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

Patrick Grady Excerpts

2nd reading
Thursday 8th September 2022 Commons Chamber

[Patrick Grady (Glasgow North) (Ind)]

Like other Members, I am keeping the Queen and her family in my thoughts and prayers at this time.

It is always refreshing when consensus breaks out in the House, and that has, more or less, been demonstrated this afternoon. I pay tribute to the Members who have spoken who have campaigned on this issue for considerably longer than I have—for many years. We will almost certainly all have constituents who stand to benefit almost immediately once the Bill is implemented. Indeed, many of us will have friends and family, in our constituencies or elsewhere, who will feel the positive impact.

As a number of Members have noted, the direct application of the Bill in Scotland will be partial, because the disability living allowance and the personal independence payment have been replaced by the child and adult disability payment schemes respectively. In due course, the attendance allowance will be replaced by the pension age disability payment.

The Scottish Government have taken a distinct approach by placing dignity, fairness and respect at the heart of social security, which they recognise as a human right. They think that it is not about the beneficence of the state but is something that people are inherently entitled to, so that they can live an adequate and humane life. Therefore, when these payments are made available to people in Scotland who have received a diagnosis of a terminal illness, there will not be a specific time limit. Social security becomes available if a clinician determines that their patient has

“a progressive disease that can reasonably be expected to cause the individual’s death.”

The UK Government will at some point have to review the implementation and effectiveness of the Bill after it has been enacted—I hope to have a bit more to say about that in Committee—and when that time comes, they should look carefully at the experience and approach being taken in Scotland and at whether it is working.

The overall costs of the Bill to Government—whether in Scotland or the UK—are not exorbitant, but the difference that will be made to the lives of those in receipt of benefit will be significant. The 12-month limit, instead of a six-month limit, will remove uncertainty in the most difficult of circumstances and provide quicker and easier access to support at a time when it is needed most. That will be true across the spectrum, no matter the age of the individual or the shape of the household. It does seem, however, that the changes will be particularly welcomed by people and families of working age, who often feel the impact of a terminal diagnosis particularly hard.

As others have said, Marie Curie is one of a number of organisations who have campaigned for many years for the Bill to be introduced. All those groups should be congratulated. Marie Curie research shows that 90,000 people die in poverty every year in the UK. One in four terminally ill people of working age spend the last year of their lives in poverty, so the quicker and easier that it is to access these benefits, and the earlier that that can be done in the diagnostic and clinical journey, the better. With a terminal diagnosis, time becomes even more precious, and that time should not be frittered away because of money worries or state-imposed bureaucracy.

The Marie Curie “Dying in poverty” report contains some powerful and moving testimony from people and families around the UK who are struggling to make ends meet while dealing with a terminal illness. One of those who shared their experiences is Melanie, who, as well as being a constituent of my hon. Friend the Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), is a close personal friend of mine. I have known her husband, Tom, since we were the same age as their wee boy is today—he is also my godson—and I had the immense privilege of being the best man at their wedding earlier this year.

Mel spoke to the BBC about how radically their lives have changed since she was diagnosed with stage 3 cancer last year. They are experiencing what many families and households experience when one of their number becomes terminally ill. The chances are that the person with the illness stops working and at some point begins to lose contractual or statutory entitlements to sick pay. However, with reduced mobility and greater support needs, their partner finds that they, too, need time off work and perhaps a reduction in hours, which, in turn, means a further reduction of income. That is at a point when costs and outgoings begin to increase—for adaptations to the house, more specialised food or drink and more frequent trips to the hospital—and that is exactly what has happened to Mel, Tom and their family.

When Mel gave her testimony to Marie Curie and the BBC, she said it was not because they were special—although they are very, very special indeed to me—but because what they are experiencing is typical. Cancer support forums and other terminal illness support groups are full of such stories, and we have heard others from across the House. For thousands of families like them across the country, the situation this winter is not going to get any easier. Skyrocketing energy prices will lead to exceptionally difficult choices, even with the support packages announced today. “Heat or eat” is a phrase that we hear so many times in this Chamber, but that is the almost impossible choice facing people with a terminal illness. Warmth and good nutrition are essential if medical treatments are to have any chance of prolonging or improving quality of life and if palliative care and pain medication are to have any kind of impact. It is not just about the costs of food and fuel; energy-efficiency measures such as a new boiler, a window or wall insulation are rarely completely cost-free. That means more up-front capital expense at a time when savings are dwindling, if they still exist.

The last time Mel and I spoke about the Bill, she made an important point. The changes that we are debating today and the further changes that Marie Curie and others are calling for are not specifically about tackling the wider cost of living crisis that is affecting the country today. Even if inflation were low and energy prices were stable, research shows that a terminal diagnosis could cost a household as much as £12,000 to £16,000 per year. People need support. People are entitled to support to help them to get through these most difficult of times, focus on their life, their family and their loved ones, make memories and savour the moments while they can. They should not have to worry about whether they can keep their houses warm or fill up the tank to drive to hospital for treatment.

Urgent action must be taken to support everyone who is feeling the impact of the cost of living crisis, including those who are diagnosed with a terminal illness, but that needs to happen above and beyond the provisions of the Bill. For working-age households in particular, a terminal diagnosis often creates its own cost of living crisis or, worse, cost of dying crisis. Basic human dignity should mean that those who can no longer be an active part of the workforce and who are faced with the end of their life are adequately supported to spend what remains of their time as comfortably as they can.

The Marie Curie report makes some recommendations for further steps, such as bringing forward eligibility for the state pension. We might be able to discuss that point in a little more detail in Committee, but for now I think we need to welcome the consensus for the Bill’s Second Reading. For some families, as my hon. Friend the Member for Inverness, Nairn, Badenoch and Strathspey said, it has come too late. It has taken years of campaigning to bring about a change that will cost very little to the Government but that might make all the difference to those who will benefit.

Passing the Bill today will not be job done. Its provisions must be kept under review and benchmarked against better or best practice in Scotland or elsewhere. If individuals and families, like my friends, who want to make the most of their time together after a terminal diagnosis think that further, different or more support is needed, they should be listened to and it should be provided.