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Needs of cancer patient carers 'overlooked by NHS'

The NHS is failing to support people who are caring for loved ones with cancer, a charity has warned.

Macmillan Cancer Support said that so-called “cancer carers” are being “overlooked” by the health service. It cautioned that many carers are missing out on much-needed practical, emotional and financial help.

The comments come after a poll of more than 2,000 cancer carers found that many were not signposted to support available for them as a carer.

Almost two-fifths (37%) said that they were not given any information or advice about the services available to them by a health professional.

And of the 558 people who were with their loved one when they were diagnosed with cancer, 43% said the health professional did not give them any advice or point them in the right direction of support.

A spokeswoman said that the “chronic” lack of help might explain why almost half of those questioned said their caring responsibilities had affected their emotional and mental health.

The survey was released by the charity as it called for the Care Bill to be amended so the NHS in England has a responsibility to identify cancer carers.

“Many cancer carers are buckling under the relentless strain of caring because they aren’t getting the support they need,” said Macmillan Cancer Support’s chief executive Ciaran Devane.

“This is despite the fact they provide care worth billions a year,” he said. “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,” he added.

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Readers' comments (3)

  • Macmillan are a fantastic organisation for championing issues affecting cancer patients and their carers. The problems they highlight here are often also experienced by patients and carers affected by other chronic and/or progressive conditions.

    There are a multitude of reasons why advice and support for patients is so poor. Some of it is to do with poor staffing levels and resources. However, there are major problems with lack of cohesion of services available and lack of awareness amongst staff.

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  • Macmillan are great, as far as it goes. They provide information, demystify anything you can't understand and provide a link to consultant led teams.

    I could really have done with some direct care help with my mum when she died at home from gall bladder cancer. I was left essentially on duty for just over 7 weeks, 24 hours a day, every day. Her GP didn't believe palliative care was necessary and he refused to refer her.

    My boss just gave me all my leave at once and was marvellous.

    The hospice were great in spite of the lack of referral - they couldn't visit or see her, but they helped me over the phone when I needed advice. The Red Cross helped with equipment like a commode and a wheelchair.

    The DN was less helpful - she said 'Oh, you're a nurse! You won't need me then.' That was the last we saw of her, until she showed up for tea and cake at the funeral.

    I think we need much more palliative care for people at home and it mustn't depend on GP gatekeeping. Actual need should be the main criterion for help.

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  • Ellen Watters

    I work for a cancer charity (Not Macmillan), I answer the Freephone helpline and we get almost as many calls from carers as we do from patients.

    Carers needs are not being met and they have such a tough time of it, its important that this is recognised.

    Carers not only have to familiarise themselves with the ins and outs of the patients cancer or illness, but the also have to be walking talking diaries knowing about appointment times and dates, about drug times and possible side-effects and interactions and they have to field calls from other family members.

    The burden on them is enormous and it can be overwhelming.

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