Across Cheshire, as with many parts of the country, there is a diverse range of services and support for people with dementia, with little consistency in the approach to end of life care.
A population-based needs assessment undertaken in Cheshire in 2013/14 (funded by Dementia UK) highlighted the need for new approaches to support local people affected by dementia at the end of their lives.
Due to the scale of local need – Cheshire has an older demographic and therefore a higher prevalence of dementia – the hospices and local commissioners felt that a practice development approach would be more cost-effective than a clinical service delivery model.
And so a working group set to work designing and implementing a new dementia end of life practice development team, based on this research.
The new team is led by Sian Harrison, a social worker, who leads on service development and team coordination. Other members of the team include:
- an education lead, who responds to educational needs and develops training packages
- an allied health professional, who provides support on swallowing problems and communication issues
- an admiral nurse (a specialist mental health nurse) who educates carers and professionals in end of life dementia care
- a business support officer, who provides administrative support and acts as the main point of contact for the team.
The team focuses primarily on supporting services which already provide care and support for people with advanced dementia, including care homes and primary care providers.
Training, service development and building links
So far, the team has developed a range of training days which are accessible to all health and social care staff. Training ranges from a one-day dementia end of life awareness course to a five-day BSc and MSc module.
In addition to this, they have provided bespoke training sessions for practice nurses, district nurses, dementia link nurses, dementia reablement carers, GPs and CQC inspectors. These are responsive to the learning needs of different services and use a facilitative approach to learning, based on real case studies.
The team is also developing an educational programme for families/carers and is linking with local carers’ groups to provide training and support. They are also encouraging the development of carers’ support groups in care homes.
Service development is also a key element of their work. The team has supported the delivery of the Amber Care Bundle on a ward in the local hospital and the use of an anticipatory care plan to prevent unnecessary hospital admissions in pilot sites around the area.
The team has also contributed to dementia care pathway groups at local hospitals and is part of the local dementia action alliance.
The links the team has made across three local clinical commissioning groups (CCGs) is helping to promote good practice and share learning across different organisations. Links with the two local hospices is also helping the hospices to become ‘dementia friendly’.
Funding the new team
During 2014, East Cheshire Hospice and St Luke’s Cheshire Hospice formed a new alliance called ‘Hospices Together’ to act as a catalyst for innovation in transforming end of life experience.
Through Hospices Together the hospices are funding the new dementia end of life practice development team for the first two years.
Three CCGs – Eastern Cheshire, Vale Royal and South Cheshire – have agreed to pick up the costs of the new team after this. Strong engagement with commissioners has been critical to ensuring funding for the new team is embedded in commissioning priorities.
Additionally, Dementia UK is funding an admiral nurse post for 12 months and hospices worked with local mental health trust on a secondment opportunity to fill this position.
The development of the new team has not been without challenges.
The skill set required of individual team roles are complex and there was a limited numbers of suitable applicants. This led to a required broadening of the person specification for the allied health professional role (initially this was a speech and language therapist role) and working with local mental health trust to secure a secondment for the admiral nurse position.
The hospices are funding a service evaluation that is being undertaken by the End of Life Partnership, in conjunction with University of Liverpool. As limited validated tools are available to secure evidence of outcome and impact of a practice development model of intervention, the evaluators need to work closely with team members to find creative approaches to evidence impact.