Advice to others about asthma
We asked people what messages they would give to others from their experiences with asthma. A key message echoed by many interviewees was that although...
We asked the people we interviewed what messages they would like to convey to health professionals who look after people with asthma.
Developing good relationships with your GP, asthma nurse or consultant was seen as helpful in enabling people to manage their asthma successfully, and to get help when needed. In order for this to happen, one of the most common messages was that health professionals should really listen to patients, give them plenty of information and time to ask questions, and treat each person as an individual, especially since asthma can vary so much from person to person.
Belinda says it is important to feel that your doctor or asthma nurse is working with you rather than telling you what to do: “It’s not you and them, we are together as a team.”
For Jan, the most important thing is to feel that you are being heard and taken seriously: “Our experience counts, to me it should be about partnership. I mean yes, we haven’t got the technical knowledge, but Ive got 43 years’ experience of living with asthma.”
Jane recommended that doctors think about how asthma is affecting people “in the round, not just how it’s affecting our breathing”, and others agreed that seeing the whole person was helpful.
Faisil would like doctors to be mindful of the impact that having asthma could have on people’s wider life and wonders if they are sometimes too focused on prescribing inhalers and medication, and not on providing wider support and information.
Andreane suggested more attention to the whole person might actually give the doctor useful clinical information about possible triggers or lifestyle factors affecting the person’s asthma.
Peter has been doing volunteer work for Asthma UK so has had the opportunity to talk to quite a lot of people with asthma. He says there seems to be a wide variation both in the way that health professionals think about asthma and in the way that they deal with patients.
Julie feels that if a parent goes to see the doctor with a wheezy child they should be listened to and taken seriously because asthma can be life-threatening if not recognised and treated. “Be aware that asthma kills, to put it very succinctly. Not fob it off.”
People thought a balance needs to be struck since for most people asthma can be well-controlled and will not be life-threatening.
Stephen remembered when he was newly diagnosed as a young adult and his GP gave lots of reassurance that “this is no big deal. We can cope with it. There might not be a cure but there’s plenty of other ways of dealing with it very positively.” Saying “we can cope” rather than “you can cope” is perhaps a good example of working together, as a team.
People who had been diagnosed as children or in their teens also had important messages for health professionals. Nicola’s key message was to make sure that young people know where to go for help, information and support, even if the GP doesn’t have much time.
Tomas emphasised how important it was for doctors and nurses working with young people to explain things in ways that could be easily understood, to “talk on the same level.” He thought bringing home to young people the reality of the condition might encourage them to take their medication regularly: “showing them how bad it can be, but not so scary that they’re going to be really worried about it.” David and Stephen, however, preferred a more reassuring approach.
Margaret was concerned that sometimes health professionals rely too heavily on standard measurements such as the peak flow reading that is used to assess people’s lung function, because they don’t always take individual variations into account. She feels it’s important that people should also be encouraged to be aware of their own capabilities and limitations and to know their own body. Her message to health professionals was “You do the theory and I do the practical and we have lessons to be shared and learnt from each other”.
Alice also felt it was very important for health professionals to encourage people to get to know and understand their own asthma patterns, and to give them the right tools to help them self-manage their condition.
Also see Dealing with health professionals and Managing asthma: reviews and action plans.
We asked people what messages they would give to others from their experiences with asthma. A key message echoed by many interviewees was that although...