Universal Credit and Terminal Illness

Philippa Whitford Excerpts

Wednesday 9th May 2018 Commons Chamber

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

My hon. Friend mentioned working with groups such as the Motor Neurone Disease Association. As many Members know, my experience has been walking that journey with women with breast cancer. I always used to say to them, “Make sure that you put every day in your back pocket when you go to bed, and say, ‘That was a good day.’” In Scotland we are trying to extend the period so that we recognise people as terminally ill for a much longer period so they will receive their benefits. To waste the months that someone might have left by haggling about money while the days are ticking away is just cruel and uncivilised.

[Drew Hendry]

My hon. Friend has identified the nub of the issue. People literally do not have time for this.

I recently set up an all-party parliamentary group on these issues, which is supported by many of the organisations that I have mentioned, but the issues are still ignored. This evening, as I relay to the House the specific impact that universal credit is having on people with terminal illness, I ask the Minister not to follow the same path, but to listen carefully to the very real experiences of the families who face the prospect of losing loved ones, yet have to watch them fight for financial support.

Before the introduction of universal credit, terminally ill people with six months or less to live were able to fast-track their benefit claims to ensure that they could spend at least their last weeks and months with the support to which they were entitled. That has not been the experience of those who are unfortunate enough to be terminally ill in an area where universal credit has been rolled out. It is the worst kind of postcode lottery, and it will reach many more places if the Government proceed with the roll-out in its current form.

The first issue that I want to discuss is the Government’s legal definition of terminal illness. The Motor Neurone Disease Association and Marie Curie, among others, tell us that it seriously restricts access to benefits for those living with a terminal illness who do not fall into the “last six months of life” category specified in the Welfare Reform Act 2012. People with conditions such as terminal heart failure, chronic obstructive pulmonary disease, MND and other terminal conditions who may live longer than 10 months, but equally may die in a shorter period, must apply for social security in the usual way, and will be subject to all the normal assessments, which—unbelievably—can include work assessments.

People living with such conditions, and their families, face a significant financial burden as a result. Some 82% of people with MND describe the financial impact of the disease as “very negative” or “moderately negative”. People of working age and people with children living at home are particularly vulnerable to negative financial consequences. I note that people with MND will once again be protesting outside the House on 16 May, and I look forward to supporting them there until there is movement on this issue.

The financial effect of MND on those living with the condition becomes more difficult to manage as the disease progresses and a person’s care, support and equipment needs increase. On average, the cost of living with MND is an extra £12,000 a year, not including loss of income. So why should an arbitrary time limit of six months be attached to the status of the terminally ill? It is a timescale that means nothing to people with degenerative conditions with no cure, who have no hope of improvement. There is no evidence-based reason why the Minister cannot choose a different path, as the Scottish Government have done with their new limited powers relating to disability benefits. They see support for people who are terminally ill as a complex, sensitive and difficult issue, but they have put dignity and respect at the heart of their Social Security (Scotland) Bill. Jeane Freeman, the Minister for Social Security, has said:

“We are very aware that behind the decisions that we make, are thousands of people who we put front and centre of our actions. The central principle is that terminally ill individuals should be provided with the support they need, quickly. ”

That is all that we ask of this Government. We ask them to see those people as people, and not as the number that they represent on a spreadsheet.

The Scottish Government’s amendment to the Bill was framed carefully to ensure that the sensitive and difficult conversations between an individual and their clinician, which are required in these difficult circumstances, are held when they are medically necessary to allow for optimal patient care. Providing for maximum clinical judgment is the best way to achieve that.

The Scottish Government have opted to set no arbitrary timeframe to the definition of terminal illness; instead they allow the chief medical officer, in consultation with the registered medical practitioners, to set a framework in guidance. It is this guidance that will decide when an individual has a progressive disease that can reasonably be expected to cause that individual’s death. Both the chief medical officer and the chief nursing officer, and national experts, have reviewed and fully support the Scottish Government’s proposals as the best way to achieve timely support for those with terminal illness.

Also embedded in Scotland’s Social Security (Scotland) Bill—and therefore enshrined in legislation—are clear “special rules” for terminal illness cases. These guarantee terminally ill people quick access to disability assistance, ensuring that an individual does not have to satisfy a qualifying period in relation to their diagnosis and that they will not have to undergo further assessments to prove that they have a terminal illness. The awards will be calculated at the latest from the date of application and they will automatically get the highest rate of financial support to which they are entitled. That is in line with the Scottish Government’s commitment to the principle of providing support when it is needed. It maintains fast-tracking for the people with terminal illness to remove barriers to their receiving care as soon as possible.

Marie Curie has echoed its support of the Scottish Government and would like to see the UK Government follow their lead in setting a fairer definition of terminal illness. It asks that decisions around a terminal illness diagnosis be clinically made and supported through the issue of a DS1500 to a patient by their health professional. Ahead of this debate, Marie Curie told me:

“With the Scottish Government defining terminal illness on clinical judgement and Universal Credit remaining the purview of Westminster, we are concerned that differences between the two systems will create administrative problems. If Westminster were to follow suit and amend its definition of terminal illness to a clinical judgement, we could avoid a potentially harmful situation when Universal Credit is almost fully rolled out.”

Marie Curie is joined by 58 clinicians who signed a letter in support of changes to the Social Security (Scotland) Bill.

Similarly, MND told me:

“The UK Government should adopt the definition of terminal illness set out in the Social Security (Scotland) Bill 2018”,

and that

“The DWP should update its guidance to assessors and claim managers, to emphasise that the validity of a DS1500 signed by a health professional should not be challenged.”

I therefore have some asks for the Minister. I ask her to listen—to really listen—to what she is hearing from people suffering from these terminal conditions and really listen to the professionals and clinicians. I also ask her to scrap the arbitrary six-month definition. It means nothing to 90% of people with a condition medically classed as, or linked to, a terminal illness.

Even those who have been identified as terminally ill, as defined by this Government, with less than six months to live do not escape the nightmare of universal credit. That includes 65,900 people across all the nations of the UK. They continue to experience delays upon delays. I join MND and Marie Curie in their calls for cuts to those unreasonable delays.

Therefore, I have another ask for the Minister. The benefits for those with a terminal illness under universal credit should be fast-tracked, ideally paid in advance and within a calendar week of when the application has been made, and a DS1500 given to the DWP. The current wait of five weeks for “fast-track” support is simply unacceptable.

There are also those on universal credit who have lost the right not to know they are dying. Instead, they are forced to complete the forms, which force them to answer the question, effectively saying, “Yes, I am dying.” Before the introduction of universal credit, advocacy could do this for them. What possible reason could there be to remove this right? A completed DS1500 form should be considered sufficient evidence by the DWP that a person is terminally ill and will not get better, and that their condition will deteriorate from that point until their death. A DS1500 should be allowed to be issued on behalf of a person and accepted by the DWP in the same way as if submitted by the applicant themselves.

So I have another ask for the Minister: the DWP should immediately establish a process to ensure that DS1500s can be submitted by a third party without the explicit consent of the claimant.

Then there are those people left with a devastating cut to their income due to the removal of the severe disability premium. Without any change in their diagnosis, such people are left around £2,000 a year worse off, and the sad reality is that they will not even live a year as this Government’s definition of terminally ill means a predicted life expectancy of less than six months. I have another ask: the DWP should urgently review its policy on the inclusion of severe and enhanced disability premiums within universal credit to ensure that disabled adults do not experience a reduction in vital support. Perhaps one of the most shocking issues is that people with less than six months to live have been asked to meet a job coach to justify their unemployment because the guidelines around forms are unclear. Someone with a terminal illness, as evidenced by a DS1500, should not be required to undergo any face-to-face assessment for support under universal credit or undergo any further assessment or reassessment. I ask the Minister urgently to set out clear guidelines on that because the guidelines are not working.

These are just some of the issues that people with a terminal illness face because of this Government’s failure to put dignity and respect at the heart of their welfare policies. I ask the Minister to imagine what it must be like to face all this stress in the last months of life—a time when the person and their family should be cherishing every precious remaining moment together. People should not have to jump through welfare hoops and spend their final weeks and months dealing with a broken system. Getting financial support is not an option for them; it is a necessity to keep a roof over their head.

I fully expect the Minister to tell me that I am wrong and that all is well with the system, because that is all that I have heard whenever I have raised such issues. Perhaps we will even hear that, despite the evidence and the testimony of all the groups involved, that this is simply scaremongering, and I have heard that response on the many times I have raised this issue. I have raised it at Prime Minister’s questions three times in a row. I have raised it many more times in debates, and I have heard the claim that terminally ill people are being served well. Terminally ill people and their families watching this debate are seeking an answer.

The reality is that, because of this Government’s failing welfare system, people are spending their last days fighting a cruel and broken system. The Minister has the power to change that. She can do as the Scottish Government have done and think about the people concerned, about their debilitating illnesses, about their families and their children and about their final days. I believe that the Minister wants to do that, and this is her opportunity to prove it. She can make a start by making the changes that I have outlined.

--- Later in debate ---

[Sarah Newton]

The hon. Gentleman has asked me to respond to a lot of questions, which I really want to do, and we have very little time left this evening, so let me say from the outset that I am happy to meet him face to face to go through anything that I have not covered to his satisfaction this evening. It is great that he has set up an all-party parliamentary group. I have worked directly with those stakeholders and charities myself, and I would be happy to meet him in his role as the chairman of the APPG to go through some of the issues. Inevitably, in the time left tonight, I am not going to be able to cover everything that I would like to cover.

I want to emphasise that, once we understand that someone has a terminal illness, we do not want them to have to fill in lots of different forms. We want them to be able to concentrate on what really matters to them in the time that they have left. I know from this debate and others that the hon. Gentleman has raised concerns about the DS1500, so it is important that I explain a little about the process to the House. Claimants and healthcare professionals use the form—it is not a claim form; it is a form—to tell us about a terminal condition. It is not mandatory for claimants to complete the form. It is an opportunity for them to tell us about their condition, and it helps us to ensure, as soon as we know that they are terminally ill, that we can waive all the requirements that are usually associated with universal credit relating to conversations with work coaches about employment. All that is waived. Right from that moment, there is a fast-track system. Once we receive the DS1500, people are immediately entitled to those benefits.

The hon. Gentleman mentioned a lack of clarity in the DWP’s handling of these issues. He has raised this matter before, and we took it really seriously. We updated the guidance—a copy was put in the Library in February—to ensure that all the medical professionals and people in the DWP understand the processes, so that people can be fast-tracked.

[Dr Whitford]

Will the Minister give way?

[Sarah Newton]

I am not going to give way, because I only have a couple of minutes left and every moment I give way means that I cannot answer the questions that I have been asked. However, I sincerely want to carry on this conversation. I will answer as many questions as I can tonight, but I know that Madam Deputy Speaker will ask me to sit down shortly. We can carry on the conversation, however.

There was a conversation this evening about the definition of terminal illness. Our definition of someone who is terminally ill is that they have a progressive disease and a life expectancy of six months or less. We understand that this is not an exact science, and there is much debate among medical professionals about this. We do not ask claimants to give us evidence of their life expectancy, so terminally ill claimants may well remain on benefits for longer than six months. For example, with personal independence payments, around 40% of terminally ill claimants remain on benefits for longer than a year. We take a pragmatic, person-centred approach to these decisions. These rules were first introduced in 1990. We have regular conversations with the medical profession, and we want to ensure that people are given an absolute guarantee of the financial support that they and their families need and that their claims are handled swiftly to reduce the burden on individuals.

Having listened to the medical profession, we understand that six months strikes about the right balance between providing the support that people need and confidence in the prognosis, because the longer the prognosis, the less likely it is to be accurate. Making the period longer than six months would therefore make the diagnosis, and potentially the conversation between doctor and patient, that much more difficult. The Department works very closely with doctors and clinicians, and we are always looking for ways to improve the experience for any of our claimants and for any of our benefits.

We know that people need support with the DS1500 form. Our staff can offer support and we have consent arrangements in place so that third parties—excellent organisations such as Macmillan—can work directly with us. We have visiting services so that someone can go to a patient’s home to go through this, and the Department has well-established appointeeship arrangements for people who are unable to manage their own affairs.

With regard to how universal credit works in this situation, as soon as we know that someone is terminally ill, they will receive an additional £318.76 a month in their universal credit entitlement, paid from day one, and there are no work-related requirements at all.

I am out of time and have not been able to address all the work that we have been doing, listening carefully to our partners and making sure that the interface between universal credit and the legacy benefits of employment and support allowance and personal independence payment runs as smoothly as possible. It is incredibly important that we listen and learn and make improvements, so that this tragic situation that people find themselves in is dealt with as sensitively and swiftly as possible. I am absolutely determined to do that and will be very pleased to meet the hon. Gentleman and the all-party parliamentary group to go through their questions in more detail and provide further information and assurances.

Question put and agreed to.