Fibromyalgia Association UK

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Transcript Fibromyalgia Association UK

FIBROMYALGIA IN THE UK
Fibromyalgia Association UK
Fighting for Freedom from Fibromyalgia
www.fmauk.org
Fibromyalgia Association UK aims to:
• increase awareness of FM
• lobby for speedy diagnosis
• lobby for effective treatment
Fighting for freedom from fibromyalgia
www.fmauk.org
Fibromyalgia in the UK
Patient survey involving over 500 people diagnosed with FM
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time with symptoms,
diagnosis,
treatment,
co morbidities
satisfaction with treatment,
effect on quality of life
Fighting for freedom from fibromyalgia
www.fmauk.org
Number of patients
Pain management
20
18
16
14
12
10
8
6
4
2
0
Fighting for freedom from fibromyalgia
www.fmauk.org
Treatments prescribed
90
80
70
60
50
40
30
20
10
0
Fighting for freedom from fibromyalgia
% of 578
www.fmauk.org
Therapies tried
70
60
50
40
30
20
% of 460
10
0
Fighting for freedom from fibromyalgia
www.fmauk.org
Medication results
80
70
60
50
40
30
20
benefit
no benefit
adverse reaction
10
0
Fighting for freedom from fibromyalgia
www.fmauk.org
Non drug results
80
70
60
50
40
30
20
10
benefit
no benefit
adverse reaction
0
Fighting for freedom from fibromyalgia
www.fmauk.org
overall treatment
excellent
good
poor
satisfactory
Fighting for freedom from fibromyalgia
www.fmauk.org
Conclusions
• Fibromyalgia is not effectively
treated in the UK
• No one treatment is effective for
everyone
Fighting for freedom from fibromyalgia
www.fmauk.org
What is the next step?
NICE has timetabled 2016 to consider whether
fibromyalgia should be considered for
action. Without data to show the extent of the
problem, how can an accurate decision be
made? Information needs to be collected now to be
ready for 2016, so that meaningful decisions and
progress can be made on producing guidelines so
that patients can benefit from a consistent service.
Fighting for freedom from fibromyalgia
www.fmauk.org
Our ask of MPs
• Request that data is collected of the number
of people diagnosed with fibromyalgia
• Request that NHS centres/commissioning
boards are surveyed to show how many offer
a multi-disciplinary approach to treating
fibromyalgia
Fighting for freedom from fibromyalgia
www.fmauk.org
Fibromyalgia Association UK
www.fmauk.org