A message from Sue Northrop – Dementia Friendly East Lothian.
“Dear all, many thanks for coming to the DFEL Gathering. It was a lively and very productive event focused round 3 priorities for carers and people with dementia in East Lothian – Carers, Transport & Information. You can read a full report of the event here: https://dfel.org.uk/blog/dementia-friendly-east-lothian-winter-gathering-2019/
KEY MESSAGES
• We should value mutual support as a way to help people adapt to and cope with dementia
• People with dementia and carers need to be supported separately and as a unit
• Transport must be seen as a critical service so people affected by dementia can live well with dementia and manage daily life
• We need to radically improve information provision – content, quality, timing, access and links to Post Diagnostic Support
• People with dementia and carers often have different views and this needs to be reflected in how we work
• Carers and people with dementia often have different needs for support, information and services.
• Services should be delivered round our needs and aspirations – what we need when we need it
• And critically – carers and people with dementia must be seen and used as a resource of information and delivery, we are not just people who need things, we can contribute.
WHAT NEXT
Carers – Anne Bisset and the Carers Group will take the discussion to the East Lothian Health and Social Care Carers Carers Reference Group.
Post Diagnostic Support /Information – Sue Northrop (DFEL) will take our views to Nichola Cochrane and discuss options for carers and people with dementia to support the review of PDS and the Memory Rehab Course.
Transport – Sue will invite workshop participants, planning and Area Partnerships to develop an action plan to address Blue Badges, Buses and Parking. We will work with About Dementia Transport’s Sub Forum on this.
Increasing our Impact and Influence
Sue will write to:
• Iain Gray, MSP with our key messages and ask for a meeting with carers and people with dementia to talk about our concerns and how he can help us achieve our aims.
• East Lothian Council, Health & Social Care, Community Councils and elected Members
• Area Partnerships, asking them to host a local event on dementia to strengthen local links and involve more people
Getting Together Again:
The Life Changes Trust is facilitating a 3 day event: Community and Dementia – creating better lives in Edinburgh and the Lothians. The events focus on Integrated Joint Boards and will bring together people with dementia, carers, statutory and third sector bodies. We are currently talking with them about how we can ensure that carers and people with dementia are fully involved. Watch this space…
Meeting Centres – Musselburgh, Dunbar and Tranent Health & Well Being Groups (part of the Area Partnership) are visiting Kirrie Connections, Scotland’s first Meeting Centre to find out more about Meeting Centres and how they might work in their communities. The next stage is to hold community events to engage the wider community in setting up Centres.
DFEL Gathering Spring 2020 – The next Gathering will be organised to fit with the many other activities going on so we make best use of our time and energy.
Thank you again for all your support and hard work. Together we are changing the world – Living not Existing.”
