Launched in November 2015, the 18 month project was made possible thanks to a £40,000 grant from Hospice UK’s St James’s Place Foundation grant programme.
The funding has allowed the hospice to release clinical nurse specialist Lisa Morris from her regular role in the hospice’s community team to drive forward improvements for this patient group.
Lisa has a pre-existing interest in dementia and has worked hard to develop her knowledge base through mentoring and training opportunities.
The project consists of several strands – in addition to managing a caseload of patients with complex needs, Lisa is involved in training and supporting other health and social care professionals and developing partnerships with other local organisations.
For example, Lisa has developed close links with Oxleas Advanced Dementia Service (OADS) – an award-winning service that seeks to help people with advanced dementia to live at home for as long as possible in the last year of life with support from family and/or carers.
Through this partnership, Lisa can identify patients on the OADS caseload who would benefit from palliative care and link them into the hospice’s services.
At the hospice, Lisa provides training, advice and support for staff. She also trains other local health and social care staff on caring for people with dementia at the end of life, hence improving quality of care for this patient group more broadly.
With her own caseload, Lisa has been able to prevent a number of unnecessary hospital admissions, and ensure that all bar one of her 24 patients who have died to date have died in their preferred place of death.
This has been achieved by making sure patients are registered on Electronic Palliative Care Co-ordination Systems (EPaCCS) and through putting in place a range of support.
In addition, more than half of carers have been referred to the hospice’s befriending service for additional support from a dedicated volunteer.
The service has been embraced by carers – 100% of carers who responded to the latest survey said that they would be ‘extremely likely’ to recommend the service.
“The team were a great help in understanding my mother’s illness and it reassured me that I wasn’t alone,” commented one carer. Another said: “Without this support I do not know how I would have coped.”
Lisa said: “It’s clear speaking to carers that there is a real need for specialist support for people with dementia at the end of life and I am so glad to be able to help. It is a privilege to be part of their lives.”
The project has also been received enthusiastically by staff, volunteers and service users.
Service users from the hospice’s knitting group and drop-in service Stepping Stones have been making fiddle cuffs and cushions for patients. (Fiddle cuffs are colourful, textured woollen muffs that are provided as a stimulation activity for patients with dementia who have restless hands).
The project is overseen by a steering group that meets on a quarterly basis and includes representation from the hospice, OADS, Alzheimer’s Society, local commissioners and the Health Innovation Network, all of whom bring a wealth of experience and profile to the project.
As demand for the dementia project is significant, the hospice is already exploring how to develop and continue the service beyond the project timeline.