Asthma treatment needs to be tailored to suit each individual. Health professionals can help monitor and manage symptoms, and prescribe medicines. According to current guidelines (British Thoracic Society/ SIGN 2016) people with asthma should be offered:
- Care at the GP surgery provided by doctors and nurses trained in asthma management
- Full information about asthma and how to control it (self-mangement education)
- Regular checks to ensure that the asthma stays well controlled (regular professional review)
- A written personalised asthma action plan agreed with the doctor or nurse caring for you.
Communication between the person with asthma and the health professional is not just about the amount of contact and information, but also the quality of the relationship.
People with asthma wanted health professionals to really listen to them, to respect their expertise as the person with the condition, to talk to them in plain language they could understand, and to treat them as equal partners in their care.
General practitioners (GPs)
Most people see a GP when they are first diagnosed with asthma, although a few will be diagnosed in hospital. Because diagnosis is not always clear cut it can take several visits to rule out other explanations for symptoms, or, once asthma is suspected, trying different medications to find the right type and dose.
Stephen was reassured by his GP when he was recently diagnosed with asthma, and felt that he encouraged him to take a positive attitude towards managing it.
Stephen liked the fact that his GP was reassuring. However, there were mixed views about how to get the balance right between reassuring people that you can live a normal life with asthma and at the same time being honest about the risk of a serious attack if they do not keep it well controlled. Some people found it reassuring to be encouraged to phone their GP when they had worries or concerns.
Another approach that can help is ‘safety-netting’: giving people a clear message to come back if they are still worried and suggesting signs and symptoms to look out for.
Andreane thinks people need to understand how serious asthma can be so that they can manage it properly. Doctors need to explain things, but without making it sound too scary.
When she was first diagnosed Janes asthma was unstable for a time, but she was able to have regular telephone consultations with her GP for advice. She says it’s important that doctors listen to you and understand how asthma is affecting your life.
Others agreed with Jane about the importance of doctors understanding more about you and your life in order to give the best advice about treatment. If the doctor or nurse has asthma themselves, or a special interest in the condition, this could make it easier to talk to them.
People often worry that their GP does not always have enough time to talk or enough specialist knowledge to give them the kind of information that they need, because they have to be able to look after people with a wide range of different medical conditions. This is one of the reasons why specialist asthma nurses and clinics have been introduced in many practices (see below).
Where people reported unsatisfactory consultations with GPs this was often because they felt they had been dismissive or had not treated them respectfully. Faisil said his family GP was the “old school” type who seemed to have a set way of treating patients, whereas more recently he had seen a younger GP who seemed to have more knowledge and interest in helping asthma patients.
Margaret felt her GP labelled her in an unhelpful way.
Margaret felt her GP was insensitive when he wrote asthma’ on her medical records, as if she was now going to be defined by having asthma. She realised later that the GP should have given her more information about how to use inhalers.
Tomas used to find when he was younger that doctors talked to his parents more than to him, but thinks it’s important for doctors and nurses to talk directly to young people in language that they can understand, and thinks that’s the best way to “get through to them”.
Tomas says it’s important that doctors talk directly with young people when they go for a consultation.
Many GP practices now have a dedicated asthma nurse that people can see on a regular basis, or contact at any time when they feel they needed help or information. This was generally highly valued. Some people pointed out that the GP will not always be an expert on asthma or have a lot of time to spare because they have to deal with so many different aspects of health, whereas an asthma nurse may be more able to give expert guidance and information about managing the condition. Several people said that they hadn’t been told how to use inhalers properly until they had seen an asthma nurse who demonstrated the technique to them in person. A couple of people said that their GP or asthma nurse actually had asthma themselves, and that was reassuring to them.
Nicola hadn’t seen an asthma nurse until sometime after she was diagnosed with asthma, and said she got some really useful information from her. “She had the models of your airways and she could show you what happens when they’re swollen and exactly why people are asthmatic in the first place, which was interesting, actually, to hear.”
Asthma nurses seemed to have more time than the GP to help them with things like inhaler technique and management of their asthma, and it was often easier to get an appointment with the nurse.
Eileen has a good relationship with the GPs at her surgery but she says she understands that a GP can’t know everything. The asthma nurse has a more in depth understanding about managing asthma.
A specialist asthma nurse describes what her role is in providing asthma management.
A few people said it was only when they saw an asthma nurse that they realised they had not been using their inhaler correctly. Jane gets on well with her GP but says, “We hear so much about GPs being busy… When I go and see the nurse I just feel like I’ve got more time and I can talk to her for longer, more freely”.
Andreane felt the doctor didn’t spend enough time explaining things to her, but the asthma nurse had more time to spend giving her information which helped her to better understand how to manage her asthma.
It is good practice for people to have their asthma reviewed periodically, with the GP or the asthma nurse. Some people we talked to went very regularly for an annual or 6-monthly review/check-up and others more irregularly – whenever they had symptoms.
A specialist nurse talks about the importance of regular asthma reviews.
Not all GP practices have a specially trained asthma nurse. In some cases people said that even where their practice did have a specialist clinic, they had not realised at first because they hadn’t been told.
In some surgeries the practice nurse may see patients with asthma. There were occasional comments from people who did not think the nurse in their practice had enough training and knowledge to advise them, particularly if they had been living with asthma for many years or had a particularly complex type of asthma.
Some people whose asthma was mild or infrequent also felt they did not get much from seeing the nurse. But overall the introduction of specialist trained asthma nurses was seen as extremely valuable, giving people easy access to detailed advice and reassurance, in person, by phone or electronically. Several people commented that this is much better than in the past, when, as David recalled “you were just given inhalers and left to get on with it.”
Nicola appreciates the fact that the asthma nurse has time to explain things in detail.
Melissa says that the care she receives these days from her asthma nurse and GP is much better than it was when she was first diagnosed.
Eve said that getting to know the nurse and building a relationship over time makes a big difference, as “she knows how you’ve been, what works for you”. Developing this kind of relationship with the asthma nurse so that he/she would know you and how asthma affected you was felt to be crucial for successful self-management and often people said that by doing this they had gradually felt able to begin to make their own decisions about what to do when their asthma was feeling out of control, or that they felt it was reassuring to make decisions together with the nurse.
Mark was in regular contact with his asthma nurse by phone or in person, and he felt reassured by her availability. Although he’s had asthma since childhood, he still finds it difficult not to panic when he’s feeling very breathless, so it’s good to have someone on the end of the phone who will help him to calm down and not to panic.
Dee says it’s important to have a relationship with the asthma nurse so that she knows you and how asthma affects you. [AUDIO ONLY]
Pharmacists were also identified as a useful source of support and helpful advice, particularly if people were prescribed new medication. Melissa said that she had known the local pharmacist for many years. “I get on really well with them… So it’s nice because you’ve got that security to know that you’re not going to be given a medication that could have an adverse effect on you.”
Specialist care in hospital
Some people were referred to a respiratory specialist in a hospital and had regular contact if needed, or sometimes for one or two appointments.
When someone has poorly controlled asthma that is not responding well to normal treatments they may be referred to a respiratory consultant.
For people with severe asthma, having access to the expertise of hospital specialists was reassuring. Jane said, “Although I rely on the GP to issue prescriptions, if I’m seeking advice I’m going to always want to go to the consultant… He’s actually said that I can be discharged, but if I ever feel the need to go back it’s sort of an open invitation.”
People also came into contact with a variety of different health professionals in out-patient clinics. When Margaret was given the diagnosis of asthma at the hospital it came as a shock, especially because she said the way she was told was “very matter of fact. It was to give me the news: here’s the information and, any questions? And you’re just so stunned that you can’t think of any questions to ask.”
Some people, like Catherine, had developed strategies to make their hospital consultations more useful to them, such as taking a friend to the appointment for moral support, or keeping a diary or notes so that it was easier to remember things you wanted to be able to talk about or ask about. Both Jenny and Catherine, who have quite severe asthma and visit hospital regularly, said it could be frustrating to have to keep telling different people about their medical history.
Catherine has seen a lot of different consultants over the years and says it can be difficult when they don’t know you or your medical history. It can make a huge difference if you can develop a relationship with health professionals who are treating you.
Mary said her consultant wasn’t very friendly and talked to her about losing weight in a way that made her feel guilty for not being able to do it.
Mary felt upset at the way the consultant talked about losing weight. [AUDIO ONLY]
On the other hand, Jenny has now established a good partnership with her consultant and they have planned together what works best for her and made sure everyone knows what to do. Andreane felt the emergency care offered by ambulance staff has been very good and that they have been well trained to respond quickly to a possible asthma attack.
Jenny often has to go into hospital as an emergency admission, but her consultant, the hospital staff and ambulance crews know about her needs and what works for her. The doctors sort of say, ‘oh you come with instructions!’.
Andreane appreciates being taken seriously by paramedics if she has to call for help, but has also had some interactions with health professionals that have left her feeling let down.
Ann felt it was important for health professionals to take account of “the whole person” rather than just focusing on the symptoms and the medical or treatment side of things.
Anne was extremely anxious when she was first diagnosed with asthma, but didn’t think that the health professionals she had seen understood, until she was referred to see a consultant who realised how she was feeling and how it was affecting her.
(Also see Messages for health professionals, Being diagnosed with asthma, Medication and treatment: inhalers, Finding information about asthma, Managing asthma: reviews and action plans, Changing symptoms over time, Exercise, diet, weight and other lifestyle issues and Advice to others).