For people living with dementia and those who care for them, navigating health and social care services can be overwhelming. Yet across Haringey, a unique partnership is ensuring that those with first-hand experience are not only listened to, but are helping shape the future of local services.
Over the past year, the Joint Partnership Board (JPB) and its Dementia Reference Group (DRG) have demonstrated the power of genuine community co-production. By bringing together residents, carers, NHS professionals, council officers and voluntary organisations, they have influenced service improvements, highlighted gaps in care and ensured that lived experience is driving change.
The result is stronger relationships between communities and decision-makers, better informed services and residents who know their voices matter.
A partnership built on lived experience
Established in 2017, the Joint Partnership Board was created to ensure that vulnerable residents have a meaningful voice in the design and delivery of health and adult social care services in Haringey.
Supported by Public Voice on behalf of Haringey Council, the Board brings together representatives from six resident-led Reference Groups covering Autism, Carers, Dementia, Older People, Physical Disabilities and Severe and Complex Learning Disabilities (SCALD).
Each group provides a direct route for residents and carers to influence policy, challenge existing practice and work collaboratively with commissioners and service providers. The Dementia Reference Group has become one of the strongest examples of this approach.
Meeting every quarter, the group brings together people living with dementia, carers, Memory Service clinicians, Admiral Nurses, Dementia Lead Nurses, Community Mental Health Teams, Haringey Council officers, the Integrated Care Board, voluntary and community organisations and local partners including the Haynes Dementia Hub, Haringey Reach & Connect, Carers First and the Spurs Foundation.
Turning lived experience into better support
Many of the improvements now available to people affected by dementia in Haringey can be traced back to concerns first raised within the Dementia Reference Group.
Early discussions highlighted the lack of support following diagnosis, with carers describing how families often felt isolated once they left clinical services.
Those conversations helped shape clearer information for newly diagnosed residents and contributed to the development of the Living Well Group, delivered through the Memory Service and Haringey Reach & Connect, providing ongoing support beyond diagnosis.
The group has also helped influence:
- stronger post-diagnosis pathways
- improved access to community support and Cognitive Stimulation Therapy
- expanded Memory Service support from diagnosis through to end-of-life care
- faster assessments for day services
- improvements to annual GP dementia reviews
- feedback into the North Central London Dementia Review to improve consistency across boroughs.
Rather than consultation ending once feedback was gathered, members have continued working alongside professionals to monitor progress and identify where further improvements are needed.
Supporting carers as well as patients
Throughout the past year, carers have continued to highlight the challenges they face alongside caring responsibilities.
Issues raised through the group have led to practical improvements including:
- the development of carers’ coffee mornings and peer support opportunities
- greater recognition of safeguarding risks faced by carers
- improvements to information and guidance following diagnosis
- raising housing and tenancy issues affecting people living with dementia
- ongoing work to improve support for people with Mild Cognitive Impairment and young-onset dementia.
One particularly significant piece of work began when a carer shared her deeply personal experience of domestic violence resulting from behavioural changes associated with her partner’s dementia.
Rather than allowing the issue to remain an individual experience, the Dementia Reference Group brought together safeguarding leads from Haringey Council, the Metropolitan Police, London Fire Brigade, Women’s Aid and dementia specialists.
The outcome was a revised safeguarding leaflet specifically designed for carers of people living with dementia, providing clearer advice, practical guidance and information on initiatives such as the Herbert Protocol.
This is co-production at its best: residents identifying an issue, professionals listening, and services changing as a result.
Influencing hospital care through courageous storytelling
Perhaps the most powerful example of co-production over the past year has been the group’s work to improve local hospital care.
Following a traumatic experience when her husband Steve, who lives with a rare form of dementia, was admitted to hospital, Dementia Reference Group member Sarah Vallelly documented every stage of their journey.
Her report described prolonged stays in A&E, repeated transfers between hospitals, fragmented physical and mental health services and the emotional impact these experiences had on both Steve and their family.
Rather than treating the report simply as feedback, the Dementia Reference Group used it as a catalyst for change. Working with Dementia Lead Nurses from both North Middlesex and Whittington Hospitals, Sarah’s recommendations have become the basis for ongoing discussions around improving dementia care across hospital settings.
Key recommendations include:
- creating alternatives to lengthy A&E stays wherever possible
- improving dementia awareness training for all hospital staff, including security and ancillary teams
- strengthening communication with carers through named contacts and Dementia Leads
- making hospital environments more dementia friendly
- improving support for patients’ basic needs such as hydration, nutrition and personal care
- developing more person-centred approaches to treatment and discharge planning.
Sarah’s experience has helped ensure that future service improvements are grounded in real-life experiences rather than assumptions.
It has also given other carers confidence that difficult experiences can be transformed into meaningful change.
Residents shaping future priorities
As dementia services evolve, so too do the priorities identified by residents.
The Dementia Reference Group is now working with partners to improve support for carers whose loved ones are in hospital or care homes, increase access to Admiral Nurses, improve home adaptations and housing support, develop a borough-wide Dementia Charter, strengthen support for people with Mild Cognitive Impairment and young-onset dementia, and explore the introduction of a dedicated dementia support line within Adult Social Care.
