Wind-Cowie, M. & Salter, J. (2013). Paying the price. Demos, London

8/13/2019 Wind-Cowie, M. & Salter, J. (2013). Paying the price. Demos, London

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Getting to gripswith the financialconsequences ofcancer

PAYING THE PRICE

Max Wind-Cowie

Jo Salter


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PAYING THE PRICEMax Wind-CowieJo Salter


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Open access. Some rights reserved.

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Contents

Acknowledgements

Executive summary

Introduction

1 What are the costs of cancer?

2 The policy landscape

3 What do the experts say?

4 What can be done?

Notes

References


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Acknowledgements

First and foremost, we are grateful to Macmfor funding this report and respecting our conducting the research. At Macmillan, welike to thank Dan Rattigan, Laura ThomasRuth Carlyle, Hannah Shannon, Sarah Ro

for all their help.A huge thanks are also due to the extproject steering group - Johnny Timpson aGroup, Jayne Molyneux at Bupa, Katie Sch

Joseph Rowntree Foundation and Andrea sity of Bristol's Personal Finance Research

We would like to thank all those whothree expert roundtables, and the workshoof financial isolation after a cancer diagnosand August this year - this report is the sumand ideas.

At Demos, thanks to Ally Paget for hfirst workshop, Ian Wybron and Sophie Harranging the roundtables, and our internsHannah Ashley for their help at various staFinally, many thanks to Sophie Duder, Ral

Macpherson for their hard work on the pubof this report.

All errors and omissions remain solel

M Wi d C i

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Executive summary

9

A cancer diagnosis can cost an individual amonth. This places a huge financial burdenfamilies. It is a growing issue that needs to

This report builds on prior research uUniversity of Bristol and Macmillan Canceextensive expert and stakeholder engagemout, and begin to address, the financial impindividuals and families.

Our recommendations are not focusegovernment investment. NHS and central are important to resolving the financial prediagnosis can create and exacerbate but trole for civil society, employers and financi

too. We have been led by the experts in deinterventions that would help to address ancancer. But alongside these specific recommbetter awareness, across stakeholders, that di d d d d f


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in the UK (including NHS Scotland, NHS Wand Social Care in Northern Ireland).

Government

Executive summary

1 The Department of Health (DH) in England relevant agencies governing health in the devopartnership with other government departmeupdate their existing national cancer strategiecomplementary social strategy for cancer, whaccount the wider social and financial implicaduring illness and treatment, and following re

2 Requests forflexible workingfrom people expeillness that is temporarily preventing them frobe granted the same legal status as requests fr

carers. Currently, anyone can apply to work flparents and carers have the legal rightto requehas in the past called for flexible working to bemployees, making the right to request univerwith long-term conditions, this may require so

the request process, which can currently take Local and national government could set the leading by example, setting the benchmark fofriendly employers.I d f i i k l i il


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term and chronic conditions. Opportunitiesuch as a single access point for both systembe explored.

The NHS

1 A financial health check should form part oafter a diagnosis has been received (for any

just cancer). The Welsh Governments 2012specifies that everyone diagnosed with canroutinely referred to financial advice servicreplicated in other UK countries.

2 Free patient transport and local taxi serviceto meet the needs of a wider group of patieserved by it, including those receiving treat

or episodic conditions such as cancer. Thesgenerally only available to people who are those with physical disabilities that make ituse public transport (eg Dial-a-Ride servicescheme within London).

3 Make chemotherapy and radiotherapy availablcentres, reducing the need for people to travhospital. While this will not be suitable forshould maintain awareness of the diverse n

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with local car shares), and barriers to doingaddressed. Health and wellbeing boards cofacilitators in this process.

7 The NHS Mandate which is currently outshould renew its focus on increasing employmen

NHS in England, including setting an outcomagainst which this can be measured.

Civil society

1 Charities and voluntary services providing iguidance on financial health should be colopossible, with existing healthcare providers iaccessing advice easier for patients.

2 Financial information and literacy charities

to be included on local health and wellbeing boaimportant links that exist between financialhealth.

Financial services

1 There should be better training for frontline staffreferral rates to specialist teams, encourage

Executive summary


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3 Invest in advice around the risk of financiashort-term, temporary illness such as cancepension providers should explain clearly to erisk of income loss due to cancer is and whprotect themselves and their families.

4

The Government should work with the insorder to develop a kitemarking scheme of mthe income protection industry, similar to tstandards that were introduced by the Penworkplace pensions. Such a scheme wouldpartnership with the Treasurys Simplified would set a standard model for income procompliance, income protection could then optional opt-in to the new National Emplo(NEST) workplace pension scheme2 in oproportion of the workforce who are prote

financial risk of ill-health and to maintain sincome protection sector.

Together, these interventions if impleconstitute a concerted strategy to tackle th

cancer and help improve our systemic and preparedness for the risk of a diagnosis. Thliving longer, but there is also an increase iand survival rates. That is all good news. T

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Introduction

15

We are used to viewing cancer as a healthcthis is the primary lens through which indifaced with a diagnosis regard cancer. Butmakers and those tasked with organising penacting regulation of private sector provisimportant and growing, concerns. The soccancer is only just beginning to be fully undiagnosis and treatment have improved (animprove) these factors will become more an

individuals, families and society as a wholeResearch from Macmillan demonstra

million people will be living with or beyonrepresents a doubling in the number of suryears. This is obviously a cause for huge ce

result of breathtaking advances in diagnosit also presents significant challenges for insurviving cancer and for policy makers.

One of these challenges is the extra fi


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obviously creates huge challenges and stress dwhich a cancer patient is accessing treatment.hole in peoples finances one which can outand present a substantial gap in the long-termfamilies and individuals. Furthermore, there i

many areas of our lives in particular insuranwelfare services have not caught up with thecancer as a survivable rather than a terminal iof cancer as a terminal condition persists, desadvances mentioned above, so many services towards addressing the challenges common toand many former cancer patients continue to penalties long after finishing treatment.

What is more, we need to see cancer patgoing through periods of extreme distress andrequire our support in order to ensure that th

emotionally as well as physically. The financiasense of powerlessness that can accompany a contribute to the stress of treatment and to into cope financially. Referring to cancer patiencustomers as some financial services with g

is one example of institutions reinforcing the diagnosis undermines capacity. It does not hapossible, solutions to financial problems facedshould focus on empowering these patients toh l

Introduction


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relationship including banks, insurers, emcompanies, housing providers and landlordconcerted effort from all of these and moreto the financial wellbeing of all people whocancer.

The report is based on extensive deskincluding a review of the academic evidencdrivers of costs of cancer and on extensivstakeholders via a series of expert roundtabMacmillan convened three expert roundtabfrom frontline expertise about what best prwhat might be done systemically to reduceimpact of cancer. These were themed by sethe financial services industry, representativsurvivors, and leaders from the NHS and pproviders. Together we have reviewed the e

explored what measures might be pragmattackling the cost of cancer to individuals an

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1 What are the coof cancer?

19

In February 2012, the University of BristolResearch Centre published new research, cMacmillan, quantifying the average financpeople with cancer, through loss of income

expenditure.4The top-line finding from this researc

(four out of five) of people with cancer hadburden, at an average financial loss of 570single loss in monetary terms came from lo

cent of people surveyed, at an average loss while the most common additional cost inctravel costs to and from outpatient appointhose surveyed, at an average cost of 143 psources of financial strain included additio

costs (54 per cent of those surveyed), especpaying for help around the home and gardhave a direct impact on peoples financial ssense of wellbeing and quality of life, with di ti t l lik l th th

Wh t th t f ?


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Macmillan grant to help her cover her hecould not have managed.On top of her reduced income, Lau

costs increased:

Her electricity bill increased by 100 for twas having chemo, as the treatment mad She spent an additional 400 on clothes a

steroids and her inability to exercise causeShe also needed bras and swimsuits suitab

She needed two wigs, and although she re

voucher from the NHS, she still needed ancover the cost.

Parking at Lauras local hospital cost 1.2a reduced rate, but the costs added up as 40 times.

Unsurprisingly, Laura found herseusing her credit card to meet her basic needShe had already been in debt before she wdebt more than doubled once she was una

100 interest each month, causing her signAs a result of these financial pressurto work before she was ready; her health dhad to stop working again. She is now pla

k h l h h

What are the costs of cancer?

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putting any kind of career on hold. I havaround me buy their first house, get promtravelling, etc, whilst I have been stuck li

feeling unable to do anything!

Key findings from the report Cancer

Price Tag

There are several key findings from Cancerpose particular problems for policymakersburden of cancer is not evenly spread. The

burden of cancer was less than 13 a monthpeople, with 17 per cent incurring no extra even gaining financially. Yet, for another 25incurred were more than 489 a month, anfinancial impact (combined income loss an

cancer for some individuals ran into the thexperienced a particularly high overall finato be:

21

those diagnosed with certain types of canc

leukaemia, and testicular and brain cancerexpensive) parents with dependent children (the overa

was higher for single parents who incurredh h f ili h d hi h



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providing childcare support or free crches inwould particularly benefit single parents) increasing uptake of income protection amon

and ensuring that income protection policies people with cancer

making it easier for people with cancer to reapayments with their bank or building society

extending compassionate leave for partners awho are ill or undergoing treatment

providing specialist help for people with cancwhen they are ready to do so, to improve their

in the longer term, and alleviate their immedia


One challenge facing policymakers that Bristol research is the low use of specialist finway of coping with the extra costs incurred. H

cent of people surveyed had turned to one or funding to help pay their additional costs or cincome, most commonly through savings (39 income (38 per cent) with most coming frombenefits rather than earnings followed by co

per cent) and informal loans or gifts from famper cent). One in ten people said that they hato help pay extra costs.

In contrast, it was extremely unusual for(

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financial support often it came from friencontacts, such as fellow patients, despite evintervention at the earliest possible opportbiggest impact on an individuals financial Interviewees wanted to be able to access alinformation they required from one sourcewebsite). The idea of a financial health chediagnosis also appealed to many people.

In the absence of financial assistance interviewees highlighted two key factors thmitigate the total financial impact of cance

understanding employer and support from

Implications of these findings

The Bristol research throws up several dile

influence the type of response needed to tathat people with cancer are currently facinglevel of universality for financial support? Ware best placed to provide this support: puorganisations, or charities? And how do we

is marshalled effectively, rather than tacklinthe problem?

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that people faced was travel to and from hospThe NHS Low Income Scheme reimburses trEngland, Wales and Scotland, but only to peoincome or in receipt of certain benefits (such aCredit).10Although not all forms of financial means-tested in this way, in an era of straitenemeans-testing is likely to become more ratherand there is a valid argument that financial suwith cancer like other financial resources at the most vulnerable. The people intervieweresearchers felt that it was unfair to limit some

assistance (such as grants) to people on lowerwith higher incomes were incurring exactly thshould be equally entitled to help.

People whose income or savings disqualmeans-tested financial assistance can best be h

ways, such as by increasing awareness and upproducts like income protection and critical ilpossible downside of differentiating by incomdeveloping a multi-tier system of financial suphigher earners being encouraged to opt out o

system, and to rely on the private sector for inillness or disability, and those on lower incomthe benefits system, in the absence of private employers, for example. This is a tricky politi

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This points to the need for a multi-sespanning the public and private sectors, ascharities such as Macmillan. Given the natillness that cuts across the boundaries of agstatus the benefits system will not be the financial support for all people, and there ithat other systems and services will be invo

There is a risk of a fragmented response

Because of the varied experience of financi

with cancer, and the multiple agencies likeaddressing this, there is a risk of developinresponse that tackles different aspects of thrather than in a coordinated and joined-upconsider whether this is the best way to allo

whether some form of overarching structurnecessary to unite the different activities.

There may be a case for strengtheninhealth minster for public health (since the reshuffle, this is Jane Ellison MP) to raise t

within the ministerial portfolio. The DH pfor cancer in 2011, but focused primarily onfor cancer, rather than social issues. An updcomplementary social strategy for cancer, m

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for cancer patients, or for a more universal ofoffer help specifically for cancer is simply thatmost prevalent long-term illness that people aencounter during their lives one in two of udiagnosed with the disease by 2020. A policy at the costs associated with cancer would thusproportion of the population. However, it is ucommissioners, for example, would be interesservice exclusively for cancer patients when a patients could benefit from it equally. These wdilemmas that we put to the roundtable atten

thoughts are presented in chapter 3.

W at a e t e costs o ca ce

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2 The policy land

There is a range of support for cancer patieprivate sector services, much of which is beCoalition Government. A brief outline of twhich cancer patients currently access serv

Welfare reform

The Coalition Government is committed toreform of the welfare system, with no bene

untouched in many cases resulting in bengenerous in real terms. The chancellor has othe benefits bill further in the 2013 spendannounced that the DWP would have to fin9.5 per cent, including through implement

benefits entitlement, which came into forceThe most important change for peoptime limit placed on claims for Employmen

Allowance (ESA), which provides financialh bl k b f ill

The policy landscape


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The process of claiming ESA will also bpeople with cancer, allowing them to submit aGP in support of their claim, rather than haviface-to-face assessment to determine their fitnlighter touch process will, in theory, make it with cancer to claim the benefits support theywithout the stress of a back-to-work assessmenof sanctions.

At the same time, the Government is grathe Disability Living Allowance (DLA) with aIndependence Payment (PIP). The purpose o

offset the extra cost of living with a long-termor disability, but the qualifying rules and assePIP are stricter. For example, to qualify for PImust have needed help for at least 3 months, need it for the next 9 months a particular pr

with forms of cancer whose treatment regime months. Rather than being assessed on the netheir condition, applicants are required to undof their ability to carry out day-to-day tasks, sdressing, cooking and budgeting, independen

figures show that around 500,000 fewer peopPIP in 2015/16 compared with the number whreceiving DLA.13All in all, this raises the bar fand leaves more people at risk of not being ell f h h l bl

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people who are simply too ill to be able to property. In March 2013 the Government passed leg

rating of most benefits and tax credits at 1 benefits rises will not keep pace with inflatdifficult for people to stretch their benefitscost of living.

Cuts to legal aid ensure that it will no longappeals against welfare decisions or debt premaining pot is also now means-tested, refurther.

The combination of multiple changes to thresulted in increased demand for advice sermany advice and legal aid charities have beto meet this demand with fewer resources. with cancer with fewer places to turn to for

managing their financial situation.

Interviews carried out for the Bristol many people with cancer found the benefitand difficult to navigate and they resente

attached to claims, particularly means-testikind of financial support should be availab

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target for this group.14

This presents a challencancer getting the right support to get them bThe Work Programme is aimed at the lo

unemployed, and so only captures people whwork before their diagnosis, and have slippedlabour market as a result of it. Employers playhelping those in work when diagnosed with cto work after an episode of cancer, if they are Bristol interviews highlighted that having a syemployer was one of two key factors that helpcost of their treatment and illness. Conversely

between employer and employee, during and acts as a barrier to continuing in or returning people with cancer.15

Yet, support to help people with cancer in work, including specialist vocational rehab

poor. Macmillan research findings show that work services are accessed by less than 2 per ccancer and over three-quarters do not access ato do with employment or work.16Although afor work-related support and rehabilitation ha

(such as the three-tier model of the National CSurvivorship Initiative17), which has proven toimproving work and health outcomes, and coprogress has been made to improve vocationa

h d b

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In November 2012, the first mandate Government and the NHS CommissioningEngland) was published. The Governmentpriority area, that it expected to see progrepeople with health conditions to remain inaddition, there is an indicator on the emplolong-term conditions in the NHS Outcomealthough not in any other key accountabilithe Clinical Commissioning Group Outcomand there are still few incentives in the NHwork as a positive health outcome.

Part of the problem is that in all UK work policy is the responsibility of separatedepartments, which tends to prevent more employment support for people with long-conditions. More joint working and joint o

would help improve outcomes.22

One important step towards this kindwas the announcement in January 2013 thawould introduce an independent health anand advisory service in 2014, based on the r

the Black and Frost review of sickness absethe Fit for Work service pilots that ran betwPeople will be referred to the scheme after leave for 4 weeks, unless they are already cl

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Reforms to social care

Local authorities are experiencing unprecedenbudgets, and social care is no exception 2.wiped off care funding since 2010, which has restricting eligibility criteria for state-funded clow or moderate needs and by closing servicethis is to increase the pressure on informal carincreasingly becoming a safety net for those wfor state support, and unable to afford private

Though social care faces a grim future, nis bad, and many of the reforms currently undopportunities to expand the range of outcom

and health services together can support. Newlegislation (the Care Bill, which is currently pparliament) contains encouraging signs of a mholistic care extending preventative care anwith lower levels of need, addressing the need

relatives, and shifting the emphasis away fromdefinition of care and support to a wider senswithin which there is more scope to address thof wellbeing.

Alongside the wellbeing agenda, anothe

drive towards personalisation in social care anlimited extent, health care. Personalisation aimindividuals as much choice as possible over thsupport they receive, underpinned by better id i E di h i i l f

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drawing up joint strategic needs assessmenpopulation and developing joint health anbased on these. Both were brought into beSocial Care Act 2012, shaping the way in ware delivered in England.

Together, these new structures for placommissioning health and care services shoopportunities for area-based strategies to swith cancer, and help to coordinate health something that will help allay the tendencypurely medical problem, rather than a resp

between health and social care.The UK Government has set itself a t

grate heath and social care in England by 2projects around the country announced be2013.26Voices across both sectors have bee

years, though there is some scepticism overwill be successful, given that no additionalprovided to facilitate it.27

Meanwhile, the devolved regions are paths towards better integration of health a

through Transforming Your Care in NorthIntegration of Health and Social Care Bill Welsh Health, Social Care and Wellbeing S

Alongside moves towards integrationf f h



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five domains of the NHS Outcomes Framewothat individual networks will only look at onepathway, unlike their predecessors.28

Finally, financial challenges are ubiquitohealth system, and have an impact on individand services supporting them. Nevertheless, tchanges described above mirroring reformsallow for a more holistic service offer that brincarer support, generic financial advice, housinaspects of support under the broad heading w

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3 What do the ex

Demos and Macmillan convened three expthemed by sector in order to better undelaid out above and to begin working towar

problems raised. The purpose of these rouninvolve experts in this discussion and to enrecommendations be targeted, pragmatic a

Attendees were presented with a summary asked to consider the following questions:

1 From your perspective, how could some ofaddressed? What types of organisations are

2 How will current policy changes affect the assistance?

3 Should financial support for cancer be unito people on the lowest incomes, groups vucosts such as single parents)?

4 How cancer-specific should this response bWhi h i i b l d d l

What do the experts say?


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7

How do we avoid a piecemeal approach to theneeded to unify the different initiatives (eg a cstrategy, strengthened ministerial responsibili

The discussions each lasted for an hour summary of each one is presented below. Thegroups also came up with sector-specific recomsome general points that cut across sectors ansociety and central government. These propoof this reports recommendations laid out in

Roundtable 1 financial services

Demos and Macmillan brought together reprfinancial services industry to present them witposed to individuals with a cancer diagnosis a

best practice looks like and what might be doexperiences of financial services. A key themeduring this session was awareness among custThose receiving a cancer diagnosis are often ulikely financial impact, as are their banks, whihelp them prepare and unsuited to mitigating

The role of frontline staff

A i h i hi di i b h

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staff are embarrassed or panic when presewho reveals their diagnosis. As one contrib

The service required is often basically the same as wtheyre likely to be made redundant but staff in bawith redundancy whereas a cancer diagnosis is a scoften dont know what to say.

The point was made that many of thein referring cancer patients to the approprirecognising their financial vulnerability a

cancer. For example, very similar difficultiefrontline understanding and preparedness in the Royal College of Psychiatrists work customer experience.29

There is also a question about accessi

with which individual customers are able toservices while undergoing treatment. For edifficult for people to access their banking because they are in hospital, or have a loweinfection) and even online banking can be for inpatients. Although the British Bankerhas recently produced guidance for how bawith powers of attorney, as staff often lack system works it can be difficult for attorney

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group to address many of these issues but itsetting up and drafting new guidelines for staBanks need to work together to ensure that thtraining and support for frontline workers in referrals to appropriate specialist services hapcustomer reveals a cancer diagnosis.

These issues of frontline understanding obligations and their banks existing offer to fvulnerable customers such as those with a diaissue when it comes to managing arrears. Arreoften driven by bank IT systems a missed p

automatically triggers a letter from the bank who approach their bank or provider for helpwait until they are in arrears. This not only cresecurity, but also misses an opportunity for eaand reduces the range of options that people

they hit this point.Many cancer patients who have tried prtheir finances have faced a financial services inengages with people falling into financial trouentirely retroactive way. This causes unnecessaterm damage to individuals credit and borrowis required is a proactive engagement by finanwho recognise the likely long-term and short-cancer diagnosis and deal with customers app

h l f d d l

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are able to devote considerable emotional etreatment and recovery but the financial jcancer is also important and poor financialto the long-term financial impact of a diagncancer itself.

It is important to remember that not

shock is immediate some factors (eg highpremiums for things like travel insurance) future. In addition, missed payments due tof a cancer diagnosis, or anything else) havon a persons credit score, and so can affec

credit card or loan (including a mortgage) addition to the missed payment charges thstraightaway. As there is a significant lack ocredit scoring, many people are not aware potential ways to mitigate the impact of a c

longer term.It is possible, for example, for a bankclients account explaining the reason for athere is evidence that this makes a real diffebanks and other companies deal with defauof people explaining financial problems afthan preparing for them in advance, but mprovision of information by banks and finaproviders would encourage individuals to d

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likely to be. While some large employers haveresources staff in the range of issues likely to bcolleague with cancer, most are not trained inemployees feel uncomfortable discussing thei and indeed their personal health with thehighlights the potential need for intermediary

by the employer but distinct from them. The insurance industries are well placed to offer suespecially well in advance of a potential diagnfinancial services providers can be let into busemployer in order to develop individual and d

relationships with employees engaging withfinancial and risk planning, without employeeis an ulterior motive for being given such advimportant role for such providers in helping iunderstand their risk of cancer growing wit

as we live longer and experience more lifestylhelping them plan for the financial consequenSimilarly, trades unions which are acti

workplace, but distinct from employers cousource of information and advice for employecancer diagnosis. Some of the big unions alrefinancial advice. For example, members of Unfrom a free financial review by an independenadviser,30 as well as a range of other financial

h l l h

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information and support to people with capotential to expand the reach of advice at kjourney building, as it does, on the lived behaviour and priorities when receiving a c

It is unrealistic to expect most peoplefinancial advice in order to help them plan

diagnosed as noted above the priority, righealthcare. But building on healthcare conthe relationship with pharmacists can hesupport, advice and information without inHowever, such schemes are expensive, and

such as Macmillan and Citizens Advice areway of addressing this bearing in mind thdeficit in expertise and frontline training wsector, which was flagged up in the roundtfinancial services providers to contribute to

healthcare providers, whether financially otraining by sharing resources, or running texample. This would be an investment in cresponsibilities as well as an upskilling of tbase helping to alleviate their staffing dif

It is also important that wherever posand advice services are colocated with healis important for two reasons it reduces thactively to seek out advice and guidance by

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risks creating millions of people who experienfinancial disadvantage as a result of diagnosiscustomer dissatisfaction and undermine the fiindependence and robustness of the British p

There are a number of limited interventfinancial services industry should enact in ord

of cancer for their customers and improve the

Train frontline staff in banks betterto improve respecialist teams, encourage earlier interventiocustomer experience and outcomes to people

other long-term conditions. The FCA should are providing appropriate levels of support towith long-term conditions, including cancer. Tnot need to be cancer-specific, though specialbe paid to cancer, given its prevalence.

Implement better systems for people to delegatemporarily during illness or treatment. This wliving with cancer to take a step back from mafinances temporarily while undergoing trereduce the overall stress of dealing with the im

Invest in advice around the risk of financial shshort-term, temporary illness such as cancer.Ipension providers should explain clearly to emprisk of income loss due to cancer is and what t

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like and what might be done to improve extheme that emerged during this session wainformation, the relationship with employewelfare state.

Availability of information and advice

The charitable and voluntary sectors alreadguidance to many thousands of individualsstruggling with the impact of a cancer diagthings that could make a significant differe

and provision many of which revolve aroprivate sector providers might work with thaccess and sign-posting.

One effective measure, already triallebe colocating financial and health advice s

by placing financial advice services within hospitals. This approach has worked partictrialled in Wales where Macmillan advisefinancial impact of cancer and measures torisks) have been incorporated into multiditeams. This allows a holistic approach to cafinancial implications to be built into trefrom the offset. Colocation also offers patieand guidance without requiring them activ



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given the prevalence of the condition, this waroundtables to be an imperative that few busito ignore. The recommendation above that finproviders should invest in upskilling their cusfunding for advice and training offers the potproblem.

Return to work

Several participants in this expert roundtableexperience of helping to facilitate the return t

survivors, either in their role as employers or asupport and guidance that helps facilitate retuThis is a crucial area of concern for the long-thealth of those cancer patients who are able tofollowing treatment.

Employees and their employers may feethe process of returning to work after a perioda need for more flexible models that allow bothe water before jumping straight back in to previous hours (whether full time or part timerecovery is an uncertain process. Too often, threturn full time immediately after an all-clear psychological impact of having been treated fongoing occupational health needs that a can

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dose. Christmas tends to be a quieter, mocompany as well and this coupled with made it a pleasant time of year to retur

I had the best part of six months offhaving chemotherapy. I returned to workinitially doing some afternoons, while sti

in the mornings.My company had been extremely s

my illness, ever since my diagnosis. As somy illness they advised me I could take aneeded, while remaining on full pay. Du

uncertain time, it was one less thing to wmy salary would continue to be paid, anreturn to once I was fit and ready.

During the course of my illness I mwith my employers, and a phased return

discussed with the human resources depaalways the same: it was up to me when I monitor the number of days and hours I try to take on too much. Upon returninghours and days up, until I was back up tapproximately six to eight weeks after rec

I really valued being able to be in worked psychologically as well as physireturning to an office environment after

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This model accounted for up to a fifth of sickin Norway.34

Having the option to take part-time sickflexibility over employees return to the workthose with fluctuating capacity to start rebuildhealth as soon as possible and creating the sp

understanding of recovery. An additional benof the flexible and negotiated frame in which occurs, employers and employees naturally haholistic conversations about an employees hetional needs building understanding. Evalu

model suggest that it has a variety of positive employees and employers. One study found tmusculoskeletal disorders who took part-timetime sick leave (and were still working part-timhaving better general health and health-relate

In another survey of Finnish employers and eused the system, 76 per cent of employers andemployees felt that part-time sick leave had bereturn to work process, and 73 per cent and 8ively felt that it helped to prevent people fromterm ill or disabled.36

Flexible working combined with either por income protection would help to reduce sigincome loss experienced by cancer patients an

l h l h d

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culture so that requests are granted in a widsituations (eg from adult carers, or those inrecovering from an illness). Promoting sucmay require legislative change not to enfcarers and people recovering from fluctuathealth but to grant their requests the same

consideration currently afforded to parentscompel employers to consider carefully andrequests from employees who have either rthemselves or are trying to balance caring fcontinuing in work.

Case study 3: Lindsay37 the strug

caring responsibilities

Lindsay is a mother of two in her early

When dad was diagnosed with bowel canto the core It was hard for us all, but awhole family rallied round to care for himwho was his full-time carer.

Family life carried on as normal adiagnosed with breast cancer. Now I wasand could only work part time because ofappointments they had between them.

Wh d I d



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emotionally and financially every day to he does this seem fair?

Accessibility

Experts from the coal-face of the charitable an

strongly backed the notion of improved policdelegation of responsibility for financial serviduring cancer treatment. One contributor poi

People may have issues leaving the house or using the t

their illness or otherwise), which increases the risk of ththeir finances and entering a financial spiral.

The point was also made that it is particpeople with cancer to deal with automated tel

whether of banks or utility companies. Such scustomers into a very rigid and narrow set of unlikely to be a specific one for those wishingillness and its impact on their finances, and sochoosing the general option to speak to an adsocial tariffs are in place to alleviate the financancer patients these tariffs can be difficult tocompanies should identify easy routes for cuscomplex issues (health related and non-healthd i di l b idi i h i l

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According to participants in our expeincreasing number of private landlords arehousing benefit, which leaves people in theat risk if they are diagnosed with cancer, anhousing benefit temporarily while they aresame time, they may be hit by the withdraw

subsidy. Moving to another property may noption, and adds to their stress at a time whundergoing treatment or recovering from alack of understanding in the welfare systembetween a circumstances-driven, short-term

by the above example) and long-term engabenefits system leaves cancer patients unnevulnerable and at risk of acute financial str

There is also a significant problem wibureaucracy involved in accessing benefits

all of the hold-ups in accessing disabilitydelays in health professionals confirming ain the relevant paperwork (there are wider processing times it is the responsibility owith these). Medics tend to have a very narview of the impact of illness, so there is a cresponsibility for signing people off ill to nworkers. This would relieve some of the bufalls exclusively on doctors, particularly giv

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huge delays in accessing funds and be a sourccancer patients. Welfare and healthcare manahow their infrastructures can be more joined-utowards a single gateway for claimants.

Key recommendations

1 Requests forflexible workingfrom people expeillness that is temporarily preventing them frotime should be granted the same legal status a

parents and carers. Currently, anyone can appbut only parents and carers have the legal righso. Local and national government could set tincluding leading by example, setting the bencancer-friendly employers.

2

Charities and voluntary services providing infguidance on financial health should be colocawith existing healthcare providers in order to advice easier for patients.

3 Introduce a system ofpart-time sick leave, similused in Scandinavian countries (such as in FinRegular conversations between employer andworking patterns could also be used as an oppany financial issues.

h G h ld h

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7 Utility companies should identify easy roucomplex issues like cancer, by providing eiwell-directed advice lines or a quick, easily option on their automated service lines.

Roundtable 3 NHS and governmenDemos and Macmillan brought together reNHS and the Government to present themposed to individuals with a cancer diagnosbest practice looks like and what might be

experiences. A key theme that emerged durthe way in which costs impact on cancer pathe Government and public services can pl

Transport costs

The cost of transport and parking is thadditional expense faced by cancer patientsignificantly to the overall cost of cancer. Bdepending on what kind of diagnosis a perkind of treatment they undergo and on whthey live.

For example, London has its own pubmechanisms, and so the costs of travel are n

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hospital car parking (eg parents of children wpeople claiming means-tested benefits), but thdisparate and difficult for individuals and famBetter explanation of entitlements is needed ithat all those who should benefit from free pa

Hospital patient transport is available in

not always at the time that patients need to ushours), and so needs to be made more flexiblmodel (108 free taxi journeys a year for those conditions or disabilities) is an example of hoalised and practical public transport scheme c

The idea behind all of these schemes is that thfor people to incur costs in the first place wtrying to reach them with financial support af

Another way of reducing travel costs is tfrom acute settings into the community or e

through the use of virtual wards, and phone oThis is possible for some cancer follow-on supso for chemotherapy and radiotherapy.

Universal versus restricted support

Entitlement to means-tested benefits (signallialways been the standard way of assessing finand ensuring that funding is targeted at the m

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third sector (with crches in hospitals citedgood example).

The primary barriers to partnership ware considered to be cultural rather than or regulatory challenges. One opportunity working is the recent creation of local heal

boards, with responsibility for overseeing pand spending within localities. By their verbring together clinicians with managers, locharitable and voluntary organisations in oresources. Local health and wellbeing boar

local financial advice bodies in recognitiorelationship between ill-health and financiaorder to ensure that every contact counts wellbeing is central to public health planni

Most often what is needed at the time

generic financial advice, which could be ofInReach teams (eg Citizens Advice or Macwithin acute hospitals offering drop-in seadvice). Hospitals and GP surgeries shouldcolocate with voluntary sector providers inpatients in need of advice and guidance are

easily and without having to make specific



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3 The NHS needs to do more topromote and afinancial support schemes, such as the Low In

4 The Government should help incentivise empreturn-to-work support following an illnesssaves the Treasury money.

5 There are more ways in which theNHS can

partnership with other organisations to tacklwith local car shares), and barriers to doingaddressed. Health and wellbeing boards coin this process.

6 The NHS Mandate which is currently out

should renew its focus on increasing employmenNHS in England, including setting an outcomwhich this can be measured.

7 This group also echoed the previous groupthat the criteria for routinely grantingflexib

extended to people experiencing illnesses sumay temporarily prevent them from workin

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4 What can be do

There are already a number of schemes in poffset some of the extra costs imposed by cfrom the NHS Low Income Scheme (which

of travel to and from appointments to peopto dedicated insurance policies for people wwith long-term conditions. For example, Bincludes access to a dedicated oncology suptrained counsellors. Many financial service

critical illness cover, which covers many forproblem is not necessarily that suitable pronot exist (with exceptions, such as insuranwho face high premiums, for example becaillness) but that people are not accessingwhen they are, they are only helping some

time (eg people on low incomes, younger pwork), or are helping at the wrong time (to

This points to two things the need k ( h l d

Key lessons

What can be done?


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Key lessons

1 In the same way as society needs to be preparpopulation, at the same time we also need to bsituation where the number of people with cabut at the same time more and more people are lbeyond cancer. Many services are still dealing w

short-term, terminal illness which is increasbut this affects the type of financial support th(short-term as opposed to long-term, for exam

2 Low financial capability across the whole poputhis problem linking up with those providin

education will help to embed the idea that precosts of unexpected ill heath is something thadoing.

3 Information and advice needs to go to people, rathpeople to go to it (this links to lack of financiso we should think more creatively about wheoffered (through employers, pensions providepartnerships).

Sectoral recommendations

Government

1 The DH in England as well as the relevant ah l h i h d l d i i hi

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with long-term conditions, this may requirethe request process, which can currently taLocal and national government could set tleading by example, setting the benchmarkfriendly employers.

3 Introduce a system ofpart-time sick leave, si

used in Finland since 2007. Regular conveemployer and employee about working patused as an opportunity to discuss any finan

4 The UK government should ensure that pebecause of a cancer diagnosis are eligible to

from the new Health and Work Assessmen(HWAAS). The HWAAS should also routisources of financial advice and guidance.

5 The DH and DWP shouldset up a joint woremployment and health, with the aim of lookfor shared saving between the two departemployment outcomes for people with lonconditions. Opportunities for joint workinaccess point for both systems, should also b

The NHS

1 A financial health check should form part o(

What can be done?


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3 Make chemotherapy and radiotherapy available icentres, reducing the need for people to travel hospital. While this will not be suitable for allshould maintain awareness of the diverse needundergoing treatment national chemotherapshould attempt to treat patients locally where

order to mitigate transport costs for patients.4 The NHS needs to do more topromote and appfinancial support schemes, such as the Low Inco

5 Continue and develop the National Cancer InformProgramme paid for in part by a contribution

services providers in order to ensure that finprovided at natural contact points for patient6 There are more ways in which theNHS can wo

partnership with other organisations to tackle with local car shares), and barriers to doing thaddressed. Health and wellbeing boards coulin this process.

7 The NHS Mandate which is currently out foshould renew its focus on increasing employment aNHS in England, including setting an outcomewhich this can be measured.

Civil society

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and deliver better customer experience and

with cancer and other long-term conditionensure that firms are providing appropriatetheir customers with long-term conditions,This training does not need to be cancer-spattention should be paid to cancer, given it

2 Introduce better systems for people to temppaymentsduring illness or treatment. This wliving with cancer to take a step back from finances temporarily while undergoingreduce the overall stress of dealing with the

3 Invest in advice around the risk of financiashort-term, temporary illness such as cancepension providers should explain clearly to erisk of income loss due to cancer is and whprotect themselves and their families.

4 The Government should work with the insorder to develop a kitemarking scheme of mthe income protection industry, similar to tstandards that were introduced by the Penworkplace pensions. Such a scheme wouldpartnership with the Treasurys Simplified

would set a standard model for income procompliance, income protection could then optional opt-in to the new NEST workplac

d b h f h

What can be done?


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There is a role in meeting these challeng

society from government itself to employersservices institutions to civil society. We all neereducing the costs of cancer and taking forwawill alleviate the problems faced by individuathe longer term. None of the recommendation

massive additional provision of costly servicesfocus on reforming and redesigning what is aorder to protect people from risk, mitigate imfinancial burden of sickness. There are benefiapproach for employers, financial services, go

individuals themselves therefore, all must pjourney to a less costly and less stressful expethe 50 per cent of us who will receive a diagno

Notes

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Notes

1 D Leighton and T Gregory,Reinventing the Demos, 2011.

2 The Pensions Act 2008 placed new duties oprovide access to a workplace pension scheto help them save for retirement, making pout rather than opt-in for most employees.established as a public pensions provider femployer does not offer an occupational p

smaller businesses. See www.nestpensions.

3 Macmillan Cancer Support, Cancers HiddeRevealing the costs behind the illness, London:Support, 2006.

4 Ibid. Researchers carried out in-depth intewho had been diagnosed with cancer aboufinances had been impacted by cancer, and

Notes


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8 DH,National Cancer Patient Experience Survey,

Department of Health, 2013.

9 Oxford Economics, Can Work, Will Work: Valuand understanding the needs of people living with workforce, London: Oxford Economics, 2012.

10 NHS Business Services Authority,NHS Low Inwww.nhsbsa.nhs.uk/1125.aspx (accessed 24 O

11 DWP,Benefits Rules Change to Help People with for Work and Pensions, Sep 2012, https://wwwgovernment/news/benefits-rules-change-to-hecancer (accessed 24 Oct 2013).

12 DWP,Differences and Similarities Between PIP aDepartment for Work and Pensions, Sept 201

www.dwp.gov.uk/docs/pip-toolkit-factsheet-0differences-similarities.pdf (accessed 24 Oct 2

13 DWP,Disability Living Allowance Reform, Depaand Pensions, May 2012, https://www.gov.ukuploads/system/uploads/attachment_data/fireform-wr2011-ia.pdf (accessed 24 Oct 2013).

14 A Grice, Governments 5bn Work Programm

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17 Ibid.

18 DWP, Vocational Rehabilitation: Scientific eviDepartment for Work and Pensions, Jul 20docs/hwwb-vocational-rehabilitation.pdf (

19 Oxford Economics, Can Work, Will Work.

20 Ibid.

21 H Featherstone and L Whitham, The Cost ofPolicy Exchange, 2010.

22 Macmillan Cancer Support,Making the Shif

23 C Black and D Frost,Health at Work IndepSickness Absence, London: Department for W

2011.

24 T Taskila, J Guilliford and S Bevan,ReturnSurvivors and the Health and Work AssessmentLondon: The Work Foundation, 2013.

25 C Wood, P Cheetham and T Gregory, CopiLondon: Demos, 2011.

Notes


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28 Macmillan Cancer Support, The Role of Cancer

NHS, Oct 2012, www.macmillan.org.uk/DocuGetInvolved/Campaigns/TheroleofcancernetS.pdf (accessed 24 Oct 2013).

29 C Fitch and R Davey,Debt Collection and Ment

to improve recovery, Royal College of Psychiatrwww.rcpsych.ac.uk/pdf/Debt%20collection%20health%20report.pdf (accessed 24 Oct 2013

30 Unite, Unite Financial Advice, nd, www.unithow-we-help/memberoffers/memberbenefits/unitefinancialadvice/ (accessed 24 Oct 2013).

31 Unite, Unite Credit Union Service, nd, wwworg/how-we-help/memberoffers/memberbeneunion/ (accessed 24 Oct 2013).

32 NHS Choices, Information Prescription Servwww.nhs.uk/ipg/Pages/IPStart.aspx (accesse

33 Not his real name.

34 J Kausto et al, Partial sick leave review of itfeasibility in the Nordic countries, ScandinavEnvironment and Health 34, no 8, 2008, 2394

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39 The Pensions Act 2008 placed new dut

provide access to a workplace pension sworkers to help them save for retiremenenrolment opt-out rather than opt-in foNEST was established as a public penspeople whose employer does not offer a

pension, particularly smaller businesseswww.nestpensions.org.uk/.


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References

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References

Black C and Frost D,Health at Work IndepSickness Absence, London: Department fo2011.

DH,National Cancer Patient Experience SurvDepartment of Health, 2013.

DH, People will see health and social care2018, press release, Department of Heahttps://www.gov.uk/government/news/

health-and-social-care-fully-joined-up-bOct 2013).

DWP,Benefits Rules Change to Help People wfor Work and Pensions, Sep 2012, httpsgovernment/news/benefits-rules-changcancer (accessed 24 Oct 2013).

DWP,Differences and Similarities Between PIP

F th t H d Whith L Th C t f C

References


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Featherstone H and Whitham L, The Cost of Ca

Policy Exchange, 2010.

Fitch C and Davey R,Debt Collection and Mentto improve recovery, Royal College of Psychwww.rcpsych.ac.uk/pdf/Debt%20collectio

al%20health%20report.pdf (accessed 24 O

Grice A, Governments 5bn Work Programmfailing badly as figures reveal only one indisabled people have been found lasting jo27 Jun 2013, www.independent.co.uk/newgovernments-5bn-work-programme-still-fabadly-as-figures-reveal-only-one-in-20-sickpeople-have-been-found-lasting-jobs-867724 Oct 2013).

Hudson B, Will Norman Lambs integration programme succeed?, Guardian, 24 Jun 20co.uk/healthcare-network/2013/jun/24/inprogramme-succeed (accessed 24 Oct 2013

Kausto J et al, Partial sick leave review of itfeasibility in the Nordic countries, ScandiWork, Environment and Health 34, no 8, 200

Macmillan Cancer Support The Role of Can

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Macmillan Cancer Support, The Role of Can

NHS, Oct 2012, www.macmillan.org.ukGetInvolved/Campaigns/TheroleofcanNHS.pdf (accessed 24 Oct 2013).

NHS Business Services Authority,NHS Low

www.nhsbsa.nhs.uk/1125.aspx (accessed

NHS Choices, Information Prescription Swww.nhs.uk/ipg/Pages/IPStart.aspx (a

Oxford Economics, Can Work, Will Work: Vand understanding the needs of people livinworkforce, London: Oxford Economics,

Shiri R et al, Health-related effects of earlydue to musculoskeletal disorders: a ran

trial, Scandinavian Journal of Work, Env39, no 1, 2013, 3745.

Taskila T, Guilliford J and Bevan S,ReturnSurvivors and the Health and Work AssessmService, London: The Work Foundation

Unite, Unite Credit Union Service, nd, worg/how-we-help/memberoffers/memb

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This project was funded by

Macmillan Cancer Support:


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Cancer is no longer as lethal as it once was. Improvements indiagnosis and treatment mean that the number of peopleliving with or beyond cancer will have doubled by 2030. Butthese great steps forward in healthcare are only part of thestory, as more and more patients find themselves confrontedby the financial consequences of cancer.


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y q

A cancer diagnosis can cost an individual an average of570 a month, through increased expenditure on things liketravel and loss of income from having to give up work. Thisplaces a huge financial burden on patients and their families,and is a growing issue that needs to be addressed. This reportbuilds on prior research undertaken by the University ofBristol and Macmillan Cancer Support as well as extensiveexpert and stakeholder engagement in order to lay out, andbegin to address, the financial impact of cancer on

individuals and families.Paying the Pricehas recommendations for the NHS and

central government in order to help ease the pressures, andidentifies a key role for civil society, employers and financialservice providers. It supports a right to flexible work forthose experiencing long-term illness and suggests that thepublic sector lead the way towards a culture of cancer-friendly employers. It recommends that the NHS perform a

financial health check at the point of diagnosis. And itadvocates training for frontline bank staff in how to supportcustomers with long-term conditions. These measures wouldhelp those affected cope with the financial cost of cancer.

Max Wind-Cowie is a Demos Associate. Jo Salter is aResearcher at Demos.

ISBN 978-1-909037-46-5 10

Demos 2013

Wind-Cowie, M. & Salter, J. (2013). Paying the price. Demos, London

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Transcript of Wind-Cowie, M. & Salter, J. (2013). Paying the price. Demos, London