Hello! We held our Winter Gathering at the end of November.  Gatherings are an opportunity for people affected by dementia to have their voices heard, set priorities and work together to make life better for people affected by dementia.     Over 50 folks got together to look at how we make change happen: People affected by dementia, community members and volunteers and people from local and national organisations and groups. We are very grateful to everyone who came along and gave so freely of their time, experience and passion.

At the DFEL Spring Gathering 2019 we agreed 6 priorities including Carers, Meeting Centres, linking to Change Boards  and Post Diagnostic Support. You can read the report here: DFEL  Spring Gathering   At the Winter Gathering we worked on 3 priorities: Carers, Information/Post Diagnostic Support and Transport.   


Carers: by carers for carers


In Spring, we agreed to build on the success of the By Carers For Carers Event: Dementia: the Carers Experience – Better Enabled, Better Equipped. The event was led by local carers and funded by the Life Changes Trust.   Feedback from carers to this event was they wanted more opportunities for carer-only events and they particularly welcomed the opportunity on the day to talk with other carers in small groups about their concerns. It was this feedback that led Anne and Moira setting up a carers only support group.

 The group ran 2 workshops on the Carers Event and agreed we need action to:

  • Develop mutual support led by and focussed on the particular needs of carers supporting someone with dementia.
  • Address support after the one year Post Diagnostic Support
  • Look urgently at one point of information to access information. 
  • Provide better advice and support for planning ahead and respite
  • Find effective solutions to transport and mobility issues, in particular Blue Badges 

Since Spring, Anne Bisset, one of the carers who organised the event, joined the East Lothian Health and Social Care Partnership Carers Reference Group.

Information and Post Diagnostic Support  (PDS)


After the Spring Gathering, we met with the East Lothian Health and Social Care Partnership and discussed how we might support the review of Post Diagnostic Support. We also participated in research led by Agnes Houston, MBE, Dr Julie Watson, ECRED Edinburgh University  and Rachel Niblock from DEEP on what information people affected by dementia need and the potential for people affected by dementia running information courses. The research provided the focus for the Workshop. We agreed priorities are:

  • Easier access to information, including transport. 
  • Access to information to plan ahead.  
  • Information for carers and people with dementia separately and together.
  • Use and value the expertise of Carers and people with dementia.
  • Involve people affected by dementia in delivery and development.
  • Opportunities to speak openly about dementia, free from stigma.  
  • Address barriers eg different faces, baffling bureaucracy and gaps.

Transport: Finding practical solutions by working together


Transport is a long standing issue and we are still looking for practical solutions. Colleagues from East Lothian Council Transport Services, Alzheimers Scotland, Go Upstream, About Dementia and Sestrans joined us in looking at what might be done practically to make tangible improvements. Priorities are:

  • Practical advice and support round driving & dementia. 
  • Making it easier to get Blue Badges.
  • Parking in local towns and High Streets.
  • Embedding transport in all areas, including Post Diagnostic Support, Memory Rehabilitation, planning & policy, service decisions. 
  • To organise a workshop to develop an action plan for East Lothian that will make real improvements.

Creating together

We had 2 uplifting and inspiring creativity sessions. Mindful Creativity led by Emma Mackenzie  and singing led by Anne Traill and the Haddington Singing Group, including ‘Morning Mrs Magpie”, a song they wrote and performed about being a carer.

Other Updates : What’s happened since the Spring Gathering 


Meeting Centres  Musselburgh and Dunbar are visiting Kirrie Connections. Tranent is interested too.  We will hold a Meeting Centre event with the UK Support Programme and Kirrie Connections in Spring/Summer 2020.

RoundtablesAbout Dementia and bold (Life Changes Trust) held events in  East Lothian in November on housing and a taster on building leadership.

Change Boards – DFEL and Carers are on the Carers Reference Group. Primary Care are kept informed.  Work with the Health and Well Being Groups of the Area Partnerships is building links with re provisioning and Adult Mental Health. 

On the horizon – we still want to address Primary Care and Housing.

Increasing our Impact and Influence

We agreed we need to get our voices and views across more widely and learn more about how to make change happen. We will contact:

  • Iain Gray, MSP  and ask  for a meeting with carers and people with dementia about our concerns and how he can help us achieve our aims.
  • East Lothian Council, Health & Social Care,  Community Councils and elected Members to raise awareness and ask for their support 
  • Area Partnerships, asking them to host a local event on dementia to strengthen local links and involve more people

When will we all meet again?

The Life Changes Trust runs a major programme on dementia and is running a  3 day event: Community and Dementia – creating better lives in Edinburgh and the Lothians. The event will bring together people with dementia, carers, statutory and third sector bodies and NHS Lothian. We are currently talking with them about how we can ensure that carers and people with dementia are fully involved and how DFEL can help. Watch this space…

Thank you to everyone for making it a great day and for all the work in between.  Everyone of us makes a contribution to making East Lothian Dementia Friendly and we are changing the world together, conversation by conversation and smile by smile.

Take care

Sue   🙂


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