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.