"They were supportive to us and reassuring"

I cared for my mother who was very ill and needed help with personal care for 1 month before her death. She was put on a syringe driver I week prior to her death. This made it difficult to manage without services as she became sedated and was in bed - we had several days and nights caring for her and we were becoming very tired. Support with personal care at this point was required.

What we thought went well: 

The palliative care nurses were excellent; efficient, caring, friendly and the care they gave my mother was so appreciated and came as a relief to us. They were supportive to us and reassuring.

What could have been improved:

We wanted to care for my mother in a home setting without it being clinical and medicalised - as we had previously declined a profile bed, it was made clear to us that a referral to palliative care nurses didn't ensure we could get help as they were not keen to do this without a profile bed for health and safety reasons. That was disappointing.

We were assessed by Dr, Macmillan nurse and palliative care manager for care with this in mind and told it was up to the palliative care nurses if they would provide her service. The rationale for layers of assessment were unnecessary if it depended on the willingness of the individual nurses to deliver care or not. Fortunately our nurses were willing and very caring.

Our thanks to them.