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 susan.ds@ltcas.org.uk

0141 404 0231