Benefits (Terminally Ill Patients)

Meg Hillier 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.

[Helen Goodman (Bishop Auckland) (Lab)]

My hon. Friend has concentrated on people with cancer, but I have a constituent who developed cerebellar ataxia, which is a chronic and progressive illness resulting from the degeneration of nerve tissue in the spinal cord. It leads to muscle weakness, loss of co-ordination, vision and hearing impairment, slurred speech, heart disorders, progressive staggering or stumbling, and frequent falling. My constituent was initially disallowed her ESA. An assessment restored it. Since then, despite the fact there is a letter from a consultant, she has been told she must regularly have a work capability assessment. That is not only deeply distressing and unpleasant for her, but it is a complete waste of public money.

[Meg Hillier]

My hon. Friend makes a powerful point, and I am sure the Minister is ever alert to the impact of decisions on the public purse. One of the things I would say about this issue is that it is not necessarily the case that getting this right for terminally ill patients would cost the public purse any more money; this is simply about making the system work better.

My hon. Friends have raised some individual cases, and I would like to highlight some from my constituency. These involve real people who have experienced stress and worry about money in their final months of life. Mrs A is a constituent of mine who has asked me not to identify her in the House. Her husband died six months ago, and she contacted me to tell me of his experience. Despite having a terminal illness—not cancer—he was called in for a back-to-work interview after six months on ESA. Incredibly, the assessor found him fit for work. They claimed that this was on the basis of health checks that my constituent, who accompanied him to the assessment, tells me they did not even make.

A debate in Westminster Hall secured by my hon. Friend the Member for Rutherglen and Hamilton West (Tom Greatrex) on 1 February highlighted serious issues with Atos assessments. I will not repeat those concerns here but this case underlines them, although it is worth echoing a point that he made at the beginning of that debate. I have no problem with work assessment. My issue is with the treatment of people who will clearly never go back to work because of a long-term progressive illness and who have the paperwork to prove it.

Six months later, Mr A’s case has only just gone to appeal. The assessor claims that Atos did not know my constituent was terminally ill. My recently widowed constituent is still dealing with the appeal. She said to me, “My husband worked all his life. He probably worked longer than he should have done given his health.” He was entitled to support. The treatment that he received and the stress caused by losing his benefits should not have been experienced by him in his last months of life; nor should his widow have to continue to battle after his death.

St Joseph’s has told me about two recent cases where there have been issues with assessments. A patient who was blind and terminally ill from a brain tumour was asked to attend a medical assessment. Fortunately, the hospice social worker wrote to the medical team to explain the terminal illness and point out that he was blind and could not get to Wembley independently. As a result, the assessment was cancelled.

Another patient had been found fit for work and was appealing with the help of another agency. He was terminally ill and had been awarded disability living allowance under the special rules. All the paperwork was in place, so he should never have even been called for an assessment, let alone have been deemed fit for work. When St Joseph’s stepped in and contacted the appeals section to inform it of this, his benefit was reinstated promptly. However, there is nothing to substitute for that good advice at a late stage. The system needs to work better before organisations that are attuned to this, such as St Joseph’s, Macmillan and others, step in.

Marie Curie told me that the DWP confirmed to it, on 20 January this year, that the time limit on ESA would not apply to people who were terminally ill because they were automatically placed in the support group rather than the work-related activity group under the Work programme. Under the Welfare Reform Bill, people in the support group will not have their access to ESA time-limited. This should mean that someone who is terminally ill should not be called for a work capability assessment. Will the Minister confirm that fact? Will he also tell me what he and his colleagues are doing to ensure that front-line staff are aware of it, and not putting our constituents through the pain and upset that he has heard today?

St Joseph’s hospice has raised with me a number of other problems that its clients have faced. Often a patient has missed out on benefits for a long time before being advised at the hospice about his or her entitlement, as other agencies miss the implications of terminal illness on benefits or give incomplete advice. The Minister needs to be aware of this issue, as it needs to be tackled. Hospital staff do not always refer a patient, even when help is available at the hospital.

If ever there was an area where timeliness and joined-up government was necessary, this is it. St Joseph’s can work with agencies, such as the pension service, to refer those over 60 for help claiming and completing forms. Everything does not always go smoothly, but there is a real need for a similar joined-up approach to helping those under 60 with life-limiting illnesses.

The debate over the future of welfare has been raging in both Houses and in the country since the last general election and before. There are many disagreements between the Opposition and the Minster, but we can surely agree that one core element of our benefit system is that it will support those unable to support themselves through sickness or disability.

I have highlighted just some of the cases that have been drawn to my attention. There are, I am sure, cases where patients or members of their families have died before a claim has been processed and where people might not be aware of their rights. I hope that the Minister will take on board these concerns and the impact on terminally ill patients and their families. This problem can be solved, and solved quite quickly.

What training is provided to jobcentre staff, and does the Minister have any plans to change it? Given that I have picked up on the fact that there are quite significant regional variations, how is best practice shared across the country? I urge him to ensure that no more patients face a bureaucratic maze in ensuring that they can support their families in the final months of life, and that no more widows such as Mrs A have to deal with a system in bereavement that should be supporting them when they need that support most.

The system is a lottery. If someone is lucky, they will find an adviser who can help them negotiate the system. They might find a Department for Work and Pensions adviser who understands and can fast-track their application. However, many are not getting the service and the benefits to which they are entitled. They are among those who need the support most, and they need it immediately. Add to those problems the current backlog and the lack of a freephone number, and the costs for patients already struggling with money are increasing.

The Minister must acknowledge that all is not well. I want to hear what he will do to solve those problems. Has he, for example, considered a central service, so that anyone who is terminally ill is dealt with by someone who is sensitive to their support needs? Again, I am not asking for more money; I am simply asking for the reconfiguration of the existing service, which is already being paid for by taxpayers. I urge the Minister to act now, to ensure that terminally ill people and their families are able to spend their last days without the worry that they will have to justify their entitlement to benefits.

--- Later in debate ---

[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.

[Meg Hillier]

I thank the Minister for that categorical statement. Would it not be easier for DWP assessors simply to check the disability living allowance database? They would not then have to ask for a form, which would make life a lot easier for the patient.

[Steve Webb]

Absolutely. Atos was awarded the contract to do the face-to-face assessments some years ago. In regard to data sharing, it would be aware that a DS1500 form had been completed for a claimant, so it should not need to ask for another form to be completed. I would be keen to hear about any individual cases in which that has none the less happened, when it should not have done, and we will follow them up. The intention is that, whenever possible, these matters should be dealt with on the basis of paperwork and forms that have already been submitted, rather than calling people in for a face-to-face assessment. As the hon. Lady says, calling them in is inappropriate and unnecessary, and it also costs money. There is no reason why anyone would want it to happen, and we are keen to ensure that it does not.

We also recognise that some people do not know, or do not wish to know, that they are terminally ill. The provisions for DLA allow a claim to be made for such people under the special rules by a third party, and such a claim will be handled sensitively to ensure that the prognosis is not revealed to the terminally ill person. For both benefits—DLA and ESA—processes are in place to ensure speedy access to benefits and minimal form filling. I shall talk the House briefly through the process involved. The claim is sent for urgent medical advice from medical services, which have 48 hours to provide advice on whether the individual meets the terminal illness criteria. Performance data over the last year on the typical turnaround time for these applications show that medical services are providing advice in an average of 1.2 days for ESA claims, and an average of 1.5 days for DLA claims. In general, therefore, these claims are being turned round very quickly, and rightly so.

To provide this advice, medical services can contact the claimant’s GP, or the treating health care professional, to check whether they are already receiving DLA due to terminal illness. Advice is then provided to a decision maker, who makes a judgment on the balance of probabilities and has some discretion. The whole process should take no longer than a week from start to finish. Claims for employment and support allowance are currently taking just over seven working days, and claims for disability living allowance are taking just under six working days.

Appeals have been mentioned, and I would be the first to accept that it is taking too long to deal with them. These matters are handled by the tribunals service, under the Ministry of Justice, and we are working closely with the service to try to reduce the backlog. Some progress has been made. For most of this year, the number of new cases coming in has been lower than the number of appeals cleared, but I freely accept that it is still taking too long.

There are a lot of reassessments taking place at the moment, involving people who have been on incapacity benefit for a long time, and the volume of appeals is inevitably rising as a result. When someone appeals, they stay on benefit in the meantime. I am talking now about general decisions on IB, rather than those for terminally ill people. Appealing enables the benefit to continue, so there is quite a strong incentive to do so, and the volume of appeals has greatly increased.

We are taking steps to address that. First, we are dealing with appeals more quickly. The volume of appeals processed by the tribunals service has been 66% higher in the first seven months of 2011-12 compared with 2009-10. There is much greater throughput, therefore. Secondly, we must try to get the decisions right in the first place. That is in everybody’s interests. I am proud of the Harrington review process, which analysed the very flawed work capability assessment. Professor Harrington produced his first report, and the Department accepted all his recommendations and has been implementing them. Professor Harrington has reported back, saying the Department is doing a pretty good job in taking on his recommendations. He has now produced a second round of recommendations. As I have said, the key is to get these decisions right in the first place, and we are finding that the rate of successful appeals against WCA decisions is significantly lower than under the old personal capability assessment.

[Meg Hillier]

That is all very well for the bulk of cases, but the key point in today’s debate is that those who are terminally ill should not have to go through an appeal in the first place. Speed of delivery is also important. We are hearing of serious delays for people with a terminal illness. Will the Minister move on to the element of his remarks that deal with that?