Blog post: Parents are frustrated and ‘in limbo’ waiting for their child to get an asthma diagnosis

Dr Andy Whittamore reviews our survey of parents of children under six

How does it feel when your child is coughing, wheezing or breathless but the GP can’t say it’s asthma yet? We asked parents of children under six just what it’s like waiting for a diagnosis and over 200 of you took part in our survey.

“This is the single biggest thing in my daughter’s and my life. She is only five and this is having a massive impact on her.” Survey respondent.

Getting a diagnosis can take months, or even years; most of you completing the survey had children aged four to five, but two thirds of you told us your child started getting symptoms under the age of two.

And in that time, you have faced some frightening times: almost 70% of parents have either called 999 or taken their child to hospital. “It’s exhausting, worrying, heart-breaking, and time-consuming,” one survey respondent said.

Suspected asthma

One clear message from our survey is that this is an emotional time. Some of you feel ‘fobbed off’ with diagnoses of croup, bronchiolitis, chest infections and viral wheeze; others are frustrated by differences of opinion amongst their healthcare team. “No definitive diagnosis causes our family untold stress and anxiety,” replied one parent.

The fact is that tests used to diagnose asthma are not suitable for children under five or six. As a GP, I know how frustrating this can be, but at the same time we don’t want to give a wrong diagnosis too soon.

Often the safest way forward when your child’s symptoms, and their medical history, point towards asthma being likely is to treat your child for ‘suspected asthma’. Half of you told us you’re in this phase, when UK medical guidelines recommend a monitored trial of treatment. Sometimes it’s what happens over time that gives us the biggest clue as to whether it’s asthma or not, and it can take several visits to get it right.

Daily symptoms

One clear message from this survey is that it can be an emotional time. On top of usual parenting demands, you’re dealing with symptoms like cough and wheeze ‘at least once a week’; one fifth see symptoms ‘every day.’ One parent told us: “It’s so scary when your child is struggling to breathe and you feel absolutely helpless and angry that this is happening to them again and again.”  

Colds – the top trigger

It doesn’t surprise me that colds come out as your number one trigger concern, with 94% of you telling us colds make your child’s symptoms worse – young children are still developing their immune systems and can get as many as eight colds a year. Quite a few of you tell us your child only has asthma symptoms when they have a cold. One parent said: “I dread it when she gets a cold; I’m so worried she’ll wake up not able to breathe.”

GP advice and asthma meds can help

We know that many of you feel helpless; you’re exhausted and worried. You want to be listened to, taken seriously, and to understand more just why your child can’t be diagnosed.

Asthma UK is committed to more research into how asthma is diagnosed, so everyone with asthma symptoms can get timely, accurate diagnosis.

In the meantime, I encourage you to keep in touch with your child’s GP and asthma nurse so they can monitor your child and keep them safe. Give your child their medicines as prescribed; if they make a difference to their symptoms this suggests they probably do have asthma. Make sure you use a written asthma action plan and share it with anyone else caring for your child.

And don’t forget, you can talk through your concerns with one of the asthma nurse specialists on our Helpline (0300 222 5800, 9am-5pm Mon-Fri) or chat to other parents on our Facebook page and forum.

Get up-to-date advice on getting a diagnosis here

“The doctors have explained why it takes time to diagnose asthma…” Read how Kelly manages her son James’ suspected asthma.

Dr Andy Whittamore from Asthma + Lung UK

Dr Andy Whittamore is a GP based in Hampshire, specialising in respiratory care. He’s Asthma + Lung UK’s in-house GP, where he works on building relationships with key opinion leaders in respiratory care, identifying emerging issues in asthma, and providing the charity with clinical expertise.