Lung disease on the rise due to Covid-19 but rehab cut short during pandemic

The survey of UK patients and carers, conducted by the Pulmonary Fibrosis Trust, reports that the cancellation of treatments has affected more than one third (82.9 per cent) of pulmonary fibrosis patients.

Pulmonary fibrosis (PF) is an incurable disease that causes scarring of the lungs and makes breathing increasingly difficult, affecting around 70,000 people in the UK and with an average survival of three to five years.

Emerging data reveals that PF could be a long-term respiratory consequence of Covid-19 due to the similar lung-scarring effect.

Peter Bryce, chair of the Pulmonary Fibrosis Trust, said: “PF is a horrible, cruel and irreversible disease with a worse prognosis than many types of cancer.

“Unfortunately, as a consequence of the coronavirus pandemic, we could see many more people requiring pulmonary rehabilitation.

“Yet, just when people need it most, we are seeing a reduction in this type of support.”

According to the survey, almost half (49.3 per cent) of those with medical appointments cancelled due to Covid-19 claimed their health had deteriorated as a result.

Kim Verry, clinical specialist respiratory physiotherapist, said: “Pulmonary rehabilitation is an essential part of managing PF and other lung diseases.

“In some form, it may prove beneficial for people recovering from the long-term impact of Covid-19.

“Programmes help patients to improve management of their breathlessness and symptoms. Without it, there can be a decline in their quality of life.”

The Pulmonary Fibrosis Trust is now calling for universal access to pulmonary rehabilitation.

Feeding into this is a pre-existing campaign movement led by the Taskforce for Lung Health and supported by Action for Pulmonary Fibrosis (AFP) and MP for Weaver Vale, which covers Runcorn, Mike Amesbury.

Mike Amesbury

The group petitioned Health Secretary Matt Hancock to broaden the availability of life-prolonging antifibrotic drugs, which are currently restricted to patients whose lung capacity has declined to between 80 per cent and 50 per cent of what is expected for their age and height.

Sarah Jones, 39 from Runcorn, was another key figure in the campaign, inspired by the loss of her dad, John Jones, to PF in 2013.

John Jones

Their family was devastated to learn that PF is a terminal disease from an internet search, which the specialist failed to mention at diagnosis.

Mr Jones’ next appointment was due six months later but was delayed by a month and he passed away from a pulmonary embolism at home in the meantime.

Ever since Sarah has been a passionate ambassador for awareness and improved treatment for PF, working closely with her MP Mike Amesbury.

Mr Amesbury said: “It’s been a privilege to work with Sarah. It’s impossible to overstate just what a huge impact she’s had in my constituency raising awareness about a condition which is still very misunderstood and of which many people are still unaware.”

Sarah said about antifibrotic drugs: “I want the capacity range to be increased because it’s a terminal disease and I want you to be able to get as much time with your family as possible.”

Toby Maher, Professor of Interstitial Lung Disease at Imperial College London, is also opposed to the ‘rationing’ of antifibrotic drugs, highlighting the fact that PF is a terminal disease and withholding treatment ultimately shortens survival for patients.

He said: “The challenge is there’s no scientific rational for the rules – the rules really are about rationing health care and saving money because we know the drugs are equally effective in patients with milder disease as they in patients with more advanced disease.

“Given this, it is heart-wrenching that in the UK, unlike in all other European countries, doctors cannot treat people with PF at diagnosis but instead have to wait until their lungs get irreversibly worse through scarring.

“We’re losing an opportunity to try and protect people’s lung function and maintain their quality of life.”

The progressive and irreversible nature of the condition means that spotting the symptoms early is essential.

However, the symptoms of PF such as shortness of breath, a persistent dry cough and ongoing fatigue can often be confused with other more common respiratory diseases, often delaying diagnosis.

This confusion is worsened by the fact that many people have never heard of the disease before diagnosis, confirmed by 87% of those surveyed.

One such patient is Amy Price, mother of reality TV star Katie Price, who was diagnosed in 2017 after suffering from a persistent cough and visiting an asthma nurse for five years before being given a chest x-ray.

Katie Price

The now 68-year-old said she was ‘very angry’ with her doctor for not picking up the condition sooner and urged the asthma nurse to listen to her patients and follow up their concerns properly.

Ms Price is now a participant in a drug trial conducted by the research team under Professor Maher at Royal Brompton Hospital that hopes to improve treatment for PF patients.

Three years down the line from diagnosis and heading towards the minimum lung capacity deemed suitable for antifibrotic drugs, she also supports the calls for broader availability of antifibrotics.

Ms Price said: “I’m really starting to run out of options to be honest.

“When you come out of that period you think to yourself well that’s it then, you know you’re on the downward slope.”

But she promotes an active lifestyle for coping with the condition urges other sufferers to remain positive.

She said: “You do feel frightened inside but you’re not dead yet, you’ve still got your life and you should make the most of it.”

To see the survey data or make a donation visit: www.pulmonaryfibrosistrust.org.