DWP's response to the coronavirus outbreak Contents

7Special Rules for Terminal Illness

157.If someone is living with a terminal illness, their claim for certain benefits can be fast-tracked and paid at the highest rate. This is known as claiming under the Special Rules for Terminal Illness (SRTI). In England, Wales and Northern Ireland, in order to receive benefits under the special rules, a person must provide evidence that their death could be ‘reasonably expected’ within the next six months. If a person lives longer than originally expected they can continue to claim under the special rules. In Scotland, the law is different. The Social Security Act (Scotland) 2018 allows people to make a claim under the SRTI if:

‘it is the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual’s death.’199

The Special Rules apply to the following disability benefits:

They also apply to Employment and Support Allowance (ESA) and Universal Credit (UC).

158.To claim under the SRTI, a person may be asked to send a factual statement from their doctor, consultant, nurse or other healthcare professional. DWP says that the quickest and most effective way of doing this is by using a DS1500 form or DS1500 medical condition report. The DS1500 form describes the person’s illness and treatments and presents a factual report about a person’s condition and symptoms. Normally, a doctor or other healthcare professional will fill out the form before sending it to the claimant or directly to the relevant government office.200

Claims under the Special Rules for Terminal illness during the coronavirus outbreak

159.We heard from organisations who support people with terminal illnesses that there was confusion about what evidence was needed for a claim under the Special Rules. Eve Byrne, Head of Campaigns and Public Affairs at Macmillan, said that her colleagues were hearing “a lot of mixed messages” about whether the DS1500 form (or other evidence from a clinician) was necessary or if a claimant’s statement could be used instead.201 The Motor Neurone Disease Association echoed this, telling us that:

We remain unclear, despite contact with the Department, on whether easements around producing evidence for Special Rules claims have officially been made, and if so whether they will be making that information public.202

160.We also heard that people with terminal illnesses had found it difficult to get the medical evidence they needed during the coronavirus pandemic. We heard from the Child Poverty Action Group (CPAG) about an incident in which someone with a terminal illness had “problems retrieving medical evidence”, which led to him not being treated as having limited capability for work under the special rules.203 This put further stress on someone diagnosed with a terminal illness. Eve Byrne of Macmillan told us that “clinical evidence is difficult to access at this time”. She also described the difficulties faced by cancer patients, who were having to balance the risks of travelling to visit their clinician to obtain the necessary evidence against their urgent need for support from the benefits system.204 Support organisations, including Macmillan, have called on the Government to ‘relax the rules’ during the pandemic.205

161.The Minister for Disabled People, Health and Work, Justin Tomlinson MP, said that he understood that “it can be difficult at the moment for people to get the DS1500” and that the Department had therefore “taken on board a very claimant-sympathetic approach in terms of the oral evidence [provided by claimants].”206 He later clarified in writing that:

DS1500s are not a requirement for a claim under the terminal illness rules but remain the quickest route to gather evidence to support these cases… Where it is not possible to supply a DS1500 in support of a terminal illness claim we will continue to consider alternative evidence and work flexibly with the claimant and/or their clinician(s) to make a quick determination.207

162.Being diagnosed with a terminal illness is already difficult and distressing—not only for the person themselves, but also for their loved ones. The benefits system should support people in that situation, not exacerbate their distress. Nor should it place unreasonable burdens on medical professionals at any time, still less during a pandemic. But we have heard evidence that DWP’s guidance to terminally ill people, support organisations, and clinicians has been unclear and confusing. That must change.

163.We welcome the Minister’s assurances that the Department is taking a sympathetic approach to claims made under the Special Rules for Terminal Illness, and that there is no requirement to provide a DS1500 form. That message has not yet been communicated effectively. We recommend that the Department publish clear guidance for claims made under the Special Rules for Terminal Illness, including the fact that a DS1500 form is not required. It should also make clear, including on its own website, what alternative forms of evidence DWP would accept.

Timeliness of claims under the Special Rules for Terminal Illness

164.The Minister for Disabled People, Health and Work, Justin Tomlinson, told us in oral evidence that he understood that the Department’s average turnaround for processing these requests was six days.208 We asked him to confirm this in writing. In response to our letter, however, the Minister did not address this question, saying only that “Supporting people who are terminally ill remains an absolute priority for the Department and we continue to fast track these claims.”209

165.We were disappointed that the Department was not able to confirm to us how quickly claims made under the Special Rules for Terminal Illness are being processed. We recommend that the Department publish the average processing times, by month, for claims made under the Special Rules for Terminal Illness.

Review of Special Rules for Terminal Illness

166.In July 2019, following concerns from charities and medical professionals, the Government began a review of how the Special Rules for Terminal Illness were working. Announcing the review, the Department said that it was setting up “an honest and in-depth evaluation of how the benefits system supports people nearing the end of their life and those with severe conditions”. The press release said that the then Secretary of State, Rt Hon Amber Rudd, had ordered the Department to “seek the views of a wide range of people, including patients, doctors and nurses.”210

167.On 9 March 2020, the Minister for Disabled People, Justin Tomlinson, was asked what progress the review had made. He told the House that the Department was “making significant progress on this, having engaged with claimants, clinicians and stakeholders to bring forward options.” He explained that the organisations involved in the review included the MND Association, Marie Curie, Hospice UK, Macmillan, the Royal College of Nursing, Sue Ryder and NHS England. He said that the review would “conclude shortly”.211

168.Concerns about how well the Special Rules for Terminal Illness are working are not new. The Department has been conducting a review since July 2019 and we look forward to seeing its results soon. We expect to return to this issue, and in particular to seek the views of medical professionals, in our future work on health assessments in the benefits system.

199 Social Security (Scotland) Act 2018, Schedule 5.1(2)

200 Department for Work and Pensions ‘Benefits if you’re living with terminal illness’, accessed 27 May 2020

202 Motor Neurone Disease (MND) Association (SWP0063)

203 Child Poverty Action Group (SWP0064)

211 HC Deb, 9 March 2020, Col 9 [Commons Chamber]

Published: 22 June 2020