In September 2023, we held our first DFEL Gathering since covid. We returned to the Maitlandfield House Hotel, the place of so many get togethers since 2016.
It was a day to celebrate being back together with friends old and new. A time to catch up on news and celebrate what we have all achieved since we started in 2013 – despite the pandemic. Not everyone who got us here is still with us or could come along, but they are with us in spirit.
Over 80 people came along, most of whom had dementia or were an unpaid carer. We were joined by Members from the Musselburgh Meeting Centre, Friendship Groups, Alzheimer Scotland Dementia Cafes and a range of community and voluntary bodies.
We were delighted that Shamin Akhtar, Chair of the East Lothian Integration Joint Board, was able to join us for the day. Shamin thanked everyone for coming and said how pleased she was to see the Musselburgh Meeting Centre up and running. Shamin also told us about the new East Lothian Dementia Strategy and thanked us in advance for giving our views on what their priorities should be. Shamin told us they valued and appreciated the experience and time people have shared so generously.
The agenda for the day was set by people living with dementia and carers and facilitated by a team from DFEL, East Lothian Health and Social Care Partnership and Alzheimer Scotland. This was also special, demonstrating the positive working relationships that have built up round the new dementia strategy and our shared commitment.
Over the day we looked at 2 major developments in dementia in East Lothian – the opening of East Lothian’s first Meeting Centre and the new East Lothian Dementia Strategy.
The Musselburgh Meeting Centre
The Musselburgh Meeting Centre opened in April 2023 and is almost 6 months old. The Members, families and friends and Fiona and her team wanted to share with people what the Meeting Centre is like. Members from the Meeting Centre worked with Daniel from The Storytelling Village to create a fictional new member – Tam. Tam and his story are based on their experiences and how coming to the Meeting Centre has changed their lives.
Meet Tam
Tam lives in Musselburgh with his cat called Hamish. He has recently been diagnosed with dementia, but still lives independently and gets out most days for a walk. Tam loves being around the sea and the harbour and often stops at the Ship Inn for a pint and a chat with some of his mates. He really enjoys a nice pint of Guinness.
Tam’s daughter, Sarah also lives in Musselburgh and pops in when she can. Tam loves to see her and they both enjoy sharing family memories – childhood, the old days when he worked in the Power Station at Cockenzie and his much loved and missed wife Mary. They have happy memories about the Box Meeting at Cockenzie Harbour and the walks they did together along the coast. As Sarah works full time, she can’t be there as much as she’d like, so Tam often spends a few days not seeing anyone if he doesn’t go the pub. Hamish is good company not a great for a chat. Tam really misses his wife hugely and finds himself getting a little bit low sometimes when he thinks about her – so he goes for a walk instead, but there is only so far he can walk these days.
Sarah has a friend whose mother Rachael goes to the Musselburgh Meeting Centre. When Sarah heard about the Centre she told Tam all about it – the chat, the friends Rachael made there and the things they do. They had trips out, to the museum in Edinburgh and a music workshop. Rachael had really enjoyed it and the trip brought back memories of going there as a child. She had taken her own children there too when they were young. Tam liked the sound of the company and the trips out. Sarah suggested they find out more and Tam agreed.
Tam and Sarah met Fiona who manages the Musselburgh Meeting Centre and they agreed Tam would come along for a few visits and see if it was for him. Tam felt at home with the people and the place right away. Everyone enjoyed Tam’s stories about East Lothian and Hamish the cat and he heard new stories too. Tam got out walking and began to use his experience to plan some short walks around Musselburgh for the Meeting Centre in the summer. In the evenings Tam has new stories and tales to tell his daughter and his friends at Ship Inn.
Meeting Centre Soup
Members said creating a great Meeting Centre is like making a great soup. It takes the best quality ingredients – people in the same boat, interesting things to do and places to go and support when I need it. Mix with friendship and laughter, season with trust and serve with a heart full of love.
By the end of the morning it was time for lunch. All that talk of soup got us ready for a lovely lunch from the Maitlandfield House Hotel.
Setting Prioritoes for the East Lothian Dementia Strategy
After lunch we turned our attention to the East Lothian Dementia Strategy and what we think the priorities should be. Ashley Hardy from East Lothian Health and Social Care Partnership told us about the new strategy, how it had been developed and what they hoped it would achieved. Ashley wanted to hear what we thought and she would use our views to help the East Lothian Joint Integration Board make decisions.
Our main points were:
Improving diagnosis – we wanted a better approach to how diagnosis is given, more understanding of dementia, bettter follow up support and more information on medication and dementia itself. People also wanted quicker access to diagnosis and felt carers should be supported at diagnosis as well as people with dementia. It’s likely this also links to access to post diagnostic support.
Information – People with lived experience want more information about dementia, benefits and attendance allowance, plus legal isues like power of attorney. Information shouldn’t be given all at once, but rather staged, what we need when we need it. People asked for a step by step guide, ideas about what to ask about and how dementia can affect the family.
Activities, Groups and Peer Support – People at the Gathering told us that getting together helps. It combats loneliness and isolation and gives us a social life. There were lots of suggestions for activities including country dancing, golf and swimming. People enjoyed being connected and wantd more day centres and clubs. These provide respite and link us to people in the same position.
Loss of ability – People told us it can be hard to accept we can’t do the things we used to take for granted. They would love to be “back to normal”, to regain confidence. Some people were frustrated at not being able to express themselves or get out for a walk.
Stigma – We need to work to challenge the stigma round dementia, to help people come forward for diagnosis without fear. We need more awareness on dementia in the community and remove the barriers that reduce contact and communication.
Respite – Carers need a break, there is a limit to what they can do. Respite wasn’t always available, people were unsure of the criteria and there was a lack of information on respite and options. Respite is expensive, difficult to sort and only available in an emergency. There was a call for specialist respite.
Support for carers – Carers need more general help, for example help to understand dementia and opportunities for getting together with other carers.
Training – It is important that staff are trained. All social care staff need empathy, understanding of dementia and how it can affect people.Workers need to see the whole person.
Medical reviews – There was a call for an annual medical assessment and frequent medication reviews.
Other areas -included long waits for post diagnostic support and social work assessments, the need for technical support, more information on housing optipns and transparency round the costs of social care. People also felt we should focus more on prevention.
Yoga Moments
The day ended with a ‘Yoga Moments’ session, led by Melanie Cook who works with us on our Yoga Moments Project. A chance to breathe.
What happened next
Gatherings are one of the most important ways we bring people together to share ideas, learn and make plans together. Talking and working together builds understanding and relationships.
Ashley took our views back to the Intergation Joint Board who make decisions about policy and funding. The Board was very interested in hearing about what really makes a difference and what works. They used our evidence to decide on prioritoes.
What people told us
It was a long day but a good day. We met old friens, made new ones, shared ideas and told decision makers what works for us. Some quotes:
- Just quick note to thank you so much for The Gathering in Haddington. [X] and I were very impressed
We both had a lovely time (and the food was delicious 😋)
You and your helpers are such lovely people.
We told the family and friends how lucky we are to have this facility in East Lothian.
Keep up the good work,we need you 🤣 - We thoroughly enjoyed the day but wonder if a more robust PA system could be put in place for next time …it was difficult to hear all that was going on.
Thank you
Many thanks to everyone who joined us on the day. We also remember the people who worked to get us here, but are no longer with us or were unable to attend. They are in our thoughts and gratitude.
Thanks to funders About Dementia for the day and the Scottish Communities for Health and Well Being ‘Pockets and project which paid for Village Storytelling to work with the Meeting Centre Members to tell their story.
Thank you to East Lothian Health and Social Care Partnership for the funding and support and Michael from Alzheimer Scotland.
We hope to see you soon!
Take care
Sue
