Written evidence from Macmillan Cancer Support (LTC 52)

Executive Summary

• Cancer is a long-term condition for those who are dealing with long-term physical and emotional effects from cancer and its treatment. As such, it should be included with the scope of the Inquiry.

• The NHS and social care system in England must have a greater focus on the long-term consequences of having cancer. In particular, NHS England must ensure that the new arrangements for commissioning are driving the redesign of aftercare to support survivorship. This includes taking forward the recent recommendations of the National Cancer Survivorship Initiative.

• Our evidence suggests that people with long-term conditions can manage their condition appropriately when they have the right opportunities, resources and support. They need information, help with shared decision making, good care coordination, support with self management, and rapid access to clinical expertise if required. These requirements are also common to people affected by cancer.

• People’s wellbeing will be greater if they get the personalised support that they need. An example of this is the “Recovery Package” which promotes: effective assessment and care planning, good communication through a “Treatment Summary” and offers education and support events (Health and Wellbeing Clinics) which inform patients about how to take care of themselves, what to look out for and who to contact if needed.

• Effective service provision for people with long-term conditions should include return to work support. This includes ensuring that the NHS is better incentivised to promote work as a positive health outcome for people with long-term conditions, and action to address the gap in vocational rehabilitation provision. We would also like health and wellbeing boards and joint strategic needs assessments to highlight and take action to address work support needs.

1. Introduction

1.1     Macmillan welcomes the opportunity to respond to the Health Select Committee’s inquiry on the management of long-term conditions.

1.2     Cancer is a debilitating disease and the effects of cancer can be felt a long time after treatment has ended. The National Cancer Survivorship Initiative (NCSI) is a partnership between the Department of Health and Macmillan Cancer Support, supported by NHS Improvement, which originated from the Cancer Reform Strategy (2007). As a result of work of the NCSI, the long-term consequences of cancer and its treatment are now better understood. In addition, new approaches to meeting the needs of cancer survivors have been tested.

1.3     The NCSI’s work provides a strong evidence base for cancer to be considered as a long-term condition. As such, we were surprised that cancer was not included in the definition of long-term conditions set out by the Inquiry (although we note that the Committee cites a Department of Health (DH) definition).

1.4     Our response to the Inquiry therefore begins with our rationale as to why cancer should be treated as a long-term condition. The rest of our response focuses on the importance of supporting people with long-term conditions during and after treatment has ended, and the importance of supporting people back into work.

2. Cancer as a long-term condition

2.1    Cancer is a long-term condition for those who are dealing with long-term physical and emotional effects from cancer and its treatment. We strongly encourage the Committee to consider cancer in its review of the definition of long-term conditions.

2.2    Around 1.8 million people in England are currently living with cancer. This number is increasing by over 3% a year and the total figure will rise to over 3 million by 2030[1]. One reason this figure is rising is that many more people with cancer are surviving, thanks to improved screening, earlier diagnosis and new treatments. Whilst it is extremely positive that more people with cancer are surviving, for many, the end of treatment is the start of poor physical or emotional health that can continue for years.

2.3    It is estimated that around 20–25% of people treated for cancer are currently experiencing a consequence of cancer and its treatment which has an adverse impact on the quality of their life.[2] The physical problems people with cancer develop as a consequence of cancer treatment vary according to whether they have received radiotherapy, chemotherapy or have undergone surgery. Some are worst in the first few months or years after treatment and may improve over time. However, other problems will not appear for years. In addition to these physical problems, emotional problems such as depression are common.

2.4    Many cancer survivors live with other long-term conditions, either as independent co-morbidities, or caused by their cancer or treatment. For example, in the long term, people who have had chemotherapy may develop serious conditions such as osteoporosis, heart disease and even second malignancies, such as leukaemia.

3. Living with and beyond cancer - survivorship

3.1    The growing number of cancer survivors brings additional challenges in terms of understanding needs and how NHS and social care services can best support them.

3.2    In England, the NCSI was launched in 2007, at a time when most of the focus in terms of improving cancer services was on the diagnosis and treatment of cancer. In contrast, one of the main aims of the NCSI was to develop services to support and enable cancer survivors to live as healthy and as good a quality of life for as long as possible.

3.3    Before the NCSI, there had been very little research on cancer survivors. However, we now know more about the needs of cancer survivors than ever before. In particular, we now have cancer survivorship figures at a population level, at a patient level and at a health service level. Data at the population level is vital to help with planning the levels of services needed at any point in the cancer care pathway.

3.4    Evidence shows that many of these cancer survivors have unmet needs, particularly at the end of treatment, whilst others are struggling with consequences of treatment that could be either avoided or managed.

Improving outcomes for cancer survivors

3.5    High quality cancer survivorship can improve outcomes in all domains of the NHS Outcomes Framework. However, it can also contribute to improved outcomes within the Public Health Outcomes Framework – for example, reducing people’s risk factors for developing other conditions – and the Social Care Outcomes Framework – for example, through promoting independence.

3.6    The NCSI recently published Living with and beyond cancer: taking actions to improve outcomes[3]. This set out a framework for survivorship outlining the action needed at five key stages of the pathway:

-                      Information and support from the point of diagnosis

-                      Promoting recovery

-                      Sustaining recovery

-                      Managing the consequences of treatment

-                      Supporting people with active and advanced disease

3.7    The document sets out what has been learnt on survivorship, including interventions to meet needs that have been tested and ready to spread across England.

3.8    Underpinning the recommendations in the report is the need to increase understanding and promote a cultural shift in professionals towards shared decision making and supporting patient self management.

3.9    Macmillan encourages NHS England to take forward the recommendations outlined in this report – aimed at commissioners and providers - to ensure that outcomes are improved for cancer survivors. It is vital that the new commissioning arrangements drive forward the redesign of aftercare to support survivorship.

Information and support from the point of diagnosis

3.10 All patients and their carers with a long-term condition, regardless of its complexity, should be offered the opportunity and relevant information to help them develop a personalised self-management plan with a trained professional or peer, which is integrated into the formal care planning process.

3.11 Early cancer rehabilitation is also important: it can prevent avoidable ill health and is more effective when provided early to avoid conditions becoming more complex and costly to treat later on.

3.12 People with long-term conditions, including cancer, should also be offered support in considering work and education options at an early stage. This is discussed further in Section 4.

Promoting recovery

3.13 People’s health, wellbeing and overall quality of life will be greater if they get the personalised support that they need.

3.14 The case for the “Recovery Package” is set out in detail in the NCSI report. The Recovery Package promotes: effective assessment and care planning, good communication through a “Treatment Summary” and offers education and support events (Health and Wellbeing Clinics) which inform patients about how to take care of themselves, what to look out for and who to contact if needed. These components are similar across long-term conditions.

3.15 Providing support and education to facilitate effective self-management where desired can have a number of benefits for the individual and the system. Individuals undergoing structured self-management programmes report improved health literacy and health behaviours, increased confidence in their ability to navigate the health system, better physical functioning and a greater understanding of the appropriate services available.

Managing the consequences of treatment

3.16 Treatment for cancer, although vastly improving and expertly administered, can still have consequences that impact hugely on the ability of people to live meaningful lives. The recent 2012 DH Patient Reported Outcomes Measures (PROMs) survey highlighted some of these issues. For example, 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence, and one in five colorectal survivors reported difficulty in bowel control.[4]

3.17 Failure to manage the consequences of treatment can have a significant impact on patients and the system. Access to support for common health related problems caused by treatment should be routinely available and information should be given to people. Some services for intermediate or rare types of consequences may need to be commissioned through specialised commissioning. In all cases, some key principles should be followed: preventing or minimising consequences through healthier lifestyle choices and better treatment, informing patients of potential consequences, identifying patients at potential risk, assessing people through holistic needs assessments and supporting people through local care pathways.

Sustaining recovery

3.18 Physical activity has been proven to be impactful on the management of long- term conditions associated with cancer and its treatment, as well as reducing the possibility of recurrence of some cancers. We recommend that the DH ‘Let’s get Moving’ pathway is routinely incorporated within cancer care pathways, and that ‘exercise on referral’ schemes criteria explicitly include cancer.

Rehabilitation

3.19 The importance of rehabilitation to the recovery of people with long-term conditions is increasingly well understood and supports the NCSI’s work.

3.20 As more and more people survive and now live with cancer, early intervention and continuing access to rehabilitation can minimise the often predictable effects of lengthy treatment and the level of disability resulting from the disease itself. Closer integration between health and social care is also required to deliver excellent care and rehabilitation to people living with complex health needs.

3.21 Without effective rehabilitation, at all stages of the care pathway, the benefit of treatment will be limited and the health outcomes will be diminished.

3.22 Rehabilitation programmes are applicable across long-term conditions, and it is important that they include vocational rehabilitation support (which is covered in more detail in section 4). The National Cancer Action Team recently published recommendations on rehabilitation, including work, for commissioners and providers.[5]

4. Difficulties staying in or returning to work

4.1    Cancer, like other long-term conditions, can affect many aspects of a person’s life, such as their ability to work. In the Mandate to NHS England, the Government made it clear that it expects progress in supporting people with long-term conditions, including cancer survivors, and in particular for them to remain in, or find work.

4.2    There are 600,000 people of working age living with cancer in England[6]. Around 100,000 new cases of cancer are diagnosed in people of working age each year in England[7]. This means that, on average, there will be around 550 patients per provider per year for whom returning to work will be a consideration.

4.3    Work is an important part of helping people get back to normality after a cancer diagnosis and treatment. It has many other benefits, such as improving confidence and self-esteem, and it contributes to financial independence and material comfort. There is strong evidence to suggest that for people who experience ill health or disability, remaining in or returning to work can actually help promote recovery and rehabilitation, and lead to better quality of life and health outcomes.[8]

4.4    Supporting people with cancer, and other long-term conditions, is also good for the economy. In 2008, Policy Exchange estimated that £5.3 billion in productivity was lost that year as a result of cancer survivors not returning to work[9]. As the number of people living with cancer is set to double over the next 20 years, this loss to the economy is likely to increase.

4.5    Research shows that the majority of people who are working when they are diagnosed with cancer want to return to work when they are ready and able to, or they need to for financial reasons[10]. However, this can be difficult because people struggle with the consequences of cancer, such as fatigue and depression. Research also shows that people who have had a cancer diagnosis are 1.4 times more likely to be unemployed than those who have not.[11]

4.6    The main barriers that prevent people living with cancer remaining in or returning to work are threefold: a lack of support from health professionals on working during cancer treatment or returning to work after treatment; a lack of support from employers; and a lack of specialist vocational rehabilitation support.

Incentivising the NHS to promote work as a positive health outcome

4.7    Many people with cancer who are considering remaining at work, returning to their job or leaving it are given little or no information and advice from health professionals about the impact cancer can have on their working lives. Statistically, over half of people with cancer (60%) who were in work at the point of diagnosis were not informed by a health professional about the impact their cancer diagnosis might have on their working lives[12].

4.8    It is essential that health professionals understand that work can help improve an individual’s health and well-being, and that they have an important role in helping people with long-term conditions, including cancer, make informed decisions about their working lives. Macmillan recommends that health professionals start routinely talking to patients about the impact of cancer treatment on their ability to work – in particular, raising the issue of work early in the patient’s journey and signposting to further support where appropriate. The NCSI has produced guidance for health professionals on achieving positive health outcomes[13].

4.9    Macmillan wants the DH and NHS England to pay greater attention to the role the NHS could play in helping more people get back to work. 

4.10 It is also important that the health and social care systems work more effectively together. We would like health and wellbeing boards and joint strategic needs assessments to highlight and take action to address work support needs.

Specialist vocational rehabilitation support

4.11 Another key barrier is the lack of specialist vocational rehabilitation services for people with complex problems who should be referred to a vocational rehabilitation service for specialist support.

4.12 However, there is a severe lack of appropriate vocational rehabilitation services in the UK for people with long-term conditions, including cancer. Macmillan recently published a report Making the shift: providing specialist work support to people with cancer on the need to fill this gap in provision[14].

4.13 A large government-funded review of vocational rehabilitation in the UK found that structured vocational rehabilitation interventions can be both beneficial to individuals and cost effective[15]. However, since this review there has been little progress at a national level. In particular there is still a lack of capacity to deliver effective vocational rehabilitation for people with long-term conditions.

4.14 Currently, NHS rehabilitation services, such as occupational therapists, tend to focus on hospital discharge only and lack the capacity to provide vocational rehabilitation. Government back-to-work programmes are more focused on supporting people on long-term benefits than people on sickness absence looking to return to work. Finally, occupational health (OH) service and private healthcare providers usually only provide vocational rehabilitation services to people working in large organisations and not all OH professionals are trained to provide advice on cancer.

4.15 To address the lack of specialist vocational rehabilitation services in the UK, Macmillan, as part of the NCSI, piloted a new model of vocational rehabilitation services for people with cancer. The evaluation of the pilots demonstrates that timely vocational rehabilitation interventions result in better work and health outcomes for people with cancer, and that they can be cost effective.[16] Our work in this area also demonstrates that effective vocational rehabilitation for people with long-term conditions, including cancer, requires a combination of healthcare and workplace interventions.

4.16 Our report makes a number of recommendations to Governments across the UK. In particular, we have called on Governments to take responsibility for improving access to and the availability of vocational rehabilitation, and coordinating health and workplace support. We would like the Government and NHS England to provide more encouragement to NHS commissioners to invest in vocational rehabilitation support for people with long-term conditions, including cancer.

May 2013