The NHS must improve its understanding of, and provision for, the long term consequences of cancer if it is to cope with a rising number of patients, writes Jane Maher

Woman looking in to microscope

Almost four in 10 people will survive cancer by 2020 due to new research

By 2020, almost half the population will face a cancer diagnosis in their lifetime, yet almost four in 10 of those will not die from the disease.

However, cancer treatment can take its toll. While many patients recover well, others will not return to their previous level of health, despite otherwise successful treatment. A new report from cancer support charity Macmillan shows that about a quarter of people living with cancer − equivalent to more than 500,000 people in the UK − face poor health or disability after cancer treatment.

‘Patients often do not report the full scale of their problems and their needs are often not fully met’

While the precise impact this has on the NHS is not yet known, it is clear there is a substantial level of need and use of resources. Our report estimates that about 90,000 people are currently living with gastrointestinal problems that include faecal incontinence, chronic diarrhoea and bleeding. Several hundred have complex needs requiring specialist services, such as nerve damage from obsolete forms of radiotherapy for breast cancer.

It is not just a medical issue: as the pilot Quality of Life of Cancer Survivors in England survey shows, the impact of consequences of cancer and its treatment can affect quality of life by limiting day to day activity and affecting relationships. Nor is the issue restricted to older patients in poor health, as a high proportion of those who were treated for cancer as children or young adults can face the long term consequences for the rest of their adult life.

Although most patients affected by these issues will be using a range of NHS resources, they often do not report the full scale of their problems and their needs are often not fully met. This can result in a range of quality of life issues such as a reduced ability to work, socialise and generally take part in the world outside the home. And, as you would expect, patients who have poor health after the end of their initial cancer treatment are on average more costly to treat than those who do not.

Commissioning culture shift

Macmillan’s Routes from Diagnosis programme is exploring the use of routinely collected activity data to highlight the additional costs for cancer management of pre-morbid and treatment related conditions.

Early data, based on 1,000 colorectal cancer patients diagnosed in North Trent between 2006 and 2008, and followed up until 2011, shows the average inpatient cost of patients who have survived at least five years and have comorbidities is £5,000 per patient, compared with £2,000 per patient for those without comorbidities. Some of these costs can be linked to treatment related problems rather than pre-treatment conditions, illustrating the potential for cost savings.

To better manage the consequences of cancer and its treatment we need a culture shift in commissioning, helped by policy and financial incentives, to encourage the provision of long term care and support including supporting people to self-manage.

As part of the National Cancer Survivorship Initiative (NCSI), Macmillan has worked with the Department of Health to develop a defined “recovery package” for commissioners in England to consider. It could equally be adapted for use by colleagues in the other UK nations. The package comprises four main elements:

  • Effective, timely conversations with patients in hospital to identify their needs. These assessments should take place both before and at the end of initial treatment and if new problems are identified. Research suggests these conversations are more effective if patients complete simple pre-consultation self-assessment questionnaires, such as a holistic needs assessment. The consultation should result in a written care plan.
  • A written summary of treatment from the hospital team (treatment summary), using a structured format and designed to help GPs support patients after their treatment ends.
  • A discussion with patients about their needs and concerns by the patient’s general practice after the treatment summary has been received, to enable the GP and patient to discuss the potential long term effects of the patient’s cancer and treatment and possible impact on the patient’s health. GPs can also use this as an opportunity to check the patient’s treatment is correctly coded in their health record.
  • A post-treatment multidisciplinary education event for patients and their carers to help them understand cancer and its potential long term consequences and prepare for supported self-management. The health and wellbeing clinic should cover what signs and symptoms they need to look out for, what resources and services are available to help them and what to do if they are worried, plus advice on healthy lifestyles, including physical activity, work and financial issues.

There is a range of support materials for commissioners and service providers available on the NCSI website, including an example holistic needs assessment tool and a treatment summary template and user guide. The elements of the package have performed well in evaluations, and Macmillan will deliver further evidence on costs and outcomes. If patients and their GPs are better supported via the recovery package, we would expect to see a reduction in the use of unplanned care services for these issues, as well as improved health and wellbeing.

Minimising risk

As important as it is, the recovery package alone will not be enough to fully meet patients’ needs or maximise cost savings. Other changes are also needed.  We can minimise the risk of long term consequences developing in the first place through better imaging, minimally invasive surgery, targeted radiotherapy and new drugs. We can ensure patients are given good quality information about long term effects and simple self-management strategies, and we can become more skilled in identifying problems emerging months or years after treatment.

‘We already know that the NHS must improve what data is collected and how it is recorded’

To help identify patients experiencing problems, the NCSI is proposing that clinicians and nurses treating people with cancer should systematically use tailored patient reported outcome measures (PROMS) and “power” questions (specific questions shown to elicit particularly useful insight, such as: “Are you woken at night to defecate?”). These tools should be used at several points before, during and after treatment to help identify when problems emerge.

Some commissioners are already testing a commissioning for quality and innovation payment linked to the use of PROMS during and after treatment. GP and practice nurse education and training will also help with identifying problems earlier and improve the signposting of patients to helpful resources to support self-management.

Commissioners must also consider the need for specialist services. Macmillan is working with specialist societies such as the British Society of Gastroenterology to develop evidence based care pathways for treatment related problems. About 50 consultants are now involved in delivering services across the UK for bowel problems after cancer treatment.

Specialist network

The NCSI has also tested service models for uncommon, complex long term consequences for use by specialist commissioners. The model features regional centres for assessment, brief intervention and support for self-management, and access to more complex interventions for those who need it.

A pilot service for women with the nerve damage referred to earlier (radiation induced brachial plexopathy) demonstrated it was possible for patients to self-assess their needs and self-refer. Most were treated with a brief intervention with a minority referred for specialist multidisciplinary rehabilitation. This service was nationally commissioned in April 2012 as the breast radiotherapy injury rehabilitation service and is now available at three hospital trusts in England.

‘If we do not improve our understanding and provision, the health and social care system will struggle to cope with rising numbers’

We also need a network of similar supra-regional specialist centres to deliver or coordinate care for adults with complex problems as a result of childhood cancer, and patients with severe, complex pelvic problems. The Royal Marsden Hospital Gastrointestinal and Nutrition Service is a leading example of the latter; results from its large randomised controlled trial (ORBIT) show that systematic interventions can ameliorate radiotherapy induced gastrointestinal symptoms.

Commissioners need to know the number of patients who would potentially need any new service. However, many will currently struggle to generate a precise answer for this as exactly what treatments patients have received and whether they have any consequences of treatment is not consistently recorded in primary care electronic records. Macmillan will be looking into more detailed breakdowns as part of our Cancer Population Evidence Programme, but we already know that the NHS must improve what data is collected and how it is recorded.

If current trends continue, in just a few years’ time almost half of us could face the long term effects of cancer and its treatment in our lifetimes. If we do not improve our understanding of, and provision, for these long term consequences, the health and social care system will struggle to cope with these rising numbers. We will also fail to support people in the local community at a time when they are particularly vulnerable and miss a vital opportunity to help them live well.

Professor Jane Maher is chief medical officer at Macmillan Cancer Support