On 12th July 2016 Action for Pulmonary Fibrosis met members of the All-Party Parliamentary Respiratory Group and other MPs to call for immediate action by NHS England to improve care for patients affected by Idiopathic Pulmonary Fibrosis and to mandate data collection of people diagnosed with the disease.
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 between 15,000 and 30,000 but the number of patients 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.
‘Fit for the Future: Future-proofing care for patients with IPF’ – summary of key 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