People who are dying from interstitial lung disease are wasting the precious time they have left finding their way around an ineffective and unnecessarily complicated healthcare system. That’s according to a report by the British Lung Foundation.
A map for better care: making effective care pathways for people with interstitial lung disease (ILD), highlights the crises in ILD care.
ILDs are a group of diseases affecting the network of tissue that supports the air sacs in the lungs. The report focuses on the most common ILD, idiopathic pulmonary fibrosis (IPF). A condition, with an average life expectancy of just three years after diagnosis, which affects around 32,000 people in the UK.
According to the study, many patients say their GP doesn’t understand their disease and that they haven’t had any clear information to help them live the short life they have left; diagnosis was delayed and in some cases dismissed.
According to the study, many patients say their GP doesn’t understand their disease and that they haven’t had any clear information to help them live the short life they have left; diagnosis was delayed and in some cases dismissed.
Crucially, access to vital treatments are out of reach, including drugs that could extend their life expectancy because of restrictive NICE guidelines.
A map for better care outlines the progress that has been made, identifies areas for improvement, and makes several recommendations. These include:
· Ending the postcode lottery and fragmentation of services by establishing local ILD networks across the UK. These networks should bring together health care professionals, policy-makers, commissioners, charities and patients to improve local services.
· Establishing a Taskforce for Lung Health in England and Scotland (following recent taskforces for cancer and mental health) to produce a five-year strategy for tackling lung disease.
· Improving access to vital tailored treatments, including drugs, lung transplantations and palliative care.
· Ensuring jointed up working between specialist centres, broader respiratory services, commissioners, patients and charities.
· Ensuring patient-centred communication and care, defined as: affording people dignity, personalised care and supporting people to develop their own strengths.
Professor Toby Maher, British Lung Foundation Chair in Respiratory Research, NIHR Clinician Scientist and Consultant Respiratory Physician at the Royal Brompton Hospital, says: “As a consultant respiratory physician, I see how neglected problems in the healthcare system affect patients. It is frustrating that because of inflexible guidelines I am unable to offer over a third of my IPF patients life-prolonging drugs approved for use in their disease. Every day, I meet individuals, with limited life expectancy, who could have been referred, diagnosed and consequently treated much earlier if the system was more responsive to their needs.
“This systemic failure is well known. The British Lung Foundation’s Battle for Breath report last year revealed that the mortality rate for people with lung disease is roughly the same as it was 10 years ago.
“I sincerely hope policy-makers and healthcare professionals will now come together to put these recommendations into practice.”
Dr Penny Woods, Chief Executive of the British Lung Foundation says: “We hear far too often from ILD patients how they struggle to get a diagnosis, as well as access to treatment and support. People with IPF are being forced to spend their remaining time being shunted from service to service and fighting for treatments that could help manage their condition or even prolong their life.
“Care and treatment could be better in many parts of the UK. We recognise that this failure is part of the long-term neglect of lung disease as a whole. Current and future lung health patients need NHS England and Governments to establish a taskforce for lung health that will finally transform outcomes and care for these patients.”
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