Our IPF project

Our IPF charter

Our IPF charter sets out what we're fighting for, and how governments and the NHS can make it happen.

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive and incurable lung disease. Killing over 5,000 people a year in the UK – it is on a par with far better-known conditions such as leukaemia. It often acts with devastating speed, with barely half of patients surviving the three years after diagnosis.

We believe people with IPF and their families have the right to:

  1. Timely and accurate diagnosis and care, involving an appropriately skilled, specialist multidisciplinary team
     
  2. Access to seamless, well-integrated health and social care services, including ambulatory and domiciliary oxygen services personalised to the needs of IPF patients
     
  3. High quality information about the condition, including full details of all treatment, clinical trials, transplant, support and service provision options available to them
     
  4. Specialist palliative care and end-of-life care; supported by the Gold Standards Framework where appropriate
     
  5. Access to dedicated peer support networks, both for patients and their carers, in person or digitally.

We're calling on UK governments and NHS leadership to:

  1. Ensure sufficient funding is made available for the full implementation of the NICE guidelines for IPF
     
  2. Build and resource clinical networks to ensure seamless care between providers at all stages of the patient pathway, and a co-ordinated approach to IPF management including access to clinical trials
     
  3. Increase funding for IPF research to a level that will tackle the considerable, and growing, impact of the disease in the UK
     
  4. Recognise the urgency of need in patients with rapid disease progression, via swift access to specialist care, appropriate prioritisation on transplant waiting lists, and prompt social care assessment and response
     
  5. Conduct awareness campaigns to improve public and primary care recognition of the condition and its symptoms, and encourage employers and providers of insurance, travel and financial services to better meet the needs of people with IPF.

Download our IPF patient charter (PDF, 584KB)