When Fiona O’Kelly’s widowed mum was diagnosed with leukaemia two years ago, her life changed overnight. “It’s like our roles suddenly flipped,” she recalls. “Mum used to help me look after my two boys but now I look after her. She was independent up to then but her cancer and the treatment have left her frail and affected her memory.

“There are times when I think I can’t cope but I know staying in her own home and being cared for by family is the best thing for Mum.”

O’Kelly, whose sons are 10 and 16, negotiated a year off work following the diagnosis, and has since dropped her hours from four to two days a week. Her husband has also changed his working hours to minimise childcare costs.

As well as running her own Birmingham home, she visits 78-year-old Eileen – who lives 10 minutes away – up to four times daily, stays over two nights a week, cooks, cleans, manages her mum’s finances and organises and accompanies her to medical appointments. She also administers her mother’s complex regime of chemotherapy tablets and monitor any side effects. Eileen is now in remission, but the caring responsibilities remain.

O’Kelly says: “As a carer, you are trying to keep everyone happy but there are times when I just want to scream. I’m constantly spinning plates – my 10-year-old is still quite dependent on me. As we wait hours for a 15-minute medical appointment, I’ll be watching the clock and worrying about the school run. I couldn’t do this without my husband’s support, and I’m lucky to have friends and family to call on when things go wrong.”

Research by Macmillan and Ipsos Mori suggests as many as 1.1 million people across the UK are supporting someone with cancer. Just over 60% are women, and on average they spend 15 hours a week caring, with a number giving significantly more.

A sudden cancer diagnosis can throw people into caring unprepared. The emotional and financial toll can be huge, especially when carers are supporting a parent, spouse, older person or someone with progressive cancer. Older patients may have additional chronic illnesses, meaning the care is more complex. And carers may also be looking after children or elderly relatives, or may themselves be older or have medical conditions.

Emily Holzhausen, director of policy at Carers UK, has found carers often put off their own medical check-ups or treatment because they cannot find cover. The charity, which runs a helpline and an online forum, believes the NHS has a duty of care to carers, which it would like to see enshrined in official guidelines.

“Carers need more support,” she says. “There is a moral duty to make sure they are healthy and able to fulfil the role to the best of their abilities.

“Carers often find themselves in a weird situation where professionals are talking to the patient, but the person who may end up managing their case is ignored. Confidentiality is vital and needs to be properly negotiated but the person who is giving the support needs information.”

Her views are echoed by a study by King’s College London (KCL) and Guy’s and St Thomas’ NHS foundation trust, due to be published later this year.

Over the past 20 years, there has been a shift in the way cancer care is delivered, with most patients treated as outpatients and sent home after chemotherapy sessions. While this is positive, many carers’ responsibilities now include monitoring and managing treatment side effects and contacting medical staff should patients become unwell.

Emma Ream, professor of supportive cancer care at KCL, says: “Research into the needs of carers of people undergoing chemotherapy has been neglected. We found there’s a lot of anxiety among carers and a lack of confidence about what is normal and what isn’t. Insufficient knowledge of chemotherapy side effects can result in life-threatening delays in seeking help when symptoms arise.

“In the days after receiving chemotherapy, a patient can become very unwell very quickly. Studies show that some patients and carers delay seeking help when signs of inflection arise, which can result in patients becoming severely unwell and this can place their lives at risk.”

In the study, researchers found that carers are often not told how best to support the patient or where they can go for practical or emotional support. The team worked with carers and health professionals to co-design a new support package, including a DVD which carers watch with a chemotherapy nurse – followed by a discussion about any concerns. An accompanying information booklet contains useful facts, explanations, phone numbers, maps and details of support available. Ream wants this approach to be picked up by other health trusts.

She says: “What we have at the moment is patchy – there will be some hospitals which do it very well and some places which largely exclude carers altogether.

“Carers are vital – they are walking the cancer journey with the patient and providing so much emotional support. We need to harness this and to think about supporting them more systematically. This is important for the wellbeing of patient and carer alike.”

http://www.guardian.co.uk/society/2013/jun/26/carers-cancer-patients-support