The cancer survivorship agenda Why we need to support people living with or beyond cancer

Beth, 33, Surrey diagnosed with cervical cancer in 2005

 Ive learnt that survivorship is all about living with the emotional and physical effects of a cancer diagnosis.  Im still not sure whether Ive had cancer, or I have cancer. When does it become the past tense?

 Macmillan calls upon health and social care organisations and cancer charities to put in place services to meet the needs of people living with or beyond cancer and their carers. Whether a person thinks they had cancer or have cancer shouldnt matter. We want them to be able to get the care and support they need.
Ciarn Devane, Chief Executive, Macmillan Cancer Support

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The cancer survivorship agenda

Contents
Foreword Who is a cancer survivor?
Support programmes for cancer survivors Living with active, progressive and recurrent cancer Supporting people to help themselves Getting back to work The late effects of cancer treatment Helping survivors of childhood cancer Caring for carers What is Macmillan doing to help cancer survivors? Cancer survivors matter 04 06 08 10 12 14 16 18 20 22 26

What needs to be done to support people living with or beyond cancer? 07

What are governments in the UK doing to meet the needs of cancer survivors? 24

Thank you to everyone who agreed to share their stories for this booklet. Photographs have been posed by models, but the quotes used are from real people.
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Cancer survivorship?
A cancer survivor is someone living with or beyond cancer.

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The cancer survivorship agenda

Foreword

Two million reasons why cancer survivorship is important

This booklet is intended to illustrate some of the problems faced by people living with or beyond cancer and suggest potential solutions.
In the UK, the number of people dying from cancer is falling but the number of people diagnosed with the illness is rising.1 Research commissioned by Macmillan estimates that the number of people living with or beyond cancer currently stands at two million and is rising by more than 3% a year.2 One in ten people over 65 are living with a diagnosis of cancer.3 Though its a cause for celebration that more people than ever are surviving after a diagnosis of cancer, Macmillan knows that the impact of a cancer diagnosis does not suddenly stop when treatment is over.4 People who have finished treatment tell us they have difficulties returning to normal life. They struggle emotionally, experience fatigue and may need to adjust to changes treatment has made to their body. As well as having to cope with both short-term and long-term side effects of treatment, some people may experience effects as a result of cancer treatment some time later. Some may live with the knowledge that their cancer can not be cured, even though they feel healthy. Others want to get back to work but encounter difficulties returning to their old job.

These people are cancer survivors. They are living with or beyond cancer.
There are some positives. Our research shows that people living with or beyond cancer are slightly more likely to say they have a positive outlook on life than the rest of the population and say they have more close friends.5 But Macmillan believes more needs to be done to improve the lives of cancer survivors. Macmillans aspiration is that:  People living with or beyond cancer will have easy access to high quality care and treatment to meet their medical, practical, emotional and financial needs. This support will be available even years after their treatment.  People living with or beyond cancer will be able to enjoy life, with a full range of opportunities and life chances.

1 2,3 4,5

http://info.cancerresearchuk.org/cancerstats/incidence/prevalence/?a=5441 Kings College London, Macmillan Cancer Support and National Cancer Intelligence Network, Cancer Prevalence in the UK, 2008, 2008 Macmillan Cancer Support, Health and well-being survey, 2008

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Foreword

 People living with or beyond cancer will be respected and included as equal members of society.  People living with or beyond cancer will be able to play as active a role in decisions about their treatment, care and support provision as they wish.  Carers of people living with or beyond cancer will be provided with the right information, advice and support. We believe this can be achieved if the following is delivered:  A post-treatment assessment and a care plan for everyone who finishes treatment.  Appropriate services to help people recover from the medical, practical and emotional effects of treatment.  Regular assessment and a care plan for everyone who is diagnosed with active, progressive or recurrent cancer.  High-quality information at key stages throughout a persons cancer journey which is available in a range of formats so that people can make decisions about their own care if they wish.  Tools and information to help people support themselves.  Advice and support to help people get back to work.  Support for people experiencing late effects of treatment.

 Support for carers, including assessment of their needs leading to appropriate support.  Specialised services that meet the needs of children and young people surviving cancer.  Developing the skills of health and social care professionals so they can provide better support to cancer survivors.  Undertaking more research into the needs of people living with or beyond cancer, piloting ways these needs could be met and recording of data.  Involving people living with or beyond cancer in the development of services.  Health care, social care and voluntary organisations working more closely together. Supporting people living with or beyond cancer is a paramount concern. We need to make a difference now. Tell us how you can help and your thoughts on the survivorship agenda by emailing us at survivorship@macmillan.org.uk. Or to find out more about Macmillans work to improve support for cancer survivors, visit www.macmillan.org. uk/survivorship

Ciarn Devane, Chief Executive of Macmillan Cancer Support

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The cancer survivorship agenda

Who is a cancer survivor?

A cancer survivor is someone living with or beyond cancer.
This means someone who:  has completed initial cancer management and has no apparent evidence of active disease, or  is living with progressive disease and may be receiving cancer treatment but is not in the terminal phase of illness (last six months of life), or  has had cancer in the past. People at the event told us they wanted: rapid access to specialist services  choice and flexibility when accessing care good quality information  accurate documentation about their health and treatment  all health care professionals involved to agree, understand and provide continuity of care  new ways of accessing follow-up, including over the telephone, by referring themselves and in a group.

What are the views of people living with or beyond cancer?

In February 2008, Macmillan and the Cancer Services Collaborative Improvement Partnership6 ran an event for people living with cancer and their carers. We asked them about their views on living with or beyond cancer.  Nearly three quarters of people (73%) supported our definition of a cancer survivor.  When people were asked to choose their preferred description from a list, 42% of people preferred living with and beyond cancer to describe this part of the cancer journey, whilst 36% liked the term survivorship.7

6 7

Now NHS Improvement www.macmillan.org.uk/documents/support_material/get_involved/campaigns/survivorship/survivorship_workshop.pdf

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What needs to be done to support people living with or beyond cancer?

The following sections set out the needs of cancer survivors and propose potential solutions.

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The cancer survivorship agenda

Support programmes for cancer survivors

Macmillan believes cancer survivors deserve high-quality, flexible and accessible support after treatment. This support should include:
 An assessment by a health or social care professional of a cancer survivors practical, medical, emotional and financial needs and those of their carer.  A care plan that tells a cancer survivor what to look out for including: the late effects of cancer; how they can get further support if it is needed; details of local self help and support groups; and the name of a health or social care contact who can provide ongoing help and support for them and their carer.  A letter sent to a cancer survivor when they have completed treatment that states what treatment they have received, their ongoing needs, things to look out for and how to get help if needed. A copy of this letter should also be sent to their GP.  Support programmes that help cancer survivors and their carers to recover from the medical, emotional and practical effects of treatment and also the financial problems caused by cancer. Problems can persist after cancer treatment and people need help to minimise these long-term effects. Support programmes should also support them to identify and self-manage common problems if they wish to.  Support programmes include return to work programmes; self help and support groups; emotional support services; financial advice; specialist medical services; buddying and befriending schemes; and practical support schemes providing help with gardening and childcare.

Follow-up care now

Follow-up care does not meet cancer survivors full range of needs, failing to provide or refer them to vital emotional, financial and practical support. This table illustrates the differences between followup care now and what Macmillan would like to see delivered by post-treatment support in the future.

 People dont stop feeling the physical or emotional effects of cancer just because they have finished treatment.
Professor Jessica Corner, Chief Clinician, Macmillan Cancer Support
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Support programmes for cancer survivors

Differences between follow-up care now and post-treatment support in the future

What is the aim?

Follow-up care now to provide medical support to help detect recurrence of cancer  to help cancer survivors manage their symptoms better with the support of their clinician.

Post-treatment support in the future to provide medical support to help detect recurrence of cancer  to help cancer survivors manage their symptoms better with the support of their clinician  to tell people living with or beyond cancer and their carers about, and refer them to, specialist services that can help with their medical, practical and emotional needs  to spot late effects more quickly and provide appropriate support and treatment to provide data on outcomes of care.

What happens?

What works well now:  diagnostic tests, for example mammograms and blood tests clinical assessment by a clinician conversation with a clinician. Areas for improvement: long waits in hospital for outpatients  GPs are not always informed about treatment and follow-up care  people have to travel to and from hospital, costing them money and time.

 assessments of peoples full range of needs  cancer survivors and professionals will work in partnership to develop a post-treatment care plan letters sent to GP and patient  tools to help people look after themselves  information about local support groups  referral to support services that are tailored to peoples individual needs.

How is it provided?

Health services determine how it is provided, usually in a hospital or a GP surgery.

People should be able to choose whether they receive post-treatment support:  from a clinician, either in hospital or at a GP practice as part of a group of patients over the telephone.

How often?

Every few months until clinicians determine it is not necessary.

regularly to update the care plan  people living with or beyond cancer can also self-refer whenever they need help.
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The cancer survivorship agenda

Living with active, progressive and recurrent cancer

Some people who have had a cancer diagnosis may face the prospect of living with an active cancer which cannot be cured, either because it has progressed to other tissue nearby (locally advanced) or another part of the body (metastases).
Some people might have advanced or metastatic cancer when they are first diagnosed, while for others cancer may come back years after it was originally diagnosed (recurrent). In this situation cancer is usually not curable, but treatment and care can often help to prolong or improve quality of life. Problems faced by people with active, progressive and recurrent cancer:  People who suspect that their cancer may have returned report problems in accessing cancer services, which can delay them in obtaining a timely diagnosis and receiving treatment.  Patients and carers often have different information needs but they can find it difficult to obtain highquality information which can help them to make decisions about treatment and care.  People are not always receiving the support they need to manage their symptoms which could include breathlessness, fatigue, bone pain or depression.  Over half (54%) of people who die as a result of cancer were not receiving Disability Living Allowance or Attendance Allowance, to which they were entitled.8 They need advice, guidance and information about financial entitlements. We believe the following would help to tackle these problems:  Assessing peoples needs and providing them with a care plan.  Improving the way that health professionals communicate with patients by ensuring that timely end of life discussions are held with the patient.  Improving the information and support available about this stage of the illness.  Providing people with advice, guidance and information so that they can claim any financial entitlements.  Increasing the help and support provided by specialist nurses and health and social care professionals working in hospitals and in the community.

Macmillan Cancer Relief, The unclaimed millions, 2004

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Living with active, progressive and recurrent cancer

 Though its great news that there are more people living with cancer and its consequences, we mustnt forget that some people will be living with advanced disease and the knowledge that their cancer isnt curable.  Doctors need to make sure their patients are provided with the right care and support towards the end of their lives. They need to ask themselves if they would be surprised if their patient were to die in the next six to twelve months. If the answer is no, they need to ensure they talk to their patient and the patients carer about end of life care and applying for financial support.
Professor Jane Maher, Chief Medical Officer, Macmillan Cancer Support

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The cancer survivorship agenda

Supporting people to help themselves

People living with or beyond cancer want to know how to look after themselves after a cancer diagnosis so they can return to normal life as much as possible.
They want to know what diet and lifestyle changes they should make, how to manage the effects of treatment and where they can find more support if they need it. There are currently few self-management or self-care programmes for people living with or beyond cancer.9 Cancer survivors should be supported to take as active a role in managing their own care as they wish. We believe the following would help to tackle this problem:  Research to inform the development of a range of self-management support that includes tools, courses and training programmes for cancer survivors.  Considering peoples selfmanagement needs in post-treatment assessments and care plans.  More opportunities for people to attend programmes such as Macmillans Living with cancer course and to join local self help and support groups.

People living with or beyond cancer are seven times more likely to say they find it difficult to do personal care tasks, such as washing and dressing, than people who do not have a long-term condition.10

9 10

Wilson P.M.(2008) The UK Expert Patient Programme: Lessons learned and implications for cancer survivors self care support programmes, Journal of Cancer Surviv, 2:45-52 Macmillan Cancer Support, Health and well-being survey, 2008. Difficult means respondents answered somewhat difficult, difficult or impossible

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Supporting people to help themselves

Anthony, 28, Cheshire diagnosed with testicular cancer in 2007

 My cancer experience was really stressful as Im self-employed and have had a lot of work worries. Ive finished treatment but the hardest part about the cancer now is how it has affected me mentally. Im convinced that every ache or pain that I get is the cancer returning. They told me its been removed but its a constant fear. Ive read reports about nutritional therapy and would like to find out more, but dont know who to ask for guidance.

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The cancer survivorship agenda

Getting back to work

Over three quarters of a million people of working age are living with or beyond cancer in the UK.11
People who have had cancer treatment want to go back to work when they feel fit and ready. It has been estimated that about 62% of people diagnosed with cancer are able to return to work.12 Problems people face getting back to work:  Many people return to work without medical or rehabilitation advice. One survey showed that fewer than half were advised by cancer doctors about the impact of their treatment on their work.13 Many of those who do return find their earning capacity is permanently affected.  Return to work services for people living with or beyond cancer are not high on anyones agenda.14 Occupational health provision is patchy and limited to larger employers; NHS cancer services are focused on treatment not return to work; NHS rehabilitation services are focused on discharging people from hospital, not getting them fit for work; Jobcentre Plus services are focused on getting people back into work, not job retention.  A 2005 survey found that 50% of people with cancer were not informed by employers of their statutory rights. Less than half were offered flexible working arrangements by their employers on their return.15
11  12 

 A 2007 survey found that though four out of five employers were aware of the Disability Discrimination Act (DDA) employment provisions, only one in five considered cancer to be a disability.16 The DDA aims to end the discrimination that many disabled people face. We believe the following will help people living with or beyond cancer get back to work:  comprehensive information and advice on how they can return to work  the development and testing of a return to work model for people living with cancer  providing access to occupational health services for people who work in small or medium organisations or who are self employed  greater awareness among employers that cancer is covered by the DDA and the obligations they must abide by  more research into the barriers people face when they try to return to work.

16
13 14 15

Macmillan Cancer Support, Health and well-being survey, 2008 Spelten E, Sprangers M, Verbeek J, Factors reported to influence the return to work of cancer survivors: a literature review, Psycho-Oncology 11: 124-131 (2002) Cancerbackup, Work and Cancer: How cancer affects working lives, 2005 K Staley, Returning to work: cancer and vocational rehabilitation, Report of a scoping study for Macmillan Cancer Support, February 2008 Cancerbackup, Work and cancer: How cancer affects working lives, 2005 Simm C, Aston J, Williams C, Hill D, Bellis A, Meager N, Organisations responses to the Disability Discrimination Act DWP Research Report 410 (2007)

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Getting back to work

Neil, 51, Glasgow

 Since my diagnosis of bladder cancer, Ive been made to feel totally unwelcome by my managers at work. Ive gone from being one of the most trained in my team to one of the least. Ive taken very little time off for my treatment and checkups and Ive tried to be even more productive. But Ive got no support and no ones talking to me. I cant afford to resign, but thats what I feel like doing.

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The cancer survivorship agenda

The late effects of cancer treatment

Chemotherapy, radiotherapy and surgery can all cause late side effects of treatment. Late effects could include lymphoedema [a swelling that develops as a result of an impaired lymphatic system], changes in bowel or bladder function or impaired fertility some years after treatment.
Problems relating to the late effects of cancer:  Information is not routinely collected about the late effects of treatment, so there is no data on the number of people living with the late effects of treatment in the UK.  GPs and other health professionals do not always associate a late effect with a past diagnosis of cancer and consequently do not always provide people with the support and information they need to manage these problems.  Some people have very complex problems severely affecting their health and well-being. There are currently few specialist late effects services available to help them. We believe the following will help people living with the late effects of cancer:  Introduction of requirements to record the incidence of late effects across the UK.  Raising health and social care professionals awareness and understanding of the impact of late effects.  Information and support to help people manage their own problems where possible, including information about emotional and practical support services in their area.  Specialist services for those with complex problems.

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The late effects of cancer treatment

 Too few health care professionals are aware of the devastating impact late effects of cancer treatment can have on the quality of life of a person living with or beyond cancer.  We need to put measures in place now so that people who suffer the sometimes debilitating impact of changes in bowel and bladder function, sexual relations, lymphoedema or other late complications of essential cancer treatments are identified, provided with appropriate medical and other interventions, and are supported to manage their own condition.
Dr David Linden, Macmillan GP Adviser for Scotland and Northern Ireland

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The cancer survivorship agenda

Helping survivors of childhood cancer

There are now more than 20,000 survivors of childhood and young person cancer in the UK.17 Every day 10 children and young people are diagnosed with cancer.18 More and more are surviving childhood cancer, although some will have to cope with the late effects of their cancer treatment.
Problems facing children, teenagers and young people who have had cancer:  Time off school for treatment and recuperation can mean that survivors of childhood cancer have reduced employment or education opportunities.  They may experience growth and development delays. Radiotherapy can affect bone growth and delay puberty.19  They may experience late effects of treatment, such as problems with fertility, heart problems or even a second tumour. Some evidence indicates that adults who have survived childhood cancer have a three times higher risk of having a chronic condition than people who havent had childhood cancer.20 We believe the following is needed for survivors of childhood and young persons cancer:  access to specialist late effects services specific to children, teenagers and young adults flexible educational provision  innovative ways of providing post-treatment support, including emotional support  parents and guardians to be involved in post-treatment care and planning  dedicated forums for parents and siblings  parents and guardians to be better informed of their statutory rights as working carers.

The needs of survivors of childhood cancer are very specific. The effects of the disease are not only physical but also emotional, which can manifest into adulthood.
Macmillan Paediatric Oncology Outreach Service Team, Newcastle Upon Tyne NHS Foundation Trust
20
17 18 19

www.clicsargent.org.uk/Aboutus/Mediacentre/Keymessages www.clicsargent.org.uk/Aboutchildhoodcancer/Forsurvivors www.clicsargent.org.uk/Aboutchildhoodcancer/Beyondtreatment/Longtermside-effects Oeffinger K et al 2001, Chronic Health Conditions in Adult Survivors of Childhood Cancer, New England Journal of Medicine 555(15): 1572-82

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Helping survivors of childhood cancer

Jacqui, 51, Essex

 It was 2007 when my then 15 year old daughter was told she had a rare cancer. Shes been through two operations and radiotherapy, and shes been left with physical scars. As parents, we found it really hard to support her with the emotional effects. There was no one in the area to support us, or her, and the only way forward was by doing all the research myself and then setting up our own local support group. Macmillan gave us a grant towards the costs, and at our first meeting all our hard work was rewarded: six families came along for the support they were lacking, too.

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The cancer survivorship agenda

Caring for carers

The carers of people living with or beyond cancer need support too. 38% of carers who care for someone living with or beyond cancer spend more than 30 hours per week caring for them.21
People who care for someone living with or beyond cancer face the following problems:  Caring can affect both the emotional and physical health of carers.22 Over half of carers who are caring for someone living with or beyond cancer feel anxious at least some of the time, more than any other type of carer.23  Carers are entitled to an assessment of their needs by social services but may not receive one. Or they may have an assessment and then find there arent any local services available to meet their needs.24  Carers find it difficult to navigate the system to get the help they need.  Many long-term carers are forced to work part-time, miss out on promotions or give up work altogether to care.25 This can affect their income and mean they have a reduced or no pension.26 We believe the following support needs to be provided for carers:  Carers need to be included in posttreatment assessments and care planning, including assessment of their own needs and how those needs will be met through integrated health and social care provision.  Carers and employers need to be better informed of the statutory rights of working carers, including the right to request flexible working.  Health and social care services need to meet the needs of carers as well as people living with or beyond cancer. The NHS should provide them with regular health checks and ensure carers can make appointments that fit in with their caring responsibilities.  Carers need more flexible, tailored practical and emotional support, such as help in the home and emotional support such as befriending schemes.

Caring for a loved one can be a huge physical and emotional burden.
Astrid Campbell, Macmillan Crossroads for Carers Strategic Partnerships Manager
24 25 26
21 22 23

Macmillan Cancer Support, Health and well-being survey, 2008 www.carersweek.org 1,997 declared carers took part in the Carers Week survey between February and March 2008 Macmillan Cancer Support, Health and well-being survey, 2008 Institute for Public Policy Research, Just care? A fresh approach to adult services, May 2008 Carers UK/ Leeds University, Valuing carers Calculating the value of unpaid care, 2007 www.carersuk.org/newsandcampaigns/shortchanged

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Caring for carers

Su, 46, Swansea looked after her husband Wyn for 18 months when he was diagnosed with cancer four years ago
 You never stop being a carer. Even though Wyn is back at work we still have to think about where we go on holiday and where and what we eat because of the long-term side effects of his treatment. In the early days following his treatment I had to force Wyn to go out alone. I had been constantly by his side for a year and a half and so it was difficult for him not to have me around. I had to make him start driving again and help him find the confidence to go out by himself and become independent once more.

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The cancer survivorship agenda

What is Macmillan doing to help cancer survivors?

 We are working with governments across the UK to help develop understanding of the needs of cancer survivors and their carers, to lobby for more integrated health and social care, and to develop services that meet the needs of the two million people living with or beyond cancer.  We are providing information and support through our information and support services across the UK and through our publications, websites and national support helplines.  We are providing care and support through our network of Macmillan professionals, which includes nurses, doctors, social workers, speech and language therapists, occupational therapists, dieticians, physiotherapists, social workers, speech and language therapists, benefit advisers, and other health and social care professionals.  We are providing financial help and support through one-off grants and benefits advice.  We are working with local partners, such as the NHS, local authorities and the voluntary sector, to develop local services for people living with or beyond cancer.  We are giving people the skills and knowledge to manage their own condition through programmes such as our Living with cancer course and supporting over 800 independent self help and support groups and organisations across the UK.  We support carers of people living with or beyond cancer by providing them with information and practical and emotional support.  We are commissioning research to find out more about the needs of people living with or beyond cancer.

We are working with local partners, such as the NHS, local authorities and the voluntary sector, to develop local services for people living with or beyond cancer.
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What is Macmillan doing to help cancer survivors?

Josh, 71, Cleveland

 My cancer was in my neck and voice box. I am now a laryngectomee after surgery almost two years ago. Its been a hard battle getting back to some sort of normality. Ive five allotments, and although Im driving my van and tractor again, I still get breathless and have real difficulty lifting heavy loads when Im gardening. My speech has returned but it can come out a little gargled sometimes. People who dont know me well have a problem understanding me.

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The cancer survivorship agenda

What are governments in the UK doing to meet the needs of cancer survivors?
Macmillan is lobbying governments in England, Scotland, Wales and Northern Ireland to improve services for people living with or beyond cancer.
In England, Macmillan is co-chairing a National Cancer Survivorship Initiative (NCSI) with the Department of Health. One of the first activities of the NCSI was a think tank event in March 2008, bringing together key individuals and organisations to consider the needs of people living with or beyond cancer and their carers. The report of the event is available on Macmillans website and has informed the development of the NCSI.27  he NCSI aims to provide better support T to cancer survivors by focusing on the following areas: assessment and care planning; managing active and progressive disease; late effects; children and young people; work and finance; self-management; research; information; workforce development and commissioning. As part of the NCSI, Macmillan is working with NHS Improvement to pilot new models of follow-up to provide better posttreatment support. NHS Trusts and social care organisations will test out new models of care for cancer survivors, supported by NHS Improvement.28 All patients are individuals, but my personal view is that most cancer survivors are likely to want:  To know that they have received (or are continuing to receive) the best possible treatment for their condition to minimise their risk of recurrence.  To get back to as normal a life as possible (but not necessarily the same as before).  To know they have easy access to reliable information, expert advice, support and care tailored to their particular needs and preferences.  To know that they and their families will remain financially secure.  To know that any recurrence of cancer will be dealt with as effectively as possible.  To know that they will be involved in decision making to the extent that they wish. Professor Mike Richards, National Cancer Director of England

27

28

www.macmillan.org.uk/documents/support_material/get_involved/campaigns/survivorship/survivorship_report.pdf  NHS Improvement is a national programme working with clinical networks and NHS organisations to deliver improvements across cancer care NHS Improvement also works with cardiac, stroke and diagnostics services

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What are governments in the UK doing to meet the needs of cancer survivors?

n Scotland, the publication of the I Scottish Governments health strategy, Better Health, Better Care, at the end of 2007, initiated a focus on the needs of people with long-term conditions. Macmillan is working with the Government to address the needs of cancer survivors and their carers through the new cancer strategy, Better Cancer Care. We are piloting new models of follow-up care with health boards, including telephone follow-up services, community follow-up and a clinic to support people experiencing late effects of treatment. The Scottish Government is committed to ensuring that people living with or beyond cancer are fully supported after their treatment ends and intends to continue to work with the health and social care sectors and voluntary organisations like Macmillan to make sure that the Better Cancer Care strategy addresses the needs of cancer survivors. Nicola Sturgeon MSP, Deputy First Minister and Cabinet Secretary for Health and Wellbeing

Tackling cancer and improving cancer services is one of the Assembly Governments top priorities. The programme of work set out in Designed to Tackle Cancer in Wales Two includes a clear commitment to develop and implement a new national standard for rehabilitation and the ongoing needs of cancer survivorship. Edwina Hart AM, Health Minister for Wales

In Northern Ireland, the Northern Ireland Assembly is committed to supporting the needs of cancer survivors and their carers in the new Cancer Service Framework for Cancer Prevention, Treatment and Care (2008). It includes standards to ensure that the development of new models of followup care is a priority. Macmillan will be working closely with the Assembly to help deliver the Framework. Cancer care has changed dramatically over recent years with many more people surviving cancer. We need a new way to support and care for those living with or beyond cancer in Northern Ireland. Liz Henderson, Network Nurse Director, Northern Ireland

In Wales, Macmillan has ensured that the latest Welsh Assembly Government cancer strategy, Designed to Tackle Cancer in Wales Phase Two, acknowledges the needs of cancer survivors and their carers. As part of the Wales Cancer Alliance, we are influencing the development of the new Cancer Rehabilitation Standard so that it addresses the specific requirements of people living with or beyond cancer. Macmillan will work with the Welsh Assembly Government to ensure that the post-treatment support needs of people living with or beyond cancer are explored as part of the development of the Standard.

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The cancer survivorship agenda

Cancer survivors matter

Macmillan wants the two million people living with or beyond cancer in the UK to be able to access the care and support they want and need.
We believe this can be achieved if the following is delivered:  A post-treatment assessment and a care plan for everyone who finishes treatment.  Appropriate services to help people recover from the medical, practical and emotional effects of treatment.  Regular assessment and a care plan for everyone who is diagnosed with active, progressive or recurrent cancer.  High-quality information at key stages throughout a persons cancer journey which is available in a range of formats so that people can make decisions about their own care if they wish.  Tools and information to help people support themselves.  Advice and support to help people get back to work.  Support for people experiencing late effects of treatment.  Support for carers, including assessment of their needs leading to appropriate support.  Specialised services that meet the needs of children and young people surviving cancer.  Developing the skills of health and social care professionals so they can provide better support to cancer survivors.
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 Undertaking more research into the needs of people living with or beyond cancer, piloting ways these needs could be met and recording of data.  Involving people living with or beyond cancer in the development of services.  Health care, social care and voluntary organisations working more closely together. The concept of cancer survivorship is new for many people working in health and social care. The reality of living with or beyond cancer is not new for two million people in the UK. Governments across the UK must ensure that people living with or beyond cancer are not abandoned after treatment. Instead, they should provide support for all their needs, from the point of diagnosis and beyond. People will need access to a mixture of both specialist cancer services and generic health and social care services. NHS services must work with social care services and voluntary sector organisations, such as Macmillan, to ensure that people are supported beyond treatment. Supporting people living with or beyond cancer is a paramount concern. We need to make a difference now. Tell us how you can help and your thoughts on the survivorship agenda by emailing us at survivorship@macmillan.org.uk. Or to find out more about Macmillan's work to improve support for cancer survivors, visit www.macmillan.org.uk/survivorship

Cancer survivors matter

Alison, 45, Derbyshire diagnosed with breast cancer in 2007

 Ive been through surgery, reconstruction, and a hysterectomy. Im now on treatment drugs for the next seven years and am suffering from horrendous side effects. The irony is that I have to take a basketful of other medicines just to counteract the effects of the treatment drugs.  My joints are painful and weak from the lack of oestrogen in my body, and I sleep very poorly because of night sweats. In hospital they gave me sleeping pills, but now Im an outpatient, my GP refuses to prescribe them. Im beginning to wonder if the quality of my everyday life is worth sacrificing for these drugs.
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The cancer survivorship agenda

 Two million people are living with or beyond cancer in the UK. Macmillan is here to make sure all of them receive the help, support and care they need.
Ciarn Devane, Chief Executive, Macmillan Cancer Support

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Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support, and push for better cancer care. One in three of us will get cancer. Two million of us are living with it. We are all affected by cancer. We can all help. We are Macmillan.

For further copies of this booklet, call us on 0800 500 800 or visit www.be.macmillan.org.uk Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ Tel 0800 500 800 CancerLine 0808 808 2020 www.macmillan.org.uk
Macmillan Cancer Support, September 2008 MAC11578 Macmillan Cancer Support, registered charity number 261017. Isle of Man charity number 604.
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