Cancer carers have inadequate training, says charity


Shannelle, 20, has been caring for her mum since she was 14

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Some carers looking after cancer patients in the UK are carrying out vital healthcare tasks without always having adequate training, according to Macmillan Cancer Support.

They asked more than 2,000 past and current carers about support they gave.

Twenty-two per cent said they had dealt with specific healthcare tasks like administering medicine and pain relief, while others had to give injections.

The charity wants the NHS to do more to support carers of people with cancer.

Start Quote

Families and carers are the backbone of society and they deserve to be supported.”

End Quote Ciaran Devane Macmillan Cancer Support

There are estimated to be around 240,000 carers looking after family members with cancer in the UK.

Some of the carers surveyed by Macmillan said they had to change dressings or even manage a catheter.

Fewer than half said they had received training from a healthcare professional.

'Identify carers'

Macmillan Cancer Support is pressing for an amendment to the Care Bill, which is due in the Commons later this month, placing a specific duty on the NHS in England to help cancer carers.

A spokesperson from the Department of Health agreed that there needed to be better joint working.

A carer's story

Shannelle, 20, from London, has been caring for her mum, Yvonne, since she was 14.

Yvonne has had lung cancer twice. She also has asthma and arthritis and had two knee replacements after recovering from the cancer.

Shannelle says: "I instantly had a big responsibility. I wanted to help but didn't realise how much I had to do. I was giving her tablets, giving her injections to prevent her blood clotting and checking she was breathing at night.

"Sometimes I didn't know the name of the drugs she was taking. I just used to memorise the colour and shape of them to work out which ones to give her."

Shannelle has an older sister and a supportive family who regularly helped with shopping and cooking.

She still lives with her mum and now studies health and wellbeing at university.

"I did so much nursing in my childhood, it just came naturally."

"Proposals already in the Care Bill will mean that local authorities will have to co-operate and work closely with the NHS to identify and support carers.

"We have also provided £400m to the NHS for carers' breaks and given over £1.5m of funding to help develop initiatives with GPs, nurses and carers organisations to train people to help support them in their caring roles."

In the survey carried out by YouGov for Macmillan Cancer Support, 63% of cancer carers who did not receive any training or said their training was not enough, were left feeling distressed and frightened.

One in three of this group said they were scared that their lack of knowledge could result in the person they care for being admitted to hospital.

'Responsive system'

A spokesperson for NHS England said not enough had been done in the past to ensure carers get the right training and support.

"Closer partnership working is already under way and the Integration Transformation Fund will act as a further catalyst for this.

"Health and Wellbeing Boards have been established, which bring together local clinical commissioning groups and local authorities to gain a shared understanding of the health and wellbeing needs of the community and develop a more responsive health and social care system which delivers better services and reduces health inequalities."

Ciarán Devane, chief executive of Macmillan Cancer Support, said cancer carers took on a huge responsibility and deserved more help.

"Not only do cancer carers give hours of emotional support and practical help, they are performing clinical duties. Families and carers are the backbone of society and they deserve to be supported.

"The Care Bill legislation must be amended to ensure the NHS in England has a responsibility to work with local authorities to identify and signpost cancer carers to appropriate services.

"As the number of people diagnosed with cancer doubles in the next 20 years, there will also be a surge in the number of people caring for them."


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  • rate this

    Comment number 25.

    From personal experience I would say more training is required all over the NHS. It's a shadow of what it used to and ought to be, very very sad.

  • rate this

    Comment number 24.

    Unsung heroes comes to mind on this one.

    More training and support for the carers please because it's clear that any more going into NHS trusts is ending up as pay rises for the execs.

    Start giving more public money to the likes of Marie curie and Macmillan so they can help out more. Charity donations are no longer enough.

  • rate this

    Comment number 23.

    Well someone voted this lot in, wasn't me!

  • Comment number 22.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this

    Comment number 21.

    I find it hard to believe that the NHS is the largest employer in Europe but there is still a requirement for family members to care for ill relatives.
    There has to be a cull of NHS middle managers and the saved funds need to go on more nurses and doctors.
    It's a disgrace charities like McMillan are needed to help support cancer patients. How can £64 billion not be enough for robust healthcare?

  • rate this

    Comment number 20.

    I do not know any of the answers to these issues. But cancer care charities are where I make my only donations and contributions.
    As a human, I am disgusted that we have not found a way to offer a better death than the ones Mother Nature allows for.

    Until we are allowed to die as a choice in a dignified manner, we must support those who help us with the hideous death we're resigned to.

  • rate this

    Comment number 19.

    15 - Lemog - I totally agree with you, but I think this is across the board. Ever since Margaret Thatcher started to dismantle the care system in the 1980s, it has fallen to the friends, family neighbours etc of patients to become unpaid, largely ignored carers, and it is a disgrace. I worked in psychiatry nursing back then and knew what would become of our 'care' system, a money saving exercise.

  • Comment number 18.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this

    Comment number 17.

    Now perhaps people will understand what the 'Big Society' is all about.
    Levels of professional support previously provided by the state and funded by the honest hard working British Taxpayer are withdrawn leaving a dwindling level of qualified people to train carers and relatives to cope with the needs of an aging population.
    Tax cuts and low employment mean loss of services we hold dear.

  • Comment number 16.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this

    Comment number 15.

    I wouldn`t disagree that Carers need more training but the big scandal here is that this is nursing on the cheap. All cancer patients should have highly trained staff who tend to their needs and not leaving it to relatives who are providing 24 hour care for their loved ones out of a sense of duty and obligation

  • rate this

    Comment number 14.

    Usual solution more training. We found it in the area of dementia caring. Its all the authorities want to offer, training and advice. Any practical help, forget it, that is until they have wrecked your health too and then need to care for one or 2 more patients besides.

  • rate this

    Comment number 13.

    While cancer carers do need more training so does the care of patients with other terminal conditions. Hospices are closely associated with cancer as are children's hospices but heart conditions etc are not given the same priority for terminal care although the patients and carers face similar problems.

  • rate this

    Comment number 12.

    The first thing that strikes me is why are so many people left without any care from healthcare professionals in the first place?

    I guess this is the big society for you, if you're lucky you get a family member to look after you untrained and unpaid and if you're unlucky then what?

  • Comment number 11.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this

    Comment number 10.

    I can only agree with this article. Having looked after both my husband and my mother, who both died from cancer. It is very scary. I had to deal with catheters with my husband and dangerous meds with my mother. The medical profession assume that you know everything, which is a huge mistake. It might have saved many trips to A&E had they told us what we should do, with my husband.

  • Comment number 9.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 8.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this

    Comment number 7.

    As someone who admires the work of Macmillan cancer support it saddens me that the 1st three responses on this forum to their positive action in addressing the issue are 1) Cancer treatment professionals don''t care, 2) all about race and immigration and 3) referred for consideration.
    Our Government have succeeded in making us as self centred and obnoxious as in the 80's. Thatcherism flourishes.

  • rate this

    Comment number 6.

    My friend died yesterday from cancer. thanks to all the volunteer that made is comfortable death at home yesterday possible. Steeve contribute 50 years to the tax and was left to be cared by is wife.According to social services Steeve did not meet criteria for help. His brave and strong wife cared for him until few days before he died.It is sad with the amount of tax we pay our own people struggle


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