Improving quality of life at all stages of the cancer journey

The Macmillan Move More programme in action

More people are being diagnosed with cancer than ever before – and living long beyond that diagnosis. But, while new treatments are extending lives, some people have debilitating symptoms, with depression, anxiety, breathlessness, sexual problems and fatigue among the long-term effects.

Mary discovered she had pancreatic cancer in 2017. She underwent surgery, which was successful in removing the cancer. However, she suffered anxiety that the disease might return, heightened during the coronavirus pandemic. “I was very lost when I got diagnosed and didn’t know where to turn, especially after my surgery,” she said.

We know cancer impacts on people’s emotional and mental health

According to cancer psychiatrist, Dr Asanga Fernando from St George’s Hospital: “We know cancer impacts on people’s emotional and mental health, the treatments do as well, and the different stages of the disease’s progression. As patients are living longer with cancer, we need to think about what matters to them from a quality-of-life perspective.

“St George’s has funded one of the most integrated cancer psychological support services in the country in recent years – with psychiatry, psychology and counselling for patients as well as carers.”

Sometimes people can be so caught up in treatment that their diagnosis hasn’t really sunk in

Every cancer patient receives a review appointment with their GP within three months of diagnosis and a further one after nine to 12 months. According to Dr Maria Wallace, GP lead for cancer in Wandsworth, these reviews are an opportunity to talk to patients about their condition and the support they need.

“Sometimes people can be so caught up in treatment that their diagnosis hasn’t really sunk in. Then treatment slows down or stops, and people expect to pick up their lives where they left off. But they find that they need support to move on. We encourage GPs to refer people on to the borough’s social prescribing link workers.”

These include Hannah Jackson, the Macmillan community cancer link worker, based in Wandsworth. Her service is a two-year pilot from the borough’s social prescribing provider, not for profit organisation Enable leisure and culture in partnership with Macmillan Cancer Support.

Hannah sees people at all stages of their cancer journey, from diagnosis to the end of treatment and beyond. She also works with palliative care patients. Each person has an initial 60-minute meeting to talk through their non-medical concerns.

Around 250 people have been supported so far, including Mary, who said: “Hannah was so useful to speak to about how I was feeling and talked me through the services which could help. She referred me to Paul’s Cancer Support Centre, in Battersea, which provides me with therapy sessions. The emotional support Hannah has provided has helped so much and it means I don’t have to worry my family with how I am feeling all the time.”

People with cancer benefit from social prescribing so hugely

The most common issues Hannah encounters are mental health-related, such as anxiety, depression, and low mood – as well as feelings of isolation. But for many patients there are more practical concerns, like the financial impact of cancer. Others find they need help accessing care as deteriorating health or the impact of treatment means they struggle do undertake everyday tasks.

Says Hannah: “People with cancer benefit from social prescribing so hugely, especially at the end of treatment, which can be a lonely time when they’re feeling lost after they’ve been discharged from hospital.”

Physical activity brings real benefits and can help reduce some of the negative consequences of treatment. According to Dr Maria Wallace, “It has been shown that physical activity is good for reducing the risk of relapse and also improving quality of life and mood and helping with fatigue.”

It’s a way to meet other people going through cancer treatment

Macmillan Move More is a personalised physical activity programme, which supports people to be active at a level that is right for them.

Participants include Andrew, who was diagnosed with bowel cancer in 2016 and has had surgery, radiotherapy and two rounds of chemotherapy.  He continues to experience side effects from his treatment.

“When I first joined Move More my immediate ambition was to put on my socks and shoes without any pain, and I have achieved this,” he said. “The programme has helped me to gain more control of my abdominal muscles and I can now stand for longer periods of time, which helps me when I need to prepare a meal in the kitchen.”

Service lead, Marguerite Larvin, explained: “We help participants set goals based on their interests, whether they were previously active or it’s a completely new thing for them. We keep in regular contact to ensure we are up to date with their treatment and side effects, adjusting their goals and activity plan as needed.”

Move More runs face-to-face and online classes for building strength, fitness and confidence. Says Marguerite: “It’s a way to meet other people going through cancer treatment. It’s a social support group and a lot of friendships are made – because it’s cancer specific, a group that can empathise with what each other is going through.”

We see patients right from the beginning of their diagnosis pathway

At St George’s Hospital, oncologists and nurses have launched project to map out the help available and make it easier for health professionals to refer people to the right place, and for patients to find support themselves, via a website or app.

Dr Asanga Fernando was among those to pitch the idea to the hospital. Working with him, is breast cancer specialist, Dr Fiona Kyle. She explained: “We see patients right from the beginning of their diagnosis pathway until after their treatment and living with their disease. This is about increasing the connectivity and raising awareness of all these services and when and how to refer people to them.”

The project is co-designed with the people using it. Says Fiona: “We’re keen to make this accessible. To make sure that we are offering this service to all patients, not just to those who are more easily connected.

“Originally, we were calling this a survivorship project but that is not the term that that our patients want to use. They prefer living with and beyond cancer, and that completely makes sense.”

People living with cancer, who feel they could benefit from the services in this story should speak to their GP in Wandsworth.