Two Million Reasons

7/27/2019 Two Million Reasons

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


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Beth, 33, Surreydiagnosed with cervical cancer in 2005

Ive learnt that survivorship is all about living

with the emotional and physical effects of acancer diagnosis.

Im still not sure whether Ive had cancer,or I have cancer. When does it become thepast tense?


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Macmillan calls upon health andsocial care organisations and cancer

charities to put in place services tomeet the needs of people living withor beyond cancer and their carers.

Whether a person thinks theyhadcancer or have cancer shouldnt

matter. We want them to be able toget the care and support they need.

Ciarn Devane, Chief Executive, Macmillan Cancer Support


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The cancer survivorship agenda

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.

ContentsForeword 04

Who is a cancer survivor? 06

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

Support programmes for cancer survivors 08

Living with active, progressive and recurrent cancer 10

Supporting people to help themselves 12

Getting back to work 14

The late effects of cancer treatment 16

Helping survivors of childhood cancer 18

Caring for carers 20

What is Macmillan doing to help cancer survivors? 22

What are governments in the UK doing to meet the needs of cancer survivors? 24Cancer survivors matter 26


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Cancersurvivorship?

A cancer survivor is someone living with or beyond cancer.


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04

Foreword

Two million reasons why cancersurvivorship is important

This booklet is intended to illustrate some of the problems faced by peopleliving 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 adiagnosis 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 tonormal 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 cancersurvivors. They are livingwith 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:

Peoplelivingwithorbeyondcancerwillhave 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.

Peoplelivingwithorbeyond

cancer will be able to enjoy life,

with a full range of opportunities

and life chances.

1 http://info.cancerresearchuk.org/cancerstats/incidence/prevalence/?a=54412,3 Kings College London, Macmillan Cancer Support and National Cancer Intelligence Network, Cancer Prevalence in the UK, 2008, 20084,5 Macmillan Cancer Support, Health and well-being survey, 2008


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Foreword

Peoplelivingwithorbeyondcancer

will be respected and included as

equal members of society.

Peoplelivingwithorbeyondcancer

will be able to play as active a role in

decisions about their treatment, care

and support provision as they wish.

Carersofpeoplelivingwithorbeyond

cancer will be provided with the right

information, advice and support.

We believe this can be achieved

if the following is delivered:

Apost-treatmentassessment

and a care plan for everyone who

finishes treatment.

Appropriateservicestohelppeople

recover from the medical, practicaland emotional effects of treatment.

Regularassessmentandacareplan

for everyone who is diagnosed with

active, progressive or recurrent cancer.

High-qualityinformationatkeystages

throughout a persons cancer journey

which is available in a range of

formats so that people can make

decisions about their own care ifthey wish.

Toolsandinformationtohelppeople

support themselves.

Adviceandsupporttohelppeople

get back to work.

Supportforpeopleexperiencinglate

effects of treatment.

Supportforcarers,including

assessment of their needs leading

to appropriate support.

Specialisedservicesthatmeetthe

needs of children and young people

surviving cancer.

Developingtheskillsofhealth

and social care professionals so

they can provide better support

to cancer survivors.

Undertakingmoreresearchintothe

needs of people living with or beyond

cancer, piloting ways these needs

could be met and recording of data.

Involvingpeoplelivingwithorbeyond

cancer in the development of services.

Healthcare,socialcareand

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

[email protected].

Or to find out more about Macmillanswork to improve support for cancer

survivors, visitwww.macmillan.org.

uk/survivorship

Ciarn Devane, Chief Executive

of Macmillan Cancer Support


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06

Who is a cancer survivor?

This means someone who:

hascompletedinitialcancer

management and has no apparent

evidence of active disease, or

islivingwithprogressivediseaseand

may be receiving cancer treatment but

is not in the terminal phase of illness

(last six months of life), or

hashadcancerinthepast.

What are the views of peopleliving with or beyond cancer?

In February 2008, Macmillan and theCancer 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.

Nearlythreequartersofpeople

(73%) supported our definition

of a cancer survivor.

Whenpeoplewereaskedtochoosetheir 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

People at the event told us

they wanted:

rapidaccesstospecialistservices

choiceandflexibilitywhen

accessing care

goodqualityinformation

accuratedocumentationabouttheir

health and treatment

allhealthcareprofessionalsinvolved

to agree, understand and provide

continuity of care

newwaysofaccessingfollow-up,

including over the telephone, by

referring themselves and in a group.

A cancer survivor is someone living with or beyond cancer.

6 Now NHS Improvement7 www.macmillan.org.uk/documents/support_material/get_involved/campaigns/survivorship/survivorship_workshop.pdf


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What needs to bedone to support

people living withor beyond cancer?The following sections set out the needs of cancer survivorsand propose potential solutions.


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08

Support programmes forcancer survivors

Macmillan believes cancer survivors deserve high-quality, flexible andaccessible support after treatment. This support should include:

Anassessmentbyahealthorsocial

care professional of a cancer

survivors practical, medical,

emotional and financial needs and

those of their carer.

Acareplanthattellsacancersurvivor

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; andthe name of a health or social care

contact who can provide ongoing help

and support for them and their carer.

Alettersenttoacancersurvivorwhen

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.

Supportprogrammesthathelpcancer

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.

Supportprogrammesincludereturnto

work programmes; self help andsupport 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 nowFollow-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 follow-

up 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 becausethey have finished treatment.Professor Jessica Corner, Chief Clinician, Macmillan Cancer Support


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Support programmes for cancer survivors

09

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

Follow-up care now Post-treatment support in the future

What is the aim?

What happens?

How is it

provided?

How often?

toprovidemedicalsupport

tohelpdetectrecurrenceofcancer

tohelpcancersurvivorsmanagetheir

symptoms better with the support of

their clinician.

toprovidemedicalsupport

tohelpdetectrecurrenceofcancer

tohelpcancersurvivorsmanage

their symptoms better with the support

of their clinician

totellpeoplelivingwithorbeyond

cancer and their carers about, and

refer them to, specialist services that

can help with their medical, practical

and emotional needs

tospotlateeffectsmorequickly

and provide appropriate support

and treatment

toprovidedataonoutcomesofcare.

What works well now:diagnostictests,forexample

mammograms and blood tests

clinicalassessmentbyaclinician

conversationwithaclinician.

Areas for improvement:

longwaitsinhospitalforoutpatients

GPsarenotalwaysinformedabout

treatment and follow-up care

peoplehavetotraveltoandfrom

hospital, costing them money and time.

assessmentsofpeoplesfullrange of needs

cancersurvivorsandprofessionals

will work in partnership to develop

a post-treatment care plan

letterssenttoGPandpatient

toolstohelppeoplelookafter

themselves

informationaboutlocalsupportgroups

referraltosupportservicesthatare

tailored to peoples individual needs.

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:

fromaclinician,eitherinhospital

or at a GP practice

aspartofagroupofpatients

overthetelephone.

Every few months until clinicians

determine it is not necessary.

regularlytoupdatethecareplan

peoplelivingwithorbeyondcancercan

also self-refer whenever they need help.


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10

Living with active, progressiveand recurrent cancer

Some people who have had a cancer diagnosis may face the prospectof living with an active cancer which cannot be cured, either becauseit 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:

Peoplewhosuspectthattheircancer

may have returned report problems

in accessing cancer services, which

can delay them in obtaining a timely

diagnosis and receiving treatment.

Patientsandcarersoftenhave

different information needs but theycan find it difficult to obtain high-

quality information which can help

them to make decisions about

treatment and care.

Peoplearenotalwaysreceivingthe

support they need to manage their

symptoms which could include

breathlessness, fatigue, bone pain

or depression.

Overhalf(54%)ofpeoplewhodieas

a result of cancer were not receiving

DisabilityLivingAllowanceor

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:

Assessingpeoplesneedsand

providing them with a care plan.

Improvingthewaythathealth

professionals communicate with

patients by ensuring that timely

end of life discussions are held

with the patient.

Improvingtheinformationand

support available about this stage

of the illness.

Providingpeoplewithadvice,

guidance and information so that they

can claim any financial entitlements.

Increasingthehelpandsupport

provided by specialist nurses and healthand social care professionals working

in hospitals and in the community.

8 Macmillan Cancer Relief, The unclaimed millions, 2004


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Living with active, progressive and recurrent cancer

Though its great news that there aremore people living with cancer andits consequences, we mustnt forgetthat some people will be living with

advanced disease and the knowledgethat their cancer isnt curable.

Doctorsneedtomakesuretheirpatients are provided with the right

care and support towards the endof their lives. They need to askthemselves if they would be surprisedif their patient were to die in the nextsix to twelve months. If the answer is

no, they need to ensure they talk totheir patient and the patients carerabout end of life care and applyingfor financial support.

Professor Jane Maher, Chief Medical Officer, Macmillan Cancer Support

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12

Supporting people to help themselvesPeople living with or beyond cancer want to know how to look afterthemselves after a cancer diagnosis so they can return to normal lifeas 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:

Researchtoinformthedevelopmentof

a range of self-management support

that includes tools, courses and training

programmes for cancer survivors.

Consideringpeoplesself-

management needs in post-treatment

assessments and care plans.

Moreopportunitiesforpeopletoattend programmes such as

Macmillans Living with cancer

course and to join local self help

and support groups.

People living with or beyond cancer are seventimes more likely to say they find it difficultto do personal care tasks, such as washingand dressing, than people who do not havea long-term condition.10

9 Wilson P.M.(2008) The UK Expert Patient Programme: Lessons learned and implications for cancer survivors self care support programmes, Journal of Cancer Surviv, 2:45-5210 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, Cheshirediagnosed with testicular cancer in 2007

My cancer experience was really stressful as

Im self-employed and have had a lot of workworries. Ive finished treatment but the hardestpart about the cancer now is how it has affectedme mentally. Im convinced that every ache orpain that I get is the cancer returning. They toldme its been removed but its a constant fear.Ive read reports about nutritional therapy andwould like to find out more, but dont know whoto ask for guidance.


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14

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:

Manypeoplereturntoworkwithout

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 whodo return find their earning capacity

is permanently affected.

Returntoworkservicesforpeopleliving

with or beyond cancer are not high on

anyones agenda.14Occupational health

provision is patchy and limited to larger

employers;NHScancerservicesare

focused on treatment not return to work;

NHSrehabilitationservicesarefocused

on discharging people from hospital, notgetting them fit for work; Jobcentre Plus

services are focused on getting people

back into work, not job retention.

A2005surveyfoundthat50%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

Getting back to workOver three quarters of a million people of working age are livingwith or beyond cancer in the UK.11

A2007surveyfoundthatthoughfour

out of five employers were aware of the

DisabilityDiscriminationAct(DDA)

employment provisions, only one in five

considered cancer to be a disability.16

TheDDAaimstoendthediscrimination

that many disabled people face.

We believe the following will help

people living with or beyond cancer

get back to work:

comprehensiveinformationand

advice on how they can return to work

thedevelopmentandtestingofa

return to work model for people living

with cancer

providingaccesstooccupational

health services for people who work

in small or medium organisations or

who are self employed

greaterawarenessamongemployers

thatcanceriscoveredbytheDDAandthe obligations they must abide by

moreresearchintothebarrierspeople

face when they try to return to work.

11 Macmillan Cancer Support, Health and well-being survey, 200812 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)13 Cancerbackup, Work and Cancer: How cancer affects working lives, 200514 K Staley, Returning to work:cancer and vocational rehabilitation, Report of a scoping study for Macmillan Cancer Support, February 200815 Cancerbackup, Work and cancer: How cancer affects working lives, 200516 Simm C, Aston J, Williams C, Hill D, Bellis A, Meager N, Organisations responses to the Disability Discrimination Act DWP Research Repor t 410 (2007)


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Getting back to work

Neil, 51, Glasgow

Since my diagnosis of bladder cancer, Ive beenmade to feel totally unwelcome by my managers

at work. Ive gone from being one of the mosttrained in my team to one of the least. Ive takenvery little time off for my treatment and check-ups and Ive tried to be even more productive.But Ive got no support and no ones talking tome. I cant afford to resign, but thats what I feellike doing.

15


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The late effects of cancer treatmentChemotherapy, radiotherapy and surgery can all cause late side effectsof treatment. Late effects could include lymphoedema [a swelling thatdevelops as a result of an impaired lymphatic system], changes in bowelor bladder function or impaired fertility some years after treatment.

Problems relating to the late

effects of cancer:

Informationisnotroutinelycollected

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.

GPsandotherhealthprofessionals

do not always associate a late effectwith a past diagnosis of cancer and

consequently do not always provide

people with the support and

information they need to manage

these problems.

Somepeoplehaveverycomplex

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:

Introductionofrequirementsto

record the incidence of late effects

across the UK.

Raisinghealthandsocialcare

professionals awareness and

understanding of the impact oflate effects.

Informationandsupporttohelp

people manage their own problems

where possible, including information

about emotional and practical support

services in their area.

Specialistservicesforthosewith

complex problems.


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The late effects of cancer treatment

Too few health care professionals areaware of the devastating impact lateeffects of cancer treatment can haveon the quality of life of a person living

with or beyond cancer.

We need to put measures in placenow so that people who suffer thesometimes debilitating impact of

changes in bowel and bladder function,sexual relations, lymphoedema or otherlate complications of essential cancertreatments are identified, provided withappropriate medical and other

interventions, and are supported tomanage their own condition.

Dr David Linden,MacmillanGPAdviserforScotlandandNorthernIreland


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Helping survivors of childhood cancerThere are now more than 20,000 survivors of childhood and young personcancer in the UK.17 Every day 10 children and young people are diagnosedwith cancer.18 More and more are surviving childhood cancer, althoughsome will have to cope with the late effects of their cancer treatment.

Problems facing children,

teenagers and young people

who have had cancer:

Timeoffschoolfortreatmentand

recuperation can mean that survivors

of childhood cancer have reduced

employment or education opportunities.

Theymayexperiencegrowthand

development delays. Radiotherapy canaffect bone growth and delay puberty.19

Theymayexperiencelateeffectsof

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:

accesstospecialistlateeffects

services specific to children,

teenagers and young adults

flexibleeducationalprovision

innovativewaysofprovidingpost-treatment support, including

emotional support

parentsandguardianstobeinvolved

in post-treatment care and planning

dedicatedforumsforparents

and siblings

parentsandguardianstobebetter

informed of their statutory rights asworking carers.

The needs of survivors of childhood cancer are veryspecific. The effects of the disease are not only physicalbut also emotional, which can manifest into adulthood.Macmillan Paediatric Oncology Outreach Service Team,

NewcastleUponTyneNHSFoundationTrust

17 www.clicsargent.org.uk/Aboutus/Mediacentre/Keymessages18 www.clicsargent.org.uk/Aboutchildhoodcancer/Forsurvivors19 www.clicsargent.org.uk/Aboutchildhoodcancer/Beyondtreatment/Longtermside-effects20 Oeffinger K et al 2001, Chronic Health Conditions in Adult Sur vivors 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 daughterwas told she had a rare cancer. Shes been

through two operations and radiotherapy, andshes been left with physical scars. As parents,we found it really hard to support her with theemotional effects. There was no one in the areato support us, or her, and the only way forwardwas by doing all the research myself and thensetting 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 thesupport they were lacking, too.


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Caring for carersThe carers of people living with or beyond cancer need support too.38% of carers who care for someone living with or beyond cancerspend more than 30 hours per week caring for them.21

People who care for someone living

with or beyond cancer face the

following problems:

Caringcanaffectboththeemotional

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

Carersareentitledtoanassessment

of their needs by social services butmay not receive one. Or they may

have an assessment and then find

there arent any local services

available to meet their needs.24

Carersfinditdifficulttonavigatethe

system to get the help they need.

Manylong-termcarersareforced

to work part-time, miss out on

promotions or give up work altogetherto 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:

Carersneedtobeincludedinpost-

treatment assessments and care

planning, including assessment of

their own needs and how those needs

will be met through integrated health

and social care provision.

Carersandemployersneedtobe

better informed of the statutory rights

of working carers, including the rightto request flexible working.

Healthandsocialcareservicesneed

to meet the needs of carers as well as

people living with or beyond cancer.

TheNHSshouldprovidethemwith

regular health checks and ensure

carers can make appointments that fit

in with their caring responsibilities.

Carersneedmoreflexible,tailoredpractical 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 physicaland emotional burden.

Astrid Campbell, Macmillan Crossroads for Carers Strategic Partnerships Manager

21 Macmillan Cancer Support, Health and well-being survey, 200822 www.carersweek.org 1,997 declared carers took part in the Carers Week survey between February and March 200823 Macmillan Cancer Support, Health and well-being survey, 200824 Institute for Public Policy Research, Just care? A fresh approach to adult services, May 200825 Carers UK/ Leeds University, Valuing carers Calculating the value of unpaid care, 200726 www.carersuk.org/newsandcampaigns/shortchanged


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Caring for carers

Su, 46, Swansealooked after her husband Wyn for18 months when he was diagnosed

with cancer four years agoYou never stop being a carer. Even thoughWyn is back at work we still have to think aboutwhere we go on holiday and where and whatwe eat because of the long-term side effects ofhis treatment. In the early days following histreatment I had to force Wyn to go out alone.I had been constantly by his side for a year anda half and so it was difficult for him not to have

me around. I had to make him start drivingagain and help him find the confidence to go outby himself and become independent once more.


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22

What is Macmillan doing to helpcancer survivors?

Weareworkingwithgovernments

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


Weareprovidinginformationand

support through our information and

support services across the UK and

through our publications, websites

and national support helplines.

Weareprovidingcareandsupport

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.

Weareprovidingfinancialhelpandsupport through one-off grants and

benefits advice.

Weareworkingwithlocalpartners,

suchastheNHS,localauthoritiesand

the voluntary sector, to develop local

services for people living with or

beyond cancer.

Wearegivingpeopletheskillsand

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.

Wesupportcarersofpeoplelivingwith or beyond cancer by providing

them with information and practical

and emotional support.

Wearecommissioningresearchto

find out more about the needs of


We are working with local partners, such as

the NHS, local authorities and the voluntarysector, to develop local services for peopleliving 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 amnow a laryngectomee after surgery almost two

years ago. Its been a hard battle getting backto some sort of normality. Ive five allotments,and although Im driving my van and tractoragain, I still get breathless and have realdifficulty lifting heavy loads when Im gardening.My speech has returned but it can come out alittle gargled sometimes. People who dont knowme well have a problem understanding me.


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

Macmillan is lobbying governments in England, Scotland, Wales andNorthern Ireland to improve services for people living with or beyond cancer.

In England, Macmillan is co-chairing a

NationalCancerSurvivorshipInitiative

(NCSI)withtheDepartmentofHealth.

OneofthefirstactivitiesoftheNCSI

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

informedthedevelopmentoftheNCSI.27

TheNCSIaimstoprovidebettersupport

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.AspartoftheNCSI,

MacmillanisworkingwithNHSImprovement to pilot new models of

follow-up to provide better post-

treatmentsupport.NHSTrustsand

social care organisations will test out

new models of care for cancer survivors,

supportedbyNHSImprovement.28

All patients are individuals, but my

personal view is that most cancer

survivors are likely to want:

Toknowthattheyhavereceived

(or are continuing to receive) the

best possible treatment for their

condition to minimise their risk

of recurrence.

Togetbacktoasnormalalifeaspossible (but not necessarily the

same as before).

Toknowtheyhaveeasyaccessto

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.

Toknowthatanyrecurrenceof

cancer will be dealt with as

effectively as possible.

Toknowthattheywillbeinvolved

in decision making to the extent

that they wish.

Professor Mike Richards,

NationalCancerDirectorofEngland

27 www.macmillan.org.uk/documents/support_material/get_involved/campaigns/survivorship/survivorship_report.pdf28 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?

In Scotland, the publication of theScottish 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 sectorsand voluntary organisations like

Macmillan to make sure that the

Better Cancer Care strategy addresses

the needs of cancer survivors.

Nicola Sturgeon MSP,

DeputyFirstMinisterandCabinet

Secretary for Health and Wellbeing

In Wales, Macmillan has ensured that the

latest Welsh Assembly Government cancerstrategy,DesignedtoTackleCancerin

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 thatthe post-treatment support needs of

people living with or beyond cancer are

explored as part of the development of

the Standard.

Tackling cancer and improvingcancer 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,theNorthern

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 follow-up 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,NetworkNurseDirector,NorthernIreland


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Cancer survivors matterMacmillan wants the two million people living with or beyond cancer inthe 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:

Apost-treatmentassessmentandacare

plan for everyone who finishes treatment.

Appropriateservicestohelppeople

recover from the medical, practical and

emotional effects of treatment.

Regularassessmentandacareplanfor

everyone who is diagnosed with active,

progressive or recurrent cancer.

High-qualityinformationatkeystagesthroughout 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.

Toolsandinformationtohelppeople

support themselves.

Adviceandsupporttohelppeopleget

back to work.

Supportforpeopleexperiencinglate

effects of treatment.

Supportforcarers,including

assessment of their needs leading

to appropriate support.

Specialisedservicesthatmeetthe

needs of children and young people

surviving cancer.

Developingtheskillsofhealthandsocial

care professionals so they can provide

better support to cancer survivors.

Undertakingmoreresearchintothe

needs of people living with or beyond

cancer, piloting ways these needs could

be met and recording of data.

Involvingpeoplelivingwithorbeyond

cancer in the development of services.

Healthcare,socialcareandvoluntary

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 orbeyond 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.NHSservicesmustworkwithsocialcare

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 [email protected]

to find out more about Macmillan's work to

improve support for cancer survivors, visit

www.macmillan.org.uk/survivorship


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Cancer survivors matter

Alison, 45, Derbyshirediagnosed with breast cancer in 2007

Ive been through surgery, reconstruction, and

a hysterectomy. Im now on treatment drugs forthe next seven years and am suffering fromhorrendous side effects. The irony is that I haveto take a basketful of other medicines just tocounteract the effects of the treatment drugs.

My joints are painful and weak from the lack ofoestrogen in my body, and I sleep very poorlybecause of night sweats. In hospital they gaveme sleeping pills, but now Im an outpatient, myGP refuses to prescribe them. Im beginning towonder if the quality of my everyday life is worthsacrificing for these drugs.


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Two million people are living with orbeyond cancer in the UK. Macmillan

is here to make sure all of them receivethe help, support and care they need.

Ciarn Devane, Chief Executive, Macmillan Cancer Support


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Macmillan Cancer Support improves the lives opeople aected by cancer. We provide practical,medical, emotional and fnancial support, and pushor better cancer care. One in three o us will get

cancer. Two million o us are living with it. We are allaected by cancer. We can all help. We are Macmillan.

Macmillan Cancer Support89 Albert EmbankmentLondon SE1 7UQ

Tel 0800 500 800CancerLine 0808 808 2020

www.macmillan.org.uk

Macmillan Cancer Support, September 2008 MAC11578Macmillan Cancer Support, registered charity number 261017.

For further copies of this booklet,call us on 0800 500 800or visit www.be.macmillan.org.uk

Two Million Reasons

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