We need to work together for IPF

Anne-Marie explains the importance of fighting IPF as a community.

When I was a lecturer in university an opportunity came up to work on a funded research project in interstitial lung disease (ILD). My background had been mainly in primary care and family health so this was a new and exciting opportunity.

Working with people diagnosed with ILD and their families was a deeply moving experience – their commitment to help with research was notable. I was overwhelmed by the positive attitudes that people with IPF held in the adverse circumstances of receiving such a devastating diagnosis.

I’ve spent the last decade researching interstitial lung diseases, with the last four years of my work focussing on idiopathic pulmonary fibrosis (IPF). It really is a privilege to work with patients diagnosed with IPF and their families.

During IPF Week it’s really important to come together and campaign for greater awareness and research.

Unfortunately we don’t know a lot about IPF.

We don’t fully understand what causes it, or why everybody has different experiences. We do know that around 5,000 people are diagnosed with IPF every year in the UK – and that this number is increasing.

We also know that sadly, about half of people will only live for around three years after their diagnosis. People with IPF can feel breathless from simple everyday activities like walking and they often feel tired and develop a bad cough.

There are currently no treatments that can completely cure IPF. There’s a therapy available which can slow down the progression of the condition - but this can have difficult side effects.

Working together

Improving the outlook for people with IPF is a big challenge. That’s why it’s so important for us to work together to help people to get more out of life and to live longer. Scientists need to continue to work as a community to understand what causes the condition and how it progresses in different people.

Working together I hope that we will be able to take the 'idiopathic' (which means unknown) out of IPF within the next decade. Until we get to that point we need to find ways to encourage people to manage their condition as much as possible and to give them access to excellent care when they need it.

It’s vital we make sure that people affected by IPF understand how they can get involved in our work, and to give them the chance to share their stories. By listening to their voices, we can learn so much more about this condition and make changes to IPF care that really improves their wellbeing.

Staying positive

My work involves exactly that - listening to the views and experiences of people with IPF to learn more about their needs during treatment. By speaking to so many different people with IPF, I’ve discovered that everyone has their own way of looking at the condition.

We need to consider this when we talk about what IPF means for them and what their future might hold.

The things we discuss and the treatments we choose should be tailored to each person, depending on what they want to know and what they are most comfortable with. We need to help them feel positive and empowered about managing their condition so they can have a better quality of life and better treatment outcomes.

As a member of the British Lung Foundation’s IPF advisory group, I get the chance to pass on those experiences to help shape the information and support people with IPF receive. I’ve also contributed to the BLF’s research strategy.

It‘s important to work with charities, people who have IPF, their families, physicians, nurses, GPs and palliative care teams to identify what matters most to them and how to create the most effective IPF research programmes.

Changing the outlook for people affected by IPF is not going to be easy. But by working together we can make sure there is the best possible chance for us to win this fight against a devastating disease.

This week is World IPF Week. Can you do your bit by donating to our IPF Week appeal?


Comments

Hi Bryan - have you tried calling our helpline? They might be able to offer you some advice. The number is 03000 030 5555
I think this disease is horrible, I was diagnosed approx 3 yrs ago and as part of Royal Bromptons Research I tried Pirfenidone which I am assured helps some but alas not me, nasty side effects. After many many various treatments nothing seems to be slowing it down and am finding it very difficult to walk far or perform menial tasks through breathing problem and muscle fatigue. I have taken Ill Health retirement from work as could not perform my daily tasks as I would like. I live near Heathrow Airport and have been trying to find a Pulmonary Rehab class nearby to see if it can help me but when I contacted them they thought I was a heart case so I am doubtful if they would know how to treat me as IPF is not a heart problem. Anyone out there got any ideas or info ?
my mother was diagnosed in june of this year. having read so much about it, I declare it is a frightening disease. no known cause, and no known treatment.i now see my mum in the hospital, with diabetes and a recent heart attack, gasping for life,wearing oxygen with nasal prongs,and I feel so so sad.
I welcome and commend the BLF's IPF awareness week. I lost my father to IPF four years ago. At the time and throughout his illness he experienced a lot of ignorance and consequential misfortunes - most notably from a PCT in the UK and its outsourced/contracted oxygen supplier. In fact, as result of their failings and lessons learnt from my father's experience, respiratory nurses were introduced to help the patient liaise with the oxygen supplier, some of the bureaucracy reformed (HOOFs cancelled that caused further delays and inadequate tubing) and the contract with the oxygen supplier ended. The BLF provide vital knowledge and support. More research and awareness is seriously needed into IPF: into its causes (is it occupational and/or auto immune? What is the situation around the world? It would be beneficial and cost effective to work together with other countries also since it is such a rare and little known illness); and how best to treat its patients to enable a good quality of life (and be able to travel to different regions under different PCTs without fear if problems arise). My father had his hopes on receiving Perfenidone, but it was released in Europe just after his death. I understand it may not have helped but we thought it would at least alleviate his suffering and prolong his life. These uncertainties and stress that the patient and their families go through needs to be addressed also. Significantly, the carers (my mother in this case) also suffer due to many uncertainties and responsibilities. So thank you to the BLF for raising awareness and starting these discussions - this alone is of great help. Best regards
Sadly, I lost my Dear Mum to IPF, 3 year's ago. At the end of her life, the Doctors did not appear to know what the cause of the deterioration was, and she was told that it was Angina, or Thrush of the Oesophagus or even a Hiatus Hernia, even though she had been diagnosed with IPF 9 year's earlier. At the time, Mum was referred to the Rapid Assessment Team at our local Hospital, and although they carried out tests on her the week before she died, they did not appear to realise that she was dying, and they provided her with a Nitroglycerin Spray. She was due to go back to the Rapid Assessment Clinic on the day that she sadly passed away. Mum died at home with her 3 grown up children present, and I can only describe the whole experience as a complete trauma for us all, a trauma that we are still coming to terms with. I still feel very let down with the lack of support that Mum and ourselves received. There is definitely a need for more awareness, research and better care pathways, because from our experience the care pathways were poor, disjointed and thoroughly inadequate, and I speak as an individual that has worked within the Health and Social Care System for many years. There is a lot of work to be done in my view to provide the support to sufferers and their families.
I would heartily endorse Anne Marie's comments. The way I look at it is that idiopathic means "nobody knows". I work in the computer database industry where we have a concept called a NULL. This basically means that we don't know the answer. But just because we don't know the answer to two questions and we use a NULL as the answer doesn't mean that the two answers are the same. A NULL is never equal to a NULL. Also a NULL is also never not equal to a NULL. Similarly if two patients have an idiopathic condition we cannot assume that the cause or the treatment will be the same. Too many people are looking for one treatment that solves IPF. There won't be one.

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1 October 2014