Over a third of people with lung conditions felt pressure to avoid or delay seeking treatment during lockdown
Patients avoided care as they did not want to “burden” the NHS, or “did not feel safe” going to A&E or their GP.
A new survey released by Asthma + Lung UK shows that people with lung conditions delayed seeking treatment due to worries about putting pressure on the NHS, and fears about the spread of coronavirus during lockdown. As many as 1 in 5 (23%), people with lung conditions experienced worse symptoms as a result of delaying or avoiding care, with many needing to manage exacerbations to their condition on their own, without the support of a healthcare professional.1
The results, released by the charities today, highlight how more than a third (34.5%) of people living with lung conditions felt that they could not seek treatment. In response to these findings, the charities are now calling for the NHS to set out a plan to ensure that patients with lung conditions have access to the full range of services available, and are actively reassured by the NHS that they will be safe to use during the pandemic and in the event of a second wave of the virus.
Asthma + Lung UK and the Taskforce for Lung Health are now warning that all routine respiratory care, such as annual reviews and inhaler technique checks, must resume as soon as possible to ensure that people who avoided or delayed care during lockdown can now access support. Annual reviews and other forms of routine care were cancelled for three months,2 and although the NHS recently asked GP practices to resume their normal service levels as far as possible, it is currently unclear as to how this will be achieved.3
The Taskforce for Lung Health recently released data suggesting that referrals for urgent care for people with lung conditions went down by as much as 70% during lockdown.4 Overall, the survey results from Asthma + Lung UK found that 85% of people had experienced some sort of delays or disruptions to their care.
Of those delaying their care, nearly 70% (69.2%), did not feel safe seeking treatment through their GP or at A&E due to fears of COVID-19. But more than half (51%) of people with lung conditions who avoided or delayed care also said they did not seek treatment because they “did not want to over burden the health services”.
In fact, nearly two thirds (64%) of people reported dealing with exacerbations to their condition on their own. When asked how they managed their symptoms, one anonymous respondent said, “I didn’t do anything, GPs are not interested in anything other than coronavirus”. Another stated, “My GP refused to come out or for me to go in as they saw me as too high risk.” The same respondent also said that they chose to pay for private treatment in order to get a diagnosis and care. Asthma + Lung UK are now warning that the NHS must address the backlog of regular appointments which have been delayed or cancelled, and ensure annual reviews for patients with long term lung disease are going ahead, so that people with lung conditions are getting the important care they need.
Mark Wilson, 49, from Grimsby, works for a shipping company and is living with bronchiectasis and severe asthma. During lockdown, Mark was shielding when he noticed that he had developed a cough and that his breathing had started to deteriorate.
Mark said, “During lockdown, I had been in regular contact with my GP, who thought that my symptoms were a result of my ongoing recovery from a recent chest infection. But when a different GP phoned me and advised me to go to hospital, I felt very reluctant. I didn't want to go into hospital as I am usually in there for two to three weeks and I was very worried about catching the virus.
“I called my respiratory nurse who could tell I was concerned about going to hospital so advised me on how to try and manage my symptoms at home. The next day I started to deteriorate, so I phoned 111. They told me to go to hospital, but I didn’t want to go because I was so apprehensive about catching the virus. Luckily, my wife was very worried about me and phoned an ambulance, as I was really unwell by this point. I know now that if I had gone into hospital earlier, I would have gotten better earlier. It took me longer to get better because I delayed my care.”
New analysis by the Taskforce for Lung Health also reveals that bookings for appointments for specialist care in England are still down by as much as 70%, showing little signs of improvement. Routine care referrals are still performing 50% below average, although there has been some improvement in the rates of urgent care.5
Dr Andy Whittamore, GP and clinical lead for Asthma + Lung UK, said, “Finding out that so many people with lung conditions felt that they shouldn’t seek help and care during lockdown is deeply worrying.
“As we head towards winter, it is vital that patients can access the help that they need. This should include routine care for conditions such as asthma, COPD and bronchiectasis, and urgent care if they are getting an increase in their symptoms.
“The NHS is still open but will be put under tremendous strain if we don’t help keep people well ahead of the winter. Where face-to-face appointments are not possible the NHS should be providing telephone or video consultations. It is vital that everyone knows how to access the care that they need and they do not delay seeking medical advice.”
The Asthma + Lung UK survey results showed that patients undergoing longer-term treatments for their lung conditions were also affected by delays to their care and worries about seeking treatment. Pulmonary rehabilitation is an exercise and educational treatment which is more effective than many pharmacological interventions in improving the long term wellbeing of lung patients. From the responses, 2 in 5 people (42%) saw their pulmonary rehabilitation treatment cancelled, and 44% expressed worries that they would be scared to resume a class due to coronavirus.
A recent Yougov survey, commissioned by Asthma + Lung UK, found that 38% of people said that they could walk further after undergoing the treatment, and that nearly 60% (57%), said that they felt more confident and able to manage their condition after pulmonary rehabilitation.6
Crucially, pulmonary rehabilitation is now being incorporated into treatments for people recovering from COVID-19. The Taskforce for Lung Health is warning that it is vital that patients with long standing lung conditions continue to access treatment and care, and that the NHS ensures that patients who already struggled to access treatment before the pandemic, are not now left behind due to the focus on coronavirus.
Alison Cook, chair of the Taskforce for Lung Health, and director of external affairs at Asthma + Lung UK, said, “For too long, people with lung conditions have faced delays to their care, treatment and diagnosis.
“The fact that some patients have recently felt the need to pay for private care, or felt like their GP is no longer there to help them, is unacceptable. Respiratory services need to return to full capacity as soon as possible, and the NHS must actively encourage patients with lung conditions who are worried about being a burden to seek support so that those struggling with symptoms of lung disease can get appropriate treatment and care before the winter pressures set in.
“Anyone worried about their lungs should feel encouraged to seek support immediately, and access to longer term treatments such as pulmonary rehabilitation now needs to be increased to help build resilience among those most at risk of a potential second wave of COVID-19.”
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Notes to Editors
- Asthma + Lung UK surveyed 8495 people with lung conditions from 10 July to 15 July. All figures, unless otherwise stated, are from this survey.
- The NHS advised GPs and GP Practitioners that routine care covered in the GP contract such as annual reviews can be deferred during COVID-19. This guidance was in place from 30 March to 30 June 2020. https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0264-GP-preparedness-letter-14-April-2020.pdf'
- https://www.england.nhs.uk/coronavirus/publication/third-phase-response/. Published on 31 July.
- This Taskforce for Lung Health analysis was calculated using data from the NHS referrals dashboard: https://digital.nhs.uk/dashboards/ers-open-data. The number of missed urgent and routine referrals for respiratory care during lockdown is calculated as the difference between the baseline (expected) numbers of weekly referrals and actual numbers of weekly referrals. The baseline is calculated by NHS Digital and was defined as the average number of referrals per week between 7 October and 29 December. This period was chosen as it was unlikely to be affected by COVID-19.
- This Taskforce for Lung Health analysis was calculated using data from the NHS referrals dashboard, looking at the most recent data available: https://digital.nhs.uk/dashboards/ers-open-data
- All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1069 adults with lung conditions and family members/carers of people with these conditions. Fieldwork was undertaken between 18th May - 12th June 2020. The survey was carried out online. The figures have been weighted and are representative of those with each lung condition.
About Asthma + Lung UK
Asthma + Lung UK merged on the 1 January 2020.
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. We are entirely funded by voluntary donations. For further information, please visit: www.asthma.org.uk.
Asthma + Lung UK is the only UK charity fighting to help the 1 in 5 people in the UK affected by lung disease. The charity provides support and information to improve the everyday lives of people with lung disease. We are also campaigning for better diagnosis, treatment and prevention for now and the future. For further information, please visit www.blf.org.uk.
About Taskforce for Lung Health
The Taskforce for Lung Health is a unique collaboration between patient representatives, health care professionals and other experts. Over 30 members have a shared vision for lung health; we want to transform the care and treatment for patients and change the mortality rate for lung disease, which has barely improved in over a decade.
Coming together for the first time in 2018, we developed a five-year plan to improve lung health in England. Our report makes vital, realistic recommendations to NHS England and other governing bodies about all aspects of lung health; from prevention and diagnosis right through to end of life care. Together we’re giving people with lung disease a powerful voice. For further information visit www.blf.org.uk/taskforce