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Frequently asked questions (FAQ)

Prior to setting up this webpage, we asked our patients in clinic what information they would like to know and which questions they would like answered via our website. This page has been created based on the feedback we kindly received from those who completed this questionnaire alongside feedback from members of the multidisciplinary team. 

When to call the GP vs when to call the nurse specialist?
If you have noticed a sudden worsening of your symptoms, for example, symptoms of increased breathlessness or cough over 1-2 weeks, we would usually advise you to see your GP in the first instance. The GP will be able to inform you if treatments such as antibiotics are needed or if further discussion is needed with the specialist ILD team. Should there be a gradual worsening in symptoms and you're worried or unsure, please contact our nurse specialists for advice.

If you are unwell over the weekend or out of hours and feel you need to be seen urgently- please contact NHS Wales 111.

If you have concerns about specific ILD medication, for example, anti-fibrotic medication or immunosuppression, please contact our specialist nurses. For example concerns about side effects or dose adjustments. You can also read about specific medication in the treatment section of this website.

ILD Specialist Nurse : 02921826419
Please leave a message with your name, date of birth and if possible hospital number and brief description of your query. The nurse specialist will ring you back at the earliest opportunity . Please note this number is not checked on weekends or bank holidays.

Will I need oxygen therapy?
Not everyone with ILD will need oxygen therapy. Some patients may need oxygen therapy in the future if their disease progresses. We will continue to assess this when you are seen in the clinic. Unfortunately, oxygen does not specifically help with the symptom of shortness of breath alone and is only a treatment that is used when the oxygen levels are persistently low. For more information about breathlessness, please click here or see the ILD self-management section of our website . For more information about when oxygen might be used and how it is used, please click here.

How quickly will my condition deteriorate?
Prognosis varies depending on the underlying condition causing ILD. Living with ILD there is a lot of uncertainty about what the future may hold, which can be very challenging.

In idiopathic pulmonary fibrosis or IPF, the speed of deterioration is highly variable from person to person. In some people, the scarring of the lung develops quickly and in others it will develop over a longer period of time. We don't yet know why this happens therefore it is very difficult to predict how long someone with IPF will survive at the time of diagnosis. Regular monitoring over time can indicate whether it's getting worse quickly or slowly.


Are there any ILD / pulmonary fibrosis charities?
Yes, there are many ILD charities and groups. There are local representatives from the charity who do come along to some of our local support group meetings.
- Action for pulmonary fibrosis
- Asthma + Lung UK 
- Pulmonary Fibrosis Trust
- Sarcoidosis UK

Am I entitled to any benefits?
If you’re living with a long-term illness like pulmonary fibrosis, you may be entitled to support from the government and other organisations. Applying for benefits can be very confusing. Action for pulmonary fibrosis has lots of free guidance and advice detailing what you may be entitled to. Please click here to see further information from action for pulmonary fibrosis.  Asthma + Lung UK also have a dedicated section of their website which outlines what types of financial support or benefits you might be able to get if you’re living with a lung condition in the UK. Please click here for further information from Asthma + Lung UK.

Claim forms can sometimes be very confusing to complete. 
The following organisations can have specialist advisors who can help:

Other financial help- 

Travel

  • You can get a bus pass for free travel if you’re disabled – contact your local council for details.
  • You may be able to get a blue badge for on-street parking
  • A Disabled Persons Railcard reduces the cost of train travel
  • The Motability Scheme provides an affordable, worry-free way for people with disabilities to lease a car, scooter or powered wheelchair in exchange for their mobility allowance.

Energy 


How do I arrange travel insurance?
Travel insurance with a lung condition | Asthma + Lung UK (asthmaandlung.org.uk)
Holidaying with pulmonary fibrosis | Action for Pulmonary Fibrosis (actionpf.org)
Information and resources on current cruise line regulations in place for those on oxygen – Action for Pulmonary Fibrosis (actionpf.org)

Am I entitled to compensation from asbestos related lung disease?
Benefits and compensation for asbestos-related disease | Asthma + Lung UK (asthmaandlung.org.uk)
AASC Cymru 

 
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