Tag Archives: community empowerment

Dementia Friendly East Lothian: Reflections on 2014

Dementia Friendly East Lothian exists to make life better for people living with dementia. Over 2014, we’ve grown into a diverse collaborative of folk across East Lothian and beyond, all sharing a common cause and passion.  A lot has been achieved this year and I wanted to capture the essence of 2014 and say a massive thank you to everyone who has been part of making it happen.

It all started with a simple question: What’s it like to live here if you have or care for someone with dementia? What’s it like going shopping, meeting friends, getting a haircut, having a coffee?  Where are the good places to go are if you have dementia? Across the board, whether it was going to the farm shop, visiting a stately home, or going to the vet or a gym, it’s clear; it’s people that make places and services dementia friendly. A warm smile, patience and understanding if things go a bit awry or take a bit longer than usual, and respect are what make the difference.

In our conversations across  East Lothian,  themes soon emerged.  Just like everyone else, people with dementia  want places to go, friends to see and things to do.  They want to keep active; have meaningful lives and be connected across generations and across the community. People living with dementia want to keep on doing the things they do every day for as long as possible. They want to be respected and valued members of the community. People want to live with dementia.

It’s clear that dementia friendly places and services are here already across our communities, we know what they look like, so how do we make them happen everywhere?

Dementia Friendly East Lothian works on the simple fact that people make change happen, very often despite everything. We are all about people. We open and grow conversations which engage people in communities, shops and businesses to talk about dementia. We chap on doors, we talk about our experiences of dementia as we go about our business in the communities we live in. We work with local media, organisations and networks to take the conversation wider and deeper into communities.

As the buzz about dementia grows, local people get in touch to find out more or ask what they can do to help.  Community events draw folk in to share their views and experiences and find out more; people share pictures and ideas via our Facebook page. Others want to get involved and we talk about what dementia friendly means to them. We go with the flow of the community and allow time for word to spread through local networks. Local champions and leaders emerge and get active, things start to happen.  Dementia Friendly East Lothian  simply helps to keep the conversations going, make links and do whatever we can to oil the wheels from taking the note at a meeting to doing the washing up after an event.

Over the last year, 9 communities have expressed an interest in becoming dementia friendly; 6 are now actively engaged in local conversations, 4 have had community events.  We’ve got over 400 followers on Facebook and an e mail list of over 200 organisations. Local papers have featured Dementia Friendly activities regularly though the year and we’ve been covered by local radio stations.  In November we held our first collaborative learning event where people from across East Lothian came together to talk about what they’ve been doing and what we can do next.

The buzz has turned into action and life is getting better for people with dementia:

  • People with dementia told us that they lost contact with friends when they went into residential care. Now care homes in North Berwick take residents round to each other for  tea so friends can stay in touch.
  • People with dementia wanted things to do and places to go. North Berwick and Haddington libraries set up drop in cafes and Sporting Memories groups and have done dementia training to make their services  accessible to everyone locally.
  • People with dementia wanted fun and laughter with their friends and family: Luminate gave us money for 2 community events in Haddington and North Berwick Day Centre  for over 100 older people, many with dementia, and their friends.
  • People wanted better links with other generations:  Strive, Dunbar Day Centre  and Dunbar Grammar School organised an intergenerational tea dance. In Haddington, pupils from Knox Academy organised a Christmas Carol Concert with Haddington Day Care Centre. North Berwick Brownies regularly visit Fidra Nursing Home and other Brownies are planning to visit other local care homes

There’s lots of great things in the pipeline from community cafes to sponsored walks to swimming sessions and local people and organisations are raising funds to support dementia friendly work in their own community. People are accessing training on dementia and using the new Dementia Friends scheme. And that’s on top of the great work that’s already going on in Day Centres, Care Homes, schools, libraries and churches up and down the county.

So what about 2015? There’s work to be done to strengthen the voices of people living with dementia so they have a greater influence and say on the things that matter to them. Some communities across the UK have local forums where people with dementia come together with decision makers and service providers to improve things. That might be an option for East Lothian too. Our Dementia Friendly Communities are growing apace and Dementia Friendly East Lothian is there to support them and new communities be the type of Dementia Friendly Community they want to be. We help communities share experiences and learn from what’s being done in East Lothian and beyond.

The best thing about 2014 has been seeing the wellspring of generosity of spirit of people across East Lothian to make a difference; to make life better for their friends, neighbours and communities in whatever way the can.  People have given their caring, their time, energy, creativity and money to make things happen. New relationships and understandings have been built. And we have done this ourselves. This is not a top down initiative, it comes from the heart of our communities, we are making this happen because we care.

A massive and heartfelt thank you to everyone who has done something to help make East Lothian a bit more dementia friendly this year. Whether you’re picked up a leaflet, baked a pancake or tiffin, spent time with someone with dementia, done some dementia training, smiled a bit more or become a dementia friend, thank you for helping to making our world a better place.

Wishing you all a very happy and healthy 2015. May it bring you everything you’d wish for yourselves. And of course a year in which East Lothian will become even more Dementia Friendly!

Suex

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Creating A Dementia Friendly World

For the last few months a group of us have been working to set up Dementia Friendly Towns in East Lothian – starting with North Berwick. Dementia Friendly places are springing up in quite a few locations. Up north, there’s Dementia Friendly Highlands. In Swansea and Brecon in Wales, Dementia Supportive Communities are being set up. Motherwell, Stirling, Edinburgh, York and many more towns and communities are embracing the idea of being Dementia Friendly.

Just as each and every place is different, so the approaches vary.  In Dementia Friendly Highlands and Swansea for example, local people with personal experience of services  have been the driving force behind the initiatives, they know just exactly how good or bad local their services are from direct experience and they know what is needed to make them better. They’ve  created local forums where GPs, councillors and local people get together to make improvements. The focus is on better services but through a whole community approach. The priority is that a diagnosis of dementia doesn’t mean a life cut off from everything around you, and people are helped to continue to do the things that give their lives value and meaning for as long as they wish to.

Other Dementia Friendly initiatives are led by Local Authorities, NHS or  third sector bodies like Alzheimer’s Scotland, The Dementia Services Development Centre at Stirling,  or the Joseph Rowntree Foundation and have involved training local shops and businesses and advertising campaigns to raise awareness and challenge stigma.  Dementia Friendly communities, towns and cities have done a lot to raise local awareness and thinking about what life is like for people with Dementia, their unpaid carers and families.

In North Berwick, we’re taking a very local, community-led approach. We think that  improving the quality of life for people with dementia is very much dependent on the quality of everyday life in the community. Shopkeepers, business people, churches, coffee shops, sports clubs, all the places we go everyday can do a lot to make life for people with dementia and their carers easier. This will help people keep in touch with their friends, doing the things they like doing after a diagnosis. And of course, the fast pace of life and rushing about is hard for many people, not just people with dementia, many of us would benefit from giving and getting a bit of patience and kindness!

The the initiative is being led by the North Berwick Day Centre (I’m on the Committee and my Mum had many many happy times there) and the North Berwick Community Council, with great support from East Lothian Council, Alzheimer’s Scotland, Age Scotland, Sporting Memories Network and others.

We started small, simply walking round the town asking local people about whether they think we need to do more to support people with dementia in our community. Along with the help of our local Community Learning and Development Officer Sandra, I’ve been chapping on doors up and down North Berwick High Street and beyond telling people about our hopes and aspirations and asking for their support.

It’s been a touching and humbling experience. I started off talking to the people that helped me and Mum through our journey – GPs, Dementia Nurses, Pharmacists, housing providers and of course the Day Centres and Care Homes. I just nipped into shops and businesses when I was out and about. The shoe shop where daughters often take their parents with dementia to buy shoes; the post office and the postal delivery office (there were days before we got Mum and Dad to live near us when the only person they say for days on end was the postie); the library, the bakers and the coffee shops where people pop in during the day. Dentists, opticians and the physios also said that they often wondered if patients and clients had dementia and what could they do to help, they often had long standing relationships with people over many years and knew them well.

I found knitting circles in the pub and tea dances in the Hope Rooms; local school pupils designed us flyers and logos and walkers and gardeners all  want to do their bit. So many people I’ve spoke to have been personally touched by dementia in some way and wanted to help in whatever way they can.

The messages are clear and simple – people with dementia want to keep in contact with their friends and keep doing the activities they enjoy, but it can be hard.  People told us that there are things we can do that will help keep these precious bonds and relationships in place even when the going gets tough:

  • opportunities for people across the community to do (fun)  things together;
  • transport so they can get to and fro safely and securely
  • information on dementia so people know how best to support each other.

Every single one of us wants these simple basic pleasures out of our lives, I know I will want to keep in touch with friends and keep active in whatever way I can, why do we think that a diagnosis of dementia or just getting older stops all that? It doesn’t and it’s what makes life worth living whether you’ve dementia or not.

We know from our colleagues in the Highlands and Wales that communities can come together and make a real difference, but it has to be in a way that is meaningful and manageable for local people. So to find out what people in North Berwick want, we’ve organised 2 community events on April 22 in the Hope Rooms in North Berwick. They’ll be ‘drop in’ sessions where people can come and get information and have a chat and share their hopes and aspirations for a Dementia Friendly North Berwick.  We hope it will be fun too! At the end of that day and using all the information we’ve got from talking with people, we should have a good sense of what a Dementia Friendly North Berwick would look like and how to make it happen. Over the next week we’ll be planning the drop in sessions, arranging publicity and deciding how to make use of the many generous offers of help and support we’ve had. 

Then all we have to do is to weave these good wishes and warm hearts into a beautiful tapestry of community connections and caring and help other communities have their conversations too – Simples!

Luckily we have the support and experience of our fellow travellers in Highlands and Wales to guide us. The Dementia Friendly movement shows clearly how local communities can make things happen and be part of a larger movement so that good things happen everywhere. This isn’t scaling up or rolling out, but learning , sharing and growing.  And of course, it’s not just about dementia, it’s about all of us being connected to our communities, whatever life and the ageing process send our way. 

Have a great week.

 

Take care

Sue

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Doing things differently

Insanity: doing the same thing over and over again and expecting different results. Albert Einstein

I was at the Strive (our East Lothian Third Sector Interface) conference this week; it was all about doing things differently. A great day and it really got me thinking for the umpteenth squared time: why is it so hard to change? Even when we really, really want to change the world and make great things happen and we get the logic and sense of it all, even with all that, why is it so hard? We talk a lot, read a lot, go on training courses, draw, sing, get creative and then revert to old habits, often with a hearty shove from the cultural, electronic, process ridden worlds we inhabit – nudge applies to paid people not just us punters! Even when we get a clear list of simple and easy things to start doing now, laminate and stick it in front of our screens; changing ourselves is not as easy as we’d like to think.

But doing things differently is exactly what we need to do to reform public services.

Twenty  years ago (gulp!) I evaluated an innovative restorative justice pilot run by SACRO. It provided mediation for victims and offenders in lower tariff offences . Working with economists we showed that not only did victims, offenders, Fiscals, almost everyone I spoke to think it was great, but it was cost effective and gave better outcomes (yes they did exist in those days).  Despite saying how much they valued the project, Fiscals struggled to remember that this was an option and referrals were low. Despite a rigorous evaluation, decision makers didn’t fund it beyond the pilot stage. Just one of very many similar great, transformational ideas that didn’t happen.

There have been hundreds of research reports that have highlighted what stops us doing things differently. Research shows that in the public sector the key thing is that we feel empowered to change – skilled, authorised, knowledgeable and motivated.  I had to ask myself what’s stopped me in the past?

Before I left my job at the end of the year, with the heady scent of freedom in my nostrils, I started to do things differently. Why not? I had nothing to lose, what were ‘they’ going to do? Sack me? I started small, under the radar, safe. I started to share things. Obviously nothing I wasn’t supposed to, I just re set my default to share. A piece of published research I’d read; a draft of a presentation I was doing on assets sent to people who know much more than me.  The world didn’t end, sharing helped to build connections and relationships and got things moving. I read an article in the Psychologist about how to use conversations to support change. I shared and that helped me find my way to expertise in NES on dialogue.   I joined the dialogue community of practice – a growing body of practitioners in a key skill.

When I left the Government I really had to start doing things differently.  Making things happen in the community is all about making contacts, sharing visions and joining and creating networks. It’s about cups of tea, new friends and introductions,. It’s about finding your place and space in a complex world.  Talking and listening are what you have to do when you’ve no power or money, no role or job spec. All you’re left with are relationships, negotiation and influence, the ability to communicate with other human beings.

My mission is to make life great for older people, especially people with dementia like my Mum.  One of the discussions at the moment is about setting up Dementia Friendly Towns in East Lothian. The first questions is who else round here is up for it? Who’s out there with the vision, passion and the time and energy to make things happen? Where do I find people with common cause? Who can I work with?  Who wants to work with me? Everywhere I go, almost everyone I talk to wants to get involved and do something, the energy is amazing and heart warming; it’s personal and crosses professional and personal boundaries.  How do I draw this out, support and focus it to make things happen? I talk, I share, I listen, we co create.

There’s the same buzz at the Social Enterprise in East Lothian (SEEL) events.  Busy business people, whether they run social or private enterprises don’t waste time.  The SEEL events are  busy, buzzing and totally inspirational. People go because they see the value of  hearing what others are doing, sharing great ideas and supporting each other.  Networking is great for social and community business, formal meetings are often seen as a waste of time. When it’s your time and not your organisation’s, meetings look very different. 

As the Christie Commission reminded us, none of this is new. Our great public services are here already, our new ways of doing things are all around us, despite everything. Our challenge is to make new ways of doing things happen everywhere, make them our new norm. The importance of building relationships and quality conversations between service providers and patients/clients/service users is recognised and supported through things like Talking Points, Caring Conversations and Appreciative Inquiry. Without these ways of interacting, co-production can’t happen. People are already starting to apply these ‘new’ ways of talking to how policy makers and decision makers talk, going beyond just using them in the critical relationship with service users and communities.

But there’s a way to go! Conversations with communities need developed. Public servants, and that includes people in Third Sector bodies paid to deliver public services on their behalf, have to get better at having serious and meaningful conversations with communities. Not just because communities need to be engaged and involved if public services are to survive and thrive, but because if we don’t, our public servants won’t do things differently enough. I’ve got a bigger rant on that to come…

I’ve recently been seeing a personal trainer to help me run better.  I know that to do this I have to change how I run, muscle by muscle, joint by joint.  Some muscles have to stop working, others have to start. Sometimes I don’t even know I have a muscle there, so I focus on that area until eventually  something starts to twitch. It’s similar to Yoga practice and similar mind/body disciplines. To make this my new normal, I have to embed the change in my physical muscle and sinew memory through repetition.

It’s more or less the same whatever change we want to make from losing weight to stopping smoking, Changing our work habits is just the same.  Take a look at how initiatives like the Entrepreneurial Spark, Early Years Collaborative and the Improvement method in health see change and compare with what a sports coach or personal trainer would say.

  • Remember that if this was easy, you’s be doing it already
  • Define your goal and focus with the intent and attention of Mo Farah and the mindfulness of the Dalai Lama (feel free to swap heroes there!)
  • Experiment like Einstein – look at what’s worked for others, make things up, read books, share ideas, be creative, dream
  • #GODO like the Entrepreneurial Sparks – start doing things differently and see what happens, observe what works when you push your boundaries, stop doing what doesn’t work
  • Start small so mistakes are easily dealt with and so you can manage risk 
  • Keep learning, keep learning, keep learning

Dan, my coach,  says that he does things differently as a matter of course. He carries his bags in a different hand. He starts his run on a different leg. He says the discipline of doing things differently requires the focus and practice we’d apply to any other human endeavour we want to achieve. It’s quite fun to try and of course we know that the longest journey starts with the first step.

Now which foot do I usually lead off with?

Have a great week. Be different.

Sue

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Taking it personally: One woman’s mission to change her world

For many years I believed that research and evidence would change the world. I spent years doing research on how new and innovative approaches deliver better services and achieve better outcomes. I spent hours in round tables with all kinds of people talking about how we can support ‘joined up working’ and break down silos. I did and transcribed hundreds of interviews and group observations. I read libraries full of books read, summarised and disseminated them.

Then I saw the light. I was working for the Commission on the Future Delivery of Public Services (the Christie Commission) when the penny dropped. Christie showed us that great public services, person centred, effective and empowering, were already with us. Research had been telling us for years the factors that make a difference. The problem was that we weren’t paying attention.   We wanted more robust research, bigger numbers and more proof, even though the messages had been dripping through in small studies and from voluntary and community groups for many years. Why were we resisting the emerging truths? Why were we so keen to hold onto what we knew wasn’t working?

The Christie Commission reminded us all that public services are about people, and that often our best public services happen because people make them happen – despite the system.  It’s not the system that delivers the services, but people with passion and commitment and determination.  I started to take things personally and began to reflect on my experience of services; I’d been carefully keeping the two separated  (or trying to!). I got plenty of food for thought.

For the last decade I’ve been living a double life –   by day a public servant and  for the other 24 hours of the day, a carer for parents with dementia who wanted to live independently as long as possible.  I moved gradually and almost imperceptibly  from an occasional user of public services to a carer with 24 hour responsibility for loved ones increasingly dependent on a range of public services to get by.  The quality and availability of these services controlled my days and kept me awake at night.  I was up close and personal with the reality of public service delivery from the sharp end. It was quite an experience.  

What shocked me most was the complexity.  Despite having worked in and around public services most of my life, I struggled to understand what was going on. The sheer volume of different people and services we had to interact with was scary.  Mum and Dad were defined as ‘complex cases’ which meant we had input from myriad professional groups and services. GP and dental appointments, podiatrists and  opticians gradually escalated to include hospital visits, tests, assessments, treatments, reviews. We had referrals from across the Health Service and social work.

Gradually I had to deal also with banks, energy providers, the DWP, you name it.Every person needed authorised to speak with me, everyone was fixing a different bit, almost no one had a focus on the whole person. Different faces, different buildings, bus trips here there and everywhere. Being old and having dementia is a full time job! I was increasingly enmeshed in a very complex system.  When my parents had falls, the whole system ratcheted up and we added a whole new layer of concerned professionals. I struggled really hard, what must it be like if you’ve got dementia and are managing alone?  How on earth do you find your way to new hospital annexes and departments in places you’ve never heard of?  Even if there are bodies out there to help you, how do you know that? How can you change a lifetime of being independent and taking care of your own life?

I dread to think how my parents would have coped without family support. In all that complexity, confusion, fear and uncertainty the kindness of strangers shone out.  The people who took time to show they care, who understood our confusion and fear, who saw us as people – they helped us more than you can possibly imagine. Being treated with kindness and humanity made an incredible difference to my parents and me.  The world can be a very scary place if you’ve got dementia. A kind word, a gentle hand reassured and calmed my parents, helping them understand and cope with what was happening. It helped me too as I struggled to take on this new and scary role of carer.

I’ll never forget the kindnesses.

Ray, the volunteer from Age Concern (now Age UK) who helped Mum understand why power of attorney was an essential safeguard to protect all our interests. Ray spent months explaining, reassuring and helping Mum make a very hard decision. Without that power of attorney life for us all would have been impossible. Mum having an independent advocate on her side was a very powerful experience for us all.

Sue the health visitor who worked with me and Mum when Mum was opening the door and letting people in. Warning her of the dangers of opening the door made Mum very anxious and confused. Sue designed a cheery smiley sign for the back door reminding Mum to check who was there in a way that made her feel confident not scared. Feeling relaxed made Mum confident, happy and better able to understand her surroundings.

Carol from the Day Centre who helped me find my way through services and red tape and who gave Mum many happy times and awoke a love of singing which has been a great gift along Mum’s journey.

I could go on and on, Fiona, Liz, Diane, Scott. Just a very few of the many people who have helped Mum live not exist.  They treated us as people, with kindness and respect; they treated us like fellow human beings.

The worst times, which I won’t dwell on, were when Mum was invisible. There were times when people walked past Mum as she screamed in pain or sat bewildered all day in her nightie in a side ward waiting to be discharged. I really don’t blame the staff, I’m sure they are all committed, hard working, dedicated and under-valued. But what kind of system makes people like Mum and me invisible? What kind of system dehumanises us all?

So when my full time caring responsibilities abated and life shifted on its axis, I realised that if I’m serious about changing the world, I had to get out there and make things happen. Public services won’t just change on their own, everyone has to take personal responsibility for their actions and I’d done enough research and enough talking.

Time for a change.

  • I need to be part of my community, alongside the people ‘out there’ who are making change happen.
  • I need to focus on what I really, really care about – improving the quality of life for people with dementia
  • I need to focus on connecting with people, building relationships and networks
  • I need to be free to respond and react as and when I judge it to be right
  • I need to find out how far I can get in changing the world, as a citizen who wants to make things better.

So, I’m setting out to make our local communities more dementia friendly.  We’ve made a start and this blog will help me chart and reflect on my journey. I know there’s lots of inspirational people out there to help me on my way.

Wish me luck!

Take care

Sue

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