Social Security (Special Rules for End of Life) Bill [HL]

Baroness Finlay of Llandaff Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare my interests as a patron of the Motor Neurone Disease Association and vice-president of Marie Curie and of Hospice UK.

I hope that when the Minister responds to this very important short debate she will be able to tell us—if I may pick up on the points made by the noble Baroness, Lady Noakes—what happens if the person outlives their prognosis and the leeway period, which, according to the government website, allows an additional two years before the benefits come up for review. As the form is to inform the claim process, will there be a process of appeal if the application for benefits is declined at the DWP, and will there be the option of an independent second opinion?

Another area of concern—I will build on the points made by the noble Baroness, Lady Brinton—is how relatives will be informed that the benefit stops as soon as the person dies. This can become particularly important when people have given up their job and have become financially dependent on all the money coming in, because they are the principal carer and acting in a greater role than any of the paid professionals who may be involved in a person’s care. There is a real problem in supporting and preparing people.

In addition, as has already been stated, the prognosis of a year is pretty well impossible. Going through the website, I recognise that the Department for Work and Pensions accepts that it is a guess to start the process, and the information on the website implies that the DWP does not attach legal responsibility to the person who is signing the forms. There is no comeback should the person outlive the prognosis—one hopes that they do.

But what if somebody is consistently wrong? What is the threshold for even suspecting that there may be abuse of the scheme? Unbelievable as it may sound, we know that the furlough scheme in the pandemic was, sadly, abused, so we must have monitoring for any system that is put in place.

Some years ago, when we were campaigning for the DS 1500, we had discussions with departmental officials on the difficulty of predicting a six-month life expectancy. Over the years since the DS 1500 has been in place, I have wanted to know how many forms have been filled out annually and the timeframe for which people have received the benefit—but I gather that this data is not kept. Given the changes now, I hope the data will be collected to map whether there are areas of underclaiming and areas where there are particularly high numbers who live for three or more years with diagnoses that would not have been expected to have high survival rates, as it may indicate excellent clinical care or it may indicate an area of inappropriate diagnostic labelling. Modern IT systems should automatically generate useful reports from the data that will be held centrally.

Patients rightly campaigned for the DS 1500 system to be modified—as did the voluntary sector. The change to one year—although prognostication is notoriously inaccurate at that time distance—has some very distinct advantages. The consistency across the Department of Health and Social Care and DWP is welcome, particularly as the government amendment to the Health and Care Bill states that patients must be able to access the palliative care they need. This should help ensure that people are referred for the support they need when they need it, rather than the “too little, too late” scenario that has happened in the past and has led, very sadly, to bad experiences and badly managed deaths.

I hope that this will also lead to more open conversations with clinicians. It is easier for clinicians to help patients plan for the worst and yet maintain hope, and therefore help patients come to terms with living with uncertainty, which is the reality of a prognosis of the last year of life—aware that the prognosis of one year can sometimes be as inaccurate as tossing a coin. For the DS 1500, it was difficult for clinicians to say, “I think that you’re in the last six months of life”, because that sounded blunt and felt like delivering a death sentence. I think that was sometimes a deterrent to those conversations happening, so I hope the important conversations will trigger advance care planning, which is already an aspiration on the website. Even more useful is to ask the patient is to ask the patient “What matters to you?”, because that can inform best-interest decision-making and prioritisation, whereas planning often fails to match the evolving clinical scenario—particularly when it evolves in a way that nobody could have predicted.

It is absolutely right that there is no age restriction on the process. As the noble Baroness, Lady Brinton, so movingly described, some very young children need a great deal of equipment and skilled attention. But here is the real problem for parents—as has been said. They give up work to care for their child, but when the child dies, all the benefits suddenly stop, so they are left both bereaved and destitute. So I hope the DWP will use careful data analysis of benefits, timelines and time of death to have a better overview and explore ways that, prior to bereavement, the parent is given the anticipatory advice and support that they will need.

Turning to the forms, there are some aspects that I think need revision for clarification, I ask the Minister and her team to meet me to go over some of the detail on the form to iron out potential difficulties. It is in the minutiae of some of the wording, but we need to make this work as well as we can. The website makes it clear that the clinician will not face an adverse consequence if the patient lives longer than expected and that the benefit received under the special rules will have the leeway of a further two years, but will claimants be informed after, perhaps, two and a half years that they should prepare to transfer their claim through the standard route rather than suddenly feel threatened at the end of that leeway period by a potential perception of loss of funding?

Then there are those patients with a catastrophic life-changing illness or injuries who need long-term care and yet do not have a prognosis of less than a year. They also need their benefits fast-tracked early on, which can later be reviewed and applied in the normal way where processes are slower. I wonder how the Government see that we might be able to accommodate somebody who, for example, following a catastrophic accident and catastrophic head injury, needs a great deal of care and attention and will not improve dramatically enough to become independent.

However, with all of those caveats, I welcome all the work that the Government have already put into this—their thought, care and attention—and I commend the charities who have been campaigning for so long to make sure that people get the benefits that really will make a difference to the quality of life and will support clinicians in having those difficult but terribly important conversations.