Hear ME, Influence M.E. In Scotland Sonya Chowdhury Chief Executive

Our strategic touchstones

Where? 84% 4% 10% 2% 2,081

Who?

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 condition Review medication New/changing symptoms Setback/relapse support Assistance 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 approach Physical symptoms PLUS Emotional impact Knowledge & experience Listen & 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 outcomes Needs assessment Support provided when needed Aids & adaptations Personal 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 outcomes Emotional impact Fluctuating nature recognised Evidence 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 outcomes Support & finances Statutory 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 as possible.” 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

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