Benefits (Terminally Ill Patients)

Tom Greatrex Excerpts

Thursday 9th February 2012 Commons Chamber

[Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)]

As MP for Hackney South and Shoreditch, I am privileged to represent a number of organisations that are national leaders in their field, one of which is St Joseph’s hospice, which, founded by the Sisters of Charity, has for 109 years provided support for east enders who are dying.

St Joseph’s works with patients to help support them in their final months of life. It offers end-of-life care in its hospice and day hospice, and at home, for terminally ill people, their families and carers. It has a great deal of experience in ensuring that patients get the benefits to which they are entitled.

St Joseph’s has recently alerted me to serious problems with the administration of benefits for people who have been diagnosed with a terminal illness. Hackney citizens advice is also helping a number of people who are diagnosed as terminally ill who are not receiving consistent support and advice when applying for benefits, particularly employment support allowance.

I want to outline the scale of the issue; what is supposed to happen when someone who is terminally ill claims benefits; and the experience of national and local providers and individuals. If I may, I also want to suggest to the Minister some ways in which the situation can be improved.

Nationally, Macmillan Cancer Support and Citizens Advice work together to support cancer patients with benefits and debt advice. From March 2007 to March 2011, they helped more than 39,000 cancer patients with over 190,000 issues. Out of those 190,000 issues, 78% were related to welfare benefits in general, with employment support allowance cases totalling 10,659, or around 8% of cases.

Over the same period, Citizens Advice and Macmillan caseworkers gained more than £77 million for their clients. More than £71 million of that was through ensuring that clients received all the benefits to which they were entitled. Behind those big numbers are vital payments to families of people who are dying and unable to support themselves financially without the support of the state.

Let me explain to Members of the House who may not be aware how the system of claiming is supposed to work. To be “terminally ill” in order to qualify for benefits, a person must have a progressive disease and their death must be reasonably expected within six months. That is certified by a general practitioner or specialist using a medical report called a DS1500. Once someone is given a DS1500 form, they automatically qualify for disability living allowance at the higher rate.

Employment support allowance is the benefit for people under 65 who are unable to work because of their illness. Under special rules, people who are terminally ill and not already receiving one of those benefits are entitled to swift access at the very highest level of support from one of those options. Some who are still working will qualify for both, but not necessarily at the same time.

Macmillan Cancer Support tells me that in its experience nationally, the system for disability living allowance has worked well. The disability and carers service is able to fast-track payments and usually does so. The service is well attuned to the needs of someone with a terminal illness. However, when it comes to employment support allowance the picture is different. To claim for ESA, the person must advise the jobcentre personally that they are terminally ill. In some cases, patients are not aware of their prognosis; in others, they are too ill to advise their jobcentre. Why, therefore, can local jobcentres not just accept the DS1500 form from a doctor, welfare adviser or relative as proof of the right to ESA, as can be done with DLA? Why can a check not be done on the DLA database by the assessor from the Department?

[Tom Greatrex (Rutherglen and Hamilton West) (Lab/Co-op)]

My hon. Friend is setting out the situation powerfully and clearly. My constituent Mr McGowan, of Blantyre in Lanarkshire, is in the latter stages of his life. He has a terminal illness, severe dementia, multiple sclerosis and Parkinson’s disease, he is bedridden and he cannot even swallow. He recently received a standard letter from the Department for Work and Pensions asking him to get in touch so that he could be given guidance about how to get back to work. Given that the DWP knows all the people who are terminally ill, because they have filled in the DS1500 form, is it not irresponsible and distasteful, as well as deeply upsetting for those concerned and the relatives looking after them, for the DWP to send such standard letters, when the data already exist, and people know they should not be in that position?

[Meg Hillier]

I completely agree, and it would be simple to solve the problem. Simply sharing the data would mean that individuals and their families do not have to go through the distress that such letters can cause.

There are times, of course, when a patient who is diagnosed continues to receive income from their employer. That can mean that they do not need to claim ESA until months later, when their paid work stops. They can have their DS1500, but by the time they stop their paid work, it will be out of date. As we know, people have been asked to get an up-to-date form from their doctor.

Macmillan tells me that there have, unfortunately, been cases where jobcentre staff, on seeing the form or requesting it, have disclosed to a terminally ill patient their prognosis. Imagine someone’s shock at learning they are going to die from a member of staff at the jobcentre or from a stranger over the phone. That underlines why the support needs to be particularly sensitive for people who are dying.

Recently, there has been a serious backlog of claims. St Joseph’s has had patients who have died while waiting for their benefits claims to be assessed. I support calls by St Joseph’s and others for the Department to introduce a fast-track approach for end-of-life patients, as with DLA.

Macmillan operates a national helpline and tells me that the situation varies across the country. Some jobcentres say the patient has to make a claim themselves, and some say that is not necessary to start a claim. That variation suggests that, with some focus, the problem could be sorted. I put it to the Minister that we need a step change in how the service is delivered for those who are terminally ill.

The Minister will have been briefed about the guidance that he and his ministerial colleagues have issued to workers on the front line. Whatever the edicts of Whitehall, my concern is that his guidance is not fully understood or is not being followed at a local level. The human impact is immense, and I hope he shares my serious concerns.

--- Later in debate ---

[The Minister of State, Department for Work and Pensions (Steve Webb)]

I congratulate the hon. Member for Hackney South and Shoreditch (Meg Hillier) on securing this debate about such an important and sensitive matter. I join her in praising the work of the hospice movement—including St Joseph’s hospice in her constituency—for the care and support it gives terminally ill people and their families, and, as she said, for helping people to access the benefits that, perhaps in many cases, they should have been receiving earlier. I welcome that work, as well as the work of Macmillan Cancer Support, with which the Department works closely on a range of issues.

The hon. Lady has raised some important matters, to which I hope to respond. I can offer her the assurance that the coalition Government seek to put in place structures in the benefits system that treat people with terminal illness with dignity and give them efficient and effective support—as, indeed, did the predecessor Administration. Individual cases have been raised, both by the hon. Lady and by her hon. Friends the Members for Rutherglen and Hamilton West (Tom Greatrex) and for Bishop Auckland (Helen Goodman). I cannot respond to those individual cases immediately, but I can certainly give an undertaking that if any hon. Member here today wants to follow up on those cases with details—national insurance numbers, and so on—we will be keen to do that, because it is by following through what sometimes appears to have gone wrong that we learn lessons that will be of general benefit.

We want to make it clear that if an individual has a terminal illness, they must be entitled to the highest rate of support, and should receive that support quickly and in the most sensitive way possible. As the hon. Member for Hackney South and Shoreditch mentioned, the two key benefits that are relevant to terminally ill people and their families are employment and support allowance, and disability living allowance—or instead, for those of pension age, attendance allowance. In both cases, our aim is to ensure that terminally ill individuals are fast-tracked through the process for DLA and ESA, so that they can receive the highest level of support as quickly as possible, with a minimal burden on them and their family.

Although there are some differences between the two benefits—for reasons that I will explain—there are also common threads, which links in slightly with the hon. Lady’s point about having common treatment for people with terminal illness. One of those threads, quite properly, is that the definition of terminal illness that the Department uses is the same for ESA, DLA and attendance allowance. The definition is, as she said, that an individual is suffering from a progressive disease and that death in consequence of that disease can reasonably be expected within six months. Although that is a standard definition, I stress that there is also a good deal of flexibility built in. Therefore, although the definition is an indicative rule for accessing what are called the special rules, nobody in a jobcentre or a benefits processing centre will say, “Well, if it’s six months and a day, forget about it.” The definition is intended to be applied as flexibly and sensitively as possible.

Let me give an indication of the extent to which people qualify under the special rules scheme—that is, let me place before the House some indications, as it were, of where the system is delivering as it should. As the hon. Lady said, 4,200 people are placed directly in the support group—which is for non-time-limited support—for employment and support allowance owing to terminal illness each year. Around 22,000 people are awarded DLA owing to a terminal illness, while 38,000 people are awarded AA, which is obviously for older claimants, owing to a terminal illness each year. Therefore, although there will be some overlap between the two groups, roughly 65,000 people are, quite properly, accessing the special rules, which get their claims fast-tracked, so that they can be put straight on to the highest rates.

I want to say a bit more about the process that should be followed. The hon. Lady asked why there was no fast-tracking for employment and support allowance. I can assure her that there is. Individuals are fast-tracked into the support group, and they receive financial support, which is currently £113.90 for a single adult over 25. No obligations are placed on them to look for work or to undertake work-related activity.

[Tom Greatrex]

Will the Minister give way?

[Steve Webb]

I will not, if the hon. Gentleman does not mind. This is the hon. Lady’s debate, and I have only a few minutes in which to respond.

Unlike other claimants to employment and support allowance, individuals who are terminally ill are paid the support group component backdated to the date of claim. So, the assessment period, during which those making a standard claim would be paid at a lower rate, does not apply. Once we have identified that someone is terminally ill and put them in the support group, their payment at the higher rate is backdated to week one; they are not paid the lower 13-week assessment rate. That is quite properly an additional source of support. Similarly for disability living allowance, individuals are fast-tracked to the highest rate of the care component, which is currently worth £73.60. They do not have to satisfy the normal entitlement conditions for the care component, or meet the usual qualifying period of three months. These have all been features of the system for some time, and they are designed specifically to assist terminally ill people.

The hon. Lady also, quite properly, raised the issue of people finding out in an inappropriate manner that they are terminally ill. It is totally unacceptable for someone to find that out from a jobcentre or over the phone: that simply should not happen.