Written evidence from England at Marie Curie [UCW0059]

Background

1. Marie Curie is the UK’s leading charity for people affected by terminal illness. We deliver palliative and end of life care directly to people across the UK both in their own homes and in our nine hospices and we run an information and support service which helped over 50,000 people last year. We are also the largest charitable funder of palliative and end of life care research in the UK and we campaign to improve access to and the quality of palliative and end of life care.
    
2. Terminally ill people are entitled to fast track access to some benefits - including Universal Credit - at the highest level of payment and without having to undertake assessments or work-related activity, under the Special Rules for Terminal Illness. However, while Universal Credit claimants under the Special Rules will not have to meet work-related requirements (such as attending work-focused interviews) and receive a higher rate of payment, there is currently no fast track for payment to Special Rules claimants under Universal Credit and those claimants must wait five weeks for their first payment.
    
3. In addition, the law only recognises a person as ‘terminally ill’ and entitled to claim under the Special Rules if their doctor signs a form, known as a DS1500, saying their death can be reasonably expected within six months. The All-Party Parliamentary Group for Terminal Illness’s report of July 2019 found this definition to be arbitrary and outdated, and recommended it be changed[1].
    
4. Marie Curie and the Motor Neurone Disease Association’s ‘Scrap 6 Months’ campaign has called upon the government to scrap the ‘six-month rule’ and allow any terminally ill person to claim benefits including Universal Credit under the Special Rules if a clinician certifies they have a terminal condition which is expected to cause their death. In July 2019 the Department for Work & Pensions announced a review of the way the benefits system treats terminally ill people. This review is currently ongoing.

To what extent have the mitigations the Government has introduced so far (e.g. Advance payments) helped to reduce the negative impact of the five-week wait for UC claimants?

5. The Advance Payment system forces terminally ill people to go through another bureaucratic application process in order to receive vital income - exactly the kind of process that the Special Rules are intended to avoid for people for whom every moment matters. Such delays and processes take up time that many terminally ill people simply do not have.
    
6. In addition, the Advance Payment leaves claimants having their subsequent Universal Credit payments cut to pay back the advance. This is wholly inappropriate for terminally ill people who often have no other means of household income, for example if their illness has forced them to give up work or if family members are taking time off work to care for them. As many as
   60% of people living with some terminal illnesses rely upon benefits as their main source of income[2].

What problems do claimants still experience during the five week wait?

7. Delays receiving benefits exacerbate the difficult financial circumstances that many households living with terminal illness can face. More than two-thirds of families facing terminal illness say that they experience financial strain as a result[3] - through income loss or the added out-of-pocket costs created by illness, the total cost of living with a terminal illness can be between £12,000 and £16,000 per year[4].
    
8. Faced with the impact of additional costs and lost income, families living with terminal illness can struggle to pay important living expenses such as household utility bills or housing costs – those who do not own their home outright can be left struggling to pay their rent or mortgage. Delays receiving benefits like Universal Credit can increase the impact of these challenges and leave families having to run down savings or take on debt in order to meet their expenses for the five-week period they are waiting for their first payment.
    
9. Research from the Trussell Trust has found that the five week wait can cause significant financial hardship for families reliant on Universal Credit - including difficulties affording food or heating their home, housing insecurities such as rent arrears or risking eviction, and indebtedness[5]. Many terminally ill people will have already experienced significant financial difficulty as a result of the changed circumstances brought on by their condition - the five week wait for a payment only exacerbates these difficulties further.
    
10. For those families where a loved one has to take time off work to care for a terminally ill person, the impact of delays is compounded further. As eligibility for Carer’s Allowance is dependent on benefits being in place, a delay in getting access to benefits can leave families facing a double strain on their finances while they wait five weeks for the initial payment.
     
11. Delays in payment of benefits to terminally ill people, similarly, cause delays in their being able to access non-financial support, such as Blue Badge and Motability, or receiving an increased rate of means-tested benefits, such as Housing Benefit, Council Tax reduction or tax credits.
     
12. In the worst cases, payments ultimately come too late. More than 17,000 people have died waiting for benefits in Great Britain since April 2013[6]. Many of these people will have been terminally ill claimants for whom benefits were ultimately awarded, but delays and waiting periods like the five-week wait for the first Universal Credit payment will have left those claimants without the financial support they needed in what turned out to be their final weeks of life.
     

What is the best way of offsetting the impact of the five-week wait?

13. For terminally ill claimants who have applied for Universal Credit under the Special Rules, a delay of five weeks before the first benefit payment is made is inappropriate. We see no reason that the Department for Work & Pensions cannot ensure that Special Rules claimants are paid their first Universal Credit payment immediately.
     
14. Claimants under the Special Rules are already given a fast track application process - their applications are processed quickly and they are not required to take any medical assessments or any work-related activity in order to receive Universal Credit. Ensuring that payments are also fast-tracked will help relieve the significant financial burdens that terminally ill claimants can face during the five-week period.
     
15. This approach would also bring Universal Credit in line with other benefits where Special Rules claimants receive a fast track payment compared to claimants under the normal rules. Special Rules claimants of Employment and Support Allowance, for example, get benefits paid for the first seven days of their claim unlike normal rules claimants, while Special Rules claimants of the Personal Independence Payment and Attendance Allowance do not have to wait a qualifying period (three months and six months respectively) before their benefits are paid. These fast track payments and quick decisions recognise that a significant wait before benefits are paid is inappropriate for people with a limited time to live.
     
16. While this change would greatly benefit those Universal Credit claimants who are able to claim under the Special Rules due to having a DS1500 form from a clinician, as outlined above many terminally ill people are at present able to obtain a DS1500 unless they are ‘reasonably expected’ to die within six months. As the APPG for Terminal Illness has found, this definition is outdated and unfit for purpose - advances in treatment mean many people can live for longer with terminal conditions but still be at risk of significant financial distress without the support benefits provide.
     
17. Marie Curie believes that the Department for Work & Pensions should change the definition of terminal illness for Universal Credit and other benefits to allow clinicians to use their own judgment to determine when a patient is terminally ill, not an arbitrary six-month criteria, and certify a DS1500 for any terminally ill patient. In conjunction with paying Universal Credit to terminally ill claimants without a five-week wait for the first payment, this change will allow all people who have been diagnosed with a terminal condition to quickly and straightforwardly get the financial support they need at the end of their lives.

Is it possible to estimate how much this would cost the Department?

18. The Department has not published data on the number of Universal Credit claimants who are claiming under the Special Rules for Terminal Illness. It is therefore not possible to accurately estimate how much this change would cost.
     
19. However we expect that any additional cost will be low in the context of the overall spend on Universal Credit; the number of claimants who will be claiming under the Special Rules - even if the six-month rule is scrapped and all terminally ill people are able to claim under them - will be a very small proportion of overall claimants and the cost of providing an additional five weeks of Universal Credit payments to this group is likely therefore to be low.
     
20. According to the Institute for Fiscal Studies, in the long term, migration to Universal Credit will cut benefit spending by £2.7 billion a year[7]. In this context, any additional cost created by extending access to the Special Rules for a very small number of terminally ill people claiming Universal Credit would be marginal.

Is it possible to estimate any costs or savings to third parties (for example, support organisations)?

21. For many terminally ill people, as identified in the APPG for Terminal Illness’s report[8], receiving the right financial support through the benefits system can make the difference between them being able to cope at home and needing to go into hospital or be cared for in another setting such as a care home.
     
22. Making it easier for more terminally ill people to claim Universal Credit and other benefits through abolishing the six-month rule, and ensuring that Universal Credit is paid immediately to those claimants, may therefore enable more terminally ill people to live and be cared for outside of hospital. The potential savings to the NHS and other care providers should therefore also be considered.

Are different mitigating options needed for different groups of claimants?

23. As outlined above, we believe that terminally ill claimants under the Special Rules should be paid Universal Credit immediately and not required to wait a five-week period before their first payment is made.

Are there barriers or potential unintended consequences to removing the five week wait—either for claimants or the Department? How can they be overcome?

24. We do not anticipate any significant barriers to the Department removing the five-week wait for terminally ill people and allowing claimants under the Special Rules to be paid Universal Credit from day one. Special Rules claimants already benefit from a fast tracked application without having to undergo health assessments and are not subject to work-related activity. The only change that is required is to bring forward the first payment date to week one for this small population.
     
25. We do not anticipate any unintended consequences for terminally ill Universal Credit claimants through making this change. As outlined above, we believe that this will be of significant benefit to these claimants, alleviating the financial strain caused by terminal illness more quickly and meaning they do not have to go through the Advance Payment process only to pay this back later.

April 2020