Opinion: Reform needed to give cancer survivors tools to recover

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By Elspeth Atkinson – director for Scotland, Macmillan Cancer Support

“Treatment is the easy part of cancer. Living with it is the hard part. Treatment for me took six months, living with it is going to take 40 years. As soon as the treatment finishes, the NHS is finished with you and pushes you back into society. That’s when the real stress and pressure begins.”

These are the sentiments of Alan Clarke, a father of two young children who was diagnosed with head and neck cancer just over a year ago.

Alan is far from alone in feeling abandoned by a health system that took such good care of him when his cancer was being treated. People who have survived a cancer diagnosis frequently tell Macmillan that they feel isolated once they stop attending hospital, with little idea where to begin getting their lives back on track.

As a result of better treatment and screening is that the number of cancer survivors is growing. In less than 20 years, this number is set to double – from two million to an incredible four million people in the UK.

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The sheer size of this population brings into sharp focus the pressures that will be brought to bear upon the National Health Service. It is apparent then that cancer services will require an overhaul to cope with the ever increasing – and indeed changing – demands upon them.

At the moment, cancer patients who survive initial treatment attend regular hospital appointments to check that the cancer has not returned. However, this one-size-fits-all programme of clinical appointments does not meet the needs of individual patients, such as their emotional well-being or any practical support they might need to get their lives back on track.

There is also little evidence that this method is the best way to spot recurrences of cancer or the other possible long-term health consequences of cancer treatment.

We know that the needs of cancer survivors do not end when their hospital treatment finishes. That is why it is imperative that the NHS moves away from the current model of follow-up care which focuses solely on physical symptoms and illness to one that also considers health and well-being.

Reform of the health service is needed to ensure that patients are given the tools to understand their illness. If patients are equipped with the information to know when they need to see a health professional or when they may need a diagnostic test, then this will reduce the need for unnecessary follow-up appointments at hospital.

This development would free up resources which could be reinvested in new services that support people with cancer in the long run. It costs much less to provide a person with the skills and knowledge to self-manage their condition, and provide support if needed from a nurse in the community, than it does to make them travel to hospital for a follow-up appointment that doesn’t take into account all of their needs.

Effective rehabilitation services are also needed to support people back into work. As well as improving the quality of life of the cancer survivor, helping people who are able to go back into the workplace would also mean fewer people claiming benefits, more people paying taxes and employers retaining experienced staff.

To be efficient and effective, the health service must start treating cancer survivors as individuals. The key to this is providing every patient with a personalised assessment and post-treatment plan which should ensure that their emotional and practical, as well as their health needs are being met.

As part of this new plan, patients would also learn where support is available, whether they need a listening ear, more information about their diagnosis and the consequences of their treatment, help to get back to work, or assistance paying their mortgage or fuel bills.

We know that the challenge of creating cancer services to meet the needs of patients in the future is significant. That is why reform will require the support and collaboration of health and social care providers, the charity sector, and of course the Scottish Government.

Macmillan is highlighting this issue in a short film we are launching today called Change Cancer Care Today (see above.

The video, which features several patients, including Alan Clarke, calls on the next Scottish Government to commit to transforming the cancer care to meet the challenge of cancer as it is today.

We hope the video will inspire people to join our e-campaign and flag up the need to transform cancer care after treatment to candidates ahead of the Scottish Parliament elections in May. Certainly, with the population of cancer survivors growing at such a speedy rate, their collective voice is one that politicians cannot afford to ignore.

What we’re proposing makes sense. The cancer care system must move with the times to meet demands on it – the lives of cancer patients and their families, and the sustainability of the health service, depends on it.

To find out more or to join the e-campaign, visit macmillan.org.uk/scottishelection

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  • Sid the sceptic

    I fully agree with the article above .
    As someone living with cancer everything and more is so true.
    The treatment I have recieved for my cancer is first rate. The new findings and new ways of tackling cancer just keeping coming ,thankfully, this is where the NHS have been caught out, 20 years ago a cancer diagnosis meant almost certain death and as such rehab was not required .
    A national cancer rehab programme is a must !

    Apart from reasurring cancer patients it would cut down the number of appointments taken up simply to reassure patients. It would indeed save the hard pressed NHS budget a large amount of money.

    I would remind you that anyone leaving hospital after having a stroke or a cardiac episode without having a rehab programme in place would be seen as disgraceful and indeed unprofessional.
    Why are cancer patients not given the same chance?

  • Robbie

    So Sid-where do you think the limited NHS resources should go ?

    Research into prevention of cancer in the first place OR
    Treatment costs of new drugs/diagnostic equipment & techniques and specialist nursing OR
    Rehab programmes post treatment