It’s important for both of you to be aware of any worsening of symptoms as this can help your loved one's treatment team decide what you should do in your home, at the health care provider’s office or in the emergency room.

Whether your loved one has just been diagnosed with pulmonary fibrosis or has been living with it for years, it is important that you have a clear plan in place for the future to help give you some peace of mind.

Checklist for future-proofing a pulmonary fibrosis care plan

Get support from the treatment team at a specialist centre¹

It is vital that your loved one seeks access to specialist clinical support early on. They can help support give them the most effective treatment. Speak to your loved one’s treatment team to find out if there is a specialist centre near your area

Access information about the right treatment for your loved one as early as possible²

It is important that you and your loved one have access to all the information you need to understand the different treatment options available

Help set up an assessment for pulmonary rehabilitation³

Pulmonary rehabilitation can help patients feel more in control of their condition. It can support patients to feel more independent, and improve their symptoms and general fitness
Pulmonary rehabilitation is also likely to contribute to an improved quality of life for most patients with pulmonary fibrosis

Encourage your loved one to access oxygen therapy, if recommended by their treatment team, to improve mobility and reduce breathlessness⁴

For those it is recommended for, oxygen therapy can help patients breathe easier and so feel they are able to live a more normal life
Oxygen therapy can help patients, who otherwise may have been too unwell, to complete a course of pulmonary rehabilitation
Oxygen therapy can help with symptom control

Seek access to a specialist nurse who can help coordinate care⁵

Patients need to make informed decisions about their pulmonary fibrosis treatment and management
Regular follow-up appointments, coordinated by a specialist nurse, can keep you and your loved one informed about ongoing treatments and the available options. They can also give access to supportive care if needed

Seek access to supportive (palliative) care⁶

As a carer, you should be supported to help you in your role and make sure your loved one receives the support they need to manage their symptoms. You can also consider a plan for supportive (palliative) care

QUICK TIP

Talking about and making preparations for all of these things can sometimes be stressful and tiring. Don’t feel like you have to do it all at once. Care planning is an ongoing activity that sometimes takes time

Thickett DR, Kendall C, Spencer LG, et al. Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion. Thorax. 2014;69(12):1136–1140.
Ramadurai D, Corder S, Churney T, et al. Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'. BMJ Open Qual. 2017;7(1): e000207.
Swigris JJ, Fairclough DL, Morrison M, et al. Benefits of pulmonary rehabilitation in idiopathic pulmonary fibrosis. Respir Care. 2011;56(6):783–789.
Graney BA, Wamboldt FS, Baird S, et al. Looking ahead and behind at supplemental oxygen: A qualitative study of patients with pulmonary fibrosis. Heart Lung. 2017;46(5):387–393.
Duck A, Spencer LG, Bailey S, et al. Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs. 2015;71(5):1055–1065.
Sharp C, Lamb H, Jordan N, et al. Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis. BMJ Support Palliat Care. 2018;8(3):340–346.