This year one of Social Care Alba’s key focus areas is in Palliative and End of Life Care. The group will be led by Lynn with named champions supporting her. Yesterday Lynn, Emily and I met with District Nurse Gillian Grant and Hub Manager Dawn Arundel to kick start the focus group.
The agreed outcomes of the meeting were:
- To improve the quality of life of service users and their families where Palliative or End of Life care is being provided.
- To support those who wish to receive palliative or end of life care to remain in their own home
- To reach an agreement on what is meant by Palliative and end of life care
Currently Edinburgh Council do not have a defined care pathway for palliative or end of life care. For those new to this area the terms may seem confusing. Marie Curie definitions are helpful:
Palliative care is for people living with a terminal illness where a cure is no longer possible. It’s also for people who have a complex illness and need their symptoms controlled. Although these people usually have an advanced, progressive condition, this isn’t always the case.
End of life care is an important part of palliative care for people who are nearing the end of life. End of life care is for people who are considered to be in the last year of life, but this time frame can be difficult to predict.
End of life care aims to help people live as well as possible and to die with dignity. It also refers to treatment during this time and can include additional support, such as help with legal matters. End of life care continues for as long as you need it.
By the end of the meeting we had agreed to:
- Define the terms Palliative and End of Life
- Define communication routes
- Understand the roles and responsibilities of different providers
- Research shared training standards for staff across both NHS and SCA
- Fast track solutions where issues are not resolved immediately
- Share diagnosis, not for resuscitation agreements
- Include SCA in planning meetings
Another meeting to review progress is planned for the beginning of September. If you feel you would like to participate in this group or feedback to the group your experience of palliative or end of life care then we would be very grateful to hear from you.
