Palliative Care

Baroness Walmsley Excerpts

Thursday 22nd October 2015 Grand Committee

[Baroness Walmsley (LD)]

My Lords, in preparing for this debate, I talked to a friend who had recently been affected by the shortcomings in end-of-life care. Her mother did not have an identified terminal illness, but deteriorated slowly from multiple conditions. She had several stays in hospital and had agency carers at home. She had several assessments from social workers and occupational therapists, but no longer-term planning was done for her inevitable future decline. Care was reactive to the immediate situation only.

In her final few weeks she deteriorated rapidly and her carers struggled without additional equipment, but it took several days to get further assessments. By the time the occupational therapist arrived to assess the suitability of her room for a bed with a hoist, which would have allowed the carers to handle her, the family were at crisis point. My friend, at her wits’ end, tried to get the bed, but it was a Friday morning and she was told that no equipment could be delivered before Monday. By the evening, her mother became unconscious in her chair. The out-of-hours service suggested an ambulance to take her to A&E. The family declined. They were then on their own. My friend’s mother died during the night, but had she survived into the weekend it would have been almost impossible to care for her properly at home.

My friend’s reflections from this episode are as follows. In contrast to the planning following a terminal cancer diagnosis, from which we need to learn, there is a lack of co-ordination and forward planning for the care of elderly people with multiple conditions. Home assessments are time consuming. Using modern technology such as iPads and Skype and a simple assessment sheet, any sensible person could have assessed the room and had direct contact with professionals for instant advice, rather than waiting for a home visit. Essential equipment should be available in much fewer than four days. You can now order almost anything from Amazon online and have delivery the same day.

There needs to be greater support for those caring for the dying person, especially in the evening, the night or at weekends. No professional or other care support was offered to my friend in the final few hours of her mother’s life, so it is not surprising that many people do not feel competent to care at home, even though they do not want their loved ones to die in hospital. If someone cannot be cared for at home, transfer should be directly into a hospice, rather than admission through A&E to a bed on a busy acute ward.

In the July 2014 report Choice in End of Life Care it was recommended that each person approaching the end of life should have a fully interoperable electronic health record to help to ensure their preferences are recorded and shared with everyone involved in their care, and that people should be able to access and add to their own records. Will the Minister say what progress is being made towards having this in place by 2020?