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Palliative Care - Data

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What you told us


What the data tells us

Palliative care is the care, treatment and support someone receives when they have a life limiting illness. It aims to improve the quality of life of patients and their families, through the prevention and relief of suffering. It involves the early identification and careful assessment and treatment of pain and other problems, physical, psychosocial or spiritual. Palliative care can involve hospitals, hospices, GP practices and community teams. When people are in receipt of palliative care in the community it is normally co-ordinated by the District Nurses.

In February 2019 there were 504 people registered with their GP as being in receipt of palliative care. 51 people were in receipt of specialist palliative nursing care from the Marie Curie. Patients and carers express their preference to be cared for in the place where they live, for as long as possible. Where possible, many would also prefer to die in their place of residence. There is no national and systematic data recorded on a person’s preferred place of care at end of life and so the percentage of last six months spent at home or in a community setting is measured.

The increase from 2013 to 2018 roughly equals an extra five days on average spent at home or in a community setting. The difference between Midlothian and the Scottish average was around 1 day in 2017/18.
100% of family members of people who were receiving palliative care, in a care setting, felt that their family member’s pain was eased to the greatest extent possible. 100% also agreed that their family member was treated with dignity. 90% felt they were informed by staff when they thought death was near and of those 90%, all felt welcomed by staff to stay with their family member. Some people felt they were not involved by staff in the planning of care (20%) and some people felt that chaplaincy services were not at hand for their family (20% strongly disagreed and 20% neutral) or that they were not asked about the rites and rituals of their family (20% strongly disagreed and 10% neutral). Overall, 100% agreed that they were satisfied with the end of life care that was given to their family member. It is important to note that in line with the small numbers of people in receipt of palliative care this questionnaire involved small numbers.

Analysis of Scottish level data suggests the percentage of the last six months of life spent at home or in a community setting for those living in the most deprived areas is the same as those living in the least deprived areas.
The percentage of those in the youngest age group that spent their last 6 months at home or in the community was slightly higher than the percentage in the oldest age group; 92% in the 0-54 age group compared to 87% for those aged 85+. This may reflect the different causes of death in these age groups.