Transcript Document

Hear ME, Influence M.E.
In Scotland
Sonya Chowdhury
Chief Executive
Our strategic touchstones
Where?
10%
2%
84%
4%
Who?
Gender
Women
Length of illness
Men
< 4 years
5 - 9 years
> 10 years
12%
18%
20%
68%
82%
Severity of illness
60
Mild - 36%
40
Medium - 42%
20
Severe - 22%
0
Severity
Impact
• 87% stopped or reduced paid work
• 29% stopped or reduced education
• 92% stopped or reduced social contact
• 22% affected decision to have children
• 51% reduced capacity to drive
• 26% no longer able to leave home independently
“I was an infant school teacher and kept going as long as I could, then had to
give in….I have moments when I grieve for the life I had before M.E….”
Healthcare contact
31% not seen GP in past year
73% not attended specialist ME-CFS clinic
Monitor condition
Review medication
New/changing symptoms
Setback/relapse support
Assistance with benefits
“I could have
paid off my
mortgage with
the money I
have spent on
treatments….I
feel so alone in
managing this
illness.”
How can we work towards personalised healthcare that
takes into account the specific needs & complex symptom
presentation of people with ME-CFS?
Health care
74% want better informed GP
“First I need a
doctor to
to self management group believe I am
physically ill…I
am so tired of
Open-minded, holistic approach
having spent 25
Physical symptoms PLUS
years in the
Emotional impact
wilderness…”
Knowledge & experience
Listen & be collaborative
31% want more say in their treatment
12% referred
How can appropriate information about self-management be
shared with people with ME-CFS to give them the best
chance of recovery in the long term?
Integrated care
49% integrated care = real difference
81% no social care assessment last 5 years
Improved outcomes
Needs assessment
Support provided when needed
Aids & adaptations
Personal budgets
“I was given a
social worker
just as the
social care cuts
were made. It
took a year for
them to tell me
that there was
no money for
people like me”
What steps can be taken to improve access to joined-up
health and social care for people with ME-CFS, in order to give
them the support they need to manage their symptoms?
Welfare, employment & education
77% welfare benefit reform worries
60% in receipt of ESA/DLA
27% GP unhelpful with evidence provision
Timely & personalised support
Economic outcomes
Emotional impact
Fluctuating nature recognised
Evidence provided when needed
“It’s a constant
worry at the
back of my
mind & when a
letter comes
through the
door my
stomach turns.”
How can people with ME-CFS be supported to access the welfare
benefits they are entitled to? For those that are improved enough
to consider a return to work, how can support and information
specific to the particular needs of those with ME-CFS be shared with
them, their colleagues & employers?
Carers
84% family member carers
84% no social care assessment for carer
Improved outcomes
Support & finances
Statutory Guidance to…
accompany Social Care…
(Self-directed Support) Act 2013
“My primary
carer is my
mother& caring
for me has
devastated her.
She is
exhausted from
the daily grind
of her only
adult child
suffer so much”
How can access to information about carers rights &
entitlements be improved, and how can GPs and other
healthcare professionals be supported to recognise &
signpost carers to appropriate sources of help & support?
Severe ME-CFS
24% not seen GP in last year
“I am mostly
bedridden and
60% no social care assessment in 5 years get out perhaps
once a month,
frequently
“a very individualised approach, less…I cannot
with care being delivered in the have a
patient’s own home as much as telephone
possible.”
conversation as
SGPS on ME-CFS 2010 I am too weak.”
Severe ME-CFS is a complex condition. How might targeted
support and care be provided to this patient group?
Hear ME, Influence M.E.
• Open meetings:
- Collectively identify issues & inequalities
- Solutions
- Collaboration
• Accessibility – contribute remotely
• Inform & influence
• Support individuals, groups & communities
Working Together
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Listen and Respect others views
Give everyone time
Hand up if you don’t understand or to ask question
No such thing as a silly question
Only share what you’re comfortable with
Keep confidentiality
Enjoy yourself
More Information
M.E. Time to Deliver: initial findings report
www.actionforme.org.uk/timetodeliver
Online forum
www.actionforme.org.uk/scottishhubforum
Contact me
[email protected]
Follow us on
www.facebook.com/actionforme
www.twitter.com/actionforme