Powerful University of Sussex film shows how to talk to someone with a terminal illness

• ITV News reporter Rachel Hepworth speaks to research lead, Professor Dame Lesley Fallowfield, about the important role friends and family play in a patient's quality of life.

If you discovered that a friend or relative had just a short time to live, would you know what to say or do, to help them?

It can be incredibly difficult. People with the best of intentions may say something that makes the situation worse, or end up not saying anything at all.

Now experts at the University of Sussex have made a powerful film to try and help us do the best for our loved ones at the most difficult of times.

"We're not very good at dealing with mortality," says Dame Lesley Fallowfield, lead author of the study and Professor of Psycho-Oncology at Brighton and Sussex Medical School.

"With the best will in the world, trying to make things better often results in saying exactly the wrong thing.

" Advances in medicine mean we can treat people in so many more complex and amazing ways now.

"The downside of that is that from a psycho-social point of view, we're less equipped to deal with death."

• "They Just Don't Know What To Say or Do" - a powerful film made about our difficulty talking about terminal illness

More than a hundred women with advanced, or stage IV breast cancer, were asked about their experiences and quality of support after diagnosis.

Shockingly, while more than half said that emotional support was lacking in the medical profession, the research also showed that patients were reliant on friends and family to fill that gap.

But in many cases, loved ones were ill-prepared or unable to provide the right help, or unwittingly made the situation worse.

"They just didn't know what to say," says mum-of-four Lesley Stephen from Edinburgh, who was diagnosed with secondary breast cancer in 2014 and given a life expectancy of one to two years.

"When people say to you- 'you'll be fine,' - they know someone who lived for many years with advanced breast cancer - it's not helpful because while you want to stay hopeful as a patient, you need to be realistic as well, and I know there's no cure.

"It's as if they're trying to be optimistic for themselves rather than you."

The study, funded by the breast cancer charity Make 2nds Count for which she is a trustee, prompted the research team to produce a film, "They Just Don't Know What To Say or Do."

It explores how friends and family can better support those living with the disease.

Based on patient quotes from the study, it applies to anyone suffering from a terminal illness, or indeed anyone coping with a bereavement.

"I think one of the saddest things we witnessed was the numbers of patients whose family and friends had just distanced themselves," says Professor Fallowfield.

"They may have been there at the beginning, with cards and flowers, but as the disease progresses, many of these friends, probably because they didn't know what to say or do, simply disappeared."

• Lesley Stephen says friends need to face up to the diagnosis.

Many of the experiences highlighted in the study are heartbreaking, with actors playing the part of five women who are representative of the responses.

"I was really sad seeing friends cross the road so they didn't have to speak to me," says Sue, whose breast cancer has returned after eight years in remission.

"My brother keeps asking me how many months I've got left to live like I'm going to drop down dead. I've stopped wanting to see him now, it makes me feel so bad."

Andrea, in her 30s, has had breast cancer for three years: "One colleague who I used to work with tells me how busy they are and how nice it must be to have time off work.

"I also write a blog, and some family members have told me they've stopped reading it now."

Sophie, a mum in her 20s with two small children says: "Someone asked me how I didn't know I had breast cancer for so long that it had spread- that just made me feel so guilty.

"My partner just pretends it isn't happening, but he's unable to support me emotionally.

"I wish someone had told him how upsetting it is for a mother to be told she may not live to see her children grow up."

Much more useful, says Professor Fallowfield, can be practical help- and sometimes, just being there.

He added: "Patients said they wanted people to just listen to them, and not come up with miracle cures, or silly pat phrases like 'We've all got to die of something,' or 'we might both be hit by a bus tomorrow.'

"And don't be scared of shedding a tear if the patient does- don't be scared, if you have a physical relationship- still hug them and touch them.

"People feel very socially excluded, emotionally excluded when they've got advanced disease, and there's a lot you can do, even practical things like cooking a meal, taking them to hospital appointments to relieve stress."

Keeping communication open and being prepared for them to NOT be up for everything you suggest is also key.

Don't take it personally if a patient wants to spend a little time on their own.

Sophie says: "I so value those friends who just come over or send me a text- just give me the biggest hug and make sure I'm okay when I don't want to cry in front of the kids"

And Mary, who's in her 70s and lost her husband some time ago, says she doesn't want to be defined by her illness: "I appreciate people treating me as normal and not as if I'm about to die," she says.

"One friend, with my permission, has shared my diagnosis with our circle of friends so I don't have to keep repeating it."

Adila, who has a large family, says she's thankful to her sister who encourages her to do as much as possible, but is there for her when she needs help.

"I love it when my grandchildren keep me posted on life outside my cancer world," she says.

An estimated 61,000 people in the UK are currently living with secondary breast cancer, also known as stage IV or advanced breast cancer.

This little-known form of the disease – a cancer that has spread beyond the breast to other parts of the body – claims 1000 lives each month in the UK, with an average of 31 deaths daily.

Click here to access the study, published in the scientific journal Supportive Care in Cancer.

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