New report highlights lack of support for end of life carers

Actor Stephen Mangan is backing a new report from Marie Curie Cancer Care which highlights a lack of support for carers looking after loved ones at the end of their lives and the negative social and economic impacts this has.

Download 'Committed to carers: Supporting carers of people at the end of life' report
(PDF format, 483KB)

'Committed to Carers' draws on the direct experiences of carers looking after someone at the end of life and Marie Curie’s expertise of caring for patients and their carers at this time.

The report shows how carers can have drastically different experiences of support and information, which can create difficulties during what is a very stressful and exhausting time.

It also points to a lack of coordinated support for carers, which causes health breakdowns for carers and unnecessary and costly hospital admissions for them and their loved ones at end of life, preventing people from dying in their place of choice.

Stephen, the star of Green Wing, Episodes and Dirk Gently, said: “After I graduated from university, my mother Mary was diagnosed with cancer. I spent that whole of that summer with her. On the days when she wasn’t feeling great I sat by her bed playing the guitar, very badly I might add, and did my best to cheer her up. Towards the end we were fortunate enough to have Marie Curie Nurses with us, helping me, dad and my sisters to care for mum at home.

“When my dad James became ill, my sisters and I wanted him to be at home with us too and were put in contact with Marie Curie again. We had the nurses with us for three weeks before dad died. Having Marie Curie Nurses there to look after them both meant that we could be the family we are without having to worry about anything. My parents were the focal point of a large extended Irish family and so having lots of family and friends coming and going was how they wanted it to be. This wouldn’t have been possible without all the support we got.

“I hope this report will raise awareness around the specific needs of carers at this crucial time and help them access the support they need to keep caring.”

Imelda Redmond CBE, Director of Policy and Public Affairs at Marie Curie Cancer Care, said: “At Marie Curie we are passionate about ensuring that people get the best possible care at the end of their life. The majority of people wish to die at home surrounded by their loved ones but this is not achievable unless carers are properly supported.

“This report makes a number of recommendations to improve the current situation for both patients and their carers, based on the first-hand experience of people who have been through this themselves.

“Marie Curie’s experience as a provider of end of life care shows that the needs of carers are best met when they are actually identified as carers and given proper support. This ensures that carers can have the best possible experience of caring and working through their bereavement. We need to get this right as a society.”

The key recommendations of the report include:

• When patients are placed on end of life care locality registers, their carers should be automatically offered a carer’s assessment.
• Many carers are not claiming the benefits and support they are entitled to due to lack of knowledge about which benefits they are eligible for. When a patient is registered on the end of life care register, information of the range of benefits available should be provided to the carer.
• Carers of people at the end of life need to be supported to identify themselves as carers. Health and social care professionals should have conversations with carers about what a patient’s diagnosis will mean for the carer at the point of diagnosis, and be prepared to revisit these conversations as the patient’s condition progresses.
• Health and social care professionals should ensure that carers are included in conversations with the patient about their condition so that they feel as though they are part of an expert care team.
• Support from social care workers makes a huge difference to carers of people at the end of life. Carers need access to personal care for the person they are caring for quickly. Local authorities should do their best to ensure that these applications are processed as swiftly as possible. Ideally, means-testing for applications for personal care at the end of life should be removed by local authorities.
• The majority of people in the UK would like to be cared for and die at home, but it should be recognised that home death is often hard on carers. Health and social care workers should sensitively help carers understand the degree of commitment required to care for someone at home.
• Most people in the UK still die in hospital. Hospital should be sensitive to patient and carer wishes around treatment and pain and symptom control and respond to these quickly. Hospital staff should be prepared to initiate discussions with carers and patients about care at end of life.

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