Emma Noble Suzanne Moffatt Institute of Health and Society
31
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
Emma Noble Suzanne Moffatt Institute of Health and Society
Emma Noble Suzanne Moffatt Institute of Health and Society
Slide 2
Paris, J.A.G. & Player, D. (1993) Citizen's advice in
general practice, BMJ, 306 (6891), pp.1518-20.
Slide 3
Evaluation of dedicated welfare rights advice service
Background Facts & figures about service & service users
Interview data of service users Health professionals
perspectives
Slide 4
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
Slide 5
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
Slide 6
June 2008-March 2010. Baseline questionnaire; demographic
characteristics of individuals/carers accessing service. Routine
information: benefit type, outcome, amount, back pay, frequency of
benefit.
Slide 7
Facts & figures CategoryPercentage Age n=1779 Mean 62
Median 63 Range 3-95 0-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89
90-99 0.4% 1.7% 3.7% 11.4% 22.7% 27.8% 23.6% 8.3% 0.4% Gender
n=1891 Male Female 45.6% 54.4% Indices of Multiple deprivation
n=1854 1 (most deprived) 2 3 4 5 (least deprived) 37.9% 31.1% 15.0%
9.8% 6.3%
Slide 8
Facts & figures CategoryPercentage Referral source n=1573
Health professional (primary care) Self Health professional (acute)
Macmillan Information Services Unknown Other Advert Self help
groups Social Services Other WRA services 29.6% 22.4% 19.6% 11.4%
6.2% 5.8% 1.5% 1.3% 1.1%
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.
Slide 11
Methods Sub sample Semi structured interviews Topic Guide
Sample 35 clients, 9 carers 16 second & 12 third longitudinal
interviews 21 professionals
Slide 12
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
Slide 13
Working ageRetired Carers No financial difficulties
Slide 14
Its a devastating thing, you cant work, and its hard to pay
your bills. Its a hard enough worry cancer itself, without having
to worry about money as well. Thats the major thing with cancer,
apart from obviously having the cancer, thats top priority is the
financial side (male aged 39, self employed)
Slide 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 didnt have a penny coming in,...and I
had to borrow off my family left, right and centre, which is
absolutely horrendous (carer, aged 55)
Slide 16
Increased affordability Paying for outside help Increased
savings Offset lost earnings
Slide 17
Im 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 couldnt
have done that a few months back (before receiving advice and
benefits) ( male, aged 75, terminal diagnosis)
Slide 18
Home improvements Assistance parking Motability component
Slide 19
On-going advice & support Carers & family members
Onward referrals
Slide 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 dont really know what youre doing. It took it off me
(Carer, aged 55)
Slide 21
Affordability Savings Outside Help Offset lost earnings
On-going advice & support Onward referrals Security
Independence Stress & anxiety Social participation Usual
activities Increased ability to cope with wider consequences of
cancer Psychological & Social Impact Financial, Material &
Practical Consequences Home Improvements Assistance parking
Motability Well-being Macmillan Welfare Rights Service
Slide 22
I would say its lifted us 90% because there's nothing worse
than confined to one space. You know, when youve 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 weathers coming (male, age
d 82)
Slide 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)
Slide 24
Barriers to accessing benefits Knowledge Illness/Timing Complex
System Lack Information Altitudinal factors
Slide 25
I mean, literally for the first, I dont know how long, I just
couldnt be bothered with anything, you know, just nothing, nothing
would have been done.....because I just couldnt be bothered...for a
long, long time.....it was just like, lets just get the treatment
and get us a life; well worry about things later (male, aged
53)
Slide 26
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.
Slide 27
But now its better because you can actually ask them if they
need advice because youve got somebody that you can refer a
specific person to, you feel more confident in asking them if
theyve got any issues with benefits. Whereas before perhaps we sort
of left it up to them (Cancer nurse specialist)
Slide 28
I think its very scary for them (clients). Youre given a lot of
information about your disease and about whats 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)
Slide 29
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
Slide 30
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
Slide 31
Publications Noble E, Moffatt S, White M. Its 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/can cer
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