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"Done more for me in a fortnight than anybody done in all me life." How welfare rights advice can help people with cancer

"Done more for me in a fortnight than anybody done in all me life." How welfare rights advice can... Background: In the UK many people with cancer and their carers do not have easy access to the welfare benefits to which they are entitled adding further strain to the process of dealing with cancer. It is estimated that nine out of ten cancer patients’ households experience loss of income as a direct result of cancer, which, due to its socio- economic patterning disproportionately affects those most likely to be financially disadvantaged. In the UK proactive welfare rights advice services accessed via health care settings significantly increase benefit entitlement among people with health problems and this paper reports on a qualitative study examining the impact of a welfare rights advice service specifically designed for people affected by cancer and their carers in County Durham, North East England (UK). Methods: Twenty two men and women with cancer or caring for someone with cancer who were recipients of welfare rights advice aged between 35 and 83 were recruited from a variety of health care and community settings. Semi-structured interviews were undertaken and analysed using the Framework method. Results: Most of the participants experienced financial strain following their cancer diagnosis. Participants accessed the welfare rights service in a variety of ways, but mainly through referral by other professionals. The additional income generated by successful benefit claims was used in a number of ways and included offsetting additional costs associated with cancer and lessening the impact of loss of earnings. Overall, receiving welfare rights advice eased feelings of stress over financial issues at a time when participants were concerned about dealing with the impact of cancer. Lack of knowledge about benefit entitlements was the main barrier to accessing benefits, and this outweighed attitudinal factors such as stigma and concerns about benefit fraud. Conclusions: Financial strain resulting from a cancer diagnosis is compounded in the UK by lack of easy access to information about benefit entitlements and assistance to claim. Proactive welfare rights advice services, working closely with health and social care professionals can assist with the practical demands that arise from dealing with the illness and should be considered an important part of a holistic approach to cancer treatment. Background pressures are not often discussed with health profes- In the UK, many people with cancer and their carers do sionals [3,4]. Evidence shows that cancer is likely to not have easy access to the welfare benefits to which affect patients’ incomes although there appear to be dif- they are entitled [1]. This may result in difficulties ferential effects depending on the type of cancer [5] and affording the additional resources required to cope with whether those affected are still in employment or retired illness [2], as well as adding further strain to the process [6]. Surviving cancer is associated with unemployment of dealing with cancer. However, such financial [7] and loss of earnings disproportionately affects those in low income groups [8]. Recently, gender differences in income following cancer diagnosis and treatment * Correspondence: s.m.moffatt@ncl.ac.uk Institute of Health & Society, Faculty of Medical Sciences, Baddiley-Clarke have been observed. Cancer in men may result in Building, Newcastle University, Richardson Road, Newcastle upon Tyne, NE2 greater financial difficulties than cancer among women 4AX, UK Full list of author information is available at the end of the article © 2010 Moffatt et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 2 of 12 http://www.biomedcentral.com/1472-6963/10/259 (in couple households), but women’s earnings were health care system it is often unclear who, if anyone, lower after both their own and their spouses’ cancer [8]. has responsibility or capacity for dealing with the social In most developed countries, welfare states have aspects of illness. The boundaries between medical and developed systems to compensate for unemployment as social issues are often blurred, and there are no routi- a result of illness, although the level of recompense and nely available services with the expertise to deal with the means by which it may be accessed varies [9]. The sociolegal issues arising from ill-health. UK state welfare system has a series of means tested In theUK, theprevalenceofmostcancersissocio- and non-means tested benefits designed to assist those economically patterned; higher rates of most cancers are who have ongoing health problems, as well as benefits found among people from lower occupational classes aimed at those who cannot work (either temporarily or [19]. There are exceptions to this socio-economic pat- permanently) due to ill-health. However, each year in terning, most notably breast cancer [20,21]. It is the the UK, billions of pounds of benefits remain unclaimed case that in the UK, the prevalence of most cancers are [1]. Services have been developed to assist citizens to higher within lower socio-economic groups, who are claim their entitlements, although these are often ad hoc already most likely to be financially disadvantaged. How- and short term arrangements. Perhaps the most success- ever, it is also the case that those on relatively high ful of these are proactive welfare rights advice services incomes pre-diagnosis may experience significant accessed via health care settings, which have repeatedly declines in income. Research into the psycho-social been found to significantly increase benefit entitlement aspects of cancer found that patients with fewer social among those with health problems [10]. Within the UK, and economic resources had significantly higher levels assisting people to obtain their full welfare benefit enti- of need for practical help with matters such as form- tlement was advocated by the Acheson Report as an filling, transportand housework, andthathelp with intervention with the potential to reduce inequalities in financial matters was identified as a ‘significant unmet health [11] and has been recognised as an important need’ [22] (p601). Additionally, technological advances response to tackling social and health inequalities by the are leading to increased cure rates and longer survival. UK’s Treasury [12] and the Social Exclusion Unit [13]. These welcome advances can lead to prolonged periods Additional resources (whether financial or other mate- of illness and disability, in some cases leading to remis- rial benefits such as aids and adaptations) have been sion and in others, death. The cancer trajectory may shown to reduce stress, improve individuals’ ability to therefore be long, uncertain and complex and pose diffi- cope with health problems and improve quality of life culties in relation to benefit eligibility criteria, particu- [14,15]. Many people with long-term health conditions larly for those of working age. and their carers face considerable financial burdens as a Within the UK health and social care system, there is result of their illness. For those of working age, income therefore a strong case for facilitating access to welfare maydropbecauseoftimeoff work fortreatment,job rights advice for people with cancer and their families in loss or the difficulties associated with re-entering order to assist them to claim their entitlements. This employment [8]. For those over state pension age, the paper reports on interim findings from an evaluation of additional costs of dealing with ill-health while on a a dedicated welfare rights advice service for people fixed income can have serious financial implications affected by cancer developed as a result of collaboration [16]. In the UK, one in five people over the state pen- between Durham County Council in North East England sion age live in poverty [17] and there are currently 23 and Macmillan Cancer Support (a major UK charity that different types of benefit available to older people, many provides practical, medical and financial support and of which are linked in a complex network of entitle- campaigns for better cancer care). We focus on (i) the ments [18]. The National Audit Office has criticised the impact of a cancer diagnosis on finances, (ii) the impact UK benefits system as unnecessarily complex [18]. of welfare rights advice, and (iii) issues in accessing wel- In the UK, nine out of ten cancer patients’ households fare rights advice. experience loss of income as a direct result of cancer [1]. This may be due to temporary or permanent loss of Background to the welfare rights advice service and earningsaswellasthe additional costs associated with cancer related benefits cancer such as travel costs to treatment centres. Despite In June 2008 Durham County Council, in collaboration this, among people with cancer and their carers, there is with Macmillan Cancer Support appointed three experi- significant under claiming of health-related benefits that enced welfare rights advisors to provide a dedicated ser- has been attributed to a number of factors including: vice for people with cancer and their carers across lack of knowledge about benefit entitlements, the com- County Durham in North East England. County plexities of the benefits system and the lack of services Durham has a population of 504,900 that includes designed to facilitate access to benefits. Within the UK urban, semi-rural and remote rural populations, as well Moffatt et al. BMC Health Services Research 2010, 10:259 Page 3 of 12 http://www.biomedcentral.com/1472-6963/10/259 as areas of significant socio-economic deprivation and months or less. In practice, it appears that there is wide poor health. Around one third of the population of variationindoctors’ interpretation of the six-month life County Durham live in the most deprived areas of Eng- expectancy definition of terminal illness as well as diffi- land, with only ten percent living in the least deprived culties in predicting patients’ life expectancy [27]. Evi- areas [23]. Life expectancy in County Durham for males dence from people with lung cancer indicates that, and females and early deaths from cancer is worse than despite these procedures, many do not obtain the bene- the average for England [24]. In terms of cancer type, fits to whichtheyare entitled becausetheydid not the highest incidence rates in men are for lung, prostate receive timely advice [3]. and colorectal cancers; for women the highest incidence rates are for breast, lung and colorectal cancers [25]. Methods The welfare rights advice service was designed to be Research governance freely accessible, so that individuals could self refer, as Ethical approval was obtained from Sunderland NHS well as be referred by health, social care or voluntary Local Research Ethics Committee and research govern- sector professionals. The three staff are based in the ance approval from the Research Management and Gov- local authority offices, but work in various National ernance Unit of County Durham & Tees Valley PCT. Health Service (NHS) and voluntary sector locations throughout the county when providing advice. At its Sampling and interviews inception, the service was widely advertised to the public Between June 2008 and March 2009, 792 individuals and professionals and there are ongoing publicity events were seen by the welfare rights service. During their and talks to maintain the service profile. The welfare first welfare rights advice consultation, participants were rights advisors provide dedicated welfare rights services informed about the research study and completed a for people affected by cancer. These include: service baseline questionnaire covering basic demographic delivery in a range of health, social care and voluntary information (age, sex, education, employment status, sector settings, home visits, contact by email and tele- referral route). Participants were given an information phone. The service comprises a full welfare benefits sheet about the qualitative study and asked to consider check followed by assistance to claim entitlements, fol- whether they would be willing to take part in an inter- low-up work and representation at appeals and tribu- view about their experiences of the welfare rights ser- nals. The welfare rights advisors also undertake vice. Those who consented (N = 105) formed the outreach work to voluntary and community groups in sampling frame for this qualitative interview study. order to facilitate awareness among the wider public. As Purposive sampling was undertaken to achieve maxi- well as this, they carry out awareness training for health, mum variation on the basis of age, sex, type of cancer, social care and voluntary sector staff to increase referral index of multiple deprivation (based on postcode) [23] and rates and to enable these staff to deliver basic benefit residential location (urban, semi-rural, remote rural) [28]. information to increase the reach of the service. A semi-structured topic guide was used that covered: The UK benefits system is designed to provide finan- benefits related issues; the impact of cancer on work, cial assistance for people with health problems, as well family and finances; and, the impact of the welfare rights as help for carers, those with children and those on low service. All participants agreed to their interviews being incomes. Different benefits and rules apply to those digitally recorded and they were transcribed in full. above and below state pension age. For those aged 65 Interview duration ranged from 22 to 100 minutes. and over, Attendance Allowance (AA) can be claimed; Observational field notes were taken of any factors that those below 65 who require care and attention can influenced the interview, such as level of ill-health or claim Disability Living Allowance (DLA) and those who contribution of partner/carer. are unable to work can claim Employment Support As this paper reports on interim findings, we did not Allowance (ESA) (formerly Incapacity Benefit). Impor- seek to reach data saturation in all thematic categories, tantly, AA and DLA are not means tested. Most other but we reached saturation in the categories reported. benefits are means tested and there is a complex net- The sample size of 22 is justified on the basis that con- work of benefits that individuals may or may not be sistent findings were being made in the key categories entitled to as a result of changing circumstances that are the topic of this paper, namely: impact of can- brought about by ill health. Previous work has high- cer diagnosis on finance; impact of welfare rights advice lighted the need for expert knowledge to negotiate the services; and, accessing welfare rights advice services. welfare benefits system on behalf of individuals with health problems [15,26]. The UK benefits system has Analysis special social security rules to accommodate rapidly pro- Each of the transcripts were read and re-read by two gressing terminal cancers where life expectancy is six members of the team (EN and SM) and a conceptual Moffatt et al. BMC Health Services Research 2010, 10:259 Page 4 of 12 http://www.biomedcentral.com/1472-6963/10/259 framework was devised. Coding was undertaken by one Table 1 Participants’ demographic and health information person (EN) using the coding procedure in Nvivo Ver- sion 7 [29], interview elements that were difficult to Category of information collected Number of participants code were discussed with SM. The data were coded and IMD Quintile [16] 1 (highest deprivation) 7 charted systematically using the Framework method [30] and the resulting typologies discussed by SM, EN and CE. This method of organising the data allows partici- pants’ circumstances, experiences and views to be com- 5 (lowest deprivation) 0 pared within and across groups in a framework derived from their own accounts. Constant comparison [31,32] Rural/Urban 3 (Village-sparse) 1 and deviant case analysis [33] were used for internal Indicator [28] validation [34]. 5 (Urban-less sparse) 9 6 (Town & Fringe-less 7 Results sparse) Twenty two interviews were undertaken between 7 (Village-less sparse) 5 January and June 2009, 11 men and 11 women. Seven- teen participants were interviewed alone, four people Employment status Back to work 1 with carers present and one carer was interviewed In work part time over 16 1 alone. Participants ranged in age from 35 to 83 and all hours were white English speakers. Table 1 shows demo- Year off work to care 1 graphic and health information of the study participants. Off work long term (cancer) 4 Most participants came from areas with higher levels of Off work short term (cancer) 4 deprivation and there were no participants living in Off work long term (other 3 morbidity) areas of lowest deprivation. Participants resided in a Unsure 1 range of types of area including urban, semi-rural and Retired (over state pension 7 rural, although fewest came from the most rural loca- age) tions. Most participants were not in paid work or unable to work at the time of the interview, one participant was Cancer Type Bile Duct 1 in part time work and one participant had recently Breast 4 returned to work following treatment. Some of those off Bowel 2 work due to cancer intended this to be for a relatively Lymphoma 2 short-term period; for others this was long term. Partici- Lung 3 pants experienced a wide range of types of cancer. Melanoma 1 While we are primarily concerned with reporting the Myeloid leukaemia 1 impact of the welfare rights advice service, we contex- Oesophageal 1 tualise this by describing participants’ accounts of the Parotid gland 1 financial impact of a cancer diagnosis, and we conclude Prostate 2 the results section with accounts of the existing barriers Spine 1 to claiming benefit entitlements. Thyroid 1 Tongue 1 Impact of cancer diagnosis on finance Not stated 1 The severity of the financial impact of a diagnosis of cancer differed depending on the circumstances of the household. For a small group of respondents, the cancer The stress of the diagnosis and ensuing treatment was trajectory did not have any financial impact on their compounded for some people by financial stress. For lives. This was almost wholly in couple households those of working age, circumstances differed consider- where a working partner earned a high income and/or ably depending on the employer and type of employ- the individual was well covered by private health insur- ment.Ingeneral,those in better paid jobs were more ance and/or mortgage protection, likely to have health insurance or mortgage protection He’s a top earner (husband) and we did have insur- policies, and those working in the public sector had ance ... and that’swhen wegot themoney ... andit’s more generous sickness benefit packages, been a big, big help ... So financially we’re not struggling I was fortunate because I work for the [public sector] at all. (P057, female, aged between 35-39) and we get full pay [for 6 months] and half pay [for 6 Moffatt et al. BMC Health Services Research 2010, 10:259 Page 5 of 12 http://www.biomedcentral.com/1472-6963/10/259 months], a lot of people aren’t in that position. They The shock of a cancer diagnosis and the prospect of come off work and they’re just getting sickness benefit ... the ensuing treatment was participants’ foremost con- so you know it does impact on your whole life really you cern. Financial worries did not immediately register as know, financially as well as emotionally and physically. participants were too busy dealing with the impact of (P097, female, aged between 45-49, returned to work their diagnosis. Several individuals recounted how they following cancer treatment) were too shocked and emotionally distressed to consider This position was in stark contrast to those who did the need to inform relevant agencies about their chan- not qualify for occupational sickness benefits and who ged circumstances and moreover, were reluctant to dis- had to rely on Statutory Sick Pay or Employment Sup- cuss their health problems with strangers over the port Allowance once cancer was diagnosed and treat- telephone. Most participants felt that the period close to ment took place, diagnosis was not a good time to deal with financial It’s a devastating thing, you can’twork, youcan’tand issues. However, for some people, there was an impera- it’s hard to pay your bills. It’s a hard enough worry can- tive to get to grips with the various benefits related cer itself, without having to worry about money as well. agencies in order to ensure that they did not miss out That’s the major thing with cancer, apart from obviously on benefit entitlements, nor fall foul of the system by having the cancer, that’s top priority is the financial side. continuing to claim for benefits for which their diagno- (P046, male, aged between 35-39, self-employed, stopped sis disqualified them, work for treatment, having to re-start business) Obviously it’s so upsetting when you get diagnosed with Participants spoke about the difficulties they encoun- cancer, I didn’t even contact the working tax credits and tered when trying to manage on a significantly reduced the welfare rights advisor said you have to do this and income prior to receiving their full benefit entitlement. do that and do the other ... So that was a big help, I A number of participants appeared to be managing hadn’t even contacted the people to say I wasn’tworking financially only because of the additional finances that anymore, you know, the Job Centre. (P046, male, aged resulted from the assistance of the welfare rights between 35-39) advisors, Cancer treatment entailed considerable expense for I was just on the Statutory Sick Pay ... We were mana- some individuals. Petrol and parking costs for hospital ging becausemywifeearns quitealotofmoney ... she’s visits, additional heating costs, dietary needs, clothing not too badly off ... You know once you stop earning it’s needs and trying to make ends meet on a lower arealblow... it’sa bigdrop, so it [gaining extramoney income were some of the examples cited by partici- through Disability Living Allowance] has cushioned it a pants. A number of people outlined the ways in which bit you know. (P119, male, aged between 55-59) they cut back on their expenditure, such as, buying Most individuals interviewed suffered a considerable cheaper brands of food, economising on other house- drop in their household income and/or significant addi- hold bills, reducing social and leisure activities. Some tional expenditure as a result of their cancer diagnosis, individuals borrowed cash from other family members. and this was particularly severe for those on low The small number of participants with children spoke incomes whether below or above state pension age. A about trying to maintain a sense of normality and rou- number of working age participants had young children tine, which often meant continuing with activities such at home and several were the ‘main’ earner (i.e. the as sports and music that usually involved some earner of the highest salary in the household). For those expense, of working age, the financial impact could be severe as a Well, we forked out for a recorder and book, and you result of a period of interruption from work or job loss. don’tliketosay no becauseofwhat’s going on around This was particularly the case for those who were self- the home as well. (P090, female, aged between 35-39) employed without illness insurance and those in low paid jobs and jobs without sickness benefits, Impact of welfare rights advice services (i) Process of It’s hard not getting any money in. My wife had to obtaining advice increase her hours a little bit at work ... which she didn’t The welfare rights advice service operated through two want to, she wanted to spend more time at home with main processes that facilitated access to benefit entitle- me so ... it’s hard, very hard. (P046, male, aged between ments, firstly, providing knowledge about entitlement 35-39) and secondly, assisting with the procedure of making Ithink when you’re feeling poorly, if you’ve got money benefit claims. Once benefit entitlement was established, worries it brings you down a little bit further. I think practical assistance to claim was key, particularly form when you haven’t got the worry you can sort of concen- filling and ongoing advice. Those with cancer spoke trate on getting yourself sorted as well as you can. (P003, about a number of physical and emotional problems female, aged between 70-74) resulting from their conditions and treatment (pain, Moffatt et al. BMC Health Services Research 2010, 10:259 Page 6 of 12 http://www.biomedcentral.com/1472-6963/10/259 tiredness, difficulty concentrating, anxiety, depression) Table 2 Factors associated with accessing welfare rights advice services which made it unlikely that, without assistance, they would be able to complete complex forms and deal with Factors elicited at interview Number of participants the ensuing bureaucracy, Some benefit(s) already in place prior to Let’s face it, if you’re recovering from cancer, money specialist service isn’t exactly the main thing you worry about ... I mean it Yes 11 took me four or five months to even think straight. (P021, No 11 male, aged between 70-74) Number of benefits obtained per person It would have been a nightmare to be honest ... finding out what I could have claimed and where, who to ask what, you know, em plus I mean, the form filling. The form filling was the other thing. The welfare rights advi- sorknewexactly howtofillthe formsin... youdon’t want to be doing that when you’re not very well, do you? How participant found out about welfare (P119, male, aged between 55-59) rights advice service Carers mentioned the degree of physical and emo- Advertising 3 tional strain that they were under that made it difficult Benefits Agency Worker 1 or impossible to pursue claims without assistance, Cancer Information Centre 1 ... because you do worry about the money side of things Cancer Specialist Nurse 4 and um the forms are just horrendous. And you don’t District Nurse 1 know which way to sort of turn, but when you’ve got Hospital information pack 1 somebody there to help and advise you it’s brilliant. Macmillan Nurse 5 Because it does take the pressure off you.(C006, female Macmillan Support Worker 1 carer, aged between 50-54) Support Group 2 Although some participants were prepared to com- Unsure 1 plete the application process themselves, they were a Word of mouth 1 minority, and this was a view held only among those Work colleague 1 who had been diagnosed for some time. However, even Referral to welfare rights service among those prepared to apply for benefits themselves, Benefits Agency Worker 1 the main barrier to doing so was lack of knowledge Cancer Information Centre 1 about entitlements, Cancer Specialist Nurse 1 Carer: If we’d been told about it [benefit entitlement] Family/friend 5 we would have [applied ourselves] because, you know, Macmillan Nurse 4 we’re quite into doing things ourselves. Macmillan Support Worker 1 Partner: The surgery [GP] has a mass of leaflets but, Self 8 er, which we look through occasionally when we’re there, Unsure 1 but none of them seem to have anything to do with Location of welfare rights advice grants, benefits. (PO15, male, aged between 75-79) Cancer Information Centre 4 As Table 2 shows, half of the participants had already Home 17 received one or more benefits as a result of other ser- Telephone 1 vices, most commonly the Macmillan Cancer Specialist Approximate time between diagnosis and nurses. Most of these benefits were specific to health, receipt of advice often Disability Living Allowance or Attendance Allow- Same Day 2 ance. Despite already having some benefits in place, 2-4 weeks 1 these participants remained eligible for subsequent ben- 1-6 months 5 efits, emphasising the need for specialist welfare rights 6-12 months 2 services with expertise in the entire benefits system Over 2 years 4 which is both complex and ever-changing. 10+ years 2 Three respondents did not obtain successful out- Unsure 6 comes from the claims made on their behalf. Some individuals did not qualify because of the level of their treatment, but not having sufficiently high health/care incomes and assets; others were on relatively low needs to qualify for health related benefits. Secondly in incomes but did not qualify for a number of reasons. the case where a partner continued to work which pre- Firstly, being unable to work because of cancer cluded them from obtaining means tested benefits. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 7 of 12 http://www.biomedcentral.com/1472-6963/10/259 Thirdly, ineligibility resulting from insufficient Having described the impact of welfare rights services, National Insurance payments (particularly in the case we conclude the results section by examining the factors of those in education or training). However, despite that impeded individuals’ access to welfare rights advice not receiving any monetary assistance, the individuals and the ways in which study participants accessed these concerned found it helpful to have expert advice and services. someone to assist them with the process of checking what they might be entitled to, Barriers to accessing the benefits system I was told initially that there probably wasn’t anything Lack of knowledge of available benefits was the greatest that I could get, which is actually how it’s turned out. I single barrier. Most participants recounted how they did mean that’s not the fault of Macmillan, it’s obviously, in not know that there were benefits available to them and my opinion, the fault of the system if you like. I think it’s therefore would not think to claim, disappointing when you’ve worked your entire life and There’s no means of knowing what you’re entitled to or sort of in the back of your mind, you think well if I’mill what you’re not. (P021, male, aged between 70-74) or if somethinghappens,atleast,you know,weget this Iwouldn’t have applied for them [benefits] off my own benefit of some kind and then it’s not there, that is pretty back because as I say, I didn’t know I was entitled to damning. (P156, male, aged between 60-64) anything. (P036, female, aged between 45-49) A number of participants were already in receipt of (ii) Outcome of obtaining welfare rights advice benefits prior to having a diagnosis of cancer. Despite The income generated as a result of welfare rights this, help from the welfare rights advisers was required advice enabled people to afford necessities and addi- in order to check their current benefit status and tional items that were required as a result of a diagnosis changes in entitlement as a result of cancer. Those of cancer. The money was used in a number of ways already receiving benefits were no more likely to pursue and included: offsetting additional costs associated with a benefit claim independently than those not, nor were cancer (travel and parking costs, heating bills, dietary they more likely to be aware of their entitlement to needs, clothing needs due to weight loss/gain); lessening benefit. the impact of loss of earnings or unemployment; provid- It was common knowledge among most of our partici- ing a safety net while individuals negotiated with com- pants that many millions of pounds of benefits in the panies over their health insurance claims. While UK are unclaimed every year. However, the general pub- financial stress could not be relieved for all participants, licity about benefits did not appear to alert participants for the small number of individuals who did not qualify to their entitlements. The lack of available information for additional income, the fact that they had received that people could understand and then act on was high- expert advice and had all avenues explored gave some lighted as a major concern. Particularly among those for reassurance. All individuals valued knowing about the whom it was some time between diagnosis and receiving service and having somewhere to turn should their cir- benefits advice, there was a view that if professionals did cumstances change, not alert them to benefit entitlement, then people would But without the help I definitely think it would have assume they were not entitled, been a struggle for everybody. I mean we have good I mean we see all these adverts off the TV about peo- families and all that, but that little bit, the extra money ple aren’t claiming their benefits, but if you don’tknow has been a godsend. And as far as I’mconcerned has what the benefits is, it’s not very helpful. (C005, female, taken a lot of pressure off my illness. (P106, male, aged caring for partner with cancer) between 55-59) It shocked me that nobody had ever told me about it ... It takes the pressure off ... you know it takes the worry you think that somebody would have told you about it. away. You can concentrate on getting yourself better or (P081, female, aged between 75-79) making your life as comfortable as you can ... it’sone This last comment relates to a point raised by a num- less thing to worry about ... It gets one of your main con- ber of participants concerning the number of profes- cerns covered if you like. I just know it would have been sionals that they were in contact with who did not alert bad. It would have just been, you know ... I think the them to any information about benefit entitlements. A worry would have killed us off, not the cancer.(P017, commonly held view was that if no-one informed them female, aged between 65-69) of the possibilities of welfare entitlements, then there The range of emotions resulting from cancer diagnosis would be no entitlement. and treatment was, for some individuals, compounded In describing their lack of knowledge about their own by worries about finance both in the immediate and eligibility for benefits, a number of participants, particu- longer term. larly those over retirement age, discussed at some length Moffatt et al. BMC Health Services Research 2010, 10:259 Page 8 of 12 http://www.biomedcentral.com/1472-6963/10/259 attitudinal factors that influenced their propensity to getting away with it ... like I say when I had the [serious claim (had it been left to them alone). Values of hard illness], a genuine illness ... I never claimed anything all work, ‘making do’ and self reliance were narrated by these years because I’d always thought of myself as not several participants. Most recounted how they had having a disability even though I knew I had ... people worked hard all their lives and avoided claiming bene- had been telling us for months, ‘You should claim,’ and fits, despite periods of unemployment. Moreover, many eventually I did go and it was so disheartening when I related unpleasant dealings with the ‘Social Security’ sys- had a genuine illness and I got turned down. (P078, tem in the past. male, aged between 50-54) It’s just this stigma attached, oh you’re claiming this, A number of factors acted as barriers to obtaining but I think now I’ve got to the point where it does help, benefit entitlements. Lack of knowledge and information even with the shopping, so I would advise anyone, yes do about entitlements were the greatest barriers. There claim if you need it, because it does help towards the were also a number of attitudinal factors that appeared financial side ... you just have to swallow your pride ... to relate to lifetime experiences, concerns about stigma it ’s really good they ’ve got things in place like that. and scrounging, compounded by personal awareness (P057, female, aged between 35-39) and campaigns about benefit fraud. However, when Compounding these views, were beliefs about the assisted to claim, no individuals refused to take up their extent and severity of illness. Some participants felt that entitlements. Having outlined barriers, we turn finally, they were not as ill as others they had known or cur- to describe the ways in which participants accessed this rently knew and therefore notgenuinely deservingof welfare rights service. health-related benefits, despite in some cases serious ill- ness and prognoses. These feelings were, for some, Accessing welfare rights advice bound up with the process of accepting and dealing As showninTable 2, participants foundout aboutthe with illness; the receipt of benefits symbolising an inabil- service in a number of ways, mostly from a professional ity to cope with the financial aspects of life that had pre- including Benefits Agency staff, Macmillan nurses, can- viously been managed prior to becoming ill with cancer, cer specialist nurses and district nurses. This indicates Carer: It makesussound thick, butmyhusband the importance of the integration of services for people always said, oh I’m not bad enough. with cancer, alerting them to services that they can call Partner: Well, it’s partly my attitude ... I fight all along on when needed. Referral to the service included both to try to assume that I can cope with [illness] easily ... self-referral and referral by a professional or voluntary when I go along to the surgery or anywhere, hospital, sector staff member. Therewerethereforeanumberof whatever, I look around at all the other people in the routes to accessing this service and some individuals waiting area and I feel a bit of a fraud. (PO15, male, commented on how varied knowledge about welfare aged between 75-79) rights advice services could be depending on where they Accounts of ‘stigma’, ‘sponging’, ‘pride’ and ‘deserving’ happened to be receiving treatment, were cited by a number of people as barriers to seeking When I was at [named] hospital, I just didn’tsee any- benefits. None of the interviewees in this study, how- body. As soon as I was at [different hospital] there ever, refused to apply for benefits when this was sug- seemed to be somebody straight there ... as soon as you gested by the welfare rights advisor. Yet, a number of walked in, what can we do to help? ... [welfare rights participants mentioned cases of people they knew who advice] didn ’tseemtobea standard procedureat were claiming in the absence of a ‘genuine’ illness. Parti- [named] hospital. (P058, male, aged between 50-59) cipants could not understand how people could get Most participants were seen in their own homes, and away with this and blamed the individuals falsely claim- this was particularly suitable for individuals who were ing, those sanctioning claims, but also the system itself. unwell and fatigued from treatment (many of whom Thus, they wished to distance themselves from the sys- were having to travel long distances for this). tem, but also from those non-genuine claimants, who Great. You know in your home environment. Em, it’sa they felt brought the whole system into disrepute. Parti- much better, you know, that she actually saw us here, cipants appeared to distinguish fairly clearly in their you know. You’re more relaxed and, you know, I had all own minds between genuine and non-genuine claims, the paperwork here. (P119, male, aged between 55-59) and invoked a strong sense of unfairness when they All participants agreed that welfare rights services thought that people were abusing they system, should be available for people affected by cancer, and The amount of people I knew who never had any ill- that this should not be something that medical staff ness and they were just pulling the wool over the doctor’s ought to deal with. Participants were uniform in their eyes was serious ... I mean they must tell some shocking views about the characteristics of such services - that lies to the doctors ... I don’t agree with it, but they were they should be proactive, offer practical help with Moffatt et al. BMC Health Services Research 2010, 10:259 Page 9 of 12 http://www.biomedcentral.com/1472-6963/10/259 information about entitlements and active assistance to effects of cancer diagnosis and treatment presented a claim. Participants’ views about the best time to provide further barrier, and few participants felt well enough information about the advice or advice itself varied and (physically and emotionally) to undertake the process of ranged across: point of diagnosis; at the bedside while claiming themselves. The welfare rights advice service recovering from surgery; at the point of discharge; and, was valued by participants in a number of ways: alerting after chemotherapy. These opinions broadly reflected people to their entitlements; processing claims; and individual circumstances as well as medical treatment dealing with the complex bureaucracies that surround and participants’ recollections of how they had felt dur- benefits. The additional monies obtained compensated ing their period of treatment. What came across to varying degrees for extra expenses related to illness strongly was that welfare rights services were regarded and loss of earnings. as an important part of non-medical care for people This study adds to the existing qualitative literature with cancer; comparisons were drawn with other non- about the financial impact of cancer on individuals and medical services that exist to assess people’s readiness to their families and is one of the first that has included a cope with their illnesses on leaving medical care, range of cancer types, people below and above state ...if you’re going home from hospital or somebody was pension age and individuals from urban, semi-rural and in the hospital doing the care thing, coming to the bed rural areas. Caution must always be exercised in draw- and saying, right you’re going home now, just the same ing conclusions from small scale qualitative studies, par- as an old person who’s assessed when they come home to ticularly one with the range of case variability present in see if they can boil a kettle ... (P106, male, aged, between this sample [36]. In terms of the sampling, the study 50-59) does not include individuals from ethnic minority The final row of Table 2 shows participants’ estimates groups or people whose first language is not English, of the time between diagnosis and their receipt of wel- although evidence would suggest that these groups have fare rights advice, highlighting great variation. Those even greater difficulties accessing benefits than who had been eligible, but not received benefits for the white majority population [37]. Moreover, given that years or months reflects a reality for many people with the sample was drawn from people accessing the welfare cancer; without specialist services, there will be substan- rights service, the findings are derived from people tial non uptake of benefit entitlement. Those who more likely to be affected by financial strain and stress received advice within a matter of days or months were after cancer. Methodologically, best practice has been participants who were recently diagnosed and for whom followed in fieldwork, data analysis and interpretation referral to the new service was operating efficiently. [34,36,38,39] and two individuals (EN, SM) were closely Those accessing the service overcame previously men- involved with data analysis and interpretation to jointly tioned barriers to claiming their entitlements. A range verify the findings and constantly relate interpretations of factors involved in facilitating access have been iden- back to the data. Rather than make direct generalisa- tified (Table 2). Health professionals and commissioners tions from the data, we draw out the implications from need to give these careful consideration in order that our analysis and make inferences about how these find- high quality services tailored to the needs of people with ings might be transferred and applied in other settings cancer can be provided. and practices [30]. The findings of this study are likely to be of relevance to people affected by cancer in the Discussion UK, although may be less relevant to localities with less Participants’ accounts capture the stress of cancer and widespread and severe socio-economic deprivation. Ele- the ways in which financial worries may compound ments of more generic relevance beyond the UK may be dealing with diagnosis and treatment. Our findings bear the added burden resulting from the financial conse- out those of a larger study into the psycho-social needs quences of cancer diagnosis and treatment. Relating the of cancer patients which found that financial needs were findings to the limited available literature backs up most likely to be unmet and that for some of those existing research that individuals in the UK struggle experiencing financial hardship, ‘this aspect of living with the benefits system when left to deal with it alone with cancer was almost worse than the disease itself’ [40]. Furthermore, people affected by cancer in the UK [35] (p602). The extent of financial problems varied miss out on benefits to which they are entitled in the depending on individual circumstances, but had signifi- absence of specialist services [3,4] and that there are cant and long-term implications for a number of indivi- considerable additional costs associated with cancer duals and their families. Despite the existence of state treatment [22]. Uniquely, this studyhas alongitudinal benefits designed to assist people with health problems, element, and follow-up interviews are currently under- very few individuals knew about what might be available waywhich will enableamorein-depthexamination of and even fewer knew how to claim. Moreover, the the impact of the cancer trajectory on finances. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 10 of 12 http://www.biomedcentral.com/1472-6963/10/259 Our data demonstrate the impact that loss of earnings rights services for people with cancer to which health mayhaveon the economicwellbeing of people with and social care professionals should be able to refer. cancer and their families, as well as the additional This would enable professionals to concentrate on their expenditure that may accompany cancer treatment. core business, but ensures that patients obtain the There is a growing literature on the financial impact of advice and assistance that they require in financial mat- cancer [5,8,41,42] largely as a response to the increasing ters. Responsibility to refer would rest predominantly numbers of cancer survivors, and awareness of the long with health professionals, but provided adequately term implications of loss of earnings among those of resourced welfare rights services are available, this could working age. Low income families were more likely to become routine practice. experience financial hardship than people in high The data presented indicate that patients’ views dif- income groups and within households, ‘cancer in men fered regarding the optimal timing for referral and may result in greater financial difficulties than cancer advice and there is clearly no ‘one size fits all’ remedy to among women, although the effect will depend on this. However, given the repeated encounters that most breadwinner roles before diagnosis’ [8] (p4350). A recent people with cancer have with health care professionals, review of factors affecting cancer survivors’ employment opportunities abound for ensuring that individuals and work ability found that cancer survivors who were receive information about welfare rights advice services, older, with a lower level of education and in ‘blue collar’ are able to consider it and obtain a consultation. This jobs were less likely to be employed following treatment system avoids overburdening health care staff with non- [42]. The authors of this review, which did not include medical responsibilities and ensures that the advice any UK studies, acknowledge that the likelihood of given is expert and up to date. There is a clear role for returning to work is influenced by ‘the financial support health professional involvement in ensuring that the that a state offers for people with cancer’,aswellas topic of finance is raised with cancer patients as well as family resources and the psychological role of work in initiating onward referral to welfare rights advice ser- assisting recovery [42] (p450). The type of assistance vices (inthe UK,these maybeprovidedbythe local provided by various welfare states differs greatly [9] and authority, Citizen’s Advice Bureau or Macmillan Cancer the findings reported here illustrate the difficulties that Information Centres). Health professionals are not people with cancer in the UK face in accessing their equipped to offer sociolegal help, unless, as in the case state benefit entitlement. To the best of our knowledge, of Macmillan nurses, they have specialist training that is this has not been discussed elsewhere, and may be an regularly updated. Other health professionals do not issue that is specific to the UK welfare state system. have the expertise to give reliable and accurate informa- To date,asmallbodyofworkinthe UK hasshown tion, nor the time to do so. that financial worries can add to the stress of cancer The UK National Institute for Clinical Excellence diagnosis and treatment [3,4,40]. The findings of this (NICE) Guidance on Cancer Services recommends that study demonstrate why it is difficult for those affected ‘patients and carers should be offered assistance to by cancer to pursue benefit claims themselves, but that obtain benefits for which they are potentially eligible by welfare rights services transform patients’ experiences professionals who are informed and knowledgeable and provide access to much needed benefits. In the UK, about the benefits system’ [43] (p88) and recognises that it has been shown that a significant amount of income some needs of cancer patients can only be met by indi- was lost for terminally ill cancer patients [4] and lung vidualsoragenciesoutside theNHS.Thisstudy high- cancer patients [3] as a result of delays before claiming, lights the crucial role that welfare rights advice services despite all patients having several contacts with a range have in providing such assistance. Important areas for of health and social care professionals. Given that the further research include the psychological impact of eligibility rules are more straightforward for people who dealing with the financial stresses of cancer as well as are terminally ill, this suggests a professional failing to the impact of cancer on earnings and future employ- address holistically the full range of end of life issues. ment prospects for those of working age. This is perhaps a manifestation of the boundaries between the NHS and social services, reflecting what are Conclusions traditionally regarded as ‘medical’ versus ‘social’ issues, This study draws attention to the difficulties faced by compounded by the complexities of the benefit system people affected by cancer in the UK who do not receive itself. Although our findings rest on a small sample, this their full state benefit entitlement. The findings empha- study reinforces other work about the important role sise the benefits of a welfare rights advice service that is that welfare rights advice services have in facilitating administratively outside the NHS, but working closely access to state welfare benefits [15]. We believe that this with health and social care professionals who can make study adds to the evidence supporting dedicated welfare appropriate referrals. Such collaboration, founded on an Moffatt et al. BMC Health Services Research 2010, 10:259 Page 11 of 12 http://www.biomedcentral.com/1472-6963/10/259 3. Chapple A, Ziebland S, McPherson A, Summerton N: Lung cancer patients’ appreciation of the full needs of people with cancer, can perceptions of access to financial benefits: A qualitative study. British assist with the practical demands that arise from dealing Journal of General Practice 2004, 54(505):589-594. with the illness. Without such services, many people 4. 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The care component has three rates (lower, middle and Journal of Epidemiology and Community Health 2008, 62:3-6. higher), while the mobility component has two rates (lower and higher). 10. Adams J, White M, Moffatt S, Howel D, Mackintosh J: A systematic review ESA: Employment Support Allowance: Is paid on the grounds of of the health, social and financial impacts of welfare rights advice incapacity. There are two elements (i) contributory which is linked to delivered in health care settings. BMC Public Health 2006, 6:81. national insurance contributions and (ii) income related which is means 11. Acheson D: Independent Inquiry into Inequalities in Health. London: tested and can help with housing costs. It is paid to those people who have HMSO 1998. a limited capability to work due to disability or ill health. Claimants are 12. Wanless D: Securing Good Health for the Whole Population. London: placed in either the support group or the work related activity group, which HMSO 2004. determines the amount of ESA received. Special Rules: If a person is 13. Social Exclusion Unit: Excluded Older People. Social Exclusion Unit expected to live for six months or less, AA and DLA claims are prioritised, Interim Report. London: Office of the Deputy Prime Minister 2005. less information is required on the application form and the applicant does 14. Moffatt S, Mackintosh J, White M, Howel D, Sandell A: The acceptability not have to prove how much care they need. SSP: Statutory Sick Pay:An and impact of a randomised controlled trial of welfare rights advice earnings replacement for employees who are off work through illness. accessed via primary care: qualitative study. BMC Public Health 2006, Employers must pay this to their employees who satisfy all the qualifying 6:163. conditions. Working Tax Credits: Working Tax Credit tops up a working 15. Moffatt S, Scrambler G: Can welfare-rights advice targeted at older household’s income and helps with childcare costs (although this is limited). people reduce social exclusion? Ageing and Society 2008, 28:875-899. It is means-tested and usually only paid to families on low incomes. Job 16. Berthoud R, Blekesaune M, Hancock R: Ageing, income and living Centre: A government-funded employment agency facility and the social standards: evidence from the British household panel survey. Ageing and security office for working-age people. Typically provides resources to enable Society 2009, 29(7):1105-1122. the unemployed to find work and a system to advertise job vacancies for 17. Department for Work and Pensions: Households below average income employers. It also provides information about training opportunities for 2005/06. Department for Work and Pensions 2006. those who have been unemployed for some time. 18. National Audit Office: Tackling Pensioner Poverty: Encouraging take-up of entitlements. London: National Audit Office 2002. Acknowledgements 19. Quinn MJ, Babb P, Brock A, Kirby L, Jones J: Cancer trends in England and We would like to thank all those who took part in the interviews. For their Wales, 1950-1999. Studies on medical and population subjects, No 66. helpful comments on the paper, we thank Stephen Guy, Chris Graham, London: The Stationery Office 2001. Anna Knight, Ann Ryan and Mark Lloyd at Durham County Council and 20. Dano H, Andersen O, Ewertz M, Petersen JH, Lynge E: Socioeconomic Professor Martin White at Newcastle University. We are grateful for the status and breast cancer in Denmark. International Journal of Epidemiology valuable support given by Macmillan Cancer Support and County Durham 2003, 32(2):218-224. Primary Care Trust which made this study possible. 21. Rowan S: Trends in cancer incidence by deprivation. England and Wales 1999-2002. Health Statistics Quarterly 2007, 30. Authors’ contributions 22. Pearce S, Kelly D, Stevens W: “More than just money” - widening the SM initiated the study and in collaboration with Professor Martin White understanding of the costs involved in cancer care. Journal of Advanced obtained funding. SM designed the qualitative study, EN undertook Nursing 1999, 33(3):317-379. interviews and initial coding, analysis was undertaken jointly by SM, EN. Final 23. Indices of deprivation. 2007 [http://www.communities.gov.uk/documents/ interpretation was undertaken jointly by SM, EN and CE. SM wrote the first communities/pdf/733520.pdf], [Accessed 06.05.09]. draft of this paper, EN and CE commented on subsequent drafts. All authors 24. Association of Public Health Observatories and Department of Health: approved the final version. All authors are guarantors and accept full Health summary for County Durham Unitary Authority. 2009 [http:// responsibility for the conduct of the study and the contents of this paper. www.apho.org.uk/default.aspx?QN=HP_METADATA&AreaID=71130], [Accessed 21.01.10]. Competing interests 25. Northern and Yorkshire Cancer Registry and Information Service: County The authors declare that they have no competing interests. Durham PCT Factsheet. 2008 [http://www.nycris.nhs.uk/uploads/ doc576_109_PCTFactsheet NECN - 10 5ND County Durham PCT.pdf], Received: 2 February 2010 Accepted: 3 September 2010 [Accessed 21.01.10]. Published: 3 September 2010 26. Moffatt S, Higgs P: Charity or entitlement? Generational Habitus and the Welfare State Among Older People in North East England. Social Policy References and Administration 2007, 41(5):449-464. 1. Macmillan Cancer Relief: The unclaimed millions. 2004 [http://www.cpag. 27. Macmillan Cancer Relief: Access denied. 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Ritchie J, Lewis J, Eds: Qualitative Research Practice. A Guide for Social Scientists. London: Sage 2003. 31. Glaser B, Strauss A: The Discovery of Grounded Theory. Chicago: Aldine 32. Silverman D: Doing qualitative research. London: Sage 2000. 33. Clayman SE, Maynard DW: Ethnomethodology and Conversation Analysis. In Situated Order: Studies in the Social Organisation of Talk and Embodied Activities. Edited by: ten Have P, Psathas G. Washington, D.C. University Press of America; 1995:1-30. 34. Barbour RS: Checklists for improving rigour in qualitative research: the case of the tail wagging the dog? British Medical Journal 2001, 322:1115-1117. 35. Soothill K, Morris SM, Harman J, Francis B, Thomas C, McIllmurray MB: The significant unmet needs of cancer patients: probing psychosocial concerns. Support Care Cancer 2001, 9:597-605. 36. Mays N, Pope C: Quality in qualitative health research. In Qualitative Research in Health Care. Edited by: Pope C, Mays N. London: BMJ Books; 2000:89-101. 37. Moffatt S, Mackintosh J: Older people’s experience of proactive welfare rights advice: qualitative study of a South Asian community. Ethnicity and Health 2009, 14(1):5-25. 38. Seale C: The Quality of Qualitative Research. Oxford: Blackwell 1999. 39. Barbour RS: The Newfound Credibility of Qualitative Research? Tales of Technical Essentialism and Co-Option. Qualitative Health Research 2003, 13(7):1019-1027. 40. Wilson K, Amir Z: Cancer and disability benefits: a synthesis of qualitative findings on advice and support. Psycho Oncology 2008, 17(5):421-429. 41. Chirikos T, Russell-Jacobs A, Cantor A: Indirect Economic Effects of Long- Term Breast Cancer Survival. Cancer Practice 2002, 2002(5):248-255. 42. Taskila T, Londbohm ML: Factors affecting cancer survivors’ employment and work ability. Acta Oncologica 2007, 46:446-451. 43. National Institute for Clinical Excellence: Improving supportive and palliative care for people with cancer (the manual). London: National Institute for Clincial Excellence 2004. Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/1472-6963/10/259/prepub doi:10.1186/1472-6963-10-259 Cite this article as: Moffatt et al.: “Done more for me in a fortnight than anybody done in all me life.” How welfare rights advice can help people with cancer. BMC Health Services Research 2010 10:259. Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Health Services Research Springer Journals

"Done more for me in a fortnight than anybody done in all me life." How welfare rights advice can help people with cancer

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Copyright © 2010 by Moffatt et al; licensee BioMed Central Ltd.
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Medicine & Public Health; Public Health; Health Administration; Health Informatics; Nursing Management/Nursing Research
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Abstract

Background: In the UK many people with cancer and their carers do not have easy access to the welfare benefits to which they are entitled adding further strain to the process of dealing with cancer. It is estimated that nine out of ten cancer patients’ households experience loss of income as a direct result of cancer, which, due to its socio- economic patterning disproportionately affects those most likely to be financially disadvantaged. In the UK proactive welfare rights advice services accessed via health care settings significantly increase benefit entitlement among people with health problems and this paper reports on a qualitative study examining the impact of a welfare rights advice service specifically designed for people affected by cancer and their carers in County Durham, North East England (UK). Methods: Twenty two men and women with cancer or caring for someone with cancer who were recipients of welfare rights advice aged between 35 and 83 were recruited from a variety of health care and community settings. Semi-structured interviews were undertaken and analysed using the Framework method. Results: Most of the participants experienced financial strain following their cancer diagnosis. Participants accessed the welfare rights service in a variety of ways, but mainly through referral by other professionals. The additional income generated by successful benefit claims was used in a number of ways and included offsetting additional costs associated with cancer and lessening the impact of loss of earnings. Overall, receiving welfare rights advice eased feelings of stress over financial issues at a time when participants were concerned about dealing with the impact of cancer. Lack of knowledge about benefit entitlements was the main barrier to accessing benefits, and this outweighed attitudinal factors such as stigma and concerns about benefit fraud. Conclusions: Financial strain resulting from a cancer diagnosis is compounded in the UK by lack of easy access to information about benefit entitlements and assistance to claim. Proactive welfare rights advice services, working closely with health and social care professionals can assist with the practical demands that arise from dealing with the illness and should be considered an important part of a holistic approach to cancer treatment. Background pressures are not often discussed with health profes- In the UK, many people with cancer and their carers do sionals [3,4]. Evidence shows that cancer is likely to not have easy access to the welfare benefits to which affect patients’ incomes although there appear to be dif- they are entitled [1]. This may result in difficulties ferential effects depending on the type of cancer [5] and affording the additional resources required to cope with whether those affected are still in employment or retired illness [2], as well as adding further strain to the process [6]. Surviving cancer is associated with unemployment of dealing with cancer. However, such financial [7] and loss of earnings disproportionately affects those in low income groups [8]. Recently, gender differences in income following cancer diagnosis and treatment * Correspondence: s.m.moffatt@ncl.ac.uk Institute of Health & Society, Faculty of Medical Sciences, Baddiley-Clarke have been observed. Cancer in men may result in Building, Newcastle University, Richardson Road, Newcastle upon Tyne, NE2 greater financial difficulties than cancer among women 4AX, UK Full list of author information is available at the end of the article © 2010 Moffatt et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 2 of 12 http://www.biomedcentral.com/1472-6963/10/259 (in couple households), but women’s earnings were health care system it is often unclear who, if anyone, lower after both their own and their spouses’ cancer [8]. has responsibility or capacity for dealing with the social In most developed countries, welfare states have aspects of illness. The boundaries between medical and developed systems to compensate for unemployment as social issues are often blurred, and there are no routi- a result of illness, although the level of recompense and nely available services with the expertise to deal with the means by which it may be accessed varies [9]. The sociolegal issues arising from ill-health. UK state welfare system has a series of means tested In theUK, theprevalenceofmostcancersissocio- and non-means tested benefits designed to assist those economically patterned; higher rates of most cancers are who have ongoing health problems, as well as benefits found among people from lower occupational classes aimed at those who cannot work (either temporarily or [19]. There are exceptions to this socio-economic pat- permanently) due to ill-health. However, each year in terning, most notably breast cancer [20,21]. It is the the UK, billions of pounds of benefits remain unclaimed case that in the UK, the prevalence of most cancers are [1]. Services have been developed to assist citizens to higher within lower socio-economic groups, who are claim their entitlements, although these are often ad hoc already most likely to be financially disadvantaged. How- and short term arrangements. Perhaps the most success- ever, it is also the case that those on relatively high ful of these are proactive welfare rights advice services incomes pre-diagnosis may experience significant accessed via health care settings, which have repeatedly declines in income. Research into the psycho-social been found to significantly increase benefit entitlement aspects of cancer found that patients with fewer social among those with health problems [10]. Within the UK, and economic resources had significantly higher levels assisting people to obtain their full welfare benefit enti- of need for practical help with matters such as form- tlement was advocated by the Acheson Report as an filling, transportand housework, andthathelp with intervention with the potential to reduce inequalities in financial matters was identified as a ‘significant unmet health [11] and has been recognised as an important need’ [22] (p601). Additionally, technological advances response to tackling social and health inequalities by the are leading to increased cure rates and longer survival. UK’s Treasury [12] and the Social Exclusion Unit [13]. These welcome advances can lead to prolonged periods Additional resources (whether financial or other mate- of illness and disability, in some cases leading to remis- rial benefits such as aids and adaptations) have been sion and in others, death. The cancer trajectory may shown to reduce stress, improve individuals’ ability to therefore be long, uncertain and complex and pose diffi- cope with health problems and improve quality of life culties in relation to benefit eligibility criteria, particu- [14,15]. Many people with long-term health conditions larly for those of working age. and their carers face considerable financial burdens as a Within the UK health and social care system, there is result of their illness. For those of working age, income therefore a strong case for facilitating access to welfare maydropbecauseoftimeoff work fortreatment,job rights advice for people with cancer and their families in loss or the difficulties associated with re-entering order to assist them to claim their entitlements. This employment [8]. For those over state pension age, the paper reports on interim findings from an evaluation of additional costs of dealing with ill-health while on a a dedicated welfare rights advice service for people fixed income can have serious financial implications affected by cancer developed as a result of collaboration [16]. In the UK, one in five people over the state pen- between Durham County Council in North East England sion age live in poverty [17] and there are currently 23 and Macmillan Cancer Support (a major UK charity that different types of benefit available to older people, many provides practical, medical and financial support and of which are linked in a complex network of entitle- campaigns for better cancer care). We focus on (i) the ments [18]. The National Audit Office has criticised the impact of a cancer diagnosis on finances, (ii) the impact UK benefits system as unnecessarily complex [18]. of welfare rights advice, and (iii) issues in accessing wel- In the UK, nine out of ten cancer patients’ households fare rights advice. experience loss of income as a direct result of cancer [1]. This may be due to temporary or permanent loss of Background to the welfare rights advice service and earningsaswellasthe additional costs associated with cancer related benefits cancer such as travel costs to treatment centres. Despite In June 2008 Durham County Council, in collaboration this, among people with cancer and their carers, there is with Macmillan Cancer Support appointed three experi- significant under claiming of health-related benefits that enced welfare rights advisors to provide a dedicated ser- has been attributed to a number of factors including: vice for people with cancer and their carers across lack of knowledge about benefit entitlements, the com- County Durham in North East England. County plexities of the benefits system and the lack of services Durham has a population of 504,900 that includes designed to facilitate access to benefits. Within the UK urban, semi-rural and remote rural populations, as well Moffatt et al. BMC Health Services Research 2010, 10:259 Page 3 of 12 http://www.biomedcentral.com/1472-6963/10/259 as areas of significant socio-economic deprivation and months or less. In practice, it appears that there is wide poor health. Around one third of the population of variationindoctors’ interpretation of the six-month life County Durham live in the most deprived areas of Eng- expectancy definition of terminal illness as well as diffi- land, with only ten percent living in the least deprived culties in predicting patients’ life expectancy [27]. Evi- areas [23]. Life expectancy in County Durham for males dence from people with lung cancer indicates that, and females and early deaths from cancer is worse than despite these procedures, many do not obtain the bene- the average for England [24]. In terms of cancer type, fits to whichtheyare entitled becausetheydid not the highest incidence rates in men are for lung, prostate receive timely advice [3]. and colorectal cancers; for women the highest incidence rates are for breast, lung and colorectal cancers [25]. Methods The welfare rights advice service was designed to be Research governance freely accessible, so that individuals could self refer, as Ethical approval was obtained from Sunderland NHS well as be referred by health, social care or voluntary Local Research Ethics Committee and research govern- sector professionals. The three staff are based in the ance approval from the Research Management and Gov- local authority offices, but work in various National ernance Unit of County Durham & Tees Valley PCT. Health Service (NHS) and voluntary sector locations throughout the county when providing advice. At its Sampling and interviews inception, the service was widely advertised to the public Between June 2008 and March 2009, 792 individuals and professionals and there are ongoing publicity events were seen by the welfare rights service. During their and talks to maintain the service profile. The welfare first welfare rights advice consultation, participants were rights advisors provide dedicated welfare rights services informed about the research study and completed a for people affected by cancer. These include: service baseline questionnaire covering basic demographic delivery in a range of health, social care and voluntary information (age, sex, education, employment status, sector settings, home visits, contact by email and tele- referral route). Participants were given an information phone. The service comprises a full welfare benefits sheet about the qualitative study and asked to consider check followed by assistance to claim entitlements, fol- whether they would be willing to take part in an inter- low-up work and representation at appeals and tribu- view about their experiences of the welfare rights ser- nals. The welfare rights advisors also undertake vice. Those who consented (N = 105) formed the outreach work to voluntary and community groups in sampling frame for this qualitative interview study. order to facilitate awareness among the wider public. As Purposive sampling was undertaken to achieve maxi- well as this, they carry out awareness training for health, mum variation on the basis of age, sex, type of cancer, social care and voluntary sector staff to increase referral index of multiple deprivation (based on postcode) [23] and rates and to enable these staff to deliver basic benefit residential location (urban, semi-rural, remote rural) [28]. information to increase the reach of the service. A semi-structured topic guide was used that covered: The UK benefits system is designed to provide finan- benefits related issues; the impact of cancer on work, cial assistance for people with health problems, as well family and finances; and, the impact of the welfare rights as help for carers, those with children and those on low service. All participants agreed to their interviews being incomes. Different benefits and rules apply to those digitally recorded and they were transcribed in full. above and below state pension age. For those aged 65 Interview duration ranged from 22 to 100 minutes. and over, Attendance Allowance (AA) can be claimed; Observational field notes were taken of any factors that those below 65 who require care and attention can influenced the interview, such as level of ill-health or claim Disability Living Allowance (DLA) and those who contribution of partner/carer. are unable to work can claim Employment Support As this paper reports on interim findings, we did not Allowance (ESA) (formerly Incapacity Benefit). Impor- seek to reach data saturation in all thematic categories, tantly, AA and DLA are not means tested. Most other but we reached saturation in the categories reported. benefits are means tested and there is a complex net- The sample size of 22 is justified on the basis that con- work of benefits that individuals may or may not be sistent findings were being made in the key categories entitled to as a result of changing circumstances that are the topic of this paper, namely: impact of can- brought about by ill health. Previous work has high- cer diagnosis on finance; impact of welfare rights advice lighted the need for expert knowledge to negotiate the services; and, accessing welfare rights advice services. welfare benefits system on behalf of individuals with health problems [15,26]. The UK benefits system has Analysis special social security rules to accommodate rapidly pro- Each of the transcripts were read and re-read by two gressing terminal cancers where life expectancy is six members of the team (EN and SM) and a conceptual Moffatt et al. BMC Health Services Research 2010, 10:259 Page 4 of 12 http://www.biomedcentral.com/1472-6963/10/259 framework was devised. Coding was undertaken by one Table 1 Participants’ demographic and health information person (EN) using the coding procedure in Nvivo Ver- sion 7 [29], interview elements that were difficult to Category of information collected Number of participants code were discussed with SM. The data were coded and IMD Quintile [16] 1 (highest deprivation) 7 charted systematically using the Framework method [30] and the resulting typologies discussed by SM, EN and CE. This method of organising the data allows partici- pants’ circumstances, experiences and views to be com- 5 (lowest deprivation) 0 pared within and across groups in a framework derived from their own accounts. Constant comparison [31,32] Rural/Urban 3 (Village-sparse) 1 and deviant case analysis [33] were used for internal Indicator [28] validation [34]. 5 (Urban-less sparse) 9 6 (Town & Fringe-less 7 Results sparse) Twenty two interviews were undertaken between 7 (Village-less sparse) 5 January and June 2009, 11 men and 11 women. Seven- teen participants were interviewed alone, four people Employment status Back to work 1 with carers present and one carer was interviewed In work part time over 16 1 alone. Participants ranged in age from 35 to 83 and all hours were white English speakers. Table 1 shows demo- Year off work to care 1 graphic and health information of the study participants. Off work long term (cancer) 4 Most participants came from areas with higher levels of Off work short term (cancer) 4 deprivation and there were no participants living in Off work long term (other 3 morbidity) areas of lowest deprivation. Participants resided in a Unsure 1 range of types of area including urban, semi-rural and Retired (over state pension 7 rural, although fewest came from the most rural loca- age) tions. Most participants were not in paid work or unable to work at the time of the interview, one participant was Cancer Type Bile Duct 1 in part time work and one participant had recently Breast 4 returned to work following treatment. Some of those off Bowel 2 work due to cancer intended this to be for a relatively Lymphoma 2 short-term period; for others this was long term. Partici- Lung 3 pants experienced a wide range of types of cancer. Melanoma 1 While we are primarily concerned with reporting the Myeloid leukaemia 1 impact of the welfare rights advice service, we contex- Oesophageal 1 tualise this by describing participants’ accounts of the Parotid gland 1 financial impact of a cancer diagnosis, and we conclude Prostate 2 the results section with accounts of the existing barriers Spine 1 to claiming benefit entitlements. Thyroid 1 Tongue 1 Impact of cancer diagnosis on finance Not stated 1 The severity of the financial impact of a diagnosis of cancer differed depending on the circumstances of the household. For a small group of respondents, the cancer The stress of the diagnosis and ensuing treatment was trajectory did not have any financial impact on their compounded for some people by financial stress. For lives. This was almost wholly in couple households those of working age, circumstances differed consider- where a working partner earned a high income and/or ably depending on the employer and type of employ- the individual was well covered by private health insur- ment.Ingeneral,those in better paid jobs were more ance and/or mortgage protection, likely to have health insurance or mortgage protection He’s a top earner (husband) and we did have insur- policies, and those working in the public sector had ance ... and that’swhen wegot themoney ... andit’s more generous sickness benefit packages, been a big, big help ... So financially we’re not struggling I was fortunate because I work for the [public sector] at all. (P057, female, aged between 35-39) and we get full pay [for 6 months] and half pay [for 6 Moffatt et al. BMC Health Services Research 2010, 10:259 Page 5 of 12 http://www.biomedcentral.com/1472-6963/10/259 months], a lot of people aren’t in that position. They The shock of a cancer diagnosis and the prospect of come off work and they’re just getting sickness benefit ... the ensuing treatment was participants’ foremost con- so you know it does impact on your whole life really you cern. Financial worries did not immediately register as know, financially as well as emotionally and physically. participants were too busy dealing with the impact of (P097, female, aged between 45-49, returned to work their diagnosis. Several individuals recounted how they following cancer treatment) were too shocked and emotionally distressed to consider This position was in stark contrast to those who did the need to inform relevant agencies about their chan- not qualify for occupational sickness benefits and who ged circumstances and moreover, were reluctant to dis- had to rely on Statutory Sick Pay or Employment Sup- cuss their health problems with strangers over the port Allowance once cancer was diagnosed and treat- telephone. Most participants felt that the period close to ment took place, diagnosis was not a good time to deal with financial It’s a devastating thing, you can’twork, youcan’tand issues. However, for some people, there was an impera- it’s hard to pay your bills. It’s a hard enough worry can- tive to get to grips with the various benefits related cer itself, without having to worry about money as well. agencies in order to ensure that they did not miss out That’s the major thing with cancer, apart from obviously on benefit entitlements, nor fall foul of the system by having the cancer, that’s top priority is the financial side. continuing to claim for benefits for which their diagno- (P046, male, aged between 35-39, self-employed, stopped sis disqualified them, work for treatment, having to re-start business) Obviously it’s so upsetting when you get diagnosed with Participants spoke about the difficulties they encoun- cancer, I didn’t even contact the working tax credits and tered when trying to manage on a significantly reduced the welfare rights advisor said you have to do this and income prior to receiving their full benefit entitlement. do that and do the other ... So that was a big help, I A number of participants appeared to be managing hadn’t even contacted the people to say I wasn’tworking financially only because of the additional finances that anymore, you know, the Job Centre. (P046, male, aged resulted from the assistance of the welfare rights between 35-39) advisors, Cancer treatment entailed considerable expense for I was just on the Statutory Sick Pay ... We were mana- some individuals. Petrol and parking costs for hospital ging becausemywifeearns quitealotofmoney ... she’s visits, additional heating costs, dietary needs, clothing not too badly off ... You know once you stop earning it’s needs and trying to make ends meet on a lower arealblow... it’sa bigdrop, so it [gaining extramoney income were some of the examples cited by partici- through Disability Living Allowance] has cushioned it a pants. A number of people outlined the ways in which bit you know. (P119, male, aged between 55-59) they cut back on their expenditure, such as, buying Most individuals interviewed suffered a considerable cheaper brands of food, economising on other house- drop in their household income and/or significant addi- hold bills, reducing social and leisure activities. Some tional expenditure as a result of their cancer diagnosis, individuals borrowed cash from other family members. and this was particularly severe for those on low The small number of participants with children spoke incomes whether below or above state pension age. A about trying to maintain a sense of normality and rou- number of working age participants had young children tine, which often meant continuing with activities such at home and several were the ‘main’ earner (i.e. the as sports and music that usually involved some earner of the highest salary in the household). For those expense, of working age, the financial impact could be severe as a Well, we forked out for a recorder and book, and you result of a period of interruption from work or job loss. don’tliketosay no becauseofwhat’s going on around This was particularly the case for those who were self- the home as well. (P090, female, aged between 35-39) employed without illness insurance and those in low paid jobs and jobs without sickness benefits, Impact of welfare rights advice services (i) Process of It’s hard not getting any money in. My wife had to obtaining advice increase her hours a little bit at work ... which she didn’t The welfare rights advice service operated through two want to, she wanted to spend more time at home with main processes that facilitated access to benefit entitle- me so ... it’s hard, very hard. (P046, male, aged between ments, firstly, providing knowledge about entitlement 35-39) and secondly, assisting with the procedure of making Ithink when you’re feeling poorly, if you’ve got money benefit claims. Once benefit entitlement was established, worries it brings you down a little bit further. I think practical assistance to claim was key, particularly form when you haven’t got the worry you can sort of concen- filling and ongoing advice. Those with cancer spoke trate on getting yourself sorted as well as you can. (P003, about a number of physical and emotional problems female, aged between 70-74) resulting from their conditions and treatment (pain, Moffatt et al. BMC Health Services Research 2010, 10:259 Page 6 of 12 http://www.biomedcentral.com/1472-6963/10/259 tiredness, difficulty concentrating, anxiety, depression) Table 2 Factors associated with accessing welfare rights advice services which made it unlikely that, without assistance, they would be able to complete complex forms and deal with Factors elicited at interview Number of participants the ensuing bureaucracy, Some benefit(s) already in place prior to Let’s face it, if you’re recovering from cancer, money specialist service isn’t exactly the main thing you worry about ... I mean it Yes 11 took me four or five months to even think straight. (P021, No 11 male, aged between 70-74) Number of benefits obtained per person It would have been a nightmare to be honest ... finding out what I could have claimed and where, who to ask what, you know, em plus I mean, the form filling. The form filling was the other thing. The welfare rights advi- sorknewexactly howtofillthe formsin... youdon’t want to be doing that when you’re not very well, do you? How participant found out about welfare (P119, male, aged between 55-59) rights advice service Carers mentioned the degree of physical and emo- Advertising 3 tional strain that they were under that made it difficult Benefits Agency Worker 1 or impossible to pursue claims without assistance, Cancer Information Centre 1 ... because you do worry about the money side of things Cancer Specialist Nurse 4 and um the forms are just horrendous. And you don’t District Nurse 1 know which way to sort of turn, but when you’ve got Hospital information pack 1 somebody there to help and advise you it’s brilliant. Macmillan Nurse 5 Because it does take the pressure off you.(C006, female Macmillan Support Worker 1 carer, aged between 50-54) Support Group 2 Although some participants were prepared to com- Unsure 1 plete the application process themselves, they were a Word of mouth 1 minority, and this was a view held only among those Work colleague 1 who had been diagnosed for some time. However, even Referral to welfare rights service among those prepared to apply for benefits themselves, Benefits Agency Worker 1 the main barrier to doing so was lack of knowledge Cancer Information Centre 1 about entitlements, Cancer Specialist Nurse 1 Carer: If we’d been told about it [benefit entitlement] Family/friend 5 we would have [applied ourselves] because, you know, Macmillan Nurse 4 we’re quite into doing things ourselves. Macmillan Support Worker 1 Partner: The surgery [GP] has a mass of leaflets but, Self 8 er, which we look through occasionally when we’re there, Unsure 1 but none of them seem to have anything to do with Location of welfare rights advice grants, benefits. (PO15, male, aged between 75-79) Cancer Information Centre 4 As Table 2 shows, half of the participants had already Home 17 received one or more benefits as a result of other ser- Telephone 1 vices, most commonly the Macmillan Cancer Specialist Approximate time between diagnosis and nurses. Most of these benefits were specific to health, receipt of advice often Disability Living Allowance or Attendance Allow- Same Day 2 ance. Despite already having some benefits in place, 2-4 weeks 1 these participants remained eligible for subsequent ben- 1-6 months 5 efits, emphasising the need for specialist welfare rights 6-12 months 2 services with expertise in the entire benefits system Over 2 years 4 which is both complex and ever-changing. 10+ years 2 Three respondents did not obtain successful out- Unsure 6 comes from the claims made on their behalf. Some individuals did not qualify because of the level of their treatment, but not having sufficiently high health/care incomes and assets; others were on relatively low needs to qualify for health related benefits. Secondly in incomes but did not qualify for a number of reasons. the case where a partner continued to work which pre- Firstly, being unable to work because of cancer cluded them from obtaining means tested benefits. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 7 of 12 http://www.biomedcentral.com/1472-6963/10/259 Thirdly, ineligibility resulting from insufficient Having described the impact of welfare rights services, National Insurance payments (particularly in the case we conclude the results section by examining the factors of those in education or training). However, despite that impeded individuals’ access to welfare rights advice not receiving any monetary assistance, the individuals and the ways in which study participants accessed these concerned found it helpful to have expert advice and services. someone to assist them with the process of checking what they might be entitled to, Barriers to accessing the benefits system I was told initially that there probably wasn’t anything Lack of knowledge of available benefits was the greatest that I could get, which is actually how it’s turned out. I single barrier. Most participants recounted how they did mean that’s not the fault of Macmillan, it’s obviously, in not know that there were benefits available to them and my opinion, the fault of the system if you like. I think it’s therefore would not think to claim, disappointing when you’ve worked your entire life and There’s no means of knowing what you’re entitled to or sort of in the back of your mind, you think well if I’mill what you’re not. (P021, male, aged between 70-74) or if somethinghappens,atleast,you know,weget this Iwouldn’t have applied for them [benefits] off my own benefit of some kind and then it’s not there, that is pretty back because as I say, I didn’t know I was entitled to damning. (P156, male, aged between 60-64) anything. (P036, female, aged between 45-49) A number of participants were already in receipt of (ii) Outcome of obtaining welfare rights advice benefits prior to having a diagnosis of cancer. Despite The income generated as a result of welfare rights this, help from the welfare rights advisers was required advice enabled people to afford necessities and addi- in order to check their current benefit status and tional items that were required as a result of a diagnosis changes in entitlement as a result of cancer. Those of cancer. The money was used in a number of ways already receiving benefits were no more likely to pursue and included: offsetting additional costs associated with a benefit claim independently than those not, nor were cancer (travel and parking costs, heating bills, dietary they more likely to be aware of their entitlement to needs, clothing needs due to weight loss/gain); lessening benefit. the impact of loss of earnings or unemployment; provid- It was common knowledge among most of our partici- ing a safety net while individuals negotiated with com- pants that many millions of pounds of benefits in the panies over their health insurance claims. While UK are unclaimed every year. However, the general pub- financial stress could not be relieved for all participants, licity about benefits did not appear to alert participants for the small number of individuals who did not qualify to their entitlements. The lack of available information for additional income, the fact that they had received that people could understand and then act on was high- expert advice and had all avenues explored gave some lighted as a major concern. Particularly among those for reassurance. All individuals valued knowing about the whom it was some time between diagnosis and receiving service and having somewhere to turn should their cir- benefits advice, there was a view that if professionals did cumstances change, not alert them to benefit entitlement, then people would But without the help I definitely think it would have assume they were not entitled, been a struggle for everybody. I mean we have good I mean we see all these adverts off the TV about peo- families and all that, but that little bit, the extra money ple aren’t claiming their benefits, but if you don’tknow has been a godsend. And as far as I’mconcerned has what the benefits is, it’s not very helpful. (C005, female, taken a lot of pressure off my illness. (P106, male, aged caring for partner with cancer) between 55-59) It shocked me that nobody had ever told me about it ... It takes the pressure off ... you know it takes the worry you think that somebody would have told you about it. away. You can concentrate on getting yourself better or (P081, female, aged between 75-79) making your life as comfortable as you can ... it’sone This last comment relates to a point raised by a num- less thing to worry about ... It gets one of your main con- ber of participants concerning the number of profes- cerns covered if you like. I just know it would have been sionals that they were in contact with who did not alert bad. It would have just been, you know ... I think the them to any information about benefit entitlements. A worry would have killed us off, not the cancer.(P017, commonly held view was that if no-one informed them female, aged between 65-69) of the possibilities of welfare entitlements, then there The range of emotions resulting from cancer diagnosis would be no entitlement. and treatment was, for some individuals, compounded In describing their lack of knowledge about their own by worries about finance both in the immediate and eligibility for benefits, a number of participants, particu- longer term. larly those over retirement age, discussed at some length Moffatt et al. BMC Health Services Research 2010, 10:259 Page 8 of 12 http://www.biomedcentral.com/1472-6963/10/259 attitudinal factors that influenced their propensity to getting away with it ... like I say when I had the [serious claim (had it been left to them alone). Values of hard illness], a genuine illness ... I never claimed anything all work, ‘making do’ and self reliance were narrated by these years because I’d always thought of myself as not several participants. Most recounted how they had having a disability even though I knew I had ... people worked hard all their lives and avoided claiming bene- had been telling us for months, ‘You should claim,’ and fits, despite periods of unemployment. Moreover, many eventually I did go and it was so disheartening when I related unpleasant dealings with the ‘Social Security’ sys- had a genuine illness and I got turned down. (P078, tem in the past. male, aged between 50-54) It’s just this stigma attached, oh you’re claiming this, A number of factors acted as barriers to obtaining but I think now I’ve got to the point where it does help, benefit entitlements. Lack of knowledge and information even with the shopping, so I would advise anyone, yes do about entitlements were the greatest barriers. There claim if you need it, because it does help towards the were also a number of attitudinal factors that appeared financial side ... you just have to swallow your pride ... to relate to lifetime experiences, concerns about stigma it ’s really good they ’ve got things in place like that. and scrounging, compounded by personal awareness (P057, female, aged between 35-39) and campaigns about benefit fraud. However, when Compounding these views, were beliefs about the assisted to claim, no individuals refused to take up their extent and severity of illness. Some participants felt that entitlements. Having outlined barriers, we turn finally, they were not as ill as others they had known or cur- to describe the ways in which participants accessed this rently knew and therefore notgenuinely deservingof welfare rights service. health-related benefits, despite in some cases serious ill- ness and prognoses. These feelings were, for some, Accessing welfare rights advice bound up with the process of accepting and dealing As showninTable 2, participants foundout aboutthe with illness; the receipt of benefits symbolising an inabil- service in a number of ways, mostly from a professional ity to cope with the financial aspects of life that had pre- including Benefits Agency staff, Macmillan nurses, can- viously been managed prior to becoming ill with cancer, cer specialist nurses and district nurses. This indicates Carer: It makesussound thick, butmyhusband the importance of the integration of services for people always said, oh I’m not bad enough. with cancer, alerting them to services that they can call Partner: Well, it’s partly my attitude ... I fight all along on when needed. Referral to the service included both to try to assume that I can cope with [illness] easily ... self-referral and referral by a professional or voluntary when I go along to the surgery or anywhere, hospital, sector staff member. Therewerethereforeanumberof whatever, I look around at all the other people in the routes to accessing this service and some individuals waiting area and I feel a bit of a fraud. (PO15, male, commented on how varied knowledge about welfare aged between 75-79) rights advice services could be depending on where they Accounts of ‘stigma’, ‘sponging’, ‘pride’ and ‘deserving’ happened to be receiving treatment, were cited by a number of people as barriers to seeking When I was at [named] hospital, I just didn’tsee any- benefits. None of the interviewees in this study, how- body. As soon as I was at [different hospital] there ever, refused to apply for benefits when this was sug- seemed to be somebody straight there ... as soon as you gested by the welfare rights advisor. Yet, a number of walked in, what can we do to help? ... [welfare rights participants mentioned cases of people they knew who advice] didn ’tseemtobea standard procedureat were claiming in the absence of a ‘genuine’ illness. Parti- [named] hospital. (P058, male, aged between 50-59) cipants could not understand how people could get Most participants were seen in their own homes, and away with this and blamed the individuals falsely claim- this was particularly suitable for individuals who were ing, those sanctioning claims, but also the system itself. unwell and fatigued from treatment (many of whom Thus, they wished to distance themselves from the sys- were having to travel long distances for this). tem, but also from those non-genuine claimants, who Great. You know in your home environment. Em, it’sa they felt brought the whole system into disrepute. Parti- much better, you know, that she actually saw us here, cipants appeared to distinguish fairly clearly in their you know. You’re more relaxed and, you know, I had all own minds between genuine and non-genuine claims, the paperwork here. (P119, male, aged between 55-59) and invoked a strong sense of unfairness when they All participants agreed that welfare rights services thought that people were abusing they system, should be available for people affected by cancer, and The amount of people I knew who never had any ill- that this should not be something that medical staff ness and they were just pulling the wool over the doctor’s ought to deal with. Participants were uniform in their eyes was serious ... I mean they must tell some shocking views about the characteristics of such services - that lies to the doctors ... I don’t agree with it, but they were they should be proactive, offer practical help with Moffatt et al. BMC Health Services Research 2010, 10:259 Page 9 of 12 http://www.biomedcentral.com/1472-6963/10/259 information about entitlements and active assistance to effects of cancer diagnosis and treatment presented a claim. Participants’ views about the best time to provide further barrier, and few participants felt well enough information about the advice or advice itself varied and (physically and emotionally) to undertake the process of ranged across: point of diagnosis; at the bedside while claiming themselves. The welfare rights advice service recovering from surgery; at the point of discharge; and, was valued by participants in a number of ways: alerting after chemotherapy. These opinions broadly reflected people to their entitlements; processing claims; and individual circumstances as well as medical treatment dealing with the complex bureaucracies that surround and participants’ recollections of how they had felt dur- benefits. The additional monies obtained compensated ing their period of treatment. What came across to varying degrees for extra expenses related to illness strongly was that welfare rights services were regarded and loss of earnings. as an important part of non-medical care for people This study adds to the existing qualitative literature with cancer; comparisons were drawn with other non- about the financial impact of cancer on individuals and medical services that exist to assess people’s readiness to their families and is one of the first that has included a cope with their illnesses on leaving medical care, range of cancer types, people below and above state ...if you’re going home from hospital or somebody was pension age and individuals from urban, semi-rural and in the hospital doing the care thing, coming to the bed rural areas. Caution must always be exercised in draw- and saying, right you’re going home now, just the same ing conclusions from small scale qualitative studies, par- as an old person who’s assessed when they come home to ticularly one with the range of case variability present in see if they can boil a kettle ... (P106, male, aged, between this sample [36]. In terms of the sampling, the study 50-59) does not include individuals from ethnic minority The final row of Table 2 shows participants’ estimates groups or people whose first language is not English, of the time between diagnosis and their receipt of wel- although evidence would suggest that these groups have fare rights advice, highlighting great variation. Those even greater difficulties accessing benefits than who had been eligible, but not received benefits for the white majority population [37]. Moreover, given that years or months reflects a reality for many people with the sample was drawn from people accessing the welfare cancer; without specialist services, there will be substan- rights service, the findings are derived from people tial non uptake of benefit entitlement. Those who more likely to be affected by financial strain and stress received advice within a matter of days or months were after cancer. Methodologically, best practice has been participants who were recently diagnosed and for whom followed in fieldwork, data analysis and interpretation referral to the new service was operating efficiently. [34,36,38,39] and two individuals (EN, SM) were closely Those accessing the service overcame previously men- involved with data analysis and interpretation to jointly tioned barriers to claiming their entitlements. A range verify the findings and constantly relate interpretations of factors involved in facilitating access have been iden- back to the data. Rather than make direct generalisa- tified (Table 2). Health professionals and commissioners tions from the data, we draw out the implications from need to give these careful consideration in order that our analysis and make inferences about how these find- high quality services tailored to the needs of people with ings might be transferred and applied in other settings cancer can be provided. and practices [30]. The findings of this study are likely to be of relevance to people affected by cancer in the Discussion UK, although may be less relevant to localities with less Participants’ accounts capture the stress of cancer and widespread and severe socio-economic deprivation. Ele- the ways in which financial worries may compound ments of more generic relevance beyond the UK may be dealing with diagnosis and treatment. Our findings bear the added burden resulting from the financial conse- out those of a larger study into the psycho-social needs quences of cancer diagnosis and treatment. Relating the of cancer patients which found that financial needs were findings to the limited available literature backs up most likely to be unmet and that for some of those existing research that individuals in the UK struggle experiencing financial hardship, ‘this aspect of living with the benefits system when left to deal with it alone with cancer was almost worse than the disease itself’ [40]. Furthermore, people affected by cancer in the UK [35] (p602). The extent of financial problems varied miss out on benefits to which they are entitled in the depending on individual circumstances, but had signifi- absence of specialist services [3,4] and that there are cant and long-term implications for a number of indivi- considerable additional costs associated with cancer duals and their families. Despite the existence of state treatment [22]. Uniquely, this studyhas alongitudinal benefits designed to assist people with health problems, element, and follow-up interviews are currently under- very few individuals knew about what might be available waywhich will enableamorein-depthexamination of and even fewer knew how to claim. Moreover, the the impact of the cancer trajectory on finances. Moffatt et al. BMC Health Services Research 2010, 10:259 Page 10 of 12 http://www.biomedcentral.com/1472-6963/10/259 Our data demonstrate the impact that loss of earnings rights services for people with cancer to which health mayhaveon the economicwellbeing of people with and social care professionals should be able to refer. cancer and their families, as well as the additional This would enable professionals to concentrate on their expenditure that may accompany cancer treatment. core business, but ensures that patients obtain the There is a growing literature on the financial impact of advice and assistance that they require in financial mat- cancer [5,8,41,42] largely as a response to the increasing ters. Responsibility to refer would rest predominantly numbers of cancer survivors, and awareness of the long with health professionals, but provided adequately term implications of loss of earnings among those of resourced welfare rights services are available, this could working age. Low income families were more likely to become routine practice. experience financial hardship than people in high The data presented indicate that patients’ views dif- income groups and within households, ‘cancer in men fered regarding the optimal timing for referral and may result in greater financial difficulties than cancer advice and there is clearly no ‘one size fits all’ remedy to among women, although the effect will depend on this. However, given the repeated encounters that most breadwinner roles before diagnosis’ [8] (p4350). A recent people with cancer have with health care professionals, review of factors affecting cancer survivors’ employment opportunities abound for ensuring that individuals and work ability found that cancer survivors who were receive information about welfare rights advice services, older, with a lower level of education and in ‘blue collar’ are able to consider it and obtain a consultation. This jobs were less likely to be employed following treatment system avoids overburdening health care staff with non- [42]. The authors of this review, which did not include medical responsibilities and ensures that the advice any UK studies, acknowledge that the likelihood of given is expert and up to date. There is a clear role for returning to work is influenced by ‘the financial support health professional involvement in ensuring that the that a state offers for people with cancer’,aswellas topic of finance is raised with cancer patients as well as family resources and the psychological role of work in initiating onward referral to welfare rights advice ser- assisting recovery [42] (p450). The type of assistance vices (inthe UK,these maybeprovidedbythe local provided by various welfare states differs greatly [9] and authority, Citizen’s Advice Bureau or Macmillan Cancer the findings reported here illustrate the difficulties that Information Centres). Health professionals are not people with cancer in the UK face in accessing their equipped to offer sociolegal help, unless, as in the case state benefit entitlement. To the best of our knowledge, of Macmillan nurses, they have specialist training that is this has not been discussed elsewhere, and may be an regularly updated. Other health professionals do not issue that is specific to the UK welfare state system. have the expertise to give reliable and accurate informa- To date,asmallbodyofworkinthe UK hasshown tion, nor the time to do so. that financial worries can add to the stress of cancer The UK National Institute for Clinical Excellence diagnosis and treatment [3,4,40]. The findings of this (NICE) Guidance on Cancer Services recommends that study demonstrate why it is difficult for those affected ‘patients and carers should be offered assistance to by cancer to pursue benefit claims themselves, but that obtain benefits for which they are potentially eligible by welfare rights services transform patients’ experiences professionals who are informed and knowledgeable and provide access to much needed benefits. In the UK, about the benefits system’ [43] (p88) and recognises that it has been shown that a significant amount of income some needs of cancer patients can only be met by indi- was lost for terminally ill cancer patients [4] and lung vidualsoragenciesoutside theNHS.Thisstudy high- cancer patients [3] as a result of delays before claiming, lights the crucial role that welfare rights advice services despite all patients having several contacts with a range have in providing such assistance. Important areas for of health and social care professionals. Given that the further research include the psychological impact of eligibility rules are more straightforward for people who dealing with the financial stresses of cancer as well as are terminally ill, this suggests a professional failing to the impact of cancer on earnings and future employ- address holistically the full range of end of life issues. ment prospects for those of working age. This is perhaps a manifestation of the boundaries between the NHS and social services, reflecting what are Conclusions traditionally regarded as ‘medical’ versus ‘social’ issues, This study draws attention to the difficulties faced by compounded by the complexities of the benefit system people affected by cancer in the UK who do not receive itself. Although our findings rest on a small sample, this their full state benefit entitlement. The findings empha- study reinforces other work about the important role sise the benefits of a welfare rights advice service that is that welfare rights advice services have in facilitating administratively outside the NHS, but working closely access to state welfare benefits [15]. We believe that this with health and social care professionals who can make study adds to the evidence supporting dedicated welfare appropriate referrals. Such collaboration, founded on an Moffatt et al. BMC Health Services Research 2010, 10:259 Page 11 of 12 http://www.biomedcentral.com/1472-6963/10/259 3. Chapple A, Ziebland S, McPherson A, Summerton N: Lung cancer patients’ appreciation of the full needs of people with cancer, can perceptions of access to financial benefits: A qualitative study. British assist with the practical demands that arise from dealing Journal of General Practice 2004, 54(505):589-594. with the illness. Without such services, many people 4. 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National Audit Office: Tackling Pensioner Poverty: Encouraging take-up of entitlements. London: National Audit Office 2002. Acknowledgements 19. Quinn MJ, Babb P, Brock A, Kirby L, Jones J: Cancer trends in England and We would like to thank all those who took part in the interviews. For their Wales, 1950-1999. Studies on medical and population subjects, No 66. helpful comments on the paper, we thank Stephen Guy, Chris Graham, London: The Stationery Office 2001. Anna Knight, Ann Ryan and Mark Lloyd at Durham County Council and 20. Dano H, Andersen O, Ewertz M, Petersen JH, Lynge E: Socioeconomic Professor Martin White at Newcastle University. We are grateful for the status and breast cancer in Denmark. International Journal of Epidemiology valuable support given by Macmillan Cancer Support and County Durham 2003, 32(2):218-224. Primary Care Trust which made this study possible. 21. Rowan S: Trends in cancer incidence by deprivation. England and Wales 1999-2002. 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London: National Institute for Clincial Excellence 2004. Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/1472-6963/10/259/prepub doi:10.1186/1472-6963-10-259 Cite this article as: Moffatt et al.: “Done more for me in a fortnight than anybody done in all me life.” How welfare rights advice can help people with cancer. BMC Health Services Research 2010 10:259. Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit

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