Welcome to your support group

Welcome to the Northern Trust Pulmonary Fibrosis Support Group which is open to patients, relatives and friends. You are all welcome to join us for a regular, friendly and supportive chat over a ‘virtual’ coffee or tea.

We endeavour to keep our members up to date with current developments in pulmonary fibrosis treatments and news. Information is provided on best practice and care. We give advice on upcoming events, webinars and other educational events to help inform our members and their families. When available we invite guest speakers to our meetings who give advice on a variety of health related issues from dietary to physical and mental well-being. We will signpost members who require assistance with benefits and other forms of support.

We believe that we are a strong support group, with members at different stages of their pulmonary fibrosis journey. We try where possible to buddy up members so that they can form bonds with other members.  We have people from a variety of backgrounds and age groups; each prepared to reach out to help other members.

The Northern Trust Pulmonary Fibrosis Support Group is active in trying to raise funds to help in the research to find a cure for forms of PF and welcomes you to help us in that endeavour.

Currently we can only meet via zoom; this we do every two weeks. We also have a dedicated carers zoom call every two weeks to enable carers to ask questions and discuss their issues and concerns.

If you have any queries please do not hesitate to contact us by using the contact form on this website.

We look forward to meet you at our next meeting.

Top Tips for living with Pulmonary Fibrosis

Why is important to be active EVERY DAY?

Exercise training has been proven to be a safe and effective behavioural intervention for prevention and rehabilitation of chronic conditions.

Despite the complexity of the signs and symptoms presented in IPF, supervised exercise training is a feasible and effective treatment for clinical improvement.

Emerging data show significant enhancements in exercise capacity, dyspnoea and quality of life among IPF patients after exercise training interventions.

Handheld Fans

Can handheld fan help my breathlessness?

When breathless, you may instinctively go to an open door or window to ‘get some fresh air’. In a similar way, a cool draught of air from a handheld fan can reduce the feeling of breathlessness. The fan can therefore be seen as a ‘portable breath of fresh air’.

The following may also help ease breathlessness:
– A cool flannel or cool water mist spray to the face.
– Opening windows, for example in a car.
– Desktop or floor standing fans.

Fans with three or more rotating blades seem to be most effective as the airflow is stronger. Some people have to use the fan for just a minute, others for 10 minutes, before they feel their breathlessness ease. The fan can be used at the same time as nasal oxygen. People using face mask oxygen have commented that cooling the cheeks, neck and upper chest with the fan helps to ease their breathing.

You can find out more about handheld fans on Guy’s and St Thomas’ Foundation trust website.

Helpful Tips

Things that I need to do to stay as healthy as possible:

  • No smoking.
  • Minimal Alcohol.
  • Avoid symptom triggers. (Things that make you feel worse). For example: second hand smoke. There may be other triggers like air conditioning, high altitudes, or air air travel everyone will be different.
  • Exercise as much as possible.
  • Eat healthy (Maintain a Nutrition Diet).
  • Loss or gain weight with doctor advice.
  • Avoid other people with chest or other infections.
  • Find a local PF support group and become a member.
  • Learn to relax as much as possible.
  • Ensure you take your medication exactly as prescribed.
  • Ensure you and you carers have your annual Flu Jab.
  • Socialise with others.
  • If sign of a chest infection, visit your GP immediately.
  • Get plenty of rest. This preserves your strength, lowers stress and makes breathing easier.
  • Use assistive devices, when you need them.
  • Get support as you need it. It is very important to accept emotional backing from family and friends. By attending a support group you can talk to others who are going through the same things as you.
  • Keep your home at a healthy temperature, cool in summer, warm in winter.
  • Get someone to drive you to hospital appointments.
  • Follow all advice given by health care professionals.

Things to avoid:

  • Passive smoke or any smoke environments.
  • Person with chest infections, flu or heavy cold.
  • Walking in strong winds as this could affect breathing.
  • Area of heavy dust.
  • Directly inhaling aerosol products.

Things that others can do to help me:

  • Ensure that I take my medication as prescribed.
  • Keep away if carrying an infection.
  • Exercise with me.
  • Check my diet.
  • Use antibacterial hand gels and antibacterial cleaners around the house.
  • Drive me to and from hospital appointments.

Helpful information

Ron and his wife & carer Maxine’s IPF story

Questions to ask your doctor or consultant on diagnosis with Pulmonary Fibrosis.

You may be a little nervous when talking to your medical team at the hospital. It is a good idea to take someone with you who can help and support you – a family member or friend.

You could go armed with a notebook and pen to keep notes of what is said. Most of all please remember that you are entitled to have your questions answered fully – and to be given time to take it all in and to leave appointments with as much information as possible.

Before diagnosis

  • What tests will I need?
  • What will the tests involve?
  • Will I have to stay in hospital?
  • How long will it take to get the results?

After diagnosis

Coping with pulmonary fibrosis

  • Where can I get more information about the disease?
  • Is there any support available for me and my family?
  • What can I do to help myself?
  • Is there a patient support group nearby you could refer me to?
  • Are there pulmonary rehabilitation classes you could refer me to?
  • Is there a nurse who I can phone from home, if I am worried about anything?
  • Palliative care and symptom support