We started the conversation about a Musselburgh Meeting Centre in late 2019 and held our first community event in February 2020 (report is HERE). Then Covid happened. Life changed and we all focussed on keeping each other and our comunities safe. Covid highlighted the real need for better support for people with dementia and carers and we re-started the community conversation on Monday 29th November 2021; back at the Brunton.
This is the full report of what happened. You can read a summary here: ADD
THE MUSSELBURGH MEETING CENTRE: CONVERSATION 2: FULL REPORT
Twenty one people from the community, organisations and groups gathered in the Brunton Theatre. A further 9 people were interested but unable to join us.
We focussed on 3 key issues:
- Who comes to the Meeting Centre
- What’s available already in the community
- Working together and collaboration
WELCOME: JANICE MACLEOD, CHAIR OF THE MUSSELBURGH HEALTH AND WELL BEING GROUP
Janice MacLeod, Chair of the Musselburgh Health and Well Being Group, hosted the workshop and welcomed everyone to the event.
Janice gave a brief outline of what has happened since the community meeting in February 2020 when we agreed to take forward work to set up a Centre in Musselburgh. Janice explained that although we often refererd to the “Musselburgh Meeting Centre’ we were talking aboout a Meeting Centre for the Musselburgh Cluster that includes Wallyford, Whitecraig and Old Craighall. Janice gave an outline of plan for the session and everyone then introduced themselves.
MEET THE TEAM
The development of the Musselburgh Meeting Centre is being done as a partnership between:
The Musselburgh Community – Janice and members of the Health and Well Being Group, Cathy McArthur as vice chair; Carolyn Wordell from The Hollies and the Musselburgh Connected Communities team led by Stuart Baxter. Janice wants to bring more groups and organisations from across the Musselburgh Area to join the partnership.
The East Lothian Health and Social Care Partnership – Christine Johnston and Lisa Olsson explained that Meeting Centres are part of the Community Transformation Project and the East Lothian Dementia Strategy. The Integrated Joint Board has agreed funding for a Meeting Centre in Musselburgh Cluster Area and the development of Meeting Centres across the county. They will be part of local post diagnostic support for people with dementia and carers.
The Open Arms Carers – Anne Bisset is a former carer who has set up a support groups run by carers for carers. Meeting Centres are for people with dementia and carers and their support is critical to developing an approach that works for both.
Dementia Friendly East Lothian – Sue Northrop set up Dementia Friendly East Lothian to help everyone living with dementia as a carer or someone with dementia to live and not exist – a promise she made her parents who had dementias. DFEL is a network that enables people to come together share ideas and influence decisions about the things that matter to them.
Outside The Box – Christine Ryder and the team are conducting the Community Engagement for the ELHSCP Community Transformation Project which the Meeting Centres work is part of. They were unable to join us as they were at Musselburgh Library that morning. You can read about their community engagement events here: ADD LINK to blog.
THE STORY SO FAR…
We began with an update on where we’ve got to so far..
WHAT IS A MEETING CENTRE?
What makes a Meeting Centre is how people with dementia and carers feel when they are there. We heard a poem about Meeting Centres – The Magic – written by Yvie George to reflect her experiences when she worked at the Leominster Meeting Centre in Herefordshire. Yvie went on to help establish Meeting Centres in Powys, Wales as part of Dementia Matters in Powys. You can read the full poem here and see a video here
Meeting Centres are designed on research and what people with dementia and carers tell us helps them live well with dementia. Centres help people deal with the challenges that come with dementia round communication, finances, relationships, changes in behaviour and so on.
Meeting Centres work best as part of a Dementia Friendly Community and when they are developed as a partnership between communities, people with dementia and carers and services.
The Meeting Centre development process involves looking at:
- What is the need for support in this community? Who is the Centre for?
- Where is the right place for the Meeting Centre?
- How do people come along? How do they know about it? What transport is available?
- What happens at the Centre? What do people do?
- Making the Meeting Centre a valued part of the community and connected – with people, community groups and organisations and places
- Bringing the community together to create the Meeting Centre by working together
- Collaborating with partners, services and others.
THE HEALTH AND SOCIAL CARE PARTNERSHIP & MEETING CENTRES
Christine Johnstone outlined progress made by the Health and Social Care Partnership since we last met. Christine explained that the development of the Musselburgh Cluster Meeting Centre is part of East Lothian Health and Social Care Partnership’s wider Community Transformation Work.
The Community Transformation Project takes a new approach to thinking about and delivering services. It involves collaboration and working together with people who use services and with communities; it is community led, recognising and supporting the important ways that communities help people to live well – places to go, people to see, things to do. The Community Transformation projects shifts the focus to ‘people not buildings’.
The Integration Joint Board has agreed that future services should be local, blended, innovative and take into account the stress and work placed on unpaid carers.
Meeting Centres are a new way of people working together. People with dementia, unpaid carers, the community and Health and Social Care work together to create resources in the community where people with dementia and carers can get together for mutual support, get support from the Centres and access services. Research shows they help people with dementia and carers manage life with dementia better and communities are keen to develop them locally.
The Board has agreed to develop Meeting Centres across East Lothian using a flexible approach that can be adapted to meet the diversity of our communities.
As part of that, the Meeting Centre model has been approved for funding, initially in the Musselburgh Area. This is being done via a grant process. We have issued an invitation for applications for funding of £180k over 2 years to establish a Meeting Centre, within an existing community facility; aiming to start April 2022. Dementia Friendly East Lothian has been funded to support the development of the Meeting Centre in Musselburgh and work with communities across the county.
The Musselburgh Meeting Centre is being developed as a collaboration between the project team, which includes Janice and the Musselburgh Community, people living with dementia and unpaid carers and other partners.
FINDING THE RIGHT PLACE FOR THE MUSSELBURGH MEETING CENTRE
Janice has been looking at possible places where we could run a Meeting Centre in Musselburgh. She is using a checklist that looks for the essential characteristics:
- Ideally 2 rooms with space for activities
- A kitchen so people can prepare food and eat together
- Local, near amenities, familiar and connected
- Parking nearby
- A social community space, not medical or a care setting
- People already working there would be warm and welcoming to people living with dementia and carers and willing to do training
- Location owners/managers would be willing to make adaptations and changes so it is dementia friendly
Janice showed slides of different locations and suggestions for how the space could be used. Alison Connell had suggested re-designs. She is an interior designer who has done training in Dementia Friendly Design and has helped people make their homes and premises more dementia friendly.
We discussed different options. Janice found a strong sense of community and willingness for people to make their venues dementia friendly and do training. Her conversations also highlighted opportunities for local partnerships:
- Musselburgh Rugby Club was very welcoming and supportive. A Sporting Memories groups meets at the club and they have a gym that Meeting Centres members might be able to use.
- The Fisherrow Trust was also very keen to get be involved and support our work. They have garden space, a variety of spaces and there are opportunities for intergenerational work. The Trust is also very supportive of The Hollies.
Janice spoke about how her location visits had brought home the importance of not just looking at buildings, that people and communities make a huge difference. Janice said:
“For me this is an opportunity to move towards a Dementia Friendly Musselburgh. At the moment I’m pursuing an application to fund a Dementia Friendly Worker for Musselburgh”.
TAKING THE CONVERSATION FURTHER
We worked in small groups to look at 3 key questions for the Musselburgh Meeting Centre. Everyone discussed each question:
- Who will come to the Meeting Centre?
- How do we work together?
- What’s already available in the community?
1. Who will come to the Meeting Centre?
We talked about who might benefit from coming to the Meeting Centre and how it can support people with dementia, carers, families and friends
The Meeting Centre can connect people who are isolated:
- The Centre can connect people in the same boat and help them stay included in the wider community
- People who don’t have a diagnosis can get support, information and a point of contact
- The Centre can help tackle social isolation. Dementia can undermine social relationships, especially if people are already disconnected. Social isolation also makes life with dementia much harder for carers and people with dementia
- Covid has overwhelmed many people, it has had a big impact and they need more support and connection.
- The Centre can provide a range of social connections and support.
- A Meeting Centre can help people get information at critical points and at times that fit them.
- A Centre can help people connect to the wider community – libraries, services, groups, activities and social networks.
- The Meeting Centre can link to the Hollies lunch club and facilities, including their bus.
The Meeting Centre can be a warm and welcoming space in the community for people with dementia and carers to be with people in the same boat
The Centre can be a warm, community space where people feel welcomed and is separate to clinical and medical settings.
- The Centre can provide opportunities for social interaction in a relaxed atmosphere designed to support people with dementia and carers.
- Carers and people with dementia can go separately and/or together.
- The Centre can help people get information and support when they need it, informally in the community.
- The Centre can bring things together under the same roof.
The Centre can support people to plan ahead and help prevent crises and problems
- The Centre can provide support early, prevent problems arising and help people prepare for life with dementia.
- It can help people avoid ‘cliffs’. Often people have to be in crisis before they get the help they need.
- The Centre can help other types of connection and help people better manage daily life. For example, digital inclusion, online courses.
- People need different information at different stages and information flow can be hard for professional staff to manage. The Centre can help people get information and support when they need it, given in ways that help them use it.
The Meeting Centre can be part of a local diagnostic pathway
- The Meeting Centre can be part of the local post diagnostic pathway – linked to the Dementia Link Workers and the 5 and 8 pillars.
- The Memory Course can be run by the Meeting Centre, involving people with lived experience providing peer support and expertise.
- The Dementia ‘Information Pack’ would be more accessible and available as and when needed. People can get what they want, when they need it.
- There is no Day Centre in Musselburgh and so there is possibly a gap there as Meeting Centres don’t provide personal care.
- There may be other gaps in the what is needed – we need to look across the whole area.
- We need to clarify boundaries and where the Meeting Centre fits in on the pathway.
How can we work together?
The Meeting Centre can support a Dementia Friendly Community
- The Meeting Centre can be a hub for people across the community to find out about dementia and help build a Dementia Friendly Musselburgh.
- The Centre can raise awareness and provide training about dementia to the wider community. It can plan an important role in challenging stigma.
- It could run events and projects that bring people together – all ages.
We can share resources and work together
- We can work together to create opportunities so people with dementia and carers can access places and activities across the community. Eg Library, Hollies, Churches.
- It can work with others on dementia, healthy ageing and other issues.
- The Centre can involve volunteers – people who can share their skills and experience to enrich lives. Eg. music, dementia, community development, spirituality, other conditions.
- The Centre can provide training for different groups and volunteers.
- Churches could help raise awareness, draw in volunteers, help with admin and publicity, deliver worship/chaplaincy to the Meeting Centre.
- Services could pop in or use the Centre as a local base. For example, Carers of East Lothian is looking for a local base.
- Queen Margarets University could provide academic input, training, volunteers, campus grounds.
- The Community Mental Health Team could offer consultation or sessions in the Meeting Centre.
Where does the Meeting Centre fit with what’s already available in the community?
- It’s important that the Meeting Centre adds to Musselburgh and doesn’t duplicate what we already have.
- Knowing what’s available can also help us identify gaps we need to fill.
- If we know what’s available in the community, the Centre can give people information that helps them find activities and groups that suit them.
- Information needs to be up to date and accessible.
- We added more to what has already been ‘mapped so far’.
- Finding out what’s already available is a role for the Dementia Friendly Worker and members of the Health and Wellbeing Group.
WHERE WE GOT TO
We shared the conversations across the groups.
Who will come to the Centre?
The groups saw the Meeting Centre as playing an important role in helping people with dementia and carers manage life with dementia from before diagnosis and beyond. The Meeting Centre will:
- Be a warm and welcoming place in the community where people are valued and understood.
- Combat social isolation and promoting inclusion.
- Create opportunities for people to make connections – with folk in the same boat and the wider community.
- Help people connect with services and help services connect with people.
- Be part of a local ‘post diagnostic pathway’.
- Prevent problems – where people can get information and advice, and support to prepare and plan ahead for life with dementia.
- Be the heart of a Dementia Friendly Community.
How we can work together
We saw real benefits and opportunities of working together to create something special.
- The Meeting Centre can support a Dementia Friendly Community, providing training and support.
- We can work together to share resources and help people connect to the wider community – places, experience, networks etc.
- We can work together to share common aims – for example inter-generational working, imporving general health, tackling inequalities.
- We can promote and support volunteer opportunities and training.
- The Centre can be a supportive warm and welcoming local hub or space for peer support and to connect with services and get timely information.
- The Centre could be a hub and focus for the great community energy and commitment to help.
Where does the Meeting Centre fit with what we already have?
There’s a lot going on locally and great ideas and suggestions for how we can make activities and places more accessible to people with dementia and carers. This is important information to help make connections for people with dementia and cares and the Centre.
- We need to look carefully at where the Meeting Centre fits, what is adds and avoid duplication.
- We need good quality information to plan and give people quality information.
- Finding out what’s already available is a role for the Dementia Friendly Worker and members of the Health and Wellbeing Group.
WHAT HAPPENS NEXT…
Janice thanked everyone for coming along and for becoming partners in the development of the Musselburgh Meeting Centre.
- We will write up today’s notes and feedback from the ‘community engagement’ events done by Outside the Box. We’ll send the note to you and others who were unable to come along.
- The grant for the Musselburgh Meeting Centre should be awarded in early 2022.
- The Health and Well Being Group will meet in January.
- Dementia Friendly East Lothian will be running an online DFEL Gathering in early 2022 and online workshops are planned for inter-generational working, promoting physical activity and other topics. Training is also being developed.
- The conversations will continue – please take them forward in your groups and communities too!
Thank you to everyone who came along and made our conversations and considerations thoughtful, constructive and focused. The session has taken the Musselburgh Meeting Centre conversation forward and gives us a great base for the next stage.
Janice, Anne, Christine, Lisa & Sue