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Offering the right post-treatment support to cancer patients - and at the right time

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Routine follow-up is a long-established approach in healthcare and nursing

The idea of a patient coming back in three months’ time, six months’ time, a year’s time is deeply embedded into processes in all specialties. Yet the system is not without drawbacks: potential wasted time if a patient presents with no problems, and missed opportunities for early intervention if a symptom occurs between appointments.

Those issues are perhaps particularly pertinent in follow-up care for cancer patients. There are now two and a half million people in the UK who are living with or beyond the disease, a number which is only set to grow. Developing post-treatment care which is efficient and effective for both healthcare professionals and patients is a key challenge.

At University Hospital Southampton Foundation Trust, the challenge has been addressed by the introduction of patient-triggered follow-up. For certain patients in certain tumour groups, there are no longer routine post-treatment appointments. Instead, they are able to speedily gain support as, when, and if troublesome symptoms or other worries occur.

“It’s not about stopping patients coming back to clinic,” emphasises Lisa Young, Macmillan gynaeoncology clinical nurse specialist at the trust. “It’s enabling them to come back to clinic when it’s right for them, not just because of a routine schedule that’s been around for many years.

“We’ve seen people who’ve come in on a Friday for a routinely scheduled appointment and everything’s been fine, and a week later they’ve got a symptom. And sometimes they say: ‘Well, because I was seen last Friday, everything must be OK.’ Patient-triggered follow-up means we see you when it’s appropriate for you, rather than delaying appointments or getting false reassurance from a recent follow-up appointment.

“It’s about making patients feel confident that if they do have a problem, they can get seen quickly if it’s needed.”

Clearly the system needs careful planning and administration to set up, and here a recently-introduced role has proved invaluable. Marion Rood is the trust’s Macmillan support worker for breast and gynaecological cancers, a post created specifically to meet the needs of patients who have finished their treatments.

“At Southampton, it’s a role to support patients as they go into patient-triggered follow-up, and also with the Macmillan recovery package. So I offer lifestyle support, and run health and wellbeing workshops for patients,” explains Ms Rood.

“If a patient needs signposting, or if they’ve got general worries around lifestyle, they can ring me. And if their concerns are medical, I pass them onto my clinical nurse specialist [CNS] colleagues. I like to think the two roles work together well.”

Ms Young is in firm agreement. “I feel very much that we would not have moved forward with patient-triggered follow-up without someone in Marion’s role. I think we all feel that we don’t see Marion as additional – we see her as part of our team.”

Macmillan support worker roles are now in place up and down the country. While the specifics vary, the overall aim remains the same: offering the right post-treatment support to patients at the right time, and supporting them to self-manage.

“As is usual for these kind of initiatives, the impetus came from what we heard from people affected by cancer,” explains Jacqueline Goodchild, workforce programme lead at Macmillan Cancer Support. “People were describing the feeling of falling off a cliff once they finished treatment. It was a wave goodbye and we’ll see you in three months, six months and so on.

“When we established the support worker role, we realised the majority of people with non-complex needs could be supported to self-manage [post-treatment]. It’s a role which is really dedicated to supporting self-management. The emphasis is very much on working with the individual; thinking about what their concerns and needs are, what they can do for themselves, what they might need help for, who they might need to be signposted or referred to.”

In that way, support workers are freeing up nursing colleagues’ time. “Some of the examples we’ve had from different parts of the country are showing between 25 and 40 per cent of clinicians’ time is being freed up,” says Ms Goodchild.

It is a contention echoed by Ms Young. “Marion does a lot of the signposting, and it enables us as nurse specialists to do the more complicated care, which is what a nurse specialist is there for,” she says.

Patients are appreciative of the support worker too: Macmillan research shows an average 9.7 out of 10 satisfaction rating. “It’s allowing people to move on with their lives with the confidence they know who to contact and when,” suggests Ms Young.

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