5 November 2015
*Macmillan calls for urgent action from the NHS in England and local authorities as six months after Care Act carers still left unsupported*
More than four in ten (45%) cancer carers doing healthcare tasks, such as giving medication, infection control and changing dressings, say they don’t get any training from health or social care professionals in how to do these, according to new research from Macmillan Cancer Support.
And when family and friends looking after a loved with cancer do get this training, they report spending on average only twenty minutes with health or social care professionals. A third (32%) receive 10 minutes or less.
These findings come from a new You Gov survey of over 2,000 UK cancer carers of which one in five (18%) provide medical assistance such as giving medication, infection control and changing dressings.
Macmillan is very concerned that too many of the 1.1 million cancer carers in the UK are still not being supported, despite the introduction of the new Care Act in England over six months ago. This placed a requirement on local authorities to work with the NHS to identify and support carers.
Leaving carers to cope on their own is putting cancer patients’ health at risk. One in six (17%) cancer carers who carry out healthcare tasks say the person they’re looking after has ended up in hospital because of their lack of information or training.
Aside from clinical care, cancer carers provide a range of essential support including feeding, washing and dressing. Even those not directly carrying out healthcare tasks are struggling. In total, around 33,000 of all carers looking after a loved one with cancer in the UK say the person they’re caring for has ended up in hospital because of their lack of information or training.
Cancer carers can even find themselves excluded from discussions between their loved ones and healthcare professionals. Of those who attended hospital appointments, 1 in 5 (20%) say they’ve been asked to stay outside the room against their, or the person they’re caring for’s, wishes.
When friends and family have been allowed in the room during hospital appointments, a quarter (24%) say they have felt ignored or overlooked.
Carers do not always associate with the term ‘carer’ and don’t often seek out help, putting the needs of their loved one first. This means they can remain hidden, caring in isolation, with health and social care professionals unaware they’re struggling. It is therefore essential that health and social care professionals proactively identify carers and ensure they have the support and training they need.
Nida Tariq, 23, from London, cared for her mother who was diagnosed with terminal lung cancer in July 2012 and died in March 2014. She says:
“Mum was at home and she was in terrible way. I honestly don’t know how to put into words how difficult it all was.
“She was bigger than me and I would have to lift her and try and make sure she wasn’t choking on her sick, reaching for a bag and trying to clean things. I would be trembling trying to hold her and I would just exhaust myself. I don’t know how I did it.
“Carers have to carry out crucial tasks and it’s terrifying not knowing if you’re doing it right – it’s not only dangerous for them but it’s traumatising for the carer. I had no support or respite and I couldn’t afford, nor felt able, to leave my mum. More needs to be done to provide support and training to carers.”
Juliet Bouverie, Director of Services and Influencing at Macmillan Cancer Support says:
“Family and friends often perform vital health care tasks for their loved ones when they’re going through cancer whilst others provide essential emotional support and practical help. These are huge and often frightening responsibilities. It is unfair to put carers in a situation where they are left alone not knowing how to carry out caring tasks or manage the side effects of treatment if something goes wrong.
“Without support cancer carers can accidently put their loved one’s health at risk. We would never expect nurses or other professionals to do these tasks without training so why are we leaving friends and family in this vulnerable situation? It is also costly to the NHS, and ultimately to the taxpayer, as a lack of support for carers could be leading to increased hospital admissions.
“The Care Act came in to force in April and now local authorities and organisations across the NHS must urgently work together to put it into practice. Health professionals often don’t know how to identify and support carers so these organisations need to ensure staff have the right information and resources to be able to do so.
“Macmillan has already developed practical guidance for health care professionals on how to identify and support cancer carers which we urge organisations to adopt and implement.”
If you’re a health or social care professional you can find more information and our guidance on our website here
For further information, please contact:
Charlotte Morris, Media and PR Officer, Macmillan Cancer Support
0207 091 2467 (out of hours 07801 307068)
Notes to Editors:
 Macmillan Cancer Support/YouGov online survey of 2,002 UK adults either currently caring for someone with cancer, or who have cared for someone with cancer within the last three years. Fieldwork was undertaken between 15 – 27 September 2015. Survey data has been weighted to the known age and gender profile of UK cancer carers (using 2011 Macmillan Cancer Support/Ipsos MORI ‘More than a Million’ research), and to be nationally representative by region. 38% of carers within the survey reported not receiving enough information or training to support them in looking after someone with cancer, and amongst this group, 8% said this resulted in the person being admitted to hospital, which equates to 3% of all carers. This percentage has been applied to the estimated total number of carers in the UK to arrive at a population estimate of 33,000. The estimated total number of current carers is derived from Macmillan Cancer Support/Ipsos MORI research in 2011 that found that 2.1% of the UK population aged 15+ were currently caring for someone with cancer. Converted to a population estimate (using ONS 2010 Mid Year Population estimates) this equates to 1.1 million adults aged 15+.
 38% of carers within the survey reported not receiving enough information or training to support them in looking after someone with cancer, and amongst this group, 8% said this resulted in the person being admitted to hospital, which equates to 3% of all carers. This percentage has been applied to the estimated total number of carers in the UK to arrive at a population estimate of 33,000. The estimated total number of current carers is derived from Macmillan Cancer Support/Ipsos MORI research in 2011 that found that 2.1% of the UK population aged 15+ were currently caring for someone with cancer. Converted to a population estimate (using ONS 2010 Mid Year Population estimates) this equates to 1.1 million adults aged 15+.
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200
today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00
(Monday to Friday, 9am–8pm) or visit macmillan.org.uk