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

Baroness Janke Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

[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.

The changes themselves are welcome: the extension of the definition of “terminal illness” to 12 months and the benefits to be fast-tracked being extended to DLA, attendance allowance and PIP. As many Members have mentioned, consistency with the NHS is also to be welcomed. However, being diagnosed with a terminal illness is already difficult and distressing, not only for the person but for their loved ones. From what I have read, it seems that the benefits system should better support people in that situation, not exacerbate their distress or place unreasonable burdens on medical professionals. There are other things that could change that could make things easier and apply a much more compassionate approach.

Unfortunately there is plenty of evidence of the lengthy, complicated and often repetitive procedures and practices of the DWP, which obstruct people who have other major pressures in their lives. My noble friend Lady Brinton asked how long the process will take and hoped that the 12-month extension will not lengthen the process and make it more inaccessible. In the light of this evidence, will the Minister say how DWP processes will enable faster decision-making? Will the Government consider some form of special unit to be sure that the additional six months will not result in more delay to decisions on claims? The points my noble friend Lady Brinton raised about eligibility for benefits for children is an area that needs to be examined, and the noble Baroness, Lady Finlay, mentioned the need for more extensive examination of centrally held data to provide a background to policy-making.

The report of the APPG for Terminal Illness makes a number of recommendations that would improve the system. One is that a person who is diagnosed with a terminal illness based on the clinical judgment of a registered medical practitioner should be able to claim benefits through the special rules from the time of their diagnosis. What is the Minister’s response to that? When will the Government consider this more compassionate approach? Given the circumstances at the end of life, when doctors are reluctant to provide evidence that is distressing for the individual and their loved ones, this approach is far more flexible and compassionate.

The report further recommends that the DWP should adopt the same approach as it has taken for severe conditions, with a light-touch review of benefit awards under the special rules for terminal illness only after 10 years. This would provide a more flexible approach and would dispense with the constant need for reassessment and reapplication, which happens in too many cases.

Lastly, it recommends that the DWP ends the practice of non-specialists DWP assessors challenging and rejecting the medical evidence provided by clinicians to support a benefit claim under the special rules. This is another aspect of DWP working that needs review. Will the Minister respond on this?

Will the Minister assure us that there will be a review of DWP practices in the light of this legislation? It will be essential if the fast-track system is to work effectively, so that people at the end of life with special, intense and often costly needs receive the benefits on which they depend in a timely and compassionate way.