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Susan Douglas-Scott
Long term Conditions Alliance Scotland
Who are we?
Long Term Conditions Alliance Scotland
�Umbrella body for organisations that represent people living with long term conditions
�Now over 100 members
�Lead role in self management agenda
What do we do?
LTCAS aims to bring together hundreds of
voluntary and community organisations across
Scotland to give a national voice to make sure
the interests and needs of people living with long
term conditions are addressed
Links with Scottish Government and NHS
� Long Term Conditions Unit
�Better Together
�Mutuality Board
� Long term Conditions Collaborative
�NHS Inform
�NES
�QIS
Our Vision………
is for 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
This means a culture change is needed!
Long Term Conditions Alliance Scotland role
• People not patients
• Person centred approach
• Involvement of voluntary organisations
A few examples of our members
• MS Society Scotland
• Chest, Heart & Stroke
Scotland
• Diabetes UK Scotland
• Cancer Link
Aberdeen and North
• Epilepsy Connections
• Epilepsy Midlothian
• Gorbals Healthy
Living Network
• Epilepsy Scotland
• Bipolar Fellowship
Scotland
• Spinal Injuries
Scotland
• HIV Scotland
Membership
• Strong Voice
• Shared agenda
• Hub
Events
• Policy
• Facilitated discussions
• Shared values
• Practice development
Why are we needed?
• Strengthen the voice of the 2 million people affected
• Many people have more than one long term condition
• Scotland’s life expectancy is improving and people are living longer with long-term conditions
• Long term conditions are the most common cause of death
• They are also strongly associated with social deprivation
National Priority
• LTCs identified as a priority in national policy
• Why?• Demographic change = more LTCs and people living longer
• LTCs account for 60% of deaths worldwide
• 80% of GP appointments in Scotland
• Health policy & services need to change to meet the challenge of LTCs
Changes needed in policy and services
�Move from “illness” based services
�More anticipatory care
�Move from hospital centred to community based support
�More integration of care
�People as active partners in their own care
Key opportunities
• Self management strategy
• Effective programmes across Scotland
• Systematic evaluation
• Delivering what is valuable to people
Self Management strategy
� LTCAS asked by
Scottish Government
to lead development
of strategy
�Strategy developed in
consultation with
LTCAS network
What does the strategy explore?
� What self management means for people
� Key stages where people need support
� The kind of support people need
� The approach people need from those providing services
� How self management can be developed in Scotland
What is Self management?
• Process
• Information
• Education
• Support
• Services
• Leading Partner
• Empowering
• Living well
What does it all mean?
� Self care � everyone does this every day eg brushing teeth, plaster on a cut,
� Self management � where people live good quality of life with long term condition
� Support for self management � provided by voluntary organisations, health/social care
professionals, unpaid carers
Key points on self management
� Person-centred - individual in driving seat
� Empowerment - decisions, goals, condition management
� Not about ‘going it alone’
� Not an alternative to NHS services/treatments
Outcomes of self management
� Far better quality of life
� Returns people’s sense of control
� Increases confidence and self esteem
� Better management of condition
� Reduction in GP visits
� Improvements to other areas of life e.g. family, work, social life
What’s it really like?
People with long term conditions already self
manage
…but most do it without support…
…and when people do find their way to support
this often transforms their quality of life
What do people need then?
� Information (leaflets, websites, info evenings)
� Advice
� Education
� Self management courses
� Peer support
� Emotional & psychological support
� Help with other issues e.g. family, housing, employment
Appropriate help?
What do people want from health professionals?
� Communication� Information
� Viewed as person/partner, not patient/condition
Participants at Living Well event told us
“Communication needs to be improved by recognising the importance of the person not just the condition.”
“Don’t just whip out the prescription pad - listen! Ask…”
Principles for supporting self management
Voluntary sector roles
�Service provision
�Funding for services
�Provision of support
�Research
�Policy & campaigning
�Training & practice development
�Critical friend
Where are we heading for?
� People not patients
� Ordinary lives
� Acceptance
Where to find us
LTCAS
Venlaw Building
349 Bath Street
Glasgow G2 4AA
www.ltcas.org.uk and [email protected]
0141 404 0231