A look at when the special rules apply and some myths and confusion around the criteria.
In Part 1 of this blog, we looked at which benefits are affected by “special rules” the practicalities of claiming and the amounts someone might get. We also looked at ways in which most of these befits respect people’s choices not to know full details of their medical conditions or potential outcomes
Here in Part 2, we look at when the special rules apply.
If you are affected by cancer and prefer not to get into questions of potential prognosis, you may wish to stop reading this blog and to just focus on the practicalities of claiming – covered in Part 1 - after a DS1500 has been issued.
Special rules are not confined to people with cancer by any means. They can potentially cover any advanced, life-limiting condition. But there isn’t an exact answer to when do they apply, because it can be a bit of a grey area.
The current rules have been workable in practise, but there is both confusion and controversy, with lively discussions in the UK Parliament – partly sparked by UC practices – and changes ahead in Scotland.
The "six months" myth
There is a common myth that the reference to six months within the “special rules” means that these rules only apply if someone is very likely to have less than six months left to live.
The reference to six months is to be dropped under the new Disability Assistance in Scotland and the All Party Parliamentary Group on Terminal Illness and the Work and Pensions Select Committee have recommended that it be dropped across the UK
However, for now it remains, but it does not mean what some older descriptions by the Department for Work and Pensions (DWP) imply. For example, until recently the notes to clinicians that accompanied pads of DS1500 certificates, said:
“In social security law, someone is terminally ill if:
- they are suffering from a progressive disease
- and as a consequence of that disease are not expected to live more than 6 months
Contrast that with a more up to date description in the April 2019 guidance, welcomed by the Work and Pension Select Committee. In their separate booklet - DWP Medical (Factual) Reports - a Guide to Completion, the DWP say:
“The purpose of the DS1500 is to tell DWP about a patient who meets the special rules criteria. It is not used to make a claim for benefit. You should complete the form promptly if you believe that your patient meets the special rules criteria, namely:
- they have a progressive disease and, as a consequence of that disease
- you would not be surprised if your patient were to die within 6 months”
The key difference, then, is that the older description sounds much more authoritative and suggests the special rules only apply when death within six months is very likely. The second - more recent and correct description - suggests that a DS1500 could be issued if it "would not be a surprise" if someone turned out to have less than 6 months, even if at the same time there were realistic hopes of a much longer time of quality life ahead.
Think then less of the "six months” and more of the "three years" for which most special rules awards are made; and after which - with a fresh DS1500 - a further award could be made.
The problem for some clinicians – as explained by a consultant giving evidence to the All Party Parliamentary Working Group on Terminal Illness - is that the old notes to the DS1500 have been more readily available for some time. They have also been the basis of many descriptions of special rules in medical circles, and even some advice ones. The mention of "in social security law" can leave clinicians feeling that they are giving a definitive, legal statement/ prognosis and could be in trouble if someone turned out to live longer than six months.
They may not be aware of - nor have time to look for - the more up to date and correct guidance of the criteria, which comes with re-assurances about prognoses and their legal position (see below)
Fortunately, the Guidance notes on DS1500 pads have now been updated to describe the criteria in exactly the same way as in the separate Guidance booklet, although it may take some time for clinicians to become aware that it has changed or the implications
What does the law actually say?
The law does not require a prognosis. Case law - mainly in a case referenced as R(DLA)1/94 - has established that for special rules to apply:
- there does not need to be a prognosis of under 6 months, nor even any prognosis at all
- it is always a future test : would the criteria be met looking ahead. It does not matter if someone has been on special rules for the previous 6 months or even longer
- and that it is not based on death occurring within 6 months, just that death could be reasonably expected – i.e. it would not be a surprise if it did.
In practise, an accurate prognosis might be very difficult anyway:
- sometimes a cancer has indeed reached a very advanced and “end of life” stage, leaving no doubts that “special rules” apply .
- but often the response to any question about time remaining could be more along the lines of a range of possible outcomes: e.g. it could quite possibly be less than six months, but it could also be a good deal longer than that
There can be so many variables in even beginning to reach a prognosis in any individual case: e.g. as yet unknown responses to palliative treatments planned, how aggressive a cancer is or becomes, how someone’s immune system responds and someone's current state of health. In clinical terms, a prognosis might not even be attempted or if it is, it might be put as a rather wide range.
The revised guidance notes on DS1500 pads also recognise the difficulty in prognoses. They further clarify that no prognosis is asked for and that there are no repercussions if someone lives longer than expected or feared.
"Your patient's prognosis
Determining prognosis in these circumstances is not an exact science This form asks for factual information and does not require you to give a prognosis. Use language that you would normally use when communicationg with other clinicians.
You will not face any negative consequences from the factual information you supply, for example if your patient lives longer than six months"
If someone does live far longer than six months, that does not make the award - or the DS1500 that led to that award - incorrect. Providing that it was possible when the DS1500 was issued that one outcome could have been death within six months, both the DS1500 and the DWP's three year award of benefit remain entirely correct.
So, together with the revised description of the criteria above, the DWP now suggest a wider view of the criteria - more in line with the actual law - keeping with what the law - within the notes that come with pads of DS1500s . They also tackle some of the concerns that may have led some clinicians to be too cautious in issuing a DS1500 in the past.
However, it may take a while for people to note that the guidance notes have changed and for this to become that to the common day to day understanding for all clinicians. Similarly there may be a delay in updating descriptions in other medical and advice circles that may based on the old DWP guidance.
One suggestion made by one of my Benefits Advisor colleagues is to attach a copy of the guidance notes with highlights - when requesting DS1500s from more cautious clinicians. You can see those notes and print them off if helpful , by clicking on the attachment, top right.
The practical impact of a wider scope
The practical implications of a wider and more realistic approach to terminal illness is that:
- DS1500s do not ask for a prognosis or opinion at all. DS1500s simply a factual report re: the diagnosis of the cancer and current treatments and care. So an indication of an advanced cancer and that treatment / care is palliative, would support an award under special rules.
- if there is any doubt, a clinician at DWP may seek clarification. This happens rarely and there is no comeback on the person issuing the DS1500, if it should turn out that they had done so in error and outside the scope of “special rules”
- awards for disability benefits are made for three years at a time not six months. At the end of that time, an award could be renewed with a fresh DS1500 and some people come off the special rules - neither means that the first award was incorrect.
- Employment and Support Allowance (ESA) used to ask for a new DS1500 annually, but now tend to follow disability benefits lead.
- Universal Credit (UC) is struggling with special rules and “sickness” generally. They will tend to want a new DS1500 every 6 months, while sometimes UC asks for their own DS1500, rather than working from one already submitted for a "disability benefit" claim. Advisors are working on UC to help them catch up with ESA good practise.
- If someone lives well beyond six months - even perhaps beyond the end of their three year award - that does not make their previous award wrong. The issue, when that award was first made - and again at a renewal three years later - is one of whether, looking ahead, it would not be a surprise if someone did not live more than six months. There is then no question of any repayment by the claimant nor comeback on the clinician if they should live beyond the six months or even beyond their three year award. If the DS1500 criteria still apply looking ahead - and with a new DS1500 issued - the fact that someone has survived the last three years is no barrier to a fresh award for the next three years..
This means that people with cancer need not think that they can only claim under special rules if they have a definite prognosis of under six months. And clinicians do not need to wait until death within six months is either a definite prognosis or the most likely outcome, before issuing a DS1500. They can issue a DS1500 when death within six months would not be an unexpected outcome, when at the same time there may be other possible, realistic and more optimistic outcomes.
In Scotland, a new Disability Assistance will replace the current three “disability benefits”. The new rules are not yet finalised, but the principles have been set out : that there will be no reference to any specific time, that it will be a matter of clinical judgement and guidance will be produced by the Chief medical Officer, working with stakeholders with expertise in this area.
However, the "sickness benefits" remain UK wide, so that means that the current definition will still apply to "sickness" benefits in Scotland; and both sickness and disability benefits in the rest of the UK.
However, the current rules, may well have changed by then, as MPs are recommending change along the lines of the Scottish model and the DWP has been asked to look at the current rules again. For now, the Work and Pensions Select Committee have welcomed the wider guidance, but see that as not being enough.
In Special Rules (1): The difference they make , we saw that:
- Special rules make things easier by speeding up and simplifying the application process, avoiding assessments of the day to day effects of cancer and in ensuring that top rates are paid.
- They apply to both “sickness benefits” that provide a basic income when not earning in “working age” and to “disability benefits” which offer extra amounts to people of all ages to help with some of the extra costs of daily living, personal care and getting around out doors that illness or disability can bring
- There are processes for claims to be made on someone’s behalf
Here in Part 2, we saw how:
- the issue as to who qualifies is complicated by too narrow interpretations that fed a myth that the special rules only apply to those with less than six months to live.
- the correct description is merely that it would not be unexpected - i.e. it would not be a surprise - if someone were to die within six months, even if at the same time there were realistic hopes of a much longer period of good quality life ahead.
- e.g. most special rules awards are made for 3 years at a time and could then be renewed – with a fresh DS1500 – if looking ahead, the criteria still applied
- The six-month rule will be dropped for Scottish disability benefits in favour of leaving this to clinicians’ professional judgement and is under review.
You would be very welcome to drop in at any Maggie’s centre or to get in touch online for both help with these benefits and for general support when dealing with advanced cancers
Useful links and further reading:
- Part 1 of this blog - Special rules (1) The differences they make . This also contains links to further information about the benefits mentioned in that blog.
- DWP Medical (Factual) Reports - a Guide to Completion: In particular see page 12
- Social Security Terminal Illness for a summary of principles for a new definition of special rules for the new Disability Assistance in Scotland
- The page of the revised Guidance notes that come with DS1500 pads - click on the attachment
- Members of the online community can share general queries, thoughts and experiences in the linked Conversation here