 |
access key options 
skip navigation what's new home site map search
disability benefits consortium home page
about us | benefits | contact us | frequently asked questions | links | make a donation | membership | publications | tax credits | what we do | what you can claim
Access deniedThis article appeared in the Summer 2005 edition of our Bulletin.
Siobhan Miller of Health Solutions, health and social care consultancy, reports on problems faced by cancer patients when claiming disability living allowance and attendance allowance.
Cancer, by its very nature, brings with it high extra costs and care and mobility needs, particularly around the time of diagnosis and treatment. But there is a growing body of evidence that cancer patients, particularly those near the end of their lives, are missing out on disability living allowance (DLA) and attendance allowance (AA) leaving hundreds of millions of pounds unclaimed. 1 2
Previous studies have found that cancer patients’ access to these benefits is hindered by poor information, lack of specialist benefit advice and stigma. 3 4 Joint research by Macmillan Cancer Relief and the Social Security Agency in Northern Ireland also suggests that problems with the claims process itself can make it difficult for cancer patients to make successful claims for DLA and AA. 5 Issues relating to the qualifying tests, and the rules relating to hospital in-patient care and terminal illness, were thought to pose particular challenges, putting cancer patients at risk of financial hardship and adding to the huge emotional strain experienced by many, particularly at the end of their lives.
Macmillan recently commissioned a further study to explore its belief that the disability benefits system needs to be fairer for cancer patients. The study investigated the unique problems faced by cancer patients when claiming DLA and AA, through the eyes of specialist benefits advisers, and identified aspects of the claims process and rules that cause particular difficulties. All 17 of the benefits advisers in Macmillan-funded projects who give specialist information and advice to around 10,000 cancer patients a year in England, Wales and Scotland were interviewed by telephone.
Benefits advisers revealed that both patients and health professionals are poorly informed about what the benefits are for, and who can apply for them. This, coupled with confusion about the claims process itself, has the cumulative effect of deterring patients from applying, and of discouraging doctors from backing patients’ claims.
Cancer patients often find it hard to qualify for DLA and AA, especially if their disease emerges suddenly and unexpectedly. Needs start suddenly as a result of treatment such as radiotherapy or chemotherapy, and newly-diagnosed patients may have scant idea of what their future care and mobility needs will be. This makes it difficult for patients to meet the three-month retrospective, and six-month prospective, qualifying tests for DLA, i.e. when the patient has to show that they have had care needs for the three months prior to claiming and that these are likely to continue for a further six months in the future. Even if they do meet the criteria, the effect of the disease may not be thought severe enough to award a claim.
The six-month prospective test for DLA is also difficult for doctors, who either can’t, or are reluctant, to predict their patients’ prognosis. The reasons for this range from the sheer difficulty in knowing how a patient’s disease will progress, to wanting to keep an optimistic view of the future for the benefit of the patient. This can lead to doctors giving the patient ambiguous information or refusing to give any information at all in support of a claim.
“...they don’t know how chemotherapy or radiotherapy is going to leave someone... I’ve had a lot of customers that radiotherapy has left them with severe burns...left with a tremendous amount of pain for a very, very long time...it’s not just 6 months down the line... it’s longer than that...”
The six-month retrospective test for AA (where patients have to show they have had reasonable care needs for six months prior to claiming) is particularly onerous for elderly patients without pre-existing health problems. When patients can’t meet the qualifying tests for DLA or AA, this can stop them from getting other benefits, such as carer’s allowance and additional premiums or elements within income support, pension credit, housing benefit and council tax benefit. The financial impact on patients, and their families, who depend on benefits, but whose claim is refused, can be devastating.
Benefits advisers pointed to several problems with the claims process itself, starting with the need to fill out a claim form which cancer patients were said to find repetitive and often irrelevant to their experiences.
Delays in the administration of claims were also reported, both within the NHS and the Department for Work and Pensions (DWP). NHS delays were mostly put down to hold-ups caused by:
The DWP delays stem mainly from the loss or mismatch of patients’ claims forms from doctors’ supporting statements. All in all, delays can add to the already overwhelming stress felt by cancer patients, struggling to cope with the effects of their disease and treatment.
Once decisions are made, the grounds for this are not always understood by advisers or patients. This can lead to frustration and anger amongst those denied an award without explanation, by non medically trained DWP staff who know little about the impact of different cancers and their treatment.
The 28-day downrating and linking rules for hospital in-patients’ entitlement to DLA and AA put cancer patients at a distinct disadvantage. The rules state that DLA/AA stops after 28 days in hospital. This is not just for those who are in-patients for several weeks, short spells in hospital are added together to make up the 28 days. 6
The intense cycles of aggressive treatment needed to contain the disease mean that patients spend frequent spells in hospital, when they are often unable to work and have no other source of income. No matter what the pattern and length of hospital stay, cancer patients quickly accumulate the permitted 28-day limit, making them more vulnerable to losing DLA and AA and the other benefits linked to it. This comes at a time when patients and their families have to cover the extra costs of being in hospital (including travel, car parking, special foods, and phone calls) with the continuing costs of running a home.
Losing benefits in hospital and delays in reinstating benefits can push patients and their families into financial crisis. When carers or family members lose their benefits, this can add guilt to the already unbearable emotional strain experienced by cancer patients.
“I’ve had clients who have been threatened with eviction...they’ve lost their income support, which means they’ve subsequently lost their housing benefit, they’re in the hospital, they’ve got no means coming into the house. It must be extremely distressing for people.”
Patients generally aren’t aware of, or don’t understand the in-patient rules, which one benefits adviser described as being so complex that even he had difficulty in understanding them. Even when patients do know about the rules, they are sometimes driven to underplay their situation to the DWP for fear of losing benefit. In rare circumstances, people may even jeopardise their treatment to avoid losing DLA or AA.
On the whole, the impact of cancer treatment and side-effects, and the sheer number of visits, make it difficult for patients to remember how long they have stayed in hospital. This can result in overpayment of benefit, which patients may find difficult to pay back.
The Special Rules that allow the fast tracking of claims by terminally ill patients seem to work fairly well for cancer patients, although some difficulties do arise. Problems are minimised when claims are dealt with by staff in a dedicated special rules unit, but not all regions have these.
Patients and doctors can find the Special Rules process difficult to negotiate. Eligibility for processing under the Special Rules is dependent on the six-month life expectancy definition of terminal illness, which is widely interpreted by doctors.
Again, doctors were said to find it hard and to be generally unwilling to provide a prognosis. Being asked to predict whether a patient would die within six-months gives doctors little room for manoeuvre – a 12-month period was suggested for greater flexibility. Some doctors fear being proved wrong and others simply want to bolster their patients’ hope by protecting them from the truth, as described by an adviser in Bradford:
“I suppose it must be very difficult – I don’t think I could be a doctor and tell someone they are going to die. They try and waffle around things a little bit even when there is little hope and the treatment is palliative.”
Doctors may even refuse to support a patient’s claim with medical information (the DS1500 form) because of this. By the same token, patients either aren’t told about their prognosis, or deny it. Indeed, a certain amount of collusion goes on between doctors, patients, their families, benefits advisors and the law itself to sidestep the issue of life expectancy.
All these factors contribute to denying patients access to the special rules process, and slow down the administration of claims – sadly, patients who would have otherwise benefited from DLA or AA at the end of their lives have been known to die before their claim was processed. For a copy of the report "Access Denied" visit the Macmillan Cancer Relief website.
1 Macmillan Cancer Relief (2004) The Unclaimed Millions. London: Macmillan Cancer Relief.
2 Social Security Committee, Fourth Report: Disability Living Allowance, HC 641 (1998).
3 Chapple A, Ziebland S, McPherson A and Summerton N (2004) Lung Cancer patients’ perceptions of access to financial benefits: a qualitative study. British Journal of General Practice. Vol. 54.
4 National Audit Office (2005) Tackling Cancer: Improving the patient journey. London: The Stationary Office.
5 Macmillan Cancer Relief/Social Security Agency (2004) Benefi ts Access for People Affected by Cancer in Northern Ireland. London: Macmillan Cancer Relief/ Social Security Agency.
6 The Government recently announced that the rules relating to retirement pension, income support and incapacity benefit are to be relaxed, allowing payment of benefit beyond 52 weeks in hospital. This makes the position relating to DLA/AA even more out of line.
