Transcript Chronic Fatigue

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?
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
32% not seen GP in past year
54% not attended specialist ME-CFS clinic
GP Surveys
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
69% want better informed GP
62% want more effective medication
30% want more home visits
35% rated ME/CFS clinic as very poor/poor
“First I need a
doctor to
believe I am
physically ill…I
am so tired of
having spent 25
years in the
wilderness…”
• Resource for newly diagnosed, family/friends & health
professionals
• Inform M.E. programme
• Roundtable discussions
• Small qualitative study on patient experience of specialist
services
Management Approach Used
2014
2008
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%
-
“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.”
Welfare, employment & education
80% welfare benefit reform worries
21% GP unhelpful with evidence provision
8% in full-time work/education/training
National data
•
•
•
•
Timely & personalised support
Economic outcomes
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.”
Carers
84% family member carers
93% no social care assessment for carer
Little known re impact for children/young
people
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”
Severe M.E./CFS
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
The most severely affected are
often the most severely neglected
“I am mostly
bedridden and
get out perhaps
once a month,
frequently
less… I cannot
have a
telephone
conversation as
I am too weak.”
Severe M.E. Symposium & AGM
14th November 2014
London
www.actionsevereme.eventzilla.net
More Information
M.E. Time to Deliver: initial findings report
www.actionforme.org.uk/timetodeliver
Online M.E. Centre
www.actionforme.org.uk
Contact me
[email protected]
Follow us on
www.facebook.com/actionforme
www.twitter.com/actionforme
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
The voice of children and young people in the UK
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
AYME Nationally
• Helpline: 1,000 calls a year, ans. by trained & experienced
staff now, in addition e-help emails 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- 2013 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 2013.
New visitors: 26,833
Total visitors: 78,954
Severely Affected
Fight for appropriate education
Lack of empathy and understanding
from professionals
Benefits withdrawn
nurse
No physiotherapy, OT or district
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
Chronic Fatigue Syndrome
Research Foundation
Major Funders, Associations & supporters