Terminally ill people should be treated with compassion and dignity
4 min read
The clinical judgement of a registered medical practitioner, rather than the six month time limit, should define what is considered a "terminal illness", says Madeleine Moon MP.
Earlier this year I met James Douglas who was diagnosed with motor neurone disease just before his 30th Birthday. He had recently moved into a new home with his partner and one-week year old son… he was then told he may not live to see his 32nd birthday.
Despite this, he went through the arduous process of claiming Personal Independence Payment (PIP) yet was awarded zero points on every category of his PIP claim form.
This is not an isolated case, as MP’s we have all met constituents with MND and other terminal conditions who have had to endure the stressful process of applying for PIP and the devastation of rejection.
No one with a terminal condition should have to suffer the additional anxiety of worrying that their family may lose their home, be unable to pay bills and face the indignity of filling in a lengthy form, attending a face-to-face assessment or appealing clearly mistaken decisions.
Weeks after his PIP application was rejected, James was given a DS1500 by his consultant. This meant that there was a reasonable expectation that he would die in six months or less. A DS1500 is required for a terminally ill person to apply for the Special Rules for Terminal Illness (SRTI) provision. This enables claimants to access disability benefits quickly, by fast-tracking applications to the highest level of benefits payments without having to go through degrading assessments.
I am introducing a Bill to create a much fairer and compassionate system for terminally ill people. My Bill will remove the six month time limit set on how long a patient has left to live before their condition is considered as "terminal". Instead, the clinical judgement of a registered medical practitioner will determine whether a person is terminally ill. These changes are also due to be made in Scotland after an amendment to the Social Security (Scotland) Bill received cross-party support.
I have been working with third sector organisations, such as the Motor Neurone Disease Association and Marie Curie, to produce this simple Bill. I have support from the medical and academic community who I hope will help to draft guidance on what is considered a terminal illness. Crucially, this will not be fixed to an arbitrary time limit.
The six months definition of terminal illness is too restrictive and limits access to the SRTI process. Data from the DWP shows that, as of April 2018, there were 1,565 PIP cases of people living with MND, however, only 650 or around 42% of them had claimed via Special Rules.
The current six month definition of terminal illness is problematic for unpredictable conditions. A third of people with MND die within a year of diagnosis and half will die within two years. Identifying those who are likely to die quickly and those who will live longer is very difficult, if not impossible. Allowing medical professionals to determine whether an illness is terminal would give terminally ill people the chance to access the benefits they need quickly and in a dignified way.
Our current assessment process is capability driven. People are asked questions such as how far can they walk, can they make a cup of tea, and can they put their socks on. The change I am advocating for is to provide terminally ill people with access to benefits which is driven by a clinical diagnosis.
My proposal is modest but it has the potential to help so many. This Bill will create parity with Scotland, generate consistency across the UK, and reflect society’s recognition that our benefits system should support, not challenge or interrogate the terminally ill.
After being diagnosed with a terminal condition, the precious time you have left must be spent in love, laughter and taking the painful journey together with dignity and compassion.
Madeleine Moon is the Labour MP for Bridgend and Chair of the All-Party Parliamentary Group on Motor Neurone Disease
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