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House of Commons Hansard
Access to Welfare (Terminal Illness Definition)
18 July 2018
Volume 645

Motion for leave to bring in a Bill (Standing Order No. 23)

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I beg to move,

That leave be given to bring in a Bill to amend the definition of terminal illness in the Welfare Reform Act 2012; and for connected purposes.

I declare an interest as the chair of the all-party parliamentary group on motor neurone disease. My husband, my brother-in-law and my mother-in-law all died from motor neurone disease.

Today I am placing an emphasis on motor neurone disease, but there are other conditions that equally apply, and those conditions will be explored on Second Reading. The current definition of “terminally ill” is:

“the person suffers from a progressive disease and the person’s death in consequence of that disease can reasonably be expected within 6 months”.

A prognosis of six months or less to live is needed for a clinician to issue a DS1500, which allows claimants to apply for benefits under the special rules for terminal illness. The special rules enable access to disability benefits quickly by fast-tracking applications to the highest level of benefits payments, which is an issue of paramount importance for people with limited time to live. Some 3,618,000 people claim the personal independence payment, with only 3%, or 109,000, claiming under the special rules process.

My Bill recognises that the six-month eligibility criteria to access the DS1500 are far too restrictive. Department for Work and Pensions figures show that, as of April 2018, there were 1,565 PIP claims from people with motor neurone disease, and only 650, or around 42% of them, had claimed via the special rules.

As parliamentarians, we have all met terminally ill people who have failed to access benefits via the standard process: people under immense emotional and physical stress; people coming to terms with their terminal illness diagnosis; people having to navigate their way through the burdensome and time-consuming benefits process, facing distress, anxiety and fear, which will increase with the roll-out of universal credit. A person who does not qualify under the six-month special rules faces the prospect of having to attend an interview with a work coach to discuss their aspirations for work, and having to sign up to a claimant commitment, which is highly inappropriate for an individual who will never return to work.

Our current assessment process is capability driven: “Can you walk? Make a cup of tea? Put your socks on?” This results in high scores for those with physically identifiable limitations such as a spinal injury, but it does not recognise an unpredictable, progressive, degenerative condition for which no treatment is available to mitigate the progression of the disease. The change I propose will, only for the terminally ill, provide access to benefits driven by a clinical diagnosis.

The current six-month definition of terminal illness is problematic for unpredictable conditions such as MND. 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—indeed, it is 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 with dignity.

Earlier this year, the all-party group took evidence from James Douglas, who was diagnosed with MND just before his 30th birthday. He had recently moved into a new home with his partner and very young son, but he was then told he would not see his 32nd birthday. James was struggling at work and was forced to reduce his hours, and the financial implications for his family were crushing. He went through the arduous process of claiming PIP and was awarded zero points in every category of his claim—weeks later he was given a DS1500 by his consultant.

Martin Burnell also has MND. He described to MPs how he received zero points in his universal credit assessment and was told to seek work, despite struggling to walk, breathe and talk. A DS1500 came from his consultant, despite his GP telling him it could be accessed only by people with cancer—that is an all too common belief. The Department for Work and Pensions recently wrote to Martin asking whether he wanted to retrain and learn a new skill.

Those are not isolated cases, and far too many people with terminal conditions have had to endure an incredibly stressful time accessing benefits. People with terminal conditions should not suffer the anxiety of completing lengthy details about capability or attend face-to-face assessments when a clinical judgment can show they are terminally ill. The current definition of “terminal illness” has created variation in how it is interpreted and discrepancies in doctors’ willingness to submit a DS1500 for people with terminal conditions. Some interpret the definition broadly, whereas others feel that the current criteria restrict their ability to support special rules applications. The change proposed is modest, but it has the potential to help many. It is shocking that terminally ill people and their doctors have at times been challenged by assessors on whether a claimant has six months to live or not. Astonishingly, 13 out of 21 health care professionals who gave evidence to the all-party group said that assessors had contacted them to question the validity of the DS1500.

This Bill seeks to reflect the changes to the definition of “terminal illness” recently announced in Scotland; there has been agreement on removing the time limit of having a life expectancy of six months or less in order for someone to be considered “terminal”. Instead, the clinical judgment of a registered medical practitioner will determine whether a person is terminally ill. When there are no effective disease-mitigating treatments, and disease is progressing rapidly, death becomes inevitable. Doctors know they cannot certify with accuracy “death within six months”, and such a time statement is cruel to the patient and their family, who are struggling to come to terms with the illness and with dying.

By allowing a clinical judgment to determine whether an individual has a terminal illness, we will create a much fairer and more compassionate system. To support clinicians when determining a terminal diagnosis, the proposals in Scotland allow the chief medical officer, in consultation with registered medical practitioners, to set definitions in regulations. They define when an individual has a diagnosed condition that has no further treatment available and will lead to death. Both the chief medical officer and the chief nursing officer in Scotland have reviewed and fully support the amendment in Scotland as the best way to achieve timely support for those with a terminal illness.

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. The Bill will reflect the recommendations of the independent review of PIP in Northern Ireland, which supported the changes to how terminal illness should be defined. There is support for this from the medical community; 30 leading neurologists have called on the Government to emulate the changes in Scotland. Dr Nik Sharma, a consultant neurologist at the National Hospital for Neurology and Neurosurgery, told the all-party group that despite his years as a specialist treating people with MND, he cannot predict its progression or the life expectancy of people with the disease. Other specialists have told me that it is difficult to predict when someone has six months left to live with cancer, and it is close to impossible with unpredictable conditions such as heart disease and chronic obstructive pulmonary disease.

We have consulted widely. I have worked closely with the Motor Neurone Disease Association, Marie Curie and the Royal College of General Practitioners. I have sought the views of the chief medical officer and the chief nursing officer for England. Palliative care specialists have agreed to liaise in helping to produce guidance on a definition ahead of Second Reading. In Scotland, these changes received cross-party support, and we have that same support here.

Before coming into this House, I spent many years helping terminally ill people claim benefits. I cared for my husband Steve, and can attest to the mental and emotional chaos of dealing with a terminal illness. The unknown time you have must not be spent worrying about accessing benefits or keeping a roof over your head; it must be spent in love, laughter, and taking the painful journey together with dignity and compassion. It is time for this Government and this Parliament to support and ease this journey.

Question put and agreed to.


That Mrs Madeleine Moon, Dr Sarah Wollaston, Frank Field, Norman Lamb, Dr Philippa Whitford, Ian Paisley, Mark Tami, Peter Aldous, Stephen Twigg, Chris Evans, Hywel Williams and Lady Hermon present the Bill.

Mrs Madeleine Moon accordingly presented the Bill.

Bill read the First time; to be a read a Second time on Friday 23 November, and to be printed (Bill 253).

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I now have to announce the results of today’s seven deferred Divisions. The first six relate to draft European Union (Definition of Treaties) orders. In respect of the first Question relating to Armenia, the Ayes were 535 and the Noes were 3, so the Ayes have it. In respect of the second Question, relating to Central America, the Ayes were 534 and the Noes were 3, so the Ayes have it. In respect of the third Question relating to Cuba, the Ayes were 534 and the Noes were 3, so the Ayes have it. In respect of the fourth Question relating to Canada, the Ayes were 534 and the Noes were 3, so the Ayes have it. In respect of the fifth Question relating to Australia, the Ayes were 534 and the Noes were 3, so the Ayes have it. In respect of the sixth Question relating to New Zealand, the Ayes were 536 and the Noes were 3, so the Ayes have it. Finally, in respect of the Question relating to Immigration (Provision of Physical Data) the Ayes were 311 and the Noes were 262, so the Ayes have it.

[The Division lists are published at the end of today’s debates.]

Domestic Gas and Electricity (Tariff Cap) Bill (Programme) (NO.3)

Motion made, and Question put forthwith (Standing Order No. 83A(7))

That the following provisions shall apply to the Domestic Gas and Electricity (Tariff Cap) Bill for the purpose of supplementing the Orders of 6 March 2018 (Domestic Gas and Electricity (Tariff Cap) Bill: Programme) and 30 April 2018 (Domestic Gas and Electricity (Tariff Cap) Bill: Programme (No. 2)):

Consideration of Lords Amendment

1. Proceedings on consideration of Lords Amendment shall (so far as not previously concluded) be brought to a conclusion one hour after their commencement at today’s sitting.

Subsequent stages

2. Any further Message from the Lords may be considered forthwith without any Question being put.

3. The proceedings on any further Message from the Lords shall (so far as not previously concluded) be brought to a conclusion one hour after their commencement.—(Claire Perry.)

Question agreed to.