Dementia: Local views

A number of stakeholder engagement activities have taken place across the borough on behalf of the PCT and Local Authority, speaking to service providers and service users alike. Following the Dementia stakeholder event in September 2009 chaired by NHS Lewisham the issues raised in relation to the current provision were identified as:

  • Assessment delays
  • Communication with carers and preparing them for the future.
  • Coordination of services
  • End of life services inconsistency
  • GP involvement/engagement
  • Inflexible unresponsive services
  • Information for carers/service users following diagnosis
  • Insufficient numbers of day centre places
  • Incompatible IT systems
  • Multiple assessment and access points/Duplication of systems
  • People accessing services too late
  • Professional disciplines working in silos.
  • Personalisation varies across services
  • Systems complicated for service users/cares to navigate.
  • Training – carers skills for coping
  • Training – whole system for staff on working with people with Dementia
  • Accessing community services (housing, leisure, libraries, etc)

On 9th July 2010 South London and Maudsley NHS Foundation Trust (SLaM) held a Dementia event where 120 people including 50 service users and carers attended. The top themes were identified as:

  • Crystal clear communication
  • Joined up and connected services
  • Comprehensive services, community activities and peer-led resources
  • Trusting relationships with people who listen, understand and respond; continuity of compassionate, creative and flexible care
  • True partnership of staff, service users and carers - experts by experience and by training - in care planning, service development and service delivery
  • Choice enabled and supported at every stage
  • Responding to diversity everyday
  • Rich lives: opportunities for activity, fun, company, spirituality and hope for both service users and carers
  • Independence at home, enabled and supported
  • Respect and safety in the community

Stakeholders identified common success factors and other shared themes, which overlapped and cut across different situations from early diagnosis to hospital care. These themes feature in the vision of the best possible journey for older people and their carers, from the time a problem with memory or distress is identified until the end of life and have been captured in Figure 2.

Figure 2: Aspirational journey through a care pathway for patients and carers

A third stakeholder event held in November 2010 developed the themes of the National Dementia Strategy and has informed the development of local commissioning plans for implementation of the strategy.




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