Partnerships, Relationships, Co-production and Kindness
By Ceri Higgins, founding member of Lleisiau Dementia
To mark Dementia Action Week (19-25 May), we’re sharing a series of blogs written by members of our dementia team and NHS colleagues who lead work to improve dementia care in regions across Wales.
View our dementia pages to see how we’re working together to make Wales dementia friendly.
Dementia Action Week is about raising awareness of dementia and committing to action. This blog remembers Nigel Hullah and his commitment, passion and dedication to improvement, influencing legislation, upholding human rights and determination to see co-production embedded in all practice in Wales.
Nigel, who lived with dementia, was the co-founder of Lleisiau Dementia, an independent network of voices in Wales. He shared his passion through co-production of the Dementia Pathway of Standards and Wales Hospital Charter, and a vision for the next steps of the Wales Dementia Action Plan and the Dementia Oversight and Implementation Group and its governance.
The importance of connection, partnerships, relationships, co-production, and engaging with kindness and understanding is a powerful message we continue to promote and highlights the direction of the Dementia Pathway of Standards. Lleisiau Dementia supports this message working with and across many dementia networks, supporting universities, health boards, regional partnerships, dementia boards and local and regional services to embed co-production and enhance their services for people living with dementia and their families across Wales.
Knowledge of research, and supporting organisations to develop informed, knowledgeable and compassionate workforces across health, social care, nursing and other professional qualifications is key to our work. Lleisiau Dementia advocates for supporting other individuals living with dementia and their families to have their voices heard and their rights upheld, and taking Nigel’s lead, mentor and empower others to contribute to the work across their regions.
Our approach in Wales has been championed on an international stage by Nigel and others with lived experience, carrying their message and passion for the Dementia Pathway of Standards, Lleisiau Dementia and the dedication of the dementia workforce in Wales. Presenting at national and international conferences helps us spread these messages, proudly flying the Welsh flag with a determination that the voices of those with lived experience should be heard as equal partners in co-production.
Positive outcomes in dementia spaces (PODS), an innovation of Lleisiau Dementia co-facilitated with others with lived experience which provide a safe space for all involved in implementing the Dementia Pathway of Standards were a huge source of pride for Nigel and for us all, as was the delivery of PODs to health board CEOs across Wales.
Having reached thousands of people across the world, Nigel’s legacy will certainly live on for years to come. With the launch of the Wales Dementia Pathway of Standards in 2021 the message he gave was “we need to do better”. By taking forward the message and importance of partnerships, relationships, coproduction, kindness and understanding, and the involvement of people with lived experience, Lleisiau Dementia are starting to see that Wales is doing better!