The need to support carers who are caring for someone in their last year of life

Categories: Care.

It is estimated that in the UK there are over 6.5 million people acting as unpaid carers for friends or family members, of which approximately 500,000 are in an end of life phase1.

This conservative figure, due to a hidden network of care provided by people not known to health and social care services, is estimated to rise and, importantly, will comprise an ageing population many of whom have their own health issues.

There is also the emergence of the ‘sandwich’ generation of carers faced with numerous challenges from having dependent children and/or grandchildren along with older parents needing care.

Professor Barbara Jack and Dr Mary O’Brien from the Evidence-based Practice Research Centre (EPRC) at Edge Hill University initially carried out a small-scale, local study with Sefton PCT exploring healthcare professionals’ views on why an increasing number of cancer patients, who had elected to die at home, were being admitted to hospital in the last days of life. They found that, in many cases, carer breakdown played a pivotal role in end of life hospital admission.

“The last year of a patient’s life can be extremely stressful for family carers and people are often reluctant to ask for help,” says Professor Jack.”Our research found that a lot of people whose care had been going well, and who did not have significant medical problems that would require hospitalisation, were suddenly being admitted.”

Although there are a plethora of carer assessment tools, ranging from lengthy research instruments to locally developed tools, there are very few brief tools for use with carers providing end of life care in the home.

Furthermore, when considering any type of tool development you have to be aware of who is going to undertake the assessment and any educational and resource implications there might be. These factors were uppermost in our thinking to ensure we developed a screening instrument that could be easily used in everyday practice.

Carers Alert Thermometer (CAT)

We identified a need for a quick, easy review to act as an alert to the needs of carers and requirement for a formal assessment to be undertaken by experienced professionals.

We were influenced by the concept of the modified early warning systems (MEWS) regularly used in healthcare to detect early signs that patients require a higher level of medical care.

To develop the CAT we undertook a mixed-method, multi-phased, consensus study with over 245 people (117 carers and 128 professionals) across a range of health and social care settings mostly from the North West of England (2011-2014).  The CAT is for use in daily practice in the home, by non-specialist staff, to identify carers who are at risk and  in need of a formal needs assessment.

The CAT is a short screening instrument that aims to provide an alert to potential areas of burden that carers are experiencing. It comprises 10 questions that fall into two domains within the current caring situation including exploring the needs of the carers in their caring role and the carer’s own health and well being.

Using a traffic light system to score the risk of the alerts, low (green), medium (amber), high (red) and an image of a thermometer to mark the number and type of alerts provides a quick visual representation of the extent of the carer’s needs.

It is recommended that alerts scored as high (red) are given a priority for action. There is a ‘next steps’ section which can be tailored to local services that the carer can be signposted to and an ‘action plan’ used to trigger intervention as appropriate.

Initial feedback received from family carers and health and social care professionals, suggests that the CAT is quick and easy to use. They commented that the CAT will be important in helping to identify carer needs and to provide signposting to appropriate support and interventions. The potential for the CAT to help reduce inappropriate hospital admissions was also highlighted.

The CAT was launched in September 2014 and is available free of charge for non-profit use. To access the CAT please register at the web site:


  1. NCPC, 2012. Who Cares? Support for carers of people approach the end of life. The National Council for Palliative Care. London

Professor Barbara Jack is Head of Research and Director of the Evidence-based Research Centre Edge Hill University Ormskirk Lancashire. She is also the chair of the Palliative Care Research Society and Visiting professor Hospice Africa.

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

This study is funded by the National Institute for Health Research Research for Patient Benefit (NIHR RfPB) Programme (Grant Reference Number PB-PG-0909-20188). The viewsexpressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Leave a Reply

Your email address will not be published. Required fields are marked *