Diagnosed with juvenile
idiopathic arthritis (JIA)
and hypermobile joints
Diagnosed with slipped
capital femoral epiphysis
Diagnosed with Crohn’s disease
Diagnosed with fibromyalgia
JIA is a chronic, long-term condition
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
A global challenge9
350,000,000People worldwide have arthritis
10,000,000people in the UK are living with arthritis
8,750,000people have sought treatment for osteoarthritis
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
85,920initial hip replacements reported in 2013
4,000people in England have scleroderma
6,000,000+have chronic back pain in the
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
Musculoskeletal healthcare services and other factors
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
You wake up to the unknown most days
Varying pain (severity,
location, duration) Swelling, stiffness and
Sensitivity to changes in weather and to
noise, lights, touch and other stimuli
All of the
from tiredness to
Cognitive disturbances, including
a lack of concentration,
temporary memory impairment
and mixing up words
feels as though
the plug has
FINDING THE FACTSTo help make informed choices
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?
Using NICE guidelines for shared-decision making
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?
Biologics and biosimilars
https://www.youtube.com/watch?v=kNZdNI5rBzE (Published by NRAS)
Know your DAS
▸Joint examination + blood test + your report
•‘Capture your own
joint’ camera feature
•Summary of results
•Email results to
GETTING INVOLVEDOpportunities to get involved in research
relating to rheumatoid arthritis
Centre for Musculoskeletal Research User Group (RUG)
The University of Manchester Biomedical Research
Arthritis Research UK Patient Insight Partners
Patient Research Ambassadors
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.