Universal Credit: Terminally Ill People

Drew Hendry Excerpts

Wednesday 29th November 2017 Commons Chamber

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

I have raised many times in this place the subject of universal credit and the problems faced by my constituents and others across the nations of the UK. This debate is about UC and its effect on the terminally ill, and preparing for it has been one of the most humbling experiences of my parliamentary career so far. I pay special tribute to Marie Curie, the highland Macmillan-Citizens Advice partnership and the Motor Neurone Disease Association for their input, and especially to terminally ill claimants who have come forward with stories of the issues they face—stories of delays, difficulties, the deficits they face as disabled people, the complexities and frustrations that confront them, and the humiliations and indignities they have to suffer.

These are actually very simple things for the Government to fix, some of them at little or no cost to them. If the Chancellor is sincere in what he said in the Budget debate about wanting a civilised and tolerant place that cares for the vulnerable, he will take on board the representations I am making on behalf of those agencies and the terminally ill tonight.

[Neil Gray (Airdrie and Shotts) (SNP)]

I congratulate my hon. Friend on securing this debate and commend him on the work he has done over many years in highlighting the problems with UC. He mentioned the Chancellor’s Budget, which was an admission that UC was failing some of the people he mentions. Does he agree that the Chancellor and the Government now need to go further to address the real issues at the heart of UC, such as those he mentions tonight?

[Drew Hendry]

Absolutely. We have all accepted the principle of a simpler benefit and the move to a single payment, but that simplification does not work if it is not simple for the users and instead becomes complex and difficult, which is what has happened.

As my hon. Friend points out, I have been raising issues with UC since 2013 when I was leader of the Highland Council, where we took UC through the pilot and on to live service and finally full service roll-out. During that time we spotted and reported the problems thrown up by UC, but until very recent weeks none of them have been taken on board. As my hon. Friend notes, we have recently seen an admission, however grudging, from the Government that there are problems—that the current system is broken. The Minister has an opportunity tonight to fix some of the areas in which it is broken.

Prior to universal credit being introduced, personal independence payment had a specified line for those who were terminally ill to call. Claimants on PIP who were terminally ill had their payments processed quickly, payments could be made weekly and implicit consent was available, giving supporting organisations the authority to make claims on behalf of terminally ill claimants. Many terminally ill people simply do not want to be told that they are dying, and PIP allowed them some consideration and dignity.

[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.

[The Minister for Employment (Damian Hinds)]

I congratulate the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry) on securing a debate on this important matter. These are, of course, extremely difficult situations, and we in turn must always be careful to treat them with the highest level of sensitivity.

I will begin by setting out the recently announced changes to universal credit, which of course apply to all recipients, before addressing the hon. Gentleman’s specific points. We continue to roll out universal credit gradually, constantly improving the way the system works as we do so. I am sure that hon. and right hon. Members on both sides of the House welcome the changes to universal credit that my right hon. Friend the Secretary of State for Work and Pensions announced in his statement to the House last Thursday.

New guidance will be issued to staff next month to ensure that claimants in the private rented sector who have their housing benefit paid directly to landlords are offered that option when they join universal credit. We will make two changes to advances from January. First, the maximum period over which an advance is recovered will increase from six months to 12 months, making it easier for claimants to manage their finances. That will apply regardless of the level of advance claimed. Secondly, we are increasing the amount of support that a claimant can receive through an advance from up to 50% of their estimated entitlement to up to 100%. Of course, the advance is interest-free.

If someone is in immediate need, we can fast-track the payment so that they receive it on the same day. In practice, new claimants in December can already receive an advance of up to 50% of their estimated overall entitlement, and may receive a second advance in the new year to take it up to 100%. Taken with the first scheduled payment, that means that claimants in need could receive nearly double the amount of cash that they would previously have received over that period.

In addition, from spring next year, we will make it possible to apply for an advance online, further increasing accessibility for those who need it. From February we will remove the seven-day waiting period, reducing the time claimants might wait to receive their first full payment. From April, for new claimants already receiving support towards their housing costs, we will provide an additional payment of two weeks’ housing benefit to support them as they transition to universal credit, which will help to address the issue of rent arrears for those most in need.

It is important that I explain that the personal independence payment is a separate benefit to universal credit. It will continue to be paid weekly in advance to provide important financial support to help people to meet the additional costs of disability in the latter stages of their life. PIP is also not taken into account when assessing entitlement to universal credit. To be clear, PIP is not a benefit that is being replaced by universal credit. PIP and UC are not comparable, as they are not intended for the same thing.

Income-related employment and support allowance and the linked disability premiums, including the severe disability premium, are being replaced by universal credit as part of the process of simplifying benefits to help us address overlaps. To mirror the design of ESA, universal credit has two disability elements for adults. The higher rate is set at a substantially higher level than the equivalent support group level in ESA. By structuring the rates in that way, the Government are making it clear that they are not looking to make savings. Transitional protection will also be provided for those claimants who are transferred across to universal credit by the Department for Work and Pensions and who have not had a change of circumstances.

We will continue to listen to and act on feedback as we roll out universal credit. I regret to say that mistakes can be made in any benefits system and, when errors happen, I am sorry. Of course we recognise that people with health conditions or disabilities face extra challenges. People may be dealing with more than one condition or disability, and the same condition can affect people in different ways.

[Drew Hendry]

Will the Minister take on board some of the specific points that I raised? These things are easy to do and would cost nothing. Specifically, will he address the issues relating to self-certification? I also referred to other things that would be very easy to deliver, so will he consider any of those?

[Damian Hinds]

Perhaps the hon. Gentleman will allow me to continue. As we roll out universal credit, we are absolutely committed to ensuring that terminally ill patients are treated with the utmost sensitivity and care, and receive the support they need to make a UC claim.

It might be helpful if I briefly set out to the House how the claim process works in the pre-existing system—the legacy benefit system. Under that system, additional financial support can be obtained by someone who is terminally ill by making a claim to ESA. This is a manual process that requires an application to be completed via a telephone call or a paper-based form. As part of the process, the claimant is asked whether they would like to apply for ESA under “special rules”, as the hon. Gentleman mentioned. For ESA, “special rules” means someone who has a terminal illness with a prognosis of less than six months. The claimant is asked to provide medical evidence from their GP or medical practitioner confirming this. If the claimant has already provided the medical evidence to another part of the DWP, the Department will confirm that and make a referral to an expedited work capability assessment. That is entirely clerical; it is a review of papers. The healthcare professional will provide a report, usually within 48 hours, confirming the claimant’s prognosis and condition to the DWP, which will then be able to award immediate additional financial support by allocating the claimant to the support group. As the hon. Gentleman mentioned, the UC full service is designed to be accessed and claimed for online, although a claim can be made over the phone or via a home visit, which can be arranged if needed. Universal credit has a similar process in place to support claimants when they have been diagnosed as terminally ill to make sure that additional support is provided as quickly as possible.

I am are aware of the concerns raised by the hon. Gentleman about the process of notifying the DWP about a claimant’s terminal illness. However, we do not need to change the consent rules in UC to support these claimants; we can already accept information directly from claimant representatives, such as claimant appointees and third-party organisations representing the claimant. However, we are also aware that there are instances when this is not happening as intended, and we are working very hard to make sure that the system works properly, with all the necessary guidance and procedures in place to support terminally ill claimants and to help our operational staff to assist them.

As part of the training that our staff receive, they are made aware that claimants might not know their prognosis or condition and that they therefore should not record or refer to the nature or detail of the illness on the full service journal or in discussions, unless requested by the claimant. Our approach is, and always has been, that we must ensure that terminally ill claimants are treated sensitively and with empathy at all times.

When a claim is made to UC where the claimant is terminally ill, we want to ensure that claimants receive any eligible additional financial support as quickly as possible. To make sure that that happens, the claimant is asked if they have a terminal illness. We have already asked that question of ESA claimants, but using the terminology of “special rules”. I must stress that, in effect, the two questions are the same. We changed the wording to make things clearer to the individual, and to make sure that people would be able to get the support to which they are entitled and which they need. That applies to new claims and to existing claims on a change of circumstances.

When somebody presents with such an illness, they are given the option of continuing to provide further information themselves, or of receiving support from the DWP to do so. When they indicate that they would like support, it becomes a high-priority task for a case manager to telephone the claimant to gather the information on their behalf. A home visit can also be arranged.

The most usual way for claimants to supply evidence of such an illness is by providing the DS1500 form to which the hon. Gentleman referred. It is issued for the DWP by a GP or healthcare professional, either to the claimant or to their representative. We check our systems immediately and as a matter of course to see whether we already hold a DS1500 that was submitted as part of another claim. If one is already held, we reuse it for the universal credit claim. Receipt of that information indicates to us that the claimant must receive immediate access to DWP support, and that support immediately results in an additional £318.78 per month being included in their universal credit entitlement. The additional amount is payable from day one of their claim. In addition, the claimant is completely removed from any conditionality requirements.

The Department and the universal credit programme have regular meetings with key stakeholders, including Macmillan, Maggie’s centres and Mind, to understand how our policies are working, and to identify and discuss possible areas for improvement. I recognise that the hon. Gentleman has encountered universal credit claimants who have had issues with the service in his constituency. As I acknowledged earlier, things can go wrong, and when they do, I am sorry for that. If cases involve vulnerable claimants, it is particularly important that they are escalated, investigated and resolved quickly. I am aware that the hon. Gentleman has an effective direct relationship with the Scotland complaint resolution team, as well as with our local operations team, which has helped to manage a number of urgent cases to successful resolution.

As we continue to deliver the full universal credit service—it is now available in 178 jobcentres—with its expanded claimant base, we are continuing to review and further develop the customer journey for claimants with complex needs, including by looking into how we support terminally ill claimants to engage in the process. In that context, I welcome the hon. Gentleman raising these important issues on the Floor of the House. I do recognise that there are areas for improvement in the service, but he has seen for himself the drive, commitment and passion of so many of our staff, stakeholders and people working across universal credit to see this important reform through.

Question put and agreed to.