Alert system to provide much-needed support to end-of-life carers

Lancashire university's Carers’ Alert Thermometer designed to assess the needs of people caring for terminally-ill loved ones

A new alert system developed by Edge Hill University in Ormskirk, Lancashire, has been designed to assess the needs of people caring for terminally-ill loved ones and features prominently in the recently-published National Institute for Health Research (NIHR) Better Endings report.

The Carers’ Alert Thermometer (CAT) is a simple screening tool, developed with more than 245 carers and professionals from around the North West, that aims to provide an alert to potential areas of burden that carers are experiencing and trigger interventions where appropriate.

The CAT is a response to a major research study that informed the Better Endings report, undertaken at Edge Hill University and funded by the NIHR. The study found that support received by unpaid family carers could be a significant factor in what happens to terminally-ill people, particularly those with cancer, at the end of their lives.

Professor Barbara Jack, director of Edge Hill’s Evidence-based Practice Research Centre, said the Better Endings report provides important insight into the issues facing those on the frontline of palliative care.

She added: “Prior to commencing the research project, it had become apparent that an increasing number of cancer patients, who had elected to die at home, were being admitted to hospital in their last days of life.

“While honouring people’s final wishes and helping them die with dignity is common to all carers’ motivations, it was identified that in many cases carer fatigue played a pivotal role in end-of-life hospitalisation.

“The CAT has been designed to help carers and professionals identify breakdown behaviours and risk areas before they escalate, helping many more terminally-ill people avoid hospitalisations during their finals days.

Better Endings is the first such report to bring together evidence on a single topic from across the NIHR. The review is being launched at an event taking place at the Kings Fund in London, which will be attended by NHS clinicians, commissioners, patients and researchers.

The themed review aims to help NHS decision-makers by presenting the findings of 17 NIHR studies in a clear and comprehensive way. It also highlights 12 pieces of ongoing NIHR-funded research that are evaluating new and existing care initiatives, such as ‘hospice at home’ and a new data sharing service to improve continuity of care.

The CAT research team included Dr Katherine Knighting, Dr Mary O ‘Brien, Professor Brenda Roe from Edge Hill University, Professor Mike Nolan (University of Sheffield), Professor Mari Lloyd-Williams (University of Liverpool), Dr Rob Gandy (independent consultant), and Kirsty Pine (Liverpool CCG).

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