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 105.

    @97 My experience also Phil they also provided the sitters if needed.

  • rate this

    Comment number 104.

    People who have relatives suffering from cancer always seem to end up relying on the services of MacMillan Nurses..And they must be grateful for that.
    This is 2013.
    Will be still relying on MacMillan Nurses into the next Century?

  • rate this

    Comment number 103.

    I have been a carer.
    I do not want to be cared for, or to put the folk I love through what I have been though as a carer.
    I might help/assistance with suicide. Hopefully, just a prescrition for drugs which I can take myself which will do the job nicely, but I am very concerned indeed that I will not be able to.
    But ALL carers need far more support than they get. And not just cancer carers.

  • rate this

    Comment number 102.

    My wife has worked as a carer for 4 years, she has seen first hand the woeful management of what is, essentially, a traveling salesman problem.

    As a result huge amounts are wasted on 'managers' who couldn't manage their way out of a wet paper bag. I am sure the same is true in the NHS.

    Cut the middle managers, pay the carers and nurses a decent wage and give everyone, family included, training.

  • rate this

    Comment number 101.

    The attrocity that is UK care system is that it is not regulated in the same way as NHS, whether qualified/competent staff or quality of care & even legth of time to provide care to elderly.

    Care of elderly is attrocious by government design.

    They could do something about it, but that would add costs & as the old are vulnerable/weak, they are unlikely to vote or run riot in protest

  • rate this

    Comment number 100.

    Wish everyone had a relative or friends to care for them at what ever age,be it cancer or any other long-term or lifetime physical or mental illness.
    The reality is that many don't,and with an ageing population,all ages having to work for longer & quite often move as well,and as the gov & councils use increasingly euphemistic language for "your on your own",the future looks bleak at best!

  • rate this

    Comment number 99.

    I will not hear a bad word said against Macmillan. The support they gave to my mom (and me helping to care for her) was absolutely brilliant. Eddie, my mom's nurse, was there when she was needed. Carers need support and it should be there when they need it, no question.

  • rate this

    Comment number 98.

    Everyone should be trained basic first Aid.

    Lets start with that!

  • rate this

    Comment number 97.

    I my area the District Nurses do almost all of the hands on personal care and injectable drug and syringe driver support. They are the ones on call 24/7 365 days a year.... They are often the unsung hero's who help families through the darkest of hours.

  • rate this

    Comment number 96.

    It isn't just carers of cancer sufferers who take on a lot of responsibility - my mother had type II respiratory failure which meant that she needed oxygen but she couldn't get rid of the carbon dioxide that is produced in the body after oxygen intake. As my mother couldn't speak or write after a stroke I had to use my own judgment about when to put on her oxygen mask.

  • rate this

    Comment number 95.

    Sadly, we too have a story where the MacMillan Nurses were of no aid whatsoever. Surely, if they want carers to be shown what to do, they are the ones to show them?? Aren't they called "MacMillan Cancer Support?

  • rate this

    Comment number 94.

    My mother died last year in a hospice run by a local cancer charity, Macmillan are not the only cancer charity. My mother wanted to be at home and my father wanted her to be, but what they don't tell you is that often you lose the ability to control bowel and bladder towards the end and she had to have professional nursing, family carers cannot hope to deal with that. The hospice were great.

  • rate this

    Comment number 93.

    What we need is more homes / hospitals where patients can be cared for together. I say this because I live in a rural community and know that any nurse coming out to visit someone in their home spends more time on the road than with the patient. We need to recognise that leaving someone alone in their home is not really the right solution.

  • rate this

    Comment number 92.


    Paper pushers have to be employed by the NHS to correspond with them them so called organisations.
    more Red tape.

  • rate this

    Comment number 91.

    Even the average Mcmillan nurse gives far more care than the local authority 10 minute wonders. The one looking after my grandmother made absolutely sure that her routine tablet requirement was fully understood by my mother, gave her phone number for any problems, and was there beside her with the family when she finally passed away.

  • rate this

    Comment number 90.

    Juvenalian Precariat

    'What's wrong with having Cancer specialise nurses and Wards in the NHS?'

    You haven't yet explained how Macmillan adversely impacts the NHS provision.

  • rate this

    Comment number 89.

    What's wrong with having Cancer specialise nurses and Wards in the NHS?

    MacMillan is just a smoke screen for privatization.

  • rate this

    Comment number 88.

    This lack of care for cancer patients should be used as a stop smoking campaign,

    STOP SMOKING because nobody cares!

  • rate this

    Comment number 87.

    My aunt is a Macmillian nurse and works exceptionally hard! Without investment there can be no staff, it is a simple equation but one so often forgotten.Family carers do not generally claim a wage for their work,so why would the government or health service want to bring attention to them as they would lose a massive unpaid labour force! If the NHS could help that would be great,but i'm realistic!

  • rate this

    Comment number 86.

    That is my point Hilary. Hospice just provides a vital service and it doesn't need to keep coming out with horror stories to grab more and more funding.

    It provides genuine care without layers of well remunerated managers and directors.


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