Six month guideline for terminally ill patients deemed 'not fit for purpose'
A Parliamentary inquiry has deemed the rule that patients must have six months or less to live to get fast access to benefits 'not fit for purpose'.
The report, released today by the All-Party Parliamentary Group (APPG) for Terminal Illness, criticised the guidelines as 'outdated, arbitrary and not based on clinical reality'.
A third of GPs have never signed a DS1500 form - which authorises fast-tracked benefits - for a condition other than cancer, with many incorrectly believing that the system only applies to cancer patients and that they might be held accountable if the patient lives longer than six months.
RCGP’s Marie Curie end-of-life lead Dr Catherine Millington-Sanders told Pulse: ‘It's saddening but not a surprise that non-cancer patients miss out on a DS1500. We know it's more difficult to predict disease trajectory and how long someone will live with conditions such as dementia, frailty and organ failure.
‘The arbitrary six-month time limit is unhelpful and the DWP hasn’t made it clear that the 'Special Rules' apply to non-cancer patients, too.
‘The current legal definition of 'terminal illness' is not in keeping with the definition of ‘end of life’ and lacks any clinical relevance. It forces doctors to make impossible predictions, rather than simply identifying patients who are dying and who could be in need of support, which is what they want to be able to do.
‘I can think of a handful of patients that were rejected for fast-track, but clinically needed to be fast-tracked, which was incredibly distressing for the patients and their families. It can also impact the patient-doctor relationship.'
She added: ‘As clinicians, we know our patients best, so it's upsetting and time-consuming having to deal with a benefits system that challenges or overturns your clinical judgements, when there is compelling evidence to support patients’ fast-track access to benefits.’
The inquiry also revealed that the current definition of ‘terminal illness’, which determines eligibility for fast-tracked benefits, was introduced by politicians 29 years ago, without clinical evidence. Madeleine Moon MP previously introduced the Access to Welfare (Terminal Illness Definition) Bill to change this.
Additionally, it criticised the Department of Work and Pensions (DWP) for its 'overly time-consuming, demeaning and insensitive' processes.
A DWP spokesperson said: ‘Terminal illness is devastating and our priority is dealing with people’s claims quickly and compassionately.
‘That’s why terminally ill people can get their claims fast-tracked and access benefits without a face-to-face assessment. We’re looking at how we can improve our processes and in the meantime we continue to work with charities to help terminally ill people access the support they need.’
The APPG has recommended:
- Amending the definition of terminal illness in UK law so that a person is regarded as having a terminal illness if it is the clinical judgment of a registered medical practitioner that they have a progressive disease that can reasonably be expected to cause the individual’s death
- Adopting a light-touch review of benefit awards under the 'Special Rules' for Terminal Illness only after 10 years, with the DWP only contacting the claimant’s GP to confirm that their diagnosis and prognosis remains the same
- Ending the practice of non-specialist DWP assessors challenging and rejecting the medical evidence provided by clinicians in a DS1500 form to support a benefit claim under the ’Special Rules'
Chair of the APPG for Terminal Illness Drew Hendry MP said: ‘The current rules seriously restrict access to vital financial support for many terminally ill people, whose condition will never improve and only deteriorate until they die, but who may live for longer than six months.’
Last month, the RCGP urged the Government to review the rules around fast-tracking welfare support, while Marie Curie and the Motor Neurone Disease Association's 'Scrap six months' petition reached almost 16,000 signatures.
Mark Jackson, policy manager at Marie Curie, said to Pulse: ‘The DWP doesn’t make it clear enough, in its guidance to clinicians or on the DS1500 form itself, that it expects them to be 'flexible' in how they interpret the law or that it’s asking them only for a ‘reasonable expectation’ a patient might die within six month. This had led to many clinicians interpreting the law as a hard-and-fast 'six-month rule'.
‘Recently, the Government quietly published new guidance for clinicians filling out a DS1500 form for patients with a terminal illness.
‘The new guidance makes clear there won’t be any negative consequences for clinicians if their patients do live longer than six months.
‘However, for as long as the six-month definition remains on the statute books, we know there will be people either denied access to benefits when they need it or who have to face long delays and invasive assessments.’