M.E. Research and Practice conference at Hove Town Hall 7 October 2014 Slides from Sonya Chowdhury and Mary Jane Willows’ presentations, part one

M.E. Time to Deliver 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

32% not seen GP in past year 54% not attended specialist ME-CFS clinic Healthcare contact Monitor condition Review medication GP SurveysNew/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.”

69% want better informed GP 62% want more effective medication 30% want more home visits 35% rated ME/CFS clinic as very poor/poor Health care Resource for newly diagnosed, family/friends & health professionals Inform M.E. programme Roundtable discussions Small qualitative study on patient experience of specialist services “First I need a doctor to believe I am physically ill…I am so tired of having spent 25 years in the wilderness…”

“Although my specialist service does not prescribe graded activity/exercise, I have tried to do it myself & the result is a serious relapse. Pacing, which the team do prescribe, has been the one thing that has helped the most, as well as ensuring good sleep (as far as possible) & sufficient rest.” Management Approach Used Pacing 67% 58% Rest, including bed rest 67% 54% Medication to ease pain 65% 59% Vitamin/mineral supplement 62% 53 Medication to aid sleep 53% 52% Dietary changes 51% 43% Medication to help mood 42% 38% Complementary approach 35% 46% Cognitive behaviour therapy (CBT) 33% 26% Other medication e.g. for nausea 29% 23% Graded exercise therapy (GET) 23% 26% Graded activity therapy (GAT) 15% - Other 15% - Exercise on prescription 4% -

80% welfare benefit reform worries 21% GP unhelpful with evidence provision 8% in full-time work/education/training Welfare, employment & education Timely & personalised support Economic outcomes National data Emotional impact Fluctuating nature recognised Evidence provided when needed Extend welfare advice & support service Ongoing development of resources Further collaboration with larger consortia Employment support service “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 93% no social care assessment for carer Little known re impact for children/young people Carers Improved outcomes Support & finances Targeted resources Young carers resource “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”

25% not seen GP in last year 53% not visited specialist NHS M.E./CFS clinic in the past five years 60% no social care assessment in 5 years Severe M.E./CFS The most severely affected are often the most severely neglected Severe M.E. Symposium & AGM 14 th November 2014 London “I am mostly bedridden and get out perhaps once a month, frequently less… I cannot have a telephone conversation as I am too weak.”

More Information M.E. Time to Deliver: initial findings report Online M.E. Centre Contact me Follow us on

Association of Young People with ME (AYME) The voice of children and young people in the UK

National Picture - challenges Poor diagnosis: GP’s many still don’t recognise condition and are reluctant to refer Access to Specialist Medical Care: restricted postcode lottery Education: schools still not understanding condition leading to pressure on child and family Child Protection/Vulnerable Adult threats of, and actual proceeding Benefits claims rejected

AYME Nationally Works with the NHS specialist ME/CFS services and professional colleagues in education and social services to provide training, support and current information. Empowers children and young people with ME/CFS, their families and carers enabling them to be heard and to make informed choices. Promotes understanding and recognition of ME/CFS in children and young people amongst wider health, education and social care professionals, and the general public throughout the UK. “ I just felt that school didn’t understand, until someone from AYME came in to talk to them and it changed how they viewed me and my illness. I can’t thank AYME enough for that.” Becca 16

Patrick & family at DfE focus group to discuss and contribute to: Guidance on supporting pupils in schools with long-term or additional medical needs AYME was one of only 5 national charities invited to replace the previous guidance: Access to Education Department of Education November 2013 The voice of children and young people in the UK

AYME Nationally Helpline: 1,000 calls a year, ans. by trained & experienced staff now, in addition e-help s responded to National Support Workers: Children in crisis cases, 189 children benefitted in year one - funded by Children in Need Alert service: saving lives APPG, Forward ME, UK CFS/ME Research Collaborative, British Association of CFS/ME The voice of children and young people in the UK

SAM’s Team Leader Katie Metcalf I enjoy volunteering for AYME because I get to meet lots of lovely, brave, inspiring young people. When I first had M.E I felt like I was losing everything; AYME came to my rescue with friendship and support. It means a lot to be able to give something back and to make a difference to people's lives. Volunteering for AYME, and working with some very poorly young people, helps me to put my own illness into perspective. I love the way AYME is built up of the members themselves. We are all able to work together, in a very supportive atmosphere as we all know what each other is going through. Volunteering for AYME has given me a chance to develop my working skills so that when I am ready I will be able to go out into the world and say yes I may have been ill for a very long time, but I have learnt all of these things, and can make a difference!

Daily Telegraph 2014 “Lend a Hand” volunteering campaign. Katie, one of two finalists, and their guests, attended the event in London which marked the end of the national newspaper's Lend a Hand campaign - designed to recognise the work and efforts of volunteers in the UK.

Website stats Registered member users: 1298  Total current members end December 3,674  Total number of members since AYME began (1996 to16 April 2014) 8,369 Website traffic  Number of people visiting site New visitors: 26,833 Total visitors: 78,954

Fight for appropriate education Lack of empathy and understanding from professionals Benefits withdrawn No physiotherapy, OT or district nurse support available No respite care “.. mostly though, it feels like I've become too ill to get medical help. Healthcare professionals want to 'rehabilitate' me but when my body fails to respond properly, they seem to lose interest and I'm left alone to cope the best I can.” Clare 24 Severely Affected

Major Funders, Associations & supporters Chronic Fatigue Syndrome Research Foundation