DEMENTIA FRIENDLY EAST LOTHIAN
CO PRODUCTION WORKSHOP
LEARNING BY DOING
We met on 24th April 2024 to work together to develop a plan for a new session for the Musselburgh Meeting Centre. The Centre opened just over a year ago and is already working well and making a difference. The new East Lothian Dementia Strategy incldes a commitment to develop this evidence-based approach further.
The workshop was designed to bring together a mix of people with different experience and expertise to create something special – our vision for a ‘Perfect Day at the Musselburgh Meeting Centre.’
Over 40 people came along, including Members from the Musselburgh Meeting Centre, Friendship Group and Dementia Cafe; people from the community, including St Andrews High Church and Musselburgh Health and WellBeing Group and from a wide range of organisations including Alzheimer Scotland, East Lothian Health and Social Care Partnership, East Lothian Council, NHS and Carers of East Lothian. We met at St Andrews High Church, Musselburgh, where the Musselburgh Meeting Centre meets twice a week
Francesca Lynch from the Scottish Community Development Centre ran the workshop for us. Anne Bissett from Open Arms Carers facilitated a Carer-led group and Kate Allen and John Killick from Dementia Positive facilitated a lively lived experience conversation.
WELCOME!
Allan and Pat from the Musselburgh Meeting Centre opened the event and welcomed us to their club – the Musselburgh Meeting Centre.
Francesca introduced us to coproduction:
“an approach where people with different experiences, roles and perspectives come together as equal partners to design, plan and deliver projects, services and change the world together.”
We wanted to start positive and curious. What could we make happen if we worked together? Sharing hopes, skills and resources to create a perfect day for the Meeting Centre.
‘A PERFECT DAY AT MUSSELBURGH MEETING CENTRE’
Part 1 – Different experiences and perspectives
We worked in small peer-groups to capture different views and perspectives.
People living with dementia and care-partners from Meeting Centre Members, Friends and from the Dementia Cafe who live with dementia and care-partners. What changes lives? There was also a peer-led conversation by and for carers. What do care-partners want? We call these our ‘Experts by Experience’.
People who create opportunities for creativity, play, food and fun – people active in community, play and creative arts who facilitate activities and play. What would happen at the Centre?
People who make things work – people in organisations and roles who make policies and manage and deliver services. How do we work together?
Experts by Experience
Peopel living with dementia and carers said the Centre should be for them both and focus on what they want to get from it and what works for them. It should be a ‘place to be me’ where people can talk and choose from a wide range of activities in the Centre and the wider community.
In the perfect day, Members and Carers wanted their own space in an accessible and central location. Carers wanted opportunities for their own space. It would open every day for longer hours than at present and have a garden and kitchen where people could cook. There were mixed views about who should go – should the additional day be for existing Members, other local people or whether professionals should ‘refer’ people to the Centre. The group felt lots of people could benefit.
There were questions also about how long people would wait to join the Centre? What happens after the Meeting Centre? How do people outwith Musselburgh get support? Would growing Friendship Groups help?
People who create opportunities for creativity, play, food and fun
People who create events and activities round creativity, play, food and fun came up with a diverse and exciting mix of things we could do. Of course! Their perfect day was full of creative activities and making connections. They said our Meeting Centre needs spaces where we can do things in small and large groups and connect with people in the Centre and wider community. We also needed a big kitchen and a garden. The Perfect Day ended with us all going home with a smile on our faces. We are the art!
People who make things work
People who link, manage, fund and run services and policies help us put ideas into action and deliver the 5 outcomes of the East Lothian Dementia Strategy. They gave us their ideas about the new session at the Meeting Centre. It should be for people with dementia and carers who are included and supported as equal partners in running the Centre with access to outdoors. They felt that the Meeting Centre team creates a positive environment where people can organise themselves, though some people wondered what that meant in practice.
The Group said the Perfect Day would be flexible and adapted to suit individual members. It would be at the centre of the community with strong community connections. The Perfect Day would bring benefits to more people and fill important gaps – the group felt that potentially a wide group of people could benefit. The Centre would provide support at significant points in peoples’ lives and complement the work of link workers.
SHARING IDEAS AND MAKING PLANS
What we agreed: There was a lot of agreement of what our Perfect Day would look like.
Our Perfect Day: A place..
• to be me – ‘our own place’ at the heart of the community with a kitchen, garden and outside space
• to be with people in the same boat – peers – for friendship and mutual support to manage life with dementia from people who know dementia from the inside
• to find meaning & purpose – where people living with dementia and carers can do the things that matter and are meaningful to them, accessing a range of quality activities and support in the Centre and wider community
• to be in control – where Members plan and run the Centre
• to be respected and connected – where people are respected and connected members of the community
• to get the support I need when I need it – a resource and support for people living with dementia, carers, families and friends of all ages
• to challenge stigma – that promotes understanding, challenges stigma and promotes brain health now and for future generations.
• to live and not just exist – that helps people with dementia and care-partners live well and manage life with dementia, including planning ahead beyond the Meeting Centre
There was a very long list of ideas for activities – making things, playing games, exercise and a lot of creativity. From poetry to Panto and of course having a blether! Creativity and play are serious fun, building relationships, for body and mind and improving quality of life. They can bring people of all ages together.
The Centre would be open every day, in a dedicated space at the heart of the community. It would be facilitated and supported by a trained team who ensure the Centre meets the standards of a Meeting Centre and who can be flexible and adaptable to suit the people coming along.
A tricky issue: The difficult question was who would come? So many people could benefit from coming to the Centre, including people with other long term conditions and impairments. How do we decide who would come along to the additional session? What happens to people who can’t come?
We started to look at options: Do new people come to the Meeting Centre or do current Members get more time? Should we have shorter sessions, create more Friendship Groups and encourage people to attend the D cafe – making the approach more available in a less intense form? Lots of ideas for us to explore.
LEARNING & IMPROVING
We asked for feedback. People with lived experience told us they enjoyed the event and liked sharing ideas and hearing different views. They were happy they could help.
“It was good to meet new people and discuss things, we don’t all come to the same conclusions.”
“Thoroughly enjoyed it, it was the first time at something like that. Thought it was worthwhile.”
They told us the event was too long and they couldn’t hear properly what was said. There was too much terminology, making the listening experience even harder and tiring. People wanted more time to relax and chat. We also got feedback that when they are speaking, people should say who they are.
WHAT NEXT
It was a busy and positive day with lots of agreement and questions to address. Reflecting on the event Members and Friends have told us they want to see action
“People want something to happen from the day.”
“Carers group needs more time to talk… possibly weekly meet ups or more flexible times? Drop ins?”
What DFEL will do:
- Share this report widely
- Buy a microphone and stop using jargon
- Talk to different people about ‘who comes’ and how we can benefit more people
- Develop a plan for developing Friendship Groups to increase access to the Meeting Centre approach with experts by experience and partners
- Talk with community partners to find spaces and places for growth, including more peer led suppprt for carers and a garden project with people living with dementia and carers
- Work with members, friends, Kate, John, Charlotte, Amy and Loreen to run a creativity and play workshop
- Develop plans with ELHSCP for developing in other areas
JOIN THE CONVERSATION!
Our next workshop is on Meeting Centres. We are delighted that Graham Galloway, CEO of the Scottish Meeting Centres Network will be joining Fiona Barrett and the Musselburgh Meeting Centre Members and team. Shamin Akhtar, Chair of the East Lothian Integration Board will open the day.
Meeting Centres Workshop,
Tuesday 11th June
10.00 – 12.30
The Fisherrow Centre
You are also welcome to stay on for a spot of lunch and networking
If you’d like to join us, get in touch or sign up using this link: Meeting Centres Workshop.
Thank you again and hope to see you soon!
Take care
Sue
Dementia Friendly East Lothian CIC
sue@dfel.org.uk
Phone:07727883881
Website: www.dfel.org.uk