Cancer in Young Adults: Through Parents’ Eyes

6. The financial implications for the family

There is no doubt that illness is expensive, (Baldwin 1985, Bone and Meltzer 1989, Bennett and Abrahams 1994, Beresford 1995, Dobson and Middleton 1998, Corden, Sainsbury and Sloper 2001). It is endorsed by George’s story and borne out by the narratives. The expenses are many and varied, and may leave the family in debt, or with depleted savings, long after the illness is over. The situation is exacerbated in this age group by a number of factors. First, young adults have a degree of autonomy, but little money of their own with which to finance the life style they may try to maintain. Second, if they are students they may have to choose between giving up their studies and claiming benefit and parents such as George’s may struggle to support them financially and relinquish benefit for the sake of morale and the belief that they will return to their studies. Third, treats, trips and holidays may all be an important need for the whole family, but perhaps at this life-stage expectations of what a treat might consist of are more expensive. Fourth, many young people may be attracted by alternative therapies and decide to pursue these in addition to their orthodox treatments, such therapies are, however, extremely expensive and it is unlikely that young adults will have the independent means through which to finance them.

Despite this list of costs, it is clear that financial issues are of secondary importance. They may cause problems, and may have lasting effects, but they pale into insignificance when compared to the possible loss of a child. Indeed financial concerns may be almost impossible to articulate at the time for fear that somehow a ‘price’ is being put on the illness. Therefore they are put to one side to worry about later. Yet if the ‘later’ is after the death of a son or daughter, the additional financial concerns must make the bereavement even more stressful with the addition of practical problems.

Some of the accounts of financial difficulties presented in this chapter relate to problems in both understanding and accessing statutory entitlements. However, as some of the accounts may relate to a period when benefits were awarded under a different system, not all the experiences may be relevant to current regulations which are discussed at the end of this chapter. Nevertheless, many of the issues are still relevant and difficulties in gathering useful and accurate information and succeeding in claiming benefit entitlements remain the same whatever the detail of the claim.

There appear to be particular problems relating to students whose benefit entitlements are complex and often unclear to parents and professionals alike. As a social worker, George’s mother was in a better position than most to know what his entitlements were, but she still struggled with the apparent need for George to withdraw from university before he was entitled to claim benefit. Coxon (2001:10) supports this assumption in a feature in The Guardian Higher Education Supplement. She says that in order to claim benefit for the first six months of an illness, a student would have to withdraw from university. As the sub heading says “You desperately want to finish your course, but you fall ill. Then to cap it all, you discover that for 28 long weeks you will get no financial help from the state at all”. Students who are diagnosed with cancer may well wish to retain their student status in the belief that they will return to their studies after the illness is over. Many never recover sufficiently to return to university, and some die before they complete their degrees as George did. Yet they have to believe that return to student life is a possibility and given the importance of identity as we saw in Chapter 1, to retain that identity as a student when all others are being stripped away by illness is of fundamental importance. Additionally the significance of those around them, both in the family and the medical profession, making a statement in the belief of their recovery, is of vital importance, and the fact that George’s parents continued to pay for accommodation he never used, kept his spirits up and helped him to believe he could recover. He also retained his student status – an important part of his identity.

The Cancer Plan (2000) as discussed in the first chapter has as part of its agenda the commitment to sustain the care of patients with cancer in the community. Yet it is difficult to see how this can be managed without adequate benefits which are accessible, easy to claim and readily known at a time when tussles with bureaucracy must appear intolerable. However, to retain student status under most circumstances will mean no entitlement to benefit.

There are exceptions to this regulation which are based on a student being awarded status as a ‘disabled student’, and thus being able to claim Income Support. This can be achieved through two means – either by the student being declared unfit for work for 28 weeks; or claiming Disability Living Allowance either as a result of having a certain degree of care or supervision needs, or mobility difficulties, for 3 months or being issued with a DS1500 through the recommendation of a medical practitioner. However, the issue of a DS1500 is based upon a declaration that the young person is not likely to live for more than 6 months. The need to retain student status may be important, but the need to believe in recovery is even more important, therefore the DS1500 route, even if applicable, may be unacceptable to many parents and students alike – it is after all an admission of the loss of any hope. Even if a student can claim Disability Living Allowance under the normal 3 month qualifying period rule, it may take several months to process. Only when classified as a ‘disabled’ student can an Income Support claim be made and even then, as it is a means tested benefit, a student, without income or savings may still not qualify. This is because the Student Loan facility is counted as ‘income’, and this is the case even if a student has chosen not to take out a Student Loan. While medical practitioners can facilitate the process of a claim for benefits, they cannot circumvent the procedural routes and are thus limited in their ability to assist a student to qualify for financial help via the benefits system.

The situation relating to students as described here is only accurate at the time of publication, and successive governments may implement policy changes. However, the main principles remain the same even though the details may change across time. That is, that the system is complex and difficult to mange for both students and non-students and that accurate and helpful information is hard to find. The implications for professionals are obvious; they need to have a clear understanding of benefits and entitlements and must be in a position to assist parents in claiming them. We have seen the struggles with form filling and bureaucracy endured by parents, if this burden is alleviated at least one anxiety will be lifted. This would appear to be a of particular importance in relation to single parents who may struggle financially under the best of circumstances and if they are forced to give up work the expense of the illness may become

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