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The Chief Executive of the British Lung Foundation explains why people living with terminal lung conditions should not have to spend the short time they have left navigating a complicated healthcare system:
Iain Duncan Smith once said that society would simply collapse without grandparents.
They play an essential role in our family homes, from providing childcare, to giving grandchildren the unconditional love they need to grow and develop.
Why is this relevant? Because a recent conversation I had made it painfully clear just how much a terminal lung condition, most people have never even heard of, can take away from us.
I spoke with a patient who has idiopathic pulmonary fibrosis (IPF). The devastation he felt at being unable to do the things he always wanted with his grandchildren, and the reality that he may not be around for much longer to see them, was palpable.
Patients with IPF have a life expectancy of just three to five years after diagnosis. It’s the most common interstitial lung disease (ILD); these are a group of diseases affecting the network of tissue that supports the air sacs in the lungs. IPF causes continuous scarring of the lungs, gradually taking away a patient’s ability to breathe. It has no known cause or cure and only two drugs are approved to treat it.
Imagine living with this awful condition, and having to spend the precious time you have left being shunted from service to service in search of the right care and treatment. This is the reality for many of the 32,000 people living with the disease in the UK.
Patients have told us that primary care professionals’ understanding of their condition is inadequate. They failed to receive any clear information about their disease; diagnosis was delayed and in some cases just dismissed.
Crucially, access to vital treatments is out of reach. We need to change this.
Our report, A map for better care: making effective care pathways for people with interstitial lung disease (ILD), highlights the current crises in interstitial lung disease care, and is a comprehensive guide on how to dramatically improve access to services, treatment and support for patients.
One of the crucial recommendations is the establishment of a taskforce for lung health. This is because we recognise that the failures in ILD care are part of the long-term neglect and under-prioritisation of lung disease as a whole. Taskforces for both cancer and mental health have already started to improve care and outcomes of people in these areas. The same progress is essential for the 1 in 5 people in the UK living with a lung condition.
That’s why the British Lung Foundation is convening a Taskforce of patients, clinicians, charities and NHS delivery experts. We will work to develop a new five year strategy for lung health. We hope the government and NHS England will support this work and take on board our recommendations. In the short term, the most important step we can take to end the postcode lottery and fragmentation of services is to introduce local ILD networks, which will bring together all the key people and organisations to improve local services.
This will drastically improve access to treatments, diagnosis and support.
Patients are also being denied life-prolonging drugs approved for use in their disease because of restrictive NICE guidelines, we also know from our previous report that 36 per cent of people reported having no access to an ILD specialist nurse at all and only 39 per cent of people reported being reassessed for oxygen in the past year.
Everyone living with an ILD should have speedy access to treatment and care when they need it. This includes drugs, specialist nurses, oxygen therapy, pulmonary rehabilitation, and palliative care.
It’s about time we prioritised respiratory health, and ensured our health systems work for everyone living with ILDs. We want to see effective research to find a cure, but right now these patients need the NHS to work at its best for the time they have left.