“Small change” for dying, when law needs change

30 April 2019

The Committee is today issuing the latest in a long series of requests, questions and recommendations to DWP on the Special Rules for Terminal Illness (SRTI), written into law around the time DLA was introduced in the early 1990s.  

The SRTIs are supposed to ease the bureaucratic benefits claim processes for people who have been given a terminal medical diagnosis and are “likely to die within 6 months”. But—as anyone with experience of terminal illness knows—medical professionals can never offer much certainty about the time that may be left to someone dying from a terminal disease, nor how quickly their prognosis or quality of life might deteriorate. 

Chair's comments

Rt Hon Frank Field, Chair of the Committee, said:

“When we now seem to hear weekly of people dying before they can get through the rigours of a disability claim to help them live better, it is beyond shameful that Government has allowed this situation to persist for so long for people who know they are dying. Fighting this Department and its broken, impersonal systems is no way for any human being – and their loved ones - to spend their last precious months on this earth. The small change DWP has finally made is welcome, but it’s no substitute for actually changing the law that is causing so much unnecessary distress. The Department recently told us it is listening to the Committee, and changing its approach. Will it now listen to people coping with the worst news this life can bring? And help to ease the ending of a human life – not make it even harder.”

Media reports earlier this year described the repeated “boilerplate” responses DWP has been issuing to the Committee and Chair Frank Field, in response to this work,  aimed at making the rules more humane and responsive to the personal and medical realities of a terminal diagnosis. The latest action from the Department takes a slightly more “helpful” tone, and indicates some change in the language of the guidance to medical professionals on issuing the necessary exemption from assessments for benefits the Committee has previously characterised as “gruelling” and “error-ridden”.
But the Committee’s concerns remain that DWP is working on advice and information that is years out of date. Both medical treatments and the whole system and levels of disability benefits have changed significantly since the consultation in 2010 that Government is justifying the rules on, and there have been a series of distressing recent media reports of people dying before they complete the “normal” assessment  process, with its lengthy and arduous reconsideration and appeals stages.  The Committee has now written again to the new Minister for Disabled People, Work and Health presenting some new case studies from NAWRA, the welfare advisors association, which describes the human cost of the uncertainty and ambiguity of the SRTIs, and the frustrating, unclear processes both dying patients and clinicians are forced to go through in the painful and uncertain last months of a human life that is ending.

Case Studies

A NAWRA member describes how the existing rules affect people receiving “palliative” care. These are people with a terminal illness which cannot be “treated”: palliative care measures instead aim to ease the increasing, progressive pain of dying. They can also include things like radiotherapy given to cancer patients to slow their bones breaking from cancer metastases as well as, for example, long, heavy doses of opioids. In the case of a cancer patient diagnosed with “end stage”, terminal cancer, this can be years away from their actual death:

I have multiple examples of clients having to claim PIP under 'normal rules' when they are palliative and have a very limited prognosis but a clinician won't do a DS1500 (but invariably ends up doing one part way through the claims process) so rather than... (full letter attached)

The NAWRA letter, attached, continues:

There are many reasons I feel for this reluctance to issue a DS1500 from a fear that they will be held accountable if the client lives for longer than 6 months to a lack of understanding of how the DWP looks at DS1500s and sadly a rigid approach to the 6 month rule combined with no understanding of the impact of going through a normal rules claim as opposed to a SR claim.

The Minister’s response, also attached, describes a parallel, unelated process, in the “normal” claims for benefits in the cases where people live with “the most severe and lifelong condition”. It states that:

People with a terminal illness who are expected to live significantly longer than six months are able to claim benefits in the usual way. However, we are clear that all... (full letter attached)

The Committee is publishing this correspondence today as part of continued efforts to rectify problems with benefits claims “ in the usual way”, in this case for dying people. NAWRA continues:

Coincidentally I did a talk about my role to a large GP practice in Wiltshire today and discussed DS1500s and showed them the Committee's recommendation and government response as detailed below-

We recommend the Department adopt the approach taken in the Social Security Act (Scotland) 2018 in determining who can use the SRTI. This would permit claimants to use 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"

-but the government rejected this, saying it expects clinicians to take a flexible approach.

This prompted an interesting discussion and it was clear that most of the GPs have a lack of understanding of the appropriateness of issuing a DS1500 and I think the government saying it expects clinicians to take a flexible approach is a non starter.

Further information

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