Hear ME, Influence M.E. In Scotland Sonya Chowdhury Chief Executive.
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Transcript of Hear ME, Influence M.E. In Scotland Sonya Chowdhury Chief Executive.
Hear ME, Influence M.E.
In Scotland
Sonya ChowdhuryChief Executive
Our strategic touchstones
Where?
84%
4%
10%
2%
2,081
82%
18%
Gender
Women Men
Who?
12%
20%
68%
Length of illness
< 4 years 5 - 9 years > 10 years
Severity0
1020304050
Severity of illness
Mild - 36%Medium - 42% Severe - 22%
• 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….”
Impact
31% not seen GP in past year
73% not attended specialist ME-CFS clinic
Healthcare contact
Monitor conditionReview medicationNew/changing symptomsSetback/relapse supportAssistance with benefits
How can we work towards personalised healthcare that takes into account the specific needs & complex symptom
presentation of people with ME-CFS?
“I could have paid off my mortgage with the money I have spent on treatments….I feel so alone in managing this illness.”
74% want better informed GP
31% want more say in their treatment
12% referred to self management group
Health care
Open-minded, holistic approachPhysical symptoms PLUSEmotional impactKnowledge & experienceListen & be collaborative
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?
“First I need a doctor to believe I am physically ill…I am so tired of having spent 25 years in the wilderness…”
49% integrated care = real difference
81% no social care assessment last 5 years
Integrated care
Improved outcomesNeeds assessmentSupport provided when neededAids & adaptationsPersonal budgets
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?
“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”
77% welfare benefit reform worries
60% in receipt of ESA/DLA
27% GP unhelpful with evidence provision
Welfare, employment & education
Timely & personalised support Economic outcomesEmotional impactFluctuating nature recognisedEvidence provided when needed
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?
“It’s a constant worry at the back of my mind & when a letter comes through the door my stomach turns.”
84% family member carers
84% no social care assessment for carer
Carers
Improved outcomesSupport & financesStatutory Guidance to… accompany Social Care… (Self-directed Support) Act 2013
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?
“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”
24% not seen GP in last year
60% no social care assessment in 5 years
Severe ME-CFS
“a very individualised approach,with care being delivered in the patient’s own home as much aspossible.”
SGPS on ME-CFS 2010
Severe ME-CFS is a complex condition. How might targeted support and care be provided to this patient group?
“I am mostly bedridden and get out perhaps once a month, frequently less…I cannot have a telephone conversation as I am too weak.”
Hear ME, Influence M.E.
• Open meetings: - Collectively identify issues & inequalities - Solutions- Collaboration
• Accessibility – contribute remotely
• Inform & influence
• Support individuals, groups & communities
Working Together
• 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 reportwww.actionforme.org.uk/timetodeliver
Online forumwww.actionforme.org.uk/scottishhubforum
Contact [email protected]
Follow us on www.facebook.com/actionforme
www.twitter.com/actionforme
