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 mesonya@actionforme.org.uk

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