Your Story Matters Education and Training Project
Advisory Group
Final Report
20th June 2012
1Background and Context
Life Story Work has been shown to make a valuable difference for individuals with dementia and for those who care in family and formal settings. Life stories allow us to build up a picture and set of values and beliefs around the individual or issue and enable us to develop empathy which is at the core of our humanity.
In the Life Story Network (LSN), we believe that if we focus on the person rather than ‘the problem’ - whatever that problem is – then we are more likely to connect and value the humanity we all share.
In the provision of care and support to individuals with dementia, all too often the focus shifts to behaviours that are considered challenging. This can lie at the heart of ill-informed, unsupportive and insensitive care, contributing to a growing chasm between carer and cared for, where the individual ‘fades’ and the problem of dementia takes centre stage. We truly believe we can address this by focusing on and valuing the life experiences of individuals with dementia, from which we can develop a greater understanding of their behaviours and respond appropriately.
The LSN is uniquely placed to lead on championing the value and impact of using Life Story Work with people with dementia. From this perspective and belief the ‘Your Story Matters’ (YSM) national project was conceived by the LSN and secured funding by the Department of Health under Objective 13 of the National Dementia Strategy (NDS) - ‘an informed and effective workforce’ - to support the delivery of new ways of working to realise dementia friendly communities with well-trained staff.
The aims of the YSM Project were stated as:
- Establish a national network of trainers through the facilitation of a managed learning network utilising action learning, coaching and peer support;
- Provide awareness raising and training on Life Story work and the Human Rights Act and the legal duty placed on public bodies to be compliant with the Act;
- Achieve sustainable transformational cultural change by engaging with leaders at a corporate level in organisations, to encourage providers to collect robust evidence on the effectiveness of life story work;
- Disseminate learning through a variety of media; and
- Conduct an on-going evaluation of the work with our existing research partner, the Social Policy Research Unit at York University.
The YSM Project was formally launched on 2nd November 2011. The value of the programme has been recognised and endorsed at a national level by both the Care Services Minister, Paul Burstow, and the National Clinical Director for Dementia, Alistair Burns:
"Improving education and training on dementia is key to delivering the National Dementia Strategy. Your Story Matters is an innovative project that will make a real difference to the care given to people with dementia. It will help staff and volunteers see every person as an individual, looking beyond their dementia."
Paul Burstow MP
"Life Story work is a fantastic intervention which underscores a person-centred approach to the care of people with dementia, by allowing conversations to be initiated. This is a great, innovative project."
Professor Alistair Burns.
2. Response to the offer of training - demand outstripped supply
From our earlier research and work on the formal launch of the Life Story Network in February 2010, we were aware of the growing interest in this area and pockets of good practice being undertaken on life story work across the country. However, when we launched the YSM Project, we were overwhelmed by the immediate demand and response to the application process for places on our two training programmes for professionals. In addition we offered one pilot course for 10 family carers.
There were 50 places for Training for Trainers, 67 places for the Introductory Course and 10 places for Family Carers.
Demand outstripped supply at a rate of four and a half times for places on our ‘Training for Trainers’ programme andfour times for places on the ‘Introductory Course’.
3.How were delegates selected?
Training for Trainers
Working with members of our Advisory Group the following criteria were used to select applicants for the Training for Trainers courses:
Selected delegates must
- Work within an organisation working with people with dementia
- Be able to train 6-10 people (within a timeframe?)
and have
- a training role or responsibility
- sign up from their organisation
- an external referee
- experience in training
Utilising these selection criteria, we committed to deliver the training programme to as diverse a selection of staff as possible, across a broad range of care settings and organisations, with as wide as possible geographical spread across England. The charts below illustrate how LSN achieved this important objective
Introductory Course
The training workshop was piloted in two settings, a day and respite facility for people with dementia in Merseyside and a residential care home for recovering alcoholics (with dementia related illness) in Manchester. Feedback was positive and the constructive comments on the format of the day resulted in only minor changes for the roll-out of the programme. Again, the objective here was to achieve as wide a geographical, professional and sector spread as possible. The final selection included people from:
•various NHS settings (commissioning, acute care, CMHTs, memory services, in-patient mental health units;
•care homes (voluntary and independent sector)
•voluntary organisations working in the community (such as Age Concern, Crossroads and Alzheimers Society)
•local authorities (including commissioners, social workers and care managers).
Occupational backgrounds included CPNs, OTs, nurses, social workers, clinical psychologists, residential managers, support workers, care co-ordinators, development officers, volunteers and activity organisers.
As the charts illustrate, the course attracted large numbers of applicants from the independent sector and in the final allocations about half the participants came from residential, day and home care support services in this sector.
Carers
Carers were recruited through Uniting Carers, Dementia UK, with the offer of 10 places available at a London venue. Although reimbursement of travel expenses was offered replacement care costs were not and this may have restricted the number of current carers attending. Some carers may also have been put off by thetravelling distance to a London venue. Meeting the needs of cares is something we are keen to address in the next phase of our work.
4. Response to the course from delegates - Qualitative Feedback
The YSM training course was valued highly by all participants of both the Introductory Course and Training for Trainers. The following are a selection of quotes from the evaluation forms completed after each workshop session.
Quotes from the participants on the Introductory Course included:
“I’m leaving the course with a renewed sense of commitment and the possibility of change towards excellence”;
“It has given me the confidence not to worry about how life story should work/ be undertaken. Very well presented and delivered training and information. I would recommend that every carer/health care worker attends a similar session”;
“Thank you for an inspiring and passionate workshop. I’m hoping to develop much more flexible ways of exploring our resident’s hopes, dreams and ambitions for the future”;
“The Human Rights Act is very interesting. I enjoyed all the aspects of the day – excellent course, very interesting and helpful”;
“I felt the session was very well presented. It was presented in a friendly motivational way. I have been on many training courses and this has far been the most engaging and interacting and presented in a relaxed manner”;
“Learning more about human rights act and how it relates to life story work. Hearing other people’s stories about their Life Story work and how they were approaching it. Getting to know more about the Life Story Network and feeling there is support there. I feel inspired by the day, has helped me to reflect and raise areas for discussion with my team and Mangers”.
Quotes from the participants on the Training the Trainers course included:
“Thank you; I feel motivated and raring to GO!!Very interested in doing this as commissioning a new facility and want to create a ‘culture’ from day one that reflects the absolute commitment to Life Story Work”
“Connecting to the Human Rights Act – very valuable of getting the message of ‘personhood’ to our staff”
“An excellent day – although I already work with staff on life history, this made me much more aware of the broader context. Delivering this to staff providing care for residents with dementia will increase and develop their knowledge on all aspects of that care”
“Sharing experiences – not re-inventing the wheel. Seeing the passion – keeping the fire alight! I loved today – what a wonderful opportunity to reflect and share. I loved it – thank you”
“Exciting time to really make a difference and change perceptions! Drive through corporate change”
“Connecting with other like-minded people! Reinforcing my commitment to develop LSW in my own area of work and inspiring other team members and local organisations to also move forwards in this area. Thank you – a fantastic opportunity to gain more confidence and experience in LSW and enable me to empower others in my organisation”
“The narrative interview was very enlightening. Very emotive and a huge learning experience. I found the whole process extremely rewarding, all put together very well. Well done Polly and Anna, keep up the great work”
“An excellent project! Thank you! Hope that you get more funding for the future!”
Quotes from carersincluded:
“To recognise that to create a lifestory from very little evidence (historical or otherwise) is possible providing the person with dementia would like this version of themselves, carer as editor! The facilitators were very responsive to group input. I think we now all understand life story is many things
“I realise I was too focussed on’ Life Story’ interpreting it as whole life story. Now I realise I can focus on some parts of Mum’s life. Her book will not be called ‘My life story’ but instead ‘A bit about me…’l”
5. Did the YSM achieve its stated aims?
5.1 The trainers trained through the project were able to join a private space on the LSN website with resources to help them deliver the training to other people, as well as a discussion forum to share ideas, ask questions and seek solutions. This space was well used. As far as we are aware, this is the only on-line community of practitioners in life story work and we are keen that it is sustained once the “Your Story Matters” project is complete. The budget for the project includes maintenance of the resources up till December 2012.
5.2 We have met the project objective of training up to 500 staff in health and social care, across a range of settings and professional groups and including some carers and volunteers. The model of ‘cascading’ training through other trainers has been successful and we expect the actual number of people trained to be 497, as inevitably some people did not attend on the day because of illness or other difficulty and trainers were unable to offer a second opportunity.
5.3 Achieving sustainable cultural change was an ambitious objective and as such will take longer than the life of this project. However, already there are indications of progress from several organisations that have come back to us as a result of the training to commission further bespoke training for both senior managers and front line staff, based on the early impact of the ‘Your Story Matters’ training. Cultural change can be achieved through an organisation by organisation process and we will pursue this approach in the next phase of development of the LSN.
5.4 We have been invited to present the learning from the project at various conferences and workshops, including the annual Admiral Nurses forum, a PSIGE conference, Sanctuary Care, the Dementia Awareness Campaign week at Liverpool Hope University and the Arts and Dementia Conference at Worcester University. We are presenting a poster display at the Care Homes Congress and have submitted a proposal to the annual Dementia Congress. Our LSN website features news items and resources for the wider public and professional audiences. The project was referenced in a review article by Professor Bob Woods of Bangor University, “The impact of individual reminiscence therapy for people with dementia: systematic review” (Expert Review, Neurother. 12(5), 545-555, 2012).
5.5 The evaluation by the Social Policy Research Unit is in progress and we expect to receive their report by mid-July. Although a high number of delegates completed the pre-course questionnaire, regrettably fewer have followed up with the post course questionnaire six weeks later, despite reminders, so the comparative results may be of limited value. However we have had a high response rate for the evaluation questionnaires on the workshops themselves. These are being analysed and will provide useful feedback as they include the training delivered by other training as well as those delivered directly by LSN trainers and will therefore be an important element of our quality assurance.
6. Impact on LSN
The project has raised the profile of the Life Story Network significantly and this is reflected in the number of people registered with the network: 700 in September 2011 and over 900 currently. It has provided a significant impetus to our development as a Community Interest Company and confirmed that there is a huge appetite for training, information and support resources in life story work.
7. Sustainability
LSN’s early work in establishing the network, combined with the successful delivery of the Your Story Matters Project demonstrates that LSN is able to respond to the growing demand from family and professional carers for leadership, resources and networking in the field of Life Story Work. LSN has developed a unique approach, utilising a Human Rights framework as a key lever in achieving and underpinning high quality, personalised care from both commissioning and provider perspectives.
LSN is the only national network that brings expertise and experience of life story work together to facilitate sharing of best practice with all who want and need to know more.
Our continued commitment to developing,growing and sustaining the Network is underpinned by the following core strategic objectives:
- Achieving a sound and stable financial base
- Leading and contributing to the evidence base on the impact and effectiveness of Life Story Work
- Leading the field in innovation and development of Life Story Work
- Developing creative, timely and cost effective ways of supporting learning and learners
- Influencing policy development and implementation at international, national and local levels
Progress towards these objectives can be evidenced by the following:
- LSN’s Directors are currently working with the Social Enterprise Unit in Liverpool to develop the business infrastructure and secure long term funding.
- LSN has been commissioned by a number of public and private sector organisations to provide bespoke training packages to senior managers and front line staff. These packages build on the learning from the Your Story Matters project by including an introductory session for senior managers and leaders in the organisations. In this way high level support and commitment to embedding life story work is secured, giving front line staff, who then undertake more extensive training, the necessary permissions and endorsements to implement what they have learned. One Trust is already in discussion with us about an extended contract, based on the very positive feedback from managers and staff. We are enhancing our offer to organisations in the form of a membership package that will include:
-facilitation of strategic engagement with partners;
-peer support through action learning sets; and
-bespoke training
as a route to achieving sustainable change.
- LSN has been invited to bid for a similar contract in a third NHS Mental Health Trust, with the possibility of extending the training to staff working with people with learning disabilities.
- LSN has developed the network on a more sustainable footing by improving the web based functionality and on-line resources.
- LSN is developing, with the group of carers who undertook the introductory course, a bespoke training module for family carers that can be included in the package for organisations, but will also operate as a standalone course.
- LSN is a partner with the Social Policy Research Unit and others in aproposal to the NIHR for a research project to measure the effectiveness of life story work
- LSN is using its extensive network of contacts to explore opportunities for further work and to influence policy development. These include the national End of Life Care programme and AqUA in relation to veterans’ health.
Building on the experience, knowledge and skills gained from this project we intend to develop a model that can be applied not only in health, housing and social care but also in the commercial and business sectors, including work with the private sector to help them perform as corporate citizens.
8. Future Planning
LSN has been developed by a core group of individuals with a passion for life story work for four key reasons: