The charity Action for Pulmonary Fibrosis met members of the All-Party Parliamentary Respiratory Group and other MPs today to call for immediate action by NHS England to improve care for patients affected by the devastating lung disease Idiopathic Pulmonary Fibrosis and to mandate data collection of people diagnosed with the disease. Five thousand people die from IPF every year – most living only three to five years after diagnosis. IPF is the biggest lung disease killer after lung cancer and COPD.
At the launch in London of the charity’s new report, "Fit for the Future: Future-proofing care for patients with IPF", sponsored by Stephen McPartland MP, Chair of the APPRG, Dr Helen Parfrey, Respiratory Consultant at Papworth Hospital and a trustee of Action for Pulmonary Fibrosis, explained how simple changes could help change the lives of IPF patients:
“As trustees for Action for Pulmonary Fibrosis we meet patients on a daily basis…we have carried out the largest-ever survey of IPF patients…and we have been listening to patients’ concerns and experiences. We represent the voice of the IPF patient and they are telling us that they do not receive the appropriate care as specified in NICE guidance and the quality standards.
"Our data demonstrates that there are significant geographical variations in both the availability and the delivery of basic, essential care for people with this terminal lung disease. Working on the front line, I have first hand experience of these inequalities and the challenges faced by patients and their carers; this is of great concern to me and my fellow medical trustees. It is vital that these challenges are better understood. Most of the care for these patients is provided in outpatient clinics but, believe it or not, there is no collection of diagnostic codes for this activity. This means we have no idea how many people have IPF. We work on figures of 15,000 but it could be double that. How can the NHS be expected to provide best care without this information?
"We ask that NHS England mandate data collection on people diagnosed with IPF. Simply having accurate data about the number of people diagnosed with IPF will allow the NHS to make best use of its resources to provide high quality care including access to specialist multidisciplinary teams, specialist nurses, oxygen, pulmonary rehabilitation and palliative care. Planning for and providing better care that can be delivered locally to patients undoubtedly will improve efficiency and cost effectiveness for the NHS."
Charity Ambassador, Tony Gowland (59), an IPF patient diagnosed five years ago also told MPs: "After diagnosis I basically discovered that I was likely to die within three to five years, should expect to slowly suffocate, that no-one knows what caused my disease, that there are no effective treatments and no-one is even near finding a cure. And I just went to the doctor with an annoying cough. Action for Pulmonary Fibrosis is, in my opinion as a ‘lay’ person, asking for simple and straightforward actions that would potentially change the lives of IPF patients and their families and give them some hope for the future."
Mike Bray, Chairman of Action for Pulmonary Fibrosis said: "As an IPF patient myself, who was very fortunate to receive a single lung transplant five years ago, I think it is shocking that the NHS doesn't accurately know the number of patients with IPF. How can patients expect to get adequate care and how can the NHS plan funding for IPF services when I believe it does not know the size of the problem?"
‘Fit for the Future: Future-proofing care for patients with IPF’ – headline findings
- The rising number of patients with IPF
Incidence of IPF is rising rapidly, with a 35 per cent increase in diagnosed cases between 2000 and 2008.
- An increasingly ageing population
One in five people are expected to be over the age of 65 by 2035. Pressure on IPF services, as a condition which predominantly affects the older adult population, is likely to grow alongside the rate of ageing.
- Challenges in delivering sustainable specialised services for uncommon conditions
Whilst some patients already receive excellent IPF care, variations in access to high-quality care, such as diagnosis from a multi-disciplinary team, persist.
- Difficulties in delivering effective preventative strategies without essential, accurate and definitive data
Now a new approach to data gathering is required so that the real number of patients with IPF may be better understood, to plan the strategies needed to slow and minimise the impact of IPF on patients and their families.
Idiopathic Pulmonary Fibrosis is a progressive, scarring lung disease with no known cure. It gradually destroys the lungs making breathing impossible. Most patients survive fewer than five years after diagnosis.