I always look forward to the arrival of Spring. I love seeing life and colour appear from the ground under my feet, and the sound of geese passing over my head fills me with pure joy. I spend my time shifting around all the indoor and outdoor sunny spots, rejecting the scraps of winter that linger in the shade. All through those short days and long nights, somewhere deep within us, we store some light to propel us into the season ahead. Spring, for me, is always bound up with a sense of energy, promise and creativity, and never has that felt truer than this year.
Creativity, in its broadest sense, has been a consistent theme through our funded work at the Life Changes Trust. Across the country, young people with care experience have been planting seeds, upcycling furniture, writing poetry, designing spaces, cooking new recipes, capturing photographs, painting pictures, making music, shooting films, crafting, building dens, dancing, acting, and more. You would be forgiven for thinking that these all just sound like cool things to do, because they are! However, amidst all of the enjoyment, adventure and fun, there are powerful stories to be told.
From simple activities to more immersive projects, we know from independent evaluations and from direct conversations with young people that creative approaches and outlets for creative expression can have a range of positive impacts. These include:
enhancing wellbeing, with wider benefits on mental health, educational attainment and behaviour
boosting confidence and skills
supporting involvement in decision-making
tackling inequalities and breaking down barriers to engagement (particularly where inclusive and accessible creative approaches have supported young people who may be otherwise silenced)
improving relationships, communications and connections with people (including other young people, family and professionals)
increasing self-belief and self-worth
“It’s made me want to do more art and progress a bit… I really want to start writing professionally, maybe I can like put something out there, something creative.”
~ Young person
“We can all learn from each other as well, and learn skills and tips from each other… it sets a nice safe space for us to go, and escape from your home life for a while, and then just have a wee bit of freedom.”
~ Young person
At the Trust, we also have first-hand experience of the power of creative approaches. Last year, we encouraged people with experience of care to write about something that mattered to them. We recently published the collection of poems and reflections in a book called ‘Here I Stand’. The project has been incredible in so many ways. Every piece in the book has improved our understanding of care experience. Many of the talented contributors have also told us how creative outlets provide a safe, inclusive space to express their thoughts and feelings. Perhaps most of all, we have loved sharing moments of pride and happiness when people see their work in print and realise that their words matter.
We know that creative activities have been vital throughout the pandemic too, particularly in addressing the isolation, loneliness and mental health challenges felt by so many young people. As restrictions ease, we want to share our learning to improve awareness of the importance of creative activities to young people with care experience and, ultimately, to encourage more investment in creative practice and opportunities.
In June, the Trust will be hosting‘Voice and Vision’– a three-day event around creativity and care experience. A range of fantastic partners will deliver workshops to highlight the impact of this work and to provide inspiration and encouragement to young people and professionals to pursue more creative opportunities. We are so excited to be launching the Voice and Vision gallery at the event too. This online gallery will showcase the creative talents of young people with care experience. We are currently looking for people and organisations to submit creative content for the gallery, so please get in touch if you’d like to get involved!
We want to show that this way of working is about more than being creative and having fun. It’s about the rights and participation of all young people with care experience. It’s about seeking out different ways to listen to and elevate the voices of young people and involve them in the decisions that affect their lives. So let’s tap into all the colour, energy and creativity of the season as we support young people to be at the forefront of visioning their own positive future.
‘April hath put the spirit of youth in everything’~William Shakespeare
Mhairi Reid, Evidence and Influencing Co-ordinator
Keep an eye on our website and social media channels for more information on the Voice and Vision event on 8/9/10 June. The workshop programme and registration information will be published in early May.
Click here for more information on submitting content for the gallery.
Digital copies of Here I Stand are available to download here. We also have a limited number of hard copies of this fantastic book too – please contact email@example.com if you would like to request one.
This piece was written in April 2020, BY GEorge reid whose father has dementia. It gives a reflection on life a year ago, with a short update in March 2021.
Four is the lockdown number. Why four? Breakfast, lunch, dinner and supper? Well not exactly. Four is the number of times the carers come in the house to empty my Dad’s catheter bag and, if I wasn’t here, make him something to eat and give him his medicine.
I worry for them and for us. It took weeks for the Government to mention carers in homes and even longer to speak about home carers, despite there being adverts on the TV all the time for this service. Why is that? Could it be because the Government have no need for home carers? Are their parents tucked away in their gated retirement homes attended to by a crew of doctors and nurses?
When my Dad’s carers started, they did not have masks, although they have always worn gloves. I gave them a mask each. They work four days on and switch to having four days off. They are both lovely and friendly with Dad and do a great job. I did think about cancelling their visits and doing the job myself, which is mainly emptying the catheter bag, but starting up again after lockdown would probably not be easy as we would go to the bottom of the list and have to wait a while I would expect.
They come at 8am, 12 noon, 5pm and 7.30pm. Therefore, my day revolves around these four events. Why? Because, in theory, this is when the virus can enter the house if it’s not squatting here already hiding in plain sight. Come out come out wherever you are, you little BLEEP! Squatting on the toilet flush handle like Demonic Cummings at a Sage meeting………sorry, I got a stream of consciousness there, I do that sometimes.
I have two buckets of soapy water and two pairs of gloves that I use to wipe down the surfaces and use for nothing else. The Doc on YouTube, Dr John Campbell, my go to guy for factual info about the virus, says if people can be asymptomatic, then anybody could have it. The Doc said that there is a shelter in NYC where 86 % of the population had the virus but were asymptomatic and could be pre symptomatic. I could have it and Dad could have it. And, as the advert on the back of the Guardian says, Act Like You Have It. So I do. I “see” it everywhere.
To help keep things clean, I have gutted the house. I have removed all ornaments and doilies from every surface and anything we don’t need so I can wipe the surfaces and keep the place clean. Mum won’t recognize the place when she comes home.
In the early days, this was a struggle, with wipes and all sorts of cleaning solutions. Now I use antibacterial washing up liquid and a cloth, thanks to Channel 4’s “How Clean is your House” – THE most important TV program about the virus that I have watched, as they said this is the best way to keep the virus at bay. They demonstrated this by dipping a finger with washing up liquid in to a bowl of water with pepper in it to simulate the virus. An uncoated finger comes out covered in pepper and a coated one only catches a handful of grains. This was all before the leader of the free world suggested we all drink bleach.
But I digress. After each carer’s visit, I use the soapy water to wipe down any surface they may have touched or even breathed on (an impossible task really as the virus can stay in the air for hours) so we always have the windows open. This house is normally so hot you could grow tomatoes. There’s one bucket for the bathroom; taps, door handles, door, toilet flush, light switch and toilet lid, outside door, both handles and the table. Then with a quick change over to bucket two, it’s all surfaces in the front room; landline phone, table chair back, door handles, light switches and at night in the bedroom; table, light switch unit and door handles. The logic being if the carers are asymptomatic, anything they have touched or breathed on could harbour the virus. They do wear gloves but I just can’t take any chances with my dad, so I carry out this process like a theatre orderly with OCD cleaning down an operating theatre before open heart surgery.
The reason my Dad needs a carer is he is 90 and has Alzheimer’s and up until my mum fell, she was his carer. Our lockdown started early with a self-imposed semi-lockdown after the fall which was the day after her 87th birthday on the 25th of January and she has been in the Royal Infirmary and now in Liberton recovering from a fractured spine ever since. The last time I saw her was the Sunday before Lockdown.
In mid-February, Dad started having problems trying to pee and complained of the pain with his water works and had to be admitted into the Western General. After about two weeks in hospital, he came home a week before lockdown with a catheter bag strapped to his leg and this is the reason I’m living with him instead of at home with my own family.
The Number Four, again…
Four is the number of exercises I carry out in rotation. We are five floors up in a 1950s council block, which does have its advantages as I have taken some amazing pictures of a blood orange Venus over the Edinburgh western night sky. I only go out for shopping once a week as I don’t like to leave dad on his own, as he managed to fall in the five minute changeover between me and my sister, and she found him lying on the floor in the living room. He had somehow managed to rip most of the skin off his arm and it looked like a scene from Zombie Apocalypse with his skin dangling off in large chunks. This happened the day before lockdown. He ended up with the biggest plaster I have ever seen covering the wound. Anyway, I digress, again, back to my exercise regime… star jumps (60) running on the spot (60) crunches (40), and press ups (25). I do all these four times each day (of course!), bouncing about on the balcony. I play something at 3pm every day from my Spotify or Mixcloud sites or Gilles Peterson’s Worldwide internet radio station.
Four is also the time of day I stand at the back window (whoever designed these flats should have put the balcony at the back as it’s the back that gets the sun). It’s been really hot this week so I make us a cup of tea and dad goes to the kitchen window to get his Vitamin D and his Rich Tea biscuits, and I go to the back bedroom, the room that used to be mine when I lived here and I get my immune system boost as recommended by the Doc.
The other important four is 4G (no internet here, it’s like 1985, no digital anything apart from the microwave). No, I don’t have a tinfoil hat in the wardrobe, no conspiracy theories here, my friend. 4G is what I have on my 4 year old Huawei P2 . It needs to be on a permanent charge or it dies. I have already maxed out my data several times. I have access to 2G Wi-Fi via an air B& B on the roof who allowed me to use theirs which lasts for about, yes you’ve guessed it, four minutes before freezing completely, on a good day. Most of the time it doesn’t work at all.
Oh, almost forgot, the two TV’s have inside ariels and the screen freezes several times a day, often for about, yep, guessed it again four minutes. Now this can be handy at times, time to put the kettle on, got for a pee or my favourite pastime, washing my hands.
The lack of proper PPE has been described by other carers in homes as being like Russian Roulette, a pastime that took one of my favourite singers Johnny Ace, and I have no desire to join him in soul heaven just yet. These strange days do engender some strange thoughts. Is each carers visit a single event? Or is each visit increasing the probability of us catching the virus?
Dad watches a lot of war programs on Yesterday or as I call it Alzheimer’s TV as the programs are shown on a loop (he doesn’t notice). Some WW2 pilots came to the conclusion that each time they landed safely back at base their chances of making it through to the end of the war increased, almost like they have diced with death and become like the Arsenal team of 2003/2004. Are we risking life and limb every day with the full chamber getting closer to our heads? Or maybe it’s all deterministic like DEVS? What is DEVS? Watch it to find out, no spoilers here my friend.
After writing this, there was another four to add. Dad woke me up at 3.05am “George this bag isnae working I canny pee, can you fix it?” It was obvious that he was in extreme pain and could not pass any urine and when I looked at the tube I could see blood in it. After much faffing about with the catheter and heated discussions, I decided to call the ambulance. They arrived quickly and took him away to the Royal Infirmary at 3.58. He should have been going back to the Western General but they didn’t want to take him. I grabbed a Sainsbury’s shopping bag and threw in a change of clothes and essentials like his false teeth. It crossed my mind that I may never see him again and neither would my mum or my sister. I couldn’t hug him, so I just said ”see you later” as he was being wheeled into the lift, which sounded so lame. The last thing he said to me was “get inside or you’ll catch your death”.
It took a while, but eventually I dropped off to sleep and was awakened by the sound of the doorbell at 6am. Dad was with the paramedics and he shuffled in the door in his slippers and went straight to bed. When the carer came at 8.30 he told me Dad had some blood in his urine. Today is all about keeping an eye on this situation as he may have to go back into hospital.
I phoned the Royal and got to speak to a doctor who told me it’s a normal thing to happen and may happen again as the catheter gets blocked with small amounts of blood as it’s a thin tube. She said if the urine was the same colour as Rose wine it is ok, if it looks like Merlot, bring him in. Keeping with the alcohol analogy it’s like weak lager, so as Saul would say “It’s all good man”.
Oh, sorry, gotta go, that’s the entry phone buzzer so I have to let the carer in.
March 2021. George’s mother is now home and his father’s dementia does not seem to have worsened, although he is now 91 and has ongoing health problems. They are now receiving more care.
He says “I try to get both of them do chair yoga and move about more in the flat but it’s a Catch 22 as it can cause pain. It sounds harsh but it’s “use it or lose it”, as their muscles waste away with lack of activity. My dad enjoys singing along to his Playlist for Life, although I’m not sure mum or whoever is in earshot at the hospital would enjoy it so much…. Hopefully when the better weather comes I can get them out for a spin in a wheelchair so they can feel the sun on their face.”
In the last twelve months, how we view and use spaces has changed dramatically. Our homes are now our work spaces, public spaces have been quiet and empty, and virtual spaces are now the new norm for meeting with colleagues, friends and family. Until we found ourselves without physical spaces for meeting and being together, I hadn’t paid them much attention – now I miss them dearly. I had also taken for granted the impact the spaces we occupy have on the work we do but it is clear they play an important role in our engagement with young people.
Last March we witnessed the closing of community centres, classrooms and other dedicated youth spaces across the country. Without much notice at all, those who worked closely with young people were thrust into the virtual world and had to adapt quickly to running online youth group activities, offering support online and from a distance, and learning how to build and maintain relationships with young people without ever spending time together face-to-face. Suddenly the impact that physical spaces have on participation and engagement became very clear.
On Care Day, young people and those who work alongside them reflected on the importance of physical spaces in a workshop hosted by the Trust. The themes of ownership, belonging and safety were consistently reflected in the discussion.
Feeling ownership of a dedicated physical space allows young people to be more authentic and genuinely themselves. This leads to a feeling of belonging and safety. The ability to decorate the space opens up options to display their work and express themselves creatively. That ownership then feeds into possibilities of addressing any power imbalance felt between young people and the services they engage with in that space – suddenly the young person is putting the kettle on and showing you where the toilet is. They feel comfortable and safe. They feel welcome. They feel more in control.
We also heard many stories about the importance of food and sharing meals in dedicated spaces. Those can be the gold-dust moments – preparing food or passing the salt and pepper across the table – that allow relationships to bud and blossom, friendships to form and memories to be made. And as a result, we see more positive engagement and participation from young people and they feel their presence and contributions are valued.
In stark contrast are the reflections we heard about spaces where young people did not feel welcome. In those spaces young people didn’t open up as much or respond to the opportunities around them. They perhaps disengaged or their attendance wasn’t consistent, they didn’t feel they could make full use of the space because it wasn’t theirs or they were reluctant to be truly themselves because they didn’t feel completely safe in the space they were in. The importance of feeling welcome was powerfully illustrated by one group who told us about a caretaker of a shared public space who wasn’t particularly friendly or warm towards the young people and that was enough to spark a decrease in participation.
Although we know how important physical spaces are and there is a hunger from young people and workers alike to reclaim those spaces, we must not overlook the positives drawn from our sudden venture into the virtual world. The breadth of online opportunity that has sprung up over the last twelve months has allowed for further reach and improved accessibility for some young people. It has ensured that young people’s voices continue to be heard and it has also played a vital part in tackling the isolation and loneliness felt by many.
Given the pace at which we have all had to learn about how to occupy virtual spaces and the wealth of knowledge and experience we have developed, it would be a real shame not to give thought to how we provide safe and welcoming spaces online as well as offline to our young people.
My wish for us is that, as we move towards the easing of restrictions and the re-opening of our beloved physical spaces, let’s be mindful of what we have achieved in virtual spaces and take that learning with us. How can we move back to face to face work and invite the virtual world to remain a part of our participation and engagement work with young people?
The Trust is keen to share learning and practice, so please get in touch if you’d like to explore this with us.
And as for those physical spaces – well, I don’t think we’ll ever take them for granted again. I look forward to witnessing young people and the adults alongside them breathing life back into our cherished spaces very soon. We all know that magic happens within those four walls.
Laura Graham, Senior Evidence & Influencing Officer, Life Changes Trust
We often associate coproduction with activities that are full of creativity and thrills. In the fairground of coproduction developing policies, designing services and public spaces, creating grants programmes and delivering influencing events are the equivalent of those classic, exhilarating attractions such as the Ferris Wheel, the Waltzers, the Dodgems, Chair-o-planes and the ever-colourful Carousel. However, it’s easy for us to overlook or dismiss the potential in different experiences at the fairground.
“Nobody is going on that ride, it can’t be any good.”
“I can’t see inside there, but it’s probably for kids. There’s no way that’ll be exciting enough for us!”
It’s the same with coproduction. We are often drawn to familiar practice. As a result, there are all kinds of activities that we neglect or ignore when we think about opportunities for coproduction. I’d like to share just one example with you in this blog – procurement.
What words come into your head when you think about procurement? Perhaps you think of words like: complexity; rules; deadlines; pressure; experts; criteria; reading…yes, lots of reading. I’d also like to hazard a guess that only a limited number of you are drawn to words like fun, interesting, creative or energising.
Many of the assumptions we make about procurement actually influence the way in which we carry out commissioning. They can lead us to think that there is no room for imagination within established and important rules and regulations. They may even lead us to think that the best (and only) people to be involved in the process are experts who understand all of those rules and who we believe will embrace the complexity and the ‘boringness’ of the task at hand.
But what happens when you shake things up and challenge these beliefs? The short answer is that the procurement process becomes more interesting, inspiring and ultimately more robust.
We’re at an exciting stage in the lifetime of the Trust as we gather evidence of the impact the funding has had and work to ensure that this evidence continues to influence policy and practice long after the Trust ends in March 2022. We have an ambitious evaluation programme and we are committed to involving young people with care experience in evaluation activities, from fieldwork and data analysis to dissemination and influencing.
The commitment to meaningfully involving young people has also been a key feature of our procurement processes and our Advisory Group (each with their own experience of care) have participated in evaluation panels wherever possible. The evaluation of the Trust’s coproduction approach with our Advisory Group has taken this a step further, with the whole procurement process for the evaluation being coproduced alongside advisors. This included:
developing the evaluation brief
reading proposals, scoring tenders and shortlisting for interviews
designing the interview process
interviewing bidders and making a final decision on the preferred bidder.
I’ll be honest with you, it’s the best procurement experience I have ever had. Applying coproduction principles had an impact at every stage of the process. We received more creative proposals because of the brief we co-created and the tasks that we set for bidders at the interview.
The Advisory Group pushed us to be more inventive and much clearer in our expectations of bidders. They asked interesting questions and brought more diversity of opinion to every discussion. It’s obvious that they also felt a shared sense of responsibility to represent the Trust, the Advisory Group and young people with care experience more generally, which is something that Trust staff could never replicate.
Most of the work was done by advisors on a voluntary basis, with paid work linked to very specific tasks such as the reading and scoring of tenders. The evaluation panel took place during a residential weekend with the Advisory Group, and bidders were interviewed on the Saturday. This may seem like a small thing, but it’s something that made a big impression on me. It required flexibility from bidders and sent a strong message that we want to work with an evaluator that shares our values around participation and inclusion.
It was so important for the advisors to be bought into the evaluation from the start, and coproducing the procurement process with them enabled a really smooth transition into the evaluation itself. Not compromising on our values and principles has also facilitated a clear and productive relationship with the evaluators.
“We were given a really good brief and I liked that we got to demo activities rather than just talking about what you plan to do. There was a different balance of power from the start of the interview, and you really got a strong and positive feeling about the culture and values of the Advisory Group and the Trust. The process also sent a clear message to evaluators from the beginning about who you’re accountable to and how you’ll be working with people. It was a powerful and memorable experience meeting the advisors – we were so pleased to be awarded the work but even if that hadn’t been the case I would have taken away that strong impression of meeting those individuals on that day.” Senior Researcher, Matter of Focus
Sharing learning and influencing practice is central to our work at the Life Changes Trust. So what are the key things I’d like you to absorb from our experience of taking a coproduction approach to procurement? Don’t ignore the unexplored or shy away from an opportunity that might challenge established practice. Procurement will always have rules that need to be followed to ensure a fair and legal process for all bidders.
However, there is plenty of room within those rules for thrill-seekers and coproduction. So, strap yourself in and enjoy the ride!
Mhairi Reid, Evidence and Influencing Co-ordinator
At In Control Scotland, we believe in the power of equality and inclusion. In April of 2018 we received an award from the Life Changes Trust to run a 3 year ‘Rights and Equalities’ project that works with young people with care experience who also have a physical/learning disability. The aim of this project is to work together on improving how to exercise rights and to improve confidence, skills and aspirations. This has focussed on individual opportunities as well as accessibility of groups and other settings.
A range of sessions have been carried out in partnership with various organisations, including with Champions Boards and local groups such as the Care Family Meet in Aberdeenshire. The purpose of these sessions is to develop young people’s capacity to make positive choices and exercise control in their lives. Through this project we also aim to create a network of young people with care experience with a physical/learning disability who feel confident speaking up, and are better connected and included.
Throughout the last two years we have learned a good deal about the sense of identity from young people who have a disability and are also care experienced. We have had interesting feedback from people who moved to adult services for disabilities but are also care experienced. Some people felt that if they went on to be supported by a disability team as an adult there was a lowering of the awareness of their care experience. While neither of those things should define them, they valued the acknowledgement of the impact that having been in care had on their lives, and sometimes that level of understanding wasn’t always there within a disability team.
We need to find ways to support people’s complex identities, making sure that the whole person is heard and understood. I’ve been told I overestimate people, but in practice we usually are able to show that when people are included, listened to and supported in the right way, people achieve more than the system allows them to plan for.
Aaron is a good example of this.
Aaron is friendly and eager to please, and when a colleague was supporting him to decide what new skill he wanted to learn, it could have been easy to present a few options and then run with the first one that garnered any interest. For Aaron, however, taking the time to explore different options was absolutely vital for finding the right fit for him. After a couple months of trying different things, he decided on guitar lessons and has been excelling. For Aaron, the important thing was that people took the time to really hear and understand what he needed to be truly informed and included in decision making in a meaningful way.
It’s not enough, however, to listen and to understand. We also need to act. Professionals and services should be as accountable for what they don’t do as they are for what they do. People often talk about what they can’t do, rather than saying ‘what would it take to do this well?’ That accountability is fundamental.
People who have the confidence and the ability to fight for their rights often feel like they’re starting from scratch. They feel like they’re the first person who’s ever had to challenge the system. We need to continue to gather the individual stories of successes challenging the system, so we can build confidence in better solutions. That way people aren’t starting at the bottom rung of the ladder, having to re-argue challenges that have already been won by others.
Everyone should be entitled to a certain starting level of response. Professionals should not be able to pick and choose what people are entitled to, particularly when it is a matter of national legislation. What we would like to see, therefore, is for all areas in Scotland to have documents outlining what rights and entitlements exist and what that actually means for the people who need these supports. We would like to see a shift from being reactive to being proactive, where groups and organisations start looking around at their setup and figure out how to make it inclusive ahead of time instead of realising after the fact that they have been excluding others without realising it.
With the right supports and understanding – with the ability to listen differently and act with integrity and accountability – we can create services and supports that work for all young people with care experience and include all of their complex identities.
What does it mean for a house to be a ‘home’? Is it curling up in your favourite chair at the end of a long day? Sharing a laugh with friends and family? Perhaps it is that feeling you get cooking your favourite meal. While having a place to live is a fundamental need, it can be easy to overlook the importance of feeling ‘at home’. To truly feel ‘at home’, it is not enough to be in a place that meets your needs; there must also be a sense of belonging, a feeling of connection with your community, and the ability to make meaningful choices over your actions and surroundings.
At the Life Changes Trust, we value the expertise of those with lived experience. So when young people with care experience told us it wasn’t enough to live in ‘appropriate accommodation’, we paid attention. In 2018 we introduced the Home and Belonging initiative, which aims to support young people to find a strong sense of home and belonging in their own communities. We knew that young people leaving care had needs that were often not being met, and we knew that having a place to sleep at night was not the same thing as having a home.
We funded this initiative because we believed that young people working alongside practitioners and housing professionals could co-create innovative new solutions to support young people with experience of care to feel safe, secure, and connected in their homes and communities. Funded projects include efforts to create new housing, but also the development of places that can be a ‘home away fae home’ and projects that teach young people how to ‘upcycle’ items and make spaces their own. You can read about each of these projects here.
With COVID-19 and the associated lockdown measures, it has become clear that having a home, not just a place to live, is more important than ever. Whether we’ve been stuck at home during lockdown, working from home, or looking forward to the day when we can once again visit other people’s houses, it’s clear that ‘home’ as a concept has been working overtime. Bedrooms, living rooms, and kitchens are now ‘home offices’. Whether you are a key worker who has been working intensely since March, someone who is only just getting back to work after being furloughed, or a parent who spent the spring trying to home-school their children, our relationship with the idea of ‘home’ has changed significantly.
This year, we’ve all learned a little bit more about how important it is to have meaningful choices about our surroundings. One young person with care experience recently reflected that the pandemic has given the general public more insight into what being taken into care can feel like:
‘Maybe others (outsiders) can have a bit more of an understanding of what it’s like to be taken into care as a young child and totally against your will…the restrictions somehow feel similar…the zero control over the matter…the lack of routine or the loss of it more like…the loneliness…the lack of stability and the not knowing what’s about to happen…I’m almost having similar feelings as to back then.’– Young Person
More than ever, having control and ownership over your own home and how you engage with your communities is vital for young people with care experience. A one-size-fits-all approach never worked well, but in the COVID-19 context supporting young people to have a say over what their support looks like is absolutely vital. The Trust believes that providing young people with a wider range of housing options and housing support services that they have helped shape should go hand-in-hand with corporate parenting duties around housing and continuing care.
Many projects have found that fostering a sense of belonging both at home and in the wider community during this time has become increasingly important, particularly as socialising and emotional connection now looks very different. Organisations have worked hard to change the support they are giving to young people and are now working in new ways to maintain that connection and feeling of belonging in this new, virtual world.
‘The larger question they [young people] would like to explore is: What creates a sense of belonging in a community? They discussed wanting to be understood and how feeling like they were part of the community could alleviate some of their loneliness and isolation.’ – Staff Member, Barnardo’s
With so much time now spent in the home, it is even more important that young people are supported to fill their homes with furniture and decorations that are chosen by them, and which have personal meaning and are suited to their needs. Engagement in community and support activities likewise need to be tailored to the needs of young people, allowing them to engage in ways they want and dip in and out as necessary.
For some young people, virtual engagement is itself a barrier that projects and professionals have worked hard to overcome. For others, however, the shift to virtual engagement has made this easier. Travel barriers are essentially removed, and they can turn on or off video cameras at will.
‘Normally I would have never gone to the groups but it’s really helped and during the lockdown we’ve all been in touch and chat when we’re down and check in on one another so that’s been good while I’m staying [by] myself.’ – Young Person, Barnardo’s
What we have already seen again and again is that each person’s needs are specific to them, and supports have to be flexible enough to meet those different and often changing needs. This flexibility is evident in the range of Home and Belonging projects funded by the Trust.
We’re currently evaluating the Home and Belonging initiative and look forward to sharing some interim findings later this year. Some things, however, are already coming through loud and clear. Now more than ever we know it was never just about a place to live.
Celeste Berteau, Evidence and Influencing Co-ordinator Life Changes Trust
During lockdown it’s been so interesting to notice the growing awareness that it’s ok to acknowledge our vulnerable moments. At Life Changes Trust, we’re quite a small team and we’re lucky that it’s possible for us all to work from home. It has its benefits, especially in terms of cutting down the time spent commuting (none of us miss overcrowded trains and buses), but in our own different ways we are all missing the human connection that comes from gathering together in an office space.
Those brief conversations waiting for the kettle to boil – holiday news, exercise goals, wedding plans, family achievements, film and book recommendations – these are the things that help us to feel connected to others and to be acknowledged as a human being. Keeping that connection going virtually is harder, but the fact that we all know it’s ok to say that it’s been a tough week is important. Sometimes we all need to feel acknowledged, to know that others both see us and truly hear what we are saying.
For our beneficiaries, tough weeks can be the norm. Young people with care experience are all individuals with unique talents, skills and potential. As a group, they also face significant challenges. At the Trust, we believe that in tackling these challenges it’s important to invest directly in young people and get alongside them.
As a funder, making individual grants available to our beneficiaries has been an important aspect of this. We think young people themselves are best placed to decide what can make a difference to them and we believe that they should have choices.
So, when COVID-19 struck, we worked with our Advisory Group (who all have their own experience of care) to design an individual grants offer which could mitigate the effects of lockdown. The idea was to offer something distinct from emergency funding (although we made contributions to these funds too), with a focus on supporting physical and mental wellbeing during lockdown. We called it the Keep Well Fund.
It’s fair to say that we were inundated. We received well over 800 applications and many of them were tough to read. It was sobering to see the confirmation of much of what we already know – that young people with experience of the care system are affected by inequalities in relation to health, income, digital access, housing and other areas of life. It is vital that we acknowledge this reality and let young people know that we see and hear them. Often they do not have access to the same networks of extended family and community that many of us turn to. The risk is that young people feel invisible.
We have paid close attention to what young people have told us through the Keep Well Fund. It’s been a privilege to have a glimpse into their lives. It’s also been humbling to read about the creativity and determination of young people not to allow the pandemic to pull them under. Almost without exception, young people have been very honest about the impact of lockdown on their mental health. By providing funding for things like fitness equipment, bicycles, tablets, arts materials, garden equipment and musical instruments we know that in a small way we are helping combat the mental health challenges. We also understand that just knowing someone out there is listening and cares enough to make an offer of concrete support can be equally important. We are so appreciative of the funders who stepped forward to demonstrate that they care – the William Grant Foundation, the Cattanach Trust, the Esmee Fairbairn Foundation, Cycling Scotland and Inspiring Scotland all provided funds to help us reach more young people.
Through the Keep Well Fund, young people with care experience have communicated their sense of isolation even when living with carers, partners or children. Through our work at the Trust, we know that relationships are fundamental to creating long-term change for young people with care experience. By funding programmes such as mentoring and offering opportunities for young people to get active and creative in their communities we have steadily been working to expand the networks around young people. Our Champions Boards, now active in 21 Local Authority areas across Scotland, reach out to young people and create a variety of opportunities to get engaged. Through our Home and Belonging initiative, we’re learning more about what’s needed not only to make sure young people have a roof over their heads, but also how to help them feel that they belong in their communities.
The global Covid-19 pandemic of 2020 has starkly demonstrated the volatility and uncertainty of our world. It has highlighted the inequalities that continue to stifle potential and limit quality of life – and threatens to deepen these inequalities. It has also showcased the determination of the human spirit and our capacity to care for one another. Young people with care experience have remarkable resilience, creativity and capacity to connect. When this is combined with the commitment and passion of the people around them – carers, key workers, mentors, youth workers, social care staff, health professionals, volunteers – collectively we have the potential to create a powerful human network. Through this network and others like it across society, there is a real opportunity to think afresh about the type of society we want to live in. A society which keeps all of its people well.
Carole Patrick Director of Evidence and Influencing (Care Experienced Young People)
The Life Changes Trust funds five peer support initiatives across Scotland. This funding came about because peer support is something which people living with dementia and unpaid carers say they most value because of the positive impact it has on the person with dementia and unpaid carers. Peer support can help keep people more socially connected, giving them confidence and motivation to participate in their communities. It can also help them to feel valued by being listened to and being able to help others with similar experiences. Peer support builds on the skills and knowledge that already exist in the community. Each project was given five years funding in 2015.
This evaluation, conducted by The University of Stirling, has the following aims and objectives:
to determine how peer support benefits both individuals and society
to explore what constitutes good practice when delivering peer support
to share evidence to promote greater awareness about the benefits of peer support and what works for effective peer support
Researchers at The University of Stirling have reviewed self-evaluation data provided by the five projects, funded by the Life Changes Trust, who deliver peer support. They are also conducting new research at four of these projects to engage staff, volunteers, people receiving support and partner organisations.
Peer support enables people with dementia and unpaid carers to live better lives and remain socially connected. A video has been created to highlight the different ways in which unpaid carers and people with dementia benefit from this social connection – watch it here. Social connection is layered. Attending peer support groups helps to build new relationships.
Contributing in these groups builds confidence and helps people to be involved. Sometimes this involvement extends outside of the peer support group. Fuller participation and sense of involvement comes from sharing responsibilities and helping to sustain the group.
In the coming months, we will be investigating these and other benefits through conversations and discussions with people living with dementia and unpaid carers who access the peer support projects. We are also meeting with staff and volunteers at the projects and staff from partner organisations who have worked with the projects.
This research will enable us to find out how people experience the support and understand what works well, or less well, for them. We want to learn lessons about ‘what works’ and share this information so that peer support can be as successful as possible for people with dementia and unpaid carers in the future.
The method adopted by the evaluation has been to recruit several ‘Community Researchers’ who would carry out the fieldwork in conjunction with academic staff at The University of Stirling. These volunteers were recruited from within the dementia community, being carers or individuals who had some connection to dementia.
Recruitment has not been an easy task, especially retention of volunteers who are actively involved in caring for a person living with dementia. More will be said about this later. A range of skills was sought and achieved. Several of the volunteers were trained researchers who had been involved in previous projects about dementia at The University of Stirling and have skills necessary to carry out the fieldwork. Others were already volunteering in a dementia-related project and were committed to helping where they could in researching the condition and how life could be improved for those living with dementia.
Each brought with them life skills from previous employment and volunteering such as communication skills, project skills and creative skills.
An initial introductory meeting was arranged and then a follow up meeting, where volunteers gained some knowledge of the project objectives and methods. Initially there was a high level of commitment but, due to caring commitments and the pandemic which hit in March 2020, there was a level of drop off, particularly among volunteers actively involved in caring.
Fieldwork and the Pandemic
Four projects supported by the Life Changes Trust have been identified for fieldwork. There was much discussion among the researchers about which creative methods were best to evaluate the effectiveness of peer support in each of the projects and many face-to-face, group and socially inclusive methods were identified.
All of these face-to-face methods were excluded due to self-distancing rules introduced in March 2020. The project has carried on, however, with researchers meeting online and continuing to identify methods now based on online techniques that can be conducted safely at a distance. (See ‘Lessons Learned’)
A personal observation here was how the project reacted to the pandemic. What was essentially a project about connection with dementia projects and creative methods for evaluating them became, due to the pandemic, an exercise in remote working both among the volunteers and with the projects. Essentially the evaluation project did not change but has become different in its methods of engaging people in research. In addition, we learned a lot about setting up projects like this and making them more robust against unforeseen risk.
Lessons Learned (so far):
(1) It is important to be mindful of existing commitments that community researchers may have at the recruitment stage. This is particularly true where potential researchers are interested in a subject like dementia as a result of personal experience of living with or caring for someone with dementia. Where a potential researcher does have caring responsibilities or a long term health condition, they must be actively supported to engage with the research in a way that works for them. Ultimately, though, they may feel they have to step away from the project.
(2) There are lots of creative, non-contact methods available for engaging people at a distance which are available and published on sites such as org. We were particularly impressed with a video by artist Lydia Beilby called “Create Your Own Living Archive” https://www.youtube.com/watch?v=U2Zt-tYC-V8. The techniques described in the video can be adapted to evaluate peer support within projects using such creative methods.
(3) A risk register can never be too detailed or “out of the box”. We missed the possibility of a pandemic but, at the time the project started, if we had considered it we would have rated the probability very low and impact extremely high and, I am sure, we would have decided to live with the risk. As it happened, a flexible approach to project methodology has allowed us to react to the pandemic and create new methods to carry on with the project.
(4) One of the major lessons learned is “learn the lessons”. Many of the new methods developed out of necessity will be useful in future research and will be written up, developed and used in future studies regardless of the situation. We also hope that the methods we use for engaging research participants online will be useful longer-term for the peer support projects who may find the creative resources adopted in the evaluation useful for supporting and delivering peer support at a distance.
Carrying out an evaluation during the pandemic will allow us to gather unique insights about the role of peer support and factors influencing its delivery during a period of acute crisis, what this may mean for peer support, and its effect regarding loneliness and social isolation.
Dr Paul Lyden is a retired IT consultant and Project Manager. He became involved with dementia when his oldest friend was diagnosed with the condition. Paul volunteered with Alzheimer Scotland at an allotment in Dumbarton as he is a keen gardener. He still works at the allotment (pandemic permitting). Paul has a background in research and is keen to get involved in research which might help. He is volunteering as a Community Researcher.
Dr Jane Robertson, Lecturer in Dementia Studies in the Faculty of Social Sciences at The University of Stirling, is leading this project. For further information about the evaluation, please contact Jane at firstname.lastname@example.org
For the past six years, the Life Changes Trust has worked with people with dementia, unpaid carers, organisations and individuals to promote a whole life approach to dementia. A ‘whole life approach’ means looking more closely at all the different aspects of a person’s life that are important to them and doing everything that can be done to ensure these do not disappear with a diagnosis of dementia.
We have also advocated for a stronger human rights-based approach to dementia, that puts flesh on the legal and policy framework in Scotland in order to bring it to life. We are pushing the boundaries of the human rights-based approach so that people with dementia and unpaid carers can clearly see their rights being fulfilled in practice.
On 22 June 2020 we will publish a suite of documents entitled ‘Dementia: A Whole Life Approach’. This is a resource for anyone looking to learn more about dementia, human rights and community. It features the work of many organisations across Scotland and will, we trust, inspire more good work.
A key feature of our approach has been reframing discussion and language about dementia. We have emphasised the fact that people with dementia are citizens and rights holders, not just patients or service users. When the Life Changes Trust was first established, a medical model of dementia was still predominant and people were exploring more actively what a social model of dementia should look like.
In 2015, the Trust funded a series of workshops with the Joseph Rowntree Foundation which became known as the VERDe Network. This network was fundamental to the development of the DEEP (Dementia Engagement and Empowerment Network) in the UK. As people with dementia met and spoke together they agreed that they wanted to live hopefully, be treated well and with respect regardless of age or ability, be able to give and receive support, and participate as fully as possible in their community.
Since then we have seen many of these hopes become reality for thousands of people living with dementia across Scotland. We commissioned independent evaluation of the impact of work funded by the Trust and will provide multiple opportunities over the next few years for people to share in that learning.
Then, in spring of this year, there was COVID-19.
The dementia ‘world’ has been significantly impacted by the pandemic, and will continue to be so for a long time to come. On the one hand it has been astounding to see how quickly communities and many organisations have adapted to meet needs, nurture relationships and provide support in new ways.
On the other, some of the media narrative around people with dementia and COVID-19 threatens to take us back to a medical model that focuses on the condition more than the person, labelling people living with dementia (and older people) as ‘the vulnerable’ regardless of the state of their general health.
We understand why the government has restricted some of our human rights, e.g. right to liberty and right to respect for private and family life. It is clear that these are for reasons of public safety and to secure the right to life.
There is, however, some real apprehension about what the longer term will hold for people with dementia and unpaid carers as we work through the phases of easing lockdown restrictions. For some there is a fear that they will be labelled ‘the vulnerable’ and treated differently from the rest of the adult population.
What can we do to address some of these fears?
Be careful with the language we use
We have become familiar with phrases such as ‘protecting the vulnerable’. When we talk about ‘the vulnerable’ or ‘the elderly’ or ‘the disabled’ we are treading on dangerous ground because we risk stereotyping and making assumptions. This can be disempowering and may unwittingly create distinctions that are unhelpful: the vulnerable and the strong; the protected and the protector; those who sacrifice and those who are saved.
The reality is that, while there are some people who may be more vulnerable to the effects of COVID-19, any one of us could find ourselves in a position of vulnerability due to the virus. Therefore, it is better to use language that talks about the collective steps we are taking to protect our community from the impact of COVID-19. This language is more inclusive and frames the conversation in a different way. It makes COVID-19 a community matter rather than a problem for some more than others.
Restrict human rights only where absolutely necessary
There is a reason why the European Convention on Human Rights protects respect for private and family life. Personal identity, friendships and family can help anchor us. If our ability to access these aspects of life in a meaningful way is disrupted for too long – even for the best of reasons – our perception of self and our abilities can be severely affected.
It is encouraging to see that the Scottish Government has been using the phrase ‘physical distancing’ as opposed to ‘social distancing’. If anything, COVID-19 has increased the need for social connection and this has been borne out by the number of people who have contacted helplines run by organisations such as Age Scotland and Alzheimer Scotland.
One common theme in all of the work funded by the Life Changes Trust is the importance of relationships for people with dementia and unpaid carers. Relationships help restore lost identity, recognise shared humanity and create the conditions needed for a person to thrive. People with dementia and unpaid carers have a right to these relationships and as we move into the next phases of easing restrictions we must do four things. We must:
listen to what people with dementia and carers are telling us about how they are feeling;
listen to their suggestions and proposed solutions;
after listening, fully consider and implement ways of working around necessary restrictions or requirements;
challenge unnecessary restrictions or requirements.
Focus on enablement more than risk
Enablement and risk management are two sides of the same coin. However, people with dementia and unpaid carers need us to focus more on enablement or, in some cases, reablement. We are seeing first hand the effects of lockdown on people with dementia who are usually out and about and involved in dementia activism. They are noticing the difference themselves and are concerned that their dementia is becoming worse. They are afraid that their confidence has gone and will not return.
An enabling rights-based approach says ‘you have a right to quality of life and deserve to do more than merely exist before, during and after COVID-19’. There are many initiatives across Scotland doing just that. They are helping people with dementia and carers navigate the restrictions of COVID-19 by teaching them to master online meeting spaces; providing telephone befriending and opportunities for peer support; sending (and receiving) handwritten letters; delivering arts and craft materials; chatting at a distance through the window; creating safe opportunities for singing or reminiscing or taking part in virtual walks; or starting each day with dementia-friendly exercises.
A number of project leaders that we have spoken with say that COVID-19 is increasing the variety of ways that people with dementia can be engaged and enabled. Their work is growing and developing rather than shrinking during lockdown. This is particularly the case where communities are pooling their resources and working together in new ways.
We must make time to reflect and learn from COVID-19
COVID-19 is providing us with an opportunity to test how strong the roots of our human rights-based approach to dementia in Scotland actually are. After all, trees need strong winds to help them mature and grow stronger.
We have seen some excellent examples of rights-based practice in action, and also some examples of rights being set to one side in the name of expediency. This is a real opportunity for learning and growth, which occurs at a good time when the Scottish Government is looking at refreshing its National Dementia Strategy and a number of local dementia strategies are being drafted by Integration Joint Boards.
A number of the evaluation reports for Life Changes Trust funded projects will now also examine how projects, people with dementia and unpaid carers were affected by, and responded to, COVID-19.
As we all gather the valuable evidence we have and reflect upon it, we will be in a position to share learning and strengthen our human rights-based approach in Scotland for the future. It is unlikely we will have an opportunity like this again in our lifetime.
It’s not unusual for people to feel a little bit wary of the word ‘technology’, especially as we live in a world where there seems to be something new and ‘wonderful’ coming to the market every day. It’s difficult to keep up.
It would also be easy to be sceptical of the idea that technology is something that can help and support older people, including those living with dementia, to stay connected, yet independent and able to live in their own home safely and for as long as is possible.
But what do we mean by technology? Yes, some of it sounds complex but some ‘technology’ is simply adaptations of things we use in our daily lives.
To start with some quite sophisticated examples, recent news reports tell us about technology that is developing to help people living with dementia, such as PARO, the robot seal from Japan. PARO is said to have potential to be a companion and empower people to be more socially interactive.
Robear is a nursing robot touted as a gentle bear that is also strong enough to lift an elderly person.
Developed in Sweden, ‘Giraff’ is a human-sized, mobile telepresence robot that enables people outside the home (or care home) to interact virtually with people they know but who are not physically present.
Closer to home, the virtual reality (VR) social enterprise Viarama uses VR to help care home residents enjoy experiences they would not otherwise be able to participate in, such as exploring under the ocean or climbing a mountain. Connecting Communities’ ‘Windows to the World’ project uses linked, interactive screens to connect dementia friendly communities across the Highlands so that, together and separately, they can access a range of creative pursuits and therapeutic interventions.
These are examples of relatively complex technology, yet they are reported to be having enormous benefits for people living with dementia.
Of course, there are more simple examples, and these are the things that more people could be taking advantage of, as many of them are adapted from items we use in everyday life.
Many of us know about Tele-care for use in the home such as GPS trackers that enable people to get out and about, talking clocks, motion sensors, call blockers, ipads, MP3 players (Playlist for Life) – and the list goes on.
Ron Coleman, who has mild cognitive impairment and lives in the Western Isles, has found Amazon’s Alexa to be immensely helpful. So much so, that he is writing a peer-to-peer resource – ‘Alexa and Me’ – to assist people living with dementia so they can benefit from Alexa too (due to be published by the Trust later this year).
Yet there are still many families living with dementia who are in the dark about the benefits – and ethical implications – inherent in these increasing opportunities to use technology to improve lives.
In 2019, the Life Changes Trust published a ‘Dementia and Technology’ report, commissioned and funded by the William Grant Foundation. The purpose of this report was to a) publish findings on the evidence base for assistive technology for people with dementia and their families living in the community; and b) provide feedback from focus groups with people with dementia and unpaid carers on how they are using technology and what the perceived barriers might be. The full report is available here.
The report found that the academic evidence base is weak, partly due to the number of studies and partly to the sample sizes. Unsurprisingly, the focus group research showed that no two people with dementia had the same technological needs. Participants had both positive and negative views about assistive devices and overall the groups were very open to the idea of using technology.
However, several barriers to uptake were identified: lack of knowledge and familiarity with technology; stage of dementia; cost; lack of time; denial of dementia symptoms; complexity; confidence in abilities; lack of support; and past technology engagement.
The most prominent reasons for non-engagement with technology were lack of information about the available products and lack of support. People wanted to be shown what to do and supported longer term with the product. As one carer said:
“…it’s incredibly difficult if you’re on the phone trying to discuss a technological problem. It’s very, very difficult. You really need to sit down with somebody and hold the piece of technology…”.
Dementia Circle is an excellent project funded by Alzheimer Scotland which supports people to test products and report on their experience. This has led to the development of a product list of recommended products and apps.
Scotland’s Technology Charter for People Living with Dementia is clear that technology should augment, but not replace, human intervention. Many people are concerned that ‘PARO’, ‘Giraff’ and similar technological solutions are a substitute for much-needed face-to-face interaction.
Scottish Care has led work developing a human rights-based Charter for Technology and Digital in Social Care. This is important and very necessary work as we grapple with the ethics of technology. The hope is that human-rights-based principles can provide some definition in a world that is becoming increasingly blurry in respect of privacy, choice and human relationships.
The work – which included developers and designers, providers and practitioners, residents and citizens who use social care supports – resulted in the recently published Guidance Document for Human Rights Charter for Technology and Digital in Social Care. This Guidance outlines 17 human-rights-based statements and suggests how they can be used to support the human rights of individuals and communities in the use of technology and digital in social care. They have been designed to foster discussion and to promote further reflection.
Following the publication of the ‘Dementia and Technology’ report, the Life Changes Trust and the William Grant Foundation are holding a conference in Glasgow in partnership with Alzheimer Scotland and Scottish Care. If the matters outlined in this short blog are of interest to you, then please sign up for this free conference where you will have the opportunity to further explore and consider them. This event is delivered in collaboration with William Grant Foundation, Alzheimer Scotland and HammondCare,
The conference will comprise of a number of short plenary presentations and practical workshops. There will be plenty of time to explore exhibits and at the end of the day a technology competition, funded by the William Grant Foundation, will be launched.