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More than £90 million in disability benefits is going unclaimed by people diagnosed with terminal cancer in the UK, according to new research by Macmillan Cancer Support.
Over a third (36 per cent) of terminally ill cancer patients are dying without receiving either Disability Living Allowance (DLA) or Attendance Allowance (AA) – key benefits to which they are automatically entitled. The reasons for low take-up include people not knowing they are eligible, the perceived stigma of claiming state benefits and the confusing claiming process.
To help cancer patients and carers find out what benefits they may be able to claim, Macmillan has launched an easy-to-use online programme called Benefits made clear. The interactive guide, which is the first provided by a charity, can be found at www.macmillan.org.uk/benefitsmadeclear|
The report findings are only the tip of the iceberg. Millions more is going unclaimed by people with cancer who do not have a terminal diagnosis. By not claiming DLA or AA, people are also missing out on linked benefits, such as Carers Allowance.
Ian Leech says:
'Our 20 year old daughter, Melissa, was diagnosed with lymphoma in the summer of 2007, but it wasn’t until the end of February 2008 that she got benefit money. It was too late. She died just over two months later. 'As a student she fell through the benefits gap, but even when she applied for DLA we were told a decision could take three months. The forms were horrendously complicated, we sent them off, but then had to keep phoning to find out what was happening to her application.'
'Our 20 year old daughter, Melissa, was diagnosed with lymphoma in the summer of 2007, but it wasn’t until the end of February 2008 that she got benefit money. It was too late. She died just over two months later.
'As a student she fell through the benefits gap, but even when she applied for DLA we were told a decision could take three months. The forms were horrendously complicated, we sent them off, but then had to keep phoning to find out what was happening to her application.'
The research shows huge variation in take-up across the UK. England has the lowest claim rate overall – 39 per cent do not claim. Cancer patients in the north west are twice as likely to claim as patients in the south east.
Ciarán Devane, Chief Executive at Macmillan Cancer Support, says:
'It’s tragic that terminally ill cancer patients are struggling to make ends meet when there’s money available. Benefits make a real difference to people who have to deal with money worries on top of having cancer. Macmillan can help people find their way through the notoriously complicated benefits system so we urge people to go online or speak to one of our benefits advisers.'
Macmillan also provides financial information via a national phone service, local benefits advisers| and a range of publications|.
ENDS
***Case studies available***
Rebecca Openshaw, Macmillan Cancer Support 020 7840 4699 (out of hours 07801 307068) ropenshaw@macmillan.org.uk|
English Government Office Region and % of eligible people not claiming
North East 32%
North West 20%
Yorkshire and The Humber 39%
East Midlands 42%
West Midlands 36%
East of England 43%
London 26%
South East 57%
South West 48%
The difference between the number of deaths and the number of cancer related DLA and AA claims was multiplied by the higher rate of AA entitlement which is the same as the high rate of the care component of DLA (all numbers for 2007). These rates provide total payments over a six month period of £1677. The product of these two figures gave an estimation of the value of unclaimed DLA/AA benefit over a six month period for people living with terminal cancer.
The estimate assumes that all people who died of cancer would have been entitled to DLA or AA for the last six months of their life. It is important to note that this assumption may not hold in all cases for the following reasons. Some people may:
Disability Living Allowance (DLA) helps people meet the extra costs incurred because of their disability. People with cancer are eligible for DLA if they have the requisite care or mobility needs. DLA is not means tested, non contributory and can be claimed by anyone regardless of their household income or employment status. Disability Living Allowance is in two parts - the care component and the mobility component. Claimants may be able to get just one component or both. The care component and mobility component are paid at different rates depending on the extent of their care or mobility needs.
Care component
Weekly rate
Highest rate
£70.35
Middle rate
£47.10
Lowest rate
£18.65
Mobility component
Higher rate
£49.10
Lower rate
Attendance Allowance (AA) is a similar non-means tested benefit for people aged 65 and over, but, unlike DLA, there is no mobility component. There are two rates of AA – higher rate (£70.35) and lower rate (£47.10). The amount paid depends on the extent of their care needs.
Anyone who has been given a terminal diagnosis with a life expectancy of less than six months should automatically qualify for the DLA higher rate care component (whatever their needs are) or, if they are aged over 65, the higher rate AA. Claims made under the Special Rules for terminal illness should be processed much quicker than ordinary claims.
More information can be found on the Direct Gov website|.
The simple online program gives people an idea of their eligibility for Statutory Sick Pay, DLA (both components), AA and Carers Allowance.
Further information on available financial help for people living with cancer can be found at: www.macmillan.org.uk/financialsupport|. Benefits advisers can be contacted on freephone 0808 808 00 00.
Macmillan Cancer Support improves the lives of people affected by cancer, providing practical, medical, emotional and financial support and works to improve cancer care.
In 2008, Macmillan helped people living with cancer receive more than £70 million in grants and benefits for everything from household bills to council tax.