systemic lupus erythematosus (sle or lupus) care plan 15 2467.pdf9 systemic lupus erythematosus...

My Individual Personal Care PlanSystemic Lupus Erythematosus (SLE or Lupus)

RheumatologyDepartment

Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan

Name:

Date of Birth:

Hospital No.:

NHS No.:

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

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

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

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

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

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.

Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 2

Health Care Team: Contact No.:

GP

Consultant Rheumatologist

Rheumatology Clinical Nurse Specialist

Physiotherapist

Occupational Therapist

Community Nurse

Rheumatology Appointments

Dentist

Other:


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4Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan

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 investigation requested from previous appointment are completed, 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.


Date: / /

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

Treatment:

Referral:

Outcomes and Advice:

Investigations:

Follow up:


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MedicationsPeople with Lupus are likely to take several prescription and over the counter medications, and the more drugs you take for the more 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 healthcare team when you go to doctor visits and getprescriptions filled. Include the name of each medicationyou are taking, along with the dosage information and the reason you are taking it.Give a copy of your medication to your next of kin. Lookto see if the “Message in a bottle” scheme can help you.

• Maintain a prescription medication file. After you readthe written material that accompanies your prescriptionmedication, file it in a place where you can find it easilyshould you ever have questions about dosage or sideeffects.

• Use one pharmacy. If possible, have all of your medicationsfilled at the same pharmacy, so that your pharmacist can track them all and alert you to possible druginteractions.

• 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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Living Well day to day with Lupus

Living well day to day with Lupus can be achieved by

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

• Learning about your health professionals, therecommended medications, and what they can do for you.

• Find out what can improve your health, such as loosing 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 thinks worse. Some people can writewithout pain while others can’t and the same goes for walking, aerobics, etc.

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

Take an active role in managing your Lupus

• Gather information about Lupus 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 skillsand incorporate these goals into your life.

• Follow through with your self management plan on a day to day basis.


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Exercise is beneficial for people with LupusJust about everyone realises exercise is beneficial even if they don’t participate in regular exercise. Some people fear that exercise will cause Lupus 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 Lupus 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.

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

with disease complete their exercise routine this way).• Add aerobic exercise.• 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 Lupus 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.


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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Serious complications of Lupus are relatively rare, but regular check ups are recommended, so any problems can be identified and treated at an early stage. Serious complications may include:-

Internal Organ involvement Comments

Report any signs of shortness of breath, chest or abdominal pain, weight loss, sudden weakness, blood in the urine, unexplained fevers and change in mental function.

Any unusual symptoms should be reported to a healthcare professional.

Overlap Syndromes Comments

Some patients have symptoms of other auto-immune diseases, such as Myositis, Rheumatoid Arthritis, Sjogrens, Scleroderma, etc.

Any unusual symptoms should be reported to a healthcare professional.

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

Anti-Phospholipid Syndrome Comments

‘Sticky blood syndrome’ can be present alongside Lupus and can cause an increased risk of blood clots, difficulties with pregnancy and miscarriage.


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Support Groups:

Lupus UKLUPUS UKSt James HouseEastern RoadRomfordEssex RM1 3NHEngland

Phone: (00 44) (0)1708 731251 (Monday – Friday09.00- 17.00)

Email:[email protected]

St Thomas Lupus TrustGround Floor, Conybeare House, Great Maze Pond, Guys Hospital, London SE1 9RTTel: 020 7188 3562 [email protected]

Produced by: Rheumatology DepartmentDate: June 2015 Review: June 2017Ref: J IMedical Illustration ref: 15/2467© Portsmouth Hospitals NHS Trust 2015


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