to see it as a good thing but take control of it rather than it controlling her. So while I sit at home helping with home schooling and feeling so much better without spending hours shivering and feeling sick what is the 1 best thing I could look to buy to help Mum. I will request the inhaler style that was recommended that involves.ess coordination but if I were to look to buy something would it be an acapella? Are they all the same? Or Nebuliser ( what do you put in it). Or.a flutter?
Alongside these posts - and in the meantime, if you have any straws she could blow through these occasionally and us the old fashioned head over steam bowl (but not boiling as that can scold) or even a hot bath with steam (if you can manage those still). A respiratory consultant told me my elderly mum could do this before she was prescribed Carbosisteine, acalepa and Active cycle of Breathing - which I do with her morning, night and if her sats go down.
This may sound stupid but so that her lungs aren't being pressed, make sure she "opens her bowels - i.e. pooh!) or sits without pressing on her lungs.
Good point about using the loo. Also, small but frequent meals are better than large ones. I certainly get breathless if I eat too much or if I haven't been able to have my bowels open. Xx
Hello, Welcome to the forum. You've received an awful lot of good advice here and I can't add to it except to say that you need to experiment- we are all different. What suits one person does not suit another. I was diagnosed with bronch fairly recently ( Sept. 2019) and had a horrible, persistent chest infection last summer. My sats dropped to 90, but the medical people were reluctant to do anything, because of the covid risk. Sats gradually crept back up as I recovered. I was prescribed an AerobiKa, which I found brilliant for bringing up sputum.I hope your mum gets some relief SOON and that you and your sister get over the wretched covid quickly. Also of course that you mother doesn't get it. look after yourselves.
Hi JetJetYour mother's story about bronchiectasis seems to be like that of many others (me included) - long delay in getting correct diagnosis, antibiotics that don't work and lack of information about exercise & lung clearance.
All of these are covered, with many practical suggestions, in my book 'Bronchiectasis: Taming It & Feeling Better' - a snip at £7.99.
Her age of 91 shouldn't stop her doing gentle exercises; my dad was in my gym at 92!
Good luck in following up some of the advice you have received.
Hi JetJet and welcome to the site. Its such a worry for you dealing with an ageing parent and having covid it must be a nightmare for you. When I was diagnosed with bronchiectasis, you were more or less left to figure it out on your own, just like your mum. Thank goodness, I found this site, I have learned more from here than any doctor, nurse or hospital. You have been given good advice so I wont add anything, except to say good luck x Irene
Because I have a sinus problem and waiting a op, I use a daily nasal wash called Sterimar, I have an inhaler Seritide , NAC which thins the mucus a bit like Carbocisteine, drink plenty of water. I sometimes use an antihistamine to dry up the mucus if it is bad. We are all so different and alot of its trial and error to find out what is right for you. A childrens aerochamber maybe right for your mum, we had one for my grandson when he was small. The more information you have the better x
Hi, it's a minefield of information in the replies but all good all I can add is ### ask Yr G. P if your area has "hospital at home copd team" ###if not ask to b referred to a lung health specialist which unfortunately in covid times might take time.I've just got oxygen and from what I understand and feel when I put the oxygen on I don't get relief from feeling breathless, it just supply's my main organs oxygen. Whilst I'm poorly
Best advice lemsips plenty of tap water, eat little and often, huff and puff before u need to cough, its sound awful but my daughter says do a deep cowboy spit mum and she right, it's less stressful and it does come up which is very uncomfortable but if she can get a flutter device their great, sends vibrations done Yr chest pipes drink water when u use it.
Best of luck xx even if u can't see someone a talk on phone to a local c.o.p.d team to do a daily plan + Find what's best for Yr mum, good luck
Hello and welcome to the group. I have added some information for you in a link about bronchiectasis from our website. It may help answer some of your general questions about your Mum's condition. If you would like to have a chat with one of our nurses for advice, you are welcome to call on 03000 030 555 and we can arrange a call back.
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