Cancer and disability benefits: a synthesis of qualitative findings on advice and support

Review

Cancer and disability benefits: a synthesis of qualitativefindings on advice and support

Kate Wilson*y and Ziv Amirz

Macmillan Research Unit, School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK

* Correspondence to:Macmillan Research Unit,School of Nursing, Midwiferyand Social Work, University ofManchester, Gateway House,Piccadilly South, ManchesterM60 7LP, UK. E-mail:[email protected] Research Fellow.zDirector.

Abstract

Following the Supportive and Palliative Care Guidance, a call was made for a meta-

ethnography on social support services for people affected by cancer. We responded by focusing

on the topic of financial advice and support. After a scoping exercise revealed little qualitative

evidence, we adopted the chief aim of identifying issues for research. Over 50 keywords relating

to patient finances, cancer and qualitative research were entered into electronic search

databases and combined. Because of the nature of the literature found, we synthesized primary

data into themes and discussion, rather than second-order constructs into third-order

constructs, as is common in meta-ethnography. Most of the literature found serves pragmatic,

campaigning and/or service-development objectives. Also, most relates to disability benefits

rather than insurance, tax and other issues. Five themes emerged: patients’ struggles to obtain

financial advice and benefits; tests/rules for disability benefits; issues relating to ‘Special Rules’;

intervention by benefit advisers; and intervention by health/social-care professionals. Struggles

with the benefit system emerged as the fundamental theme.

We conclude that patients need sensitive, proactive services to assist with benefit claims, and

a benefit system that seems supportive rather than obstructive. Numerous under-researched

topics were identified, including the need for general financial advice, help for carers, and

cultural issues.

Copyright # 2007 John Wiley & Sons, Ltd.

Keywords: cancer; oncology; welfare benefits; advice and support; struggle

Introduction

Following the Supportive and Palliative CareGuidance [1,2], a call was made for a meta-ethnography on social support services, to supple-ment the quantitative evidence [3]. We respondedto this by focusing on the topic of financial adviceand support for people affected by cancer, as theGuidance contains little evidence on this.In Great Britain, the Benefits Agency (BA)

administered the provision of welfare benefits until2001, when it was superseded by the Department forWork and Pensions (DWP); the equivalent organi-zation in Northern Ireland is the Social SecurityAgency (SSA). Recently, the National Audit Office[4] commented that the structure and processes ofthe DWP are extremely complex. For example,entitlement to welfare benefits during periods ofsickness and disability can depend on employmentstatus, age, mobility, income/savings, prognosis andnumerous other factors, and claiming these benefitsinvolves completion of lengthy and complex forms.A document associated with Macmillan CancerRelief’s Better Deal campaign [5] estimates thatpatients with terminal cancer failed to claim morethan £126.5 million in Disability Allowance (DLA)

and Attendance Allowance (AA) over a six-monthperiod. This figure excludes patients living with(rather than dying from) cancer, and benefits such asCarer’s Allowance that are linked to DLA/AA. TheDWP is currently engaged in far-reaching changesto Incapacity Benefit [6,7] but there are nopublicized plans to reform or improve access todisability benefits.

Entitlement to certain other monies, e.g. re-imbursement through the Hospital Travel CostsScheme, is dependent on eligibility for means-tested benefits such as Income Support [8]. Inaddition, employers, the Inland Revenue, insur-ance providers, charities and many other organiza-tions play a part in the finances of people affectedby cancer.

Although some cancers still carry a relativelyshort prognosis [9], technological advances are, inmany cancers, leading to longer survival andincreased cure rates. In breast cancer, a combina-tion of surgery, chemotherapy, radiotherapy andhormone therapy may result in side effects, andfluctuations in health and disability over a year ormore, but is associated with survival benefit [10].Also, palliative chemotherapy and radiotherapyare increasingly used in advanced and/or meta-

Received: 8 November 2006

Revised: 11 June 2007

Accepted: 7 July 2007

Copyright # 2007 John Wiley & Sons, Ltd.

Psycho-OncologyPsycho-Oncology 17: 421–429 (2008)Published online 7 September 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1265

static cancer and can result in lengthy episodes ofdebility and well-being [11,12], eventually followedby deterioration and death. Thus, technologicalchange may have put the rules that cover disabilitybenefits, insurance cover and other forms offinancial support out of step with many people’scancer trajectories. Also, it is now common fornon-surgical cancer treatments to take place on anoutpatient basis [13]; this has implications for thefinances of patients who travel long distances fortreatment [14].Although there is a body of UK literature on

welfare advice in primary care settings [e.g. 15,16],and a small quantitative study that concludes thathealth/social-care professionals miss opportunities toassist with cancer-related benefit claims [17], aliterature scoping exercise identified few qualitativeresearch publications on financial advice and sup-port for people affected by cancer. For this reason,we commenced the search process with the chief aimof identifying areas that merit further research.

Methods

Search procedure

The electronic databases searched were CINAHL,EMBASE, MEDLINE, PsycINFO, and SocialWork Abstracts. Over 50 keywords were entered,including ‘benefits advice’, ‘debt’, ‘IncapacityBenefit’, and ‘income’. These were combined withterms relating to cancer and qualitative research.Both free-text and MeSH searching was used.Relevant publications in reference lists and greyliterature, such as reports, were identified andconsidered for inclusion.Because of the ever-changing nature of health

and financial policy, searches were restricted toliterature published between 1999 and 2007. Also,because policies/legislation on benefits and healthand social care vary widely in different countries,only the UK literature was sought.

Data synthesis

There is currently much debate about methods ofqualitative synthesis [18,19]. Despite our originalintentions, the literature retrieved did not lend itselfto meta-ethnography as described by its originators[20] and current proponents, e.g. [21]. Noblit andHare describe the seven-phase process involved inmeta-ethnography; following this process wasunproblematic until phase 5, ‘translating thestudies into one another’, was reached. At thispoint, we found that the six relevant studiesretrieved were so diverse (Table 1) that translationwould be artificial and forced. We could havefocused on a sub-set of congruent studies, but asthe number of publications was small this also didnot seem appropriate.

For these reasons, we decided it was moreappropriate to conduct a synthesis of primary datathan a meta-ethnography. Because much of theliterature found serves a pragmatic, campaigningor service-development function rather than aca-demic purposes, we concentrated on synthesizingdata into themes and generating discussion ratherthan on synthesizing second-order constructs ortheory, and producing third-order constructs, as inmeta-ethnography [21]. The process of thematicanalysis was similar to that used in primaryqualitative research [28].

Findings

Several qualitative research papers were found thatmention financial issues as part of the generaldifficulties of people affected by cancer, e.g. [29,30].However, these contain few primary data onfinancial advice and support, and were not, there-fore, included.As noted above, the literature suitable for

synthesis was sparse and diverse. In some of thesix publications, details of methods are sketchy;three are based on both qualitative and quantita-tive data (Table 1) and these two strands can bedifficult to disentangle. Most have little theoreticalcontent, although the report by Thomas et al. [27]embraces theory in that it focuses on ‘the social’ asopposed to ‘the psychological’. Although financialissues are only one component, this report containsa substantial amount of qualitative data on patientfinances; two qualitative papers emerging from it[31,32] address general needs and contain noadditional data.To emphasize the need for financial advice/

support services, a brief description of the difficul-ties experienced by people affected by cancer isappropriate. Thomas et al. [27] quote a manrecovering from bowel surgery who stated thathis main worry was ‘the financial help that Ineed. . . until I’m on my feet again and I can getback to work’. Other prominent issues includeincreased expenditure on travel, prescriptions andnumerous other items, and money-saving strate-gies, e.g. forgoing family holidays.Although our search included organizations such

as the Inland Revenue and grant-making charities,the literature retrieved focuses almost exclusivelyon services involved in benefit claims and, inparticular, DLA and AA. There are few datarelating to other benefits, such as IncapacityBenefit or Income Support.Five themes emerged:

1. patients’ struggles to obtain financial advice andbenefits;

2. tests/rules for DLA/AA;3. Special Rules for DLA/AA;

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 17: 421–429 (2008)

DOI: 10.1002/pon

422 K. Wilson and Z. Amir

4. intervention by benefit advisers; and5. intervention by health/social-care professionals.

Patients’ struggles to obtain financial advice andbenefits

The publications synthesized emphasize a lack ofaccessible information/advice on financial issues atthe time of diagnosis/initial treatment which iscompounded by patients’ preoccupation withphysical disease at this time:

2 months down the line you suddenly realize that. . .benefit will start from that point onwards whereas you

should really be hooked into the system from the day of

your diagnosis. . . There should be specialist advisers and

I’ve been told that there are; however I wasn’t able to

access them. (Chapple et al. [22])

I became so worried about my finances that I asked for

help at my local benefits office. They told me I might be

able to claim [travel costs] at the hospital. Why on earth

didn’t anyone mention this earlier? (Macmillan [24])

Without universal, automatic financial informa-tion/advice at diagnosis, hardship may accelerateinto serious debt. However, the report by Macmil-lan and SSA [25] warns that the stigma associatedwith claiming benefits, and prognosis-related issuesnecessitate a sensitive approach.Benefit claims often involved a lengthy, exhaust-

ing and dispiriting process. When describing theirexperiences, some patients used ‘struggle’ languagesimilar to that used in relation to cancer:

Family members. . . fought my corner. But it was a tussle

to get all the benefits acknowledged. (Chapple et al. [22])

I have been referred to a psychologist, and I blame it on

my ongoing battle with Disability Living Allowance.

(Macmillan and SSA [25])

Table 1. The publications synthesized

Author(s)/year/country Research methods/aims Participants Themes/findings

Chapple et al. (2004), UK [22] Interviews regarding financial

concerns, and experiences of

benefit claims

45 people with lung cancer Finances not a priority at diag-

nosis; lack of help in hospital;

struggles with claims; stigma;

cultural issues

Macmillan (2005), UK [23] ‘Structured’ interviews to explore

challenges faced by cancer pa-

tients when claiming DLA/AA

17 specialist cancer benefits ad-

visers

Poor fit between cancer and

benefit tests/rules; patients/health

professionals lack knowledge

about DLA/AA; patients use risky

strategies to retain benefits

Macmillan (2005), UK [24] Interviews, focus groups and case

studies regarding cancer-related

travel/parking costs and reimbur-

sement (plus quantitative meth-

ods)

10 Macmillan information work-

ers, 286 hospital-based cancer

nurse specialists/information offi-

cers, 419 cancer patients (num-

ber not given)

Travel and parking costs are a

burden; reimbursement proce-

dures are bureaucratic and

stressful

Macmillan and Social Security

Agency (2003), Northern Ireland

[25]

Focus groups and interviews on

barriers to accessing benefits for

cancer patients, and examples of

good practice

Macmillan/district/hospice nurses,

social workers, advice sector staff,

social security staff, GPs, cancer

support group members, pa-

tients, carers (numbers not given)

Patients lack knowledge re acces-

sing benefits, and struggle with

applications; health/social care

staff lack knowledge of benefits;

benefit advisers/social security

staff know little about cancer;

decision makers receive inade-

quate documentation

Quinn (2002), UK [26] Interviews and surveys on bar-

riers to obtaining benefits, and

benefits advice/information ser-

vices for people with cancer (plus

quantitative methods)

21 staff from services providing

benefits advice, 19 people af-

fected by cancer, 13 health/social

care staff

Barriers re awareness of entitle-

ment, and information on/help

with applying; advice services

need to: be proactive, address

issues beyond benefits, provide

follow up, be family centred, and

understand both cancer and

benefits; health/social care staff

lack knowledge to provide advice

Thomas et al. (2001), UK [27] Pilot and main study including

focus groups and interviews to

explore psychosocial needs of

people with cancer and their

carers; main focus on breast, lung

and colorectal cancer and lym-

phoma (plus quantitative meth-

ods)

Pilot study: 23 patients, 26 carers,

20 bereaved people, 63 health

professionals Main study: 47 pa-

tients, 32 carers, 15 GPs, 9

nurses, 8 consultants, 3 managers,

4 other staff

Major financial issues are: the cost

of hospital travel, especially for

economically disadvantaged peo-

ple; stress due to slow and

complicated benefit claims; sup-

port from health professionals is

welcome but limited

423Cancer and disability benefits


DOI: 10.1002/pon

These comments are illuminated by a description ofthe treadmill of form-filling, rejection, appeals andshort-lived entitlement:

I have just won an appeal and have been awarded high

rate mobility and low rate care [allowance] backdated for

18 months. . . I am now in debt due to giving up work for

cancer treatment. . . the award is due to run out again in

four months so I have to apply again already. (Macmil-

lan and SSA [25])

Some interviewees quoted by Chapple et al. [22]said that benefit forms require ‘a degree in higherEnglish’ and are ‘not user-friendly, to man orbeast’; the only participants who did not agree werea lecturer in social work and the husband of awoman who worked for the Benefits Agency.Struggles to complete forms can be aggravated bydebility and a reluctance to confront ill-health:

On a bad day it is impossible. . . on a good day the forms

are OK, but then you try to forget the bad days and tend

to make a better story out of how you are feeling.


However, understating one’s ‘story’ may result in aclaim being rejected.Struggles with paperwork, waiting and uncer-

tainty about the outcome may combine to causestress; one patient noted that ‘stress can causecancer and waiting on financial support frombenefits just adds more stress’ [25].

Tests/rules for DLA/AA

Uncertainty may result from the mismatch betweenthe trajectory of cancer and the tests/rules thatgovern entitlement (Box 1). Some patients under-state their case because they assume that cancercarries automatic entitlement. However, as a socialworker noted, DLA forms ignore several importantfactors in cancer-related disability:

There is no scope. . . for variability in a person’s

condition. . . questions are very practical and physical. . .[and] don’t take account of side effects of chemotherapy

or the psychological impact of cancer. (Macmillan and

SSA [25])

Only one report covers benefit advisers’ views onentitlement tests/rules in detail [23]. One advisercommented on the retrospective test for DLA/AA:

[Patients] put the date of diagnosis [on the form], or. . . adate maybe a month ago, without realising that that

will. . . result in a decision coming back and saying ‘You

can’t satisfy the time tests’.

People with lung cancer exemplify this situation;they may be too breathless to walk for threemonths or more before diagnosis, but often onlyclaim from the date of diagnosis. Different types ofcancer carry different disadvantages:

Breast cancer patients. . . don’t become ill until they are

diagnosed}it’s the treatment that makes them ill. So

they fall foul of it from day one really, they can’t fulfil the

tests.

Advisers also felt that the six-month retrospectivecriterion for AA discriminated against olderpeople, who were ‘more likely to die before a claimis awarded’. However, people with comorbiditiescan be at an advantage because their pre-existingneeds may fit the retrospective test better thancancer does:

I tend to go back to other problems that they have had,

as well as the cancer. . . I try to get around it. . . Lots ofpeople don’t fit the qualifying times.

The prospective test for DLA causes difficultiesbecause fluctuations in condition are unpredictable.One woman developed major chemotherapy sideeffects but failed the forward test because she justwrote ‘breast cancer’ on her form, completed beforethese developed. Also, doctors, like patients, hopefor a swift recovery and may provide evidencesaying that they ‘expect the patient to be a lot betterin four months time’, which will result in rejection.Downrating and linking rules can cause loss

of DLA/AA if the patient is admitted to hospital

Box 1. Entitlement to Disability Living Allowance/Attendance Allowance

People under 65 who need care qualify for thecare component of Disability Living Allowance(DLA), and those older than 65 can claimAttendance Allowance (AA). Those withwalking difficulties may qualify for the DLAmobility component; AA has no equivalentcomponent. Those awarded DLA/AA may beentitled to other benefits, such as Carer’sAllowance, enhanced Income Support, and roadtax exemption.Patients claiming DLA must have had mobility/care needs for three months (the retrospectivetest), and must anticipate having these needs fora further six months (the prospective test); AAapplicants must have had care needs for sixmonths but there is no prospective test.If a patient is in hospital for more than 28consecutive days, DLA/AA is lost until theyreturn home (the downrating rule). If a patienthas a number of shorter stays adding up to 28days, benefit is lost for each subsequent day inhospital until the patient has a stretch of 28 daysout of hospital, after which the accumulationperiod recommences (the linking rule).Special rules apply to patients certified by ahealth professional to have a life expectancy ofless than six months; the professional completesa DS1500 form to allow DLA/AA to beobtained immediately.



DOI: 10.1002/pon

(Box 1). This can have severe financial andemotional impacts on patients and families:

I’ve had clients who have been threatened with

eviction. . . when they’ve lost their DLA. . . they’ve lost

their income support. . . subsequently lost their housing

benefit, they’re in the hospital, they’ve got no means

coming into the house. . . it must be extremely distressing.

The linking rule may conflict with treatmentpatterns and effects. Some patients have inpatientchemotherapy every three weeks and so rarely get astretch of 28 days at home. In addition, weakenedimmunity and consequent infections can result inhospitalization.Some patients avoid, re-arrange or shorten

hospital stays to prevent loss of benefit, or concealadmissions from the DWP:

They’ll go in until they hit their 28th day, and then they

won’t go back for treatment until another 28 days have

elapsed. . . it can’t help them [health-wise] because they’re

basically not getting treatment for a month.

She’s in and out of hospital on a regular basis but doesn’t

declare it. . . she’s getting herself in a mess basically and

we’ll deal with it when they discover it.

Lastly, some procedures are inappropriate forimmunocompromised patients, such as requiringattendance at crowded benefit offices for interview/examination [25].

Special rules for DLA/AA

Difficulties with the Special Rules for DLA/AA(Box 1) relate to awareness and estimation ofprognosis, documentation, and DWP staff’s knowl-edge of cancer.Chapple et al. [22] report that a man with lung

cancer underwent application, rejection, appealand further rejection, without knowing about theDS1500 form or whether he qualified under SpecialRules. This may have been because health profes-sionals were reluctant to discuss his prognosis withhim. Without information from health profes-sionals, benefit advisers can experience difficultywith patients who might have a limited prognosis:

Unless they give you a way in the first place by mentioning

they are terminally ill. . . you have to try and broach that

in ways that doesn’t cause upset. (Macmillan [23])

Health professionals’ ability to estimate prognosisis limited because even lethal forms of cancer areunpredictable [25]. In addition, doctors ‘may wantto believe that their patient will pull through’ [23].A benefit adviser interviewed for this report statedthat, sometimes, the GP and Macmillan nurse feelthat a patient is eligible under Special Rules but theconsultant informs them that he/she will be havingpotentially life-extending surgery. Consequently,the adviser cannot support an application underSpecial Rules, resulting in delayed payment and

reduction in the total amount received, or deathbefore payment is made. Other advisers suggestedthat some health professionals feel they must becertain that the patient will die within six months;this can be reinforced by telephone calls from theDWP to say ‘you signed a DS1500 for this patient14 months ago and she’s still claiming’ [23].There are concerns that benefit providers, who

may never see the patient, do not respect theclinical judgement of health professionals; one GPstated that they should not ‘query me’ but ‘shouldaccept my opinion’ [25]. A benefits adviser felt thatthe DWP operated on the basis of a strict, old-fashioned hierarchy:

If a consultant says it, it’s got to be true, if a GP says it,

then it might be true, and if a Macmillan nurse says it,

well, possibly true. (Macmillan [23])

Issues relating to documentation include incom-plete/unclear submissions by health professionals.A benefits adviser commented:

A lot of GPs and. . . consultants don’t understand what a

DS1500 really means. . . some hardly fill in forms. . . theythink they can send in the DS1500 on its own. . . and

didn’t realize they had to fill in an Attendance Allowance

form. (Macmillan [23])

DWP staff may lack knowledge about which typesof cancer are associated with a poor prognosis.Some advisers praised dedicated DWP SpecialRules units, staffed by ‘well informed and empa-thetic personnel who process claims relativelyquickly’ [23]. However, in some areas, these havebeen abolished:

Sections that dealt with Special Rules cases. . . were

experienced in them, perhaps a little bit more sensitive. . .they are no longer dealt with on a special section. . .perhapsthat wasn’t the best move. (Macmillan [23])

The sections of this review dealing with benefitrules include few patient voices; however, theirstruggles to gain benefits reflect a mismatchbetween the rules and cancer, and limited under-standing of and sensitivity towards cancer amongstthose applying the rules.

Benefit advisers

Some patients were critical of benefit advisersworking for the SSA. A patient having chemother-apy said that an SSA adviser commented that ‘itwould be good to just put on a wig. . . instead ofhaving to do your hair’, and asked ‘wouldn’t it beworse if you had an arm missing?’ [25]. Otherpatients quoted in this report said:

Someone came to my house from the Social Security

Office to help me with the Income Support application. . .the person did not tell me about any other benefits I

could have applied for.



DOI: 10.1002/pon

I would not trust the Social Security Agency to offer

benefits advice or help fill out forms. . . they make you feel

it’s their money. . . they think all people don’t want to work.

A health professional also commented that the‘Benefits Agency tends not to give enough/ade-quate advice, and can put people off’ [26]. Bycontrast, voluntary sector advisers were appre-ciated by some patients:

Citizens Advice Bureau are better to advise}they are

confident and trained and they give independent advice

and tell you everything you could get. (Macmillan and

SSA [25])

Voluntary sector advisers discussed the detrimentaleffects of limited resources and/or insecure fundingon the range of services offered, numbers of peopleseen and continuity [25,26]. Advisers in Quinn’sstudy also highlighted: the time and effort involvedin assisting debilitated people; the need forpractical/financial advice on a range of issues suchas employment and housing; and the desirablequalities of a benefits advice service, includingproactivity, accessibility, sensitivity, continuity anda thorough knowledge of cancer.

Health/social-care professionals

Just as decision makers and benefit advisers maylack detailed knowledge about cancer and itstreatment, many health/social-care professionalshave limited knowledge about the complexities ofthe benefits system:

I have no training or specific information. . . I may not

know what my patients are entitled to. (District nurse;

Quinn [26])

. . .health professionals. . . say ‘no, I don’t think you will

get this [benefit] because you don’t get any help...’ On the

form it clearly says it’s the help you need, not the help

you receive [that determines entitlement]. (Benefits

adviser; Macmillan [23])

I wasn’t aware that by not returning the Incapacity

Benefit report promptly that people who have cancer

might have to undergo medical examination. (GP;

Macmillan and SSA [25])

Some health/social-care professionals asserted thathelping patients with benefits is not their job; lackof training and anxieties about complexity mayunderpin this view, but one GP stated that thebiggest problem was ‘time, time and time’ [25].Other professionals said that time spent on benefitsmeant less spent on other patients and/or otherissues. Further to this, a self-help group membernoted that health professionals often assume that‘someone else has told the patient about benefits’,and added that ‘all professionals are overloaded’[26].A patient who lost benefit because he received no

advice early in his cancer journey described thesupport available in hospital as ‘dismal’ [22].

Others noted a lack of hospital-based advice andfailure of health/social-care professionals in hospi-tals to act; some wanted more posters aboutbenefits displayed in wards/outpatient depart-ments, as ‘you spend so long there looking at thewalls’ [25].Sometimes health professionals are asked to

provide evidence to corroborate benefit claimsand fail to help because of a lack of knowledge:

Disability Living Allowance wrote to my GP and I was

turned down. . . I had not seen my GP since I was

diagnosed. . . he didn’t really know me or know a lot

about breast cancer. . . why did they not use the hospital

consultant. (Macmillan and SSA [25])

In addition to ‘sins of omission’, some healthprofessionals behaved in ways that were unsuppor-tive and potentially distressing to patients:

When I told my nurse I was worried about money she

asked me why did I leave work? How can I work at the

moment.

I asked my GP to fill in the statement on the Disability

Living Allowance. . . [and] was told ‘I’m not filling it in,

you’re not entitled to that’. Social Security Agency

advised me to apply. . . and benefit was awarded.


In one report, benefit advisers describe: healthprofessionals who characterize claimants as‘scroungers’; a nurse who assumed that a patientdid not need DLA because he/she belonged to anethnic minority that ‘looks after their own’; and aconsultant who admitted ‘a socially deprivedyoung man with addiction problems’ to hospitalto curtail his benefits and, thus, his ability to buydrugs. A fourth adviser describes a major con-sequence of unsupportive behaviour:

I had a lady who died just before Christmas. . . whose

consultant refused to give me a DS1500 in September

because she wasn’t terminally ill. . . She died before the

money came through. (Macmillan [23])

However, some professionals do act in a supportiveway, as illustrated in several of the extractsthroughout this paper and the words of one districtnurse:

I refer them to Citizen’s Advice or Welfare Rights if they

are well enough. Otherwise I sort it out. (Quinn [26])

Discussion

Although, initially, we found the sparseness ofrelevant qualitative research surprising, we realizedlater that research into financial issues oftenfocuses on actual costs and takes a quantitativeapproach, e.g. [33], and examines the finances ofservices rather than those of patients, e.g. [34]. Ourpaper, therefore, adds to the published academicliterature and supplements the NICE Guidance[1,2] by highlighting the impact of benefits policy,



DOI: 10.1002/pon

and the practices of benefits provision staff andhealth/social-care professionals on the finances andlife experiences of people with cancer. In addition,the narrow scope of the literature found promptsideas for further research. The paucity of researchinto financial issues in cancer may reflect a relativedisinterest in ‘socio-oncology’. Thomas et al. [27]highlight the dominance of psychological issuesover social issues in the literature and emphasizethe social context of patient experiences and theactions of services. Papers arising from their reportaccentuate socio-economic variation in psychoso-cial need [35] and needs that must be addressed at asocietal level [31].Some of the issues raised in our findings mirror

those in the literature on welfare benefits andillness/disability in general. These include thecomplexity of benefit claim forms [36] and a lackof information about disability benefits [37].Perhaps the most distinctive cancer-specific issuearising from our synthesis is that, in cancer, it isoften treatment rather than disease that disablespatients; this is particularly the case with che-motherapy, which may make people both unable towork and, because of the linking rule, ineligible fordisability benefits. It can also give rise to fluctua-tions in condition that are difficult to detail onclaim forms and may, thus, lead to claims beingrejected. In addition, issues relating to SpecialRules are more prominent in our findings than inthe literature on benefits and illness/disability ingeneral, e.g. [36,37], reflecting that, under somecircumstances, cancer remains a rapidly lethaldisease. In people with slowly advancing cancers,however, disease trajectories and issues relating tobenefits may be similar to those experienced bypeople with other chronic illnesses and disabilities.The literature on benefits and illness/disability in

general includes research on welfare advice inprimary care, in which advisers from organizationssuch as the Citizens’ Advice Bureau were secondedto GP practices for one or two days per week, e.g.[15]. This model could be transferable to cancerhospitals and units, where patients often spend agreat deal of time during early/acute phases of theirillness. It may, however, be more difficult to applyin general hospitals, where many patients haveinitial surgery. Nosowska [17] comments thathospital doctors tell people their diagnoses andare, therefore, well placed to provide initialinformation. However, issues relating to time, roleand the complexity of the benefits system may needto be addressed before this is feasible.The fundamental theme in this review is patients’

struggles with the benefit system, examples ofwhich are evident throughout the Findings section.Thomas et al. [27], note that some patients andcarers ‘who struggled with the welfare system. . .suggested that it was worse than the illness’.Existing health-care literature emphasizes struggles

with cancer per se, and with the physical andpsychological effects of the disease and its treat-ment [38]. These may leave patients with littleenergy for addressing financial issues, which mayinvolve psychological struggles with feelings ofstigmatization, stress and defeat, and/or socialstruggles with systems and services (or a lack ofservices). Our paper suggests that the latter areassociated with insufficient information/advice, ill-fitting benefit rules, and a lack of sensitivity andknowledge on the part of some service providers.

Conclusions

Patients need sensitive, proactive services to guidethem through benefit claims, and a benefit systemthat is more like a support mechanism than anobstacle course. Given the small number ofpublications synthesized, it is inappropriate tomake major policy recommendations. However,we present some messages for benefit adviceservices, health/social-care practice and the benefitssystem, as well as suggestions for further research.

Implications for practice

Greater publicity about benefits and other financialhelp for people affected by cancer is needed.Information/advice should be offered at diagnosis,to prevent late applications, loss of benefit andfinancial hardship, although sensitivity is neededbecause of issues relating to stigmatization andprognosis. Health/social-care professionals shouldnot assume that someone else has already addressedpatients’ needs. The complexity of the benefitssystem will, however, necessitate the referral of mostpatients to benefit advisers at an early stage.Benefit claims forms and procedures need to be

more transparent and relevant to cancer; benefitrules/tests also need revision to align them with thetrajectory of cancer and its treatment. In addition,lengthening the prognosis-related qualifying periodfrom six months to one year might facilitate receiptof benefit under Special Rules; special decision-making units might improve patient experiences inthis area.Lastly, cancer awareness training for benefit

providers and advisers could be based at cancerhospitals/hospices, and led by health/social-careprofessionals and people affected by cancer.Training about benefits for health- and social-careworkers could feature benefit advisers, DWP/SSAemployees and people who have made cancer-related benefit claims.The suggestions above have resource implica-

tions, as does their desired outcome: increasedeligibility for and uptake of benefits. However, theUK Government has already shown a willingnessto respond to calls made in certain documents, e.g.



DOI: 10.1002/pon

[24] by reviewing hospital travel and parking costs,along with various NHS charges [39].

Further research

Existing literature focuses mainly on DLA/AA.Carers’ Allowance, Income Support, IncapacityBenefit, Pension Credit and other relevant benefitsshould be included in future studies, as shouldservices/organizations that deal with sick pay,compensation, tax, insurance, debt, etc. Researchis also needed into models of providing benefits/financial advice in hospital settings.One report [23] suggests that DWP staff fail to

distinguish between different types of cancer. Dataon lung cancer and breast cancer illustrate thatdisease trajectories can affect financial needs andentitlement, and suggest a need for comparativeresearch. This report also highlights healthprofessionals’ lack of cultural competence; Chap-ple et al. [22] note the effect of educational level onlung cancer patients’ ability to cope with benefitforms, and advocate consideration of wider lan-guage/cultural issues. These may affect both levelof practical and financial support needed, andencounters with services.Two reports [24,27] suggest that carers some-

times experience reduced income and/or travelcosts because of cancer-related caring duties.However, the issue of how services do or mightmeet carers’ financial needs is largely unexplored.The perspectives of benefit decision makers on

cancer-related benefit claims are only present in theMacmillan and SSA report [25]. A clearer insightinto the perspectives of DWP staff whose workinvolves people affected by cancer might aid servicedevelopment. There is also a need to explore thefeasibility, content, implementation and effective-ness of training/education on cancer awareness forbenefit advisers and providers, and benefits aware-ness for health/social-care staff. Different models ofbenefit advice should undergo comparative evalua-tion, including those used by the DWP andvoluntary organizations.Many of these enquiries could start with

qualitative interviews with stakeholders and pro-gress to intervention studies [40]. Tunnage et al.[33] propose a multi-method study on cancerpatients’ awareness and uptake of benefits, andtheir attitudes to claiming. More mixed methodsresearch on income loss and increased expenditurecould strengthen the case for a robust but sensitivebenefits system and other financial support servicesfor people affected by cancer.This synthesis of qualitative data has, of

necessity, been largely conducted using reportsrather than academic papers. There is scope formore academic research in this area; greaterexposure of researchers to the financial struggles

of people affected by cancer could prompt in-creased activity in this important area.

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Documents

Cancer and disability benefits: a synthesis of qualitative findings on advice and support