Norfolk & Norwich

Pulmonary Fibrosis Support Group

Autumn Meeting – 20th October 2018
September 15th-23rd was IPF world week, with national and international pulmonary fibrosis
groups holding events to raise awareness of idiopathic pulmonary fibrosis to encourage research
into fibrosing lung diseases to be given the priority it deserves. Whilst the focus has been IPF, if
we can improve services for the diagnosis of IPF, other types of lung fibrosis also stand to
benefit as the spotlight highlights the common diagnostic pathways and similar problems faced
by those living with these diseases.

Sam Cooper and her

husband are members of
our support group and
Sam and her colleagues
held a cake sale at work
for IPF week, raising a
fantastic £215 for Action
for Pulmonary Fibrosis,
doubled by her
employers to a whopping
£430!! Congratulations
and many thanks for
your efforts and support
Sam.

Fundraising and awareness events do not have to only take place in September though – the
charities are happy to provide advice and merchandise for anyone wishing to support the cause.
So if you or your family and friends want to hold a quiz, party or coffee morning, an outdoors
challenge or whatever takes your fancy do contact them and feel free to share your pictures with
us!

I confess to having struggled to find time this year to organize anything on behalf of the group.
As some of you know, I have had a number of family commitments in recent months, not least
my middle son’s wedding at the end of September, which rather preoccupied me for IPF week!
The weather was very kind to us and the day was lovely – these are just a couple of the many
photos of my sons and new daughter-in-law, which I am taking the liberty of sharing with you!

Best wishes, Sandra

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 Coping with Cough
Laura Grimsey, Senior Physiotherapist, NNUH
Laura is a physiotherapist who has spent a considerable
amount of time working with people with respiratory
conditions, both in the respiratory wards at the Norfolk &
Norwich Hospital and at pulmonary rehabilitation, where
some of you may have met her.

Our physiotherapy colleagues have a lot of expertise in

helping people to develop skills and techniques to cope
with the day-to-day symptoms that result from lung
problems. We know cough is common and troublesome for
many people; surveys (including the one many of you
kindly returned for Professor Wilson recently) show that
cough affects 70-85% of people with lung fibrosis, and that,
compared to other conditions that cause cough like COPD
and asthma, it causes more distress (rated on a 0-10
scale).

For people with pulmonary fibrosis, a persistent cough may

be one of the first signs that something is not right. It is
often a dry tickly cough, but can also be a ‘wet’ cough, when it feels as though there is phlegm to
cough up. Everyone’s cough will be individual to them but even one person may have a different
cough at different times of the day or if they have chest infection.

Laura explained that a cough is only effective if it clears phlegm (sputum) from your chest. A
cough that is dry is described as an ineffective cough. Ineffective coughing should be avoided –
it is very tiring, puts strain on the vocal cords and pelvic floor muscles (the ones that help us with
bladder control!) and can actually make it harder to clear sputum.

Frequently clearing your throat or coughing causes

the vocal cords to snap together and pull apart
forcefully. This triggers the production of mucus to try
to protect the vocal cords and in the longer term can
lead to damaged vocal cords and continued
production of mucus, which of course makes the
feeling of needing to cough even stronger. There is no
‘quick fix’ to stop a persistent cough but you are the
best person to know what triggers the cough and you
can learn different methods to suppress the cough
and see which one works best for you. You need to
practice your chosen technique regularly so that you
can use it confidently to break the coughing cycle.

Laura suggested that when you feel you want to cough, ask yourself whether it is a wet, phlegmy
cough or a dry, tickly cough?
If it is a dry cough, use the “Stop Cough” exercise:
• As soon as you feel a cough, put your hand over your mouth
• Swallow once
• Take a small breath in and out through your nose
• Hold your breath for a few seconds, then relax and tell yourself you are not going to cough
• Take a smooth, normal size breath through your nose and take your hand away from your
mouth
• If you still feel a tickle, repeat the exercise.
This exercise helps because breathing through the nose slows down the air coming into the
lungs, giving it time to be warmed and moistened in the nose before going down the windpipe,
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 causing less irritation to the vocal cords and the cough receptors in the throat and upper airways.
Imagine you have an itchy gnat bite – scratching the itch makes it itch even more as the bite gets
more inflamed but if you can ignore it for a little while, the itch goes off. Cough is just the same
but this does take practice and might not work straight away. You may not be able to get rid of
the cough altogether but if you can reduce the frequency and feel that you are a bit more in
control, that can really help so keep trying until you can break that cough habit!

Other tips to suppress cough:

• Have a bottle of water to hand so that you can keep sipping at it.
• Keep telling yourself you don’t need to cough.
• Ask those who are with you regularly to tell you when they hear you clearing your throat –
often it has become such a habit, you may not be that aware of when you are throat clearing.
• Try swallowing hard if you feel the need to clear
your throat.
• If you still need to clear your throat try a ‘huff’ as
if you are steaming up a mirror.
• Try sucking hard sweets or ice cubes, or sipping
a very cold drink.
• Mints or mint drinks may help – mint or menthol
stimulate swallowing and suppress the cough
reflex, whereas chilli, cinnamon and citrus have
been found to stimulate the cough receptors.
• Breathe in and out gently through your nose, or
sniff in through your nose 2 or 3 times then gently out through pursed lips.
• Think about your position – bending down increases the pressure on your lower chest and
stomach and can increase cough as can laying flat on your back.

What about if your cough is wet? Some people always have some sputum and if you do, it is
important to try to clear it – bugs love the warm, wet environment in your chest and mucus
provides a perfect breeding ground for bacteria. Clearing sputum from your airways can help to
prevent chest infections and by regularly clearing your chest, your breathing can feel easier and
you are less likely to cough throughout the day or night.

Using a simple pattern of breathing exercises, called the Active Cycle of Breathing Technique,
can help to loosen and move sputum from your airways and reduce the amount of effort needed
to clear your chest.

Start by finding a comfortable position with the shoulders down and relaxed.

Stage 1: Breathing control

This is relaxed gentle breathing with as little effort
as possible.
Rest a hand on your stomach and breathe in and
out gently, through your nose if possible, feeling
your hand rise a little as you breathe in. The top of
your chest shouldn’t be moving very much, so your
diaphragm (the big breathing muscle between your
lungs and your abdominal organs) is doing most of
the work. This is the most energy efficient way to
breathe and allows your airways to relax.

Stage 2: Deep breathing

Breathe in through your nose slowly and deeply,
keeping your shoulders and upper chest relaxed.
Hold your breath for 2-3 seconds, then breathe out
gently through your mouth. Repeat 3 times. Don’t
repeat if you are starting to feel dizzy and go back to relaxed breathing control (Stage 3). You
can repeat stages 2 and 3 several times – this helps to get air through the tiny networks of
airways in your lungs so that air gets behind any sputum sitting in the airways.
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 Stage 4: Huffing
A huff is a breath out through an open mouth and throat – it is not a cough! Don’t force air out
hard so that you hear a wheeze - the action is the same as if you were trying to steam up a
window or clean your glasses.
Huffs can be different sizes depending
where the sputum is.
A small huff needs a small to medium
breath in and then huff air out until the
lungs feel quite empty – this helps to
move sputum up into the larger airways.
A big short huff is useful when the
sputum is higher up in your chest – take
a deep breath in and huff air out quickly.
Huffing can be quite tiring so don’t do
more than 2 or 3, then follow with relaxed
breathing control again.

Stage 5: Coughing
You may be able to clear your sputum by huffing making coughing unnecessary so only cough if
you can feel sputum right at the top of your chest and it can easily be cleared. If it doesn’t come
up with 1 or 2 coughs go back to the beginning of the cycle. Try to avoid bouts of coughing,
which are tiring and stress the breathing muscles, pelvic floor muscles and vocal cords.

Information leaflets on the Cough Suppression and

Active Cycle of Breathing techniques (and lots of
other information leaflets) are available via the
hospital website http://www.nnuh.nhs.uk, information
for patients and visitors and then clicking on the link
for Patient Information Leaflets.

Some other more general things to think about are

thinking about what triggers your cough – is it worse
at a particular time of day? After eating or drinking?
Or if you go out in the cold? Does talking or being
exposed to strong smells set it off? You may not be
able to avoid all the things that make you want to
cough but if you can be a bit prepared and let those
around you know, you might feel less anxious about
the risk of setting off a coughing spell.

If you have a productive cough in the mornings – could you have some reflux from your
stomach? This is quite common in fibrosis – you may not have symptoms of acid or indigestion if
you are taking a regular medicine like Omeprazole or Lansoprazole but if you lay fairly flat on 1
or 2 pillows at night, it is possible that some of the stomach contents (or gas coming from the
stomach) will end up in the airways, irritating them and stimulating more mucus to be produced
resulting in more cough and sputum and possibly worsening the damage in the lungs. Try
sleeping propped up at about 45 degrees so that gravity keeps the stomach contents in your
stomach. The ‘guts charity’ website has a useful information leaflet about heartburn and reflux.

If you know going to answer the phone makes you cough, making talking difficult, warn friends
and family that you just need a couple of minutes to get your breath back and that you might
need to stop talking every so often. Similarly, let people know if strong perfumes, scented
candles or aerosols cause you a problem – most people won’t mind if they know how difficult it is
for you. And, of course, it goes without saying that it makes sense to avoid being near smokers –
tobacco smoke can really irritate the airways and increase cough.

If a change of temperature or humidity triggers a cough, try keeping your nose and mouth
covered when you go out in the cold, take your time going from one environment to another and
avoid extremes of temperature if you can.

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 Cough syrups may help soothe a tickly cough but they are a
bit of a case of trial and error. For some people, codeine
linctus may help a bit but often old-fashioned warm water
and honey might be as effective. See what works for you
but if your cough is a bit loose and rattly, don’t try to
suppress that – it is better to use the techniques described
to clear it.

If you are struggling with cough, do talk to your doctors or

nurses – you can be referred to the respiratory
physiotherapists for advice and help learning some
strategies to help you cope.

And do think about talking to your fellow members – you

are all living with these conditions and are very likely to
have tips you can share with others. There were some
really good questions from the floor, which I hope Laura
and I were able to help with, but I’m sure many of you have
experience that has helped you that others could benefit
from. If anyone would like to share their tips for managing
symptoms day-to-day, do drop me a line – perhaps we can have a ‘Members tips’ column in the
next newsletter?!

Website recommendation – pulmonaryfibrosisnews.com

https://pulmonaryfibrosisnews.com
I discovered this website quite by chance as every couple of months I Google Idiopathic
Pulmonary Fibrosis (IPF) to see what new developments there are with this illness.
Once I looked at this website my husband and I have found it very useful. There are a lot of
articles that you can read about IPF looking at the illness from different viewpoints.
There is also a forum you can either participate in or just read the threads between other people
that IPF affects, either as a person with IPF or as a carer.
Both my husband and I have signed up to the website, so we receive regular updates. It is an
American website but a lot of it, I feel, is still relevant. I especially like the forum part – I haven’t
participated in any of the online chats yet but I find it helpful that other people are experiencing
the same issues as us, wherever they are in the world regardless of age or sex.
Although the majority of healthcare professionals we have encountered have been excellent and
compassionate they cannot understand what or how you are feeling (nor would I want them to)
but the website gives you the chance to speak/read about other people’s experiences with IPF
which we have found helpful.
I hope it also helps you too in some way. Sam Cooper (wife and group member)

Interested in training future Doctors?

NNUH consultants lead teaching sessions for UEA medical students, which take place in the Bob
Champion Research & Education Building. Students watch and practice patient consultations,
learning how to take a history and examine patients under the supervision of a senior doctor.
Volunteers with a respiratory condition are always in demand and most patients enjoy the
experience, which is of such value to the students.

The sessions last 1.5-3 hours and volunteers receive reserved parking, expenses and light
refreshments. Talk to your consultant, give me a call or contact Caroline Coombs, UEA School
of Medicine Administration Assistant on 01603 286618 or email caroline.coombs@nnuh.nhs.uk.

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 Research Update
Clinical research is vital to further the development of many new and better treatments that will
benefit patients. Whilst lots of research is carried out in the laboratory, it is the involvement of
patients that provides us with the best evidence for effectiveness of treatments we use in the
clinical setting. For many patients, taking part in research can be an exciting opportunity, helping
to change and shape the future of medicine by allowing us to improve our understanding and
knowledge in a wide range of conditions that affect the lungs and the best ways in which they
should be treated.

The respiratory research group at the NNUH/UEA, is a busy and thriving department led by
Professor Andrew Wilson, which has links to many other university hospital research teams
across the UK. Many of the studies we help take part in form part of national and international
clinical trials. We are always looking for patients to take part and become involved with research
and below are just a few of the studies for patients who have interstitial lung diseases such as
idiopathic pulmonary fibrosis (IPF):

The Celgene Trial

This study is available to all patients who have been diagnosed with IPF who are not currently
being treated with either Pirfenidone or Nintedanib. The study is hoping to find out if a new
medication can help slow down the rate at which lung scarring occurs and the rate at which a
person’s lung function declines.

The TRAIL1 Study

This study is looking to see if Pirfenidone, used in the treatment of IPF, is also helpful and
beneficial in patients who have interstitial lung disease as a result of rheumatoid arthritis.

Breath Gas Capture Studies

We have recently started two further studies, in which we aim to see if we can detect specific
patterns of chemicals in exhaled breath from patients with sarcoidosis or idiopathic pulmonary
fibrosis. We are hoping that this might provide us with a new way of monitoring these conditions
alongside the current ways which involve breathing tests and chest x-rays.

The sIL2R in EBC Study

This study is looking to see if we can measure a specific chemical called soluble interleukin-2
receptor in the exhaled breath from patients who have recently been diagnosed with sarcoidosis.
This might help us to see how active a persons sarcoidosis is.

The Idiopathic Pulmonary Fibrosis Job Exposure Study

This study is looking at whether a link can be identified between previous employment and IPF.
It is asking men diagnosed with IPF since February 2017 to take part.

Even if there is not a suitable study for you at the moment, the team can keep your details on
file if you are interested in taking part in future research. Whether you decide to take part in
research or not is always entirely your choice and never affects your usual follow up or
treatment in the respiratory clinic. Where possible the research team try to coordinate the times
they need to see you with when you are already attending hospital appointments. Progress in
understanding and treating illnesses is hugely helped by the participation of patients, and in
some studies carers too, and many people enjoy the opportunity to be an important part of the
research team.

If you would like to be involved in any of the above studies or any of the other research we take
part in then please contact the research team on 01603 289876.

NNUH/UEA Respiratory Research Team

Professor Andrew Wilson, Dr Dayle Terrington, Research Nurse Garth Ravenhill

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 Group News
I was delighted to welcome so many new members to our October
meeting. We had over 60 people at the meeting and I hope
everyone that wanted to be added to the group mailing list was able
to give us their details. If you have given us an email address I will
send your newsletter and any other mailings by email but if you
would prefer a paper copy please do let me know and I will put one
in the post. I will keep you on the mailing list unless you let me
know that you wish to be taken off it. You are all very welcome to
attend the quarterly meetings and to bring someone along with you if
you wish.

Thanks as always to Charles for ensuring we are all accounted for

on the sign in list (just in case of the unlikely event that we need to
evacuate the building!) and to clinic nurses Annie and Lynne, for
ensuring everyone got refreshments and for managing
another generous raffle.

Group funds
As of 31st October 2018 our fund balance is £3678.74.
Our expenses in the last 3 months comprise £118.18 for
the production of the July newsletter for over 125
members, plus the cost of the venue and refreshments at
the meetings.

We have received generous donations in memory of Mr Hague, Mrs Morris and Mr Heron
totalling £902.72 plus an additional cash donation of £27.12. Many thanks, as always, for your
generosity at the October meeting; the raffle and donations raised £94.00. We currently have a
total of £121.86 in petty cash.

Any donations to the group can be made payable to Pulmonary Fibrosis Support Group Fund
052, c/o Sandra Olive, Nurse Consultant, Dept of Respiratory Medicine, NNUH.

Your Committee
Professor Andrew Wilson, Honorary President John Stroud, Treasurer
Sandra Olive, Chair/Editor

Dates for your calendar – 2019 meetings

Details of remaining speakers/talks to be confirmed.

Winter Meeting – Saturday 19th January 2019

Dr Ajay Kamath, Consultant Respiratory Physician, Norwich ILD Service
Spring Meeting – Saturday 27th April 2019
Summer Meeting – Saturday 20th July 2019
Autumn Meeting – Saturday 19th October 2019

All meetings at the Willow Centre, Cringleford, from 2-4pm.

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 Useful Information Sources
Websites:
There is a lot of information out there on the internet – some reliable and helpful, some less so.
The following are reliable websites and you may find some useful information. Do ask if you read
anything that you feel needs clarifying.
www.actionpulmonaryfibrosis.org
www.blf.org.uk (British Lung Foundation)
www.pulmonaryfibrosistrust.org
www.breathingmatters.co.uk
www.europeanlung.org/en (European Lung Foundation)
www.pfdoc.org
www.sarcoidosisuk.org (UK Sarcoidosis Charity)

Action for Pulmonary Fibrosis: Advice Line: 01223 785725

Aims to give a voice, at national level, to those affected by pulmonary fibrosis, for comment on
policy, research and education. Raising awareness and supporting individuals through PF
specific support groups, information and advice.

Pulmonary Fibrosis Trust: Advice Line: 01543 442191

Aims to provide personal practical, emotional and financial support to those affected by
pulmonary fibrosis. Can help with stairlifts, mobility scooters, oxygen away from home and more.

British Lung Foundation: Helpline: 03000 030 555

Information and support for people living with or affected by any lung disease.
Breathe Easy Support Groups
Information leaflets/booklets – on lung conditions, treatments, going on holiday and much more.

Breathe Easy Norwich:

Monthly meeting:
First Tuesday of the month, from 2-4pm, in the function room at St Faiths Community Centre,
Horsham St Faiths, NR10 3LF.
Free to attend, no need to book, all very welcome.
Bi-monthly newsletter:
Please let us know if you would like to go on the Breathe Easy mailing list.
Singing for Breathing:
Informal singing group with Breathe Easy Norwich, second and last Friday of each month at the
Willow Centre, Willowcroft Way, Cringleford, NR4 7JJ, 1.00pm for 1.30pm start.

Respiratory Nursing Team, NNUH

Sandra Olive, Nurse Consultant, Respiratory Medicine Tel: 01603 289654

We have a team of Respiratory Nurses who you may meet at Pulmonary Rehabilitation,
in hospital or in the home oxygen service. You can contact us for non-urgent advice and
any of the team will do their best to find answers to your queries. We are based in the
Respiratory Outpatients Department, Level 3 East, NNUH, NR4 7UY.
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