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Why cancer aftercare cannot be an afterthought


Every day in Northern Ireland, 30 people find out that they have cancer. More and more of them are surviving for longer but, for many people affected by cancer, getting back into their normal routine following treatment can be difficult.

The physical and enduring side-effects of cancer and its treatment can range from general fatigue to chronic pain, osteoporosis and heart failure. Then there are financial difficulties, resulting from taking time off work and potential long-term unemployment. Finally, there’s the fear of the cancer coming back.

The Health and Social Care Board, the Public Health Agency and Northern Ireland Cancer Network (NICaN) joined forces with Macmillan Cancer Support to remodel the traditional ‘one size fits all’ approach to aftercare following treatment, based around routine follow up appointments, and instead provide individually tailored patient care.

Dr Miriam McCarthy, consultant at the Public Health Agency, says:

“We have listened to patients and cancer follow up is changing in response to their needs. The health service aims to ensure that everyone has the best follow up care.

“For some people, the good news is that after their cancer treatment they will not need to attend hospital, unless there is a particular reason to do so.”

As part of the new ‘recovery package’, patients have access to a Clinical Nurse Specialist (CNS), who discusses their needs in the form of a written ‘care plan’, which they can take away with them. Patients are shown the signs and symptoms to look out for, told who to contact, should any problem arise. If necessary, a hospital appointment is scheduled without delay.

An additional treatment record is provided for patients and their GPs to help understand their treatment and any possible longer term consequences and complications which could arise.

Finally, people are invited to go along to a ‘health and wellbeing’ event, where they hear about all the practical things they can do to keep well and find out about local support services on their doorstep.

Macmillan has invested more than £1 million in the Transforming Cancer Follow Up programme in Northern Ireland. The leading cancer charity’s General Manager in Northern Ireland, Heather Monteverde, says cancer care is undergoing radical changes:

“With the number of people living with cancer increasing each year, the scale of the challenge facing us cannot be underestimated.

“Without a complete transformation of the way people are supported after their treatment ends, there is no way patients will get the aftercare they so desperately need, whether that’s practical help at home, financial advice, or even emotional support.”

Results to date have been encouraging. The Transforming Cancer Follow Up Programme has been implemented by Northern Ireland’s five Health and Social Care Trusts as the new model for breast cancer follow up and progress is being made in remodelling prostate and colorectal cancer aftercare with a view to including other tumour groups.

According to an evaluation report, completed by advisors PwC in February 2015, 58% of newly diagnosed breast cancer patients are now taking up self-directed aftercare.

Patient confidence in the new system has been demonstrated by 12% of patients using the new rapid access system for the follow-up breast pathway to highlight their concerns in a timely manner. The overall impact of the programme has resulted in a 28% fall in breast surgical review waiting lists, allowing clinical teams to spend more time with patients with more complex needs.

Dean Sullivan, Director of Commissioning, Health and Social Care Board is delighted with the results; “The Evaluation provides sound evidence that the new system is proving a success for cancer survivors. It is a great example of how we can adapt services so they become more patient centred – this benefits the individual and also frees up much needed resources for other health and social care services.”

The NI Transforming Cancer Follow-up team also gained recognition at the recent UK Nursing Standard Awards when they picked up a prestigious award in cancer nursing at a special ceremony in London. Held annually, the Nursing Standard Awards identify exceptional nursing professionals, who have improved the quality of patient care through innovation and clinical excellence.