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Benefits (Cancer Patients)

Volume 450: debated on Tuesday 10 October 2006

My debate is about ensuring that terminally ill patients receive their benefit entitlement. I pay tribute to Macmillan Cancer Support, which provided me with much research for the debate. I have personal experience of the problem, because my second late husband, John, died two years ago from cancer.

No one can ever be prepared for the moment when either they or a much-loved partner or relative is diagnosed with cancer. For the person who receives the diagnosis, coping with the news either that their life as they know it will fundamentally change through a regime of extensive treatment, or that their life may be cut short—or a mixture of both—is more than enough for anyone. For the family member, it can be equally devastating, as they attempt to balance the need to support emotionally and physically a partner or relative with the need to handle their own fears and shock on that emotional rollercoaster. I speak from experience.

Cancer is indiscriminate. It can affect anyone, of any sex, at any age, in any occupation and at any time. No matter who that person is, a diagnosis of cancer in themselves, their partner, parent or child immediately turns them into one of the most vulnerable members of society. When dealing with the shock and the urgency of treatment, the need to enjoy every minute of what remains of life becomes all encompassing. While they—the patient or family member—deal with what life really means, they are exposed to the realities of everyday life. They and their family live with the knowledge that their, their spouse’s or their relative’s life is coming to an end, but bills still have to be paid, the shopping bought and collected and the daily chores carried out.

The simple truth is that cancer frequently causes additional financial hardship. A Macmillan Cancer Support report suggests that 91 per cent. of cancer patients’ households have experienced a loss of income and/or increased cost. Among the under-55s, 70 per cent. have suffered a loss in household income, and the average loss is 50 per cent. Imagine what it must be like to lose half of one’s income in the space of a few months or, in some cases, a few days.

A 2005 survey by Cancerbackup demonstrated that 39 per cent. of working-age cancer patients had experienced significant financial difficulties because of their illness. Increased hospital visits, time off work, transport costs, higher utility bills, special diets, wigs, repeat prescription charges and—most ludicrous of all—car parking costs at hospitals estimated at as much as £325 per person all add to the financial burden on the patient and their family.

At the time of diagnosis, neither the patient nor their family are likely to give any thought to the financial consequences, but someone should be there to guide them. If they are not given that advice, how can they be expected to cope with essential financial management as well as the battle against cancer? It is hard enough coping with a life-threatening disease without having to deal with the stress of financial hardship. For that reason, access to financial support at the right time is crucial. Hence my calling for this debate.

The National Audit Office reported in February 2005 that 77 per cent. of patients had not been informed at any time of the financial support that might be available to them. Macmillan’s 2004 report, “The Unclaimed Millions”, showed that 54 per cent. of people who die with cancer are not in receipt of disability living allowance or attendance allowance, despite terminally ill patients being automatically entitled to such benefits. It is not surprising that the Public Accounts Committee described the situation as “scandalous”.

The DS1500 form caters for those people with a life expectancy of less than six months in order to fast track claims for disability living allowance and attendance allowance. Incapacity benefit, severe disablement allowance, income support and housing benefit may also be available. If the patient is unaware that they have six months to live, and in some cases it is better if they do not know, their carer, who almost certainly will know, can apply. If no one tells the terminally ill person or their family that they may be entitled to such benefits, however, how can they be expected to claim?

At such times of complete vulnerability and even despair, advice should be automatically triggered; it should not depend on chance. A well-informed and sympathetic GP, consultant, social worker or—dare I say?—MP’s office may be able to guide a cancer patient to the benefits to which they are entitled. Well-meaning tea and sympathy can be helpful, but readily available specialist advice is vital. No cancer patient or terminally ill person should be allowed to fall through the financial net.

In 2005, Macmillan advisers helped in 8,800 cases, enabling cancer patients to identify entitlements and grants worth £16.4 million. However, Macmillan reaches only 3 per cent. of new cancer registrations. Macmillan’s benefits helpline is a UK-wide freephone service for cancer patients. In a few towns and cities, there are specialist advice centres such as the Daisy Bank cancer support centre, which my hon. Friend the Member for Bradford, North (Mr. Rooney) and I visited last Friday. The centre is largely dependent on donations to help the 3,500 people whom it supports. The services are essential, and it carries out outstanding work that requires our continuous, long-term financial support.

In my constituency, there is the treasured Sue Ryder home, Manorlands, in Oxenhope. Dedicated staff provide specialist palliative care to support patients and their families. I welcome the Department of Health’s recent announcement of additional funding, which will go some way to assisting with the capital costs of Manorlands. However, I am concerned that the long-term funding equation does not adequately reflect the number of people who call on its services. If we do not get the equation right, we will threaten the delivery of that crucial service.

As effective and supportive as the palliative care teams are in Sue Ryder homes, the Hospice at Home organisation, and the Marie Curie centre in Bradford where my late husband John was cared for, some families and patients still carry the financial burden alone until the care team picks them up. That is worrying and upsetting. Indeed, the 2005 Macmillan report said that 84 per cent. of GPs surveyed were prompted to suggest and support a financial claim only when their patients were particularly ill during the last weeks of their lives. Surely we should ensure that every patient diagnosed with cancer is routinely advised of the services in their area and their benefits entitlement.

The only way in which we can be sure that essential advice is provided uniformly and as a matter of course throughout the country is to commission a Department of Health/Department for Work and Pensions review recommending ways in which patients can avoid falling through the benefits net. It should focus on how to improve awareness and take-up, and include the key issues of benefits information, the claims process and best practice for health care professionals to ensure that support and advice is available to patients and families as soon as they need it.

I congratulate my hon. Friend the Member for Keighley (Mrs. Cryer) on securing the debate, and I thank her for agreeing to allow me to interject briefly.

The special rules category, which deals with people who are within six months of death, almost always from cancer, has been a bone of contention for a long time. It is a wonderful concept, but it is difficult in practice. The person who signs the DS1500 form should be the person who puts it on the system, so that the transmission to a clearing house is direct, the process kicks in and the patient does not require external agencies. It is worrying—I suspect that it is an oversight—that according to the Welfare Reform Bill those people who fall under the special rules for the disability living allowance will still have to go through the personal capability assessment. They will not be entitled to receive benefit until after the 13-week period specified. I hope that that is an oversight and will be addressed in Committee.

I thank my hon. Friend. He is, of course, the Chairman of the Select Committee on Work and Pensions and he knows far more about the matter than I do.

The most effective way to improve the provision of information would be for the Department for Work and Pensions to work more closely with the Department of Health. Improving the awareness and take-up of benefits among cancer patients is a classic example of a policy that requires joined-up working across Departments if it is to be effective. If health and social care services do not routinely inform patients of their benefits entitlements and signpost them to DWP services with the capacity to meet their needs, I fear that very little will improve. Ministerial leadership in both Departments is vital to overcome the view that a person’s financial health has little to do with their overall health.

We must recognise that the NHS is the first, and often only, support service to which people in crisis turn. Cancer patients need to know their rights. I was disturbed to read the recent report of the Disability Rights Commission. Despite the amendments to the Disability Discrimination Act 1995 to protect the rights of workers with cancer or long-term health conditions, brought into force in December last year under the Disability Discrimination Act 2005, the DRC helpline receives an average of two calls a week from women who have been diagnosed with breast cancer complaining of unfair treatment at work. Some 82 per cent. of callers with other cancers said that employers were failing to make reasonable adjustments that would help to keep them in work. It is crucial that people who have cancer and will come out of it, whether in one year, three or 20, have the capacity to go back to work. There is nothing like that to encourage them to get better and give them an objective to aim for.

I am proud that this Government have made cancer a priority. There are thousands of people alive today who would simply have had no chance of survival only a few years ago. However, the fight against cancer goes beyond the hospital ward; it is fought also in the home. To have any chance of beating cancer, patients and their families must be equipped with every tool available to help them cope in frequently traumatic situations. Cancer must be treated holistically, with the care of professional doctors and nurses, new treatments, alternative therapies, home care, palliative care teams, families and friends. All are important, but so too is peace of mind. How can any patient have the best chance to fight, or live with, one of the most devastating illnesses that we can suffer if they are concerned about making financial ends meet?

Cancer patients and their families are some of the most vulnerable people in our society. The least that we can do is ensure that they receive the support, including financial support, to which they are entitled.

I first congratulate my hon. Friend the Member for Keighley (Mrs. Cryer) on securing this debate and raising an important and sensitive issue. I also thank her for bringing a personal perspective to the debate. I know that that can sometimes be difficult for a politician, but in so doing she has given the matters that she has raised extra resonance and importance. She has used her own experience to highlight areas that we as a Government and politicians collectively must examine.

Some of the issues that my hon. Friend raised were related to the NHS. If she will forgive me, I shall not deal specifically with those matters, but I assure her that I shall draw her remarks on the service given to cancer patients by NHS organisations to the attention of the appropriate Minister in the Department of Health. I thank her for raising the matter highlighted last week by the Disability Rights Commission, which allows me to draw attention, as I did on Friday, to the fact that we have extended the coverage of the Disability Discrimination Act 1995 to cancer patients from the point of diagnosis. I share her horror at the fact that, as highlighted in the DRC report, some women were given the sack because of their cancer treatment. I believe that agreement has been reached with the employers involved on when the coverage of the Act was drawn to their attention, but those cases should not have happened.

I shall focus on benefit advice and perhaps give my hon. Friend confidence that we are moving forward to ensure that good advice is given to help people, including those with cancer, to make informed decisions on claiming benefit. With that wider remit in mind, I wish to highlight the progress that has been made and show that we are continuing to undertake work to build on it.

The DWP publicises its benefit advice through various outlets. Our starting point is that it is available from the Department’s offices, through citizens advice bureaux and from an increasing number of advice agencies such as local authorities, social services and carers’ organisations. My hon. Friend mentioned two such organisations in her constituency, Sue Ryder Care and the Daisy Bank centre. Such organisations work in partnership with the Department. In addition, information on disability benefits is provided by the benefit inquiry line and the Directgov website, and people with internet access can use it to make claims for disability living allowance and attendance allowance. I appreciate that not everyone has such access, and given the situation of stress that many families find themselves in after a diagnosis of cancer, that might not be an option for some. However, it might be helpful to patients and their families.

My hon. Friend the Member for Bradford, North (Mr. Rooney) commented that it is now possible for a family to process a claim rather than leaving it to a professional, which could mean that it gets lost in the process.

Yes, and I shall come to that point.

Having said that we are making really good progress and working in partnership with many organisations, I add that I am not at all complacent about the situation and I recognise that we need to improve benefit awareness. We are currently working with the Department of Health to develop better ways to signpost disability and other benefits at the earliest opportunity. That relates to a point made by my hon. Friend the Member for Keighley: it is a matter of how to get information to the individual, including getting advice to people as soon as possible after diagnosis. The process will be woven into the information prescription proposals for England that we are developing with the Department. The information prescription will signpost people to sources of information on their condition and to treatment and services at points along their care pathway, including at the point of diagnosis. It will also direct them to telephone advice lines to find out more about the available benefits. As well as their diagnoses, people will therefore be given a coherent indication of the services available to them, including benefit services.

The Department plans to start pilots of the information prescriptions in the near future, and we look forward to their being available across England by 2008. Scotland and Wales are looking at other ways of encouraging the giving of information to the patient, particularly on their health situation. That is a major step forward in delivering benefit awareness nearer to the point of diagnosis and will certainly help people with cancer. The information prescription approach has been promoted by many of the organisations campaigning on cancer.

My Department is now much more involved in outreach work with a range of partners at local level. As my hon. Friend said, those groups are often better placed to advise people about disability benefits in a far more targeted and personal way than would be possible through any mass disability awareness campaigns. Jobcentre Plus also provides information about the full range of available benefits when it deals with claims, including disability benefits.

The Department for Work and Pensions, including the disability and carers service within the Department, and the Department of Health have had several productive meetings with Macmillan Cancer Support about benefit advice. Indeed, I met Peter Cardy from Macmillan Cancer Support only a couple of weeks ago. The meetings between Macmillan and my officials were initiated by Macmillan’s valuable “Better Deal” campaign, which my hon. Friend mentioned and which, among other things, campaigned to raise awareness of benefits for cancer patients.

Our collective aim—that of Departments, Macmillan and the other cancer charities—is to consider how we can identify people who need benefit advice at the earliest opportunity. However, as I am sure my hon. Friend recognises, the Government must also ensure that people with other illnesses and disabilities receive the advice that they need, irrespective of their diagnosis.

Disability living allowance provides a contribution towards some of the extra costs faced by severely disabled people. The allowance is not, and never has been, paid as compensation for particular disabilities, diseases or medical conditions. Entitlement is based on the effect that a severe disability or illness has on a person’s need for personal care. Although automatic entitlement to any of the components of DLA for certain disabling conditions might initially appear attractive, it would not be a precise enough way to determine someone’s actual needs, how they might vary over time, the variable responses of an individual to their condition, or the severity of the condition in each individual’s case—I have discussed the issue with Macmillan. Knowing the particular condition does not help in deciding either what rate of benefit is appropriate or over what period it should be paid.

To that end, the disability and carers service has taken the lead, in working with the patient advice and liaison service, which is located in many hospitals, as I am sure my hon. Friend knows. The disability and carers service offers training sessions on disability living allowance and attendance allowance, and the patient advice line is now linked to the disability and carers service and DWP websites, to try to ensure that information reaches people as quickly as possible. I hope that my hon. Friend will agree that that will give patients better access to benefit information.

It is important that we raise awareness of special rules in those instances where the diagnosis gives the patient only a short time to live—six months in the case of special rules. As my hon. Friend highlighted, the issue is sensitive, but I hope that we now respond to it quickly and appropriately. People with a terminal illness who have a life expectancy of less than six months can claim under the special rules protocol. More than 80,000 special rules claims are dealt with every year, most of which—nearly 90 per cent.—involve people with cancer.

Although the National Audit Office report said that 77 per cent. of people had not received benefit information, as my hon. Friend mentioned, it also said that almost 53 per cent. of people did not want benefit information at the time of their diagnosis. I am sure that my hon. Friend shares with me the understanding that there are so many other things in a person’s life at the time of diagnosis that the important point is where we locate the information on benefit advice and how we get it to the individual and their family.

Doctors and medical professionals can often help in identifying people who may qualify, and supply the disability and carers service with information about the person’s diagnosis or treatment. As my hon. Friend said, we do not even ask that the individual make the application themselves, recognising that in some instances it might not be the right thing for a person to know that they have only a short time to live.

The current qualifying criteria do not discriminate against any disabled group. Entitlement to DLA and AA is based on the level of care or mobility needs of each individual, regardless of the diagnosis. It is right and fair that people with non-terminal cancer—under the current rules, those who are expected to live for more than six months—have to meet the same entitlement conditions with regard to DLA and AA as people with any other diagnosis. People who claim under the special rules do not have to provide information on their care needs when they fill in their claim forms. Indeed, it is worth repeating that they do not need to apply themselves and need not be aware that their award is linked to an early expectation of death. A friend or relative can make the claim.

Special rules claims are dealt with urgently and speedily. Above all, when someone meets the entitlement conditions for the special rules, their claim is automatically awarded at the higher rate. Additionally, doctors who are employed to give medical advice to the Department about those serious cases have to turn them around in 24 hours. The claims are currently cleared in five to six days. About 90,000 claims a year are made under the special rules arrangements for DLA and AA. As I indicated, about 89,000 people are being paid under those rules.

It should also be noted that even if a person does not qualify under the special rules, people with cancer can still claim DLA and AA under the normal rules if their condition means that they have extra personal care and/or mobility needs. Not all cancers have the same prognosis, so it is right that the facts of each case should be taken into account when deciding whether special rules apply.

DLA and AA entitlement can be reliably established only after a claim and an assessment of individual needs have been made. For that reason, our view, which I recognise that not everybody shares, is that it is not currently possible to make a reliable calculation of the number of people who are not receiving DLA or AA, but who might be entitled to do so if they were to make a claim. We certainly do not want to encourage inappropriate claims, but we also want to ensure that people have the information that they need to decide for themselves whether to make the claim. Our information and research do not support the view that the process of making a claim stops people from receiving DLA.

In the five years to February 2006, the number of people receiving DLA increased by nearly 24 per cent., and by nearly 2 per cent. in the past 12 months alone, while AA increased by 13 per cent., and by 2 per cent in the past 12 months. We are trying to simplify the claim process where we can. We are developing and trialling new DLA claim forms that we think will be more responsive to the individual.

Like my hon. Friend, I have had experience of a relative with cancer—my mother, who died of breast cancer. I know the pressures on families and, although I am pretty well clued up, I was not aware in 1995 of some of the benefits that we could have received. As Minister with responsibility for disabled people, I share with my hon. Friend the aim of ensuring that we give information to people with cancer and other conditions and disabilities as soon and as appropriately as possible. I thank her for raising such an important issue again today.