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Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA support group where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved, ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

ILFA's 2000 Steps Challenge - the story so far

Physiotherapist Irene Byrne and ILFA committee member Nicola Cassidy explain how the 2,000 Steps A Day programme has marched from strength to strength since its inception in 2013.

 

Croagh Patrick, the Giant's causeway, Mount Kilimanjaro ... all can be conquered if you start with a single step and build from there. 

Exercise is essential for lung fibrosis patients and walking is the ideal exercise. The Irish Lung Fibrosis Association (ILFA) has always encouraged patients to exercise and have taken every opportunity to promote exercise as a valuable and important treatment to patients and healthcare professionals. But we needed to provide patients with something to get them started and moving ...

The 2000 Steps Challenge for Lung Fibrosis Patients was based on an original idea from Irene Byrne (Senior Physiotherapist at the Mater Misericordiae University Hospital). Over a cup of tea, after a patient information day in Dublin in October 2012, Irene and Nicola Cassidy (ILFA) came up with an ambitious plan - to build a novel, simple and practical exercise programme specifically for lung fibrosis patients taking their health challenges into consideration. Why 2000 steps? ... well, the average person takes approximately 2,000 steps to walk one mile.

Over the next few months, the two ladies discussed, planned, researched and developed the exercise resource. The aim was to deliver a programme that motivated lung fibrosis patients to set attainable goals by supporting them with the basic equipment to get started. We decided to use tools including a pedometer (step counter), instructions on how to exercise safely and manage set-backs, an exercise diary etc.

The 2000 Steps a Day Challenge is s a simple concept suited to patients of all exercise levels because an individual's exercise goal is determined by their baseline step count. This ensures that the exercise programme can be used by those with mild or limited disease who are active and able to engage in exercise, and those with more advanced disease who may be struggling with reduced physical ability.

Patients begin the programme by recording their step count for few days using their pedometer and then aim to add an extra 2000 steps a day to reach a new baseline over the following days or weeks depending on their ability. The great thing about the 2000 steps challenge is that exercise is recorded over the course of the day and can be carried out indoors or outdoors.

The original prototype was tested in January 2012 by a group of very eager and obliging patients from across Ireland. The January weather was not kind but our willing volunteers took their job seriously and some even did their extra steps in an indoor shopping centre. We checked in with the patients to follow their progress and they completed an evaluation questionnaire to tell us what they thought of the programme.

The pilot study showed that;

  •       90% of patients said the written materials were clear and understandable
  •        70% said the programme was easy to incorporate into their daily lives
  •        80% were motivated to exercise every day
  •        90% considered the pedometer a good motivational tool
  •       100% felt a sense of achievement after reaching their target
  •       100% would recommend the programme to another patient

 

IPF patients said the programme was practical and motivational, and helped promote a positive attitude to exercise and increase physical activity despite breathing limitations and oxygen requirements. Here's what some patients said;

  • “Felt very good after walk. The further I can walk, the better I feel.”
  •  “I felt the programme was overall excellent. The pedometer proved to be a great incentive. Not alone did the programme help physical and mental health but it helped me become more focussed on maintaining a healthy weight.”

Following input and feedback from 10 patients who completed the 4-week trial period, the 2000 Steps literature was revised and finalised. We were thrilled with the end result and optimistic that the exercise programme would be embraced by patients and healthcare professionals alike.

The ILFA 2000 Steps a Day walking pack includes;

  • The 2000 Steps a Day leaflet that explains the benefits of walking for lung fibrosis patients and gives advice and tips on how to get started and managing  breathlessness.
  • An inspirational poem called “Promises to Yourself” and a Contract for Success for you to sign and commit to the 2000 Steps a Day Challenge.
  • A pedometer and exercise diary to record progress.

The ILFA 2000 steps a Day Challenge was officially launched in June 2013 with a photo shoot at Fitzwilliam Square in Dublin with Senator Feargal Quinn (ILFA patron), Dublin GAA star Michael Darragh MacAuley (ILFA exercise ambassador), IPF patients; Eileen O’Sullivan, Frank Tierney and Paddy O’Mahony, Irene Byrne, Nicola Cassidy, Terence Moran (ILFA Chairman) and Eddie Cassidy. Everyone was in great form as we smiled for the camera and had fun with various poses and props as you can see in the photos.

In 2014, ILFA was selected to present the '2000 Steps a Day Exercise Challenge for Lung Fibrosis Patients' at the European Respiratory Society Congress in Munich. The work was presented at an educational session called "Latest insights in physical activity, exercise testing and muscles" and was a great opportunity for ILFA to showcase our work to an international audience of healthcare professionals working in respiratory medicine. There was great interest from doctors, nurses, physiotherapists, and researchers alike about the 2000 Steps exercise programme.

In November 2014 we were delighted when the 2000 Steps a Day Exercise Challenge was shortlisted for the Irish Healthcare Award for the Best Patient Organisation Project of the Year. Irene and Nicola got dressed up in their best fancy dresses and went to the ball at the Shelbourne Hotel in Dublin. Our category was the penultimate award of the evening and when they called out "And the winner is the Irish Lung Fibrosis Association" ... we couldn't believe it ... we won!!! We hugged each other with excitement and disbelief, and somehow managed to make our way to the stage to collect our trophy. What an amazing result and a very special honour for ILFA! This award is wonderful recognition for our hard work and the contribution of the 10 patients who helped with the 2000 Steps a Day pilot study. 

Since its launch in 2013 the 2000 Steps Programme has gone from strength to strength. Additional practical    resources have been added to the pack including the STALL breathing technique card (2014), the ILFA Exercise DVD (2015), the hand-held fan (2016) and the ILFA Yoga DCD (2018). The programme is being used by lung fibrosis patients and healthcare professionals all over Ireland and the packs are being sent out every week. 

We are very proud of the 2000 Steps a Day programme and delighted to know that it is helping lung fibrosis patients to exercise well and safely. This resource is still the top item requested by patients and healthcare professionals contacting ILFA.

Remember ..."The journey of a thousand miles begins with one step” - Lao Tzu

 

An article by Irene Byrne and Nicola Cassidy (2017)