raise it with your doctor
TRANSCRIPT
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 1/84
A guide to talkingto your doctoror nurse aboutrheumatoidarthritis
RAise it with yourdoctor
The development andprinting of this bookletwas sponsored by RocheProducts Limited andcreated in collaboration
with NRAS.
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 2/84
ContentsIntroduction 3
About rheumatoid arthritis – key signs and symptoms 4
Your healthcare team 6
Treatment goals 10
Communicating with your healthcare team 11
Preparing for your consultation 16
After your consultation 18
Informing loved ones and colleagues 21
Glossary of useful terms 23
Sources of further information 27
Diary 29
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 3/84
RHEUMATOID arthritis (RA) is anautoimmune disease which occurs whenthe body’s tissues are mistakenly attackedby their own immune system, causing pain,swelling and inflammation in the joints.It is a chronic progressive condition whichmeans it can worsen over time and requirescontinuous treatment and management tokeep symptoms under control. RA affectsin excess of 690,000 people in the UK 1 andoccurs more frequently in women thanmen. 2 It is most common after the age of40 but can affect people of any age. 2
RA is an incurable disease thereforebeing aware of changes in your bodywhich may indicate that your RA is notbeing adequately controlled is importantfor your long-term health and wellbeing.Talking honestly about how you are feelingto your healthcare team is essential toensure that they are able to manage yourcondition effectively.
The good news is that, if diagnosed andtreated early, the management of RA issignificantly better than it was 20–30 yearsago and many people go on to live richand fulfilling lives in spite of their condition.
This booklet has been created specificallyfor people with RA, particularly those newlydiagnosed and in need of support, to helpthem understand and communicate thephysical and emotional impact of thecondition to their healthcare team, loved-ones and colleagues. Within the bookletyou will find tips and advice from thosewho have lived with RA for many yearsand are now able to share what they have
Introduction
3
learned with others to help them achievethe best possible care.
For further information and support withyour RA please contact the NRAShelpline on 0800 298 7650 , or [email protected] .
“At NRAS, we are passionateabout helping people to becomeeducated about their condition and develop the confidence andmotivation to use their own skillsand knowledge to take effectivecontrol over their life with RA.Communicating effectively with
friends, family, colleagues andyour healthcare team is all partof that process and learning howand when to access the system.We very much hope that thisbooklet will help you tounderstand the importance of effective communication andhow it can help you to improve
your quality of life. Beingunafraid and confident toexplain how I feel and what myneeds are to my healthcare teamand my family and friends,has certainly helped me over theyears. Good luck. ”
Ailsa Bosworth, CEO, NRAS
1 National Rheumatoid Arthritis Society. The Economic Burden of Rheumatoid Arthritis . March 20102 National Rheumatoid Arthritis Society:
http://www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/what_is_ra.aspx [accessed Aug 2010]
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 4/84
RA affects everyone differently. Formost people it develops quite slowlyat first, yet for others the condition cancome on quickly, making it difficult tocarry out daily activities. You may findthat your symptoms get worse atcertain times. This is often referred toas a ‘flare-up’ and can last from a fewdays to a couple of months. Flare-upsare often difficult to predict and youmay find that your symptoms comeand go with little pain, swelling orinflammation in between. Othersmay find more noticeable ongoingdifficulties. Below is a list of thecommon symptoms you mayexperience:
Swollen and painful jointsPain and swelling around the joints arethe most common visible signs of RA.Any joint can be affected. However ittypically occurs in the joints within thehands, feet and wrists. Often they willbecome swollen, hot, tender to
touch, painful and stiff, and you mayexperience difficulty moving. Typically,RA is symmetrical, meaning it usuallyaffects both wrists or hands in the sameway. Over time joints may becomedeformed through damage to thecartilage and bone therefore a key goalof treatment is to try and prevent jointdamage from occurring. The earlier
someone with RA is treated, the betterthe long-term outcome will be.
Joint stiffnessStiffness and restricted movement isvery common, particularly after longperiods of inactivity, such as sitting orlying in one position for several hours.It is very common to experienceextreme stiffness and difficulty gettingout of bed in the morning. However,this often improves throughout the dayas you start moving around.
Poor grip strengthDeterioration in your overall strengthor grip can often occur as a result of inflamed and painful joints. You mayexperience difficulty undertakingeveryday tasks such as opening jars,doing up buttons, or turning a tap onor off.
FatigueChronic or ongoing fatigue in RA isnot like normal tiredness. It can lastfor days and no amount of sleep willrelieve it. People with RA compare
fatigue to constantly wading throughmud, or walking with bricks in yourshoes. Sometimes lifting a cup,having a bath or brushing your haircan involve more effort than you canmanage. One of the problems withfatigue is that it is an invisible symptomtherefore it is important to describehow you are feeling in detail so that
others can understand.
4
About rheumatoid arthritis –key signs and symptoms
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 5/84
For more information on fatigue referto the ‘Fatigue – beyond tiredness’ information booklet, availablethrough NRAS .
Flu-like symptoms, or generallyfeeling ‘unwell’
You may experience a feeling of havingflu-like symptoms or just feel generally‘unwell’. A loss of appetite and weightloss may also be experienced.
Other effects on the bodyRA is a systemic disease which meansthat it can affect the whole body andthe internal organs. As a result, youmay experience some of the following:• Dryness or inflammation in the eyes• Anaemia (a condition where the
blood is unable to carry enoughoxygen due to a low number of redblood cells, often causing fatigue)
• Depression and anxiety
Other rarer effects may include:
• Lung problems such as painfulbreathing, shortness of breath,lung nodules (lumps) and scarringof the lungs
• Lumps under the skin, known asrheumatoid nodules. Thesecommonly occur on the skin overthe elbows and forearms and areusually painless
Key symptoms• Swollen & painful joints
• Morning joint stiffness
• Poor grip strength
• Fatigue
• Flu-like symptoms
• Lumps under the skin
• Anaemia
• Depression/anxiety
• Heart problems, such as acollection of fluid, nodules andischaemic heart disease (a diseasecharacterised by reduced bloodsupply to the heart muscle)
The risk of these rarer symptoms canoften be reduced by keeping yourcondition under good control throughmedication and maintaining a healthylifestyle i.e. a balanced diet, regularexercise and giving up smoking.
5
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 6/84
Your healthcare team
RA is managed by a multi-disciplinaryteam which means that, at any onetime, you could be seen by, and haveto describe your symptoms to, anumber of individuals.
GP – GeneralPractitioner
Your GP is usually the first point of contact when you initially experiencesymptoms and will be responsible forreferring you to a rheumatologist fordiagnosis if RA is suspected. Althoughthe ongoing management of RA is co-
ordinated by a rheumatologist, yourGP will be kept informed of yourprogress through correspondencefrom the hospital.
It is important to provide your GP withas much information as possible withregard to your condition and thetreatments you are currently taking.This is particularly relevant if you areseeing them about a conditionunrelated to your RA which mayrequire medication. If you are in anydoubt over the medications you havebeen prescribed you should consultyour rheumatology team.
6
“Rheumatoid arthritis has nosingle defining symptom or test, yet we know that earlydiagnosis leading to early treatment preserves functionand maintains employment. So tell your doctor if joints are persistently swollen, painful,and stiff for more than 30minutes each morning; describedifficulties in performing work related tasks or daily activitiessuch as washing and dressing;explain the issues you encounter when informing relatives or
employers of your diagnosis andhow this makes you feel. Drugs, physical therapies and the skillsof the multi-disciplinary teamare there to empower and helpyou navigate your path through such problems.”Dr Mark Devlin,GP
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 7/84
RheumatologistRheumatologists are, simply put,doctors who specialise in rheumaticdiseases – diseases affecting the joints.How regularly you will see yourrheumatologist will depend on the
status of your condition. This could beas regularly as every month if you havevery active disease, or, if your disease isunder good control, the frequency willbe determined by your rheumatologist.
7
During visits it is normal to be asked anumber of questions regarding yourphysical and emotional wellbeing.Although the information you provideis very important in helping yourrheumatologist assess the current stateof your RA, they will also use someother techniques to measure how thecondition may be affecting your bodyand your quality of life. Here are someexamples of tests used:
Sharp ScoreAn x-ray thatmeasures
joint damage.This can alsobe measuredusingultrasound
DAS 28 (Disease Activity Scoreusing 28 joint measurement)This is an examination which looks at28 joints in your hands, wrists, elbows,
shoulders and knees to assess forswelling and tenderness. It also involvesa bloodtest and aconsultationto determinehow youhave beenfeeling
during theweek priorto your
“Rheumatologists know that the more completely themedicines they prescribe switchoff the inflammation associated with rheumatoid arthritis, thebetter the long-term outlook for you. However, it is not justmeasuring inflammation and the long-term outlook thatmatter! What also matters ishow you feel right now. To tryand help address any currentissues, as well as ensure thebest long-term outlook, your rheumatologist or nurse mayassess your disease activity as well as ask you variousquestions regarding your wellbeing”
Professor Peter Taylor,Rheumatologist
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 8/84
Rheumatologynurse specialist
You may also see and speak to arheumatology nurse specialist who isthere to provide you with support bothin hospital and at home. Often yournurse will be your first port of call if youare experiencing any difficulties or havequeries between appointments.Nurses are responsible for co-ordinatingand speaking to the different peopleinvolved in your care and will often bethe one who carries out a physicalexamination following your consultation.
8
Your healthcare team continued
appointment. This is measured on a Visual Analogue Score (see examplebelow). The information gathered isthen added together and you will begiven a disease activity score which isused to guide treatment decisions.For further information on DAS pleaserefer to the ‘Know about your DAS’ information booklet and DVD,available through NRAS
VAS (Visual Analogue Score)This is a simple linear scale rangingfrom 0 – 10 on which you score howmuch pain you are experiencing, where0 = no pain and 10 = extreme pain.
HAQ (Health AssessmentQuestionnaire)This is a questionnaire that askswhether youare able tocarry outdaily tasksaround thehome suchas bathing,getting inand out ofa chair andshopping.
“Nurses want to work with you to make sure that your uniqueand individual needs areconsidered – you are not just acondition but a person with family, friends and a life. So if you can be open and discuss
problems that you feel mighthave an effect on taking your medications, managing your symptoms, or just feeling positive about your condition, the better they will be able tohelp you.”Susan Oliver,Nurse Consultant,Rheumatology
How severe is your pain?
No pain Worst pain imaginable
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 9/84
9
Your full healthcare teamBelow is a chart outlining the people who may be involved in your care now or inthe future:
Your GPThe first port of call whenyou develop symptoms
RheumatologistIf your GP suspects RA heor she will refer you to a
Rheumatologist fordiagnosis
Rheumatologynurse specialist
Help with practical advice onliving with RA. The majority
of Rheumatologydepartments have one
Voluntary organisationOrganisations such as the
National Rheumatoid ArthritisSociety (NRAS), Arthritis
Research UK & Arthritis Careoffer support & information
YOU, the patientThe most importantmember of the team
PhysiotherapistCan help you to maintain
strength and function of the joints & muscles
Occupationalphysiotherapist
Can help you to find new waysof doing everyday activities,
including work. Can also makesplints for affected joints
PodiatristSpecialises in problems with
the feet & ankles
OrthotistMay be called upon to
make insoles and look atthe way you walk
PhlebotomistBlood tests are commonly
used in diagnosis &assessment
RadiographerX-rays are commonly usedin diagnosis & assessment
Social workerCan help with housing
benefits & care at home
DieticianCan help you to maintaina healthy diet & to keep a
healthy weight level
Psychologist or counsellorMay be called on to helpyou with the emotional
adjustment to living with RA
Orthopaedic surgeonSpecialises in operating on
bones & joints
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 10/84
Treatment goals
EVERYONE with RA should have acare plan that sets out their specificneeds and treatment goals. This willinclude medicines and other forms of care that may be helpful such asphysiotherapy or podiatry. You shouldwork together with your rheumatologistand nurse to agree goals for treatment.These should be realistic and shouldhave a timeframe that recognises yourspecific needs and expectations, e.g.‘I want to be able to go shopping onmy own within the next three months.’
During your visits to the clinic thereshould be an opportunity for you todiscuss how close you are toachieving your goals and whatsupport you need to enable you tocontinue your progress.
10
Key communications tipDo not be afraid to tell your healthcare team if you think a medicine isnot working well for you. There may be another treatment that could helpyou feel better. New medicines are being developed all the time and
understanding of RA is growing constantly, which is very positive news ifyou are feeling frustrated that you cannot find a medicine to help you.
“The care plan isyour plan about yourlife and managingyour condition ...make sure you get the best out of it bydiscussing the issues that are important toyou and keep a focuson your achievements
by regularly reviewing them with the team.”Susan Oliver,Nurse Consultant,Rheumatology
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 11/84
Communicating withyour healthcare team
11
IT is very important that you feel able to talk openly and honestly with thehealthcare team responsible for your care. This can be difficult at times as theremay be a number of reasons why you might feel anxious and not able to talk openlyabout how you feel. However, talking openly about your symptoms will help toensure you receive the right information and advice. It will also help you to take anactive part in decisions about your care, including the medicines you will receive.
Challenges & solutions You do not knowhow to describehow you are feelingor what is wrong
Finding the right words• It can sometimes be hard to find the words to
describe your symptoms and the impact that RAis having on you, physically and emotionally
• You may find it helpful to describe everydaysituations and explain how easy or difficult youfind it to carry them out. For example, keep a noteof a selection of everyday tasks and mark howmuch time and effort it takes to perform them:– Getting out of bed in the morning– Showering/bathing/washing and drying
yourself – Getting dressed– Walking up and down the stairs (in the office
or at home)– Preparing a meal– Carrying shopping– Housework– Using a computer– Travelling to and from work– Sitting at a desk for long periods of time
• In the diary section at the back of this bookletyou will find scales to track stiffness, fatigue and
pain which you may find useful to explain howyour RA has been since your last appointment
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 12/84
12
Communicating with your healthcare team continued
Be honest• Your medical team is there to help you but they
can only do that if you are honest about how youare truly feeling
• Admitting that you are struggling physically oremotionally is not a sign of weakness or failure
• Equally, telling your healthcare team that your
symptoms have not improved or aredeteriorating is not a criticism of theirmanagement of your condition
• It is important that they are in full possession ofthe facts in order to make the right treatmentchoices with you
• If you feel intimidated by your consultant oruncomfortable being honest with them, thenperhaps bring a friend or relative along so that
they can support you in asking or answeringquestions
Challenges & solutions
You do not want tosound negative orlet them down ifthe treatment theyhave given youdoes not seem tobe working
You are worriedthat you may betaken off amedicine
The consultationmay feel rushedand you may notfeel there is time to
talk or give enoughdetail about yourproblems
Keep a diary• With the best will in the world, it can sometimes
be difficult to recall symptoms over a long periodof time. It can therefore be helpful to keep a
diary of the symptoms you experience betweenappointments so that you can simply and quicklyrelay these to your consultant and feel confidentthat you have given them an accurate picture of your health
• It may also be helpful to list any priorities youmay have
• You may find it useful to refer to the diary sectionat the back of this booklet
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 13/84
13
Challenges & solutions
You do notunderstandwhat yourrheumatologist or
nurse is telling you
Ask questions• Your healthcare team are experts in their field.
However, that does not necessarily mean they areexpert communicators
• They treat a variety of people, all with differentlevels of knowledge and understanding, and attimes they may use medical jargon that you donot understand
• It is important that you come away from yourconsultation with a clear picture of what has beenagreed. Therefore, do not be scared to ask yourconsultant or nurse to repeat or re-word whatthey have told you, as many times as necessary, in
order for you to understand• It can sometimes be helpful to take a friend or
relative with you so that they can make notes orhelp you recall what was said
“Be honest. When the consultant asks you “How areyou?” don't say “I'm fine” if you’re not! You onlyget to see them every few months and it's important they know exactly how you’re getting on.”Karen Mooney,Patient
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 14/84
14
Communicating with your healthcare team continued
You do not feelthat you know yourhealthcare team wellenough, or perhaps
you do not believethey are interestedin you as a personor how you feel
You may find itdifficult to talkabout intimate andpersonal details
related to thedisease and how itmay be affectingyour life andrelationships
Talk to the right people• Some people are naturally more friendly and
easier to talk to than others• Often it can be easier to talk to your nurse about
intimate or personal details than yourrheumatologist, and they can pass on anyinformation that is relevant to your care
• Rheumatology nurse specialists are specificallytrained in RA and will be aware of many of thecommon difficulties, no matter how intimate
• They are there specifically to provide you withboth physical and emotional support
• It may be easier to talk over the phone to your
nurse or rheumatologist if you feel anxious orembarrassed about an issue. You may also find ithelpful to call a patient helpline
You may be moreconcerned about
other things in yourlife such as “how isthis disease goingto affect my job?”and be reluctantto voice theseconcerns whileyour doctor ornurse is talking to
you about yourmedication
There are no stupid questions, only stupid answers• The key purpose of treatment is to help you
manage your symptoms so that you can live anormal life• Therefore, asking questions about how RA is
going to affect your family life, ability to work etcis important and entirely relevant in a consultation
• If time is limited with your rheumatologist, youshould raise these issues with your nurse who isresponsible for your overall welfare and forworking with other healthcare professionals who
can provide you with the specialist support youmay need
Challenges & solutions
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 15/84
15
Summary box• Keep a diary
• Find the right words
• Be honest
• Ask questions
• Talk to the right people
• Don’t be afraid to ask
“When I have a swollen joint I will measure the joint each day and log it in my diary up untilmy appointment date and then show therheumatologist so we can see if the swelling isincreasing or decreasing. We then decide whataction to take.”
Yiota Orphanides,Patient
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 16/84
16
Preparing for yourconsultation
CONSULTATIONS are a two-wayprocess. As well as providing anopportunity for your consultant toexamine you physically, they providean ideal time for you to ask questions.
You may find it useful to take sometime beforehand to prepare and thinkabout what you would like to get outof your meeting. The following tipsmay be useful:
• Write down a list of four or fivequestions you would like answered
• Bring a diary along, indicatingchanges in your physical andemotional wellbeing since your lastappointment. Try to write downspecific examples of when yoursymptoms were particularlygood/bad and how it affectedyour life
• Think about the future and whatyou would like to achieve in the
short and long-term
• Ask a trusted friend or relative tocome to the consultation with you
• Take a pen and notepad to theconsultation so you can write noteson what the consultant or nurse istelling you
“Taking someone with you, who lives with your condition,is invaluable. Myhusband alwaysattends anappointment with me to offer support andinput, and to remindme what wasdiscussed.”Rebecca Darby,Patient
Top tips• Write down questions
• Bring a diary
• Set goals• Bring a friend
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 17/84
17
Key questions to consider
• What is my treatment plan?• How often will I receive
treatment?• How does my treatmentwork?
• How soon after I starttreatment should I notice animprovement?
• What are the potential sideeffects?
• What should I do if I start
experiencing side effects?• Who should I refer to if I
notice an increase in mysymptoms?
• Who do I contact in anemergency?
• How often will I bemonitored?
• What is my current diseaseactivity score (DAS)?
• What is the next stage if thistreatment does not work?
• When is my nextappointment?
• What else can I do to helpmy RA?
“Doctors love data.Record yoursymptoms in detailevery couple of days, preferably in a chart,and show them this ateach consultation.It also helps you beclear in the long-termabout what's going on!”Franky Stephenson,Patient
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 18/84
18
After your consultation
FOLLOWING your consultation, if youfeel you did not understand somethingor that it had not gone as well as youhad hoped, here are a few tips you canconsider:
Write up notesIf you felt uncomfortable making notesduring the consultation, find a quietarea to sit down after you leave andspend ten minutes writing down notesbefore you go home. Write any wordsthat you did not understand and eitherlook them up or speak to the NRAShelpline
Ask for copies of correspondenceAsk your rheumatologist or nurse (ortheir secretaries) if you can have a copyof the letter that will be sent to your GPabout your appointment
Contact your nurseIf you are unsure about the informationyou have been given, and your hospital
has a nurse advice line, then call andask the nurse to check your notes andexplain the information to you. It maybe necessary for the nurse to obtainyour notes and then arrange anothertime to call you back
Speak to your GPContact your GP to find out if a letter
from your rheumatologist has beenreceived and ask for a copy of the
letter, or ask for an appointment withyour GP who will be able to help youunderstand the information in the letter
Ask for a follow up appointmentIt may be possible to book anotherappointment with your rheumatologistor rheumatology nurse specialist toclear up anything you are unsure about
Ask for further informationAsk your rheumatologist or nurse if there are any information booklets theycan give you to help understand anyareas you are unsure about, or contactNRAS who have information on theirwebsite and many booklets that maybe useful
Contact NRASThe NRAS helpline can provideinformation and support regarding allelements of your care
Summary box• Write up notes• Ask for copies of
correspondence• Contact your nurse• Speak to your GP• Ask for a follow up
appointment• Ask for further information• Contact NRAS
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 19/84
19
What to do if youare unsatisfied withyour consultationIt is important to remember thathealthcare professionals are just normalpeople who happen to be an expert inthis specific area. However, as with allpeople, some are naturally friendly and
helpful, and others are less so. If youare struggling with a particular memberof your healthcare team and you feelyou are not receiving appropriate careand support, you can contact thePatient Advice and Liaison Service(PALS) who are there to help provideyou with information and resolve anyissues you may have with the NHS.
You can also contact NRAS who canguide you in the right direction forfurther help and support.
Tips from patients“Write down any questionsyou have so you have them to
hand during the consultation.This will also enable you tonote down the answers”Lisa Austin
“Building trust and a goodrapport with your team isessential if you are to feel properly informed and supported throughout your treatment. Bearing in mind that thisdisease has no cure, you arelikely to be with your team fora long time. If, however, youcome away from a consultation feeling upset in some way, for whatever reason, havingsomeone you can discuss this with first of all is important for you so that you don’t bottle
things up and worry, sometimesunnecessarily. For example,you may have misunderstoodsomething that was said. TheNRAS helpline is always there to support in these situationsand can help you through anydifficulties.”
Ailsa Bosworth,CEO NRAS
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 20/84
20
After your consultation continued
Top tips• If you feel confused by what the consultant has said to you or can’t
quite remember some of the things he/she has said, you can call thenurse helpline at your hospital for further clarification or as mentionedpreviously, call NRAS – but remember we cannot give you personal
medical advice!• Next time you see your consultant take a close friend or familymember with you and write down everything you want to mention ona list and work through it together
• Don’t be afraid to ask for further clarification if you don’t understandsomething
• If you feel that you have got off on the wrong foot with a healthcareprofessional, take someone with you to the next visit and say “I was abit upset after the last visit because … and I feel that we rather got
off on the wrong foot. Can we talk about what happened?”• In the unlikely event that there is a real personality clash and you feel
that you really don’t want to continue to see a particular consultant orhealth professional there are a couple of things you can do:– Ask your GP to refer you to someone else at a neighbouring
hospital (do bear in mind that consultants rotate around hospitalsin an area and a new consultant will probably ask you why youhave been referred when you were seeing someone else. It’s best
just to be honest.)– Say to the consultant you have fallen out with “I’m sorry but I
think we’re not going to get on very well together, would you beprepared to refer me to a colleague?” At the end of the day, theyare people and will understand if a relationship is just not goingto work
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 21/84
21
Informing loved onesand colleagues
LIVING with a chronic condition likeRA can be challenging. On top of dealing with the condition yourself, itcan often be difficult for loved onesand employers to understand andaccept. However, being open andhonest about what you can andcannot do, and seeking ways toovercome challenges, will ensure youare given the support you need anddeserve. Below are some tips that youmay find useful when explaining yourRA to others:
Be open and honestAlthough there can be some physicalsigns of RA e.g. swollen joints ordisability, many symptoms are notobvious to the untrained eye. By havingRA you are already an expert on thesigns and symptoms which affect you,but your family, friends and colleagueswill need help to understand.Symptoms such as pain, stiffness andtiredness can often be downplayed as
something we all experience time-to-time. It is therefore up to you toeducate others about how severe anddebilitating these symptoms can be,and how it impacts on your life.
Help direct people to furtherinformationTo ease the pressure on you, pointloved ones and colleagues in the rightdirection for further information on RAthrough organisations such as NRAS,or NHS Direct. Your healthcare team,or NRAS, may also be able to provideinformation booklets that you canpass on.
Make people feel involvedAsking for help is not a sign ofweakness and, in fact, makes othersfeel involved and useful. Ask friends orfamily members to accompany you toconsultations or help you with choresfrom time-to-time. If you are involvedwith an organisation like NRAS, includeloved ones or colleagues in meetingsand fund-raising events.
Top tipTry to use analogies, forexample “fatigue feels like
trying to walk with bricks onyour shoes”, or even usephysical examples to illustratesymptoms, such as askingsomeone to try gettingout of bed with somethingheavy resting on top of them.
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 22/84
22
Informing loved ones and colleagues continued
Raise awarenessAt work it is important that you arehonest with your employer about yourcondition and any restrictions this mayhave on your ability to perform your
job. If you have a human resourcesdepartment then consult with them onyour rights regarding sickness anddisability benefits, or you can consultthe Department of Work and Pensionsor the Citizens Advice Bureau. NRAShave a range of booklets available forboth employees and employers whichoffer help and information about workrelated issues. Summary box
• Be open and honest
• Help direct people to furtherinformation
• Make people feel involved• Raise awareness• Find solutions, not problems
Find solutions, not problems You may not be able to go running ormay feel too tired to go out to dinnerwith friends during a flare-up, but thatdoes not mean to say you have tocancel your plans altogether. Suggestalternatives; ask everyone to cook adish and bring it round to you, or gofor a walk instead. If at work, perhapsworking at home a few days a week orwhen you have a flare-up is an option.
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 23/84
23
Glossary of useful terms
A
Active disease – a condition which isdeveloping and not currently undercontrol
Anaemia – a condition which causes adecrease in the number of red bloodcells leading to tiredness, weaknessand shortness of breath
Analgesics – drugs used to controlpain e.g. Paracetamol
Anti-cyclic citrullinated peptide(aCCP) – a type of antibody found insome patients with RA which can beused to indicate the presence of RAand which treatments may produce thebest results
Antibodies – found in blood or otherbodily fluids and used by the immunesystem to identify and neutraliseforeign objects, such as bacteria andviruses
Auto-immune disease – a disease in
which the body’s immune systemcauses illness by mistakenly attackinghealthy cells, organs, or tissues in thebody
B
Biologics – newer type of RA treatment.They work by targeting specificchemical messengers or cells thatactivate inflammation in the body
Biomarkers – are biologic moleculesthat are useful in measuring thepresence or progression of a disease,or the effects of a particular treatment.Anti cyclic citrullinated peptide andrheumatoid factor are biomarkers for RA
C
Care plan – a plan developed betweena patient and a healthcare professionalthat sets out the care and treatment ofa patient
Chronic – an illness marked by longduration or frequent recurrence
Consultation – a meeting between a
healthcare professional and patient todiscuss individual needs and treatments
Controlled disease – a condition whichis stable or under control from treatment
Corticosteroids – steroids used toreduce inflammation in RA
C-reactive protein (CRP) – an
inflammatory marker which is routinelymeasured in blood tests. It is thoughtto be more sensitive than the ESR,although it is not specific to RA
D
Dietician – a specialist in the study of nutrition
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 24/84
24
Glossary of useful terms continued
Disease Activity Score (DAS) – a scoreused to assess the level of diseaseactivity in people with RA and guidetreatment decisions. It is calculatedthrough an examination of joints, aconsultation with the patientregarding their current level of painand a blood test
Disease modifying anti-rheumaticdrugs (DMARDs) – drugs used toreduce joint inflammation and damageby “damping down” the immunesystem in different ways
E
Erythrocyte Sedimentation Rate (ESR) –an inflammatory marker which isroutinely measured in blood tests
F
Fatigue – extreme mental or physicaltiredness
Flare up – a period in which the
symptoms of a disease reappear orworsen
G
General Practitioner (GP) – the firstpoint of contact for all patients with anytype of illnesses. They are responsiblefor referring patients to specialists
H
Health Assessment Questionnaire(HAQ) –a questionnaire that askswhether you are able to carry out normaldaily tasks around the home such asbathing, getting in and out of a chairand shopping
I
Immune system – a network of cells,tissues and organs that work togetherto defend the body against attacks byforeign invaders e.g. tiny organismssuch as bacteria, parasites and fungithat can cause infections
J
Joint damage – affects the movementof joints and how well they can function.Ultrasound is used at an early stage todetect inflammation which may not bevisible on clinical examination as wellas damage/erosion
M
Multi-disciplinary team – a group of health care and social care professionalswho provide different services forpatients in a co-ordinated way
Musculoskeletal system – the systemof muscles, tendons, ligaments, bones,
joints and associated tissues that movethe body and maintain its form
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 25/84
NNon-steroidal anti-inflammatory drugs(NSAIDs)– used to reduceinflammation in RA e.g. Ibuprofen
O
Occupational therapist – someone who
helps patients to recover physically oremotionally and improve their ability toperform tasks in their daily living andworking environments
Orthopaedic surgeon – a surgeon whospecialises in surgery of the muscles,bones, joints and related structures
Orthotist – make custom insoles for
shoes and can measure gait
P
Phlebotomist – a professional whodraws blood for analysis or transfusion
Physiotherapist – a professional whotreats and manages patients withmusculoskeletal problems usingexercises and other forms of physicaltherapy
Podiatrist – a specialist in the care offeet and ankles
Primary care – the first point of contacta person has with the health caresystem e.g. GPs or practice nurses
Progressive – a condition, such as RA,that can get worse over time
Psychologist – a mental healthprofessional who has receivedspecialised training in the study of themind and emotions
R
Radiographer – a member of the
healthcare team who takes x-rays andscans
Remission – the disappearance of thesigns and symptoms of a disease
Rheumatoid factor (RF) – an antibodyproduced by the body's immunesystem which can indicate the presenceof RA. Some people with RA can have
a negative rheumatoid factorRheumatoid nodules – firm, flesh-coloured lumps that grow under theskin close to the affected joints
Rheumatologist – a physicianspecialising in rheumatic diseases
Rheumatology nurse specialist –
a nurse who specialises in providingsupport to those with rheumaticdiseases and works alongside arheumatologist
S
Secondary care – the second stage of the health care system, where a patientis referred by their GP for specialisttreatment and care
25
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 26/84
26
Glossary of useful terms continued
Seropositive/seronegative – serostatusis a term used to refer to the presenceor absence of specific substances inthe blood e.g. antibodies such as aCCPor RF, and can indicate whether aperson is likely to have an enhancedresponse to certain treatments
Sharp Score – an x-ray measurement of changes in joint damage
Social worker – a professionalresponsible for helping individuals,groups, or communities to enhance orrestore their capacity for socialfunctioning
Symmetrical disease – a condition that
causes similar symptoms in both theleft and right sides of the body e.g. inboth hands or both feet
Symptoms – changes in the body thatmay indicate signs of disease activity
Synovial fluid – a small amount of slippery fluid that lubricates allmoveable joints in the body. When the
joint is inflamed there may be a build-up of synovial fluid in the joint causingstiffness and pain
Systemic disease – a disease that canaffect a number of organs in the body
T
Tissue – a term that is applied to agroup of cells that perform a specificfunction. There are different types of tissue, for example synovial tissues lineall moveable joints
Treatment – a type of care for an illnessor an injury that can involve the use of medicine
U
Ultra sound – used at an early stage todetect inflammation which may not bevisible on clinical examination, as wellas damage/erosion
V
Visual Analogue Score (VAS) – a linearscale ranging from 0 – 10 on which apatient scores how much pain they areexperiencing from 0 = no pain to 10 =extreme pain
Voluntary organisations – organisationsestablished to provide support andinformation to certain groups of peoplewith common needs
X
X-ray – used to detect disease or injuryto the bones and joints. In RA they canbe used to detect joint damage and
erosion
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 27/84
27
Sources of further information
National healthservices/guidanceDepartment of HealthThe government departmentresponsible for public health issuesTel: 020 7210 4850
Department of Work and PensionsGovernment department responsiblefor welfare and employment issues
National Institute for Health andClinical Excellence (NICE)An independent organisationresponsible for reviewing andproviding national guidance on allnew treatments with regard to theirclinical and cost effectiveness withinEngland, Wales and Northern Ireland
Patient Advice and Liaison Service(PALS)PALS ensures that the NHS listens to
patients, their relatives, carers andfriends, and answers their questionsand resolves their concerns as quicklyas possible
Scottish Medicines Consortium (SMC)An independent organisationresponsible for reviewing and providingguidance on all new treatments with
regard to their clinical and costeffectiveness within Scotland
General support& informationCitizens Advice BureauOffers help for people needing toresolve their legal and financialproblems by providing free,independent and confidential advice
NHS DirectA national health line providing experthealth advice, information andreassuranceNHS Direct tel: 0845 4647NHS 24 in Scotland tel: 08454 242424
The National Rheumatoid ArthritisSociety (NRAS)NRAS provides support andinformation for people withrheumatoid arthritis, their families,friends and carersTelephone (Freephone) : 0800 298 7650Open Monday–Friday between
09.30am and 4.30pmEmail: [email protected]
Disability supportDisability AllianceA national, registered charity whichworks to relieve the poverty and
improve the living standards of disabled peopleTel: 020 7247 8776
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 28/84
28
Disabled Living FoundationAdvice and information on equipmentHelpline: 0845 130 9177
DIAL UK Provide details of your nearest disabilityadvice and information serviceTel: 01302 310123
MotabilityProvides cars and powered wheelchairsthrough the Motability schemeTel: 0845 456 4566
RicabilityConsumer guides on products andservices for disabled peopleTel: 020 7427 2460
The Forum of Mobility CentresA network of 17 independentorganisations covering the UK andNorthern Ireland, who offerprofessional, high quality information,advice and assessment to individuals
who have a medical condition or arerecovering from an accident or injurywhich may affect their ability to driveor get in and out of a carTel: 0800 559 3636
Pain managementThe British Pain SocietyProvide information about pain clinicsTel: 020 7269 7840
Pain Concern
Offers information and a helplineTel: 01620 822572
Rights &discriminationEquality and Human RightsCommissionA single Commission that acts as onesource of information to advise andtackle discrimination on multiplelevels offering under-representedgroups with a powerful body totackle discriminationHelpline tel:England: 0845 604 6610
Wales: 0845 604 8810Scotland: 0845 604 5510
ComplementarytherapiesInstitute for Complementary andNatural MedicineCan help you find qualifiedpractitioners locallyTel: 020 7237 5165
Sources of further information continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 29/84
29
DiaryPlease indicate your level of fatigue,pain and stiffness over one year.
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 30/84
Week 1Monday
30
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 31/84
Insert month(s):
31
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 2Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 32/84
Week 3Monday
32
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 33/84
Insert month(s):
33
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 4Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 34/84
Week 5Monday
34
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 35/84
Insert month(s):
35
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 6Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 36/84
Week 7Monday
36
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 37/84
Insert month(s):
37
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 8Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 38/84
Week 9Monday
38
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 39/84
Insert month(s):
39
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 10Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 40/84
Week 11Monday
40
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 41/84
Insert month(s):
41
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 12Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 42/84
Week 13Monday
42
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 43/84
Insert month(s):
43
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 14Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 44/84
Week 15Monday
44
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 45/84
Insert month(s):
45
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 16Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 46/84
Week 17Monday
46
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 47/84
Insert month(s):
47
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 18Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 48/84
Week 19Monday
48
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 49/84
Insert month(s):
49
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 20Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 50/84
Week 21Monday
50
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 51/84
Insert month(s):
51
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 22Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 52/84
Week 23Monday
52
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 53/84
Insert month(s):
53
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 24Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 54/84
Week 25Monday
54
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 55/84
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 56/84
Week 27Monday
56
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 57/84
Insert month(s):
57
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 28Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 58/84
Week 29Monday
58
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 59/84
Insert month(s):
59
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 30Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 60/84
Week 31Monday
60
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 61/84
Insert month(s):
61
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 32Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 62/84
Week 33Monday
62
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 63/84
Insert month(s):
63
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 34Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 64/84
Week 35Monday
64
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 65/84
Insert month(s):
65
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 36Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 66/84
Week 37Monday
66
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 67/84
Insert month(s):
67
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 38Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 68/84
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 69/84
Insert month(s):
69
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 40Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 70/84
Week 41Monday
70
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 71/84
Insert month(s):
71
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 42Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 72/84
Week 43Monday
72
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 73/84
Insert month(s):
73
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 44Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 74/84
Week 45Monday
74
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 75/84
Insert month(s):
75
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 46Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 76/84
Week 47Monday
76
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 77/84
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 78/84
Week 49Monday
78
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 79/84
Insert month(s):
79
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 50Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 80/84
Week 51Monday
80
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
Patient diary continued
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 81/84
Insert month(s):
81
V e r y
g o o d
G o o d
A v e r a
g e
B a d
V e r y
b a d
Week 52Monday
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Stiffness
Pain
Fatigue
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Questions or concerns to be raised at your next appointment:
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 82/84
82
Notes
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 83/84
8/13/2019 Raise It With Your Doctor
http://slidepdf.com/reader/full/raise-it-with-your-doctor 84/84
RAise it with your doctor is an update of the highly successful Explaining your symptoms booklet which was launched by the National Rheumatoid ArthritisSociety (NRAS) in 2008. This booklet has been created specifically for people withrheumatoid arthritis (RA). It aims to provide information and practical advice tohelp you understand and communicate the physical and emotional impact ofyour RA to healthcare professionals, loved ones and colleagues.
Throughout the booklet you will find hints, tips and advice from experts and thosewho have lived with RA for many years. These individuals want to share what theyhave learned to help you to receive the best possible care and support.
Achieving a better life for people living with RA is the vision of NRAS. One of theways we achieve this is by providing high quality health and social care informationfor people living with RA, their families, friends and carers.
We hope that this booklet provides you with the confidence to discuss your RAwith your healthcare team, starting from your very first consultation, right throughto your regular check-ups with your rheumatologist, nurse and other members of the care team.
NRAS is always interested to hear from people with RA who have stories to tell.If you would like to share your story, please contact NRAS by [email protected] or by calling NRAS on 01628 823524 .
Other publications that you may find useful with regard to other aspects of yourRA are shown below and are available from NRAS.
Fatigue –Beyond Tiredness
Know about yourDAS series (bookletsand DVDs)