Macmillan's nine outcomes

The things that matter most to people with cancer

Cancer in the UK 2014 examines the state of cancer in the UK in terms of the nine issues that people affected by cancer have told Macmillan matter most to them. These issues include clinical outcomes as well as the impact of cancer on the whole of a person’s life.

1. I was diagnosed early

Too many cancers are only diagnosed once they have reached an advanced stage, which greatly reduces people’s chance of survival.

To people with cancer this outcome means:

  • I was aware of the signs and symptoms of cancer and knew where to seek medical help.
  • My cancer was diagnosed at an early stage, giving me the best chance of survival.
  • I was diagnosed by the most appropriate health service for my cancer, ideally via a referral by my GP or a screening programme.
  • If my cancer comes back or spreads, this is also detected at an early stage and by the most appropriate health service.
  • I was seen as soon as necessary after my diagnosis by a hospital doctor.
  • My diagnosis was communicated to me clearly and sensitively.

What Macmillan says needs to be done

Better referrals: NHS leaders must tackle regional variations in the clinical pathways used to diagnose people with cancer, and GP practices should use the best available clinical decision support tools to help diagnose people earlier.
  
Better data: Cancer registries and hospitals must ensure stage at diagnosis is recorded for every person with cancer in the UK, and the NHS needs to use this data to improve performance.
  
Cancer leads: All commissioning groups and health boards should have dedicated cancer leads.

Sonia in the garden

2. I understand so I make good decisions

Many people living with cancer in the UK do not receive the information and support they need to understand what is happening to them and so cannot make informed decisions about their care.

To people with cancer this outcome means:

  • I received the information and support I needed to understand the type of cancer I have.
  • I understand my treatment options, the potential consequences of treatment, and any medical procedures that I have had and am going to have.
  • I am supported to make decisions about my medical care and treatment.
  • I am informed about the wider impacts of cancer on my life and the sources of support available to me.
  • I am supported to make decisions about the non-medical aspects of my cancer and its impact.

What Macmillan says needs to be done

Better information: All people affected by cancer should be offered high-quality, personalised information about the condition and their support and treatment options, including the short-term and long-term consequences of treatment.
  
More local services: Local health and social care leaders should ensure that people affected by cancer can access and are offered local, high-quality, face-to-face cancer information and support services.
  
Improved communication: Health and social care leaders must make information needs assessment and communication skills a higher priority in service plans and training, to ensure professionals identify what information people with cancer need and provide appropriate support.

A Macmillan nurse hugging a person affected by cancer. Both their faces are turned away from the camera.

3. I get the treatment and care which are best for my cancer and my life

Too many people – particularly older people – are not given the best possible treatment and care for cancer, reducing their chances of survival, and there are simply not enough clinical nurse specialists to go around.

To people with cancer this outcome means:

  • My medical needs in relation to my cancer and its treatment (including ongoing issues after my cancer treatment) are met with the best treatment and care available. 
  • I start treatment as soon as necessary. 
  • My pain and discomfort is minimised. 
  • I know that services and my care are well co-ordinated and designed around me and my needs. 
  • I only go to hospital when necessary.

What Macmillan says needs to be done

Clinical nurse specialists: The NHS must increase access to clinical nurse specialists for people with cancer, particularly for urological, skin, head and neck and rarer cancers, and in both hospitals and the community, to ensure people have the best possible experience of care and are able to access all available support.

Improved access to treatment: NHS leaders must tackle postcode lotteries to ensure all people living with cancer in the UK receive the care and treatment that offers the best clinical outcomes, regardless of where they live.

Age-friendly care: We must eliminate the barriers that stop older people being able to access treatment. All decisions about treatment and care must be based on an individual’s fitness, not their chronological age, and we must re-examine how well social care services are meeting the needs of older people with cancer.

A Macmillan nurse hugging a person affected by cancer. Both their faces are turned away from the camera.

4. Those around me are well supported

People who care for those with cancer or play an important role in their day-to-day lives are missing out on vital support.

To people with cancer this outcome means:

  • My carer(s) receives the support they need personally (a carer meaning a friend or family member who, without being paid to do so, looks after someone with cancer who couldn’t manage without this support). 
  • My carer(s) is supported to provide me with care.
  • My family and friends are emotionally, practically and financially supported to deal with the impact of my cancer. 
  • My employer and colleagues receive the information and support they need to help me remain in or return to work if I want to.

What Macmillan says needs to be done

Increased collaboration to identify carers: Healthcare providers must work with local authorities to formally identify, assess and support people who care for those with cancer.

Better support for carers:
Health and social care services must work together to ensure carers receive the emotional and practical support they need, including advice on benefits, finances and continuing with employment.
  
Support for employers: Employers must provide better support for employees with cancer and those who care for them, including fulfilling their legal obligations regarding making reasonable adjustments.


Joe sits in his living room reading a Macmillan carer's booklet

5. I am treated with dignity and respect

Too often people with cancer are not treated as individuals during treatment and are shown a lack of compassion when at their most vulnerable. NHS leaders must treat patient experience and clinical outcomes with parity of esteem and recognise that both good patient and staff experience are vital for good clinical outcomes.

To people with cancer this outcome means:

  • I am treated as an individual, not just as a set of symptoms.
  • Professionals communicate with me clearly and sensitively.
  • Professionals give me privacy where appropriate and possible.
  • My feedback is sought and my concerns are acted upon.
  • I am treated with care and compassion by the health and social care professionals looking after me, and by any other professional or organisation I interact with in relation to my cancer including my employer, financial institutions and benefits services.

What Macmillan says needs to be done

National surveys: All countries in the UK should have regular,cancer-specific patient experience surveys that cover hospital, primary, community and social care. 

Support for front-line staff: NHS leaders must ensure all front line staff have the training and support they need to prioritise care and compassion as well as excellent clinical treatment in their day to-day role. 

Staff experience: NHS leaders must recognise that good staff experience is essential for good patient experience and provide support for staff mental and physical well being.

Roy stands in his kitchen

6. I know what I can do to help myself and who else can help me

Many people with cancer feel abandoned to fend for themselves after their treatment ends and do not know where to turn for help or support.


To people with cancer this call means:

  • I am supported so that I can manage my condition when I’m at home.
  • I know who to contact for support at any point following my cancer diagnosis.
  • I know what to do to improve my health and wellbeing and I am supported to do so.

What Macmillan says needs to be done

Recovery Package: To better support people with cancer after treatment ends, everyone diagnosed with cancer in the UK should receive a cancer Recovery Package.

This should include:

  • Holistic Needs Assessments (identifying their physical, emotional, financial and other needs) and care plans at key points during treatment and recovery
  • A Treatment Summary, completed at the end of treatment and sent to the person with cancer and their GP
  • A Cancer Care Review, completed six months after treatment by the person’s GP or practice nurse, to discuss their needs, possible long-term consequences of treatment and what they can do to help themselves
  • An education and support event such as a Health and Wellbeing Clinic, to help people work towards supported self-management and a healthy lifestyle, including physical activity and directing them to support available in their local community.
48% of people with cancer felt they definitely received enough support after treatment from health and social care services, but a quarter of people did not receive enough care.
48% of people with cancer felt they definitely received enough support after treatment from health and social care services, but a quarter of people did not receive enough care.

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Watch: Macmillan's Recovery Package

Watch: Macmillan's Recovery Package


7. I can enjoy life

Significant numbers of people with cancer experience long-term physical, emotional, financial and work issues, many of which could be improved by better advice and support and increasing physical activity.

To people with cancer this outcome means:

  • My emotional well-being is the best it can be, all things considered.
  • I can enjoy the best quality of life for as long as possible and do things I love doing, where possible.
  • I do not live in financial hardship as a consequence of my cancer.

What Macmillan says needs to be done

Physical activity: Health and social care professionals must promote the benefits of physical activity to people with cancer, and local authorities need to provide appropriate schemes to help deliver long-lasting behaviour change.

Specialist work support: We need the UK governments’ departments for work and health to support the employment of people with cancer and other long-term health conditions, such as via improved availability and access to vocational rehabilitation support, and employers must also provide better support to those affected by cancer.

Benefits support and advice: The UK government must ensure people with cancer are fully supported by the welfare system. This includes assessing their claims for Personal Independence Payments fairly and promptly and ensuring they are not forced into work-related activity to receive Employment and Support Allowance, as well as ensuring they can access advice and support when needed and are protected from further cuts to welfare spending.

The effects of increasing physical activity in people living with cancer: The less exercise the more chance there is the cancer will return and the more chance you will feel tired, anxious and depressed. Survival rates, quality of life, and the ability to return to work are shown to increase with the more physical activity.
The effects of increasing physical activity in people living with cancer: The less exercise the more chance there is the cancer will return and the more chance you will feel tired, anxious and depressed. Survival rates, quality of life, and the ability to return to work are shown to increase with the more physical activity.

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A diagram showing the effects of increasing physical activity in people living with cancer: The less exercise the more chance there is the cancer will return and the more chance you will feel tired, anxious and depressed. Survival rates, quality of life, and the ability to return to work are shown to increase with the more physical activity.

8. I feel part of a community and I'm inspired to give something back

Many people face cancer alone or lack support from their family and friends. We need more social networks and charitable activity such as volunteering and fundraising to help strengthen communities.

To people with cancer this outcome means:

  • I know where there are other people like me who I can turn to.
  • I do not feel alone in any aspect of my cancer journey.
  • I know what opportunities are available for me to get involved with voluntary organisations and services.
  • The contribution I make to my community and people affected by cancer is valued.

What Macmillan says needs to be done

Acknowledge isolation: Health and social care professionals must recognise that isolation can have a real, negative impact on people’s health, and the NHS and local government should prioritise the funding of community services to provide additional emotional support to people with cancer.

Building volunteering capacity: Health and social care leaders must invest in practical and emotional support services delivered by volunteers and ensure volunteers have the support and training required to deliver a high-quality service.

Promote the benefits of giving back: National and local health and social care leaders should encourage people affected by cancer to directly support the voluntary organisations involved in their care by giving something back as volunteers, fundraisers, campaigners or in other ways and at a time that is right for them.

Vivek stands in his living room.

9. I want to die well

Too many people who die from cancer are denied a ‘good’ death – they are not able to die in the place of their choosing and experience inadequate control of pain and other symptoms.

To people with cancer this outcome means:

  • I will die free from symptoms such as pain and fear, and with dignity.
  • I will die in the place and manner of my choosing.
  • I will be emotionally and spiritually supported at the end of my life.
  • My family and friends will be emotionally and spiritually supported at the end of my life and beyond.

What Macmillan says needs to be done

End-of-life care package: Everyone who is approaching the end of their lives with cancer should receive a package of care to help them die in the place and manner of their choosing with as little pain as possible.

This care should include:

  • Having their preferences for end-of-life care and an advance/anticipatory care plan recorded on an end-of-life care register
  • Free social care at the end of life to help with simple day-to-day tasks so people can stay at home for longer
  • 24/7 community services, particularly community and palliative care nurses and good GP support, including out-of-hours
  • A model of care that incorporates early referral, home-based clinical interventions and close, flexible collaboration between primary care and other community-based services, such as the evidence-based Macmillan Specialist Care at Home model

    Denied their dying wish: With the right support, three in four (73%) people with cancer would prefer to die at home, but fewer than a third (30%) are currently able to do so.
    Denied their dying wish: With the right support, three in four (73%) people with cancer would prefer to die at home, but fewer than a third (30%) are currently able to do so.

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An illustration showing that three in four (73%) people with cancer would prefer to die at home, but fewer than a third (30%) are currently able to do so.