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

Matt Rodda Excerpts

2nd reading
Thursday 8th September 2022 Commons Chamber

[Matt Rodda (Reading East) (Lab)]

I welcome the Secretary of State and the Minister of State to their new posts. I thank the Secretary of State for introducing this short but important Bill.

As we have heard, the intention of the Bill is to amend the definition of “end of life” in existing legislation, extending it from six to 12 months. That will have the knock-on effect of changing eligibility for disability living allowance, personal independence payment and attendance allowance so that individuals who are deemed by a clinician to have 12 months or less to live can have fast-tracked access to those benefits. We are, of course, supportive of those changes and have chosen not to table any amendments to the Bill. However, there are a number of points I would like to raise.

First, it is somewhat disappointing that it has taken the Government so long to bring in the changes. The Department first launched an in-depth evaluation of the special rules for terminal illness as long ago as July 2019. The findings showed clear support for extending the definition of end of life to 12 months. We then had to wait until July 2021 for the Government to announce their plans to bring in the change. In April 2022—a further nine months later—the Department amended the eligibility criteria for universal credit and employment and support allowance through regulation changes. Here we are another five months on and the necessary alterations to primary legislation to do the same for personal independence payment, disability living allowance and attendance allowance are only just making their way through the House. It is a difficult but unavoidable fact that while we have been waiting for this to happen, people who could have benefited from the changes have passed away.

My second observation is that we need reassurance from the Department that fast track really means fast track, and I am grateful to the Minister of State for indicating her support for that approach. In her speech on Second Reading in the other place, the Minister, Baroness Stedman-Scott, estimated that the changes brought forward in the Bill could mean that 30,000 to 60,000 more people may benefit from the special rules. She also stated that it currently takes an average of three working days for new claims and four working days for assessments for PIP under the special rules criteria. If those turnaround times are to be maintained, there will clearly need to be a significant increase in staffing capacity in the Department. What reassurances can the Secretary of State give us today that her Department will have the additional capacity needed?

Thirdly, I know that there are concerns among clinicians and others about the accuracy with which it is possible to determine that an individual is entering the final 12 months of their life. The new rules bring the Department’s definition of “end of life” in line with NHS guidance, which is welcome. However, the NHS itself acknowledges that it is,

“not always possible to predict”,

the end of life with complete certainty.

The Motor Neurone Disease Association, which, as we have heard, has done a lot of important work in pushing for this change, makes this case very clearly. Motor neurone disease often progresses very rapidly, with one third of people dying within a year of diagnosis and around half within two years. Yet it is impossible to give an exact prognosis, as the disease is so complex and unpredictable.

Under the current rules, many people living with MND are left to navigate the standard route for claiming benefits, which is entirely inappropriate given their circumstances. Although it is supportive of the changes, the association notes it would have preferred the UK Government to follow the Scottish example and introduce a criterion with no specific time limit, relying instead on the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause their death.

That leads us to a further point: benefits awarded under the special rules are granted for three years. Where an individual outlives their prognosis and the three years expire, they then have to make a new claim despite, in some cases, being completely paralysed, unable to speak or ventilated. That adds an unnecessary extra burden to individuals and their families and carers at an extremely difficult time.

We also need absolute clarity around how clinicians will be informed of the changes and, most importantly, how the Department will ensure that the relevant information is communicated effectively and in a consistent, sensitive and timely fashion. It is one thing to legislate for these changes, but another to ensure that they are filtering through to those who most need to understand them.

I cannot finish without recognising the incredible toll that caring for someone who is sadly at the end of their life has on family members and friends. Some unpaid carers will have given up their own job and become financially dependent on social security payments. It is imperative that they are supported and prepared for the stopping of benefits when the person they are caring for passes away. It is unacceptable that people who have fulfilled such an important role and—we should be honest here—saved the public valuable money should be left both bereaved and, on occasions, destitute.

That is, of course, particularly the case for parents. It is easy to focus on older adults when considering end of life care, but of course that is also the reality of families with terminally ill children. I echo the calls made so eloquently by Baroness Finlay of Llandaff and Baroness Brinton in the other place for a wider review of the benefits available to families facing that awful situation.

For example, the families of seriously ill babies and small children do not currently have access to the mobility component of disability living allowance. Many of those children require round-the-clock care and use ventilators, monitors, oxygen and other vital equipment. Although DLA is available to all families who incur extra costs as a result of meeting the additional care or mobility needs of a child, only those with children over the age of three can receive the higher rate mobility component. I appreciate that that falls outside the scope of the Bill, but it ties in with the need to ensure that individuals and families are given as much support as possible in these most difficult of circumstances.

I finish by reiterating that we are fully supportive of this Bill. I look forward to hearing the valuable contributions that I know others will be keen to make and to this legislation’s continuing to make its way through this House.

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

Matt Rodda Excerpts

Committee stage
Thursday 8th September 2022 Commons Chamber

[Victoria Prentis]

That sounds like a very sensible suggestion from the former Minister, and if I am charged with this policy area when departmental briefs are fully worked out, I will ensure that I keep up a close dialogue with the Scottish Government on how the two systems are working, both separately and together.

We will also continue to work with the Department of Health and Social Care to assess the impact of these changes on the end of life care provided by the health and social care system as a whole. If at any time a more comprehensive evaluation of the policy is required, we will, of course, commission one, as we did in 2019. The Government want to do all they can to alleviate the pressures on those nearing the end of their lives, and on their families. Our priority is providing people with financial support quickly and compassionately. We are determined to ensure that people have certainty about when they can expect to receive their state pension and that the state pension system is fair to future generations. I hope that this answer has helped to address some of the questions that the hon. Member for Glasgow North may have had, and I understand that he does not intend to press his amendment.

[Matt Rodda]

May I support and associate myself with the comments made by the Leader of the Opposition about how we are thinking about the royal family at this difficult time?

I have already outlined our support for this Bill and highlighted several areas in which I believe the House seeks further clarification. I thank the Minister for her responses on some of those, and I look forward to further clarification. As we consider the next stage of the Bill, I would like to share a few case studies from people whose lives have been impacted by the rules, so that we can consider this issue more fully. I also wish to thank Marie Curie for highlighting these cases.

The first case is that of Lorraine Cox from Enniskillen in Northern Ireland. When Lorraine was diagnosed with motor neurone disease in 2018, she applied for personal independence payment to help mitigate the impact the disease was having on her daily life. Sadly, to her shock, her claim was declined. Lorraine took her case to judicial review and it became influential in convincing the Department for Work and Pensions to change the law through this Bill. Sadly, Lorraine passed away in July 2022, while the Bill was still awaiting its passage through the Commons. Lorraine spoke to Marie Curie in 2019 about her experiences, and I will share some of her words with you now.

Lorraine said:

“From the moment I started the application process, I felt like I wasn’t being taken seriously. Just because I don’t look ill—I still wear make-up and dress well every day—that doesn’t mean that I’m less entitled. People don’t realise the impact MND can have on your life. It’s the little everyday things that become a struggle.

I’ve completely lost the feeling in my left hand. I can’t make my own bed, my children help me get dressed, I have a cleaner, I can’t cook the way I used to. My balance is off, and I can now feel my foot starting to go too.”

As part of her PIP application, Lorraine had a face-to-face consultation with a disability assessor. It was after this consultation that she was told her application had been declined. She said:

“I felt so angry when I was assessed as not fitting the criteria. It’s very disheartening and I just don’t understand why it has to be so difficult. Work is very important to me as it gives me some independence and allows me to focus on something else. It’s a bit of escapism from my condition.”

--- Later in debate ---

[Matt Rodda]

I thank the Minister for her remarks as well as all the hon. Members who have taken part today, including my hon. Friend the Member for Newport East (Jessica Morden); the former Minister the hon. Member for North Swindon (Justin Tomlinson); the hon. Member for Glasgow North (Patrick Grady); the Chair of the Select Committee and others. I, too, pay tribute to the charities, organisations, trade unions and individuals who have campaigned tirelessly to ensure that these changes are introduced.

As we have already heard, congratulations in particular go to Marie Curie and the MND Association for their Scrap 6 Months campaign. I also pay tribute to all the individuals impacted by this, their families and carers.

This is a short Bill, but it will have a huge impact on many people’s lives at an incredibly stressful time. It is a privilege to play a part in the process of making people’s final months somewhat easier than they might otherwise have been. We chose not to table any amendments to the Bill even though I would have welcomed the opportunity to explore further some of the issues highlighted on Second Reading. It is imperative that we get the Bill on to the statute book as soon as possible so that people can start to benefit from the amended definition of end of life. As things stand, fast-track access to universal credit and ESA is available for those with 12 months to live, while PIP, DLA and attendance allowance are only available for those deemed to have six months to live. That is understandably causing confusion, and everything must be brought into line as quickly as possible.

I shall end by reiterating two very important points. First, will the Minister consider following the Scottish Government in taking a more open-ended approach, rather than insisting that awards made under the special rules can last for only three years? Will she commit to evaluating the relative effectiveness of the two different approaches in the coming months?

Secondly, I return to my point about seeking reassurances about how the Department will ensure that it has the capacity to maintain a truly fast turnaround time for applications made under the special rules. Will it monitor how many people receive their claims before they die? Will it also evaluate how well information is being filtered down to clinicians and others who need it so that they find the process easy to navigate.

Once again, I thank the Minister and colleagues for their thoughtful contributions. The Bill has our full support.