The NHS is failing to identify and support people caring for a loved one with cancer – even though the economic value of the care they provide totals around £14.5 billion a year1, according to Macmillan Cancer Support.
Over a third (36%) of carers who were with their loved one when they were diagnosed by a health professional, were not asked whether they would be providing care, according to a new YouGov survey of 2,004 UK cancer carers2.
More than two fifths (43%) of those present at diagnosis say the health professional didn’t give them any information or advice about support available to them as a carer at this point, and almost two fifths (37%) say they didn’t receive any information or advice at any other point while they were caring2.
This comes as the charity calls for Care Bill legislation – due to be debated in the House of Commons today (Thursday 9 January) – to be amended so the NHS in England has a responsibility to identify cancer carers.
By not being identified and signposted to information and support, cancer carers are potentially missing out on much-needed practical, emotional and financial help. This chronic lack of support may explain why almost half (46%) of cancer carers say caring affects their emotional and mental health and one in six (13%) say it causes physical health issues such as sleep and digestive problems3.
Joseph De Souza, 62, from Kent cares for his wife Melita who has a tumour in her lung. He says:
‘I wasn’t qualified or prepared to care for my wife when she became unwell and I worried constantly about whether what I was doing was right. I have been caring for her for just under two years, but not a single person working in the NHS has asked me if I have taken on this role or offered me any information on what support there is to help me as a carer.
‘Caring full-time has put a real strain on me emotionally and financially and I’ve had to cope with it alone.’
One in ten cancer carers (10%) – or an estimated 108,000 – provide a staggering 50 hours or more of care a week3. As well as emotional support, cancer carers perform healthcare tasks, cook and clean, and provide personal care.
Ciarán Devane, Chief Executive at Macmillan Cancer Support, says:
‘Many cancer carers are buckling under the relentless strain of caring because they aren’t getting the support they need. This is despite the fact they provide care worth billions a year.
‘Procedures and systems aren’t in place to ensure the NHS routinely identifies cancer carers and signposts them to much needed practical, emotional and financial help.
‘The legal duty, currently just on local authorities to identify carers with unmet needs, must be extended so the NHS has a similar responsibility. This makes much more sense as cancer carers have far more contact with health professionals than their local authority.’