Progress Report is one of those times. Both programmes of work ... last Progress Report in September. 2016, providing ..
Life Changes Trust Progress Report October 2016 - September 2017
The Life Changes Trust was established by the Big Lottery Fund with a National Lottery grant of £50 million to drive transformational improvements in the quality of life, well-being, empowerment and inclusion of people affected by dementia and young people with experience of being in care.
Contents Introduction from the Board Chair ���������������������������������������������� 4 Introduction from the CEO������������������������������������������������������������� 5 People Affected by Dementia Programme��������������������������������11 Care Experienced Young People Programme����������������������������39 Trust Governance, Finance and Funding Awards���������������������69
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Introduction from the Board Chair When the Life Changes Trust was set up in 2013, our vision was for a Scotland where all care experienced young people and people affected by dementia could experience a positive and significant improvement in their quality of life, well-being, empowerment and inclusion.
Many thanks go to our award holders and our Trustees, and staff, past and present, who share a common passion and vision and who work with such commitment and enthusiasm. I would also like to thank the Big Lottery Fund for their continuing engagement and support.
Four years on, and I can honestly say that we are seeing that aspiration become a reality.
The following pages show clearly the fantastic work we have had the privilege of supporting over the last year.
Through our strategic funding initiatives, we are supporting groups and individuals to drive change from the ground up, in a way that upholds the rights and dignity of people affected by dementia and care experienced young people. We are also listening very closely to what care experienced young people and people affected by dementia tell us would make the biggest and most sustainable difference to their lives at the heart of our work will always be their needs, views and well-being.
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Alexis Jay, Chair, Life Changes Trust September 2017
Introduction from the CEO As the Chief Executive of the Life Changes Trust, I particularly enjoy those times when I can reflect on and celebrate the fantastic work that has been happening across Scotland, thanks to the talents and inspiration of the individuals and organisations we fund. Putting together this Progress Report is one of those times. Both programmes of work have advanced impressively since our last Progress Report in September 2016, providing funding that is creating better lives, and ensuring that the voices of care experienced young people and people affected by dementia are central to all that we do. We have funded projects big and small, all across the country and it’s fascinating to witness how some of our smaller funding awards are having an impact as significant as some of our larger ones – our dementia programme’s peer to peer resources and our aspirational awards for care experienced young people are cases in point, more of which later.
We also look very closely at impact, to identify where our funding really is creating systemic change. Champions Boards and Dementia Friendly Communities have been outstanding examples – so much so that both initiatives have been awarded a second round of funding. Everything we do is informed by the expertise and insight of our beneficiary groups and other stakeholders. It is these relationships that have informed – and will continue to inform and influence - our funding plans and decisions. From next year we will report more fully on impact and learning from evaluation of the work we have funded. In the meantime, I hope you enjoy reading about the amazing initiatives, projects and individuals we have been able to support in the last twelve months.
Maddy Halliday, CEO, Life Changes Trust September 2017
It’s also incredibly rewarding to witness projects grow and flourish beyond even our expectations, creating real and transformational improvements in the lives of our beneficiaries.
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The Life Changes Trust The Life Changes Trust was established by the Big Lottery Fund in April 2013, with a sum of £50 million pounds and the remit to facilitate and support real and meaningful improvement in the lives of two key groups of people in Scotland:
We work closely with a wide range of stakeholders as well as care experienced young people and people affected by dementia themselves, listening to what they have to tell us and taking counsel from their expertise and insight.
people affected by dementia, including unpaid carers
Care Experienced Young People
care experienced young people (aged 14-26, primarily in the transition out of care) We believe that meaningful improvement should be measurable in their quality of life, well-being, empowerment and social inclusion. In September 2014 we published our Business Plan for 2014-2023. http://www.lifechangestrust.org.uk/ publications The Business Plan consists of our corporate strategy and our two programme strategies, which set out our approach to funding, with the primary aim of achieving transformational and sustainable improvements in the lives of our beneficiaries.
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As of 31 July 2016, there were 15,317 looked after children and young people in Scotland. Many thousands more have been in or have left care and are part of the larger Care Experienced Community in Scotland. There are several types of placements that looked after children or young people could be in, including being at home (subject to a Supervision Requirement), or away from home - in foster care, in residential care or in a kinship placement, where they are placed with friends or relatives. Many care leavers do well despite the challenges they face, but as a group, they can experience poorer outcomes such as higher rates of early death, including suicide, worse mental and physical health, poorer access to continuing education or training and greater unemployment and homelessness.
It is clear that care experienced young people need the right support, not only when they are in care, but also beyond – through their initial transition out of the care system and also into young adulthood. We are committed to working with care experienced young people, care leavers, practitioners and other professionals in Scotland so that when young people leave care, they have positive life chances and outcomes just like other young people. We fund, and work with, others to ensure that the voices of care experienced young people are heard and listened to, so that they themselves can directly influence policy and practice that affects their lives. Care experienced young people are just as capable of achieving their full potential as other young people. They just need someone to believe in them and support them.
Recent research has suggested that the fear of developing dementia is the biggest age-related health concern for millions of Britons aged 55 and over – more than any other health concern or not having enough money for the future.1 As well as an increase in the number of people receiving a diagnosis of dementia, there is a similar increase in the number of individuals who will take on the role of unpaid carer. In Scotland, there are countless thousands of family carers, and this saves the public purse billions of pounds each year. Both those living with dementia and those who care for them regularly tell us that they have experienced depression and poor mental health, poor physical health, social isolation and loneliness and a loss of income and/or employment.
People Affected by Dementia In Scotland in 2017, it is estimated that 93,000 people have dementia, and though most are old or very old, over 3,200 of them are under 65. By the age of 90, people have an almost 50% chance of having dementia.
1 https://www.iol.co.za/lifestyle/health/mind/ dementia-poverty-and-lonelines-are-biggest-fearsfor-over-55s-10815286
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It is clear that improved support is needed for people affected by dementia, so that they can enjoy better mental and physical health, are included in their communities and are empowered to have a say in how they live their lives. In order to achieve this, we ensure that we hear from and involve people with dementia and their carers, so that we know what is important to them and what they think will make the biggest difference to their lives when we make funding decisions.
Our approach to transformational and sustainable improvement The Trust takes a common approach across both our programmes to support transformational and sustainable improvements in the quality of life and well-being of our beneficiaries. Our approach is personcentred and includes investment in linked initiatives which support complementary progress at individual, relational, community, service and societal levels. For example: we help individuals develop independence and confidence and make positive changes in their lives through relationship support such as mentoring, peer support and befriending we empower individuals to achieve an important improvement in their lives through individual funding awards
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we support the social inclusion, participation and well-being of our beneficiaries through funding for community initiatives, including communities of place and interest we support our beneficiaries to inform and influence improvements to services and policy by funding initiatives which give our beneficiaries the confidence and skills to be active citizens More information about our approach to change is available through our website, including our Corporate Strategy 2014-2023. The Trust also plans to share more information and evidence about our approach from 2017 onwards, through our evaluation reports, complementary insight briefings and events.
Our Approach to Funding Our approach to funding is strategic, informed and flexible. We use a mix of open call funding, targeted funding, collaborative and developmental funding. Our funding decisions are always underpinned by what people affected by dementia and care experienced young people tell us will make the most difference - both for them and into the future - and other supporting evidence, including the wealth of expertise and knowledge of those working with our beneficiaries and published research. By taking this collaborative approach, we can make sure that what we fund has the most sustainable and most positive impact.
Learning and Influencing We strive to be an organisation where learning and continuous improvement are the norm. This means that we can work more efficiently and effectively, in turn achieving greater benefit for care experienced young people and people affected by dementia. We also support our awardees to learn and make improvements to their work as they go, supported by ongoing evaluation.
We support our awardees to undertake proportionate and effective evaluation so that they - and we - can understand what has been achieved and how. We provide a range of evaluation support to our awardees, including funding and guidance through our evaluation framework and online evaluation toolkit (which is also freely available for others to use). www.lctevaluationtoolkit.com Evaluation of our funded initiatives is generating valuable and new evidence, for example, evidence about the benefits of diverse approaches to dementia friendly communities and from empowering care experienced young people so they can work as equals with service providers to identify and drive improvements in support and services. We are committed to actively sharing the learning from evaluation of our funded initiatives to inform and influence wider improvements to policy and practice which will support our beneficiaries in the longer term. We do this in a variety of ways, including publishing and promoting evaluation reports and sharing key findings through social media and events. Our approach to communications and influencing is set out in a framework which is available on our website.
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Total spend 2016-17 Between October 2016 and September 2017 the Trust awarded a total of £5,972,295 in funding.
We provide information about these funding awards below. Please also visit our website to find out more about these and previous funding awards, including evaluation reports where available. www.lifechangestrust.org.uk
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People Affected by Dementia Programme
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Total awards between October 2016 and September 2017: £3,757,608
Geographical Dementia Friendly Communities
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Other Projects
Dementia Friendly Communities of Interest
Peer to Peer Resources Come on In Taste, Smell and Dementia Self Management Multimedia Toolkit British Sign Language online awareness raising videos Video installation and series of pictures Self-management and resilience resources Core Principles for Involving People with Dementia in Research (reprint) Living and Learning with Dementia film
£9000 £7000 £7000 £7000 £7000 £7000 £646 £4,482
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Overview The Life Changes Trust published its ‘Strategy for Creating Better Lives for People Affected by Dementia’ in January 2014.2 This strategy sets out five priority areas for investment. These were chosen based on issues raised with the Trust by people living with dementia and unpaid carers. I live in a place that suits me and my needs I am able to be as independent as possible I get the help I need when I need it I feel safe, listened to, valued and respected I am empowered to do the things that are important to me Over the past three years, the Trust has invested across all five priority areas and is now gathering together the learning that is being accumulated through practice, evaluation, and the testimony of people living with dementia and carers.
2 http://www.lifechangestrust.org.uk/our-publications
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In the coming year, the Trust will begin collating and cross-referencing this learning in order to demonstrate what a holistic approach to dementia should look like - an approach that has the person with dementia and the carer at its heart. We believe that this practical approach will be useful to – and can be adopted by - a wide range of service providers, third sector organisations, communities and individuals. This Progress Report covers the period October 2016 to September 2017. It outlines the progress that has been made in Scotland as a result of funding from the Life Changes Trust. The Trust’s People Affected by Dementia Programme has funded work across the whole of Scotland. For more information on where the Trust has funded so far, see the Trust’s funding map.3 Every three months, the Trust brings together the projects it funds so that learning can be exchanged, relationships built and joint working developed. This is an essential element of the Trust’s work and is helping build a solid, shared understanding of what makes a fundamental difference in the lives of people living with dementia and carers.
3 http://www.lifechangestrust.org.uk/trust-funding/project-map
This year we have been privileged to fund work that strengthens the voice of people living with dementia and carers. One funding award4 was made to the Dementia Engagement and Empowerment Project Network (DEEP). DEEP brings together groups of people with dementia from across Scotland – and the rest of the UK – and provides support to these groups so they can influence services and policies that affect their lives.5 In 2017, DEEP supported people with dementia to organise three gatherings to which they invited other people with dementia. These were held in Inverness, Hawick and Edinburgh. To read more about these see the DEEP website.6 The Trust also funds the tide (Together in Dementia Everyday) network which empowers carers of people with dementia, helping them recognise that they are experts by experience. By working closely with carers, tide helps them understand that, as experts, their voice matters, and can be used to bring about real change.7
4 Jointly with the Joseph Rowntree Foundation and Comic Relief 5 http://dementiavoices.org.uk/ 6 http://dementiavoices.org.uk/?s=gatherings 7 http://tide.uk.net/
In the past year, the Trust has given out small grants so that people with dementia and carers can produce peer-to-peer resources, i.e. resources that will help other people with dementia and carers. ‘Driving and Dementia’8 was written by James, a person who lives with dementia who wanted to share his experience of giving up driving because he thought it might help other people with dementia who have to do the same. ‘Come On In’9 is an attractive pocket-sized booklet written by the residents of the Campbell Snowdon care home in Bridge of Weir, and their families. Its aim is to help friends and family make the most of visits and time spent with care home residents. We continue to work with other funders, either jointly or in parallel, such as the Baring Foundation, the Joseph Rowntree Foundation, Comic Relief, the William Grant Foundation, and the Big Lottery Fund UK. By working together we maximise investment and impact.
8 http://www.lifechangestrust.org.uk/people-affected-by-dementia/driving-and-dementia 9 http://www.lifechangestrust.org.uk/people-affected-by-dementia/come
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The Trust’s People Affected by Dementia Programme will soon reach its halfway point. From 2018 until 2023, the Trust’s focus will be twofold: first, to further fund work where there is deeper learning to be obtained; and, secondly, to carry out work that will embed learning and
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promote good practice and positive policy development at a local level, in order to ensure that the lives of people with dementia and unpaid carers are fundamentally improved for decades to come.
Priority 1 Enable people affected by dementia to live in a place that suits them and their needs. People living with dementia and their carers are vocal about the importance of being able to live in their own home for as long and as independently as possible. This also means that community ties can remain intact, so that people with dementia and carers stay connected with the people and places that are familiar and important to them, where they can participate in community life to the extent they are able.
Many people who are supported to remain in their own home and be part of their own community enjoy better mental and physical health - they do not have to go through the stress of losing their homes and being moved to an unfamiliar environment.
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Dementia Friendly Communities
In 2015, the Trust funded fourteen Dementia Friendly Communities (DFCs) across Scotland. Dementia Friendly Communities are places where people with dementia and their carers are included, empowered and supported. These communities help those whose lives are affected by dementia to remain integrated in society and do the things that really matter to them.
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Some Dementia Friendly Communities are geographical communities, relating to a specific location like those in the Orkney Islands or Dumfries and Galloway. Others are communities of interest that bring people together because they are interested in similar activities, for example, sport, art, walking outdoors or dance.
After another open call for applications earlier this year, the Trust decided to fund a further fourteen Dementia Friendly Communities across the country, with an investment of £2 million. Ten of these communities have been funded for three years, with four being awarded a one year development grant. As there is an overlap between our existing and new DFCs, we expect that mentoring relationships will develop between projects that have similar bases of interest or geographical similarities. In September 2017, the Trust held an event in Perth to introduce our new DFCs to our existing projects. Our first cohort of DFCs have been producing six-monthly evaluation reports10 that allow us to produce regular learning reports. Our latest cohort of DFCs will also do the same. In this way we can look closely at how these communities can be grown and sustained, and the principles that must be followed to make them effective. Dementia Friendly Communities work best when:
they adopt a social model of disability, rather than a medical model they take an assets-based approach that identifies and mobilises individual and community ‘assets’, rather than focusing only on problems and needs people with dementia and carers have a significant say, that places them at the heart of the community so they can shape it they are multi-generational they provide appropriate training to staff and volunteers that goes beyond awareness raising they enable people with dementia and carers to do what really matters to them they meet with other communities so they can learn from each other they collaborate with others and work in partnership to maximise use of resources and skills they mentor new communities, who mentor new communities
10 The first and second reports can be found at http://www.lifechangestrust.org.uk/our-publications. The third will be published in the autumn.
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Dementia Friendly Communities projects, Perth September 2017
Personal Story (Dementia Friendly Community) We have seen an excellent example of cross-generation care, friendship and connection between Norma*, a resident in a local care home who has dementia, and Caitlin*, a young girl excluded from mainstream education due to behavioural issues. Since volunteering through our music project at the care home, Caitlin has taken a special shine to Norma, catering to her every need – a drink, a warm blanket for her legs, telling the staff when Norma is in discomfort, and settling for nothing but the utmost care and love for Norma. There is visible mutual understanding between these two friends: their relaxed body language, hand holding and eye contact. Caitlin often sits with her arm around Norma ready to rub her back as her cough becomes more apparent every week. During a particular session Caitlin came to a staff member and said “I think Norma is finding it hard to breathe”, with tears in her eyes. They both went to the nurse on duty, Caitlin explained the situation eloquently and the nurse went to Norma straight away. The nurse (with Caitlin by her side all the way) made Norma more comfortable to allow her to enjoy the rest of the music session, to which she responded with her common phrase: “spot on”. * Not real names
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Earlier this year, four DFCs – An Lanntair (Stornoway), Dementia Friendly West Dunbartonshire, Paths for All, and Dementia Friendly Communities Helmsdale – gave presentations about their work at the Alzheimer Disease International Conference in Kyoto, Japan, and the Trust also gave a presentation on our perspective of funding dementia friendly communities.
In September 2017, Aberdeen FC Community Trust - a Trust-funded DFC - was named Best Community & Social Responsibility Project at the European Club Association Awards for their Dementia Friendly Well-being project. We are delighted that projects like this are being recognised Europewide.
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Personal Story (Dementia Friendly Sports Community)* I’ve actually got a couple of problems – I’ve got Parkinson’s disease, I had heart failure, and I’ve got early onset dementia. So I hit a kind of low point. I was really down for a while, not probably realising I was down. I had a few folk coming out to see me – different nurses and different people. They mentioned maybe I should try to join a group. I just didn’t fancy the idea of it. I’m a bit like that. My wife was talking to somebody – I can’t remember how it all came about – and she mentioned this group and she got Craig’s number. So I phoned Craig, or she phoned Craig, I’m not sure who but one of us phoned anyway. And he said come along on Tuesday. I went along on Tuesday and I wasn’t sure what I was really coming to. Since then, that’s over a year or maybe two years or whatever, I’ve been coming ever since and I look forward to it. I try not to have anything happening on a Tuesday so I can manage to come to this. I like the people, like Craig and Donny and Michael, and I like all of the men and I like sport. It gives you something to look forward to – I think it’s brilliant. I feel I am a member and a helper. I feel like there’s a lot of people, like Wullie that I sat next to today, who is probably really one of the worst in the group. He really struggles and I feel I try and always help him, look out for him…I like to think that I’m helping a wee bit, and at the same time I’m learning from it and enjoying it. Everyone gets the chance to say something or express something, whatever…it’s never the case of “you’re not saying that…or not doing that”. You’re left to your own opinion and everyone has their say…it’s amazing some of the men that’s come in the last wee while. I can even see a difference in them. Likes of Tommy – he was really struggling and getting mixed up with things. I see a massive difference in him – his wife would agree with that. I can see it. He’s very knowledgeable as well. You’re made to feel really welcome – there’s no wee cliques, which you can get in a lot of places. I (would tell others) to come and try it…what’s the worst thing that can happen? I’d give it 10 out of 10. * Names have been changed
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Summary of Awards Dementia Orkney This funding award will be used to provide a range of services and social activities which promote health and well-being, resilience and inclusion. This will include a Dementia Hub where people living with dementia can go for information and advice. Dementia Orkney has been developed by Age Scotland Orkney, NHS Orkney and Dementia Friendly Orkney.
Dementia Friendly Pentlands This one year project is a partnership between five organisations, and will establish a new dementia friendly community on the outskirts of Edinburgh, in Balerno, Currie and Juniper Green. The aim of the project is to build communities that are safe, inclusive and resilient enough to support people living with dementia, their carers, families and friends.
Stirling and Forth Valley Participatory Neighbourhoods This partnership project will involve people with dementia, their families and fellow residents, to create ‘participatory neighbourhoods’ to enable people living with dementia to remain included and active in their local communities. Partners include Artlink Central, the University of Stirling, Stirling Council and NHS Forth Valley.
Dementia Friendly Highland This is a partnership between Dementia Friendly Communities (DFC) Helmsdale, Age Scotland and NHS Highland Public Health. It is based on a dementia inclusive model already developed and used by DFC Helmsdale, which ensures that people with dementia and their families can continue to participate in things that are meaningful to them.
Dementia Friendly Kelso This project is based in Queens House residential home, and aims to improve motivation and well-being for people living with dementia and their carers in Kelso. Queens House will develop a dementia friendly community resource centre within the building that is accessible to people living with dementia and not just those who live in Queens House.
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Dementia Friendly Uists This project, run by Tagsa Uibhist, a voluntary organisation in the Southern Isles of the Outer Hebrides, will focus on raising awareness of dementia, reducing stigma, and enabling people living with a diagnosis of dementia to live well within their own community. Tagsa Uibhist will also run a dementia resource hub and manage a range of services.
Dementia Friendly Banchory The Forget Me Not Club in Banchory will use the one year funding to develop and strengthen their dementia friendly activities, and increase the number of people they can support in the area, as well as acting as a catalyst for Banchory as a whole to become dementia friendly.
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Dementia Friendly Care Homes Network, East Ayrshire This project aims to develop and grow sustainable dementia friendly communities with and for people living with dementia in care homes in East Ayrshire and those who support them. They will work to strengthen relationships between people living in care homes and the wider community to improve inclusion and community connections.
Dementia Friendly Deaf Community – British Deaf Association (BDA) Scotland This project will work with Deaf people who have dementia and their carers, enabling them to share and receive information, knowledge and experiences about living with and managing dementia through British Sign Language (BSL). BDA Scotland will also create a dedicated dementia webpage with accessible BSL videos.
Edinburgh Leisure
Regional Screen Scotland
The primary aim of this project is to develop health and well-being activities for people affected by dementia across the city. Edinburgh Leisure will develop a range of physical activities for people living with early onset and mild to moderate dementia and their carers, so that they can become - and remain physically active.
Regional Screen Scotland specialise in community and local cinema provision. The project, ‘Screen Memories Scotland’ will develop an approach for using film to promote inclusion and engagement. This one year project will deliver activities such as reminiscence sessions, dementia friendly screenings and online resources.
Glasgow Film Theatre (GFT)
Scottish Ballet
The GFT will offer monthly ‘Movie Memories’ film screenings at its cinema in Central Glasgow, as well as other multi-arts events across the city. The GFT programme will have inclusive and friendly screenings, dementia friendly venues and dementia aware staff and volunteers.
This funding will enable Scottish Ballet to set up a programme of dementia friendly dance based activities for people living with dementia, their carers and families across Scotland. The programme will include weekly dementia friendly intergenerational dance classes and participants will be invited to attend performances and meet the dancers.
GFT Movie Memories Day at Dundasvale Hall: Singin’ in the rain. Photo by Ingrid Mur.
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Table Tennis Scotland This funding will be used to ensure that all Community Table Tennis projects are dementia friendly. There are already dedicated over-50s groups across Scotland and the funding will enable Table Tennis Scotland to purchase equipment for around 50 further sites, with sheltered housing units, community centres and care homes receiving a table and training for staff.
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William Grant Foundation, Added Value Funding In April 2017, the William Grant Foundation provided additional funding of £100,000 to support eight Trust funded Dementia Friendly Communities that were already making a difference across Scotland, to add further value to the work they were already doing.
We were interested in how people can be supported to live well with dementia, and believe that community connections and relationships are key to this. Dementia Friendly Communities are therefore a good place to start for our Foundation, as we begin funding projects in this space. Partnering with the Life Changes Trust and the projects they already fund around Scotland gives us a fast track to learning about what’s already happening, while giving several effective organisations the chance to try out some new ideas with our funds.
Nick Addington, Chief Executive of the William Grant Foundation
The following awards were made: Aberdeen FC Community Trust An Lanntair Kirriemuir and Dean Area Partnership Dementia Friendly Communities Helmsdale CIC Festival City Theatres Trust CVS West Dunbartonshire Paths For All Sporting Memories (Scotland) CIC
£10,734 £10,000 £11,292 £11,292
£14,985 £13,000 £14,988 £15,000
Housing and dementia In April 2016, the Trust provided funding for engaging with a wide range of stakeholders, to undertake a comprehensive review of the housing support available for people affected by dementia, as detailed in our last Progress Report. One of the key aims of the project was to produce a report that provided a comprehensive overview of the current housing situation for people affected by dementia, including the existing range of housing services, support and options, together with potential solutions. The report was published in spring 2017.
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The report identified the important role suitable housing plays in the life of the person affected by dementia, including family, friends, neighbours and practitioners. It revealed that there are very few housing options or housing policies that are specifically focussed on providing accommodation for people with dementia in Scotland. It also contained recommendations for policy makers, for housing sector organisations and for health and social care partnerships. You can read the report here: http://www.lifechangestrust.org.uk/ sites/default/files/Being%20Home%20 -%20Full%20Report.pdf
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Another key aim of the project was to organise a national housing and dementia summit for people from across Scotland to share the learning, discuss funding opportunities and discuss a national action plan to address gaps and opportunities. The event took place in summer 2017 and involved presentations from housing and architectural specialists. There were also powerful presentations from two couples, giving valuable insights into housing provision from the perspective of families living with dementia. This work sits alongside the Dementia Enablement Project being piloted by Care and Repair in Aberdeen, Angus, Fort William and Skye & Lochalsh. Learning from the housing research and the practice of Care and Repair are helping us better shape our understanding of the important role of the home in the life of a person with dementia and their family.
Priority 2 Protect and promote the independence of people affected by dementia Maintaining independence for as long as possible can have a profound and positive effect on the overall wellbeing of people living with dementia and carers. Without the right support, independence can be eroded, which can in turn lead to reduced social interaction and a loss of confidence, both of which can impact on mental and physical health. It is therefore important that we look at independence as a significant factor in supporting the empowerment and well-being of people affected by dementia.
Simple things like reading timetables, complex ticketing systems and machines or lack of signage can be challenging and confusing, which too often means that people with dementia don’t go out at all. If the growing number of people living with dementia are to maintain their independence, then transport and related services need to respond and develop in ways that are informed by real-life experience of people with dementia.
Mobility and Dementia Getting out and about and being involved in community life is an important part of maintaining independence and living well with dementia. However, the challenges faced by people with dementia mean that they may find travel daunting. Dementia affects so much more than memory and travel can be noisy, busy and disorienting.
“Signage on bus stops… numbering can be confusing.” “Buttons I have to press on doors and toilets on trains are inconsistent and confusing.” “Sometimes timetables use 12hour clock and some 24-hour clock – confusing.” “Cheaper tickets are online – discriminatory!”
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Upstream In March 2016, the Trust funded a mobility and dementia project, led by Upstream11, an arm of the ESP Group, as detailed in our last Progress Report. Upstream looked at a range of issues, such as accessible transport, rural challenges, community transport, dementia friendly transport, and how people with dementia are assisted in planning their travel. A conference was held on 7 December 2016 at which findings were shared and discussed. A final report ‘Travelling Well with Dementia’ was published in March 2017. This report is full of insights and recommendations from people with dementia and will be used to influence longer term improvements. You can read the report here: http://www.lifechangestrust.org.uk/ sites/default/files/Upstream%20 Final%20Report.pdf Upstream Phase 1 helped understand the key role of transport in maintaining the independence and confidence of people affected by dementia. It has also provided a mechanism for people affected by dementia to provide insight and guidance for better ways of delivering transport.
11 www.upstr eam.scot
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In May 2017, the Trust decided to fund two further ESP projects, one as an extension of the work already carried out by Upstream (Phase 2), and one called Onwards. Phase 2 of the Upstream project will provide training and models for service improvement for transport providers, to deliver long term change. Onwards takes a specific challenge, the transition away from being able to drive a car, and will develop a service to make this a positive process. These are two mutually supportive projects - Upstream and Onwards together will provide a powerful contribution to making a transport system which enables people living with dementia to live independent and confident lives and do things that are important to them.
Upstream Phase 2 We have learned from key findings in Phase 1 that the main barriers to travelling well can include loss of confidence, feelings of anxiety or being unsafe, confusing travel processes, and a lack of understanding among provider staff of what it’s like to travel with dementia.
Phase 2 will focus on delivering training to raise staff awareness of dementia, so that services and systems can be improved. The project will also develop a toolkit to support wider discussion among people living with dementia and carers so they can take recommendations to mobility and transport providers most relevant to them on a local level. Upstream will also develop the ‘shared experience’ model of learning which helps transport providers and people affected by dementia to learn together about the impact of travelling with dementia, and will produce a resource that explains the rights of people with dementia when travelling.
Onwards The Scottish Government has estimated that almost 18,000 people will be diagnosed with dementia this year. As a result, many will be told that they can no longer drive. This can have a massive impact on confidence, well-being, independence and mobility. But despite the challenges, people can live well with dementia without a car.
‘Onwards’ is a 16-month project which aims to develop practical solutions to keep those living with dementia both mobile and connected to their community when they have to give up driving - whether this is a car sharing scheme, adjustments to public transport or a community mobility programme. These solutions will be co-designed by people living with dementia, drawing on their own direct experiences. Onwards will begin by focusing on the driving assessment process. They will look at ways to support people in the assessment stage to better understand how the system works, and explore other modes of transport, so that the transition away from driving is easier when it comes. They will also develop a resource for professionals so that they know where and how to direct people when they are told to stop driving. Additionally they will develop resources to support use of public transport, for example how to access national transport programmes such as the National Entitlement Card (NEC) for concessionary travel.
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Personal Story My dementia did cause me to have driving problems, among other difficulties, such as attempting to drive down the wrong side of a dual carriageway several times. I was positioned to turn right, indicating, ready to proceed, and it was only due to oncoming drivers flashing their headlights at me, that I was prevented from making that potentially fatal manoeuvre. Had they not come along at that time, I would have been off down the wrong side. I couldn’t understand where I had gone wrong. I was also having trouble at roundabouts. When I approached and read the directions, I would forget in an instant where I had to go. It all became clear when I was diagnosed with dementia. You have a duty to report a medical condition, which might affect your driving ability to the DVLA (the regulating body in the UK for drivers), otherwise you are in breach of the conditions of your licence. After coming to terms with my illness and receiving medication, I felt capable of driving, now that I knew what was wrong….. I persisted with applying to continue to drive. I sat a test arranged by the DVLA and passed it. I was given a licence to drive and continued to drive. I no longer undertook long journeys, as I felt it was not in my, or other road users’, interests to get overtired. When my licence expired, and I was accident free, I applied to renew my licence, fully expecting (and rightly so) to sit another test. I heard nothing for six months, and on a Christmas Eve I received a letter from the DVLA saying they were withdrawing my licence. Why couldn’t they have waited another day, especially after keeping me hanging on for six months? What a Christmas spoiler. Dr James McKillop
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Life Changes Trust
Priority 3 Support work that will guarantee that people affected by dementia get the help they need when they need it In order to know what people with dementia and their carers need, want and aspire to, we need to hear from them. The Life Changes Trust believes in putting the voices of people with dementia and carers at the heart of our funding activities.
tide (Together in Dementia Every Day) In 2015, alongside the Joseph Rowntree Foundation and Comic Relief, the Life Changes Trust funded the introduction of the DEEP Network to Scotland. DEEP stands for Dementia Engagement and Empowerment Project.12 The DEEP network supports the establishment of independent groups which are run by and for people living with dementia. These groups are supported to come together in their local area to set their own policy agendas for influencing local services and systems, so that they can get the help they need when they need it.
We believed that it was equally important to have a similar empowering network for carers of people with dementia in Scotland and so we looked to the tide network, which was already operating south of the border. tide, which means ‘Together in Dementia Every Day’, is a national involvement network for carers and former carers of people with dementia, hosted by the Life Story Network CIC. There are around 670,000 unpaid carers of people with dementia in the UK, saving the economy an estimated £11.6 billion per year. Three out of five of us will become carers at some stage in our lives and one in ten of us is already fulfilling some sort of caring role. Many carers of family or friends with dementia feel they receive insufficient support from health and social care services, leaving them feeling isolated, burnt-out and unable to look after their own well-being.
12 www.dementiavoices.org.uk
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It is vital that carers themselves are given the opportunity to speak up for themselves and come together to raise their profile, voice their needs and influence better quality of care and support at all levels. For this reason, in March 2017, the Life Changes Trust decided to fund a tide network in Scotland.
This new network will bring together carers of people with dementia, not only to build their own peer support systems, but also to give them the tools and confidence to voice their needs and influence government, policy and practice – at local, regional and national levels - that will improve their experiences as unpaid carers as well as the services available to those they care for. This is a parallel funding initiative with the Big Lottery Fund UK which currently funds the tide network in the north of England.
Priority 4 Create a culture in Scotland where people affected by dementia feel safe, listened to, valued and respected
People with dementia and carers in Scotland need to be supported to have a stronger voice and to feel that their opinions and experiences are listened to and respected.
Writer in Residence The Life Changes Trust has provided funding for a ‘Writer in Residence’, Caroline Brown, who is spending time with care home residents who have dementia and their families.
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Life Changes Trust
Caroline has been in two care settings in Scotland for short periods over several months. She has talked with, and listened to, the residents and staff, capturing the things that matter to them as they live in, work in or visit a care home. As she spends time, people talk about their lives, their experience of the care home and their families. Caroline will turn these stories, reflections and insights into a book and other useful resources, which we hope to see published in spring 2018.
Priority 5 Empower people affected by dementia so that they can do the things that are important to them
Empowerment can take many forms but we have found that a crucial element for people affected by dementia is being able to share their story and being able to do things that will benefit them and others in a similar situation. Making this type of meaningful contribution can be very empowering.
Peer to Peer Resources We believe that people living with dementia and carers in Scotland have an enormous amount of knowledge and helpful information to share with each other. This ‘person with dementia to person with dementia’ and ‘carer to carer’ support is sometimes called ‘peer support’.
The booklet has been read by well in excess of 70,000 people in Scotland alone. It has been translated into Czech, Welsh, Chinese, French and Japanese. Due to the success of the Dementia and Sensory Challenges booklet, we are now funding further peer-to-peer resources through which people with dementia and carers can produce a booklet or video (or something similar) to raise awareness of a particular issue, offer advice or share learning that will help others.
One of the most influential projects we funded in 2015 was a booklet produced by a person with dementia, Agnes Houston. Her ‘Dementia and Sensory Challenges’ booklet has been used by other people living with dementia, carers, professionals and others and has influenced the re-writing of training and guidance for professionals in a number of organisations.
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So far, we have funded: Come On In (Campbell Snowden House/Care Inspectorate): This guide was written to help friends and family of people living in care homes make the most of their visit and their time spent together. British Sign Language online awareness raising videos (British Deaf Association (BDA) Scotland): BDA Scotland has produced five British Sign Language online videos to raise awareness for Deaf people of the different types of dementia and where information and support can be accessed.
Core Principles Involving People with Dementia in Research (University of Edinburgh/Scottish Dementia Working Group (SDWG)): These core principles challenge researchers across all disciplines to re-consider how people with dementia are involved and valued in research.* Living and Learning with Dementia film (SDWG): The film demonstrates ipad/tablet skills that viewers can try and discusses the importance of friendships and socialising for people living with dementia. Top Tips for Living Well With Dementia (SDWG): a range of tips for living well with dementia that are tried and tested by members of the group.* * Funding was for a further print run.
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Life Changes Trust
We will continue to fund resources like these and several more are ‘in the pipeline’ including: Taste, Smell & Dementia (Outside the Box) Self-Management Multimedia Toolkit (DEEP Alumni Group/ Innovations In Dementia) Video Installation/pictures (Cormorant Films and Edward McLaughlin) Self-Management and Resilience Resources (National Dementia Carers Action Network - NDCAN) A checklist and a local directory for carers that provide guidance about where to access crucial services and organisations that provide information and advice, e.g. money and legal matters (Conference for Carers by Carers, Glasgow Steering Group)
An online Urdu/Punjabi video, created by people living with dementia and carers, which highlights major concerns, myths and the difficulties faced by carers, to give people an insight of living with dementia (MILAN Senior Welfare Organisation Ltd) An online ‘How to’ video to advise other people with dementia, carers and organisations on how to set up a Come and Sing Dementia Café or similar (Cranhill Parish Church).
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From ‘Come On In’ “The whole hour I visit, Dad sometimes dozes and doesn’t talk a great deal. I used to worry about it, but now I understand that it’s okay to sit quietly and watch the television together. It’s okay to just be together for my visit.” “I used to ask my sister what she had for lunch, she often couldn’t remember, so instead, I will ask the staff when I visit, or look at the menu and talk about what was on for lunch instead, rather than distress her with trying to remember recent things.” “My two neighbours visited at the same time a musician was performing. They were encouraged to join me. We had a great time.” “I was upset the last time, I came back with my relative and I had to visit the bathroom, they left without me saying goodbye. I like to walk them to the front door, as I would have at home, it’s important for me to say goodbye.” “I have had my day disrupted when my visitor came in and I had to leave my group card game. I was embarrassed as it didn’t just affect me, but the other players. I’ve asked my daughter to telephone me first as she visits regularly.”
Conference Bursaries The Life Changes Trust believes it is important that conferences and seminars about dementia are attended by people living with dementia and carers. It is important that people with dementia and carers are given their rightful place at conferences about matters which affect their lives. This is why the Trust has previously funded a number of conference places and has written reports on how people have benefited from being at such conferences. Due to overwhelmingly positive feedback from recipients of the previous bursaries scheme, the Trust decided to allocate a limited sum of money to fund conferences and other events bursaries in 2017/18. The Trust funded bursaries for ten people to attend the Alzheimer Europe Conference in Copenhagen in October/November 2016 (three people with dementia and seven carers). We also funded three places (two carers, one person with dementia) at the Alzheimer Disease International (ADI) Conference in Japan in April 2017.
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Life Changes Trust
Care Experienced Young People Programme
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Total Awards between October 2016 and September 2017: Allocated: £5,505,324 Spent: £2,214,687
Champions Boards Total allocated: £2,475,000 Total spent in reporting period: £1,755,524
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Life Changes Trust
Workforce Development
Who Cares? Scotland
Allocated £1,000,000 Spent: £28,326
Allocated £1,406,324
Empowerment Grants Total allocated: £399,000 Total spent in reporting period: £109,854 Aberlour Child Care Trust
£4,450
Scottish Churches Housing Action
£6,502
Articulate Cultural Trust
£9,965
Stirling Council
£5,886
Barnardo’s Highlands
£5,000
Trust in Fife (The Oasis Project)
£4,004
Cyrenians
£7,500
Voice Of My Own (VOMO)
£6,499
Dean and Cauvin Trust
£5,000
Xchange Scotland
£8,900
Falkirk Council (Tremanna Children’s Home)
£3,396
Y Sort It
£9,790 £5,500
Move On
£8,107
Young Men’s & Young Mums Group, East Lothian Council
Options in Life
£7,000
£7,795
Outfit Moray
£4,560
Youth Transition and Support, South Ayrshire Council
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Peer Mentoring Total: £199,722
Aspirational Awards Total allocated: £225,000 Total spent in reporting period: £50,261 Aspirational Awards Round 1: £22,944 Aspirational Awards Round 2: £27,317
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Life Changes Trust
Overview This has been another exciting and productive year for the Care Experienced Young People programme as we have continued to build on our previous work and covered significant ground in our efforts to effect transformational and sustainable change. It is care experienced young people themselves, however, that must take credit for so much of what has been achieved over the past year. While the Trust has played a significant part in creating the right conditions for change, it has been their passion, drive, commitment and sheer hard work that has led to the kind of changes we hardly dared dream about when we started out.
Putting young people at the heart of all that we do and genuinely standing alongside them to view things from their perspective is core to our approach. This has underpinned all of our efforts and has been fundamental from the beginning. This is what makes the difference and we are seeing a growing confidence among so many of the young people involved in the projects we fund. An increasing number of those who work tirelessly to support young people and advocate on their behalf are genuinely listening to their views and getting right behind their efforts to improve things. This Progress Report, which covers the period between October 2016 and September 2017, details the individual projects we have begun to fund during this time period and the impact they are having on the lives of the young people they engage with. We have five priority areas for funding - you can read more about them in our Programme Strategy13, published in January 2014.
13 http://www.lifechangestrust.org.uk/sites/ default/files/publications/CEYP%20Programme%20 Strategy%20Summary%20for%20website.pdf
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In this progress update, we have tried to show the interconnectedness of our projects and how they can support several of our priorities simultaneously, even though some sit predominantly under one priority area: Priority 1: Care experienced young people are loved, respected, valued, and listened to (VOICE) Priority 2: Care experienced young people are in safe and settled accommodation (HOME) Priority 3: Care experienced young people have access to support and guidance when and where they need it (CARE & SUPPORT) Priority 4: Care experienced young people have increased access to education, training and employment (CHOICE & OPPORTUNITIES) Priority 5: Care experienced young people lead healthy lives (HEALTH)
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Life Changes Trust
In line with our priority areas, the voice of care experienced young people has continued to be a focus of our programme and funding, for example for Who Cares? Scotland, Champions Boards and our own Advisory Group of care experienced people. Our funding has provided important opportunities to give a platform to and amplify this voice. The Trust is a dedicated supporter of relationship-based and personcentred practices, both of which underpin our whole approach and are central themes in the projects we fund. This commitment led the Trust to develop a 5-day systems leadership programme titled ‘It Takes a System to Change a System’ which is part of our Workforce Development initiative. We undertook this 5-day leadership programme as a way of supporting the wider workforce to develop a collective vision for the care system. By sharing, understanding and reflecting as a group on what the care system could look like, the group explored what it could do to implement this vision.
Over the past year we have continued to support our funded projects and grow the learning and improvement networks that provide space for them to share and collaborate, such as the Champions Board Learning and Improvement Network and our Peer Mentoring Network. These networks are valuable spaces to accelerate learning between the Trust and the projects we fund, as well as providing additional benefits such as informal peer support and partnership working between projects. We are also beginning to see encouraging signs of policy and practice change at local and national level.
The development of new funding initiatives has been ongoing throughout the past year and has recently seen the Trust focus on our ‘Home’ and ‘Creative and Active Lives’ initiatives. We are excited to see these initiatives launch over the next year and look forward to working with partners to move to the next phase of funding. As we reflect on the progress made in the last year and we look ahead to the next one, we at the Trust find ourselves ever more ambitious, inspired and motivated to achieve the transformational and sustainable improvements our care experienced young people deserve.
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Priority 1 Care experienced young people are loved, respected, valued, and listened to
The Trust believes it is vitally important to support care experienced young people to have a stronger voice and to ensure that what they say – their experiences, opinions and insights – are listened to, valued and respected. In this way, and with this support, care experienced young people themselves can influence policy, practice and decisions which affect their lives.
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Life Changes Trust
Champions Boards There is no question that outcomes for care experienced young people, particularly those making their first steps towards adulthood and independence, could be significantly improved. While a growing concern about poor outcomes has led to some major legislative and policy developments at a national level, we believe there also has to be scrutiny around delivering local outcomes for care experienced young people, based on their experiences of what works for them and what matters to them. Champions Boards are forums which create a unique space for care experienced young people to meet with key decision-makers, service leads and elected members to influence the design and delivery of services which directly affect them. Champions Boards are providing a platform at local level for young people to hold Corporate Parents to account, and use their lived experience to influence long-term improvements in services and supports.
They can also be a useful and productive vehicle for encouraging Corporate Parenting representatives to collaborate and set challenging improvement goals, articulated by the young people themselves. In 2016, the Trust funded a first phase of ten Champions Boards across Scotland, with a total investment of £2.3 million. Plans were also developed during 2016 to fund up to a further ten Champions Boards, and in 2017, the Trust pledged a further £2.5 million investment.
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From this funding, so far a further nine Champions Boards have had funding confirmed, bringing the total number of Trust Funded Boards to nineteen. Those funded in the second phase are:
One of the unique developments we have introduced to all of our funded Champions Boards, as a condition of award, is to incorporate an ‘individual awards’ scheme in their action plans.
Glasgow (£224,807)
Through our own experience of providing individual awards (our own pilot of Individual Awards in 2014 and our ongoing Aspirational Awards scheme, as outlined in Priority 4), we know that directly giving care experienced young people a budget to spend on something that matters to them can be transformational, not only in practical terms, but also in terms of empowerment and increased confidence.
Inverclyde (£225,000) Moray (£223,707) North Lanarkshire (£180,145) Perth & Kinross (£225,000) South Ayrshire (£224,200) Stirling (£219,600) West Dunbartonshire (£224,167) West Lothian (£209,043)
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Life Changes Trust
Champions Boards The purpose of a Champions Board is to tackle a lot of stigma and inequality surrounding Care Experienced Young People. It’s finding the right people and the right places to help make the right decisions. It’s about changing how people are viewed being in care. It’s about changing the fact that people don’t have a sense of belonging. It’s about changing the fact that people feel ignored when they are in care. It’s about changing the fact that there’s a difference… coz there isn’t a difference. We want to eradicate people feeling they can’t achieve their greatest potential and be the people that they want to be.
Young Person on the North Lanarkshire Champions Board, TNT (Today, Not Tomorrow)
I think that when we come here, we come as equals. Nobody comes with their job titles, everybody comes with their thoughts and their perspectives and their energy, and I think we’ve got to know each other in a way that has improved trust and a feeling that no ask is too big and every idea is worthy of consideration.
Steve Barron, Chief Executive of Highland Council on the Highland Champions Board
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National Champions Board Learning and Improvement Network We continue to support a National Champions Board Learning and Improvement Network which provides a platform to share learning and practice, and build on local successes. The Learning and Improvement Network allows Champions Boards to come together to collaborate on influencing policy at a local and national level. Through this network, Champions Boards meet twice per year, supported by the Trust but driven by care experienced Champions themselves. We are seeing evidence of a collective ‘voice’ beginning to emerge.
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Life Changes Trust
In September 2017, Dundee Champions Board, which benefitted from Trust funding in Phase 1, held a national event which included all existing Trust funded Champions Boards and many from Phase 2. The event was in partnership with Dundee City Council, Who Cares? Scotland and Carolina House Trust. The event was a shared learning opportunity for all of the local authority areas in Scotland which currently have a Champions Board, and for others who wanted to find out more about what a Champions Board is and how it can be transformational for care experienced young people.
Empowerment Grants The Empowerment Grants scheme has allowed the Trust to invest in small projects which support care experienced young people to express themselves and exercise their rights, develop their confidence and skills, improve opportunities for them to have their say on things which matter to them and increase their opportunities to take part in community life. This approach also allows us to test out the role of small grants in contributing to the empowerment of care experienced young people and providing opportunities for organisations and services working with care experienced young people to strengthen their empowerment approach.
The grant scheme provides an opportunity to target particular groups of care experienced young people who have been underrepresented as beneficiaries within our programme, for example young people with protected characteristics, young people within the youth justice system and young people who are looked after at home. In early 2017, the Trust pledged almost £400,000 to empowerment grants. The first round of funding resulted in the following projects receiving awards:
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Aberlour Child Care Trust (National project)
Barnardo’s Highlands (Highlands)
This project aims to support Aberlour’s care experienced young people to participate in, and contribute to, the Care Review, through participation and engagement activities which are planned, led and delivered by a group of their care experienced young people. There will be a particular focus on unaccompanied asylum seeking young people, young people with disabilities, looked after at home young people and young people experiencing mental health issues.
Barnardo’s Highlands want to support around sixteen care experienced young people (ages 18 – 24) to maintain and expand a music group. This music project will support a group of care experienced young people to share their love of music, learn and share musical skills, express themselves through music and build confidence and self-esteem.
Articulate Cultural Trust (East Renfrewshire) Life Changes Trust funding will allow the Articulate Cultural Trust to deliver up to four creative learning projects for care experienced young people in the East Renfrewshire area, targeting up to forty young people.
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Life Changes Trust
Cyrenians (Edinburgh and West Lothian) Trust funding will enable Cyrenians to deliver a Therapeutic Communities initiative for residents in supported accommodation in Edinburgh and West Lothian, enabling participants to access a suite of therapeutic opportunities, including a three day Eco Therapy residential in the Scottish Borders. Cyrenians have particular expertise in working with young people who are facing “tough realities” due to difficult transitions out of care, homelessness, drug and alcohol issues and mental health problems. A significant proportion of their residents are care experienced.
Dean and Cauvin Trust (Edinburgh)
Move On (Edinburgh and Glasgow)
The Dean and Cauvin Trust aims to deliver a Mums Group for care experienced women under 21 and living in Edinburgh. The activities will focus on improving physical and mental health, promoting positive behaviour in children and improving links with the community. The programme will be designed by the young women themselves.
Move On aims to deliver a project (in conjunction with ‘Fixers’ Charity), which will enable care experienced young people to participate in a film making project, using a youth work approach. The young people will be supported to tell their stories and their views on what would impact positively on their lives in their own way.
Falkirk Council (Falkirk)
Options in Life (St. Andrews)
Life Changes Trust funding will support Tremanna Children’s Home to deliver a project which will enable five care experienced young people (residents of the Home) to undertake a climb of Ben Nevis and for their experience to be filmed. Young people identified climbing Ben Nevis as a goal which would give them a powerful sense of achievement, enabling them to continue to think aspirationally about their futures.
This project aims to expand Options in Life’s ‘Recreation Programme’ from two to three days per week, enabling a further forty five care experienced young people with learning disabilities to engage with their programme. Activities in this programme include confidence building, communication skills, team work and the development of social and employability skills.
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Outfit Moray (Moray)
Stirling Council (Stirling)
Trust funding will allow Outfit Moray to deliver a project which will provide outdoor activity sessions for up to twenty four care experienced young people aged 14-25. The keys aims of the project are to build confidence and self-esteem, improve health and well-being, improve communication, reduce social isolation and increase opportunities for care experienced young people.
This project aims to support the development of a care experienced group and create an online space where looked after children and care leavers from the Stirling Council area can find accessible information about their rights, gain support from a care experienced peer mentor, and feed in their views of the services they receive.
Scottish Churches Housing Action (Renfrewshire) The Scottish Churches Housing Action project will provide an opportunity for up to ten young people with experience of care, together with others at risk through homelessness or other vulnerability, to form a mutually-supportive group, geared towards preparing young people for living independently for the first time.
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Life Changes Trust
Trust in Fife (The Oasis Project) (Fife) The aim of this project is to purchase a workshop, benches, tools, paint and equipment to enable homeless young people who are temporary residents to re-upholster and up-cycle second hand furniture in preparation for when they get their own home.
Voice of My Own (VOMO) (Borders) Voice of My Own aims to deliver a project which will provide an opportunity for eight to ten young people with experience of care, together with a larger group of ten to fifteen young people, to learn dramatic storytelling and film making skills.
Xchange Scotland (Glasgow and surrounding area) Trust funding will enable Xchange Scotland to deliver a project to support up to ten care experienced young people to become more active citizens by providing a training programme leading to a short term international volunteering placement (short term EVS), funded by Erasmus.
Y Sort It (West Dunbartonshire) Through this project, Y Sort It will build a short stay cabin at a large community of huts located in Carbeth, Stirlingshire. The cabin will provide outdoor education and respite opportunities for care experienced young people and other young people supported by Y Sort It.
Response from Options in Life to funding award Everyone at Options in Life would like to thank the Life Changes Trust for the Empowerment Grant which will allow us to expand our service to reach more care experienced young people. We would like to take this opportunity to explain the effect your support will have and the difference which it will make to the lives of our young people. The Recreation Programme is our flagship project. Since we began, the participants, all young adults with learning and other disabilities, have benefited in so many different ways - improved confidence and selfesteem, reduced social isolation, a focus of excitement each week and acceptance within a group. Our groups take part in a huge variety of activities, which encourage the members to interact with one another, discover new interest and try new things…Through activities such as rock climbing, tank riding and kayaking, they have pushed the limits of what they themselves are capable of. Each time they go they surprise us, and themselves, all over again.
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Who Cares? Scotland In December 2014, the Life Changes Trust made a total award of £1,232,243 to Who Cares? Scotland to deliver a three-year programme ‘Engage, Mobilise and Empower: a movement of change for care experienced young people.’ Since then, with Life Changes Trust support, Who Cares? Scotland has transformed from an organisation largely focused on providing independent advocacy into a dynamic campaigning and influencing membership organisation driven by the determination, talent and skills of care experienced young people.
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Life Changes Trust
They have played a vital role in growing care experienced participation, empowerment, voice and influence. Trust funding has been a critical factor in enabling the organisation to do this work at a national level, and with demonstrable and positive results. We have seen the power of care experienced young people’s stories in making legislative change, with their testimony being the catalyst to raising the care leaving age to twenty one. The First Minister also commissioned an independent root and branch review of the care system to be driven by care experienced people. In announcing this review, the First Minister stated, “every child deserves to be loved”.
In May 2017, the Care Experienced Young People Programme Committee invited Who Cares? Scotland to submit a new proposal for future funding. This proposal was approved at the September 2017 Board Meeting. The new five-year funding award is specifically designed to support Who Cares? Scotland to build on the impact already achieved, focusing on three themes: Belonging; Voice; and Choices and Opportunities. Their vision for the next five years is: “A lifetime of equality, respect and love for care experienced people”. Key elements of their work over the next five years will include:
enabling care experienced young people to connect with one another and with supportive adults, building their skills and confidence in safe spaces and growing their networks of support supporting care experienced young people collectively to capitalise on their developing voice and utilise that voice to set the agenda in relation to policy and practice tackling stigma and discrimination by reaching the full diversity of care experienced young people influencing the public sphere via growing social media reach, media collaboration and participation in public facing initiatives such as FrameWorks (see Priority 4) transforming the employment environment for care experienced young people by collaborating with Corporate Parents to roll out an enhanced version of the ‘Family Firm’ model
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Personal Story Something Who Cares? Scotland strives for is to get the voices of care experienced people heard, because it’s the best way to understand what it’s really like to go through care. In her speech, the First Minister said: ‘The review will be driven by the experiences of those who are in care and have been in care. That is not something any other country has ever tried to do. We will do it here in Scotland first.’ This is what gives me the most hope. It means that the voices of care experienced people, like myself, will be the ones to shape the system. For it to be recognised that the care system is not working is a massive achievement, and to help change it is even bigger. It’s important now that we look forward to what the future holds and see this review through. I’m overwhelmed when I think about the possibilities. We know that if care experienced people are listened to, these changes and many more will be made. Being part of Who Cares? Scotland makes me feel like part of a huge wider family, and that’s something all care experienced people should feel. I know we’ll all be watching and hopefully be involved in what happens over the coming months and years to see how the care system changes. I’m so proud to have been part of this amazing moment in history and I’m proud to be part of this movement. This is an opportunity for us, as a society, to re-imagine what care is. Let’s grab it with both hands.
Harry
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Life Changes Trust
Priority 3 Care experienced young people have access to support and guidance when and where they need it
Lasting and meaningful relationships that can support care experienced young people throughout their care journey and well into their young adulthood is the focus of this priority area.
Peer Mentoring The Trust’s investment in mentoring is recognition that not everyone has had access to consistent, supportive and positive relationships throughout their lives. Mentors can offer a listening ear and act as a sounding board, which can make a profound difference to the cognitive, social, and emotional development of a care experienced young person. We are supporting peer mentoring as one means of increasing the opportunities for care experienced young people to develop positive relationships. Young people have spoken consistently about the need to build a connection with someone who “has been there” and who can walk alongside them.
Peer mentoring usually takes place between a person who has lived through a specific experience and a person who is new to that same experience. The success of peer mentoring is generally down to this shared experience, and a feeling that someone else really does understand what you have been through. Mentors also provide encouragement and support, a listening ear and a consistent relationship in the life of a young person and this can be of significant and enduring value. In May 2015, the Trust allocated £500,000 funding to support an initial phase of peer mentoring projects for care experienced young people, not only to provide the support itself, but to assess the benefits of this approach. We funded six projects, as detailed in our previous Progress Report. In February 2017, the Trust agreed a one year extension to the funding awards for our six Peer Mentoring projects.
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We continue to support a Peer Mentoring Network, providing space for the projects to update each other on their progress, discuss mentor recruitment and mentee matching, compare evaluation approaches and explore how to gather effective case studies. Four of the Peer Mentoring projects which are funded by the Trust have also been awarded Intandem funding (which provides mentoring for looked-after at home young people aged between 8-14), and two further projects have earned Quality Awards from the Scottish Mentoring Network.
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Life Changes Trust
Our six peer mentoring projects are: Barnardo’s Scotland (South Ayrshire) Y Sort It (youth-led charity in West Dunbartonshire) The Rock Trust (West Lothian) Move On (Glasgow and Edinburgh) Ypeople (Glasgow City) Up-2-Us (Greater Glasgow) The following is from the Move On Peer Mentoring programme evaluation report:
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Workforce Development We want to transform the experiences of care experienced young people throughout Scotland by supporting improvements in the knowledge and skills of the paid and voluntary workforce so that they are more able to meet the needs and aspirations of care experienced young people and improve outcomes. In order to consider these issues, during 2017, the Trust invested in a five-day systems leadership programme which brought together key sector leaders representing different elements of the workforce, including: Barnardo’s Scotland Care Inspectorate Centre for Excellence for Looked After Children (CELCIS) Centre for Youth and Criminal Justice (CYCJ) Coalition of Care and Support Providers Scotland Falkirk Council Fostering Network Social Work Scotland STAF (formerly Scottish Throughcare and Aftercare Forum) Strathclyde University Who Cares? Scotland
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The Trust’s Care Experienced Advisory Group set the leaders a challenge to consider “how do we put love and relationships at the heart of the care system?” and “what are you actually going to do about making things better?” Participants have since told us that attending the course has made a profound difference, both to their individual practice and to the relationships they have established as a result. One group reported back that their efforts had led to a commitment from the Care Inspectorate to introduce specific questions in the inspection process, requiring services to show how they put enduring and loving relationships at the heart of their approach. This is quite revolutionary. The group has now agreed to form a community of practice, which will be supported by the Trust. An Expression of Interest has been developed to enable the leaders and their partners to potentially apply for funding for initiatives which will take forward workforce development, using the systems leadership principles agreed by the group. The first Insight and Workforce Development Proposals will be due in November 2017.
SallyAnn Kelly (CEO Aberlour) 5 days away from the ‘day job’ including a residential weekend seemed like a big ask. 5 days on systems leadership. But I got curious, very curious, and was enthused by the prospect of bringing 16 people together from across the public, higher education and 3rd sectors to begin to imagine how we might play a role in shaping thinking and improvement in our systems for looked after children. Day 1 differed in one important and profound way, for it was on that day that our true task was set, and set very clearly, by a group of care experienced young people. Quite simply, their ask was ‘how do we put love and relationships at the heart of the care system?’ Another pointed, but fair, question was ‘what are you actually going to do about making things better?’ We talked extensively about positive relationships and the part compassion, nurture, empathy and guidance play in our development as humans and how we embed these values in our care system. We also talked about love and the need to resist the simplification of that as a concept, whilst simultaneously embracing all of the different aspects of that love. It seems to me that we have important choices to make as we move forward with our Review of the Care System. Systems leadership encourages curiosity and people to actively notice what is happening around them. This was a welcome reminder from my perspective to consciously practice those techniques and reflect on how I can normalise them in my daily work. This experience will prove, I am sure, to be a transformative one for many of us. It is one the Life Changes Trust should seek to repeat for other sector leaders.
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Priority 4 Care experienced young people have increased access to education, training and employment
The Aspirational Awards scheme is a young people-led individual grants fund, designed and delivered by the Trust’s Care Experienced Advisory Group, aiming to empower care experienced young people aged 21-26. The scheme provides the opportunity for young people to apply for a funding award aimed at: thinking ‘big’ and achieving their ambitions supporting their personal development and reaching as high as possible in life Aspirational Awards offer synergy between a number of other Trustfunded programmes, most directly through the Individual Awards element of Champions Boards. Our first round of Aspirational Awards, which we launched in November 2016, resulted in thirteen successful applications from a total of twenty one proposals.
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Applications were wide and varied, ranging from business start-ups, to volunteering abroad, as well as some specialist vocational courses to support career development. Our second round, launched in April 2017, resulted in eighteen successful applicants from a total of twenty nine. Again, there was a great deal of variety in applications, which included business start-ups, international trips for training, internships, volunteering, studies, specialist equipment, and a PhD, among others. Several of our Care Experienced Advisors were employed by the Trust as sessional Grant Assessors. Each of the successful applicants has been assigned a key contact within the Trust with whom they regularly check in. Applicants with a business start-up focus were also offered access to a business mentor.
Jimmy Paul received a Life Changes Trust Aspirational Award to undertake a Diploma in Executive Coaching through the Academy of Executive Coaches (which he has now officially passed). Receiving coaching when I worked for the NHS was life changing for me. It was the one thing that I would single out that helped me to own my care identity, from which my whole life and career has shifted and flourished as a result. My curiosity to become a coach resulted from my positive experience of coaching, and I believe the potential for coaching across the looked after children’s sector (for both those who work in the sector, and children / young people themselves) is huge. This was quite simply an opportunity that I would not have had if the Aspirational Awards were not around. The skills I have developed on the Diploma are just amazing. I have learned things which have helped me in my work …. such as how to use clean language to guide colleagues, and how to draw on their strengths and knowledge to find appropriate and effective solutions to really complex issues.
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I’ve also delivered a ‘Coaching Masterclass’ here at CELCIS for my team, which seems popular enough that other teams want me to do the same for them on their away days! I have been practice coaching a number of clients, some with care experience and some who work in the sector, and all of these have described a transformational effect of our coaching session on their lives. It’s been extremely fulfilling, and it’s has helped my passion for coaching to grow. As part of the course, we were constantly challenged to answer two questions: ‘who am I?’ and ‘how do I coach?’ In doing this, I have a deeper understanding of how my life has shaped who I am, of some of my ‘gremlins’ and a better understanding of my critical inner voice. I also now know where my deep strength and drive comes from, and how to draw on that when I need to. Completing the coaching diploma has been a transformational experience for me in itself. I therefore want to say a final, massive thank you to you, the Life Changes Trust and the LCT Advisory Group for everything you do with the Aspirational Awards, and for choosing me to achieve this dream.
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Insight and Influencing Changing Public Attitudes: FrameWorks This project is Phase 1 of a possible three-part programme to ‘reframe’ how children’s social care in Scotland is viewed. The project will address how we talk about the care system and the people in it, in a way that we hope will help shift negative attitudes and build support for change. The principle aim of the project is to create a new ‘core story’ which will focus on the gap between the public’s beliefs and attitudes about the care system, and the reality of what it’s like to be in the care system, based on the perceptions and experiences of care experienced people and those who support them.
The objective of this work is to improve public understanding of the issues affecting vulnerable children and families, and to put these issues firmly on the agenda for political discourse. The project is being undertaken by the USA-based FrameWorks Institute, in partnership with The Robertson Trust, the Life Changes Trust, and the Centre for Excellence for Looked After Children in Scotland (CELCIS). A range of other Scottish organisations and care experienced individuals will also be involved, either as participants in the research, or providing advice, guidance and assistance in the design and delivery of the project’s components. A Framing Report will be produced in March 2018.
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Alternative Futures Alternative Futures is an international two year project which looks to better understand the impact that violence can have on the life and development of a young person, and to enable staff who work with them in residential care to better support them in dealing with and overcoming their experiences. Young people will consequently be more able to overcome trauma in their past lives and to deal more effectively with adversity in their futures. Funding was awarded to Children in Scotland to support the learning and wider dissemination of findings from this international study to promote understanding and also prevent violence within residential care settings.
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One of the Trust funded Peer Mentoring projects, Up-2-Us, will be directly involved in the first phase of this work. Young people involved with the organisation will participate in the research to understand their perceptions of violence. The project will be delivered by a European partnership of organisations across six countries (Spain, Bulgaria, Scotland, Italy, Germany and Austria). A National Learning and Influencing Seminar is planned for autumn 2017 and an international conference is planned for November 2017.
Trust Governance, Finance and Funding Awards Trustee Report and Financial Statement 2016-2017 Information on the governance of the Trust and our finances for the financial year April 2016- March 2017 is available in our Trustee Report and Financial Statement on our website: http://www.lifechangestrust.org.uk/ about-us/annual-reports
Investments The Trust is required by its Trust Deed to spend its £50 million endowment by 2023 and to invest its available capital to raise additional income. Our Business Plan states that the Trust will invest responsibly and prudently, within an acceptable risk framework and with appropriate consideration of ethical issues.
Our Business Plan also states our desire to cover the majority of our operational costs from investment income to maximise the percentage of our £50 million endowment spent on funding awards and other charitable activities. Trustees approved the Trust’s initial Investment Strategy and appointed investment managers in March 2015. Since April 2015, the Trust has invested £40 million of its capital through its investment management provider, Investec, in line with the Trust’s investment policy. As for any investor, the Trust’s investment income fluctuates due to market conditions. Also, as we draw down our capital to pay for funding awards, the level of income we can generate will reduce year on year as the money under investment falls. This means in future years the Trust is likely to have to use some of its capital to cover operating costs. Our investment performance is monitored quarterly and investment strategy reviewed at least annually by Trustees. During the 2016/17 financial year the Trust earned £1,343,384 from our investments.
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Getting in touch If you have any queries or wish to share your views and ideas, you can contact the Life Changes Trust in a number of ways: Phone: 0141 212 9600 Email:
[email protected] Website: www.lifechangestrust.org.uk Address: Life Changes Trust, Edward House, 199 Sauchiehall Street, Glasgow, G2 3EX
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Life Changes (Trustee) Ltd Registered in Glasgow, Scotland Registered Charity Number SCO43735 Life Changes Trust Registered Charity: SCO43816
