The Taskforce will continue to campaign for change on behalf of people with lung disease
Sarah MacFadyen, Vice Chair of the Taskforce for Lung Health and Head of Policy and External Affairs at Asthma UK and the British Lung Foundation, writes about the challenges the respiratory sector will face in 2021, and the role of the Taskforce in campaigning for improved care and support for people with lung conditions.
As a result of the pandemic, more people have started to notice lung health, become aware of the danger of respiratory infections, and have begun to acknowledge the impact of air pollution on their wellbeing. We are all more aware of our lungs than ever before.
But despite this increased awareness, respiratory services have been hit harder than ever. The Taskforce for Lung Health, formed as a collaboration across the leading voices in respiratory care, has never been a more important project than in 2021, when we have seen people with lung conditions not only face the consequences of historic neglect when it comes to diagnosis, treatment and care, but the devastating impact of the pandemic, too.
To change the state of care, the messaging needs to change
One of the big challenges for respiratory care in 2021 is the messaging surrounding the COVID-19 crisis. When the country plunged into a national lockdown in March 2020, everyone was told to “Stay at Home. Protect the NHS. Save lives”.
But while this message was effective at lowering transmission rates, it turned out to be a double edged sword as some of those who are most vulnerable in our society – people with lung conditions – took the words to heart. In fact, over a third of people with lung conditions delayed or avoided seeking care during the first wave of the virus, in part because they did not want to “burden” the NHS.
Now, in 2021 and in the wake of a third lockdown, we are once again seeing the message to “protect the NHS” reiterated. But where does that leave people with lung conditions, many of whom have felt the pressure to avoid treatment? We know that those who avoided treatment saw their symptoms get worse, and it is getting increasingly difficult to predict how many people with lung disease are struggling now.
No matter how much we stress that the NHS is open, nothing will be as powerful as a direct instruction from the government that the only way to truly protect the NHS is to stay at home. Every day, another headline brings the news that the NHS is facing a level of strain and demand that is quickly growing, potentially reinforcing the message that people with respiratory problems should not try to seek help. The real worry now is as our hospitals face greater pressures than ever before, there is a risk that people with lung conditions will not be able to get the help and support they need, even when they do ask for it.
The impact on respiratory care is unprecedented
It’s important to remember that the picture of lung health before COVID-19 was one which was fraught with issues. For instance, we now know that well before the pandemic, 1 in 3 people with lung disease waited longer than six months for a diagnosis, and 1 in 6 waited for up to a year. But evidence shows that the backlog is likely becoming even greater, as in the first wave of the virus alone, delays to care may have led to thousands of missed diagnoses.
Treatments are also being impacted. Pulmonary rehabilitation (PR), an exercise and educational treatment considered widely to be more effective than some drug based treatments, was already difficult to access in many parts of the country before the pandemic. But since the first lockdown, many services have had to pause classes. Some have moved to offer virtual sessions but there is currently no national standard for virtual PR, and patient-facing members of the Taskforce, such as Pulmonary Fibrosis Trust, have told us that some of their beneficiaries struggle to access the digital offering that is made available to them.
We know that PR is proven to reduce exacerbations, and the fact that people with lung disease will have been unable to access this treatment for so long will mean that many are now less fit. It is also expected that some of those shielding – and around 800,000 people with lung conditions were identified as needing to shield – will have much reduced physical activity.1 In short, this inability to access PR will inevitably create an immediate need for support and add to the growing backlog of patients waiting to access the treatment as pressures faced by the NHS continue to rise.
Promisingly, there is more awareness of the need for rehab for those living with respiratory conditions. But sadly, this is a result of Long Covid patients needing very similar treatments, and as the numbers of people with Long Covid grow, the pressure on rehab services and on respiratory specialists and departments who are often supporting them will increase. It is crucial that changes are made now to ensure that there is sufficient workforce to support anyone who may need rehab now or in the future.
Silver linings and beyond
The impact of the pandemic on diagnosis, treatment and care for people living with lung conditions is significant. However, increased awareness of the challenges faced by people with lung disease led to some incredible progress in 2020, which will lead to positive changes in 2021 and beyond. The increased recognition of the capabilities of community pharmacists has been heartening and the drive towards establishing diagnostic hubs as a ‘one stop shop’ to tackle the issue of safe and timely diagnosis for people with lung conditions this year will hopefully alleviate some of the backlog from the pandemic, while accelerating diagnostic care in the country to ensure that waiting times are reduced.
Finally, the establishment of specialist respiratory networks across the country offers a light at the end of the COVID-19 tunnel – as they become indispensable in handling the pandemic, they will also develop the infrastructure and expertise to deliver the NHS Long Term Plan and go beyond it in improving care for people with lung disease at a local level. In the meantime, the Taskforce for Lung Health will continue to push for our recommendations to be met, so that people with lung disease get the best possible outcomes in 2021 and beyond.
- NHS Digital SPL identified over 800,000 people in England on the shielding list due to their respiratory condition: https://digital.nhs.uk/dashboards/shielded-patient-list-open-data-set