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Supporting the crucial role of carers

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Working with carers improves patient experience while cutting demands on services

Jane Lynch spends her working life caring for people with cancer. As lung clinical nurse specialist (CNS) at the Harley Street Clinic, Ms Lynch is there to support patients through diagnosis, treatment and beyond. Yet, to do so, she estimates she spends only about half of her clinical time with patients who have cancer.

“The focus used to be very much on supporting the patient through treatment and symptoms. I would say that, in the past 15 years, that axis has shifted,” explains Ms Lynch, who is chair of London Lung CNS Nurse Forum. “For me, certainly, easily 50% of my clinical time is now spent with carers.”

This shows the crucial importance of this group – the friends and family members who care for a loved one with cancer. 

“Without doubt, having carers involved improves the patient’s overall experience”

“Without doubt, having carers involved improves the patient’s overall experience. It also improves the carers’ overall experience when we acknowledge that and involve them, and it probably improves the healthcare professional’s satisfaction in dealing with the patient and the carers.”

Carers are a valuable resource. According to research from Macmillan Cancer Support, more than one million people in the UK care for someone with cancer, each year, offering unpaid support estimated to be worth a total value of £14.5bn. It is no coincidence that the Care Act explicitly requires health bodies to work with local authorities to identify carers with unmet needs.

It seems likely that many people fall into this category. More than half of carers surveyed for research by Macmillan in 2011 said they received no support – even though the vast majority said that their caring role was affecting them emotionally, financially or professionally. Yet many said they did not consider themselves to be a carer.

“…they just see that they are a husband, a wife or a child doing what they do because they love the person who is the patient”

Carol Gent, community Macmillan specialist nurse in palliative care at Lincolnshire Community Health Services Trust, explains: “In my role, we say right from the get go that we’re there for the person with the condition, but equally we are there for their carers, whether that be husband, wife or child.

“But I would say over half [of the carers] I work with wouldn’t see themselves as carers – they just see that they are a husband, a wife or a child doing what they do because they love the person who is the patient.”

It is a theme echoed by Cleo Dlomo, Macmillan palliative CNS at the London Clinic. “There’s one lady who said to me: ‘I’m not a carer, I’m his wife.’ But we knew that she was doing certain things that identified her as a carer.”

Commonly, that will be providing emotional support. It can also involve practical help such as doing the shopping, picking up prescriptions or helping with personal care. Without such support, the person being cared for could not cope.

Identifying carers early can help reduce the demand for services while also improving the patient experience. 

To do so, Ms Lynch suggests healthcare professionals sometimes also need to get beyond the term “carer”. 

“I think that more and more, our allied healthcare professionals and associated healthcare professionals are also recognising carers’ importance”

“We often see carers as formal, having to be assessed, getting Carers’ Allowance and so on. But often, when you’re trying to identify the carer, you don’t need to use that word or, if you do use it, you simply explain it,” she says.

While supporting carers is part of the clinical nurse specialist role, she feels it is becoming a more widely recognised issue. 

“I think that more and more, our allied healthcare professionals and associated healthcare professionals are also recognising carers’ importance,” she says.

Increasing numbers of organisations, for instance, have a carer policy or carers’ champions. The idea is to help staff identify carers and make referrals to the right support, be it financial, spiritual, practical or emotional. In the first instance, it may simply be a case of referring to a Macmillan specialist nurse or telling people about the resources on the Macmillan website.

The issue for manynurses will be one of time, but Ms Lynch points out that sometimes it is the smallest acts that have the most impact. “Very simple things like saying to carers ‘you’re doing everything right’ and acknowledging that what they’re doing is extremely difficult, has a huge, huge impact.”

Claire Read

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