- Tens of thousands who are at risk of having the severest form of asthma are ‘in limbo’ in primary care instead of being referred to specialists for diagnosis and treatment
- Patients are caught up in a ‘never-ending cycle’ of life-threatening asthma attacks and forced to take treatments with toxic side effects
- Asthma UK is now calling for healthcare professionals to refer patients with suspected severe asthma to specialist care and for the NHS to increase access to life-changing treatments
Four in five people in England who might be at risk of having severe asthma* - the most serious and life-threatening form of the condition - are not being referred to specialists for the treatments that could transform – and even save – their life, according to a new report launched today by Asthma UK.
‘Living in limbo, the scale of unmet need in difficult and severe asthma’ reveals that tens of thousands of people** at risk of having a type of asthma that does not respond to conventional treatments , could face a ‘never-ending cycle’ where they take their medication but still have repeated life-threatening asthma attacks and end up in and out of hospital.
Many are prescribed long-term, high-dose steroid tablets which aren’t always effective at treating severe asthma and which can cause toxic side effects including weight gain, mood changes and osteoporosis***. These patients are at a higher risk of dying from an asthma attack****.
One of the key issues is that the current guideline from the National Institute of Clinical Excellence (NICE) is not clear about when to refer people with severe asthma which means those most at risk are not being referred.
Asthma UK is calling for NICE to develop new guidelines so healthcare professionals can confidently refer patients with possible severe asthma.
The NHS must also ensure there are enough services in hospital and community care, and specialised treatment services to care for patients with possible severe asthma*****.
New medicines are available that can transform the lives of people with severe asthma, but too few patients are being referred to asthma specialists which means they are not getting a diagnosis or an opportunity to try these new treatments. Monoclonal antibodies (mAbs) are injections that can reduce or stop the need for oral steroids and have fewer side effects. They have been shown to halve the number of asthma attacks******,but they are only available for patients who have been referred to severe asthma centres.
People with uncontrolled severe asthma cost the NHS four times more than treating the average asthma patient*******.
It took Jennifer O’Hara, 49 from Wickford, Essex, three years and repeated hospital visits before she was diagnosed with severe asthma.
She said: “I’ve had asthma since I was a child but four years ago, the stress of my father’s illness caused a terrifying asthma attack that left me in a coma for a week.
“I recovered from the coma but my asthma had worsened. Every day I struggled to breathe. I was in and out of hospital every week and my GP gave me steroids, but they weren’t making me better. My life was at risk because my treatment was not working but no one had connected the dots to realise I might have severe asthma.
“The drugs wreaked havoc on my body, causing dramatic mood swings, osteoporosis and a puffy, bloated face. There were days I didn’t recognise myself when I looked in the mirror.
“Asthma was destroying my life. Friends stopped returning my calls and I lost my job. This went on for three years and it was only after another near-fatal asthma attack that I was finally referred to a specialist.
“I was diagnosed with severe asthma and put me on a ground-breaking new drug that not only works but doesn’t have side effects. It has turned my life around. I can finally have a social life and plan my future.
“I’m so angry it took me so long to get the help and treatment I needed. Luckily it saved me just in time – for someone else it might be too late.”
Dr Samantha Walker, Director of Policy and Research at Asthma UK said:
“Tens of thousands of people with suspected severe asthma are stuck in a never-ending cycle, in and out of hospital and at constant risk of a life-threatening asthma attack.
“For the first time we have the full picture of the scale of the unmet need in severe asthma care. We want healthcare professionals to take asthma seriously and refer suspected severe asthma patients more quickly, as they are have the highest risk of dying from an asthma attack. NICE must also urgently put in place clear, simple and unambiguous guidelines so healthcare professionals can follow the protocol and more people with severe asthma can receive life-saving and life-changing treatment.”
Dr Andy Whittamore, Clinical Lead at Asthma UK and a practising GP, said:
“Severe asthma has a colossal impact on people’s lives and can disrupt their home, work and school life. Many people with suspected severe asthma can feel frustrated and helpless because of continuous symptoms and ineffective treatments.
“GPs are hampered by a lack of clear and effective referral guidelines from NICE for severe asthma. If someone’s symptoms cannot be controlled or they have more than two flare-ups requiring oral steroids, healthcare professionals should consider referring their patient to a specialist asthma clinic. Visit www.asthma.org.uk/severe to find out more.”
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* Living in limbo, the scale of unmet need in difficult and severe asthma. New analysis found that 18% of people prescribed high dose inhaled corticosteroids (ICS) were referred to secondary care. This data is via the Clinical Practice Research Datalink (CPRD), and looked at referral rates in England in 2016. Further detail on this data is available in the report.
** Ibid. 82% of people on high-dose inhaled steroids are not being referred, despite a guideline from the British Thoracic Society/ Scottish Intercollegiate Guideline Network saying that they should. To work out the 82%, or 127,000, Asthma UK applied 82% to the number of adults (via QOF estimates of asthma prevalence) estimated to be receiving high dose inhaled corticosteroids (ICS) in England.
***Broadbent, C. Pfeffer, P. Steed, L. Walker, S. 2018. Patient-reported side effects of oral corticosteroids. European Respiratory Journal. 52: PA 3144. Accessed at https://erj.ersjournals.com/content/52/suppl_62/PA3144
**** Of 155 asthma deaths investigated in NRAD for which severity could be estimated, 61 (39%) appeared to have severe asthma. Fourteen (9%) were being treated for mild asthma and 76 (49%) for moderate asthma. This is much higher than the severe asthma prevalence figure of 3.6%.
*****Asthma UK is part of the Taskforce for Lung Health which is calling for an additional 100 respiratory speciality training posts to be created over 5 years (20 per year).
****** Using either omalizumab, reslizumab or benralizumab could reduce the risk of an asthma attack by around 50%. Diver, SE. Brightling, CE. 2019. Beyond T-2-inflammation: what does the future hold for severe asthma?. Barcelona Respiratory Network. 5:2(74-89).
*******Kerkhof M, Tran TN, Soriano JB, et al. Healthcare resource use and costs of severe, uncontrolled eosinophilic asthma in the UK general population. Thorax 2018;73:116-124