Dementia Carer Voices Mid Term Report - Update

 Dementia Carer Voices, managed by the ALLIANCE, is an initial two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognises the importance of the carer voice, in informing future service provision and in empowering carers themselves.

The project aims to –

• Harness the work undertaken to date by the Tommy on Tour campaign, and support Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.
• 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 Scotland with a view to informing future policy and service provision;

·        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 within and beyond the ALLIANCE’s network to ensure that relevant strategies are well informed by the views of service users.

This report will explore the impact that Dementia Carer Voices has had in its first nine months, through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information through social media, network events and awareness raising films.

Anticipated Outcomes and Related Project Activity

Greater understanding by health and social care professionals of dementia and the carer journey Since January, Project Officer Tommy Whitelaw has delivered presentations to NHS Health Professionals and Social Care Professionals in a variety of settings including NHS staff events, universities and colleges. These talks use the personal stories and experiences of people with dementia and their carers to inspire and motivate staff, highlighting areas of possible service improvement.

Hospitals 17.01 Victoria Infirmary 05.03 Southern General Hospital 09.04 Southern General Hospital 16.04 Southern General Hospital 23.04 Southern General Hospital 30.04 Southern General Hospital 11.06 Glasgow Victoria Infirmary 02.07 Vale of Leven Hospital 03.07 Royal Free Hospital London 09.07 Vale of Leven Hospital 01.08 Glasgow Royal Infirmary 27.08 Glasgow Royal Infirmary 03.08 Glasgow Royal Infirmary 17.09 Glasgow Royal Infirmary Conferences / Other 22.03 SDCRN Annual Conference 19.04 Alzheimer Show London 19.04 Camden Council DA Event 21.04 Improving links in Primary Care Meeting 01.05 ALLIANCE Annual Conference 30.05 Person Centred H&C Conference 20.06 RCN Scotland Board 21.06 NHS GGC Releasing Time to Care Event 04.07 Health Education East of England Staff Development Day 08.08 NES/ SSSC Dementia Programme Board 10.09 Care Inspectorate Staff Development Day 11.09 Care Inspectorate Staff Development Day Universities 16.02 Glasgow Caledonian University 19.02 Glasgow Caledonian University 12.03 Glasgow Caledonian University 04.06 Dundee University 05.08 Dundee University 08.08 Dundee University 17.09 Glasgow University Colleges 05.03 Cardonald College 11.03 Cardonald College 15.03 Ayr College 28.03 Reid Kerr College 07.05 Reid Kerr College Tommy shared his story for use in NHS Greater Glasgow and Clyde’s Patients’ Stories Library for hospital staff. 1000 copies of the film were distributed to ward sisters for use as a staff training resource and were shown across NHSGGC hospital sites during Carer’s week 2013 to raise awareness about the importance of supporting carers in contributing towards delivering person centred care.   Similarly, Tommy’s address to the Care Inspectorate’s staff development conference on 11th September was filmed and made available online for staff training purposes. Dementia Carer Voices is participating in the rolling out of the ‘Getting to Know Me’ document across NHS Greater Glasgow and Clyde, which records personal information about vulnerable elderly patient’s likes and dislikes, names of family and friends, and what may be worrying them during admission to an acute setting. Tommy is introducing the document by sharing his experiences of caring for his late Mother Joan with Lead Nurses and staff, and therefore highlighting the importance of ‘remembering the person’ and looking beyond an individual’s diagnosis. Project Officer, Tommy Whitelaw was presented with the Jess Barrow Award for Campaigning and Influencing at this year’s Age Scotland Awards, held at the Scottish Parliament. The award recognises an individual or group whose campaigning has highlighted a specific issue and affected change to benefit older people.

The above activity contributes to one of the two key improvement areas identified in Scotland’s first National Dementia Strategy (2010) – improving dementia services in acute general hospital care.

“General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes.”

The activity also complements the 10 – Point National Dementia Care Action Plan for Acute Care within Scotland’s second National Dementia Strategy (2013) and recent workforce initiatives such as the Alzheimer Scotland Dementia Nurse Consultants and the Dementia Champions.

Reduce isolation of carers of people with dementia Dementia Carer Voices has undertaken a range of activity to promote carer self- identification, highlighting the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feeling enabled to ask for additional help when it is needed. Delivering presentations at carer events across Scotland, sharing Project Officer Tommy Whitelaw’s own experiences of caring and recurring themes from ‘life story letters.’

19.02 South Ayrshire Carers Dementia Awareness Day 26.02 ‘Making Life Easier’ Event Murrayfield 14.03 Lockerbie Carers Dementia Group 22.03 SDCRN Annual Conference 19.04 Alzheimer Show London 19.04 Camden Council Dementia Awareness Event 01.05 ALLIANCE Annual Conference 02.05 North Ayrshire Council Carer’s Strategy Event 09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week 18.06 Presentation to Sainsbury’s staff Prestwick 20.06 ALLIANCE Involvement Networking Event 11.07 Glasgow North East Carers 31.07 Glasgow North West Carers The BBC Radio Scotland Medical Matters: Caring for Carers programme featuring Tommy Whitelaw was re-aired twice in February due to high levels of demand. Dementia Carer Voices was a founding partner in the production of the “It’s Okay to ask for help” carer engagement film along with NHS Greater Glasgow and Clyde, Glasgow City Council Social Work Services and Alzheimer Scotland, supported financially by Glasgow CHP. The video highlights the impact of supporting a family member with dementia and the benefits of accessing carer support services in the City. The film was officially launched during Carers’ week 2013 and a total of 2000 copies are to be distributed; in carers booklets via Glasgow CHP (900) to other clinics and services including carers’ centres (500), Alzheimer Scotland (300) and the ALLIANCE (300).

The above activity will help people with dementia and their carers in adjusting to the diagnosis, navigating through the range of services available and planning for future care, and therefore complements;

·        The Scottish Government’s national commitment on post diagnostic support introduced in April 2013.

And contributes to;

·        Action Point 4.3 of the Carers and Young Carers Strategy for Scotland 2010-2015. 

“Over the next five years, local authorities and Health Boards, with partners, should seek to provide preventative support to carers and minimise the need for crisis intervention.”

·        First Challenge identified in Scotland’s National Dementia Strategy (2013-16).

“We must offer care and support to people with dementia and their families and carers in a way which promotes wellbeing and quality of life, protects their rights and respects their humanity. This is a moral imperative and it is unacceptable that too often the experience of people does not meet this standard.”

Increase awareness of carer rights The Dementia Carer Voices project flyer (2500 of which have been distributed at health and social care professional, and carer events) incorporates the PANEL approach to Carers Rights, and informs carers of the rights they possess under the Charter of Rights for People with Dementia and their carers. Dementia Carer voices ran an hour long workshop at the ALLIANCE annual conference on ‘Supporting Rights and the Carer Voice’, which explored the contribution of a human rights based approach to dementia care, and the additional work required to embed this vision more firmly into culture and everyday practice. Workshop participants (including Health and Social Care professionals, voluntary sector staff, and carers themselves) identified a number of cultural and systemic barriers to the protection of the human rights of people with dementia and their carers in health and social care settings ·        Stigma and discrimination against people with dementia ·        Staff turnover and time constraints imposed on care staff ·        Low awareness among staff of duties to promote, protect and fulfil human rights ·        Perception among staff that it is too costly to promote human rights ·        Low human rights awareness among people with dementia and their carers themselves ·        The fear of speaking out among people with dementia and their carers This work reflects two of the Key Outcomes of the Scottish National Dementia Strategy (2013-16): ·        “better respect and promotion of rights in all settings…” ·        “people with dementia in hospitals or other institutional settings always  being treated with dignity and respect”

User friendly information to support awareness raising Dementia Carer Voices has disseminated project and campaign information through its newsletters and active social media presence through Twitter and the ‘Tommy on Tour’ blog. ·        ‘Tommy on Tour’ Blog has received 100,000 views since 1st January 2013. ·        Twitter account followed by an additional 1900 individuals since 1st January 2013. Project materials such as a pop-up poster, 2500 campaign flyers, and key messages booklet have been produced and distributed at carer, and health and social care professional events.

Inform policy and practice on carer matters. ·        Dementia Carer Voices was the subject of a Members’ Business Debate on 20/03/13. MSPs debated Jackie Baillie MSP’s motion which highlighted the role played by carers of people with dementia, the challenges they face and the importance of supporting them wherever possible. ·        Cross Party support from across the Chamber was voiced in support of the project. ·        The Dementia Carer Voices project team produced a ten page briefing paper highlighting the ‘human impact’ of caring for a loved one with dementia, which was heavily referenced throughout the debate.  Project Officer Tommy Whitelaw delivered presentations at the following events. 02.02 Scottish Liberal Democrat Health Conference 20.04 Scottish Labour Party Conference 02.05 North Ayrshire Council Carers’ Strategy Event

Gather information supporting family and person centred approaches to health and social care. Dementia Carer Voices continues to collect ‘life story’ letters, which detail the views and experiences of those caring for someone living with dementia, and are analysed to generate key themes around which future education and awareness raising activity will take place. A Dementia Carer Voices survey is currently in operation to analyse service user experiences across a range of care settings. Key areas examined by the survey include: ·        Carer’s experiences of accessing support and services ·        Carers needs and the impact of the caring role on their quality of life ·        Advice for fellow carers/ health and social care professionals ·        Profile of respondents/ individuals they care for Key themes identified by respondents thus far related to the benefits of speaking to others (whether professionals or fellow carers) who understood dementia and appreciated what their caring journey entailed. Carers also highlighted the importance of being engaged as equal partners with health and social care professionals, and of care which recognised the individuality of the person they care for.

"Letters Life and Love Stories - A Celebration of Caring in Scotland through Music and Words”

Gala Concert and Carers Reception

The Letters, Life and Love Stories Gala Concert to be held at the Royal Concert Hall in Glasgow on 20 January 2014 will pay tribute to the love and dedication of Scotland’s carers and the part played by the many professionals and volunteers who contribute during the carer journey.

This unique partnership event between the Health and Social Care Alliance Scotland (the ALLIANCE), Regular Music and Celtic Connections will celebrate the letters, lives and love stories of many for the 660,000 carers in Scotland and those who support them. The reception and concert will raise awareness of the dedication and love of individuals, families, communities and professionals in caring for our most vulnerable. 

We are delighted that the Deputy First Minister has agreed to address our specially invited audience of inspirational individuals at the pre-concert reception being held at Glasgow Caledonian University. The reception will also see fourteen exhibition stands for a range of national and local third sector organisations and associates in the statutory sector who engage with carers. Participating organisations (full list below) will each undertake a project to collect and present the inspirational stories of those they support and represent in an innovative and engaging way.

Evaluation

The project team have recently established an independent evaluation form which will assist with monitoring the impact of project activity and identifying areas for future focus/development. Initial responses are very encouraging, suggesting that the content of awareness talks is highly relevant to respondent’s practice/educational needs and are ‘very effective’ in meeting the sessions stated goals of;

·        Increasing awareness of the impact of dementia on families and the carer journey

·        Increasing awareness of carer rights

·        Highlighting the importance of person centred responses to health and social care

·        Increasing awareness of the value of carers as equal and active partners in care planning and decision making

 Future Activity

·        Production of carers’ handbook, including carer case studies and key action points.

·        Expansion of reach of awareness talks, both within and across Health boards, Universities and Colleges.

Upcoming talks have been organised for

NHS Greater Glasgow and Clyde Surgery and Anaesthetics Staff NHS Tayside NHS Lanarkshire NHS Highland Robert Gordon University Scottish Practice Nursing Association Conference 2014