Introduction
by Dr Harry Burns and Susan Douglas-Scott
Long-term conditions pose many challenges to Scotland's population and to Scotland's health and social services. It is estimated that around 2 million people in Scotland are living with long-term conditions.
A key strand of Scotland's health policy, Delivering for Health, focuses on long-term conditions. Central to taking this work forward is a partnership between The Scottish Executive Health Department and the Long Term Conditions Alliance Scotland ( LTCAS).
Traditionally in health care, progress is made by getting together a group of high-ranking health and social care experts who offer their opinions to inform strategic thinking. We quickly realised that in the field of long-term conditions, such an approach would not be right.
What is most important in this area is not just the undoubted expertise of professionals, but of the real experts - people living with long-term conditions, their unpaid carers and the voluntary groups who support them.
The events in Glasgow and Aberdeen therefore turned the traditional model of seeking consensus on its head. The format of the events was equally unconventional. They were designed to ensure that the voices of people living with long-term conditions and their carers predominated. Rather than these people being 'talked at' by expert presenters, it was their contributions in small group work that provided the value from the day.
It is the ideas, views, experiences and needs shared in those groups, that reflect the real issues that impact on the quality of life of people with long-term conditions and their carers and it is these that form the basis for the messages in this report. I believe this gives the report genuine authenticity as a record of the events. More importantly, it provides service planners with vital information and ideas for action that are based not on theoretical ideas, but on people's lived experience.
The success of the two events is down to the 400 participants who came from diverse walks of life to share their thoughts, experiences and dreams. Their ideas and observations will make a major contribution as we embark on this journey to improve services for people with long-term conditions and their carers. It is only a beginning, but an important beginning, and we are totally committed to doing everything we can to put these ideas into action.
This report takes all the aspirations for improving services for people and their carers with long-term conditions and pulls then into key themes and messages for people who plan and manage services. Whilst some individual messages will not be included what is important is that we do not lose these.
All the outputs from the day are captured on the Long Term Conditions Alliance Scotland website www.ltcas.org.uk and will be built upon as we move forward in partnership on making these visions and aspirations a reality.
Harry Burns
Chief Medical OfficerScottish Executive Health Department
The Long Term Conditions Alliance Scotland ( LTCAS) was established in 2006. Our aim is to bring together hundreds of voluntary and community organisations across Scotland. Our major objective is to give a national voice to ensure the interests and needs of people living with long-term conditions are heard and addressed.
LTCAS were very pleased to be invited to participate in the design, delivery and as participants at these key consultation events. For LTCAS this meant we could begin to address some of our key aims.
LTCAS' four overarching aims featured strongly in these events:
1. Influencing and campaigning
2. Supporting and improving practice
3. -Supporting the voluntary and community long-term conditions sector
4. Tackling health inequalities
By working in partnership with NHSScotland and by the involvement of all the participants who live on a day-to-day basis with long-term conditions, LTCAS believes real change can and will happen.
Our vision is for a Scotland where people with long-term conditions and carers enjoy full and positive lives. This includes being free from discrimination and supported by access to high quality services, information and support. We believe these events, this report and the Scottish Executive's Health Department's backing is a strong foundation to build better services fit for today and for the future.
Those of us involved with LTCAS believe this is important as we are people with lives and families, not just patients. In order to live well as people with long-term conditions we need quality support and services. We believe this means quality for life as life is for living not enduring. If our lives are improved then there will be a reduction of the burden that long-term conditions place on individuals, families and society. The changes committed to by Harry Burns and his team should mean that this will happen. It is an exciting time for us all to be involved and LTCAS will continue to speak to everyone necessary to ensure change as suggested in this report becomes reality for us all.
Susan Douglas-Scott
Chief Executive, Epilepsy Scotland and non-Executive Director, Long Term Conditions Alliance Scotland