Issue 1 January 2016
2
I hope you
y all have had a very fiine festive se
eason. The New
N
m
Year is now well upoon us and wiith it resolutioons. I have made
several, most of which are unforrtunately alre
eady consign
ned to the wa
astepaper ba
asket of histo
ory. Though to
t be honest as I
before Christmass, it appears I have already dismissedd them beforre 2016 has even
e
started... However, one
am writing this
ad every
inte
ention of keeping is to pilo
ot a newslettter which can
n be shaped by our supp
port group, re
eflects our
that I ha
interestts, as well ass being a means to capture and distrib
bute the outp
puts from our meetings.
I have looked at new
wsletters from
m support grroups
across the
t patch. I w
was primarily
y doing this to
t ‘borrow’
some of their best id
deas. They are
a all rather fine with a
diversity
y that I guess reflects the
e needs and interests of
their me
embers. A co
ontact details
s section see
ems
universa
al and I have
e included an
n embryonic one here.
They also have an u
unfortunate habit
h
of puttin
ng ILD
nurse pictures
p
in. So
o if this newssletter thing is
i to
progres
ss, I will have
e to arm-twistt Dr Hoyles into buying
some fo
orm of Photo
oshop packag
ge to carry out some
heavy duty
d
airbrush
hing. (For me
e of course, not
n
Ophelia
a).
Team Oxford
d ILD for 2016
6
gs we are up to’ section also
a
seemed like a ratherr appropriate thing for a newsletter.
n
I must
m
admit I have absolu
utely
A ‘thing
no idea
a what any off you are up to
t and no do
oubt you wou
uld be somew
what unnerve
ed if I did. So
o as the only person I kno
ow
about is
s me then I guess
g
I shoulld let you kno
ow what I’m up to.
I initially
y asked my e
elder daughte
er what interresting thing about me I
could mention.
m
Her response wa
as an utterly blank look, followed
f
by
questioning if this w
was the sort of
o thing I did all day. I of course
c
ed her of the breadth of skills required
d by a moderrn nurse but
informe
by the time
t
I was ha
alf way through my lecturre she had allready
plugged
d herself bacck into her iPod.
s
for so
omething inte
eresting to te
ell you about has thus
As my search
far prov
ved fruitless, I have decid
ded to shame
elessly manu
ufacture
something. The aforrementioned
d something is
i to 'run' the
e Edinburgh
on in aid of both
b
the BLF and Action for
f Pulmonarry Fibrosis.
maratho
A fine
f
example of
o a group of people
p
doing
This feltt like a rather fine idea as
s I was starin
ng at a webssite full of
something ‘interresting’. Please do not feel
the hap
ppy faces of last year’s fin
nishers. Now
w in the cold light
l
of day I
elled to take up
u an art classs as other form
ms
am not quite so sure
e... but in any case I have
e at least put a
compof
o ‘interesting’ are of course
e available.
horical tick in the ‘interesting’ box. metaph
Here are
e the dates for the sup
pport group meetinggs for the co
oming year and early 2
2017. They continue to be on the second Thursday of alternatte months, tthough the keen eyed of you will notiice that thee June meeting is on the third Thursdaay. (Sorry… someone had got there ahead o
of me in boo
oking the haall). Thursday 11th FFebruary 16
6 Thursday 16th June 16
Thursday 13th October 16
6 Thursday 9th FFebruary 17
7 Thursdaay 14th Apriil 2016 Thursdaay 11th Auggust 16 Thursdaay 8th Dece
ember 16 Thursdaay 13th Aprril 17 Issue 1 January 2016
2
Thanks to all of you wh
ho attended the
t last group meeting. I
very much enjoyed it and was pleassantly surprised by the
quality of ssound we colllectively mad
de during the
e singing for
better brea
athing taster session.
As was me
entioned, Sin
nging for Brea
athing came
e out of a
piece of re
esearch from the Royal Brompton Hosspital. The
aim of whicch is to enha
ance existing
g physiothera
apeutic
support forr respiratory conditions by introducing
g individuals
to a new fo
orm of inform
mal exercise, and teaching a better
understand
ding of breatth control thro
ough the use
e of the voice
e.
I hope you all found it both
b
useful and
a enjoyable
e as well as
hing techniqu
ues. If you
reinforcing the importance of breath
w breathing
g techniques
would like any additional support with
achel Lardne
er via the help
pline and she
e
then please contact Ra
e to provide some
s
comprrehensive advice.
will be able
For more information on
o singing gro
oups across London and
d
the South East please go to:
https://ww
ww.blf.org.uk//Page/Singin
ng-Groups#L
London
Unfo
ortunately I did
dn’t take any pictures
p
so
can
n’t illustrate thiis with what w
we looked
like; however, in order to fill wh
hat would
be an unfortunate gap, this is an
n example
o what such a group looks like in
of
La
ambeth.
In Decem
mber we also
o had what I thought wass a really gra
and question and answerr market placce. The
idea wass to bring questions we h
had about living with pulm
monary fibros
sis and trade
e them for answers
from gro
oup members
s who may have
h
already faced them. I have captu
ured the outp
puts below. I have
also don
ne my best to
o search arou
und to provid
de additional details for some
s
of the answers
a
but
unfortun
nately there iss no guaranttee these ans
swers are co
omprehensiv
ve.
1. Going Abro
oad with Am
mbulatory Ox
xygen.
The British Lung Fou
undation high
hlights the ne
eed to make arrangemen
nts for oxyge
en to be provided at
your desstination befo
ore you trave
el. UK supplie
ers will not be
b able to pro
ovide oxygen
n while an ind
dividual
is overse
eas. Within Europe,
E
oxyg
gen can be arranged
a
thro
ough the European Health Insurance Card
(EHIC) sscheme. Furtther details about
a
this ca
an be found through the BLF
B website
https://w
www.blf.org.u
uk/Page/Goin
ng-on-holidayy-practical-isssues
or throug
gh their helpline on 0300
00 030 555.
our usual UK
K supplier ma
ay have direcct contact with a compan
ny or the BLF
F
Outside of Europe yo
onsulate in th
he country yo
ou are travelling to. Again
n their helplin
ne on
suggest contacting the British co
030 555 can also
a
help.
03000 0
2. Flying with ambulatory
y oxygen.
This app
pears to be airline
a
specific and the co
onstant piece
e of advice is to check witth an airline early
e
on.
The Eurropean Lung Foundation has details of
o the oxygen
n policies of over 100 airlines and can
n be
found he
ere.
http://ww
ww.european
nlung.org/en//lung-disease
e-and-inform
mation/air-travvel/airline-ind
dex/
3. Are all thos
se with Pulm
monary Fibro
osis Aware of Diaphrag
gmatic Breatthing?
Please ccontact Rach
hel Lardner via
v the usual helpline or e-mail
e
addresss to arrange
e a 1:1 discu
ussion
and asse
essment if yo
ou are intere
ested in this.
Issue 1 January 2016
4. What is the difference between the various oxygen concentrators available?
The flow of oxygen required will be the key factor regarding size. For those requiring relatively low
flow rates then smaller concentrators are available; higher flow rates will require a larger device.
Please contact your local oxygen nurses for further details.
5. The battery life of an oxygen concentrator is becoming more limited what can I do?
I am afraid the best I could come up with here is to suggest a discussion with your oxygen nurse.
6. How to find Travel Insurance?
As you will no doubt be unsurprised to hear getting a comprehensive answer is pretty much
impossible; however, the British Insurance Brokers Association (BIBA) can identify brokers who can
provide advice on this.
British Insurance Brokers Association
8th Floor John Stow House
18 Bevis Marks
London
EC3A 7JB
Phone: 0870 950 1790 (open 9am to 5pm Monday to Friday)
Email: enquiries@biba.org.uk
Website: www.biba.org.uk
I understand that brokers make a service charge so it is probably worth looking at a number of them
to make sure you’re aware of any charges in advance of using one and ensure they sufficiently
understand your circumstances.
The British Lung Foundation can also give advice on this via their helpline: 03000 030 555.
The two companies mentioned by group members are: Forces Pension society (for those with a link
to the armed forces) and Stay Sure Insurance. Here comes the big health warning: As I am not an
insurance broker I am completely unqualified to give any advice or recommend particular companies,
so please treat this as a broad selection of information which I hope is of some help.
7. How do you get a blue badge and where can you park with one?
The link below takes you to the gov.uk website where you to find tailored information on the blue
badge scheme based on a postcode you provide. I tried with Reading and Oxford and it took me to
information on both how to get a blue badge, eligibility criteria and where a particular council will allow
you to park.
https://www.gov.uk/where-registered-disabled-drivers-can-park
8. What would happen to my treatment at the Oxford ILD service if I moved?
Please contact the service via the helpline and to seek clarification regarding how your new location
relates to the area covered by this service.
Medicine and Me is a series of events organised by the Royal Society of Medicine and there is an upcoming one on living with pulmonary fibrosis. I have included some information from the Royal Society of Medicine below which hopefully provides a flavour of the event. The aim of these events is to provide an open environment in which the patient’s voice is given top priority. They give patients the opportunity to learn more about the latest treatments and research for their particular condition as well as allow healthcare Issue 1 January 2016
2
professiionals to heear first‐han
nd from pattients and th
heir familiess about their concerns and experiences. The reaal plus is thaat it is free ffor both pattients and ccarers. It takkes place at the Royal SSociety of Medicine, which
h is at 1 Wim
mpole Streeet. Now tho
ose of you w
who have a ssimilar level of 'knowleedge' to you
ur average LLondon cabbie will havve already re
ealised this is actually marvelllously close to Oxford SStreet, if that is in anyw
way your so
ort of thing. It is a haalf‐day even
nt on 26th A
April 2016, which is jusst after our April meetiing but perh
haps if anyone does atten
nd they coulld feedbackk to the grou
up at our Ju
une meetingg. I am veryy much hoping to go myself, though I must admit I have yett to ask either Dr Hoyle
es or Dr Ho aabout all this. I guess thiss will be thee sort of queestion you aask just afte
er you've made them aa cuppa. The linkk below willl take you to
o the relevaant information, with d
details abou
ut speakers,, timings and how to
o book. https:///www.rsm..ac.uk/even
nts/events‐listing/2015
5‐2016/grou
ups/public‐eengagemen
nt‐
program
mme/mmg0
03‐medicinee‐and‐me‐liiving‐with‐p
pulmonary‐ffibrosis.asp
px Firstly, I should verry much thaank you for making it to
o the final ssection. Havving read th
his far, you may well be exxperiencingg a number of emotions; probablyy with an asssociated strrapline of ‘who
o on earth d
does he thin
nk he is expeecting me to
o read this sort of stufff?’ In my deefence I have pu
ut this togetther partly because the
ere were qu
uite a few th
hings I wantted to convvey but also as an exemplaar of what w
we could collectively prroduce, alm
most certainly with morre finesse than I havee. If having rread this yo
ou would likke to have a go at takin
ng this forwaard in a more eloquent fashion then p
please let m
me know; myy hope is th
hat anythingg we producce would h
have contrib
butions from
m multiple group mem
mbers. Also thee support group itself, if it is to co
ontinue to m
meet the needs of its m
members wo
ould benefit from continued shaping by its meembers, perhaps with some of us taking own
nership of particular aspeccts. If you feeel you could contributte in any waay however small, then
n please let me kknow. My thought is to
o have a sho
ort get togeether at the end of our February M
Meeting with an
nyone who is interested
d. And finally… the ILLD team would like to w
wish all of you the finesst of New YYear’s. Oxford Interstitial Lung Diseasse Service
Oxford University Hospitals NHS Foundattion Trust
Specialiist Nurse Diirect Line Opheliaa English / C
Carmine Rugggiero 01865 2
227050 Oxford..ILD@ouh.n
nhs.uk British Lung Found
dation www.b
blf.org.uk Action for Pulmon
nary Fibrosiss http:///www.actionpulmonaryyfibr
osis.orgg/ Age UK
K www.aageuk.org.uk