Around 240,000 carers looking after a loved one with cancer in the UK are responsible for undertaking vital healthcare tasks, including controlling pain, giving injections and managing catheters, according to new research by Macmillan Cancer Support.

A new YouGov survey of 2,004 UK cancer carers reveals that more than one in five (22%) – almost 240,000 of the estimated 1.1 million - perform healthcare tasks such as infection control and changing dressings.

Of these, over half (53%) are doing so without information, instructions or training from a health professional.

These findings come as Macmillan urgently calls for the Care Bill legislation to be changed to ensure the NHS in England identifies and signposts cancer carers to support.

63% of cancer carers who didn’t receive any training, or said the training they got wasn’t enough, say this left them feeling distressed and half (50%) say it has left them feeling frightened. One in three (34%) say they have feared this might result in the person they care for needing to be admitted to hospital. And one in nine say the person they care for has actually been admitted.

Of those who perform healthcare tasks (22%) more than one in three (36%) have had to urgently call a doctor or the emergency services to get support or advice on how to help the person they care for.

Even when training or information is provided, it is not always sufficient. One in five (21%) cancer carers who received some advice or training say it was not enough.

Pamela Digney from Lincolnshire looks after her husband, Roy, 75, who had a cancer removed from his spine. Pamela says:

'My husband is paralysed from the waist down from his operation, so I have to help him with everything. I have to administer morphine patches and liquid morphine for pain relief, as well as help him with his catheter. Infection control is also a constant concern.

'I haven’t been given adequate training or information to help with these things, and it leaves you feeling quite vulnerable when you have to do them on your own.'

With cancer carers having such a vital role in the care and recovery of the loved one they are looking after, it is essential they are supported in their caring role.

The Care Bill places a new duty on local authorities to identify and support carers. Unless the NHS has a similar responsibility, cancer carers will remain hidden and will continue to miss out on vital information, training and support. NHS and local authorities in England must also work more effectively together to increase the number of cancer carers being identified and supported.

Ciarán Devane, Chief Executive of Macmillan Cancer Support, says:

'Not only do cancer carers give hours of emotional support and practical help, they are performing clinical duties. It’s a huge responsibility they take on out of duty and love. Families and carers are the backbone of society and they deserve to be supported.

'Without support, cancer carers can go beyond breaking point which is bad for them and their loved one but is also costly to the NHS and ultimately to the taxpayer. By identifying cancer carers and explaining what information and support is available, health professionals can vastly improve their quality of life and help them to continue caring - which is what they want to do.

'It’s nonsensical for there to be a legal duty solely on local authorities to identify and support cancer carers when it’s actually the health service that have the most contact with them. 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. This cannot wait. As the number of people diagnosed with cancer doubles in the next twenty years2, there will also be a surge in the number of people caring for them.'

Source: Macmillan