On 24th May 2022, the house debated the Social Security (Special Rules for End of Life) Bill in its second reading. The Bishop of Carlisle spoke in support of the bill, mentioning caveats relating to palliative care and prognoses. The Bill was committed to a grand committee.
The Lord Bishop of Carlisle: My Lords, from these Benches I am glad to be able to support the Bill, which is welcomed by so many charities and which will bring relief to so many anxious families. It seems to have four significant strengths, the first being clarity. The rules surrounding benefits and healthcare at the end of life are confusing and not always easy to navigate. The Bill goes some way towards making things simpler and more straightforward both for people who are terminally ill and for their families, and that has to be a good thing.
The second strength is consistency. As we have heard, the Bill will put disability living allowance, personal independence payment and attendance allowance on the same footing as universal credit and employment and support allowance. However, it will also provide consistency with the definition of “end of life” currently used by the NHS, as well as providing consistency with other parts of the United Kingdom.
The third strength of the Bill is its concern for the whole person. It takes seriously the fact that a diagnosis of terminal illness brings with it a wide range of emotional, practical and spiritual worries, along with the physical symptoms that may or may not already be evident. By cutting down on bureaucracy and by ensuring a measure of financial assistance, the special rules will at least alleviate some of the distress that people currently experience.
Fourthly, I believe that the provisions of the Bill command fairly widespread cross-party support and I do not imagine that they will be greatly opposed.
However, having made clear my support for the Bill, none the less I will mention two little caveats which need to be borne in mind as we move forward. One has to do with the difficulty of making an accurate prognosis. As Sarah Newton, then the Minister for Disabled People, Work and Health, pointed out in 2018, the longer the prognosis, the less likely it is to be accurate. Making the period longer than six months would therefore make the diagnosis and potentially the conversation between doctor and patient that much more difficult rather than, as we were just hearing, easier. This has obvious implications both for the patient and for the doctor, and for the benefits paid out.
The second caveat concerns palliative care, which is frequently raised here in your Lordships’ House—it was mentioned just now by the noble Baroness, Lady Brinton, with particular reference to children. While I welcome the financial provision that the Bill makes more possible, I hope that the Minister may be able to reassure us that it will not be at the expense of better and more widespread palliative care for all those nearing the end of their lives. This must be both/and, not either/or, as we seek to ensure the best possible treatment— physical, emotional and spiritual—for all those who are terminally ill.
Extracts from the speeches that followed:
Baroness Janke (LD): My Lords, like other Members I welcome the Bill and the changes it introduces. As the noble Baroness said, it is right that we pay tribute to some of the campaigners. The Scrap 6 Months campaign, launched by the motor neurone disease charity and Marie Curie, called for urgent review of the special rules for terminal illness. The campaign identified that more than 100 people a month will die within six months of being rejected for disability benefits, spending their last weeks fighting for these. The noble Baroness, Lady Noakes, described to us the situation suffered by people with motor neurone disease, as well as their specific and intensive care needs.
Dying people were being plunged into uncertainty and a web of complexity in the process of applying for benefits under the SRTI scheme. The DWP’s failure to recognise when someone was reaching the end of their life resulted in benefits being cut, non-medically trained assessors failing to understand the severity of the circumstances suffered by some individuals and, as the noble Baroness, Lady Finlay, identified, the need for an independent procedure for appeal. DWP non-specialist clinicians challenged medical evidence provided by doctors, which resulted in delays and rejected claims or lengthy application processes and untimely decisions, even though a medical examination was not necessary under the fast track.
The APPG for Terminal Illness published a report, Six Months to Live?, which also contributed to the policy debate on reform and put forward a number of important proposals. The report highlights some of the difficulties suffered because of long and arduous DWP processes. My noble friend Lady Brinton referred to this and to the frustration of people trying to process their claims. The noble Lord, Lord Balfe, also mentioned the issue of people being able to access the claims procedure properly and identified the need for publicity. The right reverend Prelate the Bishop of Carlisle really welcomed the idea of more clarity and a simpler process that is much more easily understood by claimants.
Baroness Sherlock (Lab): Since we have a legislative process to go through, this is a chance for the Government to bring the House up to speed on how people with terminal illnesses are being supported in our country. So, I have a few questions. The Government offer two arguments for this approach, the first of which is to align DWP’s approach with that of the NHS. Some interesting comments have been made: by the right reverend Prelate the Bishop of Carlisle about the importance of this being truly holistic—looking at people’s physical, mental, spiritual and financial needs—and by the noble Baroness, Lady Finlay, who, with her characteristic expertise, has helped us to understand the nature of the conversations that might happen.
I pause briefly to say that I think some clinicians find those conversations easier than others. Given that so much hinges on this, it will be important for the Minister to work with colleagues in the Department of Health and Social Care to make sure that appropriate information and encouragement is given to all clinicians to cover the full range of issues at the 12-month point. For reasons that the noble Baroness, Lady Finlay, explained, this can be a little complicated because of the imprecision of diagnoses at that distance.
The second argument given by the Government is that, when the six-month rule was introduced in 1990, many people with a life-limiting diagnosis were unlikely to survive for more than six months, but that advances in diagnosis and treatment have since moved on and now people live for much longer. The question of how long people live is pertinent to the way the special rules are framed. The right reverend prelate the Bishop of Carlisle raised questions of prognosis. The noble Baroness, Lady Noakes, gave a brief but very helpful tribute to the MNDA and highlighted the challenges for people living with motor neurone disease.
As the MNDA has pointed out, some people will of course outlive their prognosis. They could find that they are still alive after the three years for which the special rules award is offered, but are very ill—perhaps ventilated, completely paralysed or unable to speak. At that point, they will be asked to make a new application for fresh benefits. The MNDA argues that, since motor neurone disease is incurable and progressive, the benefits awarded under special rules should be lifelong. It points out that, if you apply under the normal rules, you could end up with an ongoing award with only a light-touch review at the end of a 10-year point, but you do not get that under special rules.