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Supporting communication at end of life

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Macmillan Palliative Care Specialist Nurse Elaine Hemingway on a new way for patients to voice concerns and complaints

elaine hemingway one

elaine hemingway one

Source: Macmillan

Older people often rely on their relatives to make a complaint when things go wrong in hospital. Yet according to a survey published by the Parliamentary and Health Service Ombudsman last year, more than half of family members who are concerned say it is difficult to complain about the care or treatment of an older relative. Furthermore, two-thirds of those who complained said they did not believe complaining would make a difference.

your concerns are our concerns

your concerns are our concerns

Source: Macmillan

While the number of direct complaints to palliative care services throughout University Hospitals Morecambe Bay NHS Trust (UHMBT) is extremely low, members of the team were often asked to respond to complaints made to the local Patient Advice and Liaison Service (PALS) about end of life care. Most of the complaints and enquiries to PALS had similar themes around diagnosis, treatment or nursing care.

As a result, we set out to develop an additional means of communication to help staff resolve any issues at ward level, and improve the experience of end of life care for people with cancer and their families. The aim was to produce a booklet (pictured right), which contains a form, offering people an opportunity to communicate their concerns in writing. This would allow staff to try to improve their experience during the last few days of life. If problems cannot be resolved, the person can be referred to PALS.

Making it happen

UHMBT is a licensed member of Listening into Action, which was developed by Optimise Limited and adopted by over 70 NHS trusts since 2010. We joined up with the Listening into Action team to help ensure that we received the support we needed for our idea to be successful.

It was crucial to win the support of all staff caring for people nearing the end of life, ward managers, PALS team members and the palliative care team.

We started by distributing a survey to all ward managers to ask if they thought that patients and their relatives made complaints on the ward, and if so what mechanisms they used to manage these. The majority of respondents (80%) said that people did not complain. One ward manager said, ‘I purposely ask patients and their family at visiting time if everything is alright, checking to see if they have any concerns. It’s really upsetting when a complaint comes in weeks after someone has died.’

We then produced the booklet with user involvement (pictured top right), which was approved by the Board of the Trust.

PALS records all comments made through the booklets and provides the palliative care team with a monthly report, to highlight any common themes that can be addressed to improve patient and family experiences.

Initial responses have included as many compliments as complaints about care, and we will conduct an evaluation of the project once the booklets have been in use for longer.

elaine hemingway

elaine hemingway

Source: Macmillan

Further information: Elaine Hemingway, Macmillan Palliative Care Specialist, Royal Lancaster Infirmary

elaine.hemingway@mbht.nhs.uk

This article was featured in Mac Voice, our quarterly magazine for Macmillan health and social care professionals, showcasing their work and sharing good practice. Want to read more like this? Check the archives for more articles.

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