RAise it! - NRAS - National Rheumatoid Arthritis Society It.pdf · of your life. However, NRAS has...

A guide to help you talk to your doctor or nurse about rheumatoid arthritis, your treatment and your goals, including a diary

RAise it!

RAise it!

Sept 2013

2 3

Introduction .................................................................................................. 4

About rheumatoid arthritis – key signs and symptoms .............................................. 6

Your healthcare team .............................................................................................. 8

Disease progression and assessment .................................................................... 10

Treatment .............................................................................................................. 13

Consultations ........................................................................................................ 18

Communicating with your healthcare team .......................................................... 22

Glossary of useful terms ....................................................................................... 28

Sources of further information ............................................................................. 31

Diary ...................................................................................................................... 35

Contents

4 5

This new edition of the RAise it! booklet has been designed to help people like you with RA to follow these pledges and work together with healthcare professionals to understand and take responsibility for your RA.

The booklet will also help you to understand and communicate the physical and emotional impact of the condition to your healthcare team. This includes tips and advice from those who have lived with RA for many years and are now able to share what they have learned with you, to help you secure the best possible care and treatment to achieve the goals you have set.

For further information and support with your RA, please contact the NRAS helpline on 0800 298 7650 or email [email protected]

RAise it! is a collaborative project between the National Rheumatoid Arthritis Society (NRAS), Roche Products Ltd and Chugai Pharma UK Ltd, funded by Roche and Chugai. Further copies of this booklet can be requested from NRAS directly or, alternatively, downloaded from the NRAS website (www.nras.org.uk).

At NRAS, we are passionate about helping people to become educated about their condition and develop the confidence and motivation to use their own skills and knowledge to take effective control over their life with RA.

Communicating effectively with your healthcare team is all part of that process and learning how and when to access the system. We very much hope that this booklet will help you to understand the importance of effective communication and how it can help you to improve your quality of life.

Being unafraid and confident to explain how I feel and what my needs are to my healthcare team has certainly helped me over the years. Good luck.

Ailsa Bosworth, CEO, NRAS

“

“Introduction

Welcome to RAise it! – previously RAise it with your doctor – which has been updated and designed to offer more insights than ever into the challenges and solutions related to rheumatoid arthritis (RA), to help you communicate effectively with your healthcare team and take greater responsibility for managing your RA.

RA is an autoimmune disease which occurs when the body’s tissues are mistakenly attacked by their own immune system, causing pain, swelling and inflammation in the joints. It is a chronic, progressive condition which means it can worsen over time and requires continuous treatment and management to keep symptoms under control. RA affects in excess of 690,000 people in the UK1 and occurs more frequently in women than men.2 It is most common after the age of 40 but can affect people of any age.3

RA is an incurable disease, therefore being aware of changes in your body which may indicate that your RA is not being adequately controlled is important for your long-term health and wellbeing. Talking honestly about how you are feeling to your healthcare team is essential to ensure that they are able to manage your condition effectively and you are given the best treatment for you.

The good news is that, if diagnosed and treated early, the management of RA is significantly better than it was 20-30 years ago. Early diagnosis and treatment help to minimise the impact of the disease and in some cases can lead to remission.

RAise it! also serves to support NRAS’ Responsibility Deal: a deal for people with RA and for those involved in making the decisions that affect the services and care people with RA receive.

The NRAS Responsibility Deal is the result of a consultation exercise held in 2012, gathering responses from over 700 NRAS members and members of the public with an interest and connection to the disease. As a result, pledges for four key audiences were developed, including two for people with RA:

I pledge to become more knowledgeable about RA and take greater responsibility for managing my disease.

I pledge to work closely with my healthcare professionals to ensure that I can lead a better quality of life.

3

3

6 7

Are you worried about the long-term joint damage that can be caused by RA? RAise it!For more information on fatigue refer to the ‘Fatigue – beyond tiredness’ information booklet, available through NRAS (www.nras.org.uk).

Flu-like symptoms or generally feeling ‘unwell’You may experience a feeling of having flu-like symptoms or just feel generally ‘unwell’. A loss of appetite and weight loss may also be experienced.

Other effects on the bodyRA is a systemic disease which means that it can affect the whole body and the internal organs, although this will differ according to each individual person. As a result, you may experience:

• Dryness or inflammation in the eyes

• Anaemia (a condition where the blood is unable to carry enough oxygen due to a low number of red blood cells, often causing fatigue)

• Osteoporosis (a condition where the quantity and quality of bone is reduced)

Other more rare effects which could be connected with RA include lung problems such as painful breathing, or heart problems. The risk of these effects can often be reduced by keeping your condition under good control through medication and maintaining a healthy lifestyle i.e. a balanced diet, regular exercise and not smoking.

If you are concerned about any potential effects of RA more information can be accessed via the NRAS website or by calling the NRAS helpline or by speaking to your rheumatology healthcare professionals.

Key symptoms

• Swollen and painful joints

• Morning joint stiffness

• Poor grip strength

• Fatigue

• Flu-like symptoms

• Anaemia

• Depression/anxiety

If you or someone close to you has been diagnosed with RA, it can be a difficult time as you adjust to the news that you have a disease which will affect you for the rest of your life. However, NRAS has a vast amount of information available on their website (www.nras.org.uk).

RAise it!

RA affects everyone differently. For most people it develops quite slowly at first, yet for others the condition can come on quickly, making it difficult to carry out daily activities. You may find that your symptoms get worse at certain times. This is often referred to as a ‘flare-up’ and can last from a few days to a couple of months. Flare-ups are often difficult to predict and you may find that your symptoms come and go with little pain, swelling or inflammation in between. Others may find more noticeable on-going difficulties. Below is a list of the common symptoms you may experience:

Swollen and painful jointsPain and swelling around the joints are the most common signs of RA. Any joint can be affected. However, it typically occurs in the joints within the hands, feet and wrists. Often they will become swollen, hot, tender to touch, painful and stiff, and you may experience difficulty moving. Typically, RA is symmetrical, meaning it usually affects both wrists and hands in the same way. Over time joints may become deformed through damage to the cartilage and bone; therefore a key goal of treatment is to try and prevent joint damage from occurring. This can be monitored using a Disease Activity Score (DAS28), which will be addressed in more detail in later sections of this booklet. The earlier someone with RA is effectively treated, the better the long-term outcome and possible prospects for disease remission.

Joint stiffnessStiffness and restricted movement is very common, particularly after long periods of inactivity, such as sitting or lying in one position for several hours. It is very common to experience extreme stiffness and difficulty getting out of bed in the morning. However, this often improves throughout the day as you start moving around.

Poor grip strengthDeterioration in your overall strength or grip can often occur as a result of inflamed and painful joints. You may experience difficulty undertaking everyday tasks such as opening jars, doing up buttons, or turning a tap on or off.

FatigueChronic or on-going fatigue in RA is not like normal tiredness. It can last for days and no amount of sleep will relieve it. People with RA compare fatigue to constantly wading through mud, or walking with bricks in your shoes. Sometimes lifting a cup, having a bath or brushing your hair can involve more effort than you can manage. One of the problems with fatigue is that it is an invisible symptom therefore it is important to describe to your doctor or nurse how you are feeling in detail so that they can understand.

About RA – key signs and symptoms

8 9

Healthcare rheumatology team Below is a chart outlining the people who may be involved in your care now or in the future, depending on their availability within your area and your specific needs.

Your healthcare team

RA is managed by a multi-disciplinary team which means that, at any one time, you could be seen by, and have to describe your symptoms to, a number of individuals.

GP – General PractitionerYour GP is usually the first point of contact when you initially experience symptoms and will be responsible for referring you to a rheumatologist for diagnosis if RA is suspected. Although the on-going management of RA is co-ordinated by a rheumatologist, your GP will be kept informed of your progress through correspondence from the hospital.

It is important to provide your GP with as much information as possible with regard to your condition and the treatments you are currently taking. This is particularly relevant if you are seeing them about a condition unrelated to your RA which may require medication. If you are in any doubt about the medications you have been prescribed you should consult a member of your rheumatology team.

Are you in any doubt about the medications you have been prescribed? RAise it!

Rheumatologists Rheumatologists are, simply put, doctors who specialise in rheumatic diseases – which are diseases affecting the joints.

How regularly you see your rheumatologist will depend on the status of your condition. This could be as regularly as every month if you have very active disease, or, if your disease is under good control, the frequency will be determined by your rheumatologist. See the section on ‘disease progression’ for more information.

Rheumatology nurse specialistsYou may also see and speak to a rheumatology nurse specialist who is there to provide you with support. Often your nurse will be your first port of call if you are experiencing any difficulties or have queries between appointments. Nurses are responsible for co-ordinating and speaking to the different people involved in your care and will often be the ones who carry out a physical examination following your consultation.

RAise it!

Nurses want to work with you to make sure that your unique and individual needs are considered – you are not just a condition but a person with family, friends and a life. So if you can be open and discuss problems that you feel might have an effect on taking your medications, managing your symptoms, or just feeling positive about your condition, the better they will be able to help you.

Susan Oliver, Nurse Consultant, Rheumatology

“

“

Your GPThe first port of call when you develop symptoms Voluntary OrganisationsOrganisations such as NRAS, Arthritis Research UK & Arthritis Care offer support and information PharmacistBased either in the hospital or the community, the pharmacist can be an invaluable source of support and information about your medications PhlebotomistTakes blood to be tested for analysis to help in diagnosis and assessment DietitianCan help you to maintain a healthy diet and to keep a healthy weight level

Consultant RheumatologistMakes the initial diagnosis and plans your treatment, monitors how it is working and makes changes when needed PhysiotherapistCan help you to maintain strength and function of the joints and muscles

RadiographerX-rays and other imaging techniques such as ultrasound and MRI scans are commonly used in diagnosis and assessment Psychotherapist or CounsellorMay be called on to help you with the emotional adjustment to living with RA

Rheumatology Nurse SpecialistHelps with practical advice on living with RA. The majority of Rheumatology departments have one Occupational TherapistCan help you to find new ways of doing everyday activities, including work. Can also make splints for affected joints PodiatristSpecialises in problems caused to the feet and ankles by your RA, often working with an Orthotist who may be called upon to make insoles for your footwear to help improve your walking pattern Social WorkerCan help with housing benefits and care at home Orthopaedic SurgeonSpecialises in operating on bones and joints

The TeamYou may have access to all or some of the following in order to manage your RA:

YOU, the Patient(The most important member of the team)

10 11

Do you understand whether your RA has progressed and what your rheumatologist has suggested to address this if appropriate? RAise it!

Disease progression and assessment

DAS28 (Disease Activity Score using 28 joint measurements)

This is an examination which looks at 28 joints in your hands, wrists, elbows, shoulders and knees to assess for swelling and tenderness. It also involves a blood test and a consultation to determine how you have been feeling during the week prior to your appointment. This is measured on a Visual Analogue Score (see example on page 12). The information gathered is then added together and you will be given a disease activity score which is used to guide treatment decisions.

For further information on DAS28 please refer to the ‘Know about your DAS’ information booklet and DVD, available through NRAS.

Rheumatologists know that the more completely the medicines they prescribe switch off the inflammation associated with RA, the better the long-term outlook for you. However, it is not just measuring inflammation and the long-term outlook that matter! What also matters is how you feel right now. To try and help address any current issues, as well as ensure the best long-term outlook, your rheumatologist or nurse may assess your disease activity as well as ask you various questions regarding your wellbeing.

Professor Peter Taylor, Rheumatologist

“

“

RAise it!

DISEASE ACTIVITY SCORE

Disease remission

Low disease activity

Moderate disease activity

High disease activity

< 2.6 2.6–3.2 3.2–5.1 >5.1

Disease progression and assessment

Disease progression RA is not a constant condition and most people experience some disease progression during their lives. You may have periods of mild or no symptoms that can last for months, but you may then experience a ‘flare-up’ where the symptoms of your RA reappear or become more pronounced.

There are treatments that can help with the management of your RA and each person responds to the disease differently. What can you expect? That depends on many factors:

• How advanced your RA is at the time you are diagnosed

• Your age at the time you are diagnosed

• How ‘active’ your disease is

It is worth remembering that even if your symptoms appear to be improving, long-term joint damage can sometimes take place without you even realising it, so it’s important to continue to monitor your RA and manage it as aggressively as possible. When the signs and symptoms of RA disappear and remain that way over a significant period of time, this is classed as remission from RA.

The most important thing you can do to make sure you understand the progression of RA is to see a rheumatologist who will do a complete examination of your joints with laboratory tests and X-rays.

At later visits, your rheumatologist can re-check your joints and do further tests and X-rays to see if the disease has progressed any more. If your RA is progressing, there are good treatment options to slow it down.

Don’t overlook the effect your RA can have on your mental health. If you are having trouble coping, seek help. A multi-disciplinary team involving your GP, district nurse, rheumatoid specialist nurse, occupational therapist, physiotherapist and psychotherapist or counsellor can help you deal with the long-term uncertainty and limitations of RA.

The good news is treatment is improving and, in many cases, can delay progression of RA. There has been significant progress made in the area of RA treatment over the last few years which means patients now have many options.

12 13

Treatment RA is managed through a range of interventions including physiotherapy, medical intervention and surgery. Whilst there is no known cure for RA, everyone with RA should have a care plan that sets out their individual requirements and treatments. You should work together with your rheumatologist and nurse to agree your treatment path. Treatment success should allow for realistic goals that should have a timeframe that recognises your specific needs and expectations, e.g. personal goals may include, ‘I want to be able to go shopping on my own within the next three months.’

There are many treatment options and during your visits to the clinic there should be an opportunity for you to discuss these options and what is best for you.

Which drugs are used?Conventional non-biologic treatments

The following treatments address the pain of RA:

• Analgesics (pain medication) e.g. paracetamol, which help to control pain

• Non-steroidal anti-inflammatory drugs (NSAIDs) e.g. aspirin, ibuprofen, which work quickly to relieve the painful symptoms and inflammation of RA4

The following treatments limit the progression of the disease:

• Disease-modifying anti-rheumatic drugs (DMARDs) e.g. methotrexate, sulfasalazine, leflunomide, which slow the course of the disease4

• Steroids, which reduce inflammation and provide a ‘sense of well-being’ 4

Treatment

The care plan is your plan about your life and managing your condition. Make sure you get the best out of it by discussing the issues that are important to you and keep a focus on your achievements by regularly reviewing them with the team.

Susan Oliver, Nurse Consultant, Rheumatology

“

“

Sharp score

This assessment involves measuring any joint damage that can be seen on x-rays. Ultrasounds can also be used.

VAS (Visual Analogue Score)

This is a horizontal line, usually 10cm in length, on which you mark the point that represents the pain you are experiencing.

HAQ (Health Assessment Questionnaire)This is a questionnaire that asks whether you are able to carry out daily tasks around the home such as bathing, getting in and out of a chair and shopping.

JSN (joint space narrowing): 9-point scale with 0.5 increments13 sites/hand0 = normal0+ = questionable1 = mild (local)1+ = mild,worse2 = moderate (loss <50% JSN)2+ = moderate, worse3 = severe (loss >50% JSN)3+ = severe, worse4 = ankylosis or dislocation

No Pain Very Severe Pain

RAise it!

Do you know how your HCP measures your RA? If not, RAise it!

Without any

difficulty

With some

difficulty

With much

difficulty Unableto do

Dressing & Grooming

Arising

Eating

Walking

Are you able to:- Dress yourself, including tying shoelaces and doing buttons?- Shampoo your hair?

Are you able to:- Stand up from an armless chair?- Get in and out of bed?

Are you able to:- Cut your meat?- Lift a full cup or glass to your mouth?- Open a new milk carton?

Are you able to:- Walk outdoors on flat ground?- Climb up five steps?

Please check the response which best describes your usual abilities OVER THE PAST WEEK:

14 15

There are DAS28 information materials available on the NRAS website (www.nras.org.uk) including a patient booklet and DVD explaining how the DAS28 score measures the progression of RA.

Remission: a personal issueThe goal of treatment is to reach the lowest realistic disease activity state for you. This could mean achieving remission (clinical remission is defined as having a DAS28 score of less than 2.6), to be symptom free or to have significantly reduced symptoms. The reality of reaching a DAS28 of less than 2.6 will vary depending on the individual and the severity of your RA as well as the length of time since diagnosis. Your doctor or nurse will be able to explain fully what remission means for you in the context of your RA. In a recent survey by NRAS of over 1,000 people with RA, it was found that 82% of patients do not know their DAS28 score, although nearly half (43%) believed that knowing their DAS28 score is important to the management of their RA.9

It is very important to get your RA to the lowest disease state possible for you to ensure underlying joint damage is kept to a minimum.

Do you understand what remission could mean for you? RAise it!

Considerations of treatmentWhen you’re making decisions with your healthcare team about drug treatments for your RA, make sure you are fully informed about your options. You might want to discuss:

• Why are you recommending this medicine?

• What does it do? / How does it work?

• How successful has it been for others?

• What side effects am I likely to get? Will I need other medication for those?

• Are there other risks I need to know about?

• What kind of monitoring is needed and why? Is this different from my current monitoring?

• Will it affect or be affected by other medicines I take?

• When and how should I take it?

• How long should I need to take it for?

• Will I need to make any changes to my lifestyle?

• How long will I have to wait before I notice any improvement in my symptoms?

• Who can I contact if I have more questions?

RAise it!

Treatment

Biologic treatments

The following treatments work by targeting different parts of the RA disease pathway, blocking chemical actions in the body to limit the progression of the disease:

• Anti-tumour necrosis factor (anti-TNF) e.g. etanercept, infliximab, adalimumab, certolizumab and golimumab, block the action of a chemical called TNF4,5

• Interleukin 6 (IL-6) blockade e.g. tocilizumab disrupts the IL-6 signalling pathway within the immune system, reducing inflammation and the progression of the disease6,7

• B-cell therapy e.g. rituximab selectively targets and depletes B-cells which play a key role in the development of RA, preventing the effects that cause the disease symptoms

• T-cell co-stimulation therapy e.g. abatacept modifies a signal that leads to the progression of RA8

Biologic treatments are typically only available after conventional non-biological treatments have been tried, and are usually taken in combination with methotrexate or sometimes with another DMARD.

For more information, please refer to the ‘Biologics: The story so far’ booklet, available from NRAS (www.nras.org.uk).

Combination and monotherapy

You may be given one treatment for your RA (monotherapy) or a number of different treatments (combination therapy), which

your rheumatologist will determine based on your specific needs and your diagnosis and treatment history.

Some people cannot take or tolerate certain treatments for various reasons, including side effects experienced, planned pregnancy, skin reactions at the site of injections or infection. It’s important to remember that treatment dosages and the way they are given can be changed and that there are numerous options available, so you should speak with your rheumatologist to identify the right treatment(s) for you.

Goals of treatmentYour RA team will recommend treatment to progress towards the lowest ‘disease state’ for you, which may be remission from RA. Treatment should reduce the signs and symptoms of the disease, including the pain, stiffness and fatigue that can be associated with RA.

The effectiveness of your treatment can be monitored by you and your team by the reduction in signs and symptoms of the disease and with a disease activity score (such as DAS28, see page 11).

RAise it!

Are you on the right treatment for you? RAise it!

16 17

Monitoring guidelines NICE published guidelines in February 2009 setting out advice for RA professionals and patients on the best models of treatment for RA from diagnosis through to treatment and on-going specialist care.

Key recommendations from the guidelines include:

• If you have suspected on-going joint inflammation, you should be referred to a specialist. The referral should be urgent if you have any of the following: the small joints of the hands or feet are affected; more than one joint is affected; there has been a delay of three months or longer between noticing symptoms and your seeking medical advice.10

• In all patients with early RA, a disease monitoring tool such as DAS28 should be used to measure disease activity until a level of disease control agreed with an RA specialist has been achieved by appropriate treatment.

• You should have access to a multidisciplinary team (MDT) which should provide the opportunity for on-going assessments of the effect of the disease on your everyday life (such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, impact on sexual relationships) and access to a named member of the MDT (for example, the RA specialist nurse) who is responsible for co-ordinating your care.

The NICE Guideline on RA is available at: www.nice.org.uk/CG79

Treatment

Key communications tipDo not be afraid to tell your healthcare team if you think a medicine is not working well for you. There may be another treatment that could help you feel better. New medicines for RA are being developed all the time and understanding of the disease is growing constantly.

Treatment cards: informing othersIf your treatment includes biologics, your rheumatologist or nurse will be able to give you a Biologics Alert Card, which you should carry at all times and show to any other person you consult about your health.

Side effects It can be challenging to differentiate your RA symptoms from the side effects of your treatment. Side effects can include feeling sick, diarrhoea, headaches, fever, sore mouth, dizziness, tiredness, a rash and depending on how treatment is given, skin reactions at the site of injections. There are a number of different treatment options available so do talk to your rheumatologist about how you are feeling and see if there are any ways to minimise or avoid the effects that you’re feeling.

Concerned about side effects? RAise it!

Reporting adverse side effects Talk to your doctor or nurse about the Yellow Card Scheme: an initiative set up by the Medicines and Healthcare Products Regulatory Agency (MHRA) for healthcare professionals and patients to report adverse side effects of medicines. http://yellowcard.mhra.gov.uk/

NICE and SMC guidelines for RA treatment The National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) provide guidance for the UK, recommending the use of different treatments for RA and the order in which treatments should be prescribed, based on reviews of clinical and health economic data.

For more information, please go to:

NICE: www.nice.org.uk

SMC: www.scottishmedicines.org.uk/Home

RAise it!

18 19

Key questions to consider• What is my treatment plan?

• How often will I receive treatment?

• How does my treatment work?

• Will I be monitored so I know if/how my treatment is working?

• What is the next stage if this treatment does not work?

• What are my personal and/or treatment goals?

• How soon after I start treatment should I notice an improvement?

• What is my current disease activity score (DAS28)?

• What does my DAS28 mean in relation to my treatment and remission?

• How often will my DAS28 score be assessed?

• My DAS28 is high but I don’t have any symptoms. Does this mean I am disease-free?

• What are the potential side effects of the treatment(s) that I am taking?

• What should I do if I start experiencing side effects?

• Who should I talk to if I notice an increase in my symptoms?

• Who do I contact in an emergency?

• How often will I be monitored?

• When is my next appointment?

• What else can I do to help my RA?

After your consultationFollowing your consultation, if you feel you did not understand something or that it did not go as well as you had hoped, here are a few tips you can consider:

• Write notes. If you felt uncomfortable making notes during the consultation, find a quiet area to sit down after you leave and spend ten minutes writing down notes before you go home. Write down any words that you did not understand and either look them up or speak to the NRAS helpline.

• Ask for copies of correspondence. Your rheumatologist or nurse (or their secretaries) will send a letter to your GP about your appointment and you can ask for a copy of the letter if you’d like.

Doctors love data. Record your symptoms in detail every couple of days, preferably in a chart, and show them this at each consultation. It also helps you be clear in the long term about what’s going on!

Franky Stephenson, Patient

““Consultations

Preparing for your consultationConsultations are a two-way process. As well as providing an opportunity for your consultant to examine you physically, they provide an ideal time for you to ask questions and set personal or treatment goals with your rheumatologist.

The following tips may be useful:

• Write down a list of key questions you would like answered

• Bring a diary along, indicating changes in your physical and emotional wellbeing since your last appointment. Try to write down specific examples of when your symptoms were particularly good/bad and how it affected your life

• Think about the future and what you would like to achieve in the short and long term

• Ask a trusted friend or relative to come to the consultation with you

• Take a pen and notepad to the consultation so you can write notes on what the consultant or nurse is telling you

During your consultation

Understanding your RA signs and symptoms

It is important that your doctor or nurse explains what your signs and symptoms mean so that you understand why you may be experiencing them. Pain, stiffness and fatigue are all related to RA and are all personal experiences. Healthcare professionals have many different terms for pain, e.g. acute pain (short, sharp,

shooting pain), persistent or chronic (long term) or recurrent (pain that comes and goes, like a headache). It is not unusual to have more than one sort of pain, or pain in different places.

Ask your rheumatologist or nurse if there are any information booklets they can give you to help understand any topics or areas you are unsure about, or contact NRAS who have information on their website and many booklets that may be useful.

The NRAS helpline (tel. 0800 298 7650) can provide information and support regarding all elements of your care.

Top tips• Write down questions

• Bring a diary

• Set goals

• Bring a friend or a family member

Taking someone with you, who lives with your condition, is invaluable. My husband always attends an appointment with me to offer support and input, and to remind me what was discussed.

Rebecca Darby, Patient

““

20 21

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 the nurse helpline at your hospital for further clarification or as mentioned previously, NRAS are there to provide you with support and information, but remember they cannot give medical advice.

• 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 or health 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 hospitals in an area and a new consultant will probably ask you why you have 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 be prepared to refer me to a colleague?”. At the end of the day, they are people and will understand if a relationship is just not going to work.

Building trust and a good rapport with your team is essential if you are to feel properly informed and supported throughout your treatment. Bearing in mind that this disease has no cure, you are likely to be with your team for a long time. If however, you come away from a consultation feeling upset in some way, for whatever reason, having someone you can discuss this with first of all is important for you so that you don’t bottle things up and worry, sometimes unnecessarily. For example, you may have misunderstood something that was said. The NRAS helpline is always there to support in these situations and can help you through any difficulties.

Ailsa Bosworth, CEO, NRAS

“

“Consultations

Contact your nurseIf you are unsure about the information you have been given, and your hospital has a nurse advice line, then call and ask the nurse to check your notes and explain the information to you. It may be necessary for the nurse to obtain your notes and then arrange another time to call you back.

Summary box

• Ask for copies of correspondence

• Contact your nurse

• Speak to your GP

• Ask for a follow up appointment

• Write up your own notes

• Ask for further information

• Contact NRAS

What to do if you are unsatisfied with your consultationIf you are struggling with a particular member of your healthcare team or feel that you are not receiving appropriate care and support, you can contact your nearest Patient Advice and Liaison Service (PALS) that is there to help provide you with information and resolve any issues you may have with the NHS.

You can also contact NRAS who can guide you in the right direction for further help and support.

Write down any questions you have so you have them to hand during the consultation. This will also enable you to note down the answers.

Lisa Austin, Patient

““

22 23

The consultation may feel rushed and you may not feel there is time to talk or give enough detail about your problems

Keep a diary

• With the best will in the world, it can sometimes be a challenge to recall symptoms over a long period of time. It can therefore be helpful to keep a diary of the symptoms you experience between appointments so that you can simply and quickly relay these to your consultant and feel confident that you have given them an accurate picture of your health.

• It may also be helpful to list any priorities you may have.

• You may find it useful to refer to the diary section at the back of this booklet.

You do not want to sound negative or let them down if the treatment they have given you does not seem to be working. You are worried that you may be taken off a medicine

Be honest

• Your medical team is there to help you but can only do that if you are honest about how you are truly feeling.

• Admitting that you are struggling physically or emotionally is not a sign of weakness or failure.

• Equally, telling your healthcare team that your symptoms have not improved or are deteriorating is not a criticism of their management of your condition.

• It is important that they are in full possession of the facts in order to make the right treatment choices with you.

• If you feel intimidated by your consultant or uncomfortable being honest with them, then perhaps bring a friend or relative along so that they can support you in asking or answering questions.

RAise it!

Communicating with your healthcare team It is very important that you feel able to talk openly and honestly with the healthcare team responsible for your care. This can be difficult at times as there may be a number of reasons why you might feel anxious and not

able to do so with the people/professionals responsible for your care. However, talking about your symptoms will help to ensure you receive the right information, care, treatment and advice. It will also help you to take an active part in decisions about your care, including the medicines you will receive.

You do not know how to describe how you are feeling or what is wrong

Finding the right words

• It can sometimes be hard to find the words to describe your symptoms and the impact that RA is having on you, physically and emotionally.

• You may find it helpful to describe everyday situations and explain how easy or difficult you find it to carry them out. For example, keep a note of a selection of everyday tasks and mark how much 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 booklet you will find scales to track stiffness, fatigue and pain which you may find useful to explain how your RA has been since your last appointment.

Challenges & solutions

Communicating with your healthcare team

Do you have concerns/priorities you want to discuss with your healthcare team? RAise it!

24 25

You do not understand what your rheumatologist or nurse is telling you about your condition or treatment in general

Keep asking questions!

• Your healthcare team are experts in their field. However, that does not necessarily mean they are always expert communicators.

• They treat a variety of people, all with different levels of knowledge and understanding, and at times they may use medical jargon that you do not understand.

• It is important that you come away from your consultation with a clear picture of what has been agreed. Therefore, do not be scared to ask your consultant or nurse to repeat or re-word what they have told you, as many times as necessary, in order for you to understand.

• Remember, it can sometimes be helpful to take a friend or relative with you so that they can make notes or help you recall what was said.

RAise it!

Be honest. When the consultant asks you “How are you?” don’t say “I’m fine” if you’re not! You only get to see them every few months and it’s important they know exactly how you’re getting on.

Karen Mooney, Patient

““


You are unsure about the importance or meaning of your DAS28 score or how often your DAS28 score should be assessed

Ask questions

• National guidelines (NICE) advise that a DAS28 assessment should be carried out at least twice a year to monitor the progress of your disease but you should expect to have your DAS28 monitored at every consultation unless otherwise agreed with your rheumatologist or nurse.

• It is important for you to work with your team to ensure you understand your disease and how well it is being controlled.

• The goal of treatment is to achieve the best disease state (lowest DAS28) possible for you and to aim for remission if appropriate. Your team will want this just as much as you, so if in doubt, RAise it!

Unsure what your condition, treatment or DAS28 score means? RAise it!

26 27

You may be more concerned about other things in your life such as “how is this disease going to affect my job or my relationship with my partner?” and be reluctant to voice these concerns while your doctor or nurse is talking to you about your medication. 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 your life as you want to.

• Therefore, asking questions about how RA is going to affect your family life, ability to work etc. is important and entirely relevant in a consultation.

• If time is limited with your rheumatologist, you should raise these issues with your nurse who is responsible for your overall welfare and for working with other healthcare professionals who can provide you with the specialist support you may need. In order to get the most out of your consultations it may be helpful for you to put together 3-5 questions, before you go for your appointment, to ask your healthcare professional.

• Be realistic about the time you have with your rheumatologist and nurse. Prioritise your questions to ensure that you discuss the topics of greatest concern.

RAise it!

When I have a swollen joint I will measure the joint each day and log it in my diary up until my appointment date and then show the rheumatologist so we can see if the swelling is increasing or decreasing. We then decide what action to take.

Yiota Orphanides, Patient

““Summary box

• Keep a diary

• Find the right words

• Be honest

• Ask questions

• Talk to the right people

• Don’t be afraid to ask


You do not feel that you know your healthcare team well enough, or perhaps you do not believe they are interested in you as a person or how you feel. You find it difficult to talk about intimate and personal details related to the disease and how it is affecting your life and relationships

Talk to the right people

• The healthcare professionals are there specifically to provide you with both physical and emotional support.

• Often it can be easier to talk to your nurse about intimate or personal details than your rheumatologist, and they can pass on any information that is relevant to your care.

• Rheumatology nurse specialists are specifically trained in RA and will be aware of many of the common difficulties, no matter how intimate.

• It may be easier to talk over the phone to your nurse or rheumatologist if you feel anxious or embarrassed about an issue.

• You may find it helpful to call NRAS who can arrange for someone else with RA just like you to call you on the phone. Talking to someone who has been there and done that can really help.

Worried you might have silly questions to ask your rheumatologist or nurse? Don’t be… RAise it!

28 29

Glossary of useful terms

EErythrocyte Sedimentation Rate (ESR) – an inflammatory marker which is routinely measured in blood tests

FFatigue – extreme mental or physical tiredness

Flare-up – a period in which the symptoms of a disease reappear or worsen

HHealth Assessment Questionnaire (HAQ) – a questionnaire that asks whether you are able to carry out normal daily tasks around the home such as bathing, getting in and out of a chair and shopping

IImmune system – a network of cells, tissues and organs that work together to defend the body against attacks by foreign invaders e.g. tiny organisms such as bacteria, parasites and fungi that can cause infections

JJoint damage – caused by the erosive damage that RA can do to the bones and cartilage, affecting the movement of joints and how well they can function

MMulti-disciplinary team – a group of health care and social care professionals who provide different services for patients in a co-ordinated way

Musculoskeletal system – the system of muscles, tendons, ligaments, bones, joints and associated tissues that move the body and maintain its form

NNon-steroidal anti-inflammatory drugs (NSAIDs) – used to reduce inflammation in RA e.g. ibuprofen

PPrimary care – the first point of contact a person has with the health care system e.g. GPs or practice nurses

Progressive – a condition, such as RA, that can get worse over time

RRemission – the disappearance of the signs and symptoms of a disease

Rheumatoid factor (RF) – an antibody produced by the body’s immune system which can indicate the presence of RA. Some people with RA can have a negative rheumatoid factor

Rheumatoid nodules – firm, flesh-coloured lumps that grow under the skin close to the affected joints

SSecondary care – the second stage of the healthcare system, where a patient is referred by their GP for specialist treatment and care

AActive disease – a condition which is developing and not currently under control

Anaemia – a condition which causes a decrease in the number of red blood cells leading to tiredness, weakness and shortness of breath

Analgesics – drugs used to control pain e.g. paracetamol

Anti-cyclic citrullinated peptide (aCCP) – a type of antibody found in some patients with RA (identified through a blood test) which can be used to indicate the presence of RA and which treatments may produce the best results

Antibodies – found in blood or other bodily fluids and used by the immune system to identify and neutralise foreign objects, such as bacteria and viruses

Auto-immune disease – a disease in which the body’s immune system causes illness by mistakenly attacking healthy cells, organs, or tissues in the body

BBiologics – newer type of RA treatment. They work by targeting specific chemical messengers or cells that activate inflammation in the body

Biomarkers – are biologic molecules that are useful in measuring the presence or progression of a disease, or the effects of a particular treatment. Anti-cyclic citrullinated peptide (aCCP) and rheumatoid factor (RF) are biomarkers for RA

CCare plan – a plan developed between a patient and a healthcare professional that sets out the care and treatment of a patient

Chronic – an illness marked by long duration or frequent recurrence

Consultation – a meeting between a healthcare professional and patient to discuss individual needs and treatments

Controlled disease – a condition which is stable or under control as a result of treatment

Corticosteroids – steroids used to reduce inflammation in RA

C-reactive protein (CRP) – an inflammatory marker which is routinely measured in blood tests. It is thought to be more sensitive than the ESR, although it is not specific to RA

DDisease Activity Score (DAS) – a score used to assess the level of disease activity in people with RA and guide treatment decisions. It is calculated through an examination of joints, a consultation with the patient regarding their current level of pain and a blood test

Disease modifying anti-rheumatic drugs (DMARDs) – drugs used to reduce joint inflammation and damage by ‘damping down’ the immune system in different ways

30 31

Sources of further information


National health services/guidance

Department of Health

The government department responsible for public health issues

Tel: 020 7210 4850

Website: www.gov.uk/government/organisations/department-of-health

Department of Work and Pensions Government

The department responsible for welfare and employment issues

Website: www.gov.uk/government/organisations/department-for-work-pensions

National Institute for Health and Care Excellence (NICE)

An independent organisation responsible for reviewing and providing national guidance on all new treatments with regard to their clinical and cost effectiveness within England, Wales and Northern Ireland

Website: www.nice.org.uk

Patient Advice and Liaison Services (PALS)

PALS ensures that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible. Search for ‘Patient Advice and Liaison Service’ online to find the nearest service to you:

Website: www.pals.nhs.uk

Scottish Medicines Consortium (SMC)

An independent organisation responsible for reviewing and providing guidance on all new treatments with regard to their clinical and cost effectiveness within Scotland

Website: www.scottishmedicines.org.uk/Home

General support & information

Citizens Advice Bureau

Offers help for people needing to resolve their legal and financial problems by providing free, independent and confidential advice

Website: www.citizensadvice.org.uk

NHS Direct

A national health line providing expert health advice, information and reassurance

NHS Direct tel: 111, available 24 hours a day

Website: www.nhs.direct.nhs.uk

NHS24 in Scotland tel: 08454 242424, available 24 hours a day

Website: www.nhs24.com

The National Rheumatoid Arthritis Society (NRAS)

NRAS provides support and information for people with RA, their families, friends and carers

Tel (Freephone): 0800 298 7650, available: 9.30 - 16.30, Mon - Fri

Email: [email protected]

Website: www.nras.org.uk

Seropositive/seronegative – serostatus is a term used to refer to the presence or absence of specific substances in the blood e.g. antibodies such as aCCP or RF, and can indicate whether a person is likely to have an enhanced response to certain treatments

Sharp Score – an x-ray measurement of changes in joint damage

Symmetrical disease – a condition that causes similar symptoms in both the left and right sides of the body e.g. in both hands or both feet

Symptoms – changes in the body that may indicate signs of disease activity

Synovial fluid – a small amount of slippery fluid that lubricates all moveable joints in the body. When the joint is inflamed there may be a build-up of synovial fluid in the joint causing stiffness and pain

Systemic disease – a disease that can affect a number of organs in the body

TTissue – a term that is applied to a group of cells that perform a specific function. There are different types of tissue, for example synovial tissues line all moveable joints

Treatment – a type of care for an illness or an injury that can involve the use of medicine

UUltrasound – is a type of scan that can be used at any stage to detect inflammation which may not be visible on clinical examination, as well as damage/erosion

VVisual Analogue Score (VAS) – This is a horizontal line, usually 10cm in length, on which a patient marks the point that represents the level of pain they are experiencing

XX-ray – used to detect disease or injury to the bones and joints. In RA they can be used to detect joint damage and erosion

32 33

Pain management

The British Pain Society

Provide information about pain clinics

Tel: 020 7269 7840


Website: www.britishpainsociety.org

Pain Concern

Offers information and a helpline

Tel: 0300 123 0789, available 10.00 - 16.00, Mon - Fri


Website: www.painconcern.org.uk

Rights & discrimination

Equality Advisory Support Service

This helpline aims to offer bespoke advice to those facing discrimination

Tel: 0808 800 0082

Text: 0808 800 0084, Lines open 09.00 - 20.00, Mon - Fri and 10.00 - 14.00, Sat

Complementary therapies

Institute for Complementary and Natural Medicine

Can help you find qualified practitioners locally

Tel: 020 7922 7980


Website: www.icnm.org.uk

Other

Yellow Card Scheme

Anybody who suspects that they may have suffered a side effect from a medicine can report it to the Medicines and Healthcare products Regulatory Agency (MHRA), who collate and analyse reports to make the medicine safe for everyone

Tel: 0808 100 3352, available: 10.00 - 14.00, Mon - Fri


Website: www.yellowcard.mhra.gov.uk

All contact details correct at time of going to print

Disability support

Disability Rights UK

A national, registered charity which works to achieve independent living for disabled people, relieving poverty and put disability equality and human rights into practice. There are several helplines available which include one for disabled students and another which offers independent living advice

Tel: 020 7250 3222

Fax: 020 7247 8765


Website: www.disabilityrightsuk.org

Disabled Living Foundation

DLF is a national charity providing impartial advice, information and training on independent living since 1969

Tel: 0300 999 0004, available 10.00 - 16.00, Mon - Fri


Website: www.dlf.org.uk

DIAL UK

DIAL is an independent network of local disability information and advice services run by and for disabled people. Every year, DIALs help over a quarter of a million disabled people. Scope provides support to the network

Tel: 01302 310123


Website: www.scope.org.uk/dial

Motability

Provides cars and powered wheelchairs through the Motability scheme

Tel: 08454 564566

Website: www.motability.co.uk

Ricability

Consumer guides on products and services for disabled people

Tel: 020 7427 2460


Website: www.rica.org.uk

The Forum of Mobility Centres

A network of 17 independent organisations covering the UK and Northern Ireland, who offer professional, high quality information, advice and assessment to individuals who have a medical condition or are recovering from an accident or injury which may affect their ability to drive or get in and out of a car

Tel: 0800 559 3636, available: 09.00 - 17.00, Mon-Fri


Website: www.mobility-centres.org.uk


34 35

DiARyPlease use the following pages in the diary to indicate your levels of fatigue, pain and stiffness and how you are feeling based on your treatment and side-effects you may be experiencing.

you can also make a note of your treatment, any questions that you want to ask your healthcare professional team and record any goals that you set.

1 National Rheumatoid Arthritis Society. What is RA? Professor Gabriel Panayi http://www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/what_is_ra.aspx?mode=print [accessed May 2013]

2 Tedeschi SK et al. Sexual disparities in the incidence and course of SLE and RA.Clin Immunol. 2013 Mar 16. pii: S1521-6616(13)00065-X. doi: 10.1016/j.clim.2013.03.003. [Epub ahead of print]

3 NHS. Rheumatoid arthritis http://www.nhs.uk/conditions/Rheumatoid-arthritis/Pages/Introduction.aspx [accessed June 2013]

4 NHS. Rheumatoid arthritis - Treatment http://www.nhs.uk/Conditions/Rheumatoid-arthritis/Pages/Treatment.aspx [accessed June 2013]

5 National Institute for Health and Care Excellence. Golimumab for the treatment of rheumatoid arthritis after the failure of previous disease-modifying anti-rheumatic drugs http://www.nice.org.uk/nicemedia/live/13490/54929/54929.pdf [accessed June 2013]

6 Choy E. Inhibiting interleukin-6 in rheumatoid arthritis. Curr Rheumatol Rep. 2008;10:413-417

7 RoActemra (tocilizumab) Summary of Product Characteristics. Roche Products Ltd. December 2012

8 National Institute for Health and Care Excellence. Abatacept for treating rheumatoid arthritis after the failure of conventional disease-modifying anti-rheumatic drugs (rapid review of technology appraisal guidance 234) http://www.nice.org.uk/nicemedia/live/14155/63676/63676.pdf [accessed June 2013]

9 Roche data on file. April 2013

10 National Institute for Health and Clinical Excellence. CG79 Rheumatoid arthritis: the management of rheumatoid arthritis in adults. February 2009. http://guidance.nice.org.uk/CG79 [accessed May 2013]

References

36 37

Please indicate how you are feeling, and thoughts on response to treatment and side effects each day, using a scale of 1-4.

Diary

1 - Excellent 2 - Good 3 - Fair 4 - Poor MONTH

Treatment (please note below any treatments that you would like to monitor)

Side-effects (please note below any side effects that you would like to monitor)

1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy

How are you feeling?

Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

38 39


Diary




1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

40 41


Diary




1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

42 43


Diary




1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

44 45


Diary




1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

46 47


Diary




1 2 3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19 20 21 22

23 24 25 26 27 28 29 30 31

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

DAy


Fatigue

Pain

Stiffness

48 49

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

Treatment

Please note any other information of interest regarding your treatment(s). Example shown in italics

Date Treatment Dosage Administration schedule

Record details of all your medications that you are taking, dosage, any dosage changes and the schedule of when treatments are administered. Example shown in italics

6/8/2013 Methotrexate 15mg Inject Friday evenings at 7.30pm

Consultant’s name/contact details: ..........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Nurse’s name(s)/contact details: ...............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Physiotherapist’s name/contact details: ..................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

GP’s name/contact details: ........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Other name(s)/contact details: ..................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

NRAS Helpline 0800 2987650: .................................................................................

Remember to tell physiotherapist that my left hand is always painful for longer after the exercises.

50 51

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

Please note any other information of interest regarding your treatment(s).

Please note any other information of interest regarding your treatment(s).

Date Treatment Dosage Administration schedule

Record details of all your medications that you are taking, dosage, any dosage changes and the schedule of when treatments are administered.

52 53

Tracking Your RA

Record details of any goals set with your healthcare team. Example shown in italics

Date of visit Current DAS28 score Target DAS28 score for next Personal goal

e.g. drive to visit my cousin in Yorkshire; swim 4 laps of the pool;

54 55

Questions or concerns to be raised at your next appointment.

Questions

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

......................................................................................................................................

RAise it!

RAise it! is an update of the highly successful RAise it with your doctor booklet which was launched by the National Rheumatoid Arthritis Society (NRAS) in 2010. This booklet has been created specifically for people with rheumatoid arthritis (RA) and aims to provide information, insight and practical advice to help you understand and communicate the physical and emotional impact of your RA to healthcare professionals.

Throughout the booklet you will find hints, tips and advice from experts and those who have lived with RA for many years. These individuals want to share what they have 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 the ways we achieve this is by providing high quality health and social care information for people living with RA and their RA care team.

We hope that this booklet provides you with the confidence to discuss your RA with your healthcare team, starting from your very first consultation, right through to your regular check-ups with your rheumatologist, nurse and other members of the care team.

Other publications that you may find useful with regard to other aspects of your RA are shown below and are available from NRAS.

The development and printing of this booklet has been funded by Roche Products Limited and Chugai Pharma UK Ltd.

NRAS is a private company limited by guarantee. Registered in England and Wales No.7127101 Registered Charity Nos 1134859 SC039721

Original date: September 2013 Review date: August 2015 RCUKCOMM00157 – September 2013

biologicsTHE STORY SO FAR...

A Patient Guide to Biologic Therapies in the treatment of Rheumatoid Arthritis

Emotions, Relationships & Sexuality

The impact of rheumatoid arthritis on how we feel and relate to othersApril 2013

Emotions, Relationships & Sexuality

Tackling emotions,

relationships and sexuality, and

how these very personal and

intimate issues are affected by

being diagnosed with and living

with rheumatoid arthritis.

Blasted

Flare is

getting

worse !

Beyond Tiredness

Fatigue

The development and printing of this booklet was sponsored by Roche Products Ltd and Chugai Pharma UK Ltd.

Understanding rheumatoid arthritis

A patient guide to disease activity score (DAS)

Know yourNEW EDIT

ION

And stay one step ahead of your RA

The development and printing of this booklet was sponsored by Roche

Products Ltd, Chugai Pharma UK Ltd and created in collaboration with

the DAS Focus Group ofleading rheumatologists and NRAS

Contact us...General: 0845 458 3969Email: [email protected]

National Rheumatoid Arthritis SocietyUnit B4 Westacott Business CentreWestacott WayLittlewick GreenMaidenheadBerkshire SL6 3RT

Follow us...Join the NRAS Facebook pagewww.facebook.com/nationalrheumatoidarthritissociety& be part of the NRAS community

Follow us on TwitterTwitter@NRAS_UK

To see what is happening on Helpline follow themTwitter@helpline_NRAS

For up to date membership information followTwitter@members_NRAS

FREEPHONE HELPL iNE : 0800 298 7650 | WWW.NRAS.ORG.UK

Copyright © 2013 NRAS. Please visit the NRAS website for copyright statement.

RAise it! - NRAS - National Rheumatoid Arthritis Society It.pdf · of your life. However, NRAS has...

Documents

Transcript of RAise it! - NRAS - National Rheumatoid Arthritis Society It.pdf · of your life. However, NRAS has...