Consider the needs of carers when commissioning end of life services

Nothing prepares you for caring for someone you love at the end of their life. Different agencies, keen to help, don’t always understand that we carers “don’t know what we don’t know”. This can lead to miscommunication and distress.

My late wife, Gillian, was cared for at home by the Marie Curie Nursing Service. Gillian was diagnosed with acute myeloid leukaemia and given eight weeks to live. In the end, Gillian had just 26 days.

‘Coordinating multiple services around the patient and their family can really improve the care experience’

When you’ve been with someone for 52 years, 26 days isn’t long enough. I was in a terrible state. I hadn’t slept for a number of days but fortunately the nurse was there for me, as well as my wife.

When Gillian died, the nurse made sure that I was aware of everything I needed to do with the doctors and undertakers, and looked after me until my family arrived. It was just incredible.

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Now, as a volunteer at Marie Curie, I help the charity to promote patient centred care throughout a terminal illness, right up until the very end of life.

We have known for some time that most people with a terminal illness would prefer to be cared for in a familiar environment with their family and friends close by. But too often community services are inadequate and carers, who are unable to cope, have no option but to phone an ambulance.

Listen to people

Considering carers’ needs when commissioning services benefits everyone. A starting point is to listen to the people using the services. Other agencies, including the voluntary sector, can offer expertise on forging stronger links with carers.

Looking at how carers can receive round the clock support can help lessen the anxiety we feel in the small hours.

‘A starting point is to listen to the people using the services’

Coordinating multiple services around the patient and their family can really improve our experience of care and make those services appear coherent and joined up. Increased use of shared electronic records would mean we have to tell our story just once.

Recognising that individuals’ spiritual, cultural, psychological and social needs can have a substantial impact on their experience and asking us to share our thoughts pre- and post-bereavement can feed real improvements back into services.

An added bonus is that the Nuffield Trust has found that coordinated quality end of life services are often the more cost effective for the health and social care economy alike.

Brian Andrews is a member of Marie Curie’s Expert Voices Group. It brings together people who were carers, family members or friends of someone at end of life