Launch of the Self Management Strategy for Scotland

A journey to the self management strategy for Scotland

Susan Douglas-Scott, Chief Executive Epilepsy Scotland and non Executive Director LTCAS

Angela Donaldson, Director Arthritis Care Scotland and non

Executive Director LTCAS

The journey begins: diagnosis please

The long and winding road

Footprints in the sand

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

Before that……..

Gaun Yersel conference November 2006

Living Well events

Sub group of the board of LTCAS

LTCAS members and other stakeholders

Circulating ideas, feedback, writing and editing

Key points emerged about self management

• Person-centred - individual in driving seat

• Empowerment - person has control over their own life, decision, goals and condition management

• Not about ‘going it alone’

• Not an alternative to NHS services/treatments

“Self management is not to replace service provision, but in addition to your care.”

Participant at Living Well event

key stages where people need support emerged

• Diagnosis• Living for today• Progression• Transitions• End of life

What people want from self management

• Far better quality of life

• Returns people’s sense of control

• Increases confidence and self esteem

• Better management of condition (reduced symptoms,

complications, pain, fatigue and depression)

• More effective use of NHS services including concordance

with medicines

• Reduction in GP visits

• Improvements to other areas of life such as family, work,

social life

What it would look like if the strategy works

What needs to happen? How can this be achieved?

More support for people with long term conditions

Increase capacity of voluntary sector (‘hub’ & grant fund)

Develop practice in supporting self management

New LTCAS Director of Self Management post

Culture change towards person-centred, holistic approach where person is the leading partner

Training/education for professionals & for people receiving services

People accessing support that exists

Improve knowledge & referral systems between NHS & voluntary sector

What does self management mean?

Positive feedback – what a relief!

“The draft strategy feels like someone’s actually been inside my head and reflects exactly what I’ve 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

How this feels for us

Coming together of years of:

• Thinking• Understanding • Talking (moaning!)• Campaigning

It’s personal as well as professional and another milestone on the journey

Where to find us

www.ltcas.org.uk

Princes House (S5)5 Shandwick PlaceEdinburgh EH2 4RG

0845 478 6329

And from later thismonth

Venlaw Building349 Bath StreetGlasgow G2 4AA

Launch of the Self Management Strategy for Scotland

Table discussions - moving forward

In implementing the strategy what are…

• The risks

• Your hopes

• Your vision for the future

What next?Audrey Birt

Chair of LTCAS

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.

About LTCAS• Alliance of voluntary organisations• Around 60+ members & wider network of

200• Launched May 2006 & funded by Scottish

Government• Give independent voice to common issues

affecting people with long term conditions - main focus is policy and campaigning and supporting self management

• Invited to develop the strategy for self management in Scotland

• People not patients

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-centred approach.”

Bob Anderson et al

National Policy - current activities in long term conditions

• Chief Medical Officer (CMO) Long Term Conditions Steering Group:

LTC Strategy / action plan ‘Living Well with Long Term Conditions’ events/report Strategy for self management CHP Long Term Conditions Toolkit Improvement Programme / Collaborative Self Management Secondee

What needs to happen to enable the implementation of the strategy?

• Embed a culture of the person being the leading partner in their own health and well-being

• Establish tools to “make it easy to do the right thing”

Self Management Strategy for Scotland

Key recommendations:

What needs to happen? How can this be achieved?

More support for people with long term conditions

Increase capacity of voluntary sector (‘hub’ & grant fund)

Develop practice in supporting self management

New LTCAS Director of Self Management post and self management fund

Culture change towards person-centred, holistic approach where person is the leading partner

Including training/education for professionals & for people receiving services

People accessing support that exists

Improve knowledge & referral systems between NHS & voluntary sector

Make sure services work together

“GPs also need training in the use of the support network, e.g. pharmacists, voluntary sector, specialist services & what is available locally and nationally.”

LTC voluntary sector - main roles

• Service provision• Funding for services • Provision of support (info, advice, support

etc)• Research• Policy & campaigning• Training & practice development

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

National self management steering group for long Term Conditions

• To consider and advise on all matters related to self-management in long term conditions in Scotland• To provide support and advice to component projects agreed by the the SMSG to support the following:

Embedding culture change Agreeing principles of Self Management Agreeing scope and content of personal care plan and electronic health record Improving communication skills of staff and people with long term conditions End of life care planning Reference group for National information and support service Reference group for quality standard setting Reference group for research in self management

We need to continue to involve people and communicate developments

“Questions move people along their journey through life.

Answers stop the process of searching.”

Dreamers of the day?

All men dream;but not equally.Those who dream by night in the dusty recesses of their mindsAwake to find that it was vanity;But the dreamers of the day areDangerous men,That they may act their dreams withOpen eyes to make it possible

TE Lawrence