My Individual Personal Care Plan Scleroderma · Living well day to day with Scleroderma can be...

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:


Appointments:


Type of Scleroderma:

Other Health Conditions:

Living with Scleroderma:


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.



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






Fatigue VAS:


Pain VAS:

No Severe pain pain

Referral:

Outcomes & Advice:

Investigations: Digital/Non Digital Ulcers present:Yes/No


8 9 1076543210

8 9 1076543210






Fatigue VAS:


Pain VAS:

No Severe pain pain

Referral:

Outcomes & Advice:



8 9 1076543210

8 9 1076543210


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

ato

log

ist

Dis

ease

M

od

ifyi

ng

A

nti

R

heu

mat

oid

D

rug

----

----

----

----

--

Do

No

t M

iss

a D

ose

–

any

pro

ble

ms

talk

to

yo

ur

Rh

eum

ato

log

y te

am -

Yea

rly

flu

Vac

-ci

nat

ion

Req

uir

ed

Dis

ease

M

od

ifyi

ng

A

nti

R

heu

mat

oid

D

rug

----

----

----

----

----

Do

No

t M

iss

a D

ose

–

any

pro

ble

ms

talk

to

yo

ur

Rh

eum

ato

log

y te

am -

Yea

rly

flu

Vac

-ci

nat

ion

Req

uir

ed


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


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

Record of Additional Tests and Investigations – Echo and Lung Function Test should be performed annually

Date Investigation Result Outcome

Echo

Lung Function Test



___________________________________

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



___________________________________


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



Type of Scleroderma:_____________________________________________________


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).


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


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.


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.


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.


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


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


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.


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



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


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

:


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


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


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.


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.


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


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


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



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]


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


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


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.



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:


My Individual Personal Care Plan Scleroderma · Living well day to day with Scleroderma can be...

Documents

Transcript of My Individual Personal Care Plan Scleroderma · Living well day to day with Scleroderma can be...