Beyond cancer

Given that cancer is no longer a death sentence, we need to make sure that people who are living with, or beyond, cancer are able to lead full lives in which their condition is effectively managed, says Ciaran Devine

New figures from the National Cancer Intelligence Network tell us that people with a diagnosis of cancer are living longer. This is undoubtedly good news. There are currently two million people living with a cancer diagnosis. This figure is increasing at a rate of 3% per year so that by 2030, if the current rate continues, the number will have doubled to four million people. As survival rates change, so must the way we support people affected by cancer.

At the moment we have a hospital-based follow up surveillance system after treatment but this isn’t meeting the needs of cancer survivors. According to the Department of Health, half of all people with long term conditions, including cancer, were not aware of treatment options and did not have a clear plan to help them manage their condition better. This is in contrast to what people want. A recent Macmillan poll of the general public found that 89 per cent would expect a personalised care plan.

What happens now is that when treatment ends so does coordinated support, leaving many survivors feeling abandoned. And the current surveillance system is not the best way to detect recurrence. For example, in a study of breast cancer patients in Cornwall, only 15% of recurrences were detected at routine follow up whilst 48% were first noticed by patients themselves.

The current system is also costly. On average, each cancer outpatient visit costs £106. Emergency or unplanned admissions are a significant pressure in the NHS – where patients do not recognise symptoms needing urgent treatment hospitalisation may result at a cost of £340 a night. In contrast, preventative visits to an appropriately trained surgery-based nurse would cost significantly less . A more efficient aftercare system would help patients themselves to detect problems earlier at a much lower cost and not make people wait until their next scheduled appointment.

Not only is the current system not always the best way to meet its primary purpose of detection of recurrence; it doesn’t address the many other problems cancer survivors experience.

Often there is potential for longer-term impacts on physical health. In some cases treatments are associated with side effects which can develop years after treatment. In other cases, health risks such as heart disease can be increased. This means that approximately one in five people living after treatment for cancer will develop significant long-term emotional, psychological and physical problems that seriously affect their quality of life. Again, these issues are often not addressed.

The reality is that cancer survivors need help getting their life back on track. People affected by cancer need to make sure they are able to manage financially and will want to get back to work.

Cancer specific financial support and advice leading to increased income can be associated with improvements in levels of exhaustion and mental health issues. People using Macmillan funded advice services experience less stress, which in turn aids recovery.

This, too, provides savings. Research has found that the average cost to the NHS of ‘difficult to solve’ debt problems that led to physical or stress-related ill-health was around £50 (£20 per debt problem in general). Financial support and advice results in people with long-term conditions such as cancer using the health service less. This includes fewer visits to the GP, fewer prescriptions, fewer new drugs prescribed and fewer visits to A&E.

Many people can’t wait to get back to work as to them it represents a major step on the road back to a normal life and is a sign that they have overcome cancer. For people to successfully return to work, they need relevant information and advice.

Many people with cancer return to work without any information or advice – fewer than 50% of patients are advised by cancer doctors about the impact of treatment on their work. The kinds of information that can be useful for people with cancer include, how their ability to work might be affected, how to manage their condition, when they might expect to be ready to return to work and what rights they have under the Disability Discrimination Act and the forthcoming Equality Act.

But it’s not just information and advice that’s needed. We also want to see vocational rehabilitation offered to every cancer survivor who needs it. Examples of the services this can include are physiotherapy, counselling, retraining, employee advocacy and workplace assessments or adjustments.

All this adds up to the need for a far more comprehensive aftercare system. The National Cancer Survivorship Initiative, a joint venture with Macmillan and the Department of Health, is leading the way in looking at what this new system needs to offer.

We believe any new system should offer a post-treatment assessment looking at all the potential long-term consequences of the cancer and its treatment and how this may impact upon a person’s life.

Under Macmillan’s suggested new model, everyone reaching the end of treatment would be offered an assessment by an appropriately trained professional such as a specialist doctor or nurse to identify the patient’s needs and any risk of future problems or disability. Under such a regime, care planning for the majority would take the form of supported self-care with quick access back into the system if and when needed.

This has the potential of preventing complications, slowing down deterioration and avoiding further complications. Managed care is about adopting a healthy lifestyle which prevents as far as possible escalation of any ongoing problems and occurrence of any future problems. It is also about detecting reoccurrence or problems caused by the previous cancer as early as possible rather than waiting for the next scheduled appointment.

If cancer survivors are given effective education, support, intervention and management then this could significantly improve their health and well being. Holistic assessment and care planning would also lead to improved patient experience and save the NHS money in the long term.

For more information on cancer survivorship, visit: www.macmillan.org.uk/survivorship.

Ciaran Devine is c hief executive, Macmillan