Social Security (Special Rules for End of Life) Bill [Lords]

Debate between Drew Hendry and Justin Tomlinson

2nd reading
Thursday 8th September 2022 Commons Chamber

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

I welcome the new Secretary of State and Ministers to the Front Bench. This Bill is a good place to start their new jobs. It is not a massive piece of legislation in its content, but its effect is seriously important for people. In welcoming it, it is important to stress that, but also to give voice to those who have suffered and had frustrations during the time that we have been waiting for this to happen.

This is a small but hard-fought step that will make the last days of life easier for the families and loved ones of those who are diagnosed with a terminal illness. Even though I still believe that the Bill does not go far enough, it is important to welcome that. Thousands of terminally ill people who were previously denied fast-track support will now get the help they need, which is hugely important.

There are also the thousands who did not get much-needed help in the time it has taken Governments to act. I heard the words of the previous Minister, the hon. Member for North Swindon (Justin Tomlinson), and I will talk about some of the positive things in a moment, but all the pre-laid excuses about why it has taken so long do not cut ice with the people who have suffered. That should be acknowledged when we are talking about this important issue.

The action needed was simple: scrap the six-month rule and make life a little easier for folk who do not have long to live—or even to get their forms in—so they can receive support and advice. The ask was to get rid of the arbitrary date, which was inhumane; I still think that having an arbitrary date is inhumane, but it is better than what we had before. The moral imperative is, and always was, to just do the right and decent thing for people and give folk who are dying some dignity in whatever time they have left.

That is what the Bill will do in some measure. It will make a difference to those at the end of their lives. It will relieve the financial worries of families who have received the news that no family and no person wants to hear. Moreover, it will ensure that they get fast-track support across all social security payments for the first time.

The Bill has been a long time coming, as I have said. We have many frustrations about how it has been handled, which I will come on to, because, as I said, I think it is important to give voice to them, but I thank the staff at the Department for Work and Pensions who have worked on this policy change. In my capacity as chair of the all-party parliamentary group on terminal illness, I thank outgoing Ministers for the constructive meetings that we have had over the years on this issue.

For me, the story began in 2017 when I heard the experiences of my terminally ill constituents and what they were going through from colleagues in the incredible Macmillan citizens advice bureau in Inverness. Indeed, it resonates with me still today. It is one of the sharpest memories that I have of any meeting I have ever had in my parliamentary career. I sat in a room with these battle-hardened—and, I have to say, battle-weary—professionals trying to help people at the end of their life, and I am not ashamed to say there were tears in that room as I heard their stories.

I could not believe what I was hearing, and I had sat opposite the Government Benches and heard quite a lot up until then. Even then, I thought that surely there must be some kind of mistake here, that it was simply a policy flaw that only allowed people to claim benefits if they had a diagnosis of six months to live, and that just highlighting this would allow us to move on and get this changed for people because, as I have said, and I will say again, it is inhumane for people. But no, this was a culture of hostility—I have to underline this—in the universal credit regime.

Terminally ill people also lost a lot more than just their payments at that time. Countless terminally ill people were forced to go to work coach meetings, and others had their social security payments stopped entirely. Some of these people died from their illness having not had their support payments, or their payments had not even started. Others had actually had their payments stopped, and were told that they no longer qualified for this.

As I say, with the new universal credit regime, terminally ill people also lost their right not to find out about their terminal diagnosis. Previously they could choose not to be told of their diagnosis, and that was possible because their advisers completed the forms on their behalf. With universal credit came a change to the forms, confusion at the DWP, a litany of failures and a “computer says no” attitude to problem solving. The system was pretty miserable for terminally people before the universal credit roll-out—no one has ever accused the DWP of being particularly keen to put dignity at the heart of its operations—but after the roll-out it was beyond a nightmare for people.

Back then, I reached out to Marie Curie and, with Members from across the House, set up the all-party parliamentary group on terminal illness. We launched a truly cross-party effort to have the issues arising from the universal credit roll-out resolved, and to get this Government to scrap the arbitrary six-month rule. We joined forces with the all-party parliamentary group on MND and, working with the MND Association and Marie Curie, we launched the Scrap 6 Months campaign.

I think it is important at this point to pay tribute to the former MP Madeleine Moon, who did so much work. I believe she is in the Gallery, which is fantastic. She deserves a lot of credit and praise for the work she did in pushing this forward, and I was delighted to work hand in hand with her, as I promised I would, to try to get this issue highlighted. I must also pay tribute to the hon. Member for Newport East (Jessica Morden), who has taken up the mantle with Bills of her own. Indeed, I have had my own ten-minute rule Bill on this subject.

We had two active APPGs, a cross-party approach and amazing campaigners who, with so much grace and humanity, laid everything on the table at evidence session after evidence session. An example is Michelle McCluskey, whose mum died of a cancer tumour, weighing just 3 stone after the DWP stopped her £117 a week benefit. She relayed the pain and suffering this caused her over and over again to the media and in evidence sessions, trying desperately to ensure that nobody else had to endure the same. She, like other amazing campaigners, such as Mark Hughes, who himself has a terminal illness, and others who have campaigned with terminal illnesses, achieved this change today. This change is their victory—this is their moment—and I want to put on record my thanks to each and every one of them, and to the teams at Marie Curie, the MND Association and MND Scotland for all they did to lobby this Government over the past five years to just simply do the right thing.

Back in 2017, when we started to form the campaign, we must have been much less jaded as we seriously thought, given how horrendous the situation was and how easy it was to fix, that this Government would act, but it is now 2022 and, thankfully, the legislation is now going through its remaining stages today. Although I am happy—I am happy this is happening, believe me, because as a result, thousands of people will get the fast-access support they need—and I welcome the Bill, I must highlight the human cost of this Government’s inaction. Year after year we produced reports, held evidence sessions, met Minister after Minister, and highlighted real and devastating cases. We were promised that action would come. I have heard stories of the internal workings, but people who are dying do not really want to hear those. They want action to help them and their families at that time.

We held evidence sessions, and every time we were promised that action would come. Then there was a reshuffle and a new Minister, more promises of action, another new Minister and yet more promises of action, then yet another Minister and so forth. All the while, the Government were telling us that the review was imminent, and all that time we were losing campaigners to their terminal illnesses as each new Minister came and went. That time cost many more lives than we ever foresaw. Back in early 2021, Marie Curie estimated that until that point around 6,000 people had died waiting for this change.

Let us remember what we are talking about. This is not a budgetary change or a big costly exercise; this is about faster access to help for people who are dying from a terminal illness. Five years from when I first raised the issue with the then Secretary of State, five years of campaigning by so many incredible people, and we are here—it is welcome. However, this is a story of a failing Government who need to understand the issues around this. Back when I first raised the issue with a UK Minister, I also raised it with the then Scottish Minister responsible for the roll-out of Scotland’s new social security operation, Jeane Freeman MSP. Her response was almost immediate:

“Thank you for highlighting this issue and we will find a way to ensure this never happens with the new Scottish Social Security Department.”

True to her word, for personal independence payments the Scottish Government have taken an open-ended approach to defining terminal illness for financial support. I have yet to have one complaint in my inbox that people are not getting that support, so I do not see the difficulties that have been highlighted. The Scottish Government chose to start from a place of putting those people and their needs first, and to find a way to make the system work while putting dignity and respect at the heart of the process. That is in sharp contrast to this Parliament, where the internal struggles of the Tory party have seen us reach our fifth Secretary of State for the Department for Work and Pensions in five years, and a hostile approach that is not limited to the Home Office but reverberates across Departments.

[Justin Tomlinson]

I absolutely understand the good intentions behind what the hon. Gentleman sets out, but the fundamental flaw is that it relies on people who are terminally ill knowing about the support, and how to navigate what is now a complex situation in Scotland. Under our rules, the 12-month rule, support can be automatically highlighted by GPs at the same time as palliative care. Not only is that a better system, but people who would otherwise unknowingly miss that support will get it. Will he lobby the Scottish Government to listen to the stakeholders he has praised and mirror what we are doing?

[Drew Hendry]

I thank the former Minister for his intervention, and I would say two things. First, the principle in Scotland was to ensure that it was not a DWP operative or contracted-out person who made the decision, but clinicians and health professionals. This is not a particularly party political issue, but I said that I would give a voice to the frustrations of people of all political persuasion, and none, who have struggled and suffered through this process, and that is what I am doing. I will always work to try to get a problem ironed out, should a problem exist, but I am not faced with the same content in my mailbag that I had in previous years due to difficulties with the DWP.

Like other Departments, the DWP is barely functioning at the moment, so there is real work for the new Secretary of State and Minister to get into. Staff from offices across the Chamber cannot get answers for our constituents, and the situation is even worse for colleagues in local citizens advice bureaux. People living with terminal illness face housing and fuel poverty on top of the rising costs that come with having to live with a chronic health condition: they have to stay in and heat their houses because they have to be as well as possible in those houses. People living with terminal illness face many ongoing issues, and they, like millions of households across the nations of the UK, are being failed if that is not heard. The Government must listen to those demands to treat dying people with dignity and respect and ensure that more people do not die stressful deaths in poverty due to inaction.

Oral Answers to Questions

Debate between Drew Hendry and Justin Tomlinson

Monday 7th October 2019 Commons Chamber

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

Thank you, Mr Speaker.

This Government are stringing terminally ill people and their families along. They already have the evidence from stakeholders and from what is happening in Scotland. When will they do what they should for these people and their families and scrap the six-month rule, get implicit consent in place, and make the situation one of fairness and dignity for people who are dying?

[Justin Tomlinson]

I pay tribute to the hon. Gentleman for his work as chairman of the APPG. We do take things seriously, which is why we are doing this thorough evaluation. We are already working with organisations such as Marie Curie, the MND Association, the Royal College of Nursing, the British Medical Association, Hospice UK, the Association for Palliative Medicine, Macmillan, the Queen’s Nursing Institute and Sue Ryder. We must get the balance right so that those who should be getting fast-track access to support are always prioritised, and we will be doing a thorough evaluation to ensure that we get that right.

Universal Credit Fraud

Debate between Drew Hendry and Justin Tomlinson

Wednesday 10th July 2019 Commons Chamber

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

In responding to the urgent question from my hon. Friend the Member for Airdrie and Shotts (Neil Gray) on this shocking and disgraceful criminal activity, the Minister said that he would do everything he could to “protect vulnerable people in society”. If that is the case, he will be aware that the all-party parliamentary group for terminal illness published its report last week on his Government’s six-month rule, which is causing harm and heartbreak for the dying and their families. Has he read the report’s damning evidence? If so, how can he justify his Government’s continuing with this policy?

[Justin Tomlinson]

I pay tribute to the work of the APPG and in particular the hon. Member for Bridgend (Mrs Moon), who has campaigned tirelessly with organisations such as the Motor Neurone Disease Association, Marie Curie, Parkinson’s UK and a number of others. As the Minister for Disabled People, I have had a number of meetings on this matter, particularly on the process as somebody claims through the special rules. We are aware of it, and the Secretary of State is personally passionate that we should do everything we can. This is an area in which we will be making significant improvements in the very near future.

Oral Answers to Questions

Debate between Drew Hendry and Justin Tomlinson

Monday 18th March 2019 Commons Chamber

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

19. What recent assessment she has made of the effect of her Department’s policies on levels of poverty.

[The Parliamentary Under-Secretary of State for Work and Pensions (Justin Tomlinson)]

Household incomes have never been higher. In 2016-17, there were 1 million fewer people living in absolute poverty than in 2010. In Scotland, whichever way we look at poverty—relative or absolute, and before or after housing costs—in the three years to 2016-17, no measures are higher than in the three years to 2009-10; in fact, three are lower.

[Justin Tomlinson]

I am sorry to hear about the circumstances of that case, and I am happy to look into it further. One of the recent announcements we have made is that there will be Citizens Advice support within every jobcentre from April onwards. That is the sort of case where Citizens Advice can step in and provide independent support and advice, to ensure that people get their full entitlement.

[Drew Hendry]

Be it universal credit, the benefit freeze or Brexit, the poor are being hit the hardest at the moment, yet according to research from the Resolution Foundation, overall tax and benefit changes will take £100 from families in the bottom fifth of income distribution and give £280 to those in the top 10. Does the Minister think that that is fair?

[Justin Tomlinson]

That is not something I recognise. Through the additional money being put into universal credit, record employment, the changes to the income tax personal threshold and rising wages, the poorest fifth in society are now £400 better off in real terms than in 2010.

Oral Answers to Questions

Debate between Drew Hendry and Justin Tomlinson

Monday 14th March 2016 Commons Chamber

[Justin Tomlinson]

I simply do not accept that. We are increasing the numbers of people who will benefit from the PIP system, we continue to improve the claimant’s journey, and we work extensively with our stakeholders to make sure that improvements are ongoing. By the end of this Parliament, we will be spending more money in this area than we are today.

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

One of my constituents, a Mr McLoughlin, is registered as blind, but he has been denied, through the access to work scheme, essential equipment to help him work. The reason given was that able-bodied people would also be able to use the equipment. I am interested to know what equipment the Minister believes an able-bodied person could not use that a registered blind person could. Will he personally look into Mr McLoughlin’s case and that of others who face the same difficulty?

[Justin Tomlinson]

I will happily look into it, because without having all the details I cannot comment. On the broader issue, we are now helping more than 38,000 people a year—close to record numbers—with the access to work funding, which is in the fourth year of growth, and we have just secured funding for a further 25,000.

Oral Answers to Questions

Debate between Drew Hendry and Justin Tomlinson

Monday 1st February 2016 Commons Chamber

[The Parliamentary Under-Secretary of State for Disabled People (Justin Tomlinson)]

I join my hon. Friend in paying tribute to the fantastic work of the Multiple Sclerosis Society. Only two weeks ago, I was at the Swindon branch’s 50th anniversary. The society has a huge number of volunteers across the country who are making a difference. Its work toolkit stands out as an example of best practice, both for employers and employees, and I am keen for that to be highlighted and for that best practice to be shared among other organisations.

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

The Minister’s latest proposals to change the way in which personal independence payments are assessed will be a further blow to disabled people, who have been among the hardest hit by the UK Government’s austerity measures. I know from my constituents who are experiencing lengthy delays that the assessment process is not yet working. Will the Minister abandon these latest proposals, which will narrow disabled people’s eligibility for benefits, and instead focus on getting this part of the process right rather than adding complex changes that will reduce the support available to disabled people?

[Justin Tomlinson]

We are doing ongoing work with disability groups and user groups following the Paul Gray review, which flagged this as an area, and we are determined to get a clear and consistent policy as we analyse those consultation responses. The length of time for an assessment has fallen by three quarters since June 2014. It is now down to five weeks for an assessment, and 11 weeks median end to end. That has been a settled position for quite some time now.

Welfare Benefit Changes

Debate between Drew Hendry and Justin Tomlinson

Wednesday 14th October 2015 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Pritchard. I give my apologies because, as you know, I have to leave before the end of the debate. I congratulate the hon. Member for Swansea East (Carolyn Harris) on securing this important debate. I would talk about tax credits, child poverty and working families, but I am aware that a lot of people want to speak. We have already heard powerful speeches and I am sure that we will hear more. I will therefore focus on what is a constant issue at my constituency surgeries.

The Government’s new proposals build on existing failures that will further punish those in need of our help. In Inverness, Nairn, Badenoch and Strathspey, an ever-rising number of constituents get in touch with me about their personal independence payment claims. There is the gentleman who has just had a second stroke but been deemed fit to work, and the young man with severe disabilities whose benefits were removed because the very action of his carrying a letter handed to him by his carer from the assessment room was evidence enough for an Atos assessor to make a judgment on his reading abilities.

Four out of 10 decisions made by Atos are later overturned. The stress people are put through in those assessments is incredible. There is a woman who, having worked all her life, now holding down two jobs, faces eviction because her husband took ill but was deemed fit for work, despite his being housebound. They can no longer make their rent; they are currently three months in arrears and shortly they will be knocking on Highland Council’s door as homeless, leaving their private rental and joining the 10,000 people waiting on the Highland housing register.

Day in, day out I see the pain and suffering my constituents are put through just to get an Atos appointment, for the lack of a home visit is the first hurdle for many disabled people. I have listened time and again to people describe the process in the assessment room. They use words such as degrading, inhuman and disgraceful, which are repeated often. Each and every one of them faces a catalogue of questions when the primary aim seems to be to find a hook to remove or reduce their benefit entitlement.

Minister, why is it that 30 minutes in an assessment room counts for more than months and years of medical records, or indeed the medical advice of those who are treating people on a daily basis? Why is it that I constantly find myself astonished that those people have been even asked to make their way to attend an interview, given their severe medical conditions?

[Justin Tomlinson]

I am conscious that the hon. Gentleman will not be here for my response. The process takes more than an hour, and it is nothing to do with whether an individual is fit for work. PIP is different from ESA and the assessor is not making a decision on whether someone should get a benefit. Their job is to help the individual complete the forms to present the strongest possible case to the DWP staff. I feel that he is mixing up two benefits.

--- Later in debate ---

[Drew Hendry]

I encourage the Minister to come and speak to people in my surgeries who have had to go through this, because I do not recognise the procedure he describes and neither do my constituents.

Indeed, even those who have degenerative illnesses are asked to attend assessment and reassessment. By the very nature of their illness, those people are not getting better. Why on earth does anyone find it acceptable to keep reminding them of that while subjecting them to punishing assessments? Why is my office dealing on a daily basis with constituents who, because—often aided and struggling—they can walk 50 metres, are cut off from mobility support?

[Justin Tomlinson]

Under the old DLA system, 71% of people were given lifetime awards, but the conditions of one in three people changed significantly within a 12-month period. Without a reassessment, huge numbers of people were on a lower benefit than they were entitled to, which is why, under DLA, only 16% of people got the highest rate of benefits. Under the personal independence payment, that figure is 20%. It is right to make sure that people get the appropriate amount of support.

[Drew Hendry]

I thank the Minister for that intervention, but again I have to say that he must get out there and speak to people in our constituencies, because their experiences are not reflected in his remarks.

I will conclude, because I am conscious that other people should speak in the debate. The effects of benefit changes are wide-ranging and widespread. I urge the Government to reconsider those punishing changes. We have also heard about the changes to tax credits and the vulnerability of the working families who will be affected. A great number of people in my constituency will be pushed into further poverty because of those changes in the coming months. I urge the Government not to use vulnerable people and the disabled as scapegoats for what is, essentially, a failed austerity agenda.

Child Poverty

Debate between Drew Hendry and Justin Tomlinson

Tuesday 15th September 2015 Westminster Hall

[Justin Tomlinson]

I thank the hon. Gentleman for that intervention. That is a fair point. At the moment, we are seeing about 1% a month coming off the ESA benefit. It is a poor success rate and we would expect far better. In his speech, the hon. Gentleman was bang on, in that we need to have localised individual responses. We need better support and to have more businesses signing up to provide those opportunities. We are looking to reform that and are in consultation. I spent much of the summer with my Minister for Disabled People hat on, doing visits and looking at the best ways that that can be done in the changes. Given the record of 1% a month coming off that benefit, and with people often then slipping back in, it is incredibly important to address that looping effect.

The wider issue is a tragedy for each and every family, because families in which no one works lose their sense of self-worth.

[Drew Hendry]

From the Minister’s words, I am sure that he, personally, very much wants to see a long-term solution to the problem, but he mentioned a long-term ambition. Does he not accept that by not having a short and medium-term option for people in work at the moment, they will be punished and pushed further into poverty by the removal of those working tax credits, particularly in constituencies such as mine, where there is relatively low unemployment but very low wages?

[Justin Tomlinson]

I will address that later, so please be patient for a little bit longer.

Children grow up without the aspiration to achieve. They become almost certain to repeat the difficult lives of their parents, following a path from dependency to despondency, rather than to independence. At the beginning of my remarks, I talked about my background. That is what drove me into politics. We all have our calling, our passions and our priorities. That very much was what drove me into politics. As I said, I think we all share the same end goal; there is just disagreement on how we would look to achieve it.

On our record on worklessness and poverty, I highlight that many hon. Members have referred to the IFS statistics throughout the debate. I sound a strong note of caution on that. The statistics have been wrong every single year since 2011, and in the summer, they were half a million out, so I attach a big note of caution to the predictions and doom-mongering.