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My Individual Personal Care Plan

Sjögren’s

RheumatologyDepartment

Sjögren Individual Personalised Care Plan

Name:

Date of Birth:

Hospital No.:

NHS No.:

Proud to make a differenceSjögren’s syndrome is a varied and variable condition. People are affected to different degrees and even in the same individual, symptoms will vary and change over time. Learning more about Sjögren’s syndrome will help you understand the condition, know what symptoms can be helped, what treatments are available and generally empower you to minimise the impact of the condition on your quality of life. By becoming actively involved in the day-to-day management of your health, you stand a better chance of maintaining all the activities you enjoy. Knowing what you will physically be able to do tomorrow, next year and beyond, starts with learning what Sjögren’s is and what is happening inside your body. The next step is learning what you can do and what your limits are. The third step is forming and following a self-management plan for your life.

Individual Personal Care Plan There are no rules around care plans, use them in whatever way is most useful to you. As a general guide:-1. The personal profile is the first part to complete this gives you the advantage of only having to complete your general information once, regardless of how many care plans or long term conditions you have.2. Identify, and complete, the plan/s relevant to you; work with your health care professional to complete the relevant sections, and understand the information contained within the plan. 3. Continually update your plan, and take it with you to any health appointments that you may have.

RememberCare planning isn’t just about filling in the form; it’s much more than that and should help you to be actively involved in managing your own condition and influencing the care that you may receive.

Sjögren Individual Personalised Care Plan 2

Health Care Team: Contact No.:

GP

Consultant Rheumatologist

Rheumatology Clinical Nurse Specialist

Physiotherapist

Occupational Therapist

Community Matron

Rheumatology Appointments

District Nurse

Other:

Other:

Primary Diagnosis:

Other Health Conditions:


Proud to make a difference:


Living well day to day with Sjögren’s can be achieved by:

• Learning about your body and what may be happening to it.

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

• Find out what can improve your health, such as losing weight or starting a flexibility exercise program.

Learn how to cope with chronic pain, fatigue, and stiffness:

• Experiment and learn what can help you feel better and what makes things worse. Some people can write without pain while others cannot. This also can apply to walking, aerobics, etc.

• Learn basic skills, such as ways to use your body that protect stiff areas, that will help you continue activities.

Take an active role in managing your Sjögren’s:

• Gather information about Sjögren’s and the steps you can take to stay active.

• Work with your team of health professionals, friends, and family to set up a self-management plan.

• Set goals to practice your coping and strengthening skills and incorporate these goals into your life. Follow through with your self-management plan on a day-to-day basis.


Preparing for your outpatient appointmentsList of medication - remember to take a full list of your:- Prescription Medication Over the Counter regular medication e.g.

paracetamol etc. Herbal or complementary medication e.g. devils claw etc.Know your allergies Have a list of your known allergies

Urine sampleA dip stick test is often used to monitor protein leakage and identify and assess urinary tract infections (UTIs). Most people with kidney problems will have an abnormal urinalysis. Protein, urine casts (especially red blood cell casts), red blood cells, or white blood cells in the urine may indicate kidney problems or bladder infection – collect the urine sample 1-2 hours prior to your appointment.QuestionsTime with your Consultant, Doctor or Health Care Professional is often limited to 10 to 20 minutes. Ensure that you have a list of important questions you want to know the answer to.Blood TestsEnsure that any blood tests are taken 5-7 days before your clinic appointment. If you live out of the area- ask your GP Practice for a copy of the blood tests results and bring them with you to the appointment.Other tests and Investigations - ensure that all tests and investigations requested from previous appointments are completed, let your Rheumatology department know well in advance if these have not been undertaken.New health problemsPrepare a list of any new health problems that have occurred since your last appointment remember your clinical notes may not have all your up to date medical records, clinical letters etc.

Preparing for your outpatient appointments:


Please complete prior to consultation:

Date: / /

Visual Analogue Scales (VAS): Are a good way of monitoring your pain and fatigue levels. Please rate your pain and fatigue in the last week.

Patient comments, goals, questions and report impact on life:

8 9 1076543210

No fatigue Severe fatigue

Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:


Date: / /

Seen by: (circle) GP/ Consultant/ SpR/ Specialist Nurse/ Physio/ OT/ Podiatrist

Treatment:

Referral:

Outcomes and Advice:

Investigations:

Follow up:



Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:


Date: / /


Treatment:

Referral:


Investigations:

Follow up:



Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:


Date: / /


Treatment:

Referral:


Investigations:

Follow up:



Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:


Date: / /


Treatment:

Referral:


Investigations:

Follow up:

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Serious complications of Sjögren’s are rare. Awareness of potential problems ishelpful so that they are recognised and identified at an early stage. Serious complications may include:-

Associated complications of Sjögren’s. Comments

Some people with Sjögren’s Syndrome may develop complications such as Vasculitis, diseases of the chest, diseases of the kidneys, abdominal complications, problems related to the nervous system and thyroid problems.

Any unusual symptoms should be discussed with a healthcare professional

Risk of Cancer Comments

Sjögren’s also increases the risk of a cancer of the lymphatic system (such as Non-Hodgkin lymphoma). The incidence of lymphoma is increased in comparison to the general population but it remains rare and probably affects 1-2% of patients with Sjogren’s Syndrome.Monitor for any early signs such as enlarged lymph glands in your neck, armpits, groin or salivary glands that are persistently swollen.

All concerns should be reported to a healthcare professional. Attendance for regular cancer screening is recommended.


Serious complications of Sjögren’s are rare. Awareness of potential problems ishelpful so that they are recognised and identified at an early stage. Serious complications may include:-

Self Management

Overlap Sjögren’s Comments

Some patients have symptoms of other auto-immune diseases, such as Lupus, Rheumatoid Arthritis, Scleroderma, Raynaud’s and Fibromyalgia.

Any unusual symptoms should be reported to a healthcare professional

Pregnancy Comments

Patients with Sjogren’s during pregnancy may require close monitoring throughout pregnancy

Please discuss with your healthcare professional if you are pregnant or planning pregnancy


Problems Associated with Sjögren’s

Eye Problems Comments

Your eyes may be dry and feel sore, irritated or gritty. Medications are available to alleviate these symptoms

It is important to treat these symptoms as decreased fluid production in the eyes can lead to additional problems.

It is recommended that a regular eye examination at the Opticians is carried out.

Discuss any new symptoms with the Rheumatology Team.

Please inform the Optician that you have Sjogren’s and what medication you are taking for your Sjogren’s

Mouth and Throat Problems Comments

Your mouth may become dry and you may experience mouth ulcers which can sometimes cause a sticky feeling in the mouth or throat. Swallowing may be difficult and people find that their taste is altered. Medications are available to alleviate the symptoms of a dry mouth.

Discuss any new symptoms with the Rheumatology Team.

Occasionally a very dry mouth can lead to other problems such as fungal infections (e.g. thrush), an unpleasant taste in the mouth. The salivary glands may also become painful and/or swollen.

Discuss any new symptoms with the Dentist/ Healthcare professional.


Dental Problems Comments

People with Sjögren’s are at risk of developing dental cavities.

Regular brushing and flossing after eating meals and snacks is recommended. It is recommended that you visit the Dentist/ Hygienist regularly at least once every six months.

Systemic Features/Other problemsDryness – other parts of the body may also be drier than normalThe digestive passage, making it difficult to swallow food

See leaflet regarding swallowing difficulties and discuss symptoms with healthcare professional

The bowel causing changes in bowel habit.

Discuss symptoms with healthcare professional

The vagina, making sex uncomfortable. The skin which may also be itchy or unusually sensitive to strong sunlight.

Discuss symptoms with Healthcare professional

Regular daily use of moistures can help solve this. Some moistures have specific ingredients in to help combat the itch.

Discuss with your GP or Rheumatology Team for Advice

The air passages, making you more sensitive to irritants such as smoke or dust which may affect your voice.

Discuss symptoms with Healthcare professional


Systemic Features/Other problems

Sjögren’s and Surgery Comments

Sjögren’s syndrome may increase the risk of complications with a general anaesthetic. Some medications used during surgery can dry the airways leading to an increased risk of mucous plugs in the airways

Please make your Anaesthetist aware of your diagnosis of Sjögren’s Syndrome.


Living Well with Sjögren

Heart disease: Cardiovascular risk Comments

Research has determined that inflammation associated with Sjögren’s increases the risk of Cardiovascular Disease and other cardiovascular events. It is therefore recommended that all patients look to lower Cardiovascular risk by treating inflammation and by paying attention to risk factors linked to heart disease:- Smoking Healthy Eating (Cholesterol) Blood Pressure Exercise Alcohol Intake Weight

Smoking Comments

Cigarette smoking may flare your Sjögren’s symptoms and any Raynaud’s symptoms you may have. There is also some evidence that cigarette smoking increases the likelihood of complications.

Further advice available from GP practices regarding stopping smoking

Healthy Eating Comments

It is well-recognised that a healthy diet is important for everyone. However the current research supports healthy eating.


Bone Health: Osteoporosis risk Comments

Some treatments such as steroid’s which can be used to help treat Sjogren’s can lower bone mineral density leading to fragile bones. This lower bone mineral density can develop into Osteoporosis meaning you are more susceptible to breaking a bone particularly of the spine, wrist and hip.

Eat a healthy diet including foods high in calciumReduce your alcohol intakeStop SmokingEnsure you remain active and include low impact weight bearing exercises in your weekly regime.


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Exercise is beneficial for people with Sjögren’sJust about everyone realises exercise is beneficial even if they don’t participate in regular exercise. Some people fear that exercise will cause Sjögren’s flares, as well as increasing joint pain and joint stiffness. The opposite is true. Properexercise helps decrease joint pain and stiffness.

Reasons Why Exercise Is Important

1) Strengthen the muscles that surround your joints 2) Maintain and improve bone strength3) Improve overall strength and energy 4) help you achieve good sleep5) Help with weight management 6) Improve your mood, confidence, and overall well-being7) Improve exercise tolerance8) Reduce the cardiovascular risk

Get Advice

• You should consult your Physiotherapist to decide what type of exercise would be most beneficial for you.

You can access physiotherapy through your RheumatologyDepartment or Health care provider.

• For example, range-of-motion exercises help you moveyour joints through their full range of motion. Strengthening exercises build muscles and Aerobic exercises build endurance.

• If regular exercise just isn’t your thing, become interestedin a physical activity that you will do. Consider activities like walking, bicycling, swimming, tai chi, and yoga, to name a few. Move beyond any fear you may have that exercise or regular physical activity will make your disease worse. What you really should fear is – INACTIVITY.


How Often Should People With Sjögren’s Exercise?

Range-of-motion exercises can be done daily and should be done at least every other day.Strengthening exercises should be done every other day unless you have severe pain or swelling in your joints.Endurance exercises should be done for 20 to 30 minutes three times a week unless you have severe pain or swelling in your joints. According to the American College of Rheumatology, 20 to 30 minute exercise routines can be performed in increments of 10 minutes over the course of a day.

Sjogren’s & Exercise: How To Get Started

• Discuss exercise plans with your Physiotherapist.• Start with supervision from a Physiotherapist and follow

the exercise plan 7 days a weeks for 20 to 30 minutes• Always stretch and warm up with range-of-motion

exercises.• Progress slowly.• Start strengthening exercises slowly with small weights

(a 1- or 2-pound weight can make a big difference).• Apply heat to sore joints (optional; many people

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

with this disease complete their exercise routine this way).• Add aerobic exercise.• Ease off if joints become painful, inflamed, or red, and

work with your Physiotherapists to find the cause andeliminate it.

• Choose the exercise program you enjoy most and makeit a habit. Consider appropriate recreational exercise

(after doing range-of-motion, strengthening, and aerobic exercise). Fewer injuries to joints affected by disease occurduring recreational exercise if it is preceded by range-of-motion, strengthening, and aerobic exercise that gets your body in the best condition possible.


How Much Exercise Is Too Much?

• Most experts agree that if exercise causes pain that lasts for more than 1 hour, it is too strenuous.

• People with Sjögren’s should work with their physical therapist or doctor to adjust their exercise program when they notice any of the following signs of strenuous exercise: unusual or persistent fatigue,increased weakness, decreased range of motion increased joint swelling, continuing pain (pain lasting more than 1 hour after exercising).

• It is appropriate to put joints gently through their full range of motion once a day, with periods of rest, during acute systemic flares or local joint flares.

• Patient can talk to their Physiotherapists about how much rest is best during general or joint flares.

Footwear and Exercise

• Ensure that you have the right footwear for the exercise activity. • Supportive trainers are typically best.• Make sure that footwear is not too tight.


Managing PainNot all people present with the same location, frequency, intensity or duration of pain. Some have mild on going pain, some have gradually increasing pain, others will have episodes of intense pain and then be relatively pain free for a period of time – everybody is different. It is not possible to predict who will experience what pain levels.

Self management actions to reduce or control your pain levels include:

• Taking your medication as prescribed (if applicable)• Keeping a good posture• Exercising regularly• Pacing your activities • Minimising stress levels• Have a dedicated time to practice relaxation

techniques each day.

Cool and Heat packs can prove effective. Caution when using cool and heat packs if experiencing Raynaud’s symptoms avoiding rapid temperature changes.It is essential to remember that not all pain is “harmful”. A level of discomfort as you exercise is expected but this will not be causing any physical harm if you are performing the right exercise in the right way and at the correct level.


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MedicationsPeople with Sjögren’s are likely to take several prescription and over the counter medications, and the more drugs you take for the conditions you develop, the greater the chance that you’ll experience side effects, medications interacting or the potential you mistakenly take the wrong drug or dose. You can help avoid these problems by getting organised and making sure your medical team and pharmacist know about all of the prescription drugs you’re taking.

Top Tips• Make a list. Keep an updated list of all your over-the-counter and prescription medications with you at all times so you can share it with each member of your health care team when you go to doctor visits and get prescriptions filled. Include the name of each medication you are taking, along with the dosage information and the reason you are taking it.Give a copy of your medication to your next of kinLook to see if the “Message in a bottle” scheme can help you.

• Maintain a prescription medication file. After you read the written material that accompanies your prescription medication, file it in a place where you can find it easily should you ever have questions about dosage or side effects.• Use one pharmacy. If possible, have all of your medications filled at the same pharmacy, so that your pharmacist can track them all and alert you to possible drug interactions.• Medication Review. Ask your Pharmacy for a yearly medication review.Do not over stock- only order repeat prescription. Message in a bottle: Available from Lions Clubs Headquarters on 0845 833 9502 or by e-mail [email protected]


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Patient Support Groups

When beginning to live with a disease such as Sjögren’s you and your family will have many questions. Some of which will be very specific to the disease itself whilst others will be related to just getting on with living with Sjögren’s.

You will find a wealth of information from BSSA, who also can direct you to the best possible answers to your questions. The Portsmouth Sjögren’s Local Support Group is also a good source of support for both practical and emotional advice.

Local support groups, and online chat forums, offer the opportunity to interact with a larger group and offers you a broader scope of understanding, especially since not all people with Sjögren’s have identical symptoms, undergo the same treatments, or cope the same way. We can learn from each other and from shared experiences.

The BSSA also produce a wealth of information booklets, information sheets and resources.


British Sjögren’s Syndrome AssociationPO Box 15040, Birmingham, B31 3DPPhone: 0121 478 0222 (Monday – Thursday 09.00- 14.00)

Email:www.bssa.uk.net

Portsmouth Sjögren’s Syndrome Support Group Contact Rheumatology Patient Advice and Information Line for more details: 023 9228 6935


Produced by: Rheumatology DepartmentDate: August 2015 Review: August 2017Ref: P WMedical Illustration ref: 15/1153© Portsmouth Hospitals NHS Trust 2015

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