What is being done?
Housing 21 appointed a specialist palliative care nurse for dementia patients at the end of 2008. The remit of the Dementia Voice Nurse (DVN) role is for a qualified nurse with expertise in dementia, end of-life care, symptom control and effective communication to act as an expert practitioner, advocate and facilitator. The multiple and complex needs of people with dementia nearing the end of their lives are identified and monitored through on-going assessment of patients’ health and wellbeing. The DVN liaises with external agencies and provide a consistent link with GPs, other primary healthcare practitioners, statutory and voluntary agencies. Crucially, the Nurse is to be able to fill an important gap -taking on the responsibility for the sourcing and effective coordination of existing services.

New role and function
The DVN service focuses on providing palliative services to people with dementia. The service is multi-setting, as well as being based in the community the service follows up patients in hospital, both psychiatric and physical wards. The DVN has both psychiatric and general nursing qualifications, as well as having additional knowledge and experience of social services, care providers and housing. Working from outside the NHS has proved very useful for the DVN in terms of being able to assess situations holistically from a different, ‘neutral’ perspective. For example, the DVN has been able to quickly identify practices and decisions in hospitals where improvements could be made for the service user and has been able to make a positive influence on these.

The referral system is simple, as anyone can refer to the service, this means that if overlooked by one team, they may still be referred by someone else in contact with them.

The key tasks of the role include palliative nursing, co-ordinating a support system to help families cope with illness and bereavement, and transferring skills to paid and family carers.

The evidence gathered from the evaluation of the service to date strongly indicate the service has is successful in it’s achieving its aims:

• improving quality of life, and quality of dying, for people with dementia
• improving the availability of support, services and equipment for people with dementia at the end of their lives and for their families
• improving support available to Housing 21 staff and staff from other care and health organisations
• improving staffs’ skills in supporting clients in end of life situations

What has been achieved?
Following an evaluation of the first year of the service, the following findings were made:

• service users have been able to remain in their homes for longer than they otherwise would have done, some through to the end of their lives
  • 75% of users died in preferred place of death where this was known
• their diagnoses, care, medication, services and support have improved/increased including many incidences of significantly better identification and management of pain there have been avoidances of admissions to hospital and nursing homes
  • An estimated 250 care home days have been saved from admissions being avoided
• families have been able to recognise their relatives are nearing the end of their lives and been given – often for the first time – advice and information regarding planning and decision making for the future
• professionals from social and health sectors in many different settings have been supported and highly appreciative
• some services, including those on hospital wards, have changed practices and procedures in the way they care for people with dementia following their joint working with the DVN
• care workers’ and team managers’ concerns about changes in health or wellbeing of a service user are now taken seriously by care managers and GPs as they are channelled, investigated and verified through the DVN
• there have been improvements in communications and better co-ordination of services.

Over a 19 month period it is estimated that the DVN service wholly or partly contributed to savings of £239,000 through the avoidance of hospital, nursing and residential home admission and the use of ambulance services