Dealing with doctors/nurses and hospitals

For many of us asthmatics, this can be one of our biggest fears. When do we see a medical professional, when do we admit we are going downhil, when do we go to hospital? Deep down we all know the answers, but admitting it and acting on it can be a huge struggle. A lot of this is down to denial, we don’t want to accept that our Asthma is bad because that means we need to admit to being weak in some way, like we haven’t been able to deal with it ourselves and that we now worry about having to have time off work, others finding out we are struggling, going on more medication, worrying that the doctors will send us to hospital… there can be 100 things that run through our mind when our asthma starts to go downhil.

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Be Confident & Accept The Situations

I think the start to dealing with really being confident in knowing when to see a medical professional or go to hospital starts with accepting you have asthma. Hiding it doesn’t make it go away, and there should be no reason to hide it in the first place. Being confident in your asthma plan and that you know what to do and when. Then understanding your asthma, you understand you body and your asthma… seeing a medical professional is that much easier as you know what you need or you know when to ask for help. You know when you need to ask the doctors to do more, and you know when they aren’t doing enough.

I have found that for most of us, avoiding doctors etc starts with not accepting that our asthma is bad. When our loved ones ask us if we are okay, and we lie or downplay it. We get insecure about asthma making us look weak, so we hide it and try and deal with it ourselves. I asked many people who have asthma if they were guilty of this; hiding/downplaying their asthma when it was bad. Most agreed. It wasn’t something they were open about, they didn’t openly admit that they had asthma to most people, and when it was bad they rarely opened up at how bad it was. They often found that even simple things like using inhalers, they would do it in secret rather than out in public.

“Stay strong and positive – focus on what you CAN do, not what you CAN’T do.”

Take Control Of Your Health

Don’t be affraid on reading up on things or asking something. If you don’t understand something they have told you, ask.. find out.. get as much information as possible. Although be aware, if researching online not evrything is true. Don’t be nieve when it comes to your asthma and your treatment. Know what medications you are taking, what they do… Knowledge can be power. Sometimes doctors rely on us not knowing, not understanding and being nieve… so they can get away with doing less or just getting through stuff quicker. It’s far easier to have someone come in, give them a perscription and send them on their way. However, is that what you really need. Is that the best option? Is it the only option? Do you really need to have something else done… Take control! After all it’s your body, your health…

The Stigma

Having Asthma is still something that is very much hidden. Many people will think of some nerdy geek having an anxiety attack and using an inhaler when they think of someone with an asthma. Most don’t even know what it is, or what the symptoms are, that it can come in many different ways and what to do when someone is having an attack. In this day and age I find this appalling, however… I have realised that we are partially to blame because we feel self conscious about our asthma, we feel weak admitting we have it or when its bad and subsequently we hide it. We aren’t open about it, we aren’t proud of it and we are hardly open about it with even our loved ones. So, how can we expect people to understand asthma more, be more knowledgeable about it if there is still so much perception that we can’t admit and be honest… and open about asthma… Why shouldn’t we be open? It’s Asthma, it’s not some contagious embarresing disease… it’s just a reaction in our airways.

The Stigma that comes with asthma can be difficult to overcome. However, if we all were more open and honest about it, if we weren’t affraid to use our inhaler in public.. If when someone asked about our asthma we told them, if when we went away we easily told people that we have asthma and what to do in an emergency… just in case… Then all these little things would slowly start to help re-educate people; one person at a time. It would slowly make asthma seem less of mystery and a hidden illness and just something some people happen to have. Some people have brown hair, some have diabetes, some people are in a wheelchair… so what? Why does that matter or affect who they are.. It doesn’t. So we need to beat the stigma! Be proud to accept we have asthma. Being asthma makes us tough!

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When To Seek Help

A good Asthma plan should have this information on for you, and be personal to you. However, here is some general advise. If you are ever unsure, please just contact your doctor, 111 or 999 if you think it’s an emergency. Always better playing on the safe side and call for advise than not at all or leaving it too long.

When to have a review

Even if your asthma is well controlled and you have little to no symptoms it’s important to get yearly check ups at your doctor. Review your medications, how you are coping with your asthma, how your symptoms have been, how good/bad your peak flows are and just a general check up that everything is okay.

If you feel that your symptoms have been becoming more frequent, your inhalers aren’t as effective or you are using them more often, your peak flows are dropping-even if you feel well.

Regular asthma reviews are an important part of asthma management, and may help prevent asthma attacks in the future. (Asthma UK, 2016)

KEEP A SYMPTOM DIARY FOR A MONTH

It makes it easier to remember and give your GP or nurse an accurate picture. Every day, note how you feel, whether you’ve taken your medicines as prescribed, and whether you’ve noticed any triggers. Write down anything you think might be a symptom, even if you’re not sure – you’ll be able to discuss whether it’s connected to your asthma and what you can do about it (Asthma UK, 2016)

REMEMBER TO TAKE YOUR INHALER(S) AND SPACER TO THE APPOINTMENT, PLUS…
  • Your written asthma action plan.
  • Any questions you’ve prepared
  • A friend to take notes if that’s helpful
  • Anything requested by your GP or nurse in your appointment letter.  (Asthma UK, 2016)
DISCUSS ANY CONCERNS YOU HAVE ABOUT YOUR SYMPTOMS OR YOUR MEDICINE. 
BE HONEST!

If you keep forgetting to take your inhaler, or don’t take it because you’re worried about side effects, for example, be honest. Your GP or asthma nurse will want to find ways to support you. (Asthma UK, 2016)

CHECK YOU UNDERSTAND.

Ask questions to be sure you are clear.

TALK ABOUT YOUR LIFESTYLE

Lifestyle factors – such as being overweight or smoking – can make your asthma worse. Ask your GP or asthma nurse how you can make some changes to help your health. They can help you with weight loss and quitting smoking. (Asthma UK, 2016)

DISCUSS ALTERNATIVES

Be open about any complementary therapies you’ve been using, from herbs to acupuncture. Don’t worry about discussing this with your GP or asthma nurse. Sometimes complementary medicines can interfere with your treatment, so it’s vital your GP or asthma nurse knows if you’ve been taking anything else. (Asthma UK, 2016)

DON’T LEAVE YOUR REVIEW WITHOUT:
  • An updated written asthma action plan.
  • Answers to your questions and concerns.
  • Knowing what medicines to take and why.
  • Feeling confident you’re using your inhaler(s) and spacer in the right way.
  • Booking your next review. Ask if there’s a text or email reminder service. (Asthma UK, 2016)

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When to see your GP/Nurse

If you are ever thinking do you need to see your GP/doctor/Nurse, always air on side of caution. It’s their job, don’t feel like you are wasting their time. You are better going for a check up and everything being okay than leaving it and getting worse.

WITHIN 24 HOURS IF:
  • you’re using your reliever inhaler more than three times a week
  • your symptoms are getting worse
  • you’re off work or school because of your asthma
  • you have an asthma attack but don’t need to go to hospital. (Asthma UK, 2016)
WITHIN TWO WORKING DAYS IF:
  • you’ve had to go to hospital with an asthma attack. (Asthma UK, 2016)

If your asthma plan states you need to go to in, such as peak flow dropping, starting your rescue pack of steroids etc..

When to see your Respiratory doctor/Go to your Clinic/Get referred

If you are already under respiratory clinic/doctor this is an easier process. Quite often you will have regular reviews and appointments if you are already under them. However, if your asthma starts getting worse sometimes waiting another 4 weeks for your appointment isn’t practical. If you are able to, ring and ask for an earlier appointment and explain why. So if you feel your asthma is going downhil and are concerned but don’t think you can wait till your next appointment or you feel you may end up in hospital soon if you don’t improve then make the appointment. Sometimes they may be able to squeeze you in, others not. However, it’s worth trying.

Alternately, you may be able to get them to ring you back or speak to them and get advise over the phone until you can see them. Remember, it’s their job and you aren’t wasting their time. You are always better airing on the cautious side.

If you aren’t already under a respiratory consultant/clinic/specialist I would advise speaking to your regular doctor about referal. Even if your asthma is stable it’s good to have someone who has the specific knowledge get to know you when you are good AND bad. They may just make 6 monthly reviews, or monthly. However, it’s good to have a specialist that knows you. Doctors are great, but they aren’t specialists in respiratory medicine and I think it’s important to make sure you are getting the best possible health care for your asthma. You may only see them once, and they are only there for if your asthma gets worse after that point. However, the point will be that IF your asthma does get worse you are already under them and it’s easier to make an appointment than wait to be referred and then wait for appointment.

So whether your asthma is stable or getting worse, it’s important to have a go to specialist. If your asthma does start going downhill, your specialist is who is going to make the biggest difference. They will be able to do the specialist tests and investigations and just be able to go that one step further than doctors.

When to go to hospital

An asthma attack is an emergency. Getting treatment quickly could save your life.

Tragically, three people in the UK die from an asthma attack every day. Nearly half of people (45 per cent) die before emergency medical care can be provided. If you are having an asthma attack, you need to call an ambulance to get to A&E as soon as possible for the urgent treatment you need. (Asthma UK, 2016)

YOU NEED TO CALL AN AMBULANCE IF…

  • Your reliever isn’t helping
  • Your symptoms are getting worse (cough, breathlessness, wheeze or tight chest)
  • You’re too breathless or it’s difficult to speak, eat or sleep
  • You’re feeling exhausted (Asthma UK, 2016)

 

Download your asthma action plan here (adult) available from asthma UK

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Asthma Attacks

How can you tell if you are having an asthma attack?

You’re having an asthma attack if any of the following happens:

  • Your reliever isn’t helping or lasting over four hours
  • Your symptoms are getting worse (cough, breathlessness, wheeze or tight chest)
  • You’re too breathless or it’s difficult to speak, eat or sleep
  • Your breathing is getting faster and it feels like you can’t get your breath in properly
  • Don’t be afraid of causing a fuss, even at night.

If you go to A&E (Accident and Emergency) or are admitted to hospital, if possible take your written asthma action plan with you so staff can see details of your asthma medicines. (Asthma UK, 2016)

What to do in an asthma attack

  1. Sit up straight – don’t lie down. Try to keep calm.
  2. Take one puff of your reliever inhaler (usually blue) every 30-60 seconds, up to a maximum of 10 puffs.
  3. If you feel worse at any point while you’re using your inhaler or you don’t feel better after 10 puffs or you’re worried at any time, call 999 for an ambulance.
  4. If the ambulance is taking longer than 15 minutes you can repeat step 2.

(Asthma UK, 2016)

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Turning up to appointments

  • Take your asthma diary
  • Take the numbers for your last month of peak flows
  • Any recent discharge letters from hospitals or letters from specialists – don’t always assume they have them
  • List of any questions or concerns
  • List of any current medications (you would be surprised at how often their list is out of date even if you saw them last week)
  • Dates of any appointments coming up with other doctors/hospitals

Going to hospital

This can be very daunting, whether it’s by ambulance, or we are being taken in by family, or it’s just admitting our asthma has got to that stage it’s important to remember these things:

  • Whatever anxiety you may have about going, remember asthma kills
  • The sooner you go, the quicker you are treated and the quicker you can get home
  • You are more likely to have a shorter recovery when treated sooner before symptoms get worse
  • Not every situation is the same, you may have had horrible experience last time… that doesn’t mean it will happen again
  • Sometimes hospital is the best place to be
  • It’s not just us worrying about asthma, your family and friends will be worrying too. So If you don’t want to go for you, think about them and how it will affect them if you have a fatal asthma attack
  • Not all doctors are the same
  • Take a list of your medications as well as any medications you have
  • Your written asthma plan

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Sometimes, I have found it helps to have a piece of paper with my emergency info with my history on (document can be found on the Managing Asthma page) and what treatment works best for me. When you are breathless and struggling to speak it may be hard to explain all these things and not all asthmatics respond to the same treatments. Unffortunately, a lot of doctors treat many asthmatics as the same. However, I have found that by telling them what works best for me it seems to speed the process when I have the treatment that is specific to me. Yes many doctors will think they know best, but one in a few doctors will listen to you and it’s always worth trying. Or at the very least if there is stuff you have found makes things worse tell them.

For me, I can be very slow to respond to treatment in a severe attack so they may be very quick to work up their asthma treatment scale and throw loads of medications at me very quickly. However, knowing that i’m slow to respond and just giving me time I do improve just at a slower pace means i’m not over medicated too soon and they don’t panic quite so much that something isn’t working so i’m going to be unconscious any moment! Although, it is also important that they know I have history of previous ITU (Intensive care) admissions because they know that I can get life threatening asthma. For me, throwing loads of medications at me in a short time tends to just have me ending up really tachycardic (fast heart), anxious, and getting all the side affects from medications. Where as if they just give it a bit of time, monitor me closely and manage it accordingly I do improve without having to have quite so many side affects from over medicating. Which when severe and life threatening that amount of medication is necessary… But knowing more personal history on my asthma helps them treat me better leading to better recovery.

The other thing that can be important that they know is what kind of asthma you have, is it allergies that affect you, what allergies, do you have cough variant asthma, do you have brittle asthma. Some asthmatics also have different symptoms when in an attack, some can have a ‘silent chest’ so no typical asthma wheeze but still be having an asthma attack. It is important the doctor knows this.

Yes, some doctors will completely ignore most of what we tell them. Sometimes we my have to say it twice or make them listen. However, for those that do listen it’s better we tried and increased our chances of getting better treatment than to not try at all. This is the hard part of asthma. Realisticly not all doctors listen to us, not all doctors have good experience with asthma, some try to treat us all the same as if they are treating a text book, some may not do much at all. Don’t let this make you give up. Learn to speak up. even if you have to keep pointing at the page with this information with a stern look, or you have to write on a bit of paper to communicate if you are struggling to talk.. Try. try again if you have to.

It’s all well and good if i said that hospitals are magic, you can have an asthma attack and go in they fix you and you come home. I think knowing the truth, knowing what to expect and how best to prepare and deal with these situations is better. Yes, one doctor may be a bit rude and you may have the worst exerience ever but don’t let this put you off next time, not all doctors are the same. Not all doctors treat asthma the same way, just have patience that they are doing what they think is best and what they can to help you get better. If you have any suggestions or anything to say that you think may help better your treatment… SAY IT. Don’t get stressed or anxious. Just try to be open, if you think you need another nebulizer, ask. If you think that IV magnesium may help, ask. If you think you aren’t getting better or you feel worse… speak up. Don’t be afraid to take charge, it’s your health.

On a good note, yes there are many people who have had bad experiences in hospitals and going to hospital. The trick is don’t get stressed by it, stay as calm as you can. Know you are in the right place and just grin and bear any bad bits. I take headphones with me, stick my music on and just try to distract myself with that. Maybe play a game on your phone, distract yourself. Dont think about whats going on and your breathing. The more relaxed you can be the better it will be. So don’t worry about what they are or aren’t doing, try not to worry about your breathing. Just communicate with them when you need to and just wait it out and trust they will get you better. Just need to give it time. It can be very daunting not being able to breathe, it can make you want to panic and stress. Do everything you can to avoid feeling like this. Close your eyes, listen to music and zone away from your surroundings if you have to. These doctors have trained for many years to deal with situations just like this, and there are always other doctors around to help, there are always senior doctors to refer to if they need the help or you get worse. Just trust it will all work out eventually, stay positive and try not to get too stressed.

I have had many bad experiences with hospitals, but just as many if not more good ones. They have saved my life on many occasions, they have kept me going and listened to me when i’ve been upset or stressed. They have gone out of their way to help me and make sure i get treated well and to the best that they can. They’ve stayed hours past their shift ending just to treat me and make sure i’m okay. Don’t hold grudges over doctors or hospitals because no situation is ever the same and no doctor is ever the same. Just take things as they are and deal with them. They are there to make us better, that is their aim. Just trust in that!

Things to pack for an admission/going to hospital

  • medication and list of medications
  • previous admission letter/medical history letter
  • overnight bag just in case
  • book/ipad/headphones etc
  • asthma plan
  • emergency contacts

It’s better to have all this than need it and not have it.

 

Remember, stay calm and try to not worry!

You can overcome whatever life throws at you!

Remember to speak up when you need to.

Don’t be afraid to direct YOUR care.

Remember not all doctors/nurses are the same.

Don’t let anxiety and stress beat you!

Take notes/ask questions

 

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References:

Asthma UK (2016) Available at: https://www.asthma.org.uk [accessed 31/01/2017]

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