Foreword: Patient representative

I joined the Taskforce as a patient representative to share my and my son’s story to help challenge the health inequalities of lung disease. The work of the Taskforce is vital, as early and accurate diagnosis is key to ensuring that people with lung diseases have access to the appropriate care and treatments as soon as possible.

I was first diagnosed with asthma as a child and was prescribed a Salbutamol inhaler. I wasn’t shown how to use it, given any resources or provided with an asthma plan or annual reviews. As I got older my asthma got progressively worse until I was being admitted to A&E regularly and became heavily reliant on oral steroids. I was 37 years old with no quality of life. I had to change my job role and stop volunteering. I became isolated, living in my bedroom and entirely relying on my husband to care for me and my son.

I was only referred to specialist services once I was hospitalised with Covid. For the first time, I was given lung function and diagnostic tests and as a result, I was diagnosed with difficult to control asthma. I was provided with an asthma plan and a whole host of medications were introduced, finally 30 years post-diagnosis I now have control of my asthma.

My son Ethan’s story is very different to mine. He was born at 27 weeks and ventilated, subsequently developing Chronic Lung Disease. He was weaned off oxygen and discharged from NICU at 9 weeks.  Following this, we spent on average 1 week a month in the local paediatric hospital with various lung issues like RSV, bronchiolitis and pneumothorax. Ethan feared having an asthma attack so he wouldn’t play sports, watching his friends play on the side-lines. Ethan was home-schooled because his school often missed the early signs of an exacerbation resulting in more hospital admissions.

He was picked up by the Multidisciplinary Asthma Services (MDAS) at 6 years old and was diagnosed with difficult to control asthma. Ethan was given an appointment with an asthma nurse, respiratory clinician, phlebotomist, physiotherapist and psychologist. The team worked with Ethan to teach him how to breathe properly, recognise triggers and ultimately control his asthma. Today Ethan is 14 years old and in full-time education, hasn’t been hospitalised since 2016 and has even achieved a black belt in martial arts.

My son and I live in Merseyside, which is an area of immense deprivation with Liverpool being the local authority with the largest number of the most deprived areas – 10% of our neighbourhoods. There is an average literacy age of just 6 years old in Merseyside, so even if services do provide resources on inhaler technique, there is no guarantee they will be understood. Other factors, such as air pollution, poor housing and the prevalence of smoking, mean Cheshire and Merseyside are the worst places in the country to have a lung condition. The Taskforce’s ‘Saving your Breath’ Report exemplified this and found that in Cheshire and Merseyside, there are 915.09 admissions to hospitals with respiratory conditions per 100,000 people and 122.86 per 100,000 respiratory deaths.

Health is not a stand stand-alone issue, as it comes hand in hand with education, social deprivation and environmental impacts. The MDAS service changed my son’s life. However, if we had lived just 3 minutes down the road, we would not have had access to this service, demonstrating how health inequalities need to be levelled up to prevent postcode lotteries. Without this service, my son would have continued to struggle with asthma control until he was an unhealthy 37-year-old with no quality of life. These inequalities are the reason why a boy born in Kensington, London can expect to live to 86 years of age, 16 years longer than a boy born in Kensington, Liverpool.

Participating in the Taskforce has allowed me to share my experiences as a learning tool and Ethan’s story as an example of best practice, in the hope that we can improve respiratory care for people living in Merseyside and throughout England. The Taskforce’s mission, to prevent more people from developing lung disease, and to transform the care of people living with lung disease has seen them bring together lived and learned experiences to coproduce a 5-year plan for lung health in England.

I am pleased with the progress achieved by the Taskforce in the last year 5 years. The Taskforce has successfully advocated on behalf of people with respiratory conditions, engaging with the NHS and the Government to ensure respiratory lung health remains a top priority. The Taskforce played a crucial role in developing NHS England’s Breathlessness Pathway, which provides a roadmap for primary care physicians to support timely diagnosis. The Taskforce’s efforts have also increased access to diagnosis by facilitating targeted lung checks for all smokers and ex-smokers aged 55-67 years old.

Additionally, the resources created by the Taskforce are essential in ensuring good inhaler technique and asthma control and are widely used in NHS services. The Taskforce has also made great strides in ensuring that people with the most severe asthma have access to the treatments they need and do not become heavily reliant on steroids. A key achievement of the Taskforce is the establishment of an Accelerated Access consensus pathway, expanding the uptake of life-changing biologics.

We know there is still a lot of work to be done to tackle the variations across the country in the quality of lung health care. I am looking forward to continuing to be involved in the Taskforce to ensure that a person’s income or where they live do not determine that they suffer worse from lung conditions.

This foreword was written by patient representative Terri Quingley.