Wednesday 15 May 2019
Asthma UK reveals parents’ ‘agonising wait’ for their child to be diagnosed with asthma – and the emotional and practical impact
One in five children with asthma are being forced to wait three or more years for their asthma diagnosis, according to new research by Asthma UK.i
The charity has revealed the emotional and practical toll of this ‘agonising’ wait on parents, with many seeing their child in and out of hospital as they ‘fight for their life’, needing to take time off work and feeling helpless.
Asthma UK surveyed more than 10,000 people with asthma, including parents of children with asthma, and found that:
- One in five children have to wait three or more years for an asthma diagnosisi
- Nearly a quarter of parents (23%) have missed more than two weeks in total from work while they wait for their child to be diagnosedii
- More than 1,400 calls last year to Asthma UK’s helpline were from parents who needed advice about their child’s diagnosisiii
- Two out of five parents (41%) waiting for their child’s asthma diagnosis said it made them feel helplessiv
- A similar proportion (38%) said they felt constantly on edge worrying that their child would have another asthma attackv
- Asthma UK is urging parents to get support on how to look after their child during the diagnosis process from its website at www.asthma.org.uk/childdiagnosis. The charity is also calling on researchers and funders to create better diagnostic tools for children with asthma to reduce their waiting time for diagnosis.
It can be difficult for GPs to diagnose asthma in children, especially those under five, because they are too young to take the tests. For example, young children may not fully understand instructions to breathe out forcefully to assess their peak flow, which measures how quickly someone can blow air out of their lungs.
Young children’s lungs also haven’t fully developed, so their lung capacity can’t be effectively measured with current tests. This means that in most cases, GPs can only confirm an asthma diagnosis once children are over the age of five.
Symptoms like coughing and wheezing can also be caused by other conditions, including viral infections such as bronchiolitis or croup. These short-lived, but often recurrent conditions need to be ruled out before an asthma diagnosis is made.
Another reason it could take children so long to be diagnosed for asthma is that there are still no one test that can accurately diagnose asthma for any age group, so GPs have to use a range of tests as well as monitoring symptoms over time.
Children waiting for an asthma diagnosis could need repeated visits to their GP and some children initially might only be given a reliever inhaler.
While this can be used if they have asthma symptoms it won’t prevent them from having a potentially life-threatening asthma attack or ending up in and out of hospital. On average, more than 25,000 children are hospitalised with asthma each year.vi
Later in a child’s diagnosis process, doctors will try different preventive medications to see what works best. Even if these work, they may advise them to come off preventive medication completely to see how this affects them and if symptoms come back, which can be a worrying time for parents.
Morag Stewart, 39, from Aylesbury, Buckinghamshire, knows first-hand how worrying it is to see her four-year-old daughter struggle with undiagnosed asthma. She said:
“My daughter Inara’s been struggling with terrifying breathing difficulties since she was 18 months old, leaving us desperate for answers and lying awake at night worrying about our little girl.
“She’s been in and out of hospital because of her breathing and we’ve had to watch on, helpless as our baby is hooked up to drips and devices in intensive care to help her breathe. I’ve felt like my world was crumbling around me, as time and again I would see Inara wheezing and gasping for breath, her lips turning blue from a lack of oxygen.
“I don’t want any other family to go through the agony we have, which is why it’s so reassuring that Asthma UK has information available to help parents through every step of getting their child’s asthma diagnosis.”
Asthma UK is urging parents of children with asthma or suspected asthma to use their expert online guide on child diagnosis. This can help their doctor reach a diagnosis and ensure their child is on the right asthma medicines as quickly as possible.
The charity is also calling on funders and research bodies to create better diagnostic tools for asthma in line with NHS England’s Long Term Plan.vii This will speed up diagnosis for children and adults with asthma and help ensure that everyone is on the best medication to help prevent asthma attacks.
Dr Andy Whittamore, Clinical Lead at Asthma UK and a practising GP, said:
“Seeing your child struggling to breathe or rushed to hospital and not knowing what is wrong is every parent’s nightmare. Sadly, this can be the reality for many parents who are left in limbo with a poorly child. This agonising wait for an asthma diagnosis can take years, leaving parents feeling helpless, frustrated and confused.
“But there are things that parents can do to help their child’s doctor make a diagnosis. Something as simple as keeping a diary of your child’s symptoms for a couple of weeks or filming your child’s symptoms on your phone could really help to give your child’s GP the full picture.
“We’re urging parents who are worried their child might have asthma, or are waiting for a confirmed diagnosis of asthma, to use the expert child diagnosis guide on our website to help them through their child’s diagnosis process. Visit www.asthma.org.uk/childdiagnosis to find out more.”
Dr Samantha Walker, Director of Research and Policy at Asthma UK, said:
“Diagnostic tools for asthma - especially for children under five - are not fit for purpose. GPs are doing the best they can with the tools they have, but without more effective ways to diagnose asthma, their efforts are often wasted.
“Currently available tests are not able to differentiate between asthma and other conditions that can cause wheezing in children. The tests that can help are time-consuming and are not suitable for young children. The only option is for GPs to diagnose ‘suspected asthma’, which is understandably frustrating for parents.
“In line with the NHS England’s Long Term Plan, funding bodies need to commit to invest in research to develop new and improved diagnostic tools for asthma, including tests that can be used in young children.”
For further information, please contact:
Hannah Jowett, Media Officer – 0207 786 4951 or firstname.lastname@example.org
Asthma UK media team – 0207 786 4949 or email@example.com
Out of hours – 07951 721 393
Notes to Editors
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i Asthma UK conducted a survey of 10,064 people with asthma across the UK. 778 survey respondents were parents of children with asthma, and of those, 151 (19) said their child had waited 3 or more years for their child to be diagnosed with asthma.
ii Ibid.Of the 778 survey respondents who said they were parents of children with asthma, 721 were working. Of those who said they were working 168 (23%) said that they had taken more than 10 days off work in the time it took for their child to get diagnosed with asthma.
iii Between 01/01/18 and 31/12/18, Asthma UK’s Helpline received 1,469 calls about asthma symptoms, or asthma symptoms with no diagnosis in children 17 years and under.
vi Ibid. Of those who said they were parents of children with asthma (778), 316 (41%) said they felt helpless during their child’s diagnosis.
v Ibid. Of the 778 survey respondents who said they were parents of children with asthma, 292 (38%) said they felt constantly on edge worrying that their child would have another asthma attack while they were waiting for a diagnosis.
vi Bespoke data request from NHS Digital, NHS Wales, ISD Scotland.
Number of children hospitalised (0-14)
vii The NHS England Long Term Plan outlines that ‘The NHS will do more to detect and diagnose respiratory problems earlier’ and that ‘Patients benefit enormously from research and innovation, with breakthroughs enabling prevention of ill-health, earlier diagnosis, more effective treatments, better outcomes and faster recovery.
NHS England Long Term Plan, p.66 and p.75, https://www.longtermplan.nhs.uk/wp-content/uploads/2019/01/nhs-long-term-plan.pdf [accessed April 2019]
About Asthma UK
- In the UK, 5.4 million people are currently receiving treatment for asthma: 1.1 million children (1 in 11) and 4.3 million adults (1 in 12).
- Every day, the lives of three families are devastated by the death of a loved one to an asthma attack, and tragically two thirds of these deaths are preventable.
- Asthma UK’s mission is to stop asthma attacks and cure asthma. We do this by funding world leading research, campaigning for improved care and supporting people to reduce their risk of a potentially life-threatening asthma attack.
- For more information about asthma please visit www.asthma.org.uk