Please see below an overview on the new two year project based on the Tommyontour / life stories
I will be a voluntary partner in the project supported by the Scottish Government alongside my Tommyontour campaign
life stories can make a difference !
Dementia is a long lasting and progressive condition, on average lasting 10 years - over which time the individual’s abilities and skills deteriorate, including memory, cognition, communication, decision making and activities of daily living. This makes caring for someone with dementia, a particularly difficult and different experience, to caring for, for example, physically frail elderly people.
An analysis of calls to the 24 hour dementia helpline and Tommy on Tour Carers’ letters demonstrates that carers often feel isolated and that there is insufficient recognition of the range of complex issues about which they are expected to have understanding, from legal and financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring. Given the life span of the illness and the varying rate of deterioration, Carers of people with dementia often care in very changing and challenging circumstances for periods of up to 10 years and sometimes longer.
Reaching out to carers of people with dementia and giving them a voice through a “letters campaign” has been part of an awareness raising activity of Tommy Whitelaw, who has experienced first hand what it is like to care for someone with dementia. Tommy has also made a film about dementia and caring for someone with dementia with a view to reaching a wide audience in the
and beyond. UK
The objective of this report is to consider how work to date can be captured and expanded within a wider project framework centered within the
Supporting Rights and the Carer Voice
fundamentally supports the objectives of the Charter of Rights for People with Dementia and their carers which adheres to the PANEL approach to Carers Rights – that is that Carers of people with dementia have the right to - ALLIANCE
· Participate in decisions which affect their human rights;
· Accountability of those responsible for the respect, protection and fulfilment of human rights;
· Non Discrimination and equality;
· Empowerment to know their rights and how to claim them;
· Legality in all decisions through an explicit link with human rights, legal standards in all processes and outcome measurements.
The ALLIANCE also recognizes the wider policy context within which the Carer Voice can be heard.
The Carers and Young Carers Strategy 2010 – 2015 sets out Scottish Government priorities for carer support including acknowledging that carers should be recognized and valued as equal partners and that they should be supported and empowered to manage caring responsibilities in good health. There is the opportunity for the proposed project to provide useful information for Scottish Government’s ongoing work on Carer strategies.
The National Dementia Strategy, designed to make real and measureable changes to dementia services and people’s experience of them over an initial 3 year period to 2013, with a second strategy to follow, offers further opportunity for input and influence.
Further to this the Christie Commission report into reforming public services has as one of its clear principles – reform to empower individuals and communities receiving public services by involving them in the design and delivery of the services which they use.
There is therefore the opportunity within a broad policy context to harness the voice of unheard carers of people with dementia and in particular those hidden carers, who are more isolated and therefore less likely to contribute to policy consultations.
recognizes the importance of the Carer Voice in informing future service provision and in empowering carers themselves. To this end we propose a project which will – ALLIANCE
- Harness the work undertaken to date, particularly by the Tommy on Tour campaign;
· Develop this by supporting Tommy Whitelaw to undertake further outreach work to carer organisations across
· In doing this, the ALLIANCE will highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;
· Capture the experiences of carers across
with a view to informing future policy and service provision; Scotland
· Raise awareness of the issues around caring for someone with dementia including among health and social care students;
· Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;
· Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent lives;
· Work with other Carer Organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users. (As a network organisation which includes organisations such as - Alzheimer
, Carers’ Coalition and Age Concern within our membership, we are well placed to undertake this role). Scotland
The project will do this through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; network events and consider possible future film to raise awareness/understanding.
· Greater understanding by health and social care professionals of dementia and the carer journey;
· Reduce isolation of carers of people with dementia;
· Increase awareness of carer rights;
· User friendly information to support awareness raising;
· Inform policy and practice on carer matters.
· Gather information supporting family and person centred approaches to health and social care.
Reporting to Scottish Government
A quarterly update will be provided to Scottish Government outlining ongoing activity. An overall report will be provided at the end of the project identifying outcomes achieved and noting key messages which have arisen from Carer engagement.
For further information about the
Irene Oldfather, Programme Director
For information on “Carer’s voices” contact:
About The Health and Social Care
Alliance Scotland (The ) Alliance
Long Term Conditions Alliance Scotland (LTCAS) has recently been re-named The Health and Social Care
Alliance Scotland, People at the Centre (The ).This reflects the developing landscape and the role the organization has already begun to play within this as strategic partner of Scottish Government. This change builds on the roots of the organization in the voice of people who live with long term conditions and will serve to strengthen the volume and impact of that voice. ALLIANCE
ALLIANCE vision is for a 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. Scotland
is the national third sector health and social care intermediary. It brings together over 250 organisations including key national Carer Organisations to ensure the voice of people and unpaid carers, and the expertise of the third sector, are influential in shaping policy and practice. Members include large, national support providers as well as small, local volunteer-led groups. Many NHS Boards and Community Health and Care Partnerships are associate members. ALLIANCE
ALLIANCE is a strategic partner of the Scottish Government and has close working relationships with national health and social care bodies, including NHS Education for and Healthcare Improvement Scotland. The organization represents the third sector on the Quality Alliance Board and related Delivery Groups and on a range of key strategic activity, including DALLAS (Delivering Assisted Lifestyles at Scale) and the Scottish Assisted Living Initiative. Scotland
has a track record of helping bring about lasting, transformational change through the self management agenda. By harnessing the capacity of people living with long term conditions and unpaid carers across ALLIANCE , The Alliance and its members have helped to change policy, practice and the culture of services. The report Impact, an Evaluation of the Self Management Fund for Scotland 2009-11 describes the return on investment realized through the Fund. Scotland
has a number of work streams that are closely aligned with Carers, Dementia and Older People including the PATH to Active Ageing Report and the work of Life Changes Trust to outline an investment programme for BIG Lottery £25million spend. ALLIANCE
In addition to this the ALLIANCE is developing a person-centeredness agenda, including its 12 Propositions for Social Care and related work on health and social care integration, recently established Change Fund: Enhancing the Role of the Third Sector Programme and Active Ageing Programme.
All of this work sits in the context of the Christie agenda and is intended to contribute to: improving outcomes, including supporting human rights and independent living; building capacity of individuals, families and communities; shifting to preventative investment; integrating services; and developing a sustainable approach in the face of falling resources and rising need.