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Exclusive: Vital that cancer diagnosis given in ‘right way’, says senior charity nurse

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Clinicians must ensure they break the distressing news of a cancer diagnosis in person, a nursing has stated, after new research revealed some patients were told over the phone or in a letter.

Most patients – 84% – were told they had cancer in a private face-to-face appointment with a healthcare professional, according to a survey commissioned by Macmillan Cancer Support.

“If a nurse is breaking the news, it’s crucial that they do it face-to-face”

Kate Goldie

But it also found that 5% were told in front of strangers and 7% got the news over the phone or in a letter.

Kate Goldie, senior information nurse at Macmillan Cancer Support, told Nursing Times it was vital patients were told they had cancer in the right way and in the right place.

“Learning you have cancer over the phone, from a stranger, or simply figuring it out can be deeply distressing and may mean a patient doesn’t get the information they need,” she said.

“If a nurse is breaking the news, it’s crucial that they do it face-to-face to ensure the patient has understood the information given to them but also has the immediate support following the consultation,” she added.

“Patients must be given clear information about their treatment options”

Kate Goldie

In all, 1,020 people who had been diagnosed with cancer took part in the online survey carried out for the charity in October last year.

Of those, 5% said they were told face-to-face by a healthcare professional in a hospital ward, waiting room or other public area, “with other people I didn’t know nearby”. In addition, 7% said the upsetting news was delivered in a phone call or letter.

The findings feature in a wider report published this week by Macmillan, which said getting a cancer diagnosis was now as common a “life milestone” as marriage or getting a degree.

The report – titled The C-Word: How we react to cancer today – also suggested cancer was the disease people in the UK feared most, with many still feeling a diagnosis was like being handed a death sentence.

National surveys of cancer patients show most people – 82% – are told they have cancer by a hospital doctor. However, 5% are told by a nurse.

Macmillan Cancer Support

Cancer diagnosis must be given in person, states nurse expert

Kate Goldie

Meanwhile, 2% say they were not told by a healthcare professional, instead getting the news from a friend or relative or working it out for themselves.

Having a clinical nurse specialist at the initial appointment was especially beneficial, said Ms Goldie, as they could answer questions and often became the main contact for a patient.

Nurses should advise patients to bring someone with them, she noted. The survey of people who had a cancer diagnosis found 45% reported getting that diagnosis was “the worst news imaginable” while 34% said there were in a daze and could not take anything in.

“Family and friends can help people understand often-complex information they are being told about their prognosis and treatment options,” said Ms Goldie, as part of a series of top tips she gave Nursing Times on how to ensure patients have the best possible experience when they are diagnosed.

“People often don’t know they can bring someone to their appointment, meaning they miss out on vital emotional support at the point of diagnosis,” she told Nursing Times.

She said it was important to ensure a patient leaves the consultation understanding their diagnosis and where to go for additional information.

“However, a nurse’s role doesn’t end there,” she said. “Patients must be given clear information about their treatment options and the potential longer-term impact of that treatment as early as possible.”

“Nurses can play an important role in signposting patients to community support”

Kate Goldie

Macmillan has developed a Recovery Package that kicks in straight after diagnosis, which includes patients filling in an Electronic Holistic Needs Assessment. Trusts and other organisations can sign up to use the assessment tool for free.

Ms Goldie said nurses also had an important role in directing people to wider support.

“Patients must know what support is available to them from the get-go to deal with the impact of cancer,” she said.

“This can range from struggling to pay their mortgage because they finances have been hit when their sick pay runs out, to worrying about their relationship because of a diagnosis,” she said.

She added: “Nurses can play an important role in signposting patients to community support in their local area.”

For example, Macmillan have information and support centres across the country, which offer services including benefits advice, yoga, nutritional advice and wig and beauty services.

How nurses can provide the best support for cancer patients at diagnosis

Kate Goldie, senior information nurse at Macmillan Cancer Support, gives her top tips on making sure patients receive the best possible experience when they are diagnosed.

 

  1. Find the right setting

Breaking the news someone has cancer is a very delicate and sensitive matter. So, it’s really important that people are told in the right setting – a face-to-face private appointment with a healthcare professional. Currently, most people (84%) are told in this way, but one in 20 (5%) are told in front of strangers, and one in 14 (7%) are told over the phone or by letter, when no face-to-face support is available. Some people weren’t even told by a healthcare professionals, with 2% reporting that a friend or relative told them or that they worked it out for themselves.

Ms Goldie says: “Learning you have cancer can be a real shock. It’s really important that during that consultation, people are told in the right way and that means being told in the right place. Learning you have cancer over the phone, from a stranger, or simply figuring it out can be deeply distressing and may mean a patient doesn’t get all the information they need. If a nurse is breaking the news, it’s crucial that they do it face-to-face to ensure the patient has understood the information given to them but also has immediate support following the consultation.”

 

  1. Ensure the right people are there

Having a clinical nurse specialist (CNS) at the initial appointment is really beneficial, as they can answer initial questions and often become the primary contact for a patient throughout their experience.

Research shows that giving patients the name of the CNS in charge of their care is one of the most important factors in ensuring they have a good experience. Patients who have a CNS are:

  • More than twice as likely to be given information about financial help or benefits
  • Twice as likely to be told how their cancer could affect their work life or education
  • 55% more likely to be told about the long-term side-effects of treatment
  • 48% more likely to be given written information about their cancer

In addition to a CNS, it’s important that patients have family or friends there to support them. Just under half (45%) of people said it was “the worst news imaginable”, and one in three people (34%) say they were in a daze and couldn’t take anything in. A person might not take in everything you say so, where possible, a nurse should advise their patients to bring someone with them to the appointment. “Family and friends can help people understand the often-complex information they are being told about their prognosis and treatment options. People often don’t know they can bring someone to their appointment, meaning they miss out on vital emotional support at the point of diagnosis”, said Ms Goldie.

 

  1. Make sure patients have the best information

“One of the most important things is to make sure your patient leaves the consultation understanding their diagnosis and knowing where they can go for additional information. However, a nurses role doesn’t end there. Patients must be given clear information about their treatment options and the potential longer-term impact of that treatment as early as possible. This is so that healthcare professionals and patients can identify areas that might impact their life later in their cancer experience and take steps to reduce this,” says Ms Goldie.

At the moment, around 625,000 people in the UK are estimated to be facing poor health or disability after treatment for cancer. This can include crippling fatigue, bowel and urinary incontinence, and sexual difficulties. The fallout can be far-reaching on their ability to live their life as they wish, affecting their families, finances, relationships, and ability to work.

Macmillan has developed and tested a Recovery Package. This is a package of care designed to identify people’s needs and make sure they are addressed. It stops them from falling through the gaps between their hospital and their GP practice and gives those who are able the tools and support they need to take control of their own health.

“Taking action so that people can be supported to live as well as possible after their treatment needs to start from the moment they are diagnosed. That’s why the first stage of the Recovery Package happens just after diagnosis and before the start of treatment. This gives people an opportunity to record their needs and concerns at the earliest point so they can be signposted to support as soon as possible. Nurses can get their patients to fill out an online questionnaire called an Electronic Holistic Needs Assessment to identify what support they might need,” says Ms Goldie.

 

  1. Make sure patients know what support is available to them

Ms Goldie says: “Patients must know what support is available to them from the get-go to deal with the impact of cancer. This can range from struggling to pay the mortgage because their finances have been hit when their sick pay runs out, to worrying about their relationships as result of a diagnosis. Nurses can play an important role in signposting patients to community support in their local area.”

Macmillan have Information and Support Centres located across the country which offer a range of support services such as benefits advice, yoga, wig and beauty services, and nutritional advice.

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