Benefits (Terminally Ill Patients)

Helen Goodman Excerpts

Thursday 9th February 2012 Commons Chamber

[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 They can have their DS1500, but by the time they stop their paid work, it will be out of date.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.