Enabling Self Management of Long Term Conditions

1
Enabling Self Management of Long Term Conditions

• Audrey Birt
• Chair of LTCAS

2

• What needs to happen to enable people to live
  well with long term conditions?

3
Definition of Long Term Condition
A long-term health condition is one of prolonged
duration, generally longer than a year, that may
affect any aspect of the persons life.
Symptoms may come and go. Usually there is no
cure but there are often things that can be done
to maintain and improve quality of life.
4
About LTCAS

• Alliance of voluntary organisations
• Around 60 members wider network of 200
• Launched May 2006 funded by Scottish Executive
  until January 09
• Give independent voice to common issues affecting
  people with long term conditions - main focus is
  policy and campaigning
• People not patients

5
LTCAS Vision
A Scotland where people with long term conditions
enjoy, not endure, full and positive lives, free
from discrimination and supported by access to
high quality services, information and support.
6
Self Management Strategy for Scotland

• LTCAS asked by Scottish Government to produce
  self management strategy
• Short term task group took forward, consulted
  LTCAS network and final strategy submitted to CMO
  long term conditions steering group Jan 2008

7
Self Management Strategy for Scotland
What does self management mean?
It is the successful outcome of the person and
all appropriate individuals services working
together to support him/her to deal with the
implications of living the rest of their life
with one or more long term condition.
Self management empowers a person to learn about
his/her condition, acknowledge the impact on
his/her life, make changes and identify where
support is needed.
8
Self Management Strategy for Scotland

• What support do people need to self manage?
• High quality, accessible, up-to-date information
  and education
• Effective communication with professionals
• Skills to develop healthy responses make
  informed choices
• Emotional psychological support

9
Self Management Strategy for Scotland

• What are the key stages at which people need
  support?
• Diagnosis
• Living for today
• Progression
• Transitions
• End of life

10
Self Management Strategy for Scotland
Key recommendations
11

• Principles on Self Management
• for Health, Social and Voluntary Sectors
• Evaluation systems should be, ongoing and shaped
  by my experience. They should be non judgemental
  and focus on more than medical or financial
  outcomes.
• Be accountable to me and value my experience
• I am involved in my own care. I, those who care
  for me and organisations that represent me, shape
  new approaches to my care
• I am involved and support is flexible and
  responds to my needs
• My needs are met along my life journey with
  support aimed at improving my physical,
  emotional, social and spiritual wellbeing.
• I am a whole person and this is for my whole
  life
• Professionals communicate with me effectively.
  They help ensure I have high quality, accessible
  information. They also support my right to make
  decisions.
• I am the leading partner in management of my
  health
• SM does not mean managing my long term condition
  alone. Its about self determination in
  partnership with supporters.
• Self management is not a replacement for
  services. Gaun yersel doesnt mean going it
  alone

12
Self Management Strategy for Scotland
The draft strategy feels like someones actually
been inside my head and reflects exactly what
Ive been through at different times and gives
real practical advice and guidance of the kind of
staffing and support required to make life easier
for people living with long term
conditions. Respondent to consultation on draft
Self Management Strategy
13
Self management supports self efficacy and
empowerment

• Our definition of non-compliance is 2 people
  working toward different goals. Patients often
  become frustrated and dissatisfied if they feel
  that they are being judged and blamed for their
  inability or unwillingness to achieve medical
  goals, or if the physician does not consider
  their goals to be important. Once patients are
  viewed as collaborators who establish their own
  goals, the whole concept of compliance becomes
  irrelevant. When patients work toward their own
  goals, their motivation is intrinsic. Because
  true and lasting motivation comes from within,
  patients are able to make and sustain changes in
  their behaviour using this patient-centered
  approach. Bob Anderson et al

14
LTC voluntary sector - key features

• Big
• 8500 organisations working on social care
• 1000 on older people
• 2000 on disability
• 3000 on health
• Old - e.g. Diabetes UK established 1934 to
  campaign for access to insulin right of people
  to take active role in management of condition.
• People-led.

15
Some case studies The Thistle Foundation Diabetes
UK Scotland and RNIB Scotland Mindfulness
Scotland
16
An Introduction to Lifestyle Management-working
with the person not the condition

• Linsay Graham
• Lifestyle Management Service
• Thistle Foundation, Edinburgh
• lgraham_at_thistle .org.uk

17
Self Management as a Process

• Transformative
• Regaining Purpose
• A process of moving towards acceptance of their
  current health condition
• Moving on in life in new and rewarding ways
  despite limitations
• Greater control, coping and confidence

18
What people want Medical needs

• Knowledge of condition
• Support in managing medical aspects of the long
  term condition
• Rehabilitation long term review/ ongoing
  contact

19
Common Self Management Approaches
Condition specific Eg. Heart disease
Condition specific Eg. COPD
Condition specific Eg.Chronic pain
Generic needs Person focused
20
Self Management and Self Care
Self Care
Self Management
21

Management of People with Long Term
Conditions
Medical Management of Long Term Conditions
22
What people want -Non medical needs

• Psychological support
• Assistance with coping with change/ emotional
  impact
• Lifestyle management - moving on with life
• Support to make health behaviour changes
• Advocacy
• Peer support -group based/ individuals/
  volunteers
• Support groups
• Exercise classes
• Relaxation classes
• Walking
• Weight management
• Smoking
• Support for carers

23
Thistle Foundation Long Term Conditions
Management Facility

• Facility
• Gym
• Pool
• Café
• Yoga rooms
• Relaxation rooms
• Seminar rooms
• Therapy rooms
• Physiotherapy
• Lifestyle management service
• Non medical needs
• Individual, group services
• Support for maintenance groups
• Peers support training
• Carers

24
Who can benefit from our service?

• People who
• Are struggling to come to terms with diagnosis
• Are struggling with the physical, mental and
  emotional effects of living with a LTC
• Are at risk of increasing disability due more to
  psychosocial factors rather than
  physical/biomedical factors
• Are trying to cope with health issues and extreme
  life situations
• Have largely been excluded from mainstream
  services people presenting with medically
  unexplained symptoms such as ME/CFS
• Have mild to moderate mental health problems
  perhaps who are on a long waiting list for
  psychological services
• Are hoping to cope better, gain more control and
  build confidence to move on in life in more
  effective ways
• Have not responded well to the self care agenda
  that of learning more about illness, compliance
  with medications, and behaviour changes

25
Principles of Lifestyle Management Recovery and
the Solution Focused Approach

• Adopting a non expert stance, workers focus on
• what the client wants
• evidence of resource, coping, control, confidence
• signs of strength, achievement
• Competency, qualities that might help
• descriptions of clients preferred outcomes
• change

26
Biopsychosocial Model of Illness

• It is not just the extent of physical impairment
  
• but cognitive, behavioural and other psychosocial
  factors
• which most closely correlate with poor prognosis,
  long term disability and quality of life

27
Disability spirals
28
Secondary Symptoms Cycle

• chronic fatigue
• poor - sleep
• - concentration
• - memory
• pain, stiffness
• anxiety, depression
• stomach problems

29
Lifestyle Management in Practice
Co- Facilitation
Referral/ self referral
Individual meeting - menu
Lifestyle courses
Peer Training
Individual support
Ongoing support groups
Use of facilities
Open access
30
Lifestyle Management Courses

• 10 weekly, 3 hour sessions
• Review, change based discussion
• Exercise
• Relaxation
• Discussion topics -
• Lifestyle management philosophy, sleep, stress,
  energy management,
• relaxation, getting active/ goal setting,
• time management/ planning, communication skills,
• mind body connection, preventing, minimising,
  recovering from relapse,
• review and forward planning
• Self efficacy/ outcome expectancy - a predictor
  of health behaviour changes

31
OUTCOMES

• 80 completion rate
• Independent review 2007
• Self- efficacy questionnaires
• Research and evaluation a priority for 2008/9

32
OUR TEAM

• Salaried - includes individuals with backgrounds
  in physiotherapy, occupational therapy, mental
  health, fitness management and Magic!!
• Volunteer Peer Facilitators

33
Gozie Joe AdigweRNIB ScotlandAnne-Marie
LoveDiabetes UK Scotland
34
Self management

• Patient information and education key factors
• Information must be memorable, clear, easy to
  understand

35
Challenges in developing resources for minority
ethnic population

• Diversity of minority ethnic population
• Translation of resources - retaining clear
  accurate information
• Ensuring materials are culturally competent
• Using appropriate communication styles

36
Developing a self management resource for Chinese
community

• Partnership working between
• RNIB Scotland
• Diabetes UK Scotland
• Chinese Healthy Living Centre

37
Chinese Healthy Living Centre (CHLC)

• Idea of audio leaflet discussed with CHLC
• Usefulness
• Appropriate format
• Content
• Cultural competency

38
Development of the audio leaflet

• Translator/narrator provided by CHLC
• Check leaflets for accuracy
• Timings
• RNIB Transcription Service
• Recording editing

39
Development of booklet for audio leaflet

• Design company
• Images to be culturally sensitive
• Information to be clear
• Not too much text
• CHLC
• Translated text
• Checking final booklet

40
Timing costs

• 3-4 weeks to complete
• Costs (for 100 copies)
• - Narrator 185
• - Studio 50
• - Design printing 962
• - CDs 100

41
Evaluation

• Everyone had listened to the CD (a few had
  listened to it more than once)
• All found the information
• Easy to hear
• Easy to understand
• Useful
• (Focus group - half had diabetes in their family)

42
Evaluation

• Everyone had learned something new
• Everyone said they would lend the CD to someone
  (2 had already lent it to friends)
• A number reported changes to their lifestyle

43
Lifestyle change

• Some had made changes to their eating habits.
  (There was a discussion during the group on
  reducing fat content of soup).
• Some reported changes in physical activity. A
  number were planning to walk more as a result of
  the CD.
• Others were still contemplating changes to their
  lifestyle.

44
I liked the colours and the happy woman on the
front..

• People liked the images in the booklet
• They found them clear and colourful'

45
I found the pictures clear..
46
What is diabetes?
47
Hypos
48
A useful self management tool?

• CD better than leaflet of text
• Accessible
• Listen looking
• High quality set of images
• Cost effective
• Model of partnership working between charities
  and community based organisations to produce a
  resource which all have ownership of

49
Questions move people along their journey
through life. Answers stop the process of
searching.
50
Benefits of joining LTCAS

• Information bulletins
• Access to large network and support to share
  information
• Opportunities to be involved in national policiy
  making
• Link to your website from LTCAS site
• Be part of a voice for the 2 million people who
  live with long term conditions in Scotland

51
For further information
Shelley Gray (Development Manager) 0845 478
6329  shelley.gray_at_ltcas.org.uk Visit the
exhibition to find a rich selection of activity
produced by the sector to support people with
long term conditions. www.ltcas.org.uk