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It’s more than just aches and pains

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This presentation was delivered to members of the NRAS Bolton Rheumatoid Arthritis Support Group (BRASG) at their monthly meeting held in Bolton, United Kingdom.

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It’s more than just aches and pains

  1. 1. IT’S MORE THAN JUST ACHES AND PAINS Simon Stones Patient Consultant and Doctoral Researcher in Child and Family Health Bolton NRAS Group Meeting – Tuesday 05 June 2018
  2. 2. You’re far too young to have arthritis! 3
  3. 3. 4 1996 Diagnosed with juvenile idiopathic arthritis (JIA) and hypermobile joints Diagnosed with slipped capital femoral epiphysis Diagnosed with Crohn’s disease 2008 2004 Diagnosed with fibromyalgia 2012
  4. 4. JIA is a chronic, long-term condition 5 Juvenile = onset at aged 16 years or under Idiopathic = of unknown etiology Arthritis = inflammation in one or more joints for a minimum of 6 weeks Approximately 1 in 1000 young people have JIA in the UK
  5. 5. 6 Systemic Psoriatic Enthesitis- related Oligoarticular Polyarticular RF+ Polyarticular RF- Undifferentiated
  6. 6. CAN YOU GUESS…The number of rheumatic and musculoskeletal conditions that exist? 7
  7. 7. 8 OVER 200
  8. 8. A global challenge9 350,000,000People worldwide have arthritis
  9. 9. 10,000,000people in the UK are living with arthritis 10
  10. 10. 8,750,000people have sought treatment for osteoarthritis 11 400,000adults have rheumatoid arthritis 286,000people consult their GP about gout each year 15,000children have juvenile idiopathic arthritis 25,000-50,000people have systemic lupus erythematosus 30,000people visit their GP every year because of ankylosing spondylitis 85,920initial hip replacements reported in 2013 4,000people in England have scleroderma
  11. 11. 12 6,000,000+have chronic back pain in the UK 3,000,000have osteoporosis in the UK 1.2 to 2.8 millionmay have fibromyalgia in the UK based on 2008 estimates that 2-4.5% of the UK population (61,414,062) have fibromyalgia
  12. 12. Musculoskeletal healthcare services and other factors 13 Over 100,000 GP consultations every day in the UK about a musculoskeletal problem Only 12% of people with musculoskeletal conditions say they have a care plan 58% of people aged 60 and over report having another long-term condition 68% of people with arthritis report depression when their pain is at its worst The CMO’s guidelines for physical activity advise that adults do at least 150 minutes of moderate intensity activity each week… In 2011/2012, only 36% of adults took part in sport of moderate intensity for 30 minutes at least once a week
  13. 13. You wake up to the unknown most days 14 Varying pain (severity, location, duration) Swelling, stiffness and difficult moving Sensitivity to changes in weather and to noise, lights, touch and other stimuli All of the ‘miscellaneous’ symptoms…! Fatigue, ranging from tiredness to complete exhaustion Cognitive disturbances, including a lack of concentration, temporary memory impairment and mixing up words “It sometimes feels as though the plug has been pulled!”
  14. 14. FINDING THE FACTSTo help make informed choices 15
  15. 15. Critical thinking of health claims ▸A lot of news is made up of health claims – some are fake, others are genuine ▸5% of all google searches are for health claims ▸So, how do you to tell the good from the bad, the truths form the untruths and the interventions you should do something about and those you should ignore? ▸Five strategies to use when assessing health claims: 1. What type of evidence is this? 2. Was this research conducted by trusted individuals? 3. Does this research apply to me? 4. How much are the results affected by bias? 5. What is the effect? 16
  16. 16. Using NICE guidelines for shared-decision making ▸https://www.nice.org.uk/guidance/cg79 17
  17. 17. Questions you might like to ask about your treatment… ▸Why is this particular type of treatment suitable for me? ▸What are the risks and benefits of this treatment? ▸Are there any other options? ▸What would happen if I chose not to have this treatment? ▸How long will I need to have this treatment? ▸Will this new treatment affect other medication I'm already taking? ▸Why am I being offered several medications at once? ▸What will happen if this treatment doesn't work? 18
  18. 18. 19
  19. 19. Biologics and biosimilars https://www.youtube.com/watch?v=kNZdNI5rBzE (Published by NRAS) 20
  20. 20. Know your DAS ▸Joint examination + blood test + your report 21 •DAS28 assessment calculator •Health diary •Video guide •‘Capture your own joint’ camera feature •Summary of results reporting tool •Email results to your HCP functionality •Further information on DAS28
  21. 21. Rheumabuddy 22 www.rheumabuddy.com
  22. 22. GETTING INVOLVEDOpportunities to get involved in research relating to rheumatoid arthritis 23
  23. 23. Centre for Musculoskeletal Research User Group (RUG) 24 Website: http://research.bmh.manchester.ac.uk/Musculoskeletal/rug/ Email: rug@manchester.ac.uk
  24. 24. The University of Manchester Biomedical Research Centre (BRC) 25 Website: https://www.manchesterbrc.nihr.ac.uk/public-and-patients/patient-public-involvement- engagement/ Email: publicprogrammes@mft.nhs.uk
  25. 25. Arthritis Research UK Patient Insight Partners 26 Website: https://www.arthritisresearchuk.org/research/involving-people-with-arthritis/our- patient-insight-partners/patient-insight-partner-group.aspx Email: patientinsight@arthritisresearchuk.org
  26. 26. Citizen Scientist 27 Website: http://www.citizenscientist.org.uk Email: info@citizenscientist.org.uk
  27. 27. Patient Research Ambassadors 28 A Patient Research Ambassador is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and is willing to communicate that to other patients, the public, as well as other healthcare professionals. If you would like to speak to someone in your area about how to become a Patient Research Ambassador you can view a list of local contact details. Greater Manchester Janet Eastwood janet.eastwood@nihr.ac.uk
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  29. 29. 30 TIME FOR QUESTIONS! Thanks for your time today. Find me on social media @SimonRStones or email simon@simonstones.com

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