Interstitial lung disease is group of conditions affecting the tissue of the lungs.

This can involve scarring (fibrosis) or inflammation (pneumonitis). These can make the lungs stiffer and less efficient. Common symptoms include breathlessness and cough.  

There are many different types of ILD. Examples include:

  • Idiopathic pulmonary fibrosis
  • Hypersensitivity pneumonitis
  • Sarcoidosis
  • Asbestosis

But there are many more.

Each problem may need different treatments and has a different prognosis / outlook. 

Healthcare professionals, support groups, and charities work together to help you with interstitial lung disease (ILD).

A diagram listing all of the people involved in care of ILD.

The key specialists likely to care for you are:

Dr Sarah Haney - consultant respiratory physician

Dr Mark Weatherhead - consultant respiratory physician

Emma Payne - ILD nurse specialist

Stephen Foster - physiotherapist

The ILD team works together to help better understand your symptoms. This includes what has caused them and what treatments could help you to control them.

They key specialist teams include: 

  • Doctors
  • ILD nurses
    • The role of the ILD nurse is to support patients and their families and carers. They help make sure you get all the information you need throughout your journey. We can also help you to access others services. This could be occupational therapy or specialist benefits advice.  You may meet us during your first appointment with your ILD consultant. You may meet us in a nurse-led clinic. You can contact the support line on 0191 293 4148. The ILD nurse works within a large team of lung nurse specialists. They will provide cover during absences. You may meet other nurses at your appointments.
  • Physiotherapists
  • Dietitians
  • Oxygen team

You will usually be referred by your GP or another respiratory team member.

We run specialist ILD clinics at Wansbeck, North Tyneside and Hexham hospitals.

Your first appointment will be a consultant-led clinic. Follow-up appointments may be with the specialist ILD nurses or doctors. This depends on your needs.

The consultant-led clinics are multidisciplinary clinics. This means you may see more than one person at the clinic visit. You will see the doctor.

Depending on your needs, you may also:

  • Have lung function tests, to see how well your lungs work
  • A chest X-ray, to check if you have scarring on your lungs
  • Have blood tests, to check for autoimmune disease
  • See the physiotherapist, to look at your breathing pattern
  • See the specialist nurse
     

Please allow plenty of time for your appointment. If you can’t manage all the tests on the same day, we can arrange for you to come back at a later date.

Sometimes we can give a diagnosis on the day. Often we need to wait for the results of specialist blood tests or scans.

We will often discuss your care at a meeting where the respiratory doctors, specialist nurses and radiologist come together (with extra advice as needed).

We will look at your symptoms and medical history. This may include:

  • Your main symptoms, including coughing and breathlessness
  • Jobs you have had. Particularly where you may have been exposed to asbestos, dust from wood or stone, metals, birds or animals
  • Your hobbies and pets
  • Smoking
  • Family history of lung disease
  • Your general health

Treatments for ILD depend on the exact type and stage of your disease. 

Treatment often involves medication. The right medication depends on the exact condition, how it is changing and any other health conditions. 

Medications can involve:

  • Steroids or immune suppressant medications for more inflammatory conditions
  • Antifibrotic medications for progressive scarring conditions
  • Cough suppressants and mucolytics to aid sputum (mucus) clearance
     

Many people with ILD also benefit from other treatments including:

  • Pulmonary rehabilitation, an exercise programme to support people with lung disease to stay active
  • Physiotherapy for support with managing breathlessness and sputum (mucus) clearance
  • Oxygen therapy, which aims to reduce breathlessness and increase physical capacity through improving gas exchange in the lungs. 
  • Nutritional advice, to help you achieve a healthy weight (BMI of around 20-30).   Excess weight can increase shortness of breath and put a strain on your heat, while being underweight can decrease your energy levels and make you more susceptible to infection.
  • Stop smoking support (smoking cessation)

You may also benefit from support from:

  • Occupational therapy
  • Palliative care
  • Clinical psychology 
  • Charities and support groups
  • Travel advice. It is quite possible to enjoy travel abroad even with quite severe lung fibrosis. It may need extra assessment and planning, especially for air travel. Please contact the specialist nurses for advice.
  • Benefits support (See Useful links section below)

You may be asked if you want to take part in the national lung fibrosis registry or in research studies. Taking part is your choice. If you don't want to take part, it will not affect your other care.

While medications can help bring down inflammation, scarring caused by ILD is permanent.

If you have an underlying disease, management might help prevent further damage.

If the cause is unknown, your healthcare team will treat your symptoms and try to prevent further damage.