Universal Credit: Terminally Ill People

Jim Shannon Excerpts

Wednesday 29th November 2017 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving me permission to intervene on him and for bringing this matter to the House for our consideration. Does he agree that, just as disability living allowance had special rules for the terminally ill, universal credit must have compassionate grounds so that it can be adapted to an individual’s circumstances? Each person has circumstances that are specific to themselves.

[Drew Hendry]

I thank the hon. Gentleman for making that point, and I will underline it later in my speech.

I held a universal credit summit in my constituency, specifically to challenge the accusations of scaremongering that were coming from the Government Benches. I invited every Tory MP, along with Ministers and indeed the Prime Minister, to come to Inverness to hear testimony from agencies and claimants about the problems of universal credit. Had they attended, they would have heard from Elaine Donnelly, the caseworker at the highland Macmillan-Citizens Advice partnership. She has been dealing with the universal credit cases of cancer patients and the terminally ill. She describes herself as “battle-weary” and “numb” as a result of the number and type of claims that are coming forward and the fact that people are dying before their claims are processed. She told us about a claimant who was dying of cancer not knowing the outcome of her claim and being without any support for six weeks. I welcome the timely reduction of the waiting period to 5 weeks, by the way. It took her three months to get her payment, and when it came through it was wrong. A £500 deduction had been made for another benefit that had never been claimed or received.

Other claimants have included Lucy, a 22-year-old who had missed the deadline, which meant that her PIP and her mobility component were stopped. Her blue badge was lost and her mum’s carer’s allowance was taken away. It was hard work to sort that out. In another case, Jo-Ann’s dad was told in April 2016 that there was nothing more the doctors could do, and he was moved from DLA to PIP that summer. He received two points—eight points are needed for the standard rate and 12 for the enhanced rate. The rules on terminal illness suggested that if the probability was that dying could be expected within six months, the claimant could apply under the special rules. However, the prognosis was unknown. The doctors were saying that it could be a month or a year, and it was unclear whether those rules would be an option, as the doctors could not reasonably say whether death would be likely within six months. Let us just imagine that discussion.

Jo-Ann’s dad and the family had not come to terms with the prognosis, so they could not claim under the special rules. The process was incredibly difficult and caused a lot of stress. As the special rules option was not available, the application had to be followed in the usual way and PIP was not awarded. The mobility car was taken away, leaving Jo-Ann’s dad unable to attend medical appointments or get shopping, due to their rural location, which had no bus services.

Jo-Ann also sat in with her dad, John, at the face-to-face assessment. She described the experience as “awful”, saying:

“They pushed and pushed my dad until he gave them the answer they wanted.”

When he was asked if he could walk 50 yards, he said no, so he was then asked if he could do it even if it took a long time. When he again said no, he was asked if he could do it if there was an emergency and he absolutely had to walk 50 yards. At that point, he felt so pressurised that he said yes. The overview of the assessment then said that he could “reasonably” walk 50 yards. The assessment process is deeply humiliating and degrading, putting claimants in a position where they often feel bad about not being able to carry out certain tasks and even about asking for extra assistance in the form of benefits.

I hope that no one here or watching the debate ever faces a diagnosis of cancer, motor neurone disease or any other terminal illness, yet that happens to people every day. It must be absolutely shattering not only for those who are diagnosed, but for their families. I imagine that the last thing on their minds would be going through the hoops to get the basic financial support that they need, yet that is what universal credit means in its current form.

I mentioned the Motor Neurone Disease Association, which states that MND is a devastating fatal disease that rapidly progresses through the brain and central nervous system, leaving people trapped in a failing body and unable to move, walk, talk, swallow or, eventually, breathe. It kills one third of people within the first year and more than half within two years. A small number survive longer. People with MND and other terminal illnesses and their families face significant financial burdens, with an estimated extra cost of £12,000 a year.

Universal credit needs to work smoothly for the terminally ill, but it does not, and there is nothing like it for causing stress. People do not need and should not suffer delays or stress, and a financial burden is the last thing that they should be asked to face. Universal credit should be easy, but not everyone can use the online portal. Many are simply unable to type. Completing an online application has been described by those who assist the terminally ill as

“extremely arduous and time consuming, often requiring outside help”,

yet help is available only over the telephone, which is clearly inappropriate for anyone who is unable to speak.

The severe disability premium has been abolished under universal credit, costing disabled adults with no carer £62.45 a week or £3,250 a year. The enhanced disability premium was also abolished, costing disabled adults under the pension age £15.90 a week. The Department for Work and Pensions’ stipulation that terminally ill claimants can apply only via special rules if death can be reasonably expected within six months does not work for many people with terminal illnesses. Health professionals are often confused by that condition and about whether they should sign the relevant form, which is known as a DS1500, meaning that people often do not get the swift support that they badly need. Whether people apply under the special rules or not, there is no customer journey specific to claimants with disabilities or vulnerabilities, especially the terminally ill. Those with severe and progressive conditions, including terminal illnesses, are all given work-focused interviews, which is clearly insensitive. As I mentioned earlier, some people do not want their doctor to tell them that they are dying, and it is cruel to ask them to self-certify their fate—cruel and unnecessary.

In conclusion, I have some simple low-cost or no-cost requests of the Minister that he can agree to given the relatively low number of terminally ill claimants: remove the waiting time, which should not be there, for terminally ill people; make the application simpler, which should be easy for this limited number of people; provide direct support or give implicit consent for agencies to apply on a claimant’s behalf; reinstate the severe disability allowance and the enhanced disability premium for terminally ill people; provide a specific journey and special rules for the terminally ill; allow the DS1500 to be submitted by third parties without explicit consent; and, easiest of all, get rid of the cruel requirement for self-certification.