Champions Boards: Giving young people a voice

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Last week I was lucky enough to be part of a special day in Edinburgh, marking the journey so far of eight different Champions Boards from different parts of Scotland.

Care experienced young people, and staff who are passionate about giving these young people a platform, got together to celebrate the award of funding from the Life Changes Trust. The young people led the day, sharing their experiences of Champions Boards so far and their ideas for the future. The energy, drive and determination in the room was palpable. So was the air of competition, as various folk took part in our giant jenga challenges……

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…and vied with each other over the most outrageous get-up for the photo booth! 

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So what’s all the fuss about? Why do Champions Boards matter so much? On the face of it, Champions Boards themselves might not seem like an especially radical idea. They bring together senior representatives of services and agencies in local areas who have responsibilities for young people who are in care and care leavers, and get them round the table with care experienced young people. The aim is to improve services and supports on the ground, so they have a much better opportunity to achieve their potential. So far, so what?

The thing is, we know that when people who make decisions about budgets and services hear directly from the people on the receiving end of those decisions, magic tends to happen. Issues that might seem abstract suddenly become very real and powerful, when a young person explains the debilitating impact of twenty placement moves or the horror of being separated from a much-loved brother or sister. The sense of apathy and/or fatalism which can pervade the discussion falls away and is replaced with a desire to act.

The stark reality is that young people growing up in care are still very much caught in a system, and systems are not famous for their ability to listen and respond to the needs of individuals. That’s why at the Life Changes Trust we’re excited about the possibilities presented by Champions Boards. We think that done well, they can create a much-needed space for care experienced young people to have a voice, and, just as important, to be properly heard by the people who are responsible for their care and well-being.

Please note the phrase “properly heard”. Listening is a fine art, and we’ve all experienced people in positions of power who haven’t listened to us. The GP who does not take our health concerns seriously; the head teacher who will not agree to a few small adjustments to the school day for a child who is struggling; the boss who moves us to an evening shift even although there’s no transport available in our town to get us to work at that time.

Listening to people, acknowledging their concerns and creating the space for them to be involved in developing a solution takes time and effort. It also takes a particular value system – you have to believe in people.

Anyone who took part in the event last week, and watched the young people doing their thing, could be in no doubt about the potential of Scotland’s care experienced population. However, those who run services and make decisions about budgets are often under huge pressure – they’re supposed to have all of the answers, and to act quickly. We should not underestimate the challenge of changing this culture – working collaboratively, taking the time to genuinely get to know young people and to create opportunities for them to lead is a radically different approach.

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By investing in Champions Boards, we are recognising that not only do care experienced young people need to have many more opportunities to develop their confidence and speak out about issues that matter to them, people in decision-making positions also need to sharpen up their listening skills and remember their accountability to the young people sitting in front of them.

It’s no longer good enough to say that the problem of challenging poor outcomes is too great. There is a huge wealth of talent, experience and passion for change amongst care experienced young people in Scotland. There are also so many people involved in running and delivering services who want things to change. Champions Boards are spaces to harness the collective abilities of young people, staff and senior decision-makers. They have grown out of the belief that things can and must improve, and care experienced young people must be at the heart of creating a new reality.

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Carole Patrick, Programme Manager, Care Experienced Young People Programme

North by North West – travelling with dementia on the Isle of Lewis

This post was written by Andy Hyde from Upstream, an organisation which aims to bring people affected by dementia together with those providing mobility services, to share their experiences, insights and ideas to develop and deliver new training experiences for mobility service providers in Scotland. 

 

Stone bus shelter

It’s a bus shelter. No, seriously, it is.

It’s called a Four Winds shelter and when you see it standing in a wind-swept spot, in the middle of the Isle of Lewis, you begin to see why. No matter what direction the wind blows from (and it can really blow) you’ll find a sheltered spot somewhere in there.

Paula Brown, who was taking me on this tour of the Island’s more remote transport links, leads the Life Changes Trust Dementia Friendly Communities project at Stornoway’s arts hub An Lanntair.  Among many other things, they are using creative approaches and ‘…co-designing techniques for engaging with people living with dementia, their carers and the wider community’.  One of the related projects involves primary school children mapping and exploring their routes to school. Some visiting artists had recently travelled the island’s bus routes and they are currently developing art installations for these very bus shelters…

We had already visited Staran, a community interest company that provides all kinds of services locally including gardening and transport. They have an impressive fleet of minibuses and adapted vehicles. One of the volunteer drivers Ken was just off to the local care home, so he offered me a lift and we chatted about how Staran transport was increasingly being used to take older and disabled people to medical appointments as well as errands around town and social outings too.

At Blar Buidhe care home, just on the outskirts of town, Ken met his passengers and Paula introduced me to Peter the care home manager. Peter has a wealth of experience in keeping the residents active and connected with Island life. We talked about mobility in older age and the challenges of simply getting in and out of vehicles. We heard that the home’s minibus is a lifeline and in constant use – and yet, some aspects of adapted vehicles could be better. Those yellow strips showing the edges of steps might be a perceptual problem for some people with dementia. Perhaps a solid block of yellow might be better? Could minibus adaptation include design, creating a better environment to travel in? We weren’t sure…

I had a go on the wheelchair lift into the back of a bus … those yellow stripes again.

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The Alzheimer Scotland resource centre in town was the next stop – this is where a group gathers regularly to share information, have a cup of tea and generally tap into local support. We had some lovely conversations and noticed a taxi or two pulling up outside. We briefly chatted with one of the drivers  – yes, they regularly drop off here but no, not aware of guidance on the needs of people travelling with dementia. We need to point them to the SDWG film...  (Travelling with Dementia).

Alzheimer office

And now we were heading north and west of Stornoway, stopping at bus stops and taking pictures…

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Some of them are pretty remote and we were wondering – why no timetables? Not even a bus number in some cases. Somebody else had been wondering too…

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Back at Lanntair we chatted these things through with David Smart, the local council’s Transport Manager. Clearly it’s a challenge, keeping information updated across a large, remote region. We learned that local minibuses provide short, circular services from remote locations, connecting people with more major island bus routes. Some of these are demand-responsive – you call and book them, so there is no timetable.

David told us about the HI Trans Thistle Assistance card and the Ferry User-Group meetings. We talked about concessionary travel and wondered if a diagnosis of dementia leads to a travel concessionary card? The answer, it seems, is ‘it’s complicated’.  Alzheimer Scotland has useful advice on driving and dementia which has guidance on free bus travel ‘If you are 60 or over you will definitely qualify. If you are under 60, you might qualify – some local authorities include people with dementia and some don’t’.

There are clearly many aspects of Island travelling with dementia to explore. Many people and organisations play a role and we need to find ways of including them in our conversations. There’s also a vast amount of local knowledge for us to tap into and maybe a different, more personal side to travelling that we might not find in other areas – drivers and passengers often know each other.

So, head buzzing with thoughts and ideas we headed back to the airport and one last bus-stop.

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Thanks to Paula for a day of thought-provoking conversations and sights – it has got us thinking about the similarities and differences we might find as we explore travelling with dementia in different areas.

With thanks to Andy Hyde.

A day in the life of a peer mentor

This blog was written by Nicky Gavin, a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  VOCAL provide both one-to-one and group peer support to carers of people with dementia. This service is one of the Trust’s 13 funded dementia peer support and befriending projects.

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Today, as I am looking after my granddaughter (which I do every Friday to allow my daughter-in-law to work), I find myself thinking about the past week.

I have been volunteering with VOCAL – Voice of Carers Across Lothian – for a year now and this has been my busiest week with them so far.

I had so much support from VOCAL when I was new to caring for my father, that I was really keen to give something back.  Then Jane Greenacre, who is VOCAL’s Assistant Director and peer mentor co-ordinator, approached me to get involved as a volunteer. We discussed a few roles and I did try working in the carers centre for a bit, which I enjoyed, but when the mentoring project was mentioned, I knew it would be better for me.

I learned so much caring for my Dad and consider myself a people person so it felt a good fit.  Going through the training programme, I grew more confident that peer mentoring was something I wanted to do as I would not be giving advice (which I don’t feel qualified to do – what was right for me and Dad might not be right for others), but telling my story, letting others take the things they want to from it, and sharing experiences.

Last week was particularly busy, as I am currently mentoring two different people and we also had a team meeting. On Wednesday, I had my final meeting with a person I have been mentoring for a while.  We met in the same quiet cafe we have used for our previous meetings and, at her request, our meeting focussed on my role as my Dad’s power of attorney, so I shared quite a lot about the practicalities of this but also how I felt doing it.

This is something I always try to do, as often my mentees have a good understanding of processes but find it difficult to use them due to the intense emotions involved.  Saying our goodbyes was quite difficult as I will not see her again, but I left feeling upbeat as she kindly thanked me for my time and told me that it had been really useful to talk to someone who has been though the same thing as she had – none of her friends had been carers before.

On Thursday I had a first meeting with a new mentee so we met in the Carers Centre (first meetings are always in the VOCAL offices). I got there a bit early to make sure I had the kettle boiled to ensure a warm welcome.  My new client was particularly interested in behavioural changes and how I coped with them.

When I talk about this, I always think back to my training and am mindful of identifying the learning from my story, the positives, and the things I would do differently.  It might not be too helpful to share all the struggles I had without providing some light at the end of the tunnel!

The meeting went well and I was pleased that said she would like to meet me again.  She had been unsure that we would have enough in common as she was caring for her husband, and I was a carer for my Dad, but she found it useful and we scheduled a meeting for two weeks time and she seemed to head off a little lighter than she came in.  A number of new clients have been concerned that my Dad’s dementia was different from their own experiences with a loved one.  That’s true, but what is common are some of the challenges that we face as families.

The team meeting was good as always. I like going to the Centre and catching up with the staff but the peer mentor team meetings are the only time I see the other mentors.

I like these meetings, as we really got on well as a group when we did our training, but also as it gives me a chance to learn from their work too. The meetings are quite structured by Hazel (the carers support worker who manages us) but she always allows us time to catch up as well and it gives us all time to reflect on how we do our work.

My mentoring journey has so far been really rewarding, and I am glad that it’s a journey I chose to embark on.

With thanks to Nicky Gavin, volunteer peer mentor with VOCAL (Voice of Carers Across Lothian)