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Scleroderma Individual Personalised Care Plan
My Individual Personal Care Plan
Scleroderma
RheumatologyDepartment
Name:
Date of Birth:
Hospital No.:
NHS No.:
Proud to make a differenceLiving with Scleroderma is going to be part of your life, If you become involved in the day-to-day management of your health, you stand a better chance of maintaining the activities that fill your life. If you take on this job the same way you would take on a new career position, knowing it will require daily learning and practicing and that there will be setbacks as well as successes, you are on your way to managing your scleroderma.
Knowing what you will physically be able to do tomorrow, next year, and beyond, starts with learning what Scleroderma is and what is happening inside your body. The next step is learning what you can do and what your limits are. The third step is forming and following a self-management plan for your life.
Individual Personal Care Plan There are no rules around care plans - use them in whatever way is most useful to you. As a general guide:-1. The personal profile is the first part to complete, gives you the advantage of only having to complete your general information once, regardless of how many care plans or long term conditions you have.2. Identify and complete the plans relevant to you; work with your health care professional to complete the relevant sections, and understand the information contained within the plan. 3. Continually update your plan, and take it with you to any health appointments that you may have.
RememberCare planning isn’t just about filling in the form; it’s much more than that and should help you to be actively involved in managing your own condition and influencing the care that you may receive.
Scleroderma Individual Personalised Care Plan 2
Health Care Team: Contact Number:
GP
Consultant Rheumatologist
Rheumatology Clinical Nurse Specialist
Physiotherapist
Occupational Therapist
Community Matron
Rheumatology Appointments
District Nurse
Other:
Other:
Scleroderma Individual Personalised Care Plan 3
Appointments:
Scleroderma Individual Personalised Care Plan 4
Type of Scleroderma:
Other Health Conditions:
Living with Scleroderma:
Scleroderma Individual Personalised Care Plan 5
Living well day to day with Scleroderma can be achieved by:• Learning about your body and what is happening to it
with Scleroderma.
• Learning about your health professionals, the recommended medications, and what they can do for you.
• Find out what can improve your health, such as losing weight or starting a flexibility exercise program.
Learn how to cope with chronic pain, fatigue, and stiffness:
• Experiment and learn what can help you feel better and what makes things worse. Some people can write without pain while others can’t, and the same goes for walking, aerobics, etc.
• Learn basic skills, such as ways to use your body that protect stiff areas, that will help you continue activities.
Take an active role in managing your scleroderma:
• Gather information about Scleroderma and the steps you can take to stay active.
• Work with your team of health professionals, friends and family to set up a self-management plan.
• Set goals to practice your coping and strengthening skills and incorporate these goals into your life.
• Follow through with your self-management plan on a day-to-day basis.
Preparing for your outpatient appointments:List of medication - remember to take a full list of your:• Prescription Medication• Over the Counter regular medication e.g. paracetamol etc.• Herbal or complimentary medication e.g. devils claw etc.
Know your allergiesHave a list of your known allergiesUrine sampleUrinalysis is often used to monitor protein leakage and identify and assess urinary tract infections (UTIs). Most people with kidney problems will have an abnormal urinalysis. Protein, urine casts (especially red blood cell casts), red blood cells, or white blood cells in the urine can indicate serious kidney involvement; leukocyte esterase may indicate a bladder infection-collect the urine sample with 1-2 hours prior to your appointment.
QuestionsTime with your Consultant, Doctor or Health Care Professional is often limited to 10 to 20 minutes. Ensure that you have a list of important questions you want to know the answer to.Blood TestEnsure that any blood tests are taken 5 -7 days before your clinic appointment, If you live out of the area- ask your GP Practice for a copy of the blood tests results and bring them with you to the appointment.Other tests and Investigation - ensure that all tests and investigations requested from previous appointments are completed, let your Rheumatology department know well in advance if these have not be undertaken.New health problemsPrepare a list of any new health problems you are being seen for- remember your clinical notes may not have all your up to date medical records, clinical letters etc.
Scleroderma Individual Personalised Care Plan 6
Scleroderma Individual Personalised Care Plan 7
Date: Seen by: (circle) GP / Consultant/SpR/ Specialist Nurse/Physio/OT/Podiatrist
Patients comments, goals, questions and report impact on life:
Visual Analogue Scales (VAS): A good way of monitoring your pain and fatigue levels. To do this, simply decide on the number that best describes your level over the previous week and make a note of it on the chart on pages 19-20. For example, if your pain levels were unbearable, level 10 would best describe that.
Consultation RecordsTreatment:
Fatigue VAS:
No Severefatigue fatigue
Pain VAS:
No Severe pain pain
Referral:
Outcomes & Advice:
Investigations: Digital/Non Digital Ulcers Yes/No
If Yes, please indicate where:Follow up:
8 9 1076543210
8 9 1076543210
Scleroderma Individual Personalised Care Plan 8
Date: Seen by: (circle) GP / Consultant/SpR/ Specialist Nurse/Physio/OT/Podiatrist
Patients comments, goals, questions and report impact on life:
Visual Analogue Scales (VAS): A good way of monitoring your pain and fatigue levels. To do this, simply decide on the number that best describes your level over the previous week and make a note of it on the chart on pages 19-20. For example, if your pain levels were unbearable, level 10 would best describe that.
Consultation RecordsTreatment:
Fatigue VAS:
No Severefatigue fatigue
Pain VAS:
No Severe pain pain
Referral:
Outcomes & Advice:
Investigations: Digital/Non Digital Ulcers present:Yes/No
If Yes, please indicate where:Follow up:
8 9 1076543210
8 9 1076543210
Scleroderma Individual Personalised Care Plan 9
Date: Seen by: (circle) GP / Consultant/SpR/ Specialist Nurse/Physio/OT/Podiatrist
Patients comments, goals, questions and report impact on life:
Visual Analogue Scales (VAS): A good way of monitoring your pain and fatigue levels. To do this, simply decide on the number that best describes your level over the previous week and make a note of it on the chart on pages 19-20. For example, if your pain levels were unbearable, level 10 would best describe that.
Consultation RecordsTreatment:
Fatigue VAS:
No Severefatigue fatigue
Pain VAS:
No Severe pain pain
Referral:
Outcomes & Advice:
Investigations: Digital/Non Digital Ulcers Yes/No
If Yes, please indicate where:Follow up:
8 9 1076543210
8 9 1076543210
Date: Seen by: (circle) GP / Consultant/SpR/ Specialist Nurse/Physio/OT/Podiatrist
Patients comments, goals, questions and report impact on life:
Visual Analogue Scales (VAS): A good way of monitoring your pain and fatigue levels. To do this, simply decide on the number that best describes your level over the previous week and make a note of it on the chart on pages 19-20. For example, if your pain levels were unbearable, level 10 would best describe that.
Consultation RecordsTreatment:
Fatigue VAS:
No Severefatigue fatigue
Pain VAS:
No Severe pain pain
Referral:
Outcomes & Advice:
Investigations: Digital/Non Digital Ulcers Yes/No
If Yes, please indicate where:Follow up:
8 9 1076543210
8 9 1076543210
Scleroderma Individual Personalised Care Plan 10
Scleroderma Individual Personalised Care Plan 11
Med
icat
ion
Rec
ord
Rh
eum
ato
log
y O
utp
atie
nts
Dep
artm
ent
Dru
gD
ate
Do
se
Freq
uen
cy R
easo
nPr
escr
ibed
b
yIm
po
rtan
t N
oti
ce
Co
mm
ent
Pred
nis
olo
ne
(Ste
roid
s)D
aily
Do
no
t m
iss
a d
ose
-
any
pro
ble
ms
ta
lk t
o y
ou
r R
heu
mat
olo
gy
Team
Sl
ow
Red
uct
ion
as
pre
scri
bed
b
y yo
ur
Rh
eum
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ist
Dis
ease
M
od
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ng
A
nti
R
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oid
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rug
----
----
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Do
No
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Rh
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am -
Yea
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Req
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R
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oid
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rug
----
----
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ur
Rh
eum
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log
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am -
Yea
rly
flu
Vac
-ci
nat
ion
Req
uir
ed
Scleroderma Individual Personalised Care Plan 12
Med
icat
ion
Rec
ord
Dat
e o
f la
st II
op
rost
infu
sio
n
____
____
____
____
____
____
____
_
Plea
se e
nsu
re t
hat
yo
u h
ave
you
r b
loo
ds
mo
nit
ore
d e
very
____
____
____
as
dir
ecte
d b
y th
e R
heu
mat
olo
gy
Team
Dru
gD
ate
star
ted
Do
seFr
equ
ency
Rea
son
Pres
crib
ed
by
Imp
ort
ant
No
tice
Co
mm
ents
Scleroderma Individual Personalised Care Plan 13
Blo
od
Tes
t R
esu
lts
Plea
se e
nsu
re t
hat
yo
u h
ave
you
r b
loo
ds
mo
nit
ore
d e
very
...
......
......
......
......
... a
s d
irec
ted
by
the
Rh
eum
ato
log
y Te
am
Dat
eH
BW
BC
Plat
elet
sN
eutr
op
hils
ESR
CR
PA
LTC
reat
inin
eU
rea
Uri
nal
ysis
Blo
od
Pr
essu
reW
eig
ht
Scleroderma Individual Personalised Care Plan 14
Blo
od
Tes
t R
esu
lts
Plea
se e
nsu
re t
hat
yo
u h
ave
you
r b
loo
ds
mo
nit
ore
d e
very
...
......
......
......
......
... a
s d
irec
ted
by
the
Rh
eum
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y Te
am
Dat
eH
BW
BC
Plat
elet
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op
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ESR
CR
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LTC
reat
inin
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rea
Uri
nal
ysis
Blo
od
Pr
essu
reW
eig
ht
Record of Additional Tests and Investigations – Echo and Lung Function Test should be performed annually
Date Investigation Result Outcome
Echo
Lung Function Test
Scleroderma Individual Personalised Care Plan 15
Type of Scleroderma:
___________________________________
Serious complications of scleroderma are relatively rare, but regular check ups are recommended, so any problems can be identified and treated at an early stage.Serious complications may include:-
Digital Ulcers CommentsThe best way to treat digital ulcers is to prevent them from occurring in the first place. This is not easy but there are ways in which you may be able to minimise the risk- see Scleroderma Society and Raynaud’s and Scleroderma Association patient information leaflets
Non-digital ulcers can also occur over pressure points such as joints e.g. elbows
Report new vulnerable, ulcerations or discoloured areas to your Rheumatology TeamRecognise symptoms of infection- increased pain, swelling, redness, warmth, pus
See Digital Ulcers in Connective Tissue disease leaflet
Scleroderma Individual Personalised Care Plan 16
Type of Scleroderma:
___________________________________
Serious complications of scleroderma are relatively rare, but regular check ups are recommended, so any problems can be identified and treated at an early stage.Serious complications may include:-
Lung problems CommentsReport any signs of shortness of breath or dry ongoing cough (Lung Fibrosis) or symptoms of ankle swelling, fainting, or chest pain (Pulmonary hypertension)
Contact your Rheumatology Department if any of these symptoms occur
Heart problems CommentsPatients with systemic sclerosis should undergo very detailed investigationwhere any symptoms of heart disease exist (breathlessness, chest discomfort, altered consciousness, palpitations, ankle swelling) because heart disease is common in systemic sclerosis and may be difficult to diagnose. Yearly monitoring for rare complications is important and an annual Echocardiogram and Lung Function Test is recommended
Contact your Rheumatology Department if any of these symptoms occur
Scleroderma Individual Personalised Care Plan 17
Type of Scleroderma:_____________________________________________________
Serious complications of scleroderma are relatively rare, but regular check ups are recommended, so any problems can be identified and treated at an early stage.Serious complications may include:-
Scleroderma renal crisis Comments
A serious complication with features of accelerated hypertension. Can lead to renal failure if not treated promptly.Occurs in up to 20% of patients with diffuse scleroderma, usually in the first four years of the disease.Occurs in about 5% of patients with limited scleroderma.Presentation: Usually presents as a sudden accelerated hypertension with no urine being passed, Headache, Fatigue, Oedema- swelling of lower legs. Rapidly rising serum creatinine levels, proteinuria and microscopic haematuria (blood in the urine).
Contact your Rheumatology Department if any of these symptoms occur
10% of scleroderma renal crisis occur with apparently normal blood pressure, but the blood pressure is higher than baseline values - hence the importance of regular blood pressure monitoring.
Patients with previous Scleroderma Renal Crisis will have access to the Rheumatology Direct Access Policy - speak to your Rheumatology Clinical Nurse Specialist
Scleroderma Individual Personalised Care Plan 18
Other Problems Associated with SclerodermaGastrointestinal problems CommentsPeople with Scleroderma may develop abnormalities of the digestive system and gastrointestinal tract. Such as Oesophageal dysfunction, Bowel involvement including diarrhoea.
See Understanding and Managing Scleroderma BookletDiscuss any new symptoms with the Rheumatology Team.
Oral and Dental Problems/Facial Changes
Comments
The general tightening of skin over the face makes lip and mouth movements as well as oral hygiene difficult. Mircostomia may make it difficult to open the mouth wide enough for dental procedures therefore good, regular dental care is essential
See Oral problems in Scleroderma LeafletSee exercise section for facial exercises
Overlap Syndromes of other Connective Tissue Disease
Comments
Such as Sjogren’s/Scleroderma Overlap. The most common feature of Sjogren’s syndrome are dryness of the eyes and mouth (sicca symptoms).
See Understanding and Managing Scleroderma BookletDiscuss any new symptoms with the Rheumatology Team.
Scleroderma Individual Personalised Care Plan 19
Other Problems Associated with Scleroderma
Can help reduce joint swelling and stiffness. NSAID’s should be used with caution. Especially if you have problems with your blood pressure, kidneys or heart.One complication of NSAID’s is bleeding/ulceration in the stomach and upper intestine. Signs of bleeding/ulceration include stomach pain, blood in stool or dark stools and coffee coloured vomit.
Discuss any possible symptoms with your healthcare professional.
Scleroderma Individual Personalised Care Plan 20
Self Management Advice - Skin Involvement Tight Skin around the fingers, face and other areas of the body causing contractures
Comments
In addition to drug treatments which you may be receiving physiotherapy and exercise are important to maintain skin movements around joints.
See The Skin in Systematic Sclerosis leaflet
Dryness and Irritation of the Skin CommentsRegular daily use of moisturisers can help solve this. Some moisturisers have specific ingredients in to combat the itch.
See The Skin in Systematic Sclerosis leaflet. Discuss with your GP or Rheumatology Team for further advice.
Telangiectasia Comments
These are burst blood vessels visible as red spots normally on the face and hands. Some treatments are available and may require special funding.
Cosmetic camouflage is an effective alternative to cover telangiectasia – Contact Changing Faces for general enquires on 0845 4500 275 or 0207 391 9270.www.changingfaces.org.uk/Skin-Camouflage
See The Skin in Systematic Sclerosis leaflet
Discuss with your Specialist Nurse how to access this service.
Scleroderma Individual Personalised Care Plan 21
Self Management Advice - Skin Involvement
Calcinosis Comments
Characterized by deposits of calcium in the skin, which may be painful. The calcium deposits may occur just below the skin surface in the form of hard lump or nodules. They break through the skin, becoming visible as chalky white material and may become infected.
See advice from the Rheumatology Department
Scleroderma Individual Personalised Care Plan 22
Living Well with SclerodermaCardiovascular risk Comments
Research has determined that inflammation associated with Scleroderma increases the risk of Cardiovascular Disease and other cardiovascular events.
It is therefore recommended that all patients look to lower Cardiovascular risk by treating inflammation and by paying attention to risk factors linked to heart disease:-• Smoking • Healthy Eating (Cholesterol) • Blood Pressure • Weight• Exercise
Further advice from GP practices
Smoking Comments
Cigarette smoking may flare your Raynaud’s symptoms. There is also some evidence that cigarette smoking increases the likelihood of complications.
Further advice available from GP practices regarding stopping smoking
Scleroderma Individual Personalised Care Plan 23
Self Management Advice - Skin Involvement
Healthy Eating Comments
It is well-recognised that a healthy diet is important for everyone. Current research supports healthy eating . Maintaining your body weight is important. Scleroderma patients are more likely to lose weight more rapidly and will have difficulty in putting the weight back on and maintaining their weight.
See Nutritional tips for Scleroderma patients leaflet
Bone Health:Osteoporosis risk
Comments
Some treatments such as steroid’s which can be used to help treat Scleroderma can lower bone mineral density leading to fragile bones. This lower bone mineral density can develop into Osteoporosis meaning you are more susceptible to breaking a bone particularly of the spine, wrist and hip.
Eat a healthy diet including foods high in calciumReduce your alcohol intake Stop SmokingEnsure you remain active and include low impact weight bearing exercises in your weekly regime.
Scleroderma Individual Personalised Care Plan 24
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSy
mp
tom
Act
ion
Co
mm
ent/
revi
ew
Join
t an
d
mu
scle
p
ain
Pain
an
d t
end
ern
ess
in
han
ds
and
fee
t b
ut
can
af
fect
mu
ltip
le jo
ints
an
d m
usc
les.
Join
t p
ain
s ca
n q
uic
kly
mo
ve f
rom
on
e jo
int
to
ano
ther
.
Inab
ility
to
co
mp
lete
ac
tivi
ties
of
dai
ly
livin
g d
ue
to p
ain
an
d
wea
knes
s
Dat
eSi
gn
atu
re
Scleroderma Individual Personalised Care Plan 25
Scleroderma Individual Personalised Care Plan 26
Activity/Exercise and Scleroderma
Why do I need to be active and exercise?
• To keep muscles strong• To keep maximum bone strength• To maintain good balance and reduce falls• To keep independent with normal activities of life i.e. getting dressed, getting in and out of a chair• To reduce risk of conditions such as diabetes, increased cholesterol, • To aid sleep and reduce fatigue• To maintain a healthy weight• To improve general well being and mood • To keep joints moving• To help ease pain
How often should I exercise?
Range-of-motion/flexibility exercises can be done daily and should be done at least every other dayStrengthening exercises should be performed every other day unless you have painful or swollen jointsCardiovascular exercise should be performed for a total of 150 minutes a week, most people doing 30 minutes 5 times a week. The exercise can be broken down into 10 minute bouts if you find it easier
Scleroderma Individual Personalised Care Plan 27
Exer
cise
an
d S
cler
od
erm
a
Han
d e
xerc
ises
Faci
al e
xerc
ises
Car
dio
vasc
ula
r &
gen
eral
fitn
ess
Stre
tch
ing
an
d k
eep
ing
th
e sk
in o
f yo
ur
han
ds
mo
bile
is
ess
enti
al t
o h
elp
yo
u
mai
nta
in r
ang
e o
f m
ove
men
t o
f th
e jo
ints
an
d f
un
ctio
nal
u
se o
f th
e h
and
s
If y
ou
hav
e b
een
dia
gn
ose
d
wit
h S
cler
od
erm
a in
th
e p
ast
12 m
on
ths
do
no
t o
ver
stre
tch
or
be
too
vig
oro
us
wit
h y
ou
r st
retc
hes
Kee
p s
kin
mo
istu
rise
d
Use
cir
cula
r m
assa
ge
mo
tio
ns
on
th
e sk
in o
f th
e h
and
s to
h
elp
kee
p s
kin
su
pp
le
Try
to c
om
ple
te t
he
exer
cise
s 3
tim
es a
day
Try
to d
o y
ou
r fa
cial
ex
erci
ses
on
a d
aily
bas
is
Mas
sag
e yo
ur
face
wit
h
gen
tle
circ
ula
r m
oti
on
s p
rio
r to
do
ing
yo
ur
exer
cise
s
Do
a f
ew r
epet
itio
ns
of
each
ex
erci
se f
ast
asa
“war
m u
p”
Rep
eat
each
exe
rcis
e h
old
ing
it f
or
a fe
w s
eco
nd
s to
str
etch
a b
it lo
ng
er
Do
exe
rcis
es in
fro
nt
of
a m
irro
r
It is
imp
ort
ant
for
all i
nd
ivid
ual
s to
mai
nta
in a
hea
lth
y ca
rdio
vasc
ula
r sy
stem
(i.e
.: h
ealt
hy
hea
rt a
nd
lun
gs)
For
tho
se w
ith
scl
ero
der
ma
the
nee
d f
or
con
sid
erin
g y
ou
r d
iag
no
sis
and
th
e co
mb
inat
ion
o
f m
edic
atio
ns
that
yo
u m
ay
be
on
is e
ven
gre
ater
to
en
sure
th
at y
ou
min
imis
e th
e ri
sk o
f ca
rdio
vasc
ula
r d
isea
se s
uch
as
hea
rt a
ttac
ks a
nd
str
oke
s
Rem
emb
er t
hat
yo
ur
no
rmal
ac
tivi
ties
du
rin
g t
he
day
are
co
nsi
der
ed a
s h
ealt
hy
acti
vity
, so
m
ake
sure
yo
u t
ry a
nd
do
so
me
of
th
e fo
llow
ing
:
Scleroderma Individual Personalised Care Plan 28
Exer
cise
an
d S
cler
od
erm
a
Han
d e
xerc
ises
Faci
al e
xerc
ises
Car
dio
vasc
ula
r &
gen
eral
fitn
ess
Try
to d
o e
xerc
ises
10
tim
es
each
Co
nsi
der
use
of
wax
bat
hs
pri
or
to y
ou
r ex
erci
se t
o h
elp
m
ake
skin
mo
re m
alle
able
(N
B: s
eek
med
ical
ad
vice
if
yo
u h
ave
a d
iag
no
sis
of
Ray
nau
d’s
• O
pen
yo
ur
mo
uth
as
wid
e as
po
ssib
le w
ith
tee
th
sho
win
g
• O
pen
yo
ur
mo
uth
as
wid
e as
po
ssib
le w
ith
yo
ur
lips
cove
rin
g y
ou
r te
eth
• W
ide
smile
wit
h y
ou
r te
eth
sh
ow
ing
• W
ide
smile
wit
h y
ou
r lip
s cl
ose
d
• Pu
sh y
ou
r lo
wer
jaw
fo
rwar
d t
o c
reat
e an
u
nd
er b
ite
• R
aise
yo
ur
eye
bro
ws
hig
h
• Fr
ow
n
• T
ake
the
stai
rs r
ath
er t
han
th
e lif
t•
Par
k fu
rth
er f
rom
th
e sh
op
d
oo
r to
mak
e yo
u w
alk
furt
her
• D
o s
om
e co
oki
ng
to
mak
e yo
u m
ove
aro
un
d
Scleroderma Individual Personalised Care Plan29
Exer
cise
an
d S
cler
od
erm
aH
and
exe
rcis
esFa
cial
exe
rcis
esC
ard
iova
scu
lar
& g
ener
al fi
tnes
s
• B
end
yo
ur
wri
sts
forw
ard
• B
end
yo
ur
wri
st b
ackw
ard
s
• M
ake
a ti
gh
t fi
st t
hen
sp
read
yo
ur
fin
ger
s st
raig
ht
and
wid
e
• M
ake
a h
igh
fist
(b
end
yo
ur
fin
ger
tip
s o
nly
to
to
uch
th
e to
p o
f yo
ur
pal
m)
• Pl
ace
pal
ms
of
han
ds
tog
eth
er a
nd
usi
ng
th
e kn
uck
le jo
ints
try
to
mak
ea
dia
mo
nd
sh
ape
(kee
p
fin
ger
tip
s an
d w
rist
s to
get
her
)
• R
esti
ng
yo
ur
han
d o
n y
ou
r la
p t
urn
yo
ur
pal
m f
acin
g u
p
and
th
en d
ow
n
• C
lose
yo
ur
eyes
tig
ht
• W
rin
kle
to b
rid
ge
of
you
r n
ose
• W
ink
each
eye
• Pu
ff y
ou
r ch
eeks
ou
t
• Fl
are
you
r n
ost
rils
• W
alki
ng
• Sw
imm
ing
• C
yclin
g
• C
hai
r b
ased
exe
rcis
e
• N
ord
ic w
alki
ng
• Pi
late
s
• Yo
ga
Ther
e ar
e m
any
mo
re f
orm
s o
f ex
erci
se t
hat
may
be
suit
able
fo
r yo
u –
tak
e th
e o
pp
ort
un
ity
to d
iscu
ss t
hes
e w
ith
yo
ur
ph
ysio
ther
apis
t
Scleroderma Individual Personalised Care Plan 30
Exer
cise
an
d S
cler
od
erm
aH
and
exe
rcis
esFa
cial
exe
rcis
esC
ard
iova
scu
lar
& g
ener
al fi
tnes
s
• Ta
p t
he
tip
of
each
fin
ger
w
ith
yo
ur
thu
mb
• Ta
p t
he
bas
e o
f yo
ur
littl
e fi
ng
er w
ith
yo
ur
thu
mb
Scleroderma Individual Personalised Care Plan 31
Exercise and Pulmonary HypertensionExercise and pulmonary hypertensionHaving Pulmonary hypertension can make it hard for some to exercise to a degree that will work their cardiovascular system vigorously. For those with shortness of breath on mild or moderate exertion it is recommended that you work with your physiotherapist or nursing team to ensure suitable activities / exercises are being undertaken.
For those who are short of breath at rest or on mild exertion, exercise should only be undertaken with supervision.
If you feel any symptoms of dizziness, increased levels of shortness of breath above what is normal for you, or any other symptoms of concern, stop your exercise and seek medical advice
Remember, your tolerance to exercise and the suitability of different activities and exercise may vary according to your condition. Please ensure you seek regular review with your health care team to ensure your level of activity /exercise is still right for you.
Scleroderma Individual Personalised Care Plan 32
Managing PainNot all people present with the same location, frequency, intensity or duration of pain. Some have mild ongoing pain,some have gradually increasing pain, others will have episodes of intense pain and then be relatively pain free for a period of time – everybody is different. It is not possible to predict who will experience what pain levels.
Self management actions to reduce or control your pain levels include:
• Taking your medication as prescribed (if applicable)• Keeping a good posture• Exercising regularly• Pacing your activities • Minimising stress levels
Have a dedicated time to practice relaxation techniques each day.
Cool and Heat packs can prove effective. Caution when using cool and heat packs if experiencing Raynaud’ssymptoms avoiding rapid temperature changes.
It is essential to remember that not all pain is “harmful.” A level of discomfort as you exercise is expected butthis will not be causing any physical harm if you are performing the right exercise in the right way and at thecorrect level.
Scleroderma Individual Personalised Care Plan 33
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSy
mp
tom
Act
ion
Co
mm
ent/
revi
ew
Fati
gu
eTi
red
nes
s u
nre
lieve
d b
y re
st
Lack
of
ener
gy
or
mo
tiva
tio
n
Poo
r co
nce
ntr
atio
n o
r m
emo
ry
Ap
ath
y o
r ‘n
ot
cari
ng
w
hat
hap
pen
s’
All
oth
er c
ause
s o
f fa
tig
ue
excl
ud
ed
Dat
eSi
gn
atu
re
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSy
mp
tom
Act
ion
Co
mm
ent/
revi
ew
Ray
nau
dA
ffec
ts b
loo
d v
esse
ls
in t
he
fin
ger
s, t
oes
, n
ose
or
ears
A c
han
ge
in
tem
per
atu
re c
ause
s sk
in t
o g
o, b
lue,
wh
ite
then
red
avo
id r
apid
te
mp
erat
ure
ch
ang
es,
war
m u
p s
low
ly.
Cau
ses
pai
n, t
ing
ling
an
d n
um
bn
ess
of
affe
cted
are
as
Can
red
uce
han
d
fun
ctio
n a
nd
can
cau
se
fin
ger
ulc
ers
Dat
eSi
gn
atu
re
Scleroderma Individual Personalised Care Plan 34
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSy
mp
tom
Act
ion
Co
mm
ent/
revi
ew
Ray
nau
dSe
e yo
ur
po
dia
tris
t fo
r in
sole
s th
at h
elp
kee
p
the
war
mth
in y
ou
r sh
oes
wh
en o
ut
and
ab
ou
t in
co
ld w
eath
er
Som
e cr
eam
s ar
e av
aila
ble
wh
ich
ca
n h
elp
man
age
pre
-ulc
erat
ive
site
s d
iscu
ss w
ith
th
e R
heu
mat
olo
gy
Team
Dat
eSi
gn
atu
re
Scleroderma Individual Personalised Care Plan 35
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSe
lf m
anag
emen
t ad
vice
Act
ion
Co
mm
ent/
revi
ew
An
xiet
y,
low
mo
od
o
r d
epre
ssio
n
Man
y fa
cto
rs
can
co
ntr
ibu
te
to t
he
sym
pto
ms
of
anxi
ety
and
d
epre
ssio
n
incl
ud
ing
:H
avin
g a
d
iag
no
sis
of
a lo
ng
ter
m
con
dit
ion
Pain
leve
lsFa
tig
ue
leve
ls /
red
uce
d s
leep
Loss
of
fun
ctio
nal
in
dep
end
ence
Red
uce
d a
bili
ty
to w
ork
/rem
ain
p
rod
uct
ive
at
wo
rk
Co
nsi
der
co
un
selli
ng
to
hel
p y
ou
to
co
me
to t
erm
s w
ith
yo
ur
dia
gn
osi
s / c
urr
ent
stat
e.C
on
tact
yo
ur
GP
for
advi
se o
n e
ffec
tive
m
edic
atio
ns
Exer
cise
reg
ula
rly
– th
is c
an h
elp
th
e b
od
y p
rod
uce
its
ow
n
pai
nki
llin
g c
hem
ical
s an
d g
ive
you
a s
ense
of
wel
l bei
ng
Talk
to
fam
ily a
nd
fr
ien
ds
– le
t th
em k
no
w
ho
w y
ou
are
fee
ling
an
d t
hat
it c
an b
e p
art
of
you
r co
nd
itio
nU
se s
up
po
rt g
rou
ps
Dat
eSi
gn
atu
re
Scleroderma Individual Personalised Care Plan 36
Scleroderma Individual Personalised Care Plan 37
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
ble
mSe
lf m
anag
emen
t a
dvi
ceA
ctio
nEv
alu
atio
n
Med
icat
ion
Ster
oid
s –
for
som
e p
atie
nts
St
ero
ids
are
the
firs
t lin
e o
f m
edic
atio
n.
Ster
oid
s sh
ou
ld b
e ta
ken
on
a r
egu
lar
bas
is –
at
no
po
int
mu
st
ster
oid
s b
e st
op
ped
wit
ho
ut
pri
or
dis
cuss
ion
wit
h t
he
Co
nsu
ltan
t R
heu
mat
olo
gis
t.
IV o
r IM
ste
roid
s m
ay b
e n
eed
ed.
Dis
ease
Mo
dif
yin
g A
nti
R
heu
mat
oid
Dru
gs
(D
MA
RD
S) a
re t
he
oth
er
med
icat
ion
s im
po
rtan
t in
m
anag
ing
Scl
ero
der
ma
The
Dep
artm
ent
of
Rh
eum
ato
log
y h
old
s al
l of
the
AR
UK
Lea
flet
s o
r vi
sit
ww
w.
arth
riti
sres
earc
h.u
k.o
rg
AR
UK
leafl
ets-
Ster
oid
s M
eth
otr
exat
eM
yco
ph
eno
late
C
yclo
ph
osp
ham
ide
Aza
thio
pri
ne
Hyd
roxy
chlo
roq
uin
e
Mo
nit
ori
ng
Dat
eSi
gn
atu
re
MedicationPeople with Scleroderma are likely to take several prescriptions and over the counter medications, and the more drugs you take for the conditions you develop, the greater the chance that you’ll experience side effects, medications interacting or the potential you mistakenly take the wrong drug or dose. You can help avoid these problems by getting organised and making sure your medical team and pharmacist know about all of the prescription drugs you’re taking.
Top Tips• Make a list. Keep an updated list of all your over-the-counter and prescription medications with you at all times so you can share it with each member of your health care team when you go to doctor visits and get prescriptions filled. Include the name of each medication you are taking, along with the dosage information and the reason you are taking it.Give a copy of your medication to your next of kinLook to see if the “Message in a bottle” scheme can help you.
• Maintain a prescription medication file. After you read the written material that accompanies your prescription medication, file it in a place where you can find it easily should you ever have questions about dosage or side effects.• Use one pharmacy. If possible, have all of your medications filled at the same pharmacy, so that your pharmacist can track them all and alert you to possible drug interactions.• Medication Review. Ask your Pharmacy for a yearly medication review.Do not over stock- only order repeat prescription. Message in a bottle: Available from Lions Clubs Headquarters on 0845 833 9502 or by e-mail [email protected]
Scleroderma Individual Personalised Care Plan 38
Man
agin
g m
y Sc
lero
der
ma
sym
pto
ms
Sym
pto
ms
Self
-Man
agem
ent
Pla
nC
om
men
t/re
view
Scleroderma Individual Personalised Care Plan 39
My
Pers
on
al G
oal
s
Dat
eG
oal
I w
ou
ld li
ke t
o a
chie
veW
hat
act
ion
s am
I g
oin
g
to t
ake
to a
chie
ve it
By
wh
enD
ate
ach
ieve
d
Scleroderma Individual Personalised Care Plan 40
Patient Support Groups
When beginning to live with a disease such as Scleroderma you and your family will have many questions. Some of which will be very specific to the disease itself whilst others will be related to just getting on with living with Scleroderma.
You will find a wealth of information from Scleroderma and Raynaud’s charities, who also can direct you to the best possible answers to your questions about your health, future, happiness, independence and relationships. Also, be sure to ask other Scleroderma patients for their solutions to some of the problems you are beginning to face, both practical and emotional.
Supporting and participating in local support groups, and their online chat forums, offers no better place to gain understanding about living with Scleroderma than from a group of people who live with the condition.
The interaction with a larger group offers you a broader scope of understanding, especially since not all people with Scleroderma have identical symptoms, undergo the same treatments, or cope the same way. We can learn from each other and from shared experiences.
Both Charities also produce a wealth of information booklets, information sheets and resources.
Scleroderma Individual Personalised Care Plan 41
Scleroderma Individual Personalised Care Plan 42
Patient Support Groups
The Scleroderma SocietyBride House18-20 Bride StreetLondonEC4Y 8EE
Phone: 020 7000 1925
Email: [email protected]
Webpage: www.sclerodermasociety.co.uk
Raynaud’s and Scleroderma Association112 Crewe Road,AlsagerCheshireST7 2JA
Phone: 01270 872776 or 0800 9172494
Email: [email protected]
Webpage: www.raynauds.org.uk/
Produced by: Rheumatology DepartmentDate: June 2015 Review: June 2017Ref: P WMedical Illustration ref: 15/1152© Portsmouth Hospitals NHS Trust 2015
Notes:
Scleroderma Individual Personalised Care Plan 43
Scleroderma Individual Personalised Care Plan 44
Notes: