my individual personal care plan myositis - · pdf fileindividual personal care plan myositis...

My Individual Personal Care Plan

Myositis

Myositis Individual Personalised Care Plan

Name:

Date of Birth:

Hospital No.:

NHS No.:

RheumatologyDepartment

Individual Personal Care Plan

Myositis can be a complex medical condition and every patient is different. This document hopes to be a central resource of information where you can hold details about your condition, treatment and management that you want to keep. It may assist in your care and provide readily available information to you and your health professionals.

The Myositis care plan will usually start whilst you are either attending an outpatient appointment or during your hospital admission. When you have had a diagnosis of Myositis you should have a personalised care plan which takes into account your health and care needs.

Your plan should be discussed and agreed with you by health and social care services. Your personal care plan should address your strengths, needs and preferences as an individual, and take into account the needs of people supporting you.

You should know the Health Care Professionals involved in supporting you and who is coordinating your care, at the early stages it is likely to be your Rheumatology Consultant and Team, but this will move to be your GP; for others it may be a Community Nurse or other worker from primary and community health and care services.

You may need to add/remove sections within the plan, depending on your symptoms and as everyone experiences Myositis differently, so your plan will be tailored to suit you.

It is important that you keep the Individual Personal Care plan up to date and to share this with all health care professionals involved in all stages of your care.

Myositis Individual Personalised Care Plan 2

Health Care Team:

Name: Contact No.:

GP

Consultant Rheumatologist

Rheumatology Clinical Nurse Specialist

Physiotherapist

Occupational Therapist

Community Nurse

Rheumatology Appointments

Dentist

Other:

Other:


Appointments:

Date: Time: Person I am seeing: Place:

Blood Test Appointments:Please note your blood test appointments are important

Date: Time: Place:


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 allergies:Have a list of your known allergies.

Urine sampleA urine dipstick test 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 may indicate a bladder infection- collect the urine sample within 1-2 hours prior to your appointment.


Preparing for your outpatient appointments:

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 TestsEnsure 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 InvestigationsEnsure that all tests and investigation requested from previous appointment 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


Dru

gD

ate

Do

seFr

equ

ency

Rea

son

Pres

crib

ed

by

Imp

ort

ant

No

tice

com

men

t

Pred

nis

olo

ne

(Ste

roid

s)D

aily

Do

no

t m

iss

a d

ose

-

any

pro

ble

ms

talk

to

yo

ur

Rh

eum

ato

log

y Te

amSL

OW

Red

uct

ion

as p

resc

rib

ed 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

amY

earl

y Fl

u

Vac

cin

atio

n r

equ

ired

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

amY

earl

y Fl

u

Vac

cin

atio

n r

equ

ired

Med

icat

ion

Rec

ord

:


Dru

gD

ate

star

ted

Do

seFr

equ

ency

Rea

son

Pres

crib

ed

by

Imp

ort

ant

no

tice

Co

mm

ent

Medication Record


People with Myositis are likely to take several prescription and over the counter medications. The more drugs you take the greater the chance of side effects, drug interactions or mistakes in medications.

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.Includethenameofeachmedicationyouaretaking,along with the dosage information and the reason you are taking it.

Give a copy of your medication to your next of kin See if the “Message in a bottle” scheme can help you

• Maintainaprescriptionmedicationfile. After you read the written material that accompanies your prescription medication,fileitinaplacewhereyoucanfinditeasilyshould you ever have questions about dosage or side effects.

• Use one pharmacy. If possible, have all of your medications filledatthesamepharmacy,sothatyourpharmacistcantrack 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 bottleAvailable from Lions Clubs Headquarters

Tel: 0845 833 9502 or E-mail: [email protected]


Blo

od

s:Pl

ease

en

sure

th

at y

ou

hav

e yo

ur

blo

od

s m

on

ito

red

eve

ry _

____

____

____

____

____

____

__

as d

irec

ted

by

you

r co

nsu

ltan

t.

Dat

eH

BW

BC

Plat

elet

sN

eut-

rop

hils

ESR

CR

PA

LTC

rea-

tin

eU

rea

CK

Uri

ne

An

alys

isB

loo

d

Pres

sure

Wei

gh

t

Blo

od

an

d T

est

Res

ult

s


Dat

eH

BW

BC

Plat

elet

sN

eut-

rop

hils

ESR

CR

PA

LTC

rea-

tin

eU

rea

CK

Uri

ne

An

alys

isB

loo

d

Pres

sure

Wei

gh

t

Blo

od

an

d T

est

Res

ult

s


Dat

eIn

vest

igat

ion

sR

esu

ltO

utc

om

e

Rec

ord

of

Ad

dit

ion

al T

ests

an

d In

vest

igat

ion

s


Living well day to day with Myositis

Living well day to day with Myositis can be achieved by:

• Learning about your body and what is happening to it with Myositis

• Learning about your health professionals, the recommended medications, and what they can do for you

• Find out what can improve your health, such as loosing weightorstartingaflexibilityexerciseprogram

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 Myositis:

• Gather information about Myositis 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.


Pers

on

alis

ed C

are

Plan

Pro

ble

mSy

mp

tom

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Muscular weakness and pain

Loss

of

stre

ng

th in

n

eck,

arm

an

d

leg

mu

scle

s

Inab

ility

to

co

mp

lete

ac

tivi

ties

of

dai

ly li

vin

g

du

e to

mu

scle

ti

red

nes

s

Mu

scle

s fe

elin

g t

end

er

to t

ou

ch


ExerciseisbeneficialforpeoplewithMyositis

Justabouteveryonerealisesexerciseisbeneficialeveniftheydon’t participate in regular exercise. Some people fear that exercisewillcauseMyositisflares-aswellasincreasejointpainandjointstiffness.Theoppositeistrue.Properexercisehelpsdecreasejointpainandstiffness.

Reasons Why Exercise Is Important:1. strengthenthemusclesthatsurroundyourjoints2. maintain and improve bone strength3. improve overall strength and energy4. help you achieve good sleep5. help with weight management 6. improveyourmood,confidence,andoverallwell-being7. improve exercise tolerance8. reduce the cardiovascular risk

Get AdviceYou should consult your Physiotherapist to decide what type ofexercisewouldbemostbeneficialforyou.Forexample,range-of-motionexerciseshelpyoumoveyourjointsthroughtheir full range of motion. Strengthening exercises build muscles and Aerobic exercises build endurance.

Ifregularexercisejustisn’tyourthing,becomeinterestedin a physical activity that you will do regularly. Consider activities like walking, bicycling, swimming, tai chi, and yoga -- to name a few. move beyond fear. Dont fear that exercise will make your disease worse. What you really should fear is -- INACTIVITY


How Often Should People With Myositis Exercise?

• Range-of-motion exercises can be done daily and should be done at least every other day.

• Strengthening exercises should be done every other day unless you have severe pain or swelling.

• Endurance exercises should be done for 20 to 30 minutes three times a week. According to the American College of Rheumatology, 20 to 30 minute exercise routines can be performed in increments of 10 minutes over the course of a day.

Myositis & Exercise: How To Get Started

• Discuss exercise plans with your Physiotherapist.

• Start with supervision from a Physiotherapist and follow the exercise plan 7 days a weeks for 20 to 30 minutes

• Always stretch and warm up with range-of-motion exercises.

• Progress slowly.

• Start strengthening exercises slowly with small weights (a 1- or 2-pound weight can make a big difference).

• Applyheattosorejoints(optional;manypeoplewithdisease start their exercise program this way).

• Use cold packs after exercising (optional; many people with disease complete their exercise routine this way).

• Add aerobic exercise.

• Easeoffifjointsbecomepainful,inflamed,orred,andworkwithyourPhysiotherapiststofindthecauseandeliminate it.

• Choosetheexerciseprogramyouenjoymostandmake


it a habit .Consider appropriate recreational exercise (after doing range-of-motion, strengthening, and aerobic exercise).Fewerinjuriestojointsaffectedbydiseaseoccurduring recreational exercise if it is preceded by range-of-motion, strengthening, and aerobic exercise that gets your body in the best condition possible.

How Much Exercise Is Too Much?

• Most experts agree that if exercise causes pain that lasts for more than 1 hour, it is too strenuous. People with Myositis should work with their physical therapist or doctortoadjusttheirexerciseprogramwhentheynoticeany of the following signs of strenuous exercise:

• Unusual or persistent fatigue, increased weakness, decreasedrangeofmotionincreasedjointswelling,continuing pain (pain lasting more than 1 hour after exercising)

• Itisappropriatetoputjointsgentlythroughtheirfullrange of motion once a day, with periods of rest, during acutesystemicflaresorlocaljointflares.

• Patient can talk to their Physiotherapists about how much restisbestduringgeneralorjointflares.


Not 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.

• Ice and heat packs can prove effective.

It is essential to remember that not all pain is “harmful”. A level of discomfort as you exercise is expected but this will not be causing any physical harm if you are performing the right exercise in the right way and at the correct level.

Living well day to day with Myositis


Pro

ble

mSy

mp

tom

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Fatigue

Tire

dn

ess

un

relie

ved

by

rest

Lack

of

ener

gy

or

mo

tiva

tio

n

Poo

r co

nce

ntr

atio

n

or

mem

ory

Ap

ath

y o

r ‘n

ot

cari

ng

wh

at

hap

pen

s’

Pers

on

alis

ed C

are

Plan


Pro

ble

mSy

mp

tom

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Breathing

Pers

iste

nt

dry

co

ug

h

Sho

rtn

ess

of

bre

ath

Ho

arse

nes

s o

f th

e vo

ice

Lab

ou

red

b

reat

hin

g o

r difficultytaking

a d

eep

bre

ath

Ch

est

tig

htn

ess

Pers

on

alis

ed C

are

Plan


Pro

ble

mSy

mp

tom

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Skin

Red

or

blu

ish

-p

urp

le r

ash

, usu

ally

o

n c

hee

ks, n

ose

, sh

ou

lder

s, u

pp

er

ches

t an

d e

lbo

ws,

or

sun

exp

ose

d a

reas

Purp

le e

yelid

s,

pu

ffy

eyes

or

pu

rple

sp

ots

on

el

bo

ws

or

knee

s

Rag

ged

cu

ticl

es

and

th

icke

nin

g o

f th

e sk

in o

n h

and

s

A s

caly

sca

lp o

r th

inn

ing

hai

r

Pers

on

alis

ed C

are

Plan


Pro

ble

mSy

mp

tom

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Swallowingdifficulty(dysphagia)

Pain

wh

en s

wal

low

ing

Inab

ility

to

sta

rt t

he

swal

low

ing

pro

cess

Pers

iste

nt

cou

gh

ing

or

cho

kin

g w

hile

sw

allo

win

gSe

nsa

tio

n o

f fo

od

stu

ck

in t

he

thro

at o

r ch

est

Lack

of

inte

rest

in

eati

ng

or

taki

ng

mu

ch

lon

ger

th

an n

orm

al t

o

finishameal

Co

ug

hin

g o

vern

igh

t

Freq

uen

t h

eart

bu

rn

Pers

on

alis

ed C

are

Plan


Pro

ble

mSe

lf m

anag

emen

t a

dvi

ceA

ctio

nD

ate

Co

mm

ent/

revi

ewSi

gn

atu

re

Medication

Ster

oid

s –

for

som

e p

atie

nts

Steroidsarethefirstlineof

med

icat

ion

. Ste

roid

s sh

ou

ld

be

take

n o

n a

reg

ula

r b

asis

–

at n

o p

oin

t m

ust

ste

roid

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. F

or

pat

ien

ts

exp

erie

nci

ng

acu

te a

nd

p

rolo

ng

ed d

ysp

hag

ia –

IVI o

r IM

Ste

roid

s m

ay b

e n

eed

ed.

ARUKleaflets-

Ster

oid

s M

eth

otr

exat

eM

yco

ph

eno

late

C

yclo

ph

osp

ham

ide

Azi

ath

iop

rin

e

Mo

nit

ori

ng

Dis

ease

Mo

dif

yin

g A

nti

R

heu

mat

oid

Dru

gs

(DM

AR

DS)

ar

e th

e o

ther

med

icat

ion

s im

po

rtan

t in

man

agin

g

Myo

siti

s

The

Dep

artm

ent

of

Rh

eum

ato

log

y h

old

s al

l of

the

ARUKLeafletsorvisitwww.

arth

riti

sres

earc

h.u

k.o

rg

Pers

on

alis

ed C

are

Plan


Pro

ble

mSe

lf m

anag

emen

t

advi

ceA

ctio

nD

ate

Co

mm

ent/

revi

ewSi

gn

atu

re

Bone Health: Osteoporosis risk

The

trea

tmen

ts

for

Myo

siti

s ca

n

low

er b

on

e m

iner

al

den

sity

lead

ing

to

fr

agile

bo

nes

. Th

is

low

er b

on

e m

iner

al

den

sity

can

dev

elo

p

into

Ost

eop

oro

sis

mea

nin

g y

ou

are

m

ore

su

scep

tib

le t

o

bre

akin

g a

bo

ne,

p

arti

cula

rly

of

the

spin

e, w

rist

an

d h

ip.

Eat

a h

ealt

hy

die

t in

clu

din

g f

oo

ds

hig

h

in c

alci

um

Red

uce

yo

ur

alco

ho

l in

take

Sto

p s

mo

kin

g

Ensu

re y

ou

rem

ain

ac

tive

an

d in

clu

de

low

imp

act

wei

gh

t bearingorspecific

stre

ng

then

ing

ex

erci

ses

in y

ou

r w

eekl

y re

gim

e

Pers

on

alis

ed C

are

Plan


Pro

ble

mSe

lf m

anag

emen

t

advi

ceA

ctio

nD

ate

Co

mm

ent/

revi

ewSi

gn

atu

re

Cardiovascular risk

Inflam

mation

linke

d w

ith

Myo

siti

s in

crea

ses

the

risk

o

f C

ard

iova

scu

lar

Dis

ease

an

d o

ther

ca

rdio

vasc

ula

r ev

ents

. It

is r

eco

mm

end

ed t

hat

al

l pat

ien

ts lo

ok

to

low

er c

ard

iova

scu

lar

risk

by

trea

tin

g

inflam

mationandby

pay

ing

att

enti

on

to

ri

sk f

acto

rs li

nke

d t

o

hea

rt d

isea

se:-

• S

mo

kin

g•

Wei

gh

t•

Hea

lth

y Ea

tin

g

• (

Ch

ole

ster

ol)

• B

loo

d p

ress

ure

• E

xerc

ise

Furt

her

ad

vice

av

aila

ble

fr

om

GP

pra

ctic

es

Pers

on

alis

ed C

are

Plan


Pro

ble

mSe

lf m

anag

emen

t ad

vice

Act

ion

Dat

eC

om

men

t/re

view

Sig

nat

ure

Anxiety, low mood or depression

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 /

curr

ent

stat

e

Co

nta

ct y

ou

r G

P fo

r ad

vise

on

eff

ecti

ve

med

icat

ion

sEx

erci

se r

egu

larl

y –

this

can

hep

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

o

f w

ell b

ein

g

Talk

to

fam

ily a

nd

fr

ien

ds

– le

t th

em

kno

w h

ow

yo

u a

re

feel

ing

an

d t

hat

it

can

be

par

t o

f yo

ur

con

dit

ion

Pers

on

alis

ed C

are

Plan


Problem Self management advice Individual Personal Care

Sup

po

rt f

rom

Oth

ers Youwillfindawealthof

information from Myositis Support Group (UK Charity), who also can direct you to the best possible answers to your questions about your health, future, happiness, independent and relationships.

Also, be sure to ask other Myositis patients for their solutions to some of the problems you are beginning to face, both practical and emotional.

The Myositis Support Group is a UK charity providing advice and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis

Web page:www.myositis.org.uk

Write to: Myositis Support Group, 146 Newtown Road Woolston, Southampton SO19 9HR

Telephone:023 8044 9708 (Mon-Fri 10-3)

Fax: 023 8039 6402

Email: [email protected]

Personalised Care Plan

Date Comment/review Signature


Personalised Care PlanSe

rio

us

com

plic

atio

ns

of

Myo

siti

s ar

e re

lati

vely

rar

e, b

ut

reg

ula

r ch

eck

up

s ar

e recommended,soanyproblemscanbeidentifiedandtreatedatanearlystage.

Seri

ou

s co

mp

licat

ion

s m

ay in

clu

de:

Lun

g

pro

ble

ms

Lungproblemssuchaslungfibrosisaremore

com

mo

n in

peo

ple

wit

h D

erm

ato

yosi

tis.

Rep

ort

an

y si

gn

s o

f sh

ort

nes

s o

f b

reat

h o

r d

ry o

n-g

oin

g c

ou

gh

.

Ove

rlap

Sy

nd

rom

es

Som

e p

atie

nts

hav

e sy

mp

tom

s o

f o

ther

au

to-i

mm

un

e d

isea

ses,

su

ch a

s Lu

pu

s, R

A,

Sjogrens,Scleroderma,Raynaudsetc.

An

y u

nu

sual

sym

pto

ms

sho

uld

be

rep

ort

ed

to a

hea

lth

care

pro

fess

ion

al

Ris

k o

f C

ance

r

Stu

die

s h

ave

sho

wn

an

incr

ease

d r

isk

of

cert

ain

typ

es o

f ca

nce

r lin

ked

to

Myo

siti

s

Can

cer

scre

enin

g is

imp

ort

ant

for

bo

th m

en

and

wo

men

.

Self

exa

min

atio

n s

ho

uld

be

per

form

ed,

All

con

cern

s sh

ou

ld b

e re

po

rted

to

a

hea

lth

care

pro

fess

ion

al


Man

agin

g m

y M

yosi

tis

sym

pto

ms

Sym

pto

ms

Self

Man

agem

ent

Plan

Co

mm

ent/

revi

ew


My

Pers

on

al G

oal

s

Dat

eG

oal

I w

ou

ld li

ke t

o

ach

ieve

Wh

at a

ctio

ns

am I

go

ing

to

tak

e to

ac

hie

ve it

By

wh

enD

ate

ach

ieve

d


Patient Support GroupsThe Myositis Support Group aims to provide information to sufferers and their families to help give them a better understanding of their illness and to relieve the isolation felt by an individual when a rare illness is diagnosed. To guide sufferers in the right direction for treatment, raise awareness of the conditions and to raise funds to promote and support research.

It offers free UK membership, newsletters , information guides, and an annual meeting/conference.

Advice on specialist centres, an interactive website with a Discussion Forum and Email Contacts (Buddy Listing) and Social media site page. (see website for more details)

Myositis Support Group

Newtown Road Tel: 023 8044 9708 (Mon-Fri 10am-3pm)Woolston Fax: 023 8039 6402Southampton Email: [email protected] 9HR Web site: www.myositis.org.uk

MYOSITIS UKMYOSITIS UK

Medical Illustration, ref: 13/5423

my individual personal care plan myositis - · pdf fileindividual personal care plan myositis...

Documents