Emma Noble Suzanne Moffatt Institute of Health and Society

1. If you’re head’s all worried and jumbled with finances the rest of your body goes down doesn't it?How dedicated welfare rights advice can help people to cope with the wider consequences of cancer Emma Noble Suzanne Moffatt Institute of Health and Society

2. Welfare rights advice & health Paris, J.A.G. & Player, D. (1993) ‘Citizen's advice in general practice’, BMJ, 306 (6891), pp.1518-20.

3. Overview Evaluation of dedicated welfare rights advice service Background Facts & figures about service & service users Interview data of service users Health professionals perspectives

4. Why service needed 1/3 live in the most deprived areas of England, 10% live in the least deprived areas Life expectancy/early deaths from cancer worse than the average for England Acheson Report 1998 – potential reduce inequalities in health Poor access to welfare benefits: Macmillan Cancer Support

5. The WRA service Macmillan Cancer Support and Durham County Council 2.5 year development phase Advice benefit entitlement, checks, application forms, representation at tribunals Dedicated administrative back up Various referral routes/range of settings

6. Facts & figures June 2008-March 2010. Baseline questionnaire; demographic characteristics of individuals/carers accessing service. Routine information: benefit type, outcome, amount, back pay, frequency of benefit.

7. Facts & figures

8. Facts & figures

9. Facts & figures

10. Outcomes of the service 34 different benefits/grants awarded. Most common were DLA, AA, Macmillan Grants Over 96% of benefits applied for were awarded, raising over £5,000,000. Over two thirds of recipients were from areas of high socio-economic deprivation.

11. Interviews Methods Sub sample Semi structured interviews Topic Guide Sample 35 clients, 9 carers 16 second & 12 third longitudinal interviews 21 professionals

12. Financial difficulties Additional expenditure due to cancer diagnosis: Heating costs Hospital travel & parking Changes to diet New clothing Resulted in: Reduction in leisure and social activities Economise on household bills Borrowing money family/loans Reduced household savings

13. Individual circumstances Working age Retired No financial difficulties Carers

14. “It’s a devastating thing, you can’t work, and it’s hard to pay your bills. It’s a hard enough worry cancer itself, without having to worry about money as well. That’s the major thing with cancer, apart from obviously having the cancer, that’s top priority is the financial side” (male aged 39, self employed)

15. “It was like when my husband first died, I had no money coming in whatsoever, not a penny. Because they stopped the DLA, they stopped the Income Support, they even suspended the housing tax and council tax benefits... and I didn’t have a penny coming in, ...and I had to borrow off my family left, right and centre, which is absolutely horrendous” (carer, aged 55)

16. Financial Impact Increased affordability Paying for outside help Increased savings Offset lost earnings

17. “I’m putting money away every week now. If anything happens...and this is through you people (WRA), I can put the money away so I can have a decent funeral and she can have a decent funeral...I couldn’t have done that a few months back” (before receiving advice and benefits) (male, aged 75, terminal diagnosis)

18. Material Impact Home improvements Assistance parking Motability component

19. Practical Impact On-going advice & support Carers & family members Onward referrals

20. “ It would have been a bit of a nightmare actually, the welfare rights adviser just filled it in, which was very good, because at the time you don’t really know what you’re doing. It took it off me” (Carer, aged 55)

21. Macmillan Welfare Rights Service Financial, Material & Practical Consequences • Home Improvements • Assistance parking • Motability • ↑Affordability • ↑Savings • ↑Outside Help • Offset lost earnings • On-going advice & support • Onward referrals Psychological & Social Impact • ↑Security • ↑Independence • ↓Stress & anxiety • ↑Social participation • ↑ Usual • activities • ↑ Well-being Increased ability to cope with wider consequences of cancer

22. “I would say it’s lifted us 90% because there's nothing worse than confined to one space. You know, when you’ve been used to going out and you cannot get out, where this will give us independence once I get that chair. Put it round the back, I can get into it and away down into the village and the fine weather’s coming” (male, aged 82)

23. “I felt this whole ton weight had been lifted from my body. You know and then when she started I thought thank god for that, ‘I'm going to get help from somebody’. You know? …I think it was a life saver, definitely a life saver” (female aged 65)

24. Barriers to accessing benefits Illness/Timing Knowledge Complex System Lack Information Altitudinal factors

25. “I mean, literally for the first, I don’t know how long, I just couldn’t be bothered with anything, you know, just nothing, nothing would have been done.....because I just couldn’t be bothered...for a long, long time.....it was just like, let’s just get the treatment and get us a life; we’ll worry about things later” (male, aged 53)

26. Professional views Limited knowledge benefit entitlement ‘Ad hoc’ referral system for further advice Reliable & easy referral route Trust developed More likely to refer Enabled professionals carry out clinical work Partnership working: referrals between health care, social care, welfare rights services.

27. “But now it’s better because you can actually ask them if they need advice because you’ve got somebody that you can refer a specific person to, you feel more confident in asking them if they’ve got any issues with benefits. Whereas before perhaps we sort of left it up to them” (Cancer nurse specialist)

28. “I think it’s very scary for them (clients). You’re given a lot of information about your disease and about what’s going to happen. The minefield of benefits is really quite a daunting experience and to have somebody that takes that as a burden...must be a great asset” (Nurse Manager)

29. Benefits of Service Partnership working between health services, WRA services, social care and LA. Dedicated administrative back-up Expert knowledge WRA Sensitive to client needs Service/benefits offered to clients Assistance appeals/tribunals Follow-up contact

30. Conclusions Illness & knowledge: barriers to claiming Targeted at those in greatest need Positive social and psychological effects: ↑ wellbeing Reduced benefit related workload for health professionals WRA services should be available on secure long term basis for people with cancer

31. Publications Noble E, Moffatt S, White M. “It’s a hard enough worry cancer itself, without having to worry about money as well”: The impact of a dedicated welfare rights advice service for people affected by cancer. Available at: http://www.fuse.ac.uk/group.php?gid=157&page=Projects/cancer Moffatt S, Noble E, Exley C. "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. Available at: http://www.biomedcentral.com/1472-6963/10/259