Transcript Peter Spencer - Action for M.E.

Peter Spencer
Chief Executive – Action for M.E.
www.actionforme.org.uk
Employer Workshop 27 September 2011
Who are we?
• UK’s leading charity working to improve the
lives of people with M.E.
Action for M.E.’s mission
To transform the lives of people with M.E. For
the better whilst working towards ultimately
overcoming M.E.
Three Main Areas of Activity
Campaign to educate and achieve change
Empower and support people with M.E.
Promote and fund Scientific Research with
biomedical research as the highest priority
What is M.E.?
• Complex illness classified by the WHO as a neurological
condition.
• Heterogeneous. Symptoms include:• Extreme exhaustion
• Muscular skeletal pain
• Flu like symptoms
• Memory and concentration problems
• Headaches
• Chaotic sleep
• Etc
• and the condition fluctuates over time
Impact of M.E./CFS
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•
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•
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Medical Symptoms
Employment
Finance
Friendships
Family relationships
Mobility
Isolation
In short – it wrecks lives without actually killing
people
What is the Prevalence?
• Depends on criteria you use for diagnosis
• General figure of 0.2 – 0.4 % of population gives around
250,000 in UK
• The secondary care clinics use wider diagnostic criteria that
apply to some 2% of population - well over 1 Million
• Many of your employees are affected but it is often not
reported because of the stigma and scepticism surrounding
this condition.
• Early recognition and intervention by health professionals
and the employer is beneficial for both the organisation
and the employee.
I
Issues for Employers
•
The Equality Act defines disability as: “a physical or mental impairment
that has a substantial and long-term adverse effect on the ability to carry
out normal day-to-day activities.”
•
M.E. complies with this definition and so many people with M.E. ‘qualify’
as disabled under the Act.
• Employers are obliged to make ‘reasonable adjustments’ for a disabled
employee or potential employee
• So what are the reasonable adjustments that are appropriate here? And
are they any different to those for other neurological conditions?
• How can we best share exemplary practice and showcase it?
How many people with M.E. are in paid employment?
Percentage of
respondents
100%
80%
60%
40%
20%
0%
Yes
No
Response
Percentage of
respondents
Would people with M.E. like to be in paid employment
80%
70%
60%
50%
40%
30%
20%
10%
0%
Yes
No
Response
Aims of this workshop
• Raise awareness and increase understanding
of M.E. in the workplace
• Identify tools/measures to further promote
good practice
• Build relationships for possible joint working
Over to Trish Caverley
Percentage of respondents
Changes in type of work undertaken after onset of M.E.
40%
30%
20%
Before M.E.
Now
10%
0%
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ag
an
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Naturew of work
Percentage of
respondents
What work-place adjustments have people with M.E. currently in
work arranged with their employer
50%
40%
30%
20%
10%
0%
N
k
or
W
o
e
m
ho
C
ts
en
m
st
ju
ad
m
fro
g
in
nd
ta
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ur
ho
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m
or
ff
of
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er
nd
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Ti
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Adjustment
What work-place adjustments do people with M.E.
think would help
Percentage of
respondents
80%
60%
40%
20%
0%
Flexible hours
Wrork from
home
Frequent
breaks
Adjustment
Quiet place to Understanding
rest
colleagues
Aims of the workshop
• Raise awareness and increase understanding
of M.E. in the workplace
• Identify tools/measures to further promote
good practice
• Build relationships for possible joint working
An Invitation
Please work with us by :• Supporting further “M.E and work” initiatives
• Displaying M.E. awareness posters
• Sharing good practice via Action for M.E.’s
website and/or publications
• Joining a virtual advisory group to promote good
practice in supporting PwME in the workplace
• etc
Thank You
•
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Allen and Overy LLP
Andy Noad
Bill Gunnyeon – DWP Chief Medical Adviser
Sue Pemberton – Leeds and W Yorks CFS/M.E.
Service
You all for contributing
Trish Caverly – facilitator
Sara – for making the arrangements
Heather for producing the Employer’s Guide to
M.E. and for proposing the workshop