I get regular PM’s from people who are about to do the Difficult Asthma Protocol (DAP) at the Royal Brompton (RBH) and I thought it might be easier if I did post here and can point people to it I have looked through and these are the most common questions asked. This is not a definitive guide nor is it sanctioned or approved by the RBH it is simply based on my experiences and the experiences of others if anyone can see any glaring errors please let me know and if anyone can think of anything to add go right ahead. I have not talked about the tests themselves as there are so many they might do and they better explained by the people with medical knowledge.
• Can I take my mobile/computer/internet dongle/DSi etc?. Yes you can but be aware you are responsible for your property so maybe think about getting a lap top lock lead. Remember to be polite and that you will probably have roommates so keep the old ring tone volume down and if you want to chat to someone after 9pm check you are not going to disturb your roomies.
• When can people visit? RBH has open visiting so anytime between 8am and 8pm, they do have a hour at lunch (protected meal time) 12 noon till 1pm you can either take your visitor to the day room or downstairs to sit in the little garden.
• What can I do when I don’t have tests to while away the time? Read, use your PC, catch up on your blog or if the team give you the all clear go out and do some window shopping, but make sure you inform the staff and that if possible you leave a mobile phone number so if they need you back they can get hold of you, so don’t stray too far! I have been out for a meal in evening and have had a few little excursions.
• Do I stay in pyjamas or do you get “dressed� Most people get dressed even if it is day leisure wear type things, jogging bottoms and tee-shirt type thing are fine.
• I am needle phobic will there be lots of blood tests. Yes and no, there will probably be one big one but the phlebotomists are excellent and use the smallest needle they can, it is possible that based on one result they need to repeat a test or do a different one.
• Should I take my PF chart or should I start one. Yes big time a couple of week’s peak flow readings will be appreciated and helpful. Don’t go mad twice a day morning and night pre and post and if you have an attack or feel symptomatic then chart it.
• Is there somewhere I can meet a friend or get a coffee during the day? Yes there is a league of friends run coffee bar Monday to Friday or with permission pop out for an hour and find a little café
• Is there a shop and or trolley service? Yes there is a shop that has a few of each newspaper and other essentials it is only open Monday to Friday from 10am to about 4pm it is once again run by volunteers from the league of friends so yes things might cost a little more it is there for you and to help raise money for the RBH. There is also a trolley service on a Monday and Thusday evening , there very dear volunteer who brings it around is like old friend bless her and come rain, storm and snow she will be there with her trolley often at 9pm, she is most obliging and an absolute poppet.
• How long do the test results take to come through? As a general rule when the “asthma firm†sit down together to discuss your case later in the week they will have the results none of this waiting weeks.
• Why do I need to “come in for the tests? As I understand it they take a “snapshot†of your lungs etc gathering all the evidence at one time, instead of lung function at the local when you were feeling dire and 3 weeks later blood tests when you are feeling quite well. Also it gives them a chance to see how things are for you, go through inhaler and PF technique if you are always bad at night the nurses get a chance a chance to see how the attack responds to treatment, they will never put you in danger though their 1st priority will be to treat the attack.
• Knowing my luck it will be the one week in the year when I am feeling quite well so I will feel a fraud. Don’t worry there is no gold standard test for asthma the results of things like lung function will give them the information they need, you don’t need to drag yourself wheezing through doors, you won’t get brownie points for proving a wheeze.
• I have had a lot of the tests at my local do they need to do them again? Again getting a snapshot of things over a short period of time is much more helpful that tests that may be weeks or even months apart.
• They say I need to stop some of my medication for a day or 2 before some tests but I am worried doing that. Again they would never put you in any danger call and speak to them if you are worried.
• I have a special diet. Speak to the bed manager who will pass you on to the appropriate person
• Can I take my own nebuliser or do they provide one. Yes you can take your own or use a hospital one.
• I snore badly and am a bit embarrassed about disturbing everyone at night. A lot of us snore don’t worry about it, if you are likely to be disturbed by others take an MP3 player stick in the headphones and listen to music.
• I am MRSA positive. Call and speak to the bed manager about your MRSA status
• I have lots of questions will I get time to discuss them. Yes you will and don’t forget to note them down they really don’t mind. Sometimes a question you ask may well get them thinking and give them another clue as to what is going on.
• What sort of things will they ask me? All sorts of things from how your asthma affects your day to day life to family history they are all clues that you might not think are relevant but to them gives them vital information
• When do I get the results? There is a big ward round on a Friday usually just as your lunch arrives, it is then as your chips go cold they give their opinion. They may have some answers and ideas or they may decide that although your symptoms mimic asthma in fact you have something else or an additional under-lying problem. They may well want to do more tests possibly as an in patient or maybe as an out patient.
• I am really scared they will say I don’t have asthma it feels like I am going on trial. It is your body or specifically your lungs that are going on trial and we have little control over them. If you don’t have asthma that is great news but you would not be at the RBH if there were not a problem somewhere. It may mean you need to be handed over to a different team within the RBH who specialise in your condition. You are not on trial there people are some of the best in world they are looking for answers to your questions and ways to help you. People’s lives have been saved because the RBH recognised the problem which asthma meds were actually making worse.
• Please don’t bring flowers, spray deodorant, nail vanish ect in with you as your roomies might allergic to them and be a good patient ask before covering yourself in talc or opening that bag of peanuts
• Can I bring my mobility scooter/wheelchair Yes of course you can so long as it is designed to go inside please don’t try to bring one of those huge off road ones in with you.
• A list of all your current medications any medical allergies and any medication you have tried that has since been discontinued for whatever reason.
• If possible a list of hospital admissions including how long if you have been vented, gone to ITU etc as sometimes they contact the hospital and get things like your blood gases etc
Bex
Problems With Your Inhalers
