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Partnership not paternalism

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After seeing patient-led care in the US, Jenny Deagle is supporting cancer survivors to take back control of their lives Macmillan community nurse Jenny Deagle had a “pivotal” experience seeing patients manage their care when working abroad.

In 2000, she was awarded a Florence Nightingale travel scholarship, which gives nurses the opportunity to study practice elsewhere in the UK or overseas.

Ms Deagle used this to travel to Minneapolis and observe healthcare in the US. The trip changed how she views nursing care.

While observing the Minneapolis programme, which featured patient-led care in private, public and cooperative health facilities, Ms Deagle says she realised that putting patients in control made treatment planning more effective.

She watched patients administer their own IV antibiotics and helped mentor them to support themselves by communicating their symptoms.

“The programme was very pivotal and showed me how patients could have more control and autonomy,” she says. “It helped change my paternalistic outlook to one of working in partnership with people.”

Now, Ms Deagle works on the Macmillan and the Department of Health’s One to One pilot programme at Southampton University Hospital. The two-year project has 16 pilot sites in the UK and seeks to support patients after their initial therapy.

Patients who have completed their initial chemotherapy, radiotherapy and surgery are reviewed in outpatients and transferred to the One to One project. Each patient has a designated support worker and may contact them at any time for advice or be seen in clinic. In the last nine months, this has released around 700 patients from having to attend routine follow-up outpatient clinics.

Ms Deagle is based in the community. She supports patients with metastatic disease and comorbidites, who are dealing with the emotional, physiological and financial consequences of cancer. She also advises on symptom control - people may live for many years with debilitating side-effects of therapy after the cancer is gone.

“Its much more about teaching people to have control over their own life and know where to go for help when they need it,” she says.

“In the old days, if you had breast cancer, you would go for treatment and be left in limbo at the end. Now, people are encouraged to take control of their symptoms and access hospital systems when they need them, as opposed to when the system deems it convenient.”

Ms Deagle says her career as a nurse has been shaped by her persistence to move and change things in her field.

With a 30-year career in acute nursing behind her, she says one of the most formative of her experiences was opening nurse-led assessment centres in the Southampton area.

“I was always keen to develop new ways of doing things, of making a difference,” she says. “I have moved jobs every six to nine years to gain new experiences and develop my learning.”

She says she is fortunate to be in the UK, as it is leading the world in developing the nurse prescribing and nurse consultant roles.

“I think being able to develop the nurse-led clinics and receive the education to do so shows that British nursing plays a pivotal role in expanding healthcare. UK nursing is a very fortunate place to be.”

She continues to learn. “I started life as an SRN, then studied for my diploma, followed by a degree in nursing and will commence an MSc in cancer care this autumn,” she says.

Because of the long-term consequences of cancer and its treatment, it is important that support for patients continues.

“I’ve been amazed at how people want to get off this helter skelter, roller coaster ride,” she says. “If you’re on a roller coaster, you want someone with you when you’re going through the water, but when you’re up in the sunlight, you just want to enjoy it.”

As Ms Deagle continues her work at Macmillan, she says she’s glad to be along for the ride.

Hilary Weaver

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