Housing Systems: Combating poverty and sustaining tenancies.
Universal Credit for those with a Terminal Illness

  • Where someone who has a terminal illness is making a new claim for UC they can request to by-pass the requirement for a claimant commitment - click here. And if they will struggle to make the claim on-line and have no support to help them make the claim and are unable to make the claim themselves over the telephone, they can request that the DWP visit them to help make the claim and verify their ID.

  • An existing UC claimant may be diagnosed with a terminal illness - they can remain on UC.

  • Any conditionality ie work search requirements - may change.

  • The amount of UC they are entitled to may increase because they are entitled to a Limited Capability for Work Related Activities Element.

  • Where it is a dependent child who is diagnosed as having a terminal illness, the claimant's UC award can increase if DLA/PIP is awarded to that child.

Terminal Illness under the 'special rules'

If someone is diagnosed as terminally ill and their death could reasonably be expected within 6 months, their GP or consultant should complete form DS1500. This form is the doctor’s confirmation that the patient falls under the ‘special rules’ for benefits purposes.

After receiving this diagnosis, a person may need to make a new claim for Universal Credit (eg because they have finished work), or they may already be getting Universal Credit, in which case they will need to report their diagnosis as a change of circumstances.

The claimant will be asked to provide the DS1500 form.

Note that:

  • Some doctors now send the DS1500 form to the DWP directly online.

  • When a claimant notifies DWP that they are terminally ill, Neil Couling has stated in a letter that DWP will establish first if PIP*/DLA/AA/AFIP already has a DS1500 in which case the LCWRA status will be applied immediately.

  • Where a claimant has indicated they are terminally ill but no DS1500 is yet in place, the claimant is asked to submit this; and they should be considered for an immediate referral for a Work Capability Assessment under the Terminal Illness category: these referrals should be cleared by the DWP's medical services provider within 3 days (but see "Problems" below).

  • If the claimant has claimed PIP*, or New Style ESA, they may have sent their DS1500 to another DWP department; if this is the case, the UC department should obtain the evidence from the other department. 

*A terminally ill person should qualify immediately for the enhanced rate of the daily living component of Personal Independence Payment - click here. This will be extra income paid separately and on top of their Universal Credit. 

How is the UC award affected?

  • Where the claimant or their partner (ie joint claimant) fall under the 'special rules' the Limited Capability for Work Related Activity (LCWRA) Element should be included in their UC award from the first day of the Monthly Assessment Period in which the claimant (or joint claimant if a couple) was diagnosed as terminally ill. (UC, PIP, JSA & ESA (D&A) Regs, Sch 1, Part 3 para 28). 

  • This means, for existing claimants, if the diagnosis was made more than one month previously, they should be due some arrears of UC as the LCWRA element can be added to the appropriate previous Monthly Assessment Period(s).

  • And new UC claimants who fall under the 'special rules' will not have to serve the 3 month ‘relevant period’. (Reg 28 (5) UC Regs 2013).

  • Their claimant commitment should be reviewed straight away, so that there are no work related requirements.

  • Where a claimant (or joint claimant) has been awarded the daily living component of PIP or AA, any housing cost contributions (non-dependant deductions) should be removed from the start of the Monthly Assessment Period during which the PIP or AA award started.#

  • An award of PIP or DLA under the special rules could also mean an extra bedroom is allowed under the size criteria if the terminally ill person has a non-household carer, or is unable to share a bedroom. Again this should take affect from the date the PIP or AA was awarded from.#

  • A Carer Element can be included if the claimant (or joint claimant) is spending 35 hours per week caring for someone who is awarded DLA/PIP/Attendance Allowance/Armed Forces Independence Payment under the special rules. This can also be awarded retrospectively to the start of the Monthly Assessment Period during which the DLA/PIP etc award started if the disabled person is part of the claiming family (at the time the PIP/DLA etc claim is made, it would be wise to report to the UC department that the carer is spending 35 or more hours per week caring - otherwise, when the PIP/DLA etc is awarded at a later date, the decision maker may decide not to award the Carer Element retrospectively as the evidence of the hours of care was not provided at the time).# 

  • The carer may need to have their claimant commitment reviewed – they should have no work related requirements.

What if it's a dependent child who is terminally ill?

  • If it is a dependent child who is terminally ill, the higher Disabled Child Element should be included in the UC assessment from the start of the Monthly Assessment Period during which the DLA/PIP award started.#

  • If the claimant (or joint claimant)is caring for the child then they may be entitled to a Carer Element - see above.

What if it's a non-dependant who is diagnosed as being terminally ill?

  • Where a claimant (or joint claimant), or non-dependant has been awarded the daily living component of PIP, any housing cost contributions (non-dependant deductions) should be removed from the start of the Monthly Assessment Period during which the PIP award started.#

# This is known as the ‘qualifying benefit’ rule. See here for more details.  

Possible problems for terminally ill claimants with claiming UC

In some circumstances, the claimant is not made aware of their prognosis, either because they do not want to know or because it would be harmful to them if they were made aware. The DS1500 form asks the doctor to confirm if the patient is aware of their condition and/or prognosis and, if unaware, the name and address of the patient’s representative who is requesting the DS1500. The PIP, Disability Living Allowance, Attendance Allowance and ESA departments have special arrangements whereby they use discretion and deal with claimants sensitively and carefully, without disclosing their prognosis. 

The UC processes do not appear to allow for this type of flexibility or special arrangement- and this has been acknowledged by Neil Couling in a letter sent to the National Association of Welfare Rights Advisers.
The problems include: 

  • The claimant will be expected to complete their claim online and they will need to answer: ‘Has your doctor said you might have lass than 6 months left to live due to any conditions?
  • If they are already on UC and need to report their diagnosis as a change of circumstances, presumably the UC dept will ask for the same information.
  • Any information will be logged on the journal and visible to the claimant.
  • The explicit consent rules require that the claimant is specific about what they are authorising someone to deal with the DWP on their behalf about – it could be very difficult to manage this process without the claimant being made aware of their diagnosis.

Another issue could be the process requiring the claimant to attend the jobcentre. If making a new claim, the normal procedure is for the claimant to attend a new claim interview. A discussion about the claimant commitment should not be required if the information that the special rules should apply is available, as there should be no work related requirements. But, there is a risk that if the claimant is not aware of their prognosis and has not therefore provided the relevant information on their claim, they will be expected to attend a new claim interview to discuss their claimant commitment and this could put their health at risk (eg. if undergoing cancer treatment they may be more prone to infection so should avoid public places).

They may be required by the claiming process to book and attend a verification interview at the jobcentre. Again, this may not be appropriate. They should request a home visit instead. The National Association of Welfare Rights Advisers (NAWRA) has reported that terminally ill claimants are being told they must be interviewed by their work coaches, and it appears they system of referral for immediate Work Capability Assessments has not been working as well as it should.


What if the claimant’s prognosis is more than 6 months?

If the doctor or consultant has decided that it is not appropriate to complete the DS1500 form, the claimant will not fall under the ‘special rules’ for benefits.

However, a claimant can be treated as having a ‘limited capability for work and work related activity’ in the following circumstances: (UC Regs 2013, Schedule 9)

  • If the claimant is receiving treatment for cancer by chemotherapy or radiotherapy, or is likely to receive such treatment within 6 months, or they are recovering from such treatment, the decision maker can, if they decide it is appropriate, treat the claimant as having a ‘limited capability for work and work related activity. 
  • If the decision maker finds that, due to the claimant’s health condition, there would be a substantial risk to the claimant if they were not found to have a limited capability for work and work related activity, they can treat the claimant as such.

If neither of the above is applicable, it is worth checking if any of the descriptors in Schedule 7 (Assessment of whether a claimant has limited capability for work and work related activity) of the UC Regs applies. 

If this is a new claim for UC and the special rules for terminal illness do not apply, there will normally be a 3 month wait for the LCWRA element to be included, called the ‘relevant period’. 

Alternatively, if none of the above apply, the claimant could be assessed as having a limited capability for work only. This may be based on them scoring 15 or more points from Schedule 6 of the UC Regs (Assessment of whether a claimant has limited capability for work) or perhaps one of the circumstances listed in Schedule 8 (in which a claimant can be treated as having a limited capability for work) eg. The claimant is suffering from an uncontrolled or uncontrollable life threatening disease, or there would be a substantial risk to them if they were found not to have a limited capability for work (paragraphs 4 & 5 of Schedule 9 of UC Regs 2013).

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