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
    +3

    Comment number 45.

    @42.
    shillo

    God help us all if we need to all go private, pay more and get less.

    Totally agree just have to look at the NHS dental charges and the gleam in the dentists eyes when he tells what treatments he has to sell. !!!

  • rate this
    +8

    Comment number 44.

    Modern medicine allows people to live longer with conditions that previously killed them off much earlier. That longevity with a chronic condition puts a huge strain on family members if they are required to provide basic and more complex care duties.
    Let's face it, the burden of care for the elderly almost always falls on women, often just after they've finished raising their children.

  • rate this
    +3

    Comment number 43.

    If you are considered needy enough to deserve some support for a 24/7 demand, the sourcing of care is equally challenging.

  • rate this
    +5

    Comment number 42.

    Some people on this forum are criticising the NHS because it's the 6th largest employer in Europe.
    Could that be because it is a Universal Healthcare provider accessible by over 70 million people, unlike the fragmented services procvided by a plethora of independant and, in many cases, more expensive providers on the continent?
    God help us all if we need to all go private, pay more and get less.

  • rate this
    +4

    Comment number 41.

    Nurses need degrees because they carry out part doctor part nurse work now. Nurses are therefore, rightly, paid more than historically.

    More expensive nurses means fewer nurses though. Therefore instead of nurses carrying out visits it's left to carers - either employed or volunteer family members.

    It can only result in more patients being hospitalised which is surely a more expensive outcome!

  • rate this
    +8

    Comment number 40.

    A huge tier of clip board carrying middle management needs to be stripped out of the NHS and more hands on staff need to be employed. The savings would allow better and more care for all. !!!

  • rate this
    +5

    Comment number 39.

    I find it disappointing we need services at all for this sort of thing

    Once we had close knit families, friendly neighbours and supportive friends where caring for those you love or care for was a natural thing to do without question

    In our rush for progress these structures are now fragmented, and we are left with 'services'

    I'm not sure what can be done to solve this, its more of a lament :/

  • rate this
    +29

    Comment number 38.

    Why is it that care for anyone - elderly, infirm or with terminal illness - seems to be treated as just about the lowest form of employment?

    It isn't a job I feel I could ever handle, partly because I'm not keen on physical contact. Those who do the work because they enjoy the interaction should be recognized as among the most valued in society and trained and paid accordingly.

  • rate this
    +9

    Comment number 37.

    The Government does not understand what things are like outside their narrow group of friends. When they do have problems, they have large incomes which make sorting the problems out much easier, and they don't suffer from crackdowns if they aren't paying the due tax.
    How will carers fare when they have to sign on every day...

  • Comment number 36.

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

  • rate this
    +8

    Comment number 35.

    Interesting that yet another responsibility is put to local authorities. When the announcement was made that more power and responsibilities were to be devolved to local authorities many of us were pleased. Next announcement was to severely cut their funding. Nice way to "set up" your next scapegoat

  • rate this
    +24

    Comment number 34.

    A real boon to Cancer Sufferers would be if the Government would cease using every dirty trick in the book to rob them of Welfare Support.
    Even if you're undergoing the terribly debilitating Intravenous Chemotherapy this Lot reckon you're "Fit to Work" and so do not qualify for help.
    It is an utter disgrace!

  • rate this
    -5

    Comment number 33.

    Wow - what a revelation, the NHS conclude that more training and staff are required.
    We are 22nd in terms of world's population and it takes the world's sixth largest employer to look after us.
    The only thing that needs training are the idiots responsible for running the NHS, allowing ludicrous healthcare to go on along with poaching of staff or NHS consultants moonlighting in private practices.

  • rate this
    +2

    Comment number 32.

    Surely Macmillan nurses are ideally placed to be doing what they call for, so no need or point in this messing about for the NHS.

  • rate this
    +3

    Comment number 31.

    Should my husband become very ill and need daily care, I wouldn't want this to be in the hands of strangers. With training, I could do administer injections, change catheters and give him medication. He cared for me when I had cancer and two rounds of chemotherapy.
    The NHS provides the drugs and specialist care. Basic care and comfort is the family's responsibility - not the government's.

  • rate this
    +3

    Comment number 30.

    This highlights the next phase of 'Care in the Community ' - you are on your own! Such services were provided by District Nurse so why are GP practice nurses not doing it, especially as these patients have been forced out of hospital (saving money). Perhaps government will lay contracts with Addiction charities to provide injection training - cheaper than nurses,

  • Comment number 29.

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

  • rate this
    +6

    Comment number 28.

    It would be good to see more extensive carer surveys, they would possibly reveal some interesting variations?

  • rate this
    +3

    Comment number 27.

    Training the whole population in basic healthcare could be a very good way of reducing pressure on the NHS. Probably there would maybe 5% negative unforeseen consequences (eg wrong self medication) but that would be a net improvement on now.
    The NHS Is brilliant but the universal health care free at the point of need will need many innovation to maintain it with an ageing UK population.

  • rate this
    +5

    Comment number 26.

    Many commenters do not realise that even with the assistance of medical professionals, family needs to help with caring for loved one with a terminal disease. Balance must be struck between making a loved one comfortable & providing adequate medical care. I was given basic training on giving meds intravenously & injections, draining ascites, etc. - necessary for any carer of a cancer patient.

 

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