Rejected when dying

It is an overwhelming and frightening experience to be diagnosed with a terminal condition. This emotionally devastating time is further complicated by the fear of how bills and care will be paid for, not to mention how your family will be supported when you are no longer able to work.

I have been there. When my husband was diagnosed with a form of motor neurone disease (MND), life changed forever.

The loss of earnings, having to reluctantly give up work, and the cost of altering the home to accommodate medical equipment can be financially crippling. Our welfare state was designed precisely for these situations: to support the most vulnerable when they need it most.

Access to benefits needs to be quick and reliable. Unfortunately, I have uncovered far too many cases where terminally ill people have been left to navigate their way through a convoluted benefits system and battle appeals after their claim has been wrongly rejected.

No one with a terminal condition should have to endure the cumbersome standard application process to access benefits. Instead, their claim should be fast tracked via the special rules for terminal illness (SRTI) process. These rules were written to enable people who are dying to avoid filling in lengthy forms and humiliating face-to-face assessments. For those applying for universal credit, the SRTI process also exempts them from the ludicrous idea of discussing their work aspirations with a work coach. Why should anyone, with only a matter of months left to live, face such indignity?

While SRTI is a simpler route, the current system is ridden with failure for many terminally ill people. To be eligible for SRTI you need a DS1500 form by a doctor, consultant or specialist nurse. The key issue is that they will only provide one if you have a “reasonable expectation” of death within six months.

Research consistently shows that clinicians do not agree that the six months definition is an effective rule to determine whether a patient is terminally ill. The MND Association commissioned an independent poll of 1,001 GPs which found that only 5 per cent of GPs said that it is always clear when to sign a DS1500 for their patients. Furthermore, only 3 per cent of neurologists were ‘very confident’ predicting a life-expectancy of six months for people with MND.

Predicting someone’s life expectancy is virtually impossible and the government agree with us on this. As a result, many GPs do not issue DS1500s for genuinely terminal conditions as they cannot accurately tell whether their patient will die within six months.

In one case, a man diagnosed with MND received zero points in his universal credit assessment – meaning he was entitled to nothing. He was told to seek work despite struggling to walk, breath and talk. Shockingly, his GP said he could only provide a DS1500 to people with cancer. Sadly this is an all too common belief which has caused a discrepancy and inequity of access to SRTI. Polling has found that 31 per cent of GPs have never signed a DS1500 for a non-cancer patient, whereas 93 per cent have signed a DS1500 for a cancer patient.

Many terminally ill people who could and should be using the SRTI process, do not access it because of fears surrounding the required six months prognosis. Instead they have applied under the lengthy and complex normal application procedure.

Between April 2013 and October 2018, 5,670 terminally ill people applied for personal independence payment (PIP) under the normal rules and had their claim rejected – they only then applied under SRTI. Imagine how you would feel if you or someone you love is dying, then has their claim rejected rather than immediately fast-tracked.

People with a short time left to live must receive financial support quickly and compassionately. Their difficult circumstances must be recognised.

I have introduced a bill to remove the six months rule and instead allow healthcare professionals to use their clinical judgement to determine whether someone is terminally ill.  The bill is scheduled for its second reading later today, and will ensure that all terminally ill people can access support without having to go through a slow and complex application route. Claims will be fast tracked to the highest rate and any problems that may arise through the standard assessment process will be avoided.

These changes are being adopted in Scotland having received unanimous cross-party support and significant backing from the medical community. Sadly, the UK government remain reluctant to implement these progressive changes to help the dying. This is unacceptable.