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Thousands of terminally ill patients risk being denied benefits, says RCGP

Thousands of terminally ill patients risk being denied benefits, thanks to a Government rule that says people can only claim if they have six months or less to live, the RCGP has said.

The college's end-of-life lead is calling on the Government to review its rules around fast-tracking welfare support such as Personal Independence Payments and Universal Credit for people suffering from terminal illness.

Under the current rules, doctors must declare that a person has less than six months to live before welfare support is fast-tracked.

However, RCGP's Marie Curie end-of-life lead Dr Catherine Millington-Sanders has said GPs and other doctors are unable to make such declarations, especially with advances in medical treatment.

To qualify for 'Special Rules', where welfare support such as Personal Independence Payments and Universal Credit is fast-tracked and paid at the highest rate, patients must meet the Government definition of terminal illness as a 'progressive disease or health condition which means the person is not expected to live for more than six months.'

Doctors are required to sign a DS1500 form that states the patient's life expectancy is under six months, but have argued it's impossible to have ‘clinical certainty' over prognoses.

Marie Curie and the Motor Neurone Disease Association are calling on the Government to reform this criteria.

The charities are due to present their 15,000-signature 'Scrap six months' petition to Downing Street next month. Last year, the MND's survey of 1,001 GPs across the UK revealed that 51% of the GPs who took part said they would support this change.

Dr Millington-Sanders told Pulse: ‘In this era of advancing treatments in medicine, it’s more difficult to be able to tell a patient exactly when they are going to die.

‘However, we can be certain from a clinical perspective what the diagnosis is, how this impacts their life, and if they will benefit from support.

‘Having vulnerable and seriously ill people going in for work assessments is completely against the ethos that we GPs are there to support them through their terminal illness.

‘It’s frustrating from a GP’s perspective when we have to write in and say that we clinically disagree with a decision. The amount of time we can spend trying to get hold of people and then having to appeal not only adds to our already intense workload, but also prevents us from spending more time with patients who need us the most.

‘As a GP, you're left with a feeling of upset, when for some people, this system doesn’t work and seems inequitable. There’s clearly a need for change.’

Scott Sinclair, head of policy and public affairs at Marie Curie, told Pulse: ‘GPs face pressure to talk about "six months" with their patients who are terminally ill, but we’re hearing that they don’t feel confident doing so. 

‘As well as it lacking a clinical basis, we're concerned that being asked to predict how long a patient has left to live can damage the doctor-patient relationship, and makes GPs fear for the consequences on these patients.

‘We feel the situation would improve via a joined-up Government approach across the benefits system, with a team focusing solely on end-of-life care and bereavement support for families.’

Policy manager at the Motor Neurone Disease Association Alex Massey said : ‘We encourage GPs to support applications under the Special Rules for Terminal Illness, as it's far more appropriate than the standard process for people living with MND.

‘We recognise this can be a difficult conversation needing to be handled sensitively. Awareness is vital, so GPs understand the challenges faced by terminally ill patients when claiming benefits and are able to support them effectively.'

Readers' comments (2)

  • Neil Bhatia

    But I do a DS1500 anyway. It doesn't affect the benefits that they are entitled to, or ultimately receive, simply how quickly their application is processed.

    "You will not face any negative consequences from the factual information you supply, for example if your patient lives longer than 6 months."

    "Determining life expectancy in these circumstances is not an exact science. The form asks for factual information and does not require you to give a prognosis."


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  • David Banner

    Neil Bhatia is bang on.

    If the “6 month” rule is lifted there will be a rush of speculative DS1500 requests which (apart from a huge increase in our paperwork) will have a sudden massive financial impact on the already inadequate benefits system.

    People are told to request DS1500 precisely because they are terminal. They already know this. There is more of an issue with non-terminal patients making an inappropriate request, which I happily decline with a breezy “That’s for when you’re dying, and I’m glad to say you ain’t dying yet!”

    And if someone is palliative we should be happy to complete a DS1500 even if we think they may have more than 6 months left, because none of us have a crystal ball. These patients can pass within weeks if (for example) they develop pneumonia (especially for extremely unpredictable conditions like MND).

    The slightly trickier ones are cancer patients undergoing potentially curative treatment who may be struggling financially. If they request a DS1500 I explain that it is designed for patients with less than 6 months to go, reassure them it probably doesn’t apply to them, but fill it in any way on the grounds that cancer therapy is notoriously unpredictable, without stating definitively on the form that I expect them to die soon, and leave interpretation to the department dealing with DS1500........nobody has ever been turned down.

    We need a sensible compromise and the current system (whilst not perfect) gets it just about right. I know some people find the decisions uncomfortable, but GPs pride themselves on making these tough calls, it would be a disappointing dereliction of duty if we duck this one.

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